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Får ikke prøve banebrytende medisin: – Systemet er umenneskelig

Kilde: VG Author: Anne Stine Sæther Published: 2026-01-25 08:57:55 Last updated: 2026-01-25 10:15:56
Får ikke prøve banebrytende medisin: – Systemet er umenneskelig

Ny forskning gir ALS-pasienter håp. Men alvorlig syke Kirsten og Kjartan får nei til å prøve.

Den nye medisinen som nå skal testes ut på ALS-syke i Norge er resultatet av et samarbeid mellom Universitetssykehuset i Göteborg og Queen Elizabeth Hospital i Birmingham i England.

Den lovende medisinen har fått navnet ILB.

– For meg er det ingen risiko ved å prøve disse medisinene. Jeg skal uansett dø, sier Kirsten Jacobsen (62).

VG har snakket med to ALS-syke - Kirsten (62) og 52-år gamle Kjartan Børdal Hovgaard. Ingen av dem har fått lov å delta i prosjektet, som ledes av Oslo Universitetssykehus (OUS).

Begge har også søkt om tilgang til medisinen utenom studien og fått avslag, selv om de selv foreslår at de kan betale for behandlingen.

Det er ca 400 ALS-pasienter i Norge. I studien er det plass til 116 deltakere.

– De som ikke får være med, overlates til ingen behandling og en sikker død. Jeg mener det er uetisk. De burde fått medisinen via godkjenningsfritak, eller i en egen «forskningsarm.» Er dette forsvarlig, spør Hektor Hovgaard, Kjartans bror.

Slik foregår studien:

  • Halvparten av de 116 deltagerne som er med i OUS-prosjektet får medisinen ILB, mens den andre halvdelen får Riluzol, en eksisterende medisin.
  • Riluzol beskrives som et legemiddel med svært begrenset effekt. Pasientene som deltar i studiet, vet ikke selv hva de får.
  • Prosjektet samarbeider med sykehus over hele landet.

– Oppfyller ikke kriteriene for å delta

– Vi er veldig lei oss for pasienter vi må si nei til. En stor andel av ALS-pasientene oppfyller ikke kriteriene for å delta i studien. De er kommet for langt i sykdomsforløpet. For å delta må de ha funksjoner som kan måles, sier prosjektleder, overlege Angelina Hatlø Maniaol.

Hun er nevrolog ved Oslo universitetssykehus.

– Vi har et håp som alle andre. Det er å finne en ny behandling, en bremsemedisin som kan forlenge livet. Pasientene blir ikke kurert. Sannsynligheten for det er veldig liten. Det beste utfallet er at vi kan bevise at ILB virker og at det kommer flere studier i etterkant av denne som tester nye produkter mot ALS.

Prosjektleder Angelina Hatlø Maniaol, nevrolog og overlege ved OUS

– Hun står uten behandlingsalternativer

Overlege og spesialist i nevrologi, Abdullah Mohammud, søkte i oktober i fjor på vegne av Kirsten Jacobsen, om tilgang til den nye medisinen utenom OUS-studien, et såkalt godkjenningsfritak.

Legen er tilknyttet Oslo universitetssykehus, Smerteklinikken og Colosseumklinikken.

– Formålet med søknaden er å sikre pasienten tilgang til en potensielt symptomlindrende og livsforlengende behandling, som kan bidra til å bremse sykdomsprogresjon og bevare funksjonsevnen, skrev han i søknaden.

– Hun står uten behandlingsalternativer. Pasienten er kjent med og aksepterer at det for medisiner som er under utvikling, kan oppstå tidligere ukjente bivirkninger, også av alvorlig grad eller fatale.

For Kirsten ville den nye medisinen gitt håp. Men hun fikk avslag.

– Vi har mottatt tre søknader om godkjenningsfritak for ILB de siste månedene. To av sakene er fortsatt under behandling. Fordi sakene ligner på hverandre, ønsker vi ikke å uttale oss nå, sier pressevakten i Direktoratet for Medisinske Produkter til VG.

Medisinen som nå skal testes ut i Norge, er tidligere testet i et svensk/britisk prosjekt. Her er det rapportert om funksjonsforbedring hos flere pasienter og ingen alvorlige bivirkninger av den nyutviklede medisinen.

Blant ALS-syke har erfaringene til svenske Erik, en pasient i 30-årene, tent et håp.

Han har selv fortalt i svenske medier at han ble tydelig bedre etter å ha deltatt i prosjektet.

VG får opplyst at Erik er den eneste pasienten i studiet som fortsatt lever.

Beinet sviktet

Kirsten Jacobsens første symptomer på alvorlig sykdom, var et bein som svikt et.

– Etter hvert greide jeg ikke å gå lenger, sier hun.

– Det utviklet seg gradvis. Det er det som er denne sykdommen. Den er grusom. Du har gradvise tap av muskulatur hver dag. Det er nådeløst og det går sakte, sier ektemannen Tallak Thorleifsson.

Ved påsketider i 2023 kom diagnosen.

Kirsten hadde ALS.

Nesten tre år senere sitter hun i rullestolen hjemme i Oslo. Pustehjelp er blitt en del av hverdagen.

– Et siste håp

ALS-diagnosen er tung for hele familien. Håpet var et positivt svar på søknaden om å få bruke ILB.

– Det oppleves dypt urettferdig at moren vår nektes et siste forsøk, selv om hun tar både kostnad og risiko innenfor en ordning som er ment å gi håp til alvorlig syke uten behandlingsalternativer, sier datteren Tilde Thorleifsson.

– Et nei i en slik situasjon er ikke nøytralt – det er et valg om å beskytte systemet fremfor å vise medmenneskelighet.

Hun og broren Mandius har sett mamma bli stadig mer preget av sykdommen.

– Når alternativet er en sikker død, opplever vi det som etisk uforståelig at frykten for å gjøre feil veier tyngre enn viljen til å gi håp, sier datteren.

– Hvis behandlingen senere viser seg å ha effekt, vil det være tungt å leve med at hun ble nektet denne muligheten mens tiden fortsatt fantes. For meg som datter er dette først og fremst et etisk spørsmål om hvordan et system kan nekte døende et siste håp.

Forsker: – Stanset sykdomsutviklingen

Ann Logan, professor i regenerativ medisin ved University of Warwick i England, er ansvarlig for den svensk/britiske studien.

Til tidsskriftet Neurologi i Sverige, sier hun:

– Ingen andre ALS-legemidler har vist tilsvarende sykdomsmodifiserende effekter.

Hun mener ILB tilhører neste generasjons legemidler som kan beskytte og reparere sykt og skadet nerve- og muskelvev.

– Dette innebærer at det åpnes nye muligheter for å utvikle en helt ny klasse av neuroregenerative legemidler. Det vi ser kan være et paradigmeskifte ved behandling av ALS. Jeg forsvarer selvsagt arbeidet mitt med ILB fullt ut, og står bak alle uttalelser og sitater som er tillagt meg, sier professor Logan til VG.

Professor Ann Logan er forsker ved University of Warwick i England

Svenske «Neurologisk Tidskrift» skriver at prosjekt hun ledet kan ha funnet en metode som påvirker mekanismer som har betydning for utviklingen av ALS og andre nevrodegenerative sykdommer.

DMP: – Ikke godkjent og ikke forsvarlig

Direktoratet for medisinske produkter (DMP) slår fast at bruken av legemiddelet ILB ikke kan anses som forsvarlig.

DMP viser til at medisinen ikke er godkjent i noe land og kun er testet i små, tidlige fase 1- og 2-studier, uten dokumentasjon på klinisk effekt.

– Systemet er umenneskelig. De vil beskytte seg selv. Men de må ikke ta fra oss håpet, sier Tallak, Kirstens ektemann og nærmeste støtte.

  • Oslo universitetssykehus opplyser på forskningsprosjektets hjemmeside at hos ALS-pasienter har sikkerheten og den foreløpige effekten av ILB tidligere blitt undersøkt i to studier med til sammen 24 deltagere.
  • I begge studiene ble det rapportert at pasientgruppen*tålte medisinen godt*. De fleste bivirkningene var milde eller moderate, de var kortvarige og trengte liten eller ingen behandling.
  • OUS skriver at h*ensikten med prosjektet er å måle effekten og sikkerheten av ILB*sammenlignet med den nåværende standardbehandlingen, Riluzol.

– Det finnes hverken vurdering av nytte- eller risikoprofil, preparatomtale eller kvalitetssikret informasjon om dosering og bivirkninger. Usikkerheten rundt sikkerhet og effekt vurderes som betydelig. Selv ved alvorlig sykdom som ALS kan ikke manglende behandlingsalternativer oppveie kravet til dokumentasjon, skriver Direktoratet for Medisinske Produkter til VG.

Direktoratet understreker at forsvarlighetskravet er absolutt og ikke kan fravikes.

– Vilkårene for godkjenningsfritak er ikke oppfylt, skriver overlege Ingrid Aas i Direktoratet for medisinske produkter til VG.

Avslag prøves i svensk rett

– Gis ingen sjanse

Kjartan Børdal Hovgaard (52) er alvorlig ALS-syk. Via lege har også han søkt om å få bruke ILB. Kjartan har vært selvstendig næringsdrivende innen fiskeoppdrett hjemme i Sogndal.

Han er samboer og tenåringspappa.

Friluftsmannen var vant til å ferdes til fjells. I 2017 begynte han å snuble på stiene.

En venn døde av ALS i 2019. Kjartan var kjent med sykdomstegnene.

ALS rammet hardt.

– ILB er godkjent for prosjektet ved OUS. Men det godkjennes ikke for pasienter som er så syke at de har kort tid igjen hvis de ikke får medisinen. Det er blankt nei. I Norge er det mange ALS-pasienter som ikke gis en sjanse til å overleve, sier Hektor Hovgaard, Kjartans bror.

Hans nærmeste familie reagerer sterkt på at pasienter med alvorlig eller livstruende sykdom ikke får tilgang til et lovende legemiddel, når det ikke finnes andre behandlingsalternativer.

– Hvorfor bruker man ikke bestemmelsen som gir tidlig tilgang til nye medisiner? Og hvordan kan den samme medisinen være farlig utenfor en studiesetting, men trygg innenfor? Uten medisin dør Kjartan om kort tid, sier hans bror.

Advokat Max Henrik Jespersen ved Elden Advokatfirma, har på vegne av Kjartan Børdal Hovgaard klaget Direktoratet for medisinske produkter (DMP) inn for Helse- og omsorgsdepartementet.

Vil du lese mer om helse og trening? VGs magasin Helse består av 100 sider om kroppen, formen og hodet – og kan kjøpes i vår nettbutikk (fri frakt!)

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🏷️ Extracted Entities (41)

ALS (entity) ILB (entity) Kirsten Jacobsen (person) Kjartan Børdal Hovgaard (person) Norge (entity) OUS (entity) Ann Logan (person) England (place) Helse 📁 (category) Oslo (place) ALS 🏷️ (keyword) Diagnose 🏷️ (keyword) Sykdom 🏷️ (keyword) vg:helseoglivet 🏷️ (keyword) DMP (entity) Direktoratet (entity) Erik (entity) Hektor Hovgaard (person) Helse (entity) Prosjektleder Angelina Hatlø Maniaol (person) Riluzol (entity) Tallak Thorleifsson (person) University of Warwick (organization) Abdullah Mohammud (person) Birmingham (place) Colosseumklinikken (entity) Elden Advokatfirma (person) Er (entity) Göteborg (entity) Ingrid Aas (person) Mandius (person) Max Henrik Jespersen (person) Neurologi (entity) Neurologisk Tidskrift (entity) Queen Elizabeth Hospital (organization) Smerteklinikken (entity) Sogndal (place) Sverige (entity) Til tidsskriftet Neurologi i Sverige, sier hun (organization) Tilde Thorleifsson (person) Universitetssykehuset (entity)

📊 Metadata

Category: Helse
Keywords: vg:helseoglivet, ALS, Sykdom, Diagnose

Article Version History (2 versions)

This article has been updated since it was first fetched. Below are all versions:

Version 2 Current 2026-01-25 10:30:50
Får ikke prøve banebrytende medisin: – Systemet er umenneskelig
UPDATE
Author: Anne Stine Sæther Published: 2026-01-25 08:57:55 Updated: 2026-01-25 10:15:56 Category: Helse
📝 Summary

Ny forskning gir ALS-pasienter håp. Men alvorlig syke Kirsten og Kjartan får nei til å prøve.

📄 Full Content (9449 chars)

Den nye medisinen som nå skal testes ut på ALS-syke i Norge er resultatet av et samarbeid mellom Universitetssykehuset i Göteborg og Queen Elizabeth Hospital i Birmingham i England.

Den lovende medisinen har fått navnet ILB.

– For meg er det ingen risiko ved å prøve disse medisinene. Jeg skal uansett dø, sier Kirsten Jacobsen (62).

VG har snakket med to ALS-syke - Kirsten (62) og 52-år gamle Kjartan Børdal Hovgaard. Ingen av dem har fått lov å delta i prosjektet, som ledes av Oslo Universitetssykehus (OUS).

Begge har også søkt om tilgang til medisinen utenom studien og fått avslag, selv om de selv foreslår at de kan betale for behandlingen.

Det er ca 400 ALS-pasienter i Norge. I studien er det plass til 116 deltakere.

– De som ikke får være med, overlates til ingen behandling og en sikker død. Jeg mener det er uetisk. De burde fått medisinen via godkjenningsfritak, eller i en egen «forskningsarm.» Er dette forsvarlig, spør Hektor Hovgaard, Kjartans bror.

Slik foregår studien:

  • Halvparten av de 116 deltagerne som er med i OUS-prosjektet får medisinen ILB, mens den andre halvdelen får Riluzol, en eksisterende medisin.
  • Riluzol beskrives som et legemiddel med svært begrenset effekt. Pasientene som deltar i studiet, vet ikke selv hva de får.
  • Prosjektet samarbeider med sykehus over hele landet.

– Oppfyller ikke kriteriene for å delta

– Vi er veldig lei oss for pasienter vi må si nei til. En stor andel av ALS-pasientene oppfyller ikke kriteriene for å delta i studien. De er kommet for langt i sykdomsforløpet. For å delta må de ha funksjoner som kan måles, sier prosjektleder, overlege Angelina Hatlø Maniaol.

Hun er nevrolog ved Oslo universitetssykehus.

– Vi har et håp som alle andre. Det er å finne en ny behandling, en bremsemedisin som kan forlenge livet. Pasientene blir ikke kurert. Sannsynligheten for det er veldig liten. Det beste utfallet er at vi kan bevise at ILB virker og at det kommer flere studier i etterkant av denne som tester nye produkter mot ALS.

Prosjektleder Angelina Hatlø Maniaol, nevrolog og overlege ved OUS

– Hun står uten behandlingsalternativer

Overlege og spesialist i nevrologi, Abdullah Mohammud, søkte i oktober i fjor på vegne av Kirsten Jacobsen, om tilgang til den nye medisinen utenom OUS-studien, et såkalt godkjenningsfritak.

Legen er tilknyttet Oslo universitetssykehus, Smerteklinikken og Colosseumklinikken.

– Formålet med søknaden er å sikre pasienten tilgang til en potensielt symptomlindrende og livsforlengende behandling, som kan bidra til å bremse sykdomsprogresjon og bevare funksjonsevnen, skrev han i søknaden.

– Hun står uten behandlingsalternativer. Pasienten er kjent med og aksepterer at det for medisiner som er under utvikling, kan oppstå tidligere ukjente bivirkninger, også av alvorlig grad eller fatale.

For Kirsten ville den nye medisinen gitt håp. Men hun fikk avslag.

– Vi har mottatt tre søknader om godkjenningsfritak for ILB de siste månedene. To av sakene er fortsatt under behandling. Fordi sakene ligner på hverandre, ønsker vi ikke å uttale oss nå, sier pressevakten i Direktoratet for Medisinske Produkter til VG.

Medisinen som nå skal testes ut i Norge, er tidligere testet i et svensk/britisk prosjekt. Her er det rapportert om funksjonsforbedring hos flere pasienter og ingen alvorlige bivirkninger av den nyutviklede medisinen.

Blant ALS-syke har erfaringene til svenske Erik, en pasient i 30-årene, tent et håp.

Han har selv fortalt i svenske medier at han ble tydelig bedre etter å ha deltatt i prosjektet.

VG får opplyst at Erik er den eneste pasienten i studiet som fortsatt lever.

Beinet sviktet

Kirsten Jacobsens første symptomer på alvorlig sykdom, var et bein som svikt et.

– Etter hvert greide jeg ikke å gå lenger, sier hun.

– Det utviklet seg gradvis. Det er det som er denne sykdommen. Den er grusom. Du har gradvise tap av muskulatur hver dag. Det er nådeløst og det går sakte, sier ektemannen Tallak Thorleifsson.

Ved påsketider i 2023 kom diagnosen.

Kirsten hadde ALS.

Nesten tre år senere sitter hun i rullestolen hjemme i Oslo. Pustehjelp er blitt en del av hverdagen.

– Et siste håp

ALS-diagnosen er tung for hele familien. Håpet var et positivt svar på søknaden om å få bruke ILB.

– Det oppleves dypt urettferdig at moren vår nektes et siste forsøk, selv om hun tar både kostnad og risiko innenfor en ordning som er ment å gi håp til alvorlig syke uten behandlingsalternativer, sier datteren Tilde Thorleifsson.

– Et nei i en slik situasjon er ikke nøytralt – det er et valg om å beskytte systemet fremfor å vise medmenneskelighet.

Hun og broren Mandius har sett mamma bli stadig mer preget av sykdommen.

– Når alternativet er en sikker død, opplever vi det som etisk uforståelig at frykten for å gjøre feil veier tyngre enn viljen til å gi håp, sier datteren.

– Hvis behandlingen senere viser seg å ha effekt, vil det være tungt å leve med at hun ble nektet denne muligheten mens tiden fortsatt fantes. For meg som datter er dette først og fremst et etisk spørsmål om hvordan et system kan nekte døende et siste håp.

Forsker: – Stanset sykdomsutviklingen

Ann Logan, professor i regenerativ medisin ved University of Warwick i England, er ansvarlig for den svensk/britiske studien.

Til tidsskriftet Neurologi i Sverige, sier hun:

– Ingen andre ALS-legemidler har vist tilsvarende sykdomsmodifiserende effekter.

Hun mener ILB tilhører neste generasjons legemidler som kan beskytte og reparere sykt og skadet nerve- og muskelvev.

– Dette innebærer at det åpnes nye muligheter for å utvikle en helt ny klasse av neuroregenerative legemidler. Det vi ser kan være et paradigmeskifte ved behandling av ALS. Jeg forsvarer selvsagt arbeidet mitt med ILB fullt ut, og står bak alle uttalelser og sitater som er tillagt meg, sier professor Logan til VG.

Professor Ann Logan er forsker ved University of Warwick i England

Svenske «Neurologisk Tidskrift» skriver at prosjekt hun ledet kan ha funnet en metode som påvirker mekanismer som har betydning for utviklingen av ALS og andre nevrodegenerative sykdommer.

DMP: – Ikke godkjent og ikke forsvarlig

Direktoratet for medisinske produkter (DMP) slår fast at bruken av legemiddelet ILB ikke kan anses som forsvarlig.

DMP viser til at medisinen ikke er godkjent i noe land og kun er testet i små, tidlige fase 1- og 2-studier, uten dokumentasjon på klinisk effekt.

– Systemet er umenneskelig. De vil beskytte seg selv. Men de må ikke ta fra oss håpet, sier Tallak, Kirstens ektemann og nærmeste støtte.

  • Oslo universitetssykehus opplyser på forskningsprosjektets hjemmeside at hos ALS-pasienter har sikkerheten og den foreløpige effekten av ILB tidligere blitt undersøkt i to studier med til sammen 24 deltagere.
  • I begge studiene ble det rapportert at pasientgruppen*tålte medisinen godt*. De fleste bivirkningene var milde eller moderate, de var kortvarige og trengte liten eller ingen behandling.
  • OUS skriver at h*ensikten med prosjektet er å måle effekten og sikkerheten av ILB*sammenlignet med den nåværende standardbehandlingen, Riluzol.

– Det finnes hverken vurdering av nytte- eller risikoprofil, preparatomtale eller kvalitetssikret informasjon om dosering og bivirkninger. Usikkerheten rundt sikkerhet og effekt vurderes som betydelig. Selv ved alvorlig sykdom som ALS kan ikke manglende behandlingsalternativer oppveie kravet til dokumentasjon, skriver Direktoratet for Medisinske Produkter til VG.

Direktoratet understreker at forsvarlighetskravet er absolutt og ikke kan fravikes.

– Vilkårene for godkjenningsfritak er ikke oppfylt, skriver overlege Ingrid Aas i Direktoratet for medisinske produkter til VG.

Avslag prøves i svensk rett

– Gis ingen sjanse

Kjartan Børdal Hovgaard (52) er alvorlig ALS-syk. Via lege har også han søkt om å få bruke ILB. Kjartan har vært selvstendig næringsdrivende innen fiskeoppdrett hjemme i Sogndal.

Han er samboer og tenåringspappa.

Friluftsmannen var vant til å ferdes til fjells. I 2017 begynte han å snuble på stiene.

En venn døde av ALS i 2019. Kjartan var kjent med sykdomstegnene.

ALS rammet hardt.

– ILB er godkjent for prosjektet ved OUS. Men det godkjennes ikke for pasienter som er så syke at de har kort tid igjen hvis de ikke får medisinen. Det er blankt nei. I Norge er det mange ALS-pasienter som ikke gis en sjanse til å overleve, sier Hektor Hovgaard, Kjartans bror.

Hans nærmeste familie reagerer sterkt på at pasienter med alvorlig eller livstruende sykdom ikke får tilgang til et lovende legemiddel, når det ikke finnes andre behandlingsalternativer.

– Hvorfor bruker man ikke bestemmelsen som gir tidlig tilgang til nye medisiner? Og hvordan kan den samme medisinen være farlig utenfor en studiesetting, men trygg innenfor? Uten medisin dør Kjartan om kort tid, sier hans bror.

Advokat Max Henrik Jespersen ved Elden Advokatfirma, har på vegne av Kjartan Børdal Hovgaard klaget Direktoratet for medisinske produkter (DMP) inn for Helse- og omsorgsdepartementet.

Vil du lese mer om helse og trening? VGs magasin Helse består av 100 sider om kroppen, formen og hodet – og kan kjøpes i vår nettbutikk (fri frakt!)

🖼️ Image
Får ikke prøve banebrytende medisin: – Systemet er umenneskelig
URL: https://akamai.vgc.no/v2/images/7db5dd3a-a54c-4b98-83ad-a82730f1e3b2?format=auto&w=1080&s=337a21436b6ca87d2c6fea926657eadd2892ead7
🏷️ Tags & Keywords
Keywords: vg:helseoglivet, ALS, Sykdom, Diagnose
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   "description" : "Ny forskning gir ALS-pasienter håp. Men alvorlig syke Kirsten og Kjartan får nei til å prøve. ",
   "author" : "Anne Stine Sæther",
   "published_at" : "2026-01-25 08:57:55",
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   "content" : "Den nye medisinen som nå skal testes ut på ALS\\-syke i Norge er resultatet av et samarbeid mellom Universitetssykehuset i Göteborg og Queen Elizabeth Hospital i Birmingham i England.\n\n**Den lovende medisinen har fått navnet ILB.**\n\n– For meg er det ingen risiko ved å prøve disse medisinene. Jeg skal uansett dø, sier Kirsten Jacobsen \\(62\\).\n\n**VG har snakket med to ALS\\-syke \\- Kirsten \\(62\\) og 52\\-år gamle Kjartan Børdal Hovgaard. Ingen av dem har fått lov å delta i prosjektet, som ledes av Oslo Universitetssykehus \\(OUS\\).**\n\nBegge har også søkt om tilgang til medisinen utenom studien og fått avslag, selv om de selv foreslår at de kan betale for behandlingen.\n\nDet er ca 400 ALS\\-pasienter i Norge. I studien er det plass til 116 deltakere.\n\n– De som ikke får være med, overlates til ingen behandling og en sikker død. Jeg mener det er uetisk. De burde fått medisinen via godkjenningsfritak, eller i en egen «forskningsarm.» Er dette forsvarlig, spør Hektor Hovgaard, Kjartans bror.\n\n## Slik foregår studien:\n\n- Halvparten av de 116 deltagerne som er med i OUS\\-prosjektet får medisinen ILB, mens den andre halvdelen får Riluzol, en eksisterende medisin.\n- Riluzol beskrives som et legemiddel med svært begrenset effekt. Pasientene som deltar i studiet, vet ikke selv hva de får.\n- Prosjektet samarbeider med sykehus over hele landet.\n\n## – Oppfyller ikke kriteriene for å delta\n\n– Vi er veldig lei oss for pasienter vi må si nei til. En stor andel av ALS\\-pasientene oppfyller ikke kriteriene for å delta i studien. De er kommet for langt i sykdomsforløpet. For å delta må de ha funksjoner som kan måles, sier prosjektleder, overlege Angelina Hatlø Maniaol.\n\nHun er nevrolog ved Oslo universitetssykehus.\n\n– Vi har et håp som alle andre. Det er å finne en ny behandling, en bremsemedisin som kan forlenge livet. Pasientene blir ikke kurert. Sannsynligheten for det er veldig liten. Det beste utfallet er at vi kan bevise at ILB virker og at det kommer flere studier i etterkant av denne som tester nye produkter mot ALS.\n\nProsjektleder Angelina Hatlø Maniaol, nevrolog og overlege ved OUS\n\n## – Hun står uten behandlingsalternativer\n\nOverlege og spesialist i nevrologi, Abdullah Mohammud, søkte i oktober i fjor på vegne av Kirsten Jacobsen, om tilgang til den nye medisinen utenom OUS\\-studien, et såkalt godkjenningsfritak.\n\nLegen er tilknyttet Oslo universitetssykehus, Smerteklinikken og Colosseumklinikken.\n\n– Formålet med søknaden er å sikre pasienten tilgang til en potensielt symptomlindrende og livsforlengende behandling, som kan bidra til å bremse sykdomsprogresjon og bevare funksjonsevnen, skrev han i søknaden.\n\n**– Hun står uten behandlingsalternativer. Pasienten er kjent med og aksepterer at det for medisiner som er under utvikling, kan oppstå tidligere ukjente bivirkninger, også av alvorlig grad eller fatale.**\n\nFor Kirsten ville den nye medisinen gitt håp. Men hun fikk avslag.\n\n– Vi har mottatt tre søknader om godkjenningsfritak for ILB de siste månedene. To av sakene er fortsatt under behandling. Fordi sakene ligner på hverandre, ønsker vi ikke å uttale oss nå, sier pressevakten i Direktoratet for Medisinske Produkter til VG.\n\nMedisinen som nå skal testes ut i Norge, er tidligere testet i et svensk/britisk prosjekt. Her er det rapportert om funksjonsforbedring hos flere pasienter og ingen alvorlige bivirkninger av den nyutviklede medisinen.\n\nBlant ALS\\-syke har erfaringene til svenske Erik, en pasient i 30\\-årene, tent et håp.\n\nHan har selv fortalt i svenske medier at han ble tydelig bedre etter å ha deltatt i prosjektet.\n\nVG får opplyst at Erik er den eneste pasienten i studiet som fortsatt lever.\n\n## Beinet sviktet\n\nKirsten Jacobsens første symptomer på alvorlig sykdom, var et bein som svikt et.\n\n– Etter hvert greide jeg ikke å gå lenger, sier hun.\n\n– Det utviklet seg gradvis. Det er det som er denne sykdommen. Den er grusom. Du har gradvise tap av muskulatur hver dag. Det er nådeløst og det går sakte, sier ektemannen Tallak Thorleifsson.\n\nVed påsketider i 2023 kom diagnosen.\n\n**Kirsten hadde ALS.**\n\nNesten tre år senere sitter hun i rullestolen hjemme i Oslo. Pustehjelp er blitt en del av hverdagen.\n\n## – Et siste håp\n\nALS\\-diagnosen er tung for hele familien. Håpet var et positivt svar på søknaden om å få bruke ILB.\n\n– Det oppleves dypt urettferdig at moren vår nektes et siste forsøk, selv om hun tar både kostnad og risiko innenfor en ordning som er ment å gi håp til alvorlig syke uten behandlingsalternativer, sier datteren Tilde Thorleifsson.\n\n**– Et nei i en slik situasjon er ikke nøytralt – det er et valg om å beskytte systemet fremfor å vise medmenneskelighet.**\n\nHun og broren Mandius har sett mamma bli stadig mer preget av sykdommen.\n\n– Når alternativet er en sikker død, opplever vi det som etisk uforståelig at frykten for å gjøre feil veier tyngre enn viljen til å gi håp, sier datteren.\n\n– Hvis behandlingen senere viser seg å ha effekt, vil det være tungt å leve med at hun ble nektet denne muligheten mens tiden fortsatt fantes. For meg som datter er dette først og fremst et etisk spørsmål om hvordan et system kan nekte døende et siste håp.\n\n## Forsker: – Stanset sykdomsutviklingen\n\nAnn Logan, professor i regenerativ medisin ved University of Warwick i England, er ansvarlig for den svensk/britiske studien.\n\n[Til tidsskriftet Neurologi i Sverige, sier hun](https://www.neurologiisverige.se/wp-content/uploads/2025/02/Neurologi-i-Sverige-Nr-1-ALS-1.pdf):\n\n– Ingen andre ALS\\-legemidler har vist tilsvarende sykdomsmodifiserende effekter.\n\nHun mener ILB tilhører neste generasjons legemidler som kan beskytte og reparere sykt og skadet nerve\\- og muskelvev.\n\n– Dette innebærer at det åpnes nye muligheter for å utvikle en helt ny klasse av neuroregenerative legemidler. Det vi ser kan være et paradigmeskifte ved behandling av ALS. Jeg forsvarer selvsagt arbeidet mitt med ILB fullt ut, og står bak alle uttalelser og sitater som er tillagt meg, sier professor Logan til VG.\n\nProfessor Ann Logan er forsker ved University of Warwick i England\n\nSvenske [«Neurologisk Tidskrift»](https://neurologisktidskrift.se/sjukdomar/als/92-ny-metod-har-potentialen-att-bli-forsta-sjukdomsmodifierande-behandling-for-als.html) skriver at prosjekt hun ledet kan ha funnet en metode som påvirker mekanismer som har betydning for utviklingen av ALS og andre nevrodegenerative sykdommer.\n\n## DMP: – Ikke godkjent og ikke forsvarlig\n\nDirektoratet for medisinske produkter \\(DMP\\) slår fast at bruken av legemiddelet ILB ikke kan anses som forsvarlig.\n\nDMP viser til at medisinen ikke er godkjent i noe land og kun er testet i små, tidlige fase 1\\- og 2\\-studier, uten dokumentasjon på klinisk effekt.\n\n**– Systemet er umenneskelig. De vil beskytte seg selv. Men de må ikke ta fra oss håpet, sier Tallak, Kirstens ektemann og nærmeste støtte.**\n\n- Oslo universitetssykehus opplyser på forskningsprosjektets hjemmeside at hos ALS\\-pasienter har **sikkerheten og den foreløpige effekten av ILB tidligere blitt undersøkt i to studier med til sammen 24 deltagere.**\n- I begge studiene ble det rapportert at pasientgruppen**tålte medisinen godt**. De fleste **bivirkningene var milde eller moderate,** de var kortvarige og trengte liten eller ingen behandling.\n- OUS skriver at h**ensikten med prosjektet er å måle effekten og sikkerheten av ILB**sammenlignet med den nåværende standardbehandlingen, Riluzol.\n\n– Det finnes hverken vurdering av nytte\\- eller risikoprofil, preparatomtale eller kvalitetssikret informasjon om dosering og bivirkninger. Usikkerheten rundt sikkerhet og effekt vurderes som betydelig. Selv ved alvorlig sykdom som ALS kan ikke manglende behandlingsalternativer oppveie kravet til dokumentasjon, skriver Direktoratet for Medisinske Produkter til VG.\n\n**Direktoratet understreker at forsvarlighetskravet er absolutt og ikke kan fravikes.**\n\n– Vilkårene for godkjenningsfritak er ikke oppfylt, skriver overlege Ingrid Aas i Direktoratet for medisinske produkter til VG.\n\n## Avslag prøves i svensk rett\n\n## – Gis ingen sjanse\n\nKjartan Børdal Hovgaard \\(52\\) er alvorlig ALS\\-syk. Via lege har også han søkt om å få bruke ILB. Kjartan har vært selvstendig næringsdrivende innen fiskeoppdrett hjemme i Sogndal.\n\nHan er samboer og tenåringspappa.\n\nFriluftsmannen var vant til å ferdes til fjells. I 2017 begynte han å snuble på stiene.\n\nEn venn døde av ALS i 2019. Kjartan var kjent med sykdomstegnene.\n\nALS rammet hardt.\n\n**– ILB er godkjent for prosjektet ved OUS. Men det godkjennes ikke for pasienter som er så syke at de har kort tid igjen hvis de ikke får medisinen. Det er blankt nei. I Norge er det mange ALS\\-pasienter som ikke gis en sjanse til å overleve, sier Hektor Hovgaard, Kjartans bror.**\n\nHans nærmeste familie reagerer sterkt på at pasienter med alvorlig eller livstruende sykdom ikke får tilgang til et lovende legemiddel, når det ikke finnes andre behandlingsalternativer.\n\n– Hvorfor bruker man ikke bestemmelsen som gir tidlig tilgang til nye medisiner? Og hvordan kan den samme medisinen være farlig utenfor en studiesetting, men trygg innenfor? Uten medisin dør Kjartan om kort tid, sier hans bror.\n\nAdvokat Max Henrik Jespersen ved Elden Advokatfirma, har på vegne av Kjartan Børdal Hovgaard klaget Direktoratet for medisinske produkter \\(DMP\\) inn for Helse\\- og omsorgsdepartementet.\n\n*Vil du lese mer om helse og trening? VGs magasin Helse består av 100 sider om kroppen, formen og hodet – og kan kjøpes i vår nettbutikk \\(fri frakt!\\)*",
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<main class="article-main" data-astro-cid-jwirc66j data-horseshoe="true" data-topbanner="false" data-topboard="true" id="application"> <div class="advertory-vg-skyscraperleft_1-wrapper__article"><div class="advertory-vg-skyscraperleft_1__article" id="skyscraperleft_1"></div></div><div class="advertory-vg-topboard-wrapper__article"><div class="advertory-vg-topboard__article" id="topboard"></div></div><div data-placement-format="sponsorstripe"><div id="sponsorstripe"></div></div>  <article class="article default" data-astro-cid-jwirc66j> <header class="article-intro" style="display: contents"> <h1 class="_title_kfomj_1 _wide_kfomj_54 _small_kfomj_32 title-serif-m layout-component layout-wide layout-padded" first-child="false"><span class="_text_kfomj_58">Får ikke prøve banebrytende medisin: –⁠ Systemet er umenneskelig</span></h1><p class="_lead_o9xde_2 _lead_xtcu6_50 layout-component text-serif-m layout-normal text-serif-l layout-component layout-wide layout-padded _wide_17hqh_1 layout-padded">Ny forskning gir ALS-pasienter håp. Men alvorlig syke Kirsten og Kjartan får nei til å prøve. </p><astro-island await-children client="visible" component-export="Image" component-url="https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/Image.r_XTj6LO.js" opts="{&quot;name&quot;:&quot;Image&quot;,&quot;value&quot;:true}" prefix="r123" props="{&quot;alt&quot;:[0],&quot;caption&quot;:[0,&quot; Foto: Line Møller / 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renderer-url="https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/client.B4ukvwq6.js" ssr uid="25DRtT"><link as="image" fetchpriority="high" imagesizes="(min-width: 980px) 980px, 100vw" imagesrcset="https://akamai.vgc.no/v2/images/7db5dd3a-a54c-4b98-83ad-a82730f1e3b2?format=auto&amp;w=40&amp;s=a0e6b50dc71c7e3321fa466831c99a12925adeac 40w, https://akamai.vgc.no/v2/images/7db5dd3a-a54c-4b98-83ad-a82730f1e3b2?format=auto&amp;w=80&amp;s=a2be964f67e50ec7d894e21fbf326756af652ced 80w, https://akamai.vgc.no/v2/images/7db5dd3a-a54c-4b98-83ad-a82730f1e3b2?format=auto&amp;w=100&amp;s=7e7f1b3ff95e4e9cb848a003c09d99b3d30c164c 100w, https://akamai.vgc.no/v2/images/7db5dd3a-a54c-4b98-83ad-a82730f1e3b2?format=auto&amp;w=200&amp;s=9acfcc13b5684b93c97f07c14de37ca35067a054 200w, https://akamai.vgc.no/v2/images/7db5dd3a-a54c-4b98-83ad-a82730f1e3b2?format=auto&amp;w=240&amp;s=c2fd5796bc9686f2a7cf4536c5eb115458378253 240w, 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https://akamai.vgc.no/v2/images/7db5dd3a-a54c-4b98-83ad-a82730f1e3b2?format=auto&amp;w=1440&amp;s=204de3f83c828fc10334f54b9c5a11764937d674 1440w, https://akamai.vgc.no/v2/images/7db5dd3a-a54c-4b98-83ad-a82730f1e3b2?format=auto&amp;w=2160&amp;s=c5f95a82b4dd7801a35b068c1e75bd11f6968690 2160w" style="object-position:56.17126937984496% 44.46765988372093%" width="8256"><figcaption class="text-sans-s _caption_qp4xg_10 layout-component layout-padded"> Foto: Line Møller / VG</figcaption></figure><!--astro:end--></astro-island><section class="text-sans-s _byline_ntbth_1 layout-component layout-normal layout-padded" data-expanded-class="_expanded_ntbth_56" data-test-id="byline" id="vg-byline-container"><div class="_imageWrapper_ntbth_107"><ul aria-hidden="true" class="_images_ntbth_112"><li><a class="_link_ntbth_117" href="/forfatter/anne-stine-saether" style="z-index:2" title="Anne Stine Sæther"><figure class="_figure_ntbth_66"><img alt="Bilde av Anne Stine Sæther" class="_image_ntbth_93" decoding="async" fetchpriority="low" itemprop="image" loading="lazy" sizes="80px" src="https://akamai.vgc.no/v2/images/a12ab6a4-7bca-4b06-b64c-34e74613856a?format=auto&amp;w=40&amp;s=f8d16e7ef3ec0ec9f931b2dbe1a23be483d89640" srcset="https://akamai.vgc.no/v2/images/a12ab6a4-7bca-4b06-b64c-34e74613856a?format=auto&amp;w=40&amp;s=f8d16e7ef3ec0ec9f931b2dbe1a23be483d89640 40w, https://akamai.vgc.no/v2/images/a12ab6a4-7bca-4b06-b64c-34e74613856a?format=auto&amp;w=80&amp;s=9d22a83ef703344a3353fd5bd874293f139f299c 80w, https://akamai.vgc.no/v2/images/a12ab6a4-7bca-4b06-b64c-34e74613856a?format=auto&amp;w=100&amp;s=da952304cc3aa42690231028f31a6ef99710a727 100w, https://akamai.vgc.no/v2/images/a12ab6a4-7bca-4b06-b64c-34e74613856a?format=auto&amp;w=200&amp;s=514eb8fec7f08af53d42342265f3dc9b864975cb 200w, https://akamai.vgc.no/v2/images/a12ab6a4-7bca-4b06-b64c-34e74613856a?format=auto&amp;w=240&amp;s=69d03ae02564ca9eedce46080e7a6c56a971d802 240w, 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https://akamai.vgc.no/v2/images/86bd1337-52af-4a28-b881-46e1ce6a48f1?format=auto&amp;w=100&amp;s=faa3ad28612f7197682572cdf6e332e5b5ac7a09 100w, https://akamai.vgc.no/v2/images/86bd1337-52af-4a28-b881-46e1ce6a48f1?format=auto&amp;w=200&amp;s=a57edc31127f9fa120a6eeb0dd4019a41eebb54a 200w, https://akamai.vgc.no/v2/images/86bd1337-52af-4a28-b881-46e1ce6a48f1?format=auto&amp;w=240&amp;s=a045f674d3b2a3af2f2d0fb21b157b094410b3e0 240w, https://akamai.vgc.no/v2/images/86bd1337-52af-4a28-b881-46e1ce6a48f1?format=auto&amp;w=480&amp;s=712bdbcba5eec2b1bff0215d1d52004f67a759b7 480w" width="480"></figure></a></li></ul><button class="vg-byline-toggle _showMoreImage_ntbth_45 _hideShowMoreImage_ntbth_123"><svg aria-label="Plus" fill="none" height="24px" role="graphics-symbol" style="flex-shrink:0;height:var(--icon-size, var(--space-l));width:auto" viewbox="0 0 24 24" width="24px" xmlns="http://www.w3.org/2000/svg"><path d="M8.53978 9.4287C9.03072 9.4287 9.4287 9.03072 9.4287 8.53978V2.88892C9.4287 2.39799 9.82669 2 10.3176 2H13.6824C14.1733 2 14.5713 2.39798 14.5713 2.88892V8.53978C14.5713 9.03072 14.9693 9.4287 15.4602 9.4287H21.1111C21.602 9.4287 22 9.82669 22 10.3176V13.6824C22 14.1733 21.602 14.5713 21.1111 14.5713H15.4602C14.9693 14.5713 14.5713 14.9693 14.5713 15.4602V21.1111C14.5713 21.602 14.1733 22 13.6824 22H10.3176C9.82669 22 9.4287 21.602 9.4287 21.1111V15.4602C9.4287 14.9693 9.03072 14.5713 8.53978 14.5713H2.88893C2.39799 14.5713 2 14.1733 2 13.6824L2 10.3176C2 9.82669 2.39798 9.4287 2.88892 9.4287H8.53978Z" fill="var(--icon-color, currentColor)"></path></svg></button></div><ul class="_names_ntbth_163" data-expanded-class="_expanded_ntbth_56" id="vg-byline"><li class="text-sans-s _name_ntbth_131"><a class="_link_ntbth_117" href="/forfatter/anne-stine-saether">Anne Stine Sæther</a></li><li class="text-sans-s _name_ntbth_131"><a class="_link_ntbth_117" href="/forfatter/line-moeller-foto-2">Line Møller (foto)</a></li></ul><span class="text-sans-s _dateline_ntbth_31">Rapporterer fra Oslo</span></section> <friendly-timestamp data-options="{&quot;showUpdated&quot;:true}" style="display:contents"><time class="text-sans-s _timestamp_ktvrt_1 _friendly_ktvrt_17 layout-component layout-normal layout-padded" datetime="2026-01-25T10:15:56.000Z"><span data-nosnippet="true">Oppdatert søndag 25. januar kl. 11:15</span></time></friendly-timestamp> <div class="advertory-vg-netboard-wrapper__article"><div class="advertory-vg-netboard__article" id="netboard_1"></div></div> </header>  <section class="article-body" itemprop="articleBody" style="display: contents"> <div class="layout-component layout-padded layout-normal _tts_1njly_1" data-track-id="tts:35336" data-track-impression data-track-name="Får ikke prøve banebrytende medisin: – Systemet er umenneskelig" data-track-target-newsroom="vgtts"><astro-island await-children client="load" component-export="TTSPlayer" component-url="https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/video.ayTqLdUa.js" opts="{&quot;name&quot;:&quot;TTSPlayer&quot;,&quot;value&quot;:true}" prefix="r216" props="{&quot;assetId&quot;:[0,35336],&quot;vendor&quot;:[0,&quot;vgtts&quot;],&quot;isApp&quot;:[0,false]}" renderer-url="https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/client.B4ukvwq6.js" ssr uid="1JodWp"><div class="_svpContainer_1nwbk_1"><div id="svp-video-35336-«r216R0»"></div></div><div class="_perspective_1nwbk_11"><div class="_controls_1nwbk_16"><div class="_initial_1nwbk_33"><button aria-disabled="true" aria-label="Laster inn lytt til saken avspiller" class="_button_6bkpv_2 button-label-large _filled_6bkpv_106 _play_10x2h_9 _button_10x2h_1" data-track-click-intent="Attempt" data-track-element-type="Play Button Disabled" role="button" type="button"><svg aria-label="Play" fill="none" height="24px" role="graphics-symbol" style="flex-shrink:0;height:var(--icon-size, var(--space-l));width:auto" viewbox="0 0 24 24" width="24px" xmlns="http://www.w3.org/2000/svg"><path d="M10.4232 2.32693L18.614 11.3269C18.9613 11.7085 18.9613 12.2915 18.614 12.6731L10.4232 21.6731C10.2337 21.8813 9.9652 22 9.68364 22H7.12555C6.57325 22 6.12552 21.5523 6.12552 21L6.12552 3.00003C6.12552 2.44773 6.57325 2 7.12555 2L9.68364 2C9.9652 2 10.2337 2.1187 10.4232 2.32693Z" fill="var(--icon-color, currentColor)"></path></svg></button><p aria-hidden="true" class="_introduction_17m6h_13">Lytt til saken</p><p class="_srOnly_17m6h_1"></p></div></div></div><!--astro:end--></astro-island></div> <astro-island await-children client="idle" component-export="ArticleSummary" component-url="https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/ArticleSummary.DJkigjDt.js" opts="{&quot;name&quot;:&quot;ArticleSummary&quot;,&quot;value&quot;:true}" prefix="r21" props="{&quot;articleSummary&quot;:[1,[[0,{&quot;items&quot;:[1,[[0,{&quot;value&quot;:[0,&quot;En lovende ny medisin for ALS testes i Norge, men alvorlig syke Kirsten og Kjartan får ikke delta.&quot;],&quot;markup&quot;:[1,[]]}],[0,{&quot;value&quot;:[0,&quot;Medisinen ILB viser lovende resultater i Sverige og England, men er ikke godkjent for bruk utenfor studieoppsettet.&quot;],&quot;markup&quot;:[1,[]]}],[0,{&quot;value&quot;:[0,&quot;Familien til pasientene uttrykker frustrasjon over avslagene, som de mener tar fra dem et siste håp.&quot;],&quot;markup&quot;:[1,[]]}]]],&quot;blockType&quot;:[0,&quot;list:unordered&quot;]}]]],&quot;type&quot;:[0,&quot;news&quot;],&quot;introType&quot;:[0]}" renderer-url="https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/client.B4ukvwq6.js" ssr uid="ZhTKpj"><div class="_summary_64s2r_1 layout-component layout-normal layout-padded" data-theme="accent"><track-element data-track-element-type="Article Summary" data-track-id="article-summary" data-track-impression="" data-track-name="Article Summary"><section aria-expanded="false" aria-label="Utvid" class="_box_1mfx9_1 font-vg-sans layout-component layout-normal _box_64s2r_31" id="«r21R0»" role="region" style="max-height:var(--height)"><div class="_titleContainer_64s2r_44"><h2 class="title-serif-s _title_64s2r_44">Kortversjonen</h2><button aria-label="Vis informasjon" class="_button_6bkpv_2 button-label-large _button_64s2r_20" data-track-id="article-summary-disclaimer" data-track-name="Article Summary Disclaimer" role="button" type="button"><svg aria-label="Ai" fill="none" height="24px" role="graphics-symbol" style="flex-shrink:0;height:var(--icon-size, var(--space-l));width:auto" viewbox="0 0 24 24" width="24px" xmlns="http://www.w3.org/2000/svg"><path d="M12.4244 11.4646L17.3 13.2687V15.3201L12.4244 17.1242L10.6202 22H8.56907L6.76485 17.1242L2 15.361V13.2278L6.76485 11.4646L8.52796 6.69995H10.6613L12.4244 11.4646Z" fill="var(--icon-color, currentColor)"></path><path d="M19.6103 4.33579L22 5.22004V6.22577L19.6103 7.11012L18.7259 9.50008H17.7203L16.8359 7.11012L14.5 6.24569V5.20012L16.8359 4.33579L17.7003 2.00003H18.7459L19.6103 4.33579Z" fill="var(--icon-color, currentColor)"></path></svg></button></div><div class="_disclaimer_64s2r_50" hidden=""><span class="_text_64s2r_64" data-nosnippet="true">Oppsummeringen er laget med kunstig intelligens og<!-- --> <a href="https://www.vg.no/informasjon/redaksjonelle-avgjorelser/183">kvalitetssikret av VGs journalister.</a></span></div><ul class="_list_o9xde_3 _list_64s2r_85 _unordered_o9xde_106 text-sans-m"><li class="_item_o9xde_30">En lovende ny medisin for ALS testes i Norge, men alvorlig syke Kirsten og Kjartan får ikke delta.</li><li class="_item_o9xde_30">Medisinen ILB viser lovende resultater i Sverige og England, men er ikke godkjent for bruk utenfor studieoppsettet.</li><li class="_item_o9xde_30">Familien til pasientene uttrykker frustrasjon over avslagene, som de mener tar fra dem et siste håp.</li></ul><button aria-controls="«r21R0»" class="_button_6bkpv_2 button-label-large _hug_6bkpv_81 _filled_6bkpv_106 _button_1mfx9_76" role="button" type="button"><span>Vis <!-- -->mer</span></button></section></track-element></div><!--astro:end--></astro-island> <p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">Den nye medisinen som nå skal testes ut på ALS-syke i Norge er resultatet av et samarbeid mellom Universitetssykehuset i Göteborg og Queen Elizabeth Hospital i Birmingham i England. </p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded"><strong class="_strong_o9xde_25">Den lovende medisinen har fått navnet ILB.</strong></p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">– For meg er det ingen risiko ved å prøve disse medisinene. Jeg skal uansett dø, sier Kirsten Jacobsen (62). </p><astro-island await-children client="visible" component-export="Image" component-url="https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/Image.r_XTj6LO.js" opts="{&quot;name&quot;:&quot;Image&quot;,&quot;value&quot;:true}" prefix="r131" props="{&quot;alt&quot;:[0],&quot;caption&quot;:[0,&quot;Foto: Line Møller / 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renderer-url="https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/client.B4ukvwq6.js" ssr uid="1itm9w"><figure class="_figure_qp4xg_1 layout-component layout-normal"><img alt="Foto: Line Møller / VG" class="_image_qp4xg_65 layout-component layout-normal" data-fullscreen-sizes="(min-width: 1000px) 2000px, 2000vw" data-track-element-type="Article image fullscreen" data-track-name="ImageFullscreen" decoding="async" height="4034" itemprop="image" loading="lazy" sizes="(min-width: 980px) 980px, 100vw" src="https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=40&amp;s=6bd5910081f204a54d43b6c62773beacc8853bf8" srcset="https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=40&amp;s=6bd5910081f204a54d43b6c62773beacc8853bf8 40w, https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=80&amp;s=729ed332ee0bb060f1fe37b6dd31595fa27acc08 80w, https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=100&amp;s=3ff7b70012dfcda2608eb83100f2bbe586269e70 100w, https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=200&amp;s=0bf255d9fce94e47d2f2f68106f99add2b62667d 200w, https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=240&amp;s=27a6954c2c7c304cf5ecb9a60ef81c6be7bc3cfb 240w, https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=480&amp;s=f7faeb5a071bd7f215b3ce7e94f5536b15618af0 480w, https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=580&amp;s=668f067b66bc64c1dc42ab78b651f6c66f3cd470 580w, https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=720&amp;s=90bbefa4a74dbbcf2a86d2d2d5a04a8aa203a3b2 720w, https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=1080&amp;s=6e51e25ddd8e5b761ba9b938d939f4b90c974454 1080w, https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=1440&amp;s=ab5de627680ff5190c19e7f2217e7cc868e1dd73 1440w, https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=2160&amp;s=52be0d9919843bca11ded7e78f48ffdc56898cbc 2160w" style="object-position:0% 0%" width="5379"><figcaption class="text-sans-s _caption_qp4xg_10 layout-component layout-padded">Foto: Line Møller / VG</figcaption></figure><!--astro:end--></astro-island><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded"><strong class="_strong_o9xde_25">VG har snakket med to ALS-syke - Kirsten (62) og 52-år gamle Kjartan Børdal Hovgaard. Ingen av dem har fått lov å delta i prosjektet, som ledes av Oslo Universitetssykehus (OUS). </strong></p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">Begge har også søkt om tilgang til medisinen utenom studien og fått avslag, selv om de selv foreslår at de kan betale for behandlingen.</p><div class="advertory-vg-netboard-wrapper__article"><div class="advertory-vg-netboard__article" id="netboard_2"></div></div><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">Det er ca 400 ALS-pasienter i Norge. I studien er det plass til 116 deltakere. </p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">– De som ikke får være med, overlates til ingen behandling og en sikker død. Jeg mener det er uetisk. De burde fått medisinen via <abbr class="_explanation_o9xde_140" tabindex="0" title=" En tillatelse som kan gis for å bruke en medisin som ikke er godkjent i landet, ofte i tilfeller der det ikke finnes andre behandlingsalternativer.">godkjenningsfritak<span aria-hidden="true" class="text-sans-s _title_o9xde_151" role="presentation"><span class="text-serif-l _word_o9xde_156">godkjenningsfritak</span> En tillatelse som kan gis for å bruke en medisin som ikke er godkjent i landet, ofte i tilfeller der det ikke finnes andre behandlingsalternativer.</span></abbr>, eller i en egen «forskningsarm.» Er dette forsvarlig, spør Hektor Hovgaard, Kjartans bror.</p><astro-island await-children client="visible" component-export="Image" component-url="https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/Image.r_XTj6LO.js" opts="{&quot;name&quot;:&quot;Image&quot;,&quot;value&quot;:true}" prefix="r137" props="{&quot;alt&quot;:[0],&quot;caption&quot;:[0,&quot;Kjartan Børdal Hovgaard (52).  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Foto: Privat" class="_image_qp4xg_65 layout-component layout-normal" data-fullscreen-sizes="(min-width: 1000px) 2000px, 2000vw" data-track-element-type="Article image fullscreen" data-track-name="ImageFullscreen" decoding="async" height="1654" itemprop="image" loading="lazy" sizes="(min-width: 980px) 980px, 100vw" src="https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=40&amp;s=c505a7a8bb108b13168af5ebf699ced3598b78bb" srcset="https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=40&amp;s=c505a7a8bb108b13168af5ebf699ced3598b78bb 40w, https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=80&amp;s=dcbf6113039f147fc5a83cf9ae582c8a3e327152 80w, https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=100&amp;s=2c8bcbf7c89f0d7742e57ff08212adb170226f59 100w, https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=200&amp;s=bc3282d6f76d3fc1148a36961c7c02551ddcc1d3 200w, https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=240&amp;s=f9812d3f162be4003e24d8bc7dcffe20cd3a237d 240w, https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=480&amp;s=f10b17b5aca1854797e270c41582324a4ae16829 480w, https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=580&amp;s=c1f711210f5386815095e8c454b4996bd8f2bda1 580w, https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=720&amp;s=5f2e3856955e5866e24e5a700e0b5e8196eba724 720w, https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=1080&amp;s=535d03c1ae0d54ccfad83c77d88b60eb784fd98a 1080w, https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=1440&amp;s=965c40d041abb4b7656214f79c9703baed151466 1440w, https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=2160&amp;s=312c3e3405bb07940ac0d59ae86bb9189d86f57e 2160w" style="object-position:0% 0%" width="2204"><figcaption class="text-sans-s _caption_qp4xg_10 layout-component layout-padded">Kjartan Børdal Hovgaard (52).  Foto: Privat</figcaption></figure><!--astro:end--></astro-island><h2 class="_heading_o9xde_1 _heading_xtcu6_1 layout-component text-serif-m layout-normal text-serif-m layout-padded"><strong class="_strong_o9xde_25">Slik foregår studien: </strong></h2><ul class="_list_o9xde_3 _list_xtcu6_9 _unordered_o9xde_106 layout-component text-serif-m layout-normal text-serif-m layout-padded"><li class="_item_o9xde_30">Halvparten av de 116 deltagerne som er med i OUS-prosjektet får medisinen ILB, mens den andre halvdelen får Riluzol, en eksisterende medisin. </li><li class="_item_o9xde_30">Riluzol beskrives som et legemiddel med svært begrenset effekt. Pasientene som deltar i studiet, vet ikke selv hva de får. </li><li class="_item_o9xde_30">Prosjektet samarbeider med <abbr class="_explanation_o9xde_140" tabindex="0" title="Samarbeid med
Akershus universitetssykehus
Helse Bergen
Helse Møre og Romsdal
Helse Stavanger
Nordlandssykehuset
Sørlandet sykehus
St. Olavs hospital
Sykehuset i Vestfold
Sykehuset Innlandet
Sykehuset Telemark
Universitetssykehuset Nord-Norge
Vestre viken">sykehus over hele landet<span aria-hidden="true" class="text-sans-s _title_o9xde_151" role="presentation"><span class="text-serif-l _word_o9xde_156">sykehus over hele landet</span>Samarbeid med
Akershus universitetssykehus
Helse Bergen
Helse Møre og Romsdal
Helse Stavanger
Nordlandssykehuset
Sørlandet sykehus
St. Olavs hospital
Sykehuset i Vestfold
Sykehuset Innlandet
Sykehuset Telemark
Universitetssykehuset Nord-Norge
Vestre viken</span></abbr>.</li></ul><h2 class="_heading_o9xde_1 _heading_xtcu6_1 layout-component text-serif-m layout-normal text-serif-m layout-padded">– Oppfyller ikke kriteriene for å delta</h2><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">– Vi er veldig lei oss for pasienter vi må si nei til. En stor andel av ALS-pasientene oppfyller ikke kriteriene for å delta i studien. De er kommet for langt i sykdomsforløpet. For å delta må de ha funksjoner som kan måles, sier prosjektleder, overlege Angelina Hatlø Maniaol. </p><div class="advertory-vg-netboard-wrapper__article"><div class="advertory-vg-netboard__article" id="netboard_3"></div></div><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">Hun er <abbr class="_explanation_o9xde_140" tabindex="0" title=" En lege som er spesialist i sykdommer og lidelser i nervesystemet, inkludert hjernen, ryggmargen og nerver.">nevrolog <span aria-hidden="true" class="text-sans-s _title_o9xde_151" role="presentation"><span class="text-serif-l _word_o9xde_156">nevrolog </span> En lege som er spesialist i sykdommer og lidelser i nervesystemet, inkludert hjernen, ryggmargen og nerver.</span></abbr>ved Oslo universitetssykehus.</p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">– Vi har et håp som alle andre. Det er å finne en ny behandling, en bremsemedisin som kan forlenge livet. Pasientene blir ikke kurert. Sannsynligheten for det er veldig liten. Det beste utfallet er at vi kan bevise at <abbr class="_explanation_o9xde_140" tabindex="0" title="den nye medisinen">ILB<span aria-hidden="true" class="text-sans-s _title_o9xde_151" role="presentation"><span class="text-serif-l _word_o9xde_156">ILB</span>den nye medisinen</span></abbr> virker og at det kommer flere studier i etterkant av denne som tester nye produkter mot ALS.</p><section class="_portrait_ygndg_1 layout-component layout-normal layout-padded" data-body="false"><figure style="display:contents"><picture class="_picture_ygndg_60"><img alt="Bilde av Oslo universitetssykehus." class="_image_ygndg_42" height="37" itemprop="image" loading="lazy" sizes="480px" src="https://akamai.vgc.no/v2/images/1e5ab4bb-9a85-42c3-acf4-6199c6a246c8?format=auto&amp;w=40&amp;s=bd647799164a501d1dddfb4308d2e9997e58748c" srcset="https://akamai.vgc.no/v2/images/1e5ab4bb-9a85-42c3-acf4-6199c6a246c8?format=auto&amp;w=40&amp;s=bd647799164a501d1dddfb4308d2e9997e58748c 40w, https://akamai.vgc.no/v2/images/1e5ab4bb-9a85-42c3-acf4-6199c6a246c8?format=auto&amp;w=80&amp;s=117da01e2485714b559503f8815c4ea86fae1a3a 80w, https://akamai.vgc.no/v2/images/1e5ab4bb-9a85-42c3-acf4-6199c6a246c8?format=auto&amp;w=100&amp;s=2f4af12057a1ef1b61566368410b1ac7d2b9efe0 100w" width="40"></picture><figcaption class="_details_ygndg_24"><strong class="_name_ygndg_51 title-serif-xs">Oslo universitetssykehus.</strong><p class="_paragraph_o9xde_4 text-sans-m _description_ygndg_56">Prosjektleder Angelina Hatlø Maniaol, nevrolog og overlege ved OUS</p></figcaption></figure></section><h2 class="_heading_o9xde_1 _heading_xtcu6_1 layout-component text-serif-m layout-normal text-serif-m layout-padded"><strong class="_strong_o9xde_25">– Hun står uten behandlingsalternativer</strong></h2><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">Overlege og spesialist i nevrologi, Abdullah Mohammud, søkte i oktober i fjor på vegne av Kirsten Jacobsen, om tilgang til den nye medisinen utenom OUS-studien, et såkalt godkjenningsfritak. </p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">Legen er tilknyttet Oslo universitetssykehus, Smerteklinikken og Colosseumklinikken. </p><div class="advertory-vg-netboard-wrapper__article"><div class="advertory-vg-netboard__article" id="netboard_4"></div></div><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">– Formålet med søknaden er å sikre pasienten tilgang til en potensielt symptomlindrende og livsforlengende behandling, som kan bidra til å bremse sykdomsprogresjon og bevare funksjonsevnen, skrev han i søknaden. </p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded"><strong class="_strong_o9xde_25">– Hun står uten behandlingsalternativer. 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renderer-url="https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/client.B4ukvwq6.js" ssr uid="2e5nrO"><figure class="_figure_qp4xg_1 layout-component layout-normal"><img alt="Foto: Line Møller / VG" class="_image_qp4xg_65 layout-component layout-normal" data-fullscreen-sizes="(min-width: 1000px) 2000px, 2000vw" data-track-element-type="Article image fullscreen" data-track-name="ImageFullscreen" decoding="async" height="5504" itemprop="image" loading="lazy" sizes="(min-width: 980px) 980px, 100vw" src="https://akamai.vgc.no/v2/images/7af797c0-34a8-46c2-b31a-0ccb8d17d7e8?format=auto&amp;w=40&amp;s=916fc115dbc9f52265295dd851e3fee30b6e40a7" srcset="https://akamai.vgc.no/v2/images/7af797c0-34a8-46c2-b31a-0ccb8d17d7e8?format=auto&amp;w=40&amp;s=916fc115dbc9f52265295dd851e3fee30b6e40a7 40w, https://akamai.vgc.no/v2/images/7af797c0-34a8-46c2-b31a-0ccb8d17d7e8?format=auto&amp;w=80&amp;s=69b29b1052d777006a6ee35cdf3faede77066b99 80w, 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https://akamai.vgc.no/v2/images/7af797c0-34a8-46c2-b31a-0ccb8d17d7e8?format=auto&amp;w=1080&amp;s=7064b6ffb76f0adfa13f0de93dcf6163e5af9943 1080w, https://akamai.vgc.no/v2/images/7af797c0-34a8-46c2-b31a-0ccb8d17d7e8?format=auto&amp;w=1440&amp;s=71697e0247c287e1865585c19015eba4dc619d9c 1440w, https://akamai.vgc.no/v2/images/7af797c0-34a8-46c2-b31a-0ccb8d17d7e8?format=auto&amp;w=2160&amp;s=28ae6c9569916efe58ca6b81b9bae0080c05adfa 2160w" style="object-position:0% 0%" width="8256"><figcaption class="text-sans-s _caption_qp4xg_10 layout-component layout-padded">Foto: Line Møller / VG</figcaption></figure><!--astro:end--></astro-island><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">For Kirsten ville den nye medisinen gitt håp. Men hun fikk avslag. </p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">– Vi har mottatt tre søknader om godkjenningsfritak for ILB de siste månedene. To av sakene er fortsatt under behandling. Fordi sakene ligner på hverandre, ønsker vi ikke å uttale oss nå, sier pressevakten i Direktoratet for Medisinske Produkter til VG.</p><astro-island await-children client="visible" component-export="PollWrapper" component-url="https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/PollWrapper.CLpAz43c.js" opts="{&quot;name&quot;:&quot;Component&quot;,&quot;value&quot;:{&quot;rootMargin&quot;:&quot;100%&quot;}}" prefix="r230" props="{&quot;answers&quot;:[1,[[0,{&quot;correct&quot;:[0,false],&quot;value&quot;:[0,&quot;Ja, uten tvil&quot;]}],[0,{&quot;correct&quot;:[0,false],&quot;value&quot;:[0,&quot;Kanskje&quot;]}],[0,{&quot;correct&quot;:[0,false],&quot;value&quot;:[0,&quot;Nei&quot;]}]]],&quot;fact&quot;:[0],&quot;id&quot;:[0,&quot;k0R0V9-b3455e2d62&quot;],&quot;image&quot;:[0],&quot;question&quot;:[0,&quot;Ville du tatt en uprøvd medisin hvis du var alvorlig syk?&quot;],&quot;subtype&quot;:[0,&quot;poll&quot;],&quot;type&quot;:[0,&quot;poll&quot;],&quot;richType&quot;:[0,&quot;poll-question&quot;],&quot;isDev&quot;:[0,false],&quot;statistics&quot;:[0,{&quot;questionId&quot;:[0,&quot;k0R0V9-b3455e2d62&quot;],&quot;answers&quot;:[0,{&quot;0&quot;:[0,&quot;6598&quot;],&quot;1&quot;:[0,&quot;573&quot;],&quot;2&quot;:[0,&quot;99&quot;]}],&quot;lastUpdated&quot;:[0,1769336169143]}]}" renderer-url="https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/client.B4ukvwq6.js" ssr uid="ZEUlBu"><section class="font-vg-sans layout-component layout-normal layout-padded _poll_7u87d_1" data-theme="accent" data-track-element-type="Poll" data-track-id="poll:k0R0V9-b3455e2d62" data-track-impression="true" data-track-name="Ville du tatt en uprøvd medisin hvis du var alvorlig syk?" id="poll-k0R0V9-b3455e2d62"><form class="_form_7u87d_40" data-subtype="poll"><fieldset class="_fieldset_7u87d_34"><div class="_contents_7u87d_41"><legend class="title-serif-s _legend_7u87d_112"><span class="_quizIntro_7u87d_58"></span><span>Ville du tatt en uprøvd medisin hvis du var alvorlig syk?</span></legend><input hidden="" id="0-k0R0V9-b3455e2d62" name="k0R0V9-b3455e2d62" type="radio" value="0"><label class="_label_7u87d_17" data-track-id="poll:k0R0V9-b3455e2d62:0" data-track-name="Ja, uten tvil" for="0-k0R0V9-b3455e2d62" style="--percentage:0%" tabindex="0"><span class="_letter_7u87d_103">a</span><span class="text-sans-m _value_7u87d_140">Ja, uten tvil</span></label><input hidden="" id="1-k0R0V9-b3455e2d62" name="k0R0V9-b3455e2d62" type="radio" value="1"><label class="_label_7u87d_17" data-track-id="poll:k0R0V9-b3455e2d62:1" data-track-name="Kanskje" for="1-k0R0V9-b3455e2d62" style="--percentage:0%" tabindex="0"><span class="_letter_7u87d_103">b</span><span class="text-sans-m _value_7u87d_140">Kanskje</span></label><input hidden="" id="2-k0R0V9-b3455e2d62" name="k0R0V9-b3455e2d62" type="radio" value="2"><label class="_label_7u87d_17" data-track-id="poll:k0R0V9-b3455e2d62:2" data-track-name="Nei" for="2-k0R0V9-b3455e2d62" style="--percentage:0%" tabindex="0"><span class="_letter_7u87d_103">c</span><span class="text-sans-m _value_7u87d_140">Nei</span></label></div></fieldset></form></section><!--astro:end--></astro-island> <p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">Medisinen som nå skal testes ut i Norge, er tidligere testet i et svensk/britisk prosjekt. Her er det rapportert om funksjonsforbedring hos flere pasienter og ingen alvorlige bivirkninger av den nyutviklede medisinen. </p><div class="advertory-vg-netboard-wrapper__article"><div class="advertory-vg-netboard__article" id="netboard_5"></div></div><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">Blant ALS-syke har erfaringene til <abbr class="_explanation_o9xde_140" tabindex="0" title="https://www.neurologiisverige.se/als-medicinen-ger-erik-framtidshopp/?utm_source=chatgpt.com">svenske Erik<span aria-hidden="true" class="text-sans-s _title_o9xde_151" role="presentation"><span class="text-serif-l _word_o9xde_156">svenske Erik</span>https://www.neurologiisverige.se/als-medicinen-ger-erik-framtidshopp/?utm_source=chatgpt.com</span></abbr>, en pasient i 30-årene, tent et håp. </p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">Han har selv fortalt i svenske medier at han ble tydelig bedre etter å ha deltatt i prosjektet.  </p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">VG får opplyst at Erik er den eneste pasienten i studiet som fortsatt lever. </p><h2 class="_heading_o9xde_1 _heading_xtcu6_1 _heading_1rauo_1 layout-component text-serif-m layout-normal layout-padded" id="Beinet sviktet"> Beinet sviktet</h2><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">Kirsten Jacobsens første symptomer på alvorlig sykdom, var et bein som svikt et.</p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">– Etter hvert greide jeg ikke å gå lenger, sier hun.</p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">– Det utviklet seg gradvis. Det er det som er denne sykdommen. Den er grusom. Du har gradvise tap av muskulatur hver dag. 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https://akamai.vgc.no/v2/images/e0d7776b-9279-42e3-8d53-7eb1b76453f2?format=auto&amp;w=1080&amp;s=5ce4dcba9636246b1562a31a81361b5ed41601f4 1080w, https://akamai.vgc.no/v2/images/e0d7776b-9279-42e3-8d53-7eb1b76453f2?format=auto&amp;w=1440&amp;s=bbe391f080b8688649f66037afecd13eb7b282ae 1440w, https://akamai.vgc.no/v2/images/e0d7776b-9279-42e3-8d53-7eb1b76453f2?format=auto&amp;w=2160&amp;s=7451bbbbf478258ae5afcbe7c5bb248fad8ecca6 2160w" style="object-position:0% 0%" width="3929"><figcaption class="text-sans-s _caption_qp4xg_10 layout-component layout-padded">Foto: Line Møller / VG</figcaption></figure><!--astro:end--></astro-island><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">Ved påsketider i 2023 kom diagnosen. </p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded"><strong class="_strong_o9xde_25">Kirsten hadde ALS. </strong></p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">Nesten tre år senere sitter hun i rullestolen hjemme i Oslo. Pustehjelp er blitt en del av hverdagen. </p><h2 class="_heading_o9xde_1 _heading_xtcu6_1 _heading_1rauo_1 layout-component text-serif-m layout-normal layout-padded" id="– Et siste håp"> – Et siste håp</h2><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">ALS-diagnosen er tung for hele familien. Håpet var et positivt svar på søknaden om å få bruke ILB.</p><div class="advertory-vg-netboard-wrapper__article"><div class="advertory-vg-netboard__article" id="netboard_6"></div></div><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">– Det oppleves dypt urettferdig at moren vår nektes et siste forsøk, selv om hun tar både kostnad og risiko innenfor en ordning som er ment å gi håp til alvorlig syke uten behandlingsalternativer,  sier datteren Tilde Thorleifsson. </p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded"><strong class="_strong_o9xde_25">– Et nei i en slik situasjon er ikke nøytralt – det er et valg om å beskytte systemet fremfor å vise medmenneskelighet.</strong></p><astro-island await-children client="visible" component-export="Image" component-url="https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/Image.r_XTj6LO.js" opts="{&quot;name&quot;:&quot;Image&quot;,&quot;value&quot;:true}" prefix="r173" props="{&quot;alt&quot;:[0],&quot;caption&quot;:[0,&quot;Foto: Line Møller / 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renderer-url="https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/client.B4ukvwq6.js" ssr uid="FQC7S"><figure class="_figure_qp4xg_1 layout-component layout-normal"><img alt="Foto: Line Møller / VG" class="_image_qp4xg_65 layout-component layout-normal" data-fullscreen-sizes="(min-width: 1000px) 2000px, 2000vw" data-track-element-type="Article image fullscreen" data-track-name="ImageFullscreen" decoding="async" height="3651" itemprop="image" loading="lazy" sizes="(min-width: 980px) 980px, 100vw" src="https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=40&amp;s=627966fce50ef76c6a217f4373dc2b92092ed531" srcset="https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=40&amp;s=627966fce50ef76c6a217f4373dc2b92092ed531 40w, https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=80&amp;s=621e555f162f7f1bd60e7e4f8859420d1b1c4131 80w, https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=100&amp;s=b7f901f2655ecb954f0ff2deb4b0431d0d00e4b8 100w, https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=200&amp;s=ffbad8afa51aaeba2ee3a636945eaa7775a78b96 200w, https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=240&amp;s=6f83cdb9e97431536dbdeff1cbf3b9aa5a1731eb 240w, https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=480&amp;s=323f4826a92e7c1cdbe75967217dbb543808b027 480w, https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=580&amp;s=1e2f875acb7526aeec47f548c3f3336a3936b020 580w, https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=720&amp;s=8c493154cbc69d8b6ed49f34d06ba07f3fd9ea0f 720w, https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=1080&amp;s=35f1a532c71416f45c82d834ccbcc0eced3c124e 1080w, https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=1440&amp;s=01950fdd1ed81f519c0a3e50d2b5e2959d5a8ba3 1440w, https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=2160&amp;s=6ebaf4bcc243258763f35217203e4c59ede3379d 2160w" style="object-position:0% 0%" width="4866"><figcaption class="text-sans-s _caption_qp4xg_10 layout-component layout-padded">Foto: Line Møller / VG</figcaption></figure><!--astro:end--></astro-island><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">Hun og broren Mandius har sett mamma bli stadig mer preget av sykdommen.</p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">– Når alternativet er en sikker død, opplever vi det som etisk uforståelig at frykten for å gjøre feil veier tyngre enn viljen til å gi håp, sier datteren. </p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">– Hvis behandlingen senere viser seg å ha effekt, vil det være tungt å leve med at hun ble nektet denne muligheten mens tiden fortsatt fantes. For meg som datter er dette først og fremst et etisk spørsmål om hvordan et system kan nekte døende et siste håp.</p><h2 class="_heading_o9xde_1 _heading_xtcu6_1 _heading_1rauo_1 layout-component text-serif-m layout-normal layout-padded" id="Forsker: – Stanset sykdomsutviklingen"> Forsker: – Stanset sykdomsutviklingen</h2><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">Ann Logan, professor i <abbr class="_explanation_o9xde_140" tabindex="0" title="Nevrodegenerative sykdommer er sykdommer som rammer hjernen, ryggmargen eller perifere nerver hvor det gradvis blir en nedbryting av nervevevet.

Vanlige nevrodegenerative sykdommer som rammer hjernen er: Alzheimers sykdom, Parkinsons sykdom og Huntingtons sykdom. Nevrodegenerative sykdommer som rammer ryggmarg og perifere nerver kan være: arvelig spastisk paraparese og nevropatier.">regenerativ<span aria-hidden="true" class="text-sans-s _title_o9xde_151" role="presentation"><span class="text-serif-l _word_o9xde_156">regenerativ</span>Nevrodegenerative sykdommer er sykdommer som rammer hjernen, ryggmargen eller perifere nerver hvor det gradvis blir en nedbryting av nervevevet.

Vanlige nevrodegenerative sykdommer som rammer hjernen er: Alzheimers sykdom, Parkinsons sykdom og Huntingtons sykdom. Nevrodegenerative sykdommer som rammer ryggmarg og perifere nerver kan være: arvelig spastisk paraparese og nevropatier.</span></abbr> medisin ved University of Warwick i England, er ansvarlig for den svensk/britiske studien. </p><div class="advertory-vg-netboard-wrapper__article"><div class="advertory-vg-netboard__article" id="netboard_7"></div></div><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded"><a class="_link_o9xde_39" href="https://www.neurologiisverige.se/wp-content/uploads/2025/02/Neurologi-i-Sverige-Nr-1-ALS-1.pdf">Til tidsskriftet Neurologi i Sverige, sier hun</a>: </p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">– Ingen andre ALS-legemidler har vist tilsvarende sykdomsmodifiserende effekter. </p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">Hun mener ILB tilhører neste generasjons legemidler som kan beskytte og reparere sykt og skadet nerve- og muskelvev.</p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">– Dette innebærer at det åpnes nye muligheter for å utvikle en helt ny klasse av <abbr class="_explanation_o9xde_140" tabindex="0" title=" Medisiner som er utviklet for å beskytte, reparere eller regenerere skadet nerve- og muskelvev.">neuroregenerative <span aria-hidden="true" class="text-sans-s _title_o9xde_151" role="presentation"><span class="text-serif-l _word_o9xde_156">neuroregenerative </span> Medisiner som er utviklet for å beskytte, reparere eller regenerere skadet nerve- og muskelvev.</span></abbr>legemidler. Det vi ser kan være et <abbr class="_explanation_o9xde_140" tabindex="0" title="En grunnleggende endring i måten man tenker på eller gjør ting, ofte brukt i vitenskapelige eller teknologiske sammenhenger.">paradigmeskifte <span aria-hidden="true" class="text-sans-s _title_o9xde_151" role="presentation"><span class="text-serif-l _word_o9xde_156">paradigmeskifte </span>En grunnleggende endring i måten man tenker på eller gjør ting, ofte brukt i vitenskapelige eller teknologiske sammenhenger.</span></abbr>ved behandling av ALS. Jeg forsvarer selvsagt arbeidet mitt med ILB fullt ut, og står bak alle uttalelser og sitater som er tillagt meg, sier professor Logan til VG.</p><section class="_portrait_ygndg_1 layout-component layout-normal layout-padded" data-body="false"><figure style="display:contents"><picture class="_picture_ygndg_60"><img alt="Bilde av University of Warwick/Researchgate" class="_image_ygndg_42" height="40" itemprop="image" loading="lazy" sizes="480px" src="https://akamai.vgc.no/v2/images/56e3e362-e0d7-4444-8407-72a8c54a924f?format=auto&amp;w=40&amp;s=f23ad4aad6348de7b555671d58adf9782cecfdb9" srcset="https://akamai.vgc.no/v2/images/56e3e362-e0d7-4444-8407-72a8c54a924f?format=auto&amp;w=40&amp;s=f23ad4aad6348de7b555671d58adf9782cecfdb9 40w, https://akamai.vgc.no/v2/images/56e3e362-e0d7-4444-8407-72a8c54a924f?format=auto&amp;w=80&amp;s=7b5f0dfcf3609ae822fa049183e375e8a69b87c8 80w, https://akamai.vgc.no/v2/images/56e3e362-e0d7-4444-8407-72a8c54a924f?format=auto&amp;w=100&amp;s=7bcf3b8db94f9f3ec9496130879cbc53ee4fb1fb 100w, https://akamai.vgc.no/v2/images/56e3e362-e0d7-4444-8407-72a8c54a924f?format=auto&amp;w=200&amp;s=27812bc8fbd2f71c806baa6cbba91bed744f5d53 200w, https://akamai.vgc.no/v2/images/56e3e362-e0d7-4444-8407-72a8c54a924f?format=auto&amp;w=240&amp;s=887bfcffc343e9c1b32d8fbd08b7c55c2ee55ff8 240w, https://akamai.vgc.no/v2/images/56e3e362-e0d7-4444-8407-72a8c54a924f?format=auto&amp;w=480&amp;s=599b22a5535dbd83bab375a9d2b1d2f2e4d12f38 480w" width="40"></picture><figcaption class="_details_ygndg_24"><strong class="_name_ygndg_51 title-serif-xs">University of Warwick/Researchgate</strong><p class="_paragraph_o9xde_4 text-sans-m _description_ygndg_56">Professor Ann Logan er forsker ved University of Warwick i England</p></figcaption></figure></section><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">Svenske <a class="_link_o9xde_39" href="https://neurologisktidskrift.se/sjukdomar/als/92-ny-metod-har-potentialen-att-bli-forsta-sjukdomsmodifierande-behandling-for-als.html">«Neurologisk Tidskrift»</a> skriver at prosjekt hun ledet kan ha funnet en metode som påvirker mekanismer som har betydning for utviklingen av ALS og andre <abbr class="_explanation_o9xde_140" tabindex="0" title="Nevrodegenerative sykdommer er en gruppe lidelser der nerveceller i hjernen, ryggmargen eller perifere nerver gradvis brytes ned og dør, noe som fører til progressive tap av funksjoner. Vanlige eksempler inkluderer Alzheimers sykdom, Parkinsons sykdom, Huntingtons sykdom og ALS, som alle medfører ulike symptomer som kognitiv svikt, bevegelsesproblemer, skjelving og muskelsvakhet. Disse sykdommene kjennetegnes av at de ikke-replikerbare nervecellene går tapt over tid, og de kan være både arvelige og sporadiske">nevrodegenerative sykdommer. <span aria-hidden="true" class="text-sans-s _title_o9xde_151" role="presentation"><span class="text-serif-l _word_o9xde_156">nevrodegenerative sykdommer. </span>Nevrodegenerative sykdommer er en gruppe lidelser der nerveceller i hjernen, ryggmargen eller perifere nerver gradvis brytes ned og dør, noe som fører til progressive tap av funksjoner. Vanlige eksempler inkluderer Alzheimers sykdom, Parkinsons sykdom, Huntingtons sykdom og ALS, som alle medfører ulike symptomer som kognitiv svikt, bevegelsesproblemer, skjelving og muskelsvakhet. Disse sykdommene kjennetegnes av at de ikke-replikerbare nervecellene går tapt over tid, og de kan være både arvelige og sporadiske</span></abbr></p><h2 class="_heading_o9xde_1 _heading_xtcu6_1 _heading_1rauo_1 layout-component text-serif-m layout-normal layout-padded" id="DMP: – Ikke godkjent og ikke forsvarlig"> DMP: – Ikke godkjent og ikke forsvarlig</h2><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">Direktoratet for medisinske produkter (<abbr class="_explanation_o9xde_140" tabindex="0" title="En offentlig etat som har ansvar for å regulere og overvåke medisinske produkter, inkludert legemidler, for å sikre at de er trygge og effektive.">DMP<span aria-hidden="true" class="text-sans-s _title_o9xde_151" role="presentation"><span class="text-serif-l _word_o9xde_156">DMP</span>En offentlig etat som har ansvar for å regulere og overvåke medisinske produkter, inkludert legemidler, for å sikre at de er trygge og effektive.</span></abbr>) slår fast at bruken av legemiddelet ILB ikke kan anses som forsvarlig. </p><div class="advertory-vg-netboard-wrapper__article"><div class="advertory-vg-netboard__article" id="netboard_8"></div></div><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">DMP viser til at medisinen ikke er godkjent i noe land og kun er testet i små, tidlige fase 1- og 2-studier, uten dokumentasjon på klinisk effekt. </p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded"><strong class="_strong_o9xde_25">– Systemet er umenneskelig. De vil beskytte seg selv. Men de må ikke ta fra oss håpet, sier Tallak, Kirstens ektemann og nærmeste støtte. </strong></p><astro-island await-children client="visible" component-export="Image" component-url="https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/Image.r_XTj6LO.js" opts="{&quot;name&quot;:&quot;Image&quot;,&quot;value&quot;:true}" prefix="r191" props="{&quot;alt&quot;:[0],&quot;caption&quot;:[0,&quot;Foto: Line Møller / 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renderer-url="https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/client.B4ukvwq6.js" ssr uid="Z1YkWk1"><figure class="_figure_qp4xg_1 layout-component layout-normal"><img alt="Foto: Line Møller / VG" class="_image_qp4xg_65 layout-component layout-normal" data-fullscreen-sizes="(min-width: 1000px) 2000px, 2000vw" data-track-element-type="Article image fullscreen" data-track-name="ImageFullscreen" decoding="async" height="4558" itemprop="image" loading="lazy" sizes="(min-width: 980px) 980px, 100vw" src="https://akamai.vgc.no/v2/images/ab2453be-f4b0-4063-9986-3071031f83a9?format=auto&amp;w=40&amp;s=edc2455b7f90da9c288def8a26dcbfa4dcb1c297" srcset="https://akamai.vgc.no/v2/images/ab2453be-f4b0-4063-9986-3071031f83a9?format=auto&amp;w=40&amp;s=edc2455b7f90da9c288def8a26dcbfa4dcb1c297 40w, https://akamai.vgc.no/v2/images/ab2453be-f4b0-4063-9986-3071031f83a9?format=auto&amp;w=80&amp;s=d231fcb52d81fa2557ca2e3f4231e680763053b4 80w, https://akamai.vgc.no/v2/images/ab2453be-f4b0-4063-9986-3071031f83a9?format=auto&amp;w=100&amp;s=eb23c6740f1b7d64cfbe78f54a50ff7b2d9985ee 100w, https://akamai.vgc.no/v2/images/ab2453be-f4b0-4063-9986-3071031f83a9?format=auto&amp;w=200&amp;s=0eae3d5ae4cfa1f88fadb655bbfe9403ea4dad96 200w, https://akamai.vgc.no/v2/images/ab2453be-f4b0-4063-9986-3071031f83a9?format=auto&amp;w=240&amp;s=da9d3fe6bb573dbb44a5d5557f5edec5db223918 240w, https://akamai.vgc.no/v2/images/ab2453be-f4b0-4063-9986-3071031f83a9?format=auto&amp;w=480&amp;s=61af717e5da4f3ea5d9c9efd831a31d4d21a4fc9 480w, https://akamai.vgc.no/v2/images/ab2453be-f4b0-4063-9986-3071031f83a9?format=auto&amp;w=580&amp;s=5c3eee4042a4182a4505a68385884d9098637d95 580w, https://akamai.vgc.no/v2/images/ab2453be-f4b0-4063-9986-3071031f83a9?format=auto&amp;w=720&amp;s=f3905185461f90cd68145430eca6437fd964bf64 720w, https://akamai.vgc.no/v2/images/ab2453be-f4b0-4063-9986-3071031f83a9?format=auto&amp;w=1080&amp;s=5a90da51d5c43fedcd19e827bf69f36e02353c88 1080w, https://akamai.vgc.no/v2/images/ab2453be-f4b0-4063-9986-3071031f83a9?format=auto&amp;w=1440&amp;s=600fb62ce32b13496cf08686ee31bf17675951df 1440w, https://akamai.vgc.no/v2/images/ab2453be-f4b0-4063-9986-3071031f83a9?format=auto&amp;w=2160&amp;s=ddfab71f4e39b671d2d89d78a6135a4c2894d3f3 2160w" style="object-position:0% 0%" width="6077"><figcaption class="text-sans-s _caption_qp4xg_10 layout-component layout-padded">Foto: Line Møller / VG</figcaption></figure><!--astro:end--></astro-island><ul class="_list_o9xde_3 _list_xtcu6_9 _unordered_o9xde_106 layout-component text-serif-m layout-normal text-serif-m layout-padded"><li class="_item_o9xde_30">Oslo universitetssykehus opplyser på forskningsprosjektets hjemmeside at hos ALS-pasienter har <strong class="_strong_o9xde_25">sikkerheten og den foreløpige effekten av ILB tidligere blitt undersøkt i to studier med til sammen 24 deltagere. </strong></li><li class="_item_o9xde_30">I begge studiene ble det rapportert at pasientgruppen<strong class="_strong_o9xde_25"> tålte medisinen godt</strong>. De fleste <strong class="_strong_o9xde_25">bivirkningene var milde eller moderate,</strong> de var kortvarige og trengte liten eller ingen behandling. </li><li class="_item_o9xde_30">OUS skriver at h<strong class="_strong_o9xde_25">ensikten med prosjektet er å måle effekten og sikkerheten av ILB </strong>sammenlignet med den nåværende standardbehandlingen, Riluzol.</li></ul><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">– Det finnes hverken vurdering av nytte- eller risikoprofil, preparatomtale eller kvalitetssikret informasjon om dosering og bivirkninger. Usikkerheten rundt sikkerhet og effekt vurderes som betydelig. Selv ved alvorlig sykdom som ALS kan ikke manglende behandlingsalternativer oppveie kravet til dokumentasjon, skriver Direktoratet for Medisinske Produkter til VG. </p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded"><strong class="_strong_o9xde_25">Direktoratet understreker at forsvarlighetskravet er absolutt og ikke kan fravikes. </strong></p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">– Vilkårene for godkjenningsfritak er ikke oppfylt, skriver overlege Ingrid Aas i Direktoratet for medisinske produkter til VG.</p><h2 class="_heading_o9xde_1 _heading_xtcu6_1 _heading_1rauo_1 layout-component text-serif-m layout-normal layout-padded" id="Avslag prøves i svensk rett"> Avslag prøves i svensk rett</h2><astro-island await-children client="visible" component-export="FactBox" component-url="https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/FactBox.BF0-FmDg.js" opts="{&quot;name&quot;:&quot;FactBox&quot;,&quot;value&quot;:true}" prefix="r197" props="{&quot;component&quot;:[0,{&quot;title&quot;:[0,{&quot;value&quot;:[0,&quot;Prøves i svensk rett&quot;]}],&quot;paragraphs&quot;:[1,[[0,{&quot;text&quot;:[0,{&quot;value&quot;:[0,&quot;Björn Pilström som er administrerende direktør og medisinsk direktør ​ i Tikomed, bekrefter overfor VG at ILB kun er testet for effekt i to små fase 2-studier med totalt 24 pasienter. Det er også testet for sikkerhet i fire fase 1-studier. Sammenlagt har drøyt 90 pasienter deltatt. &quot;],&quot;markup&quot;:[1,[[0,{&quot;type&quot;:[0,&quot;style:strong&quot;],&quot;offset&quot;:[0,105],&quot;length&quot;:[0,1]}],[0,{&quot;type&quot;:[0,&quot;explanation&quot;],&quot;offset&quot;:[0,144],&quot;length&quot;:[0,15],&quot;symbol&quot;:[0,&quot;I en fase 2-studie deltar flere pasienter. Man undersøker blant annet effekt, om bivirkninger er akesptable og trygghet for pasienten.&quot;]}],[0,{&quot;type&quot;:[0,&quot;style:strong&quot;],&quot;offset&quot;:[0,144],&quot;length&quot;:[0,15]}],[0,{&quot;type&quot;:[0,&quot;explanation&quot;],&quot;offset&quot;:[0,224],&quot;length&quot;:[0,14],&quot;symbol&quot;:[0,&quot;En fase 1-studie er første gang en ny behandling testes på mennesker. Målet er å finne ut om behandlingen er trygg,  eventuelle bivirkninger og dose medsin. Det er ofte få deltakere. &quot;]}],[0,{&quot;type&quot;:[0,&quot;style:strong&quot;],&quot;offset&quot;:[0,224],&quot;length&quot;:[0,14]}]]]}],&quot;blockType&quot;:[0,&quot;paragraph&quot;]}],[0,{&quot;text&quot;:[0,{&quot;value&quot;:[0,&quot;– Jeg har ingen mening om myndighetens vurdering av hvorvidt bruk av ILB kan anses forsvarlig, men det er likevel verdt å merke seg at Oslo universitetssykehus har startet sin randomiserte fase 2-studie med litt over 100 pasienter, der den ene behandlingsgruppen får ILB, sier Pihlstrøm. &quot;],&quot;markup&quot;:[0]}],&quot;blockType&quot;:[0,&quot;paragraph&quot;]}],[0,{&quot;text&quot;:[0,{&quot;value&quot;:[0,&quot;I en randomisert fase 2-studie blir pasientene tilfeldig fordelt mellom ulike behandlinger for å undersøke effekt og bivirkninger.&quot;],&quot;markup&quot;:[0]}],&quot;blockType&quot;:[0,&quot;paragraph&quot;]}],[0,{&quot;text&quot;:[0,{&quot;value&quot;:[0,&quot;Pilstrøm bekrefter at også det svenske Legemiddelverket har avslått søknader fra ALS-pasienter som ønsker å bruke ILB. &quot;],&quot;markup&quot;:[0]}],&quot;blockType&quot;:[0,&quot;paragraph&quot;]}],[0,{&quot;text&quot;:[0,{&quot;value&quot;:[0,&quot;– Dette prøves nå for svensk domstol, sier han.&quot;],&quot;markup&quot;:[0]}],&quot;blockType&quot;:[0,&quot;paragraph&quot;]}],[0,{&quot;text&quot;:[0,{&quot;value&quot;:[0,&quot;I Forvaltningsretten i Sverige er det nylig avsagt dom mot legemiddelverket. En ALS-pasient fikk avslag på å bruke ILB på lisens og gikk til sak. Retten stilte spørsmål ved avgjørelsen og ba legemiddelverket vurdere saken på nytt. Begrunnelsen er forskningen som finnes på ILB og manglende behandlingsalternativ for pasienten.&quot;],&quot;markup&quot;:[0]}],&quot;blockType&quot;:[0,&quot;paragraph&quot;]}]]],&quot;type&quot;:[0,&quot;fact&quot;]}],&quot;type&quot;:[0,&quot;news&quot;]}" renderer-url="https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/client.B4ukvwq6.js" ssr uid="ZlDS1Y"><div class="_factbox_16v91_30 layout-component layout-normal"><section aria-expanded="false" aria-label="Utvid" class="_box_1mfx9_1 font-vg-sans layout-component layout-normal _box_16v91_39" id="«r197R0»" role="region" style="max-height:var(--height)"><h2 class="_title_16v91_25 title-serif-s">Prøves i svensk rett</h2><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 _paragraph_16v91_10 layout-component text-serif-m layout-normal text-sans-m layout-padded">Björn Pilström som er administrerende direktør og medisinsk direktør ​ i Tikomed, bekrefter overfor VG at<strong class="_strong_o9xde_25"> </strong>ILB kun er testet for effekt i to små <abbr class="_explanation_o9xde_140" tabindex="0" title="I en fase 2-studie deltar flere pasienter. Man undersøker blant annet effekt, om bivirkninger er akesptable og trygghet for pasienten."><strong class="_strong_o9xde_25">fase 2-studier </strong><span aria-hidden="true" class="text-sans-s _title_o9xde_151 _title_16v91_25" role="presentation"><span class="text-serif-l _word_o9xde_156"><strong class="_strong_o9xde_25">fase 2-studier </strong></span>I en fase 2-studie deltar flere pasienter. Man undersøker blant annet effekt, om bivirkninger er akesptable og trygghet for pasienten.</span></abbr>med totalt 24 pasienter. Det er også testet for sikkerhet i fire <abbr class="_explanation_o9xde_140" tabindex="0" title="En fase 1-studie er første gang en ny behandling testes på mennesker. Målet er å finne ut om behandlingen er trygg,  eventuelle bivirkninger og dose medsin. Det er ofte få deltakere. "><strong class="_strong_o9xde_25">fase 1-studier</strong><span aria-hidden="true" class="text-sans-s _title_o9xde_151 _title_16v91_25" role="presentation"><span class="text-serif-l _word_o9xde_156"><strong class="_strong_o9xde_25">fase 1-studier</strong></span>En fase 1-studie er første gang en ny behandling testes på mennesker. Målet er å finne ut om behandlingen er trygg,  eventuelle bivirkninger og dose medsin. Det er ofte få deltakere. </span></abbr>. Sammenlagt har drøyt 90 pasienter deltatt. </p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 _paragraph_16v91_10 layout-component text-serif-m layout-normal text-sans-m layout-padded">– Jeg har ingen mening om myndighetens vurdering av hvorvidt bruk av ILB kan anses forsvarlig, men det er likevel verdt å merke seg at Oslo universitetssykehus har startet sin randomiserte fase 2-studie med litt over 100 pasienter, der den ene behandlingsgruppen får ILB, sier Pihlstrøm. </p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 _paragraph_16v91_10 layout-component text-serif-m layout-normal text-sans-m layout-padded">I en randomisert fase 2-studie blir pasientene tilfeldig fordelt mellom ulike behandlinger for å undersøke effekt og bivirkninger.</p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 _paragraph_16v91_10 layout-component text-serif-m layout-normal text-sans-m layout-padded">Pilstrøm bekrefter at også det svenske Legemiddelverket har avslått søknader fra ALS-pasienter som ønsker å bruke ILB. </p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 _paragraph_16v91_10 layout-component text-serif-m layout-normal text-sans-m layout-padded">– Dette prøves nå for svensk domstol, sier han.</p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 _paragraph_16v91_10 layout-component text-serif-m layout-normal text-sans-m layout-padded">I Forvaltningsretten i Sverige er det nylig avsagt dom mot legemiddelverket. En ALS-pasient fikk avslag på å bruke ILB på lisens og gikk til sak. Retten stilte spørsmål ved avgjørelsen og ba legemiddelverket vurdere saken på nytt. Begrunnelsen er forskningen som finnes på ILB og manglende behandlingsalternativ for pasienten.</p><button aria-controls="«r197R0»" class="_button_6bkpv_2 button-label-large _hug_6bkpv_81 _filled_6bkpv_106 _button_1mfx9_76" data-track-element-type="Factbox" data-track-id="factbox:proeves-i-svensk-rett" data-track-impression="true" data-track-name="Prøves i svensk rett" role="button" type="button"><span>Vis <!-- -->mer</span></button></section></div><!--astro:end--></astro-island><h2 class="_heading_o9xde_1 _heading_xtcu6_1 _heading_1rauo_1 layout-component text-serif-m layout-normal layout-padded" id="– Gis ingen sjanse"> – Gis ingen sjanse</h2><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">Kjartan Børdal Hovgaard (52) er alvorlig ALS-syk. Via lege har også han søkt om å få bruke ILB. Kjartan har vært selvstendig næringsdrivende innen fiskeoppdrett hjemme i Sogndal. </p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">Han er samboer og tenåringspappa.</p><astro-island await-children client="visible" component-export="Image" component-url="https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/Image.r_XTj6LO.js" opts="{&quot;name&quot;:&quot;Image&quot;,&quot;value&quot;:true}" prefix="r201" props="{&quot;alt&quot;:[0],&quot;caption&quot;:[0,&quot;KJEMPER: Kjartan Børdal Hovgaard (t.h) er familiefar og pappa til tenåringer. Han er alvorlig syk med ALS. Broren Hektor og familien gjør alt de kan for å støtte ham. Kjartan får heller ikke medisinen ILB.   Foto: Privat&quot;],&quot;device&quot;:[0],&quot;editorialJudgment&quot;:[0],&quot;imageAsset&quot;:[0,{&quot;id&quot;:[0,&quot;6298afdc-fdc7-404f-aeeb-070b4a78206a&quot;],&quot;size&quot;:[0,{&quot;width&quot;:[0,1400],&quot;height&quot;:[0,1600]}],&quot;urls&quot;:[1,[[0,{&quot;height&quot;:[0,46],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/6298afdc-fdc7-404f-aeeb-070b4a78206a?format=auto&amp;w=40&amp;s=374a703877a0599e179cffa0fe5dc95c8cb13f76&quot;],&quot;width&quot;:[0,40]}],[0,{&quot;height&quot;:[0,91],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/6298afdc-fdc7-404f-aeeb-070b4a78206a?format=auto&amp;w=80&amp;s=e8f7e2c4a474d79b22b4bfebcf3c493d99435399&quot;],&quot;width&quot;:[0,80]}],[0,{&quot;height&quot;:[0,114],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/6298afdc-fdc7-404f-aeeb-070b4a78206a?format=auto&amp;w=100&amp;s=b5c9fba4fa24f19afb753555abbe6001edc8335d&quot;],&quot;width&quot;:[0,100]}],[0,{&quot;height&quot;:[0,229],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/6298afdc-fdc7-404f-aeeb-070b4a78206a?format=auto&amp;w=200&amp;s=3bdcf67fbcbae1164f3bb6c202d11c998d906d20&quot;],&quot;width&quot;:[0,200]}],[0,{&quot;height&quot;:[0,274],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/6298afdc-fdc7-404f-aeeb-070b4a78206a?format=auto&amp;w=240&amp;s=a2e452d20a85720025411da50daea74b9a52d1e7&quot;],&quot;width&quot;:[0,240]}],[0,{&quot;height&quot;:[0,549],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/6298afdc-fdc7-404f-aeeb-070b4a78206a?format=auto&amp;w=480&amp;s=dd73f476a326371b5ce7a6b89a09ef8aa3567e1d&quot;],&quot;width&quot;:[0,480]}],[0,{&quot;height&quot;:[0,663],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/6298afdc-fdc7-404f-aeeb-070b4a78206a?format=auto&amp;w=580&amp;s=60e06538ee4a31d6b67c5c5042e93abf747acbb1&quot;],&quot;width&quot;:[0,580]}],[0,{&quot;height&quot;:[0,823],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/6298afdc-fdc7-404f-aeeb-070b4a78206a?format=auto&amp;w=720&amp;s=9981f2c65b2f51650c8952f28fbb49a6266cd8bf&quot;],&quot;width&quot;:[0,720]}],[0,{&quot;height&quot;:[0,1234],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/6298afdc-fdc7-404f-aeeb-070b4a78206a?format=auto&amp;w=1080&amp;s=c181122072c287c9d3b3829987c9b425d18a403e&quot;],&quot;width&quot;:[0,1080]}]]]}],&quot;layout&quot;:[0],&quot;marginBottom&quot;:[0],&quot;padded&quot;:[0],&quot;type&quot;:[0,&quot;news&quot;]}" renderer-url="https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/client.B4ukvwq6.js" ssr uid="Z28cVD5"><figure class="_figure_qp4xg_1 layout-component layout-normal"><img alt="KJEMPER: Kjartan Børdal Hovgaard (t.h) er familiefar og pappa til tenåringer. Han er alvorlig syk med ALS. Broren Hektor og familien gjør alt de kan for å støtte ham. Kjartan får heller ikke medisinen ILB.   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Han er alvorlig syk med ALS. Broren Hektor og familien gjør alt de kan for å støtte ham. Kjartan får heller ikke medisinen ILB.   Foto: Privat</figcaption></figure><!--astro:end--></astro-island><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">Friluftsmannen var vant til å ferdes til fjells. I 2017 begynte han å snuble på stiene. </p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">En venn døde av ALS i 2019. Kjartan var kjent med sykdomstegnene. </p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">ALS rammet hardt.</p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded"><strong class="_strong_o9xde_25">– ILB er godkjent for prosjektet ved OUS. Men det godkjennes ikke for pasienter som er så syke at de har kort tid igjen hvis de ikke får medisinen. Det er blankt nei. I Norge er det mange ALS-pasienter som ikke gis en sjanse til å overleve, sier Hektor Hovgaard, Kjartans bror. </strong></p><astro-island await-children client="visible" component-export="Image" component-url="https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/Image.r_XTj6LO.js" opts="{&quot;name&quot;:&quot;Image&quot;,&quot;value&quot;:true}" prefix="r206" props="{&quot;alt&quot;:[0],&quot;caption&quot;:[0,&quot;FRILUFTSMANN: Kjartan Børdal Hovgaard begynte å snuble på stiene i fjellet. Det var startet på svært alvorlig sykdom.   Foto: Privat&quot;],&quot;device&quot;:[0],&quot;editorialJudgment&quot;:[0],&quot;imageAsset&quot;:[0,{&quot;id&quot;:[0,&quot;2bf18d07-5e1d-4319-ac38-eb952d37b68b&quot;],&quot;size&quot;:[0,{&quot;width&quot;:[0,1599],&quot;height&quot;:[0,1049]}],&quot;urls&quot;:[1,[[0,{&quot;height&quot;:[0,26],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=40&amp;s=c9f2430ea493e95b3cb80eda1471341aceb61827&quot;],&quot;width&quot;:[0,40]}],[0,{&quot;height&quot;:[0,52],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=80&amp;s=0b5ef7417d7ce749329b70f80a46478942963170&quot;],&quot;width&quot;:[0,80]}],[0,{&quot;height&quot;:[0,66],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=100&amp;s=54e4ec22850a5a1c24afa83e47276f0e0b84b901&quot;],&quot;width&quot;:[0,100]}],[0,{&quot;height&quot;:[0,131],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=200&amp;s=16a980425ce1b08669adabd346dd3fb5e0df011c&quot;],&quot;width&quot;:[0,200]}],[0,{&quot;height&quot;:[0,157],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=240&amp;s=5f6ca8e1f7c8d8ce51b74f44fd7ddbecec4a52da&quot;],&quot;width&quot;:[0,240]}],[0,{&quot;height&quot;:[0,315],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=480&amp;s=02e8f312aa8d0061769f541b58900d6a0505d09b&quot;],&quot;width&quot;:[0,480]}],[0,{&quot;height&quot;:[0,381],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=580&amp;s=4a9b46fad181c32b8a201b60524ce3b265e6295f&quot;],&quot;width&quot;:[0,580]}],[0,{&quot;height&quot;:[0,472],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=720&amp;s=0dacb759ba74fc969c8009f6663d76740e962da0&quot;],&quot;width&quot;:[0,720]}],[0,{&quot;height&quot;:[0,709],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=1080&amp;s=505816e86c9a39dcd8128247fdbaaa95c822e4b7&quot;],&quot;width&quot;:[0,1080]}],[0,{&quot;height&quot;:[0,945],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=1440&amp;s=8b6a2cdfd823618b5604dd83d82b1d53f8854070&quot;],&quot;width&quot;:[0,1440]}]]]}],&quot;layout&quot;:[0],&quot;marginBottom&quot;:[0],&quot;padded&quot;:[0],&quot;type&quot;:[0,&quot;news&quot;]}" renderer-url="https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/client.B4ukvwq6.js" ssr uid="Z1C6yzA"><figure class="_figure_qp4xg_1 layout-component layout-normal"><img alt="FRILUFTSMANN: Kjartan Børdal Hovgaard begynte å snuble på stiene i fjellet. Det var startet på svært alvorlig sykdom.   Foto: Privat" class="_image_qp4xg_65 layout-component layout-normal" data-fullscreen-sizes="(min-width: 1000px) 2000px, 2000vw" data-track-element-type="Article image fullscreen" data-track-name="ImageFullscreen" decoding="async" height="1049" itemprop="image" loading="lazy" sizes="(min-width: 980px) 980px, 100vw" src="https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=40&amp;s=c9f2430ea493e95b3cb80eda1471341aceb61827" srcset="https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=40&amp;s=c9f2430ea493e95b3cb80eda1471341aceb61827 40w, https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=80&amp;s=0b5ef7417d7ce749329b70f80a46478942963170 80w, https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=100&amp;s=54e4ec22850a5a1c24afa83e47276f0e0b84b901 100w, https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=200&amp;s=16a980425ce1b08669adabd346dd3fb5e0df011c 200w, https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=240&amp;s=5f6ca8e1f7c8d8ce51b74f44fd7ddbecec4a52da 240w, https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=480&amp;s=02e8f312aa8d0061769f541b58900d6a0505d09b 480w, https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=580&amp;s=4a9b46fad181c32b8a201b60524ce3b265e6295f 580w, https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=720&amp;s=0dacb759ba74fc969c8009f6663d76740e962da0 720w, https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=1080&amp;s=505816e86c9a39dcd8128247fdbaaa95c822e4b7 1080w, https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=1440&amp;s=8b6a2cdfd823618b5604dd83d82b1d53f8854070 1440w" style="object-position:0% 0%" width="1599"><figcaption class="text-sans-s _caption_qp4xg_10 layout-component layout-padded">FRILUFTSMANN: Kjartan Børdal Hovgaard begynte å snuble på stiene i fjellet. Det var startet på svært alvorlig sykdom.   Foto: Privat</figcaption></figure><!--astro:end--></astro-island><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">Hans nærmeste familie reagerer sterkt på at pasienter med alvorlig eller livstruende sykdom ikke får tilgang til et lovende legemiddel, når det ikke finnes andre behandlingsalternativer. </p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">– Hvorfor bruker man ikke bestemmelsen som gir tidlig tilgang til nye medisiner? Og hvordan kan den samme medisinen være farlig utenfor en studiesetting, men trygg innenfor? Uten medisin dør Kjartan om kort tid, sier hans bror. </p><div class="advertory-vg-netboard-wrapper__article"><div class="advertory-vg-netboard__article" id="netboard_9"></div></div><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">Advokat Max Henrik Jespersen ved Elden Advokatfirma, har på vegne av Kjartan Børdal Hovgaard klaget Direktoratet for medisinske produkter (DMP) inn for Helse- og omsorgsdepartementet.</p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded"><em class="_em_o9xde_35">Vil du lese mer om helse og trening? VGs magasin Helse består av 100 sider om kroppen, formen og hodet – og kan kjøpes i <a class="_link_o9xde_39" href="https://butikk.vg.no/products/vg-helse-januar-2026">vår nettbutikk (fri frakt!)</a></em></p><astro-island await-children client="visible" component-export="Image" component-url="https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/Image.r_XTj6LO.js" opts="{&quot;name&quot;:&quot;Image&quot;,&quot;value&quot;:true}" prefix="r212" 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hverdagen med datteren min" data-track-primary-position="2" data-track-target-newsroom="vg" data-track-target-type="Article"><article class="_article_xeowg_1 _large_xeowg_41 _overlay_xeowg_50" data-color-scheme="dark"><a class="label-primary _link_xeowg_79" data-use-overlay-player="false" href="https://www.vg.no/helse/i/Okbxgq/torkil-broedholt-54-flytter-til-sverige-for-aa-faa-medisin"><div class="_content_xeowg_30"><div class="_titleContainer_xeowg_189"><h2 class="_title_1da04_1 _large_1da04_15 title-serif-s"><span class="_text_1da04_22">– Mister hverdagen med datteren min</span></h2></div><div><ul class="_meta_xeowg_160 text-sans-xs"><li class="_item_xeowg_163"><friendly-timestamp data-options="{&quot;day&quot;:&quot;numeric&quot;,&quot;hour&quot;:false,&quot;minute&quot;:false,&quot;month&quot;:&quot;short&quot;,&quot;weekday&quot;:false,&quot;shortPastPrefix&quot;:true}" style="display:contents"><time class="_timestamp_xeowg_247" datetime="2025-12-22T18:14:05.000Z"><span 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data-track-image-url="https://akamai.vgc.no/v2/images/9b73cf58-a154-4a65-8d2d-197161604e28?format=auto&amp;w=40&amp;s=dfc819f426952aaf189c113070e117d7d56bff75" data-track-impression="" data-track-name="Enkel metode reduserte alle ADHD-symptomer: – Veldig bra" data-track-primary-position="5" data-track-target-newsroom="vg" data-track-target-type="Article"><article class="_article_xeowg_1 _small_xeowg_97"><a class="label-primary _link_xeowg_79" data-use-overlay-player="false" href="https://www.vg.no/forbruker/i/XMlr9g/enkel-metode-reduserte-alle-adhd-symptomer"><div class="_content_xeowg_30"><div class="_titleContainer_xeowg_189"><h2 class="_title_1da04_1 _small_1da04_6 title-serif-s"><span class="_text_1da04_22">Enkel metode reduserte alle ADHD-symptomer: –⁠ Veldig bra</span></h2></div><div><ul class="_meta_xeowg_160 text-sans-xs"><li class="_paywall_xeowg_180 _item_xeowg_163">VG+</li><li class="_item_xeowg_163"><friendly-timestamp data-options="{&quot;day&quot;:&quot;numeric&quot;,&quot;hour&quot;:false,&quot;minute&quot;:false,&quot;month&quot;:&quot;short&quot;,&quot;weekday&quot;:false,&quot;shortPastPrefix&quot;:true}" style="display:contents"><time class="_timestamp_xeowg_247" datetime="2025-12-16T04:43:06.000Z"><span data-nosnippet="true">16. des. 2025</span></time></friendly-timestamp></li><li class="_item_xeowg_163">6 min</li></ul></div></div><picture class="_picture_xeowg_184"><img alt="" class="_image_xeowg_63" height="1421" loading="lazy" sizes="300px" src="https://akamai.vgc.no/v2/images/9b73cf58-a154-4a65-8d2d-197161604e28?format=auto&amp;w=40&amp;s=dfc819f426952aaf189c113070e117d7d56bff75" srcset="https://akamai.vgc.no/v2/images/9b73cf58-a154-4a65-8d2d-197161604e28?format=auto&amp;w=40&amp;s=dfc819f426952aaf189c113070e117d7d56bff75 40w, https://akamai.vgc.no/v2/images/9b73cf58-a154-4a65-8d2d-197161604e28?format=auto&amp;w=80&amp;s=54bcb36d6f7165c16f875b0fd60bdc2efd27a586 80w, 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https://akamai.vgc.no/v2/images/9b73cf58-a154-4a65-8d2d-197161604e28?format=auto&amp;w=1080&amp;s=4c82a64d8165d669cccf4209fa5741d845a1a539 1080w, https://akamai.vgc.no/v2/images/9b73cf58-a154-4a65-8d2d-197161604e28?format=auto&amp;w=1440&amp;s=c31d3416e6be9665d28f5dd5c56c805cb60d583a 1440w" style="object-position:initial" width="2108"></picture></a></article></track-element><!--astro:end--></astro-island></li></ul></section>   <astro-island await-children client="visible" component-export="default" component-url="https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/AffiliateArticles.ewD1HlbZ.js" opts="{&quot;name&quot;:&quot;AffiliateArticles&quot;,&quot;value&quot;:{&quot;rootMargin&quot;:&quot;100%&quot;}}" prefix="r119" props="{&quot;articleId&quot;:[0,&quot;k0R0V9&quot;],&quot;data-astro-cid-jwirc66j&quot;:[0,true]}" renderer-url="https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/client.B4ukvwq6.js" ssr uid="16uE8D"><section class="_articles_zulis_1" data-nosnippet="true"><h3 class="_title_zulis_8 title-serif-s">Kommersielt innhold</h3></section><!--astro:end--></astro-island> <div class="advertory-vg-netboard-wrapper__article"><div class="advertory-vg-netboard__article" id="netboard_recirc_2"></div></div> <section> <h3 class="_sectionTitle_1klck_1 title-serif-s">
Kommersielt innhold
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   "article_id" : 99306,
   "author" : "Anne Stine Sæther",
   "category" : "Helse",
   "change_type" : "update",
   "content" : "Den nye medisinen som nå skal testes ut på ALS\\-syke i Norge er resultatet av et samarbeid mellom Universitetssykehuset i Göteborg og Queen Elizabeth Hospital i Birmingham i England.\n\n**Den lovende medisinen har fått navnet ILB.**\n\n– For meg er det ingen risiko ved å prøve disse medisinene. Jeg skal uansett dø, sier Kirsten Jacobsen \\(62\\).\n\n**VG har snakket med to ALS\\-syke \\- Kirsten \\(62\\) og 52\\-år gamle Kjartan Børdal Hovgaard. Ingen av dem har fått lov å delta i prosjektet, som ledes av Oslo Universitetssykehus \\(OUS\\).**\n\nBegge har også søkt om tilgang til medisinen utenom studien og fått avslag, selv om de selv foreslår at de kan betale for behandlingen.\n\nDet er ca 400 ALS\\-pasienter i Norge. I studien er det plass til 116 deltakere.\n\n– De som ikke får være med, overlates til ingen behandling og en sikker død. Jeg mener det er uetisk. De burde fått medisinen via godkjenningsfritak, eller i en egen «forskningsarm.» Er dette forsvarlig, spør Hektor Hovgaard, Kjartans bror.\n\n## Slik foregår studien:\n\n- Halvparten av de 116 deltagerne som er med i OUS\\-prosjektet får medisinen ILB, mens den andre halvdelen får Riluzol, en eksisterende medisin.\n- Riluzol beskrives som et legemiddel med svært begrenset effekt. Pasientene som deltar i studiet, vet ikke selv hva de får.\n- Prosjektet samarbeider med sykehus over hele landet.\n\n## – Oppfyller ikke kriteriene for å delta\n\n– Vi er veldig lei oss for pasienter vi må si nei til. En stor andel av ALS\\-pasientene oppfyller ikke kriteriene for å delta i studien. De er kommet for langt i sykdomsforløpet. For å delta må de ha funksjoner som kan måles, sier prosjektleder, overlege Angelina Hatlø Maniaol.\n\nHun er nevrolog ved Oslo universitetssykehus.\n\n– Vi har et håp som alle andre. Det er å finne en ny behandling, en bremsemedisin som kan forlenge livet. Pasientene blir ikke kurert. Sannsynligheten for det er veldig liten. Det beste utfallet er at vi kan bevise at ILB virker og at det kommer flere studier i etterkant av denne som tester nye produkter mot ALS.\n\nProsjektleder Angelina Hatlø Maniaol, nevrolog og overlege ved OUS\n\n## – Hun står uten behandlingsalternativer\n\nOverlege og spesialist i nevrologi, Abdullah Mohammud, søkte i oktober i fjor på vegne av Kirsten Jacobsen, om tilgang til den nye medisinen utenom OUS\\-studien, et såkalt godkjenningsfritak.\n\nLegen er tilknyttet Oslo universitetssykehus, Smerteklinikken og Colosseumklinikken.\n\n– Formålet med søknaden er å sikre pasienten tilgang til en potensielt symptomlindrende og livsforlengende behandling, som kan bidra til å bremse sykdomsprogresjon og bevare funksjonsevnen, skrev han i søknaden.\n\n**– Hun står uten behandlingsalternativer. Pasienten er kjent med og aksepterer at det for medisiner som er under utvikling, kan oppstå tidligere ukjente bivirkninger, også av alvorlig grad eller fatale.**\n\nFor Kirsten ville den nye medisinen gitt håp. Men hun fikk avslag.\n\n– Vi har mottatt tre søknader om godkjenningsfritak for ILB de siste månedene. To av sakene er fortsatt under behandling. Fordi sakene ligner på hverandre, ønsker vi ikke å uttale oss nå, sier pressevakten i Direktoratet for Medisinske Produkter til VG.\n\nMedisinen som nå skal testes ut i Norge, er tidligere testet i et svensk/britisk prosjekt. Her er det rapportert om funksjonsforbedring hos flere pasienter og ingen alvorlige bivirkninger av den nyutviklede medisinen.\n\nBlant ALS\\-syke har erfaringene til svenske Erik, en pasient i 30\\-årene, tent et håp.\n\nHan har selv fortalt i svenske medier at han ble tydelig bedre etter å ha deltatt i prosjektet.\n\nVG får opplyst at Erik er den eneste pasienten i studiet som fortsatt lever.\n\n## Beinet sviktet\n\nKirsten Jacobsens første symptomer på alvorlig sykdom, var et bein som svikt et.\n\n– Etter hvert greide jeg ikke å gå lenger, sier hun.\n\n– Det utviklet seg gradvis. Det er det som er denne sykdommen. Den er grusom. Du har gradvise tap av muskulatur hver dag. Det er nådeløst og det går sakte, sier ektemannen Tallak Thorleifsson.\n\nVed påsketider i 2023 kom diagnosen.\n\n**Kirsten hadde ALS.**\n\nNesten tre år senere sitter hun i rullestolen hjemme i Oslo. Pustehjelp er blitt en del av hverdagen.\n\n## – Et siste håp\n\nALS\\-diagnosen er tung for hele familien. Håpet var et positivt svar på søknaden om å få bruke ILB.\n\n– Det oppleves dypt urettferdig at moren vår nektes et siste forsøk, selv om hun tar både kostnad og risiko innenfor en ordning som er ment å gi håp til alvorlig syke uten behandlingsalternativer, sier datteren Tilde Thorleifsson.\n\n**– Et nei i en slik situasjon er ikke nøytralt – det er et valg om å beskytte systemet fremfor å vise medmenneskelighet.**\n\nHun og broren Mandius har sett mamma bli stadig mer preget av sykdommen.\n\n– Når alternativet er en sikker død, opplever vi det som etisk uforståelig at frykten for å gjøre feil veier tyngre enn viljen til å gi håp, sier datteren.\n\n– Hvis behandlingen senere viser seg å ha effekt, vil det være tungt å leve med at hun ble nektet denne muligheten mens tiden fortsatt fantes. For meg som datter er dette først og fremst et etisk spørsmål om hvordan et system kan nekte døende et siste håp.\n\n## Forsker: – Stanset sykdomsutviklingen\n\nAnn Logan, professor i regenerativ medisin ved University of Warwick i England, er ansvarlig for den svensk/britiske studien.\n\n[Til tidsskriftet Neurologi i Sverige, sier hun](https://www.neurologiisverige.se/wp-content/uploads/2025/02/Neurologi-i-Sverige-Nr-1-ALS-1.pdf):\n\n– Ingen andre ALS\\-legemidler har vist tilsvarende sykdomsmodifiserende effekter.\n\nHun mener ILB tilhører neste generasjons legemidler som kan beskytte og reparere sykt og skadet nerve\\- og muskelvev.\n\n– Dette innebærer at det åpnes nye muligheter for å utvikle en helt ny klasse av neuroregenerative legemidler. Det vi ser kan være et paradigmeskifte ved behandling av ALS. Jeg forsvarer selvsagt arbeidet mitt med ILB fullt ut, og står bak alle uttalelser og sitater som er tillagt meg, sier professor Logan til VG.\n\nProfessor Ann Logan er forsker ved University of Warwick i England\n\nSvenske [«Neurologisk Tidskrift»](https://neurologisktidskrift.se/sjukdomar/als/92-ny-metod-har-potentialen-att-bli-forsta-sjukdomsmodifierande-behandling-for-als.html) skriver at prosjekt hun ledet kan ha funnet en metode som påvirker mekanismer som har betydning for utviklingen av ALS og andre nevrodegenerative sykdommer.\n\n## DMP: – Ikke godkjent og ikke forsvarlig\n\nDirektoratet for medisinske produkter \\(DMP\\) slår fast at bruken av legemiddelet ILB ikke kan anses som forsvarlig.\n\nDMP viser til at medisinen ikke er godkjent i noe land og kun er testet i små, tidlige fase 1\\- og 2\\-studier, uten dokumentasjon på klinisk effekt.\n\n**– Systemet er umenneskelig. De vil beskytte seg selv. Men de må ikke ta fra oss håpet, sier Tallak, Kirstens ektemann og nærmeste støtte.**\n\n- Oslo universitetssykehus opplyser på forskningsprosjektets hjemmeside at hos ALS\\-pasienter har **sikkerheten og den foreløpige effekten av ILB tidligere blitt undersøkt i to studier med til sammen 24 deltagere.**\n- I begge studiene ble det rapportert at pasientgruppen**tålte medisinen godt**. De fleste **bivirkningene var milde eller moderate,** de var kortvarige og trengte liten eller ingen behandling.\n- OUS skriver at h**ensikten med prosjektet er å måle effekten og sikkerheten av ILB**sammenlignet med den nåværende standardbehandlingen, Riluzol.\n\n– Det finnes hverken vurdering av nytte\\- eller risikoprofil, preparatomtale eller kvalitetssikret informasjon om dosering og bivirkninger. Usikkerheten rundt sikkerhet og effekt vurderes som betydelig. Selv ved alvorlig sykdom som ALS kan ikke manglende behandlingsalternativer oppveie kravet til dokumentasjon, skriver Direktoratet for Medisinske Produkter til VG.\n\n**Direktoratet understreker at forsvarlighetskravet er absolutt og ikke kan fravikes.**\n\n– Vilkårene for godkjenningsfritak er ikke oppfylt, skriver overlege Ingrid Aas i Direktoratet for medisinske produkter til VG.\n\n## Avslag prøves i svensk rett\n\n## – Gis ingen sjanse\n\nKjartan Børdal Hovgaard \\(52\\) er alvorlig ALS\\-syk. Via lege har også han søkt om å få bruke ILB. Kjartan har vært selvstendig næringsdrivende innen fiskeoppdrett hjemme i Sogndal.\n\nHan er samboer og tenåringspappa.\n\nFriluftsmannen var vant til å ferdes til fjells. I 2017 begynte han å snuble på stiene.\n\nEn venn døde av ALS i 2019. Kjartan var kjent med sykdomstegnene.\n\nALS rammet hardt.\n\n**– ILB er godkjent for prosjektet ved OUS. Men det godkjennes ikke for pasienter som er så syke at de har kort tid igjen hvis de ikke får medisinen. Det er blankt nei. I Norge er det mange ALS\\-pasienter som ikke gis en sjanse til å overleve, sier Hektor Hovgaard, Kjartans bror.**\n\nHans nærmeste familie reagerer sterkt på at pasienter med alvorlig eller livstruende sykdom ikke får tilgang til et lovende legemiddel, når det ikke finnes andre behandlingsalternativer.\n\n– Hvorfor bruker man ikke bestemmelsen som gir tidlig tilgang til nye medisiner? Og hvordan kan den samme medisinen være farlig utenfor en studiesetting, men trygg innenfor? Uten medisin dør Kjartan om kort tid, sier hans bror.\n\nAdvokat Max Henrik Jespersen ved Elden Advokatfirma, har på vegne av Kjartan Børdal Hovgaard klaget Direktoratet for medisinske produkter \\(DMP\\) inn for Helse\\- og omsorgsdepartementet.\n\n*Vil du lese mer om helse og trening? VGs magasin Helse består av 100 sider om kroppen, formen og hodet – og kan kjøpes i vår nettbutikk \\(fri frakt!\\)*",
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   "metadata" : "{\"keywords\":[\"vg:helseoglivet\",\"ALS\",\"Sykdom\",\"Diagnose\"],\"category\":\"Helse\",\"description\":\"Ny forskning gir ALS-pasienter håp. Men alvorlig syke Kirsten og Kjartan får nei til å prøve. \",\"og\":{\"type\":\"article\",\"image\":\"https://akamai.vgc.no/v2/images/7db5dd3a-a54c-4b98-83ad-a82730f1e3b2?format=auto&w=1080&s=337a21436b6ca87d2c6fea926657eadd2892ead7\",\"url\":\"https://www.vg.no/helse/i/k0R0V9/als-syke-kirsten-og-kjartan-fikk-nei-til-lovende-medisin\",\"site_name\":\"VG\",\"title\":\"Får ikke prøve banebrytende medisin: – Systemet er umenneskelig\",\"description\":\"Ny forskning gir ALS-pasienter håp. Men alvorlig syke Kirsten og Kjartan får nei til å prøve. \"},\"published_at\":\"2026-01-25 08:57:55\",\"schema\":{\"microdata\":{\"datePublished\":\"Publisert: 25.01.26 kl. 09:57\",\"articleBody\":\"        \",\"dateModified\":\"Oppdatert: 25.01.26 kl. 11:15\"}},\"meta\":{\"publisheddate\":\"2026-01-25\",\"keywords\":\"vg:helseoglivet, ALS, Sykdom, Diagnose\",\"description\":\"Ny forskning gir ALS-pasienter håp. Men alvorlig syke Kirsten og Kjartan får nei til å prøve. \",\"baggage\":\"sentry-environment=production,sentry-release=vgno-artikkel%40aae3e2430,sentry-public_key=2d8dce823c094e8b9733997b0bdf3f86,sentry-trace_id=481b306474c0ffd6837f937ff565a405,sentry-sampled=false,sentry-sample_rand=0.6890351504527513,sentry-sample_rate=0\",\"sentry-trace\":\"481b306474c0ffd6837f937ff565a405-ada7e0edd7815646-0\",\"viewport\":\"width=device-width, initial-scale=1\",\"robots\":\"max-image-preview:large, noarchive\"},\"content\":\"Den nye medisinen som nå skal testes ut på ALS\\\\-syke i Norge er resultatet av et samarbeid mellom Universitetssykehuset i Göteborg og Queen Elizabeth Hospital i Birmingham i England.\\n\\n**Den lovende medisinen har fått navnet ILB.**\\n\\n– For meg er det ingen risiko ved å prøve disse medisinene. Jeg skal uansett dø, sier Kirsten Jacobsen \\\\(62\\\\).\\n\\n**VG har snakket med to ALS\\\\-syke \\\\- Kirsten \\\\(62\\\\) og 52\\\\-år gamle Kjartan Børdal Hovgaard. Ingen av dem har fått lov å delta i prosjektet, som ledes av Oslo Universitetssykehus \\\\(OUS\\\\).**\\n\\nBegge har også søkt om tilgang til medisinen utenom studien og fått avslag, selv om de selv foreslår at de kan betale for behandlingen.\\n\\nDet er ca 400 ALS\\\\-pasienter i Norge. I studien er det plass til 116 deltakere.\\n\\n– De som ikke får være med, overlates til ingen behandling og en sikker død. Jeg mener det er uetisk. De burde fått medisinen via godkjenningsfritak, eller i en egen «forskningsarm.» Er dette forsvarlig, spør Hektor Hovgaard, Kjartans bror.\\n\\n## Slik foregår studien:\\n\\n- Halvparten av de 116 deltagerne som er med i OUS\\\\-prosjektet får medisinen ILB, mens den andre halvdelen får Riluzol, en eksisterende medisin.\\n- Riluzol beskrives som et legemiddel med svært begrenset effekt. Pasientene som deltar i studiet, vet ikke selv hva de får.\\n- Prosjektet samarbeider med sykehus over hele landet.\\n\\n## – Oppfyller ikke kriteriene for å delta\\n\\n– Vi er veldig lei oss for pasienter vi må si nei til. En stor andel av ALS\\\\-pasientene oppfyller ikke kriteriene for å delta i studien. De er kommet for langt i sykdomsforløpet. For å delta må de ha funksjoner som kan måles, sier prosjektleder, overlege Angelina Hatlø Maniaol.\\n\\nHun er nevrolog ved Oslo universitetssykehus.\\n\\n– Vi har et håp som alle andre. Det er å finne en ny behandling, en bremsemedisin som kan forlenge livet. Pasientene blir ikke kurert. Sannsynligheten for det er veldig liten. Det beste utfallet er at vi kan bevise at ILB virker og at det kommer flere studier i etterkant av denne som tester nye produkter mot ALS.\\n\\nProsjektleder Angelina Hatlø Maniaol, nevrolog og overlege ved OUS\\n\\n## – Hun står uten behandlingsalternativer\\n\\nOverlege og spesialist i nevrologi, Abdullah Mohammud, søkte i oktober i fjor på vegne av Kirsten Jacobsen, om tilgang til den nye medisinen utenom OUS\\\\-studien, et såkalt godkjenningsfritak.\\n\\nLegen er tilknyttet Oslo universitetssykehus, Smerteklinikken og Colosseumklinikken.\\n\\n– Formålet med søknaden er å sikre pasienten tilgang til en potensielt symptomlindrende og livsforlengende behandling, som kan bidra til å bremse sykdomsprogresjon og bevare funksjonsevnen, skrev han i søknaden.\\n\\n**– Hun står uten behandlingsalternativer. Pasienten er kjent med og aksepterer at det for medisiner som er under utvikling, kan oppstå tidligere ukjente bivirkninger, også av alvorlig grad eller fatale.**\\n\\nFor Kirsten ville den nye medisinen gitt håp. Men hun fikk avslag.\\n\\n– Vi har mottatt tre søknader om godkjenningsfritak for ILB de siste månedene. To av sakene er fortsatt under behandling. Fordi sakene ligner på hverandre, ønsker vi ikke å uttale oss nå, sier pressevakten i Direktoratet for Medisinske Produkter til VG.\\n\\nMedisinen som nå skal testes ut i Norge, er tidligere testet i et svensk/britisk prosjekt. Her er det rapportert om funksjonsforbedring hos flere pasienter og ingen alvorlige bivirkninger av den nyutviklede medisinen.\\n\\nBlant ALS\\\\-syke har erfaringene til svenske Erik, en pasient i 30\\\\-årene, tent et håp.\\n\\nHan har selv fortalt i svenske medier at han ble tydelig bedre etter å ha deltatt i prosjektet.\\n\\nVG får opplyst at Erik er den eneste pasienten i studiet som fortsatt lever.\\n\\n## Beinet sviktet\\n\\nKirsten Jacobsens første symptomer på alvorlig sykdom, var et bein som svikt et.\\n\\n– Etter hvert greide jeg ikke å gå lenger, sier hun.\\n\\n– Det utviklet seg gradvis. Det er det som er denne sykdommen. Den er grusom. Du har gradvise tap av muskulatur hver dag. Det er nådeløst og det går sakte, sier ektemannen Tallak Thorleifsson.\\n\\nVed påsketider i 2023 kom diagnosen.\\n\\n**Kirsten hadde ALS.**\\n\\nNesten tre år senere sitter hun i rullestolen hjemme i Oslo. Pustehjelp er blitt en del av hverdagen.\\n\\n## – Et siste håp\\n\\nALS\\\\-diagnosen er tung for hele familien. Håpet var et positivt svar på søknaden om å få bruke ILB.\\n\\n– Det oppleves dypt urettferdig at moren vår nektes et siste forsøk, selv om hun tar både kostnad og risiko innenfor en ordning som er ment å gi håp til alvorlig syke uten behandlingsalternativer, sier datteren Tilde Thorleifsson.\\n\\n**– Et nei i en slik situasjon er ikke nøytralt – det er et valg om å beskytte systemet fremfor å vise medmenneskelighet.**\\n\\nHun og broren Mandius har sett mamma bli stadig mer preget av sykdommen.\\n\\n– Når alternativet er en sikker død, opplever vi det som etisk uforståelig at frykten for å gjøre feil veier tyngre enn viljen til å gi håp, sier datteren.\\n\\n– Hvis behandlingen senere viser seg å ha effekt, vil det være tungt å leve med at hun ble nektet denne muligheten mens tiden fortsatt fantes. For meg som datter er dette først og fremst et etisk spørsmål om hvordan et system kan nekte døende et siste håp.\\n\\n## Forsker: – Stanset sykdomsutviklingen\\n\\nAnn Logan, professor i regenerativ medisin ved University of Warwick i England, er ansvarlig for den svensk/britiske studien.\\n\\n[Til tidsskriftet Neurologi i Sverige, sier hun](https://www.neurologiisverige.se/wp-content/uploads/2025/02/Neurologi-i-Sverige-Nr-1-ALS-1.pdf):\\n\\n– Ingen andre ALS\\\\-legemidler har vist tilsvarende sykdomsmodifiserende effekter.\\n\\nHun mener ILB tilhører neste generasjons legemidler som kan beskytte og reparere sykt og skadet nerve\\\\- og muskelvev.\\n\\n– Dette innebærer at det åpnes nye muligheter for å utvikle en helt ny klasse av neuroregenerative legemidler. Det vi ser kan være et paradigmeskifte ved behandling av ALS. Jeg forsvarer selvsagt arbeidet mitt med ILB fullt ut, og står bak alle uttalelser og sitater som er tillagt meg, sier professor Logan til VG.\\n\\nProfessor Ann Logan er forsker ved University of Warwick i England\\n\\nSvenske [«Neurologisk Tidskrift»](https://neurologisktidskrift.se/sjukdomar/als/92-ny-metod-har-potentialen-att-bli-forsta-sjukdomsmodifierande-behandling-for-als.html) skriver at prosjekt hun ledet kan ha funnet en metode som påvirker mekanismer som har betydning for utviklingen av ALS og andre nevrodegenerative sykdommer.\\n\\n## DMP: – Ikke godkjent og ikke forsvarlig\\n\\nDirektoratet for medisinske produkter \\\\(DMP\\\\) slår fast at bruken av legemiddelet ILB ikke kan anses som forsvarlig.\\n\\nDMP viser til at medisinen ikke er godkjent i noe land og kun er testet i små, tidlige fase 1\\\\- og 2\\\\-studier, uten dokumentasjon på klinisk effekt.\\n\\n**– Systemet er umenneskelig. De vil beskytte seg selv. Men de må ikke ta fra oss håpet, sier Tallak, Kirstens ektemann og nærmeste støtte.**\\n\\n- Oslo universitetssykehus opplyser på forskningsprosjektets hjemmeside at hos ALS\\\\-pasienter har **sikkerheten og den foreløpige effekten av ILB tidligere blitt undersøkt i to studier med til sammen 24 deltagere.**\\n- I begge studiene ble det rapportert at pasientgruppen**tålte medisinen godt**. De fleste **bivirkningene var milde eller moderate,** de var kortvarige og trengte liten eller ingen behandling.\\n- OUS skriver at h**ensikten med prosjektet er å måle effekten og sikkerheten av ILB**sammenlignet med den nåværende standardbehandlingen, Riluzol.\\n\\n– Det finnes hverken vurdering av nytte\\\\- eller risikoprofil, preparatomtale eller kvalitetssikret informasjon om dosering og bivirkninger. Usikkerheten rundt sikkerhet og effekt vurderes som betydelig. Selv ved alvorlig sykdom som ALS kan ikke manglende behandlingsalternativer oppveie kravet til dokumentasjon, skriver Direktoratet for Medisinske Produkter til VG.\\n\\n**Direktoratet understreker at forsvarlighetskravet er absolutt og ikke kan fravikes.**\\n\\n– Vilkårene for godkjenningsfritak er ikke oppfylt, skriver overlege Ingrid Aas i Direktoratet for medisinske produkter til VG.\\n\\n## Avslag prøves i svensk rett\\n\\n## – Gis ingen sjanse\\n\\nKjartan Børdal Hovgaard \\\\(52\\\\) er alvorlig ALS\\\\-syk. Via lege har også han søkt om å få bruke ILB. Kjartan har vært selvstendig næringsdrivende innen fiskeoppdrett hjemme i Sogndal.\\n\\nHan er samboer og tenåringspappa.\\n\\nFriluftsmannen var vant til å ferdes til fjells. I 2017 begynte han å snuble på stiene.\\n\\nEn venn døde av ALS i 2019. Kjartan var kjent med sykdomstegnene.\\n\\nALS rammet hardt.\\n\\n**– ILB er godkjent for prosjektet ved OUS. Men det godkjennes ikke for pasienter som er så syke at de har kort tid igjen hvis de ikke får medisinen. Det er blankt nei. I Norge er det mange ALS\\\\-pasienter som ikke gis en sjanse til å overleve, sier Hektor Hovgaard, Kjartans bror.**\\n\\nHans nærmeste familie reagerer sterkt på at pasienter med alvorlig eller livstruende sykdom ikke får tilgang til et lovende legemiddel, når det ikke finnes andre behandlingsalternativer.\\n\\n– Hvorfor bruker man ikke bestemmelsen som gir tidlig tilgang til nye medisiner? Og hvordan kan den samme medisinen være farlig utenfor en studiesetting, men trygg innenfor? Uten medisin dør Kjartan om kort tid, sier hans bror.\\n\\nAdvokat Max Henrik Jespersen ved Elden Advokatfirma, har på vegne av Kjartan Børdal Hovgaard klaget Direktoratet for medisinske produkter \\\\(DMP\\\\) inn for Helse\\\\- og omsorgsdepartementet.\\n\\n*Vil du lese mer om helse og trening? VGs magasin Helse består av 100 sider om kroppen, formen og hodet – og kan kjøpes i vår nettbutikk \\\\(fri frakt!\\\\)*\",\"source_updated_at\":\"2026-01-25 10:15:56\",\"image_url\":\"https://akamai.vgc.no/v2/images/7db5dd3a-a54c-4b98-83ad-a82730f1e3b2?format=auto&w=1080&s=337a21436b6ca87d2c6fea926657eadd2892ead7\",\"raw_feed_item\":\"<item><title>Får ikke prøve banebrytende medisin: – Systemet er umenneskelig</title><pubDate>Sun, 25 Jan 2026 08:57:55 GMT</pubDate><description>Ny forskning gir ALS-pasienter håp. 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   "published_at" : "2026-01-25 08:57:55",
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href=\"https://www.vg.no/tilbud?utm_source=vgfront-header\">Januarsalg<svg class=\"_icon_bazfm_3\" id=\"Annonse_-_sort_svg__Layer_2\" viewbox=\"0 0 102.46 34.19\" xmlns=\"http://www.w3.org/2000/svg\"><g><path d=\"M97.49 33.88c.28-.46-.32-.3-.35-.55 1.33.1.26-1.1.85-1.29-.72-.1-1.38-.23-1.87-.49.82.08 1.56.23 1.89.36.37-.52.45-1.38.68-2.08-.88-.17-1.58-.47-2.55-.58-.91-1.54.61-2.29 1.11-2.23.16-.49.17-.05.22-.66-1.97-.65-.29-.11-2.25-.77.04-.43.07-.88.4-.97.77.06 1.37.24 1.87.49 1.14-1.3-.7-2.11 1.6-3.95.34.06.39.29.68.09.26-.65.68-2.69.96-3.31.34-.76.54-.09.81-.93.09-.29-.63 0-.36-.43.27-1.29 1.38-2.26 1.27-3.54C86.91 8.28 15.49-3.31 2.85.91c-.19.94.07 1.55.13 2.31-.23.16-.78-.06-.74.42.4 1.41-.32 1.46-.35 2.79-.02.84.72 1.78.09 2.56-.42-.02-.79.03-1.12.11.33 1.59-.44 4.47-.85 5.7.62.46.6.92.32 1.82.23.35.47 1.77.35 2.72-.55.69-.28 2.8-.56 3.87 18.33-4.76 84.08 7.48 95.31 10.66.81.14 1.69.63 2.07 0Z\" style=\"fill-rule:evenodd\"></path><path d=\"m16.8 15.14 4.78-9.17 1.6.21 2.28 10.09-1.55-.2-1.89-8.97.4.05-4.15 8.18-1.46-.19Zm2.39-2.42.15-1.15 4.6.6-.15 1.15zM26.77 16.44l1.25-9.63 1.66.22 4.13 9.08-.6.66 1.19-9.12 1.35.18-1.25 9.63-1.59-.21-4.18-9.15.55-.4-1.16 8.93-1.35-.18ZM36.8 17.74l1.25-9.63 1.66.22 4.13 9.08-.6.66 1.19-9.12 1.35.18-1.25 9.63-1.59-.21-4.18-9.15.55-.4-1.16 8.93-1.35-.18ZM50.8 19.7c-.9-.12-1.67-.43-2.29-.93s-1.08-1.15-1.36-1.94-.36-1.68-.23-2.67.43-1.84.91-2.52c.47-.69 1.08-1.2 1.81-1.52s1.55-.43 2.45-.31 1.68.43 2.3.93 1.07 1.15 1.35 1.94.36 1.68.23 2.67-.43 1.82-.9 2.52c-.48.69-1.08 1.2-1.81 1.53s-1.55.43-2.46.31Zm.16-1.24q.975.12 1.71-.24c.49-.24.89-.63 1.2-1.15s.51-1.17.61-1.92.07-1.43-.1-2.02c-.16-.59-.45-1.06-.87-1.42-.41-.36-.94-.58-1.59-.67s-1.22 0-1.71.24-.89.63-1.2 1.15c-.31.53-.51 1.17-.61 1.92s-.07 1.43.1 2.02c.16.59.45 1.06.87 1.42.41.36.94.58 1.59.67M57.11 20.38l1.25-9.63 1.66.22 4.13 9.08-.6.66 1.19-9.12 1.35.18-1.25 9.63-1.59-.21-4.18-9.15.55-.4-1.16 8.93-1.35-.18ZM70.09 22.21c-.71-.09-1.32-.31-1.82-.64s-.87-.76-1.11-1.28-.31-1.1-.24-1.74l1.41.18c-.06.59.08 1.09.42 1.52.34.42.85.68 1.55.77.6.08 1.11 0 1.53-.22.42-.23.66-.57.72-1.04.04-.34-.02-.62-.19-.85s-.41-.43-.72-.59-.65-.32-1.02-.47-.75-.3-1.11-.47c-.37-.17-.7-.37-1-.6s-.53-.51-.68-.84c-.16-.33-.2-.73-.14-1.21.07-.57.28-1.04.62-1.43s.79-.67 1.33-.85 1.14-.22 1.8-.13 1.24.29 1.71.6.81.71 1.03 1.2.31 1.04.24 1.65l-1.41-.18c.06-.55-.07-1.01-.4-1.39s-.8-.61-1.42-.69c-.56-.07-1.02 0-1.39.22s-.58.54-.64.97c-.04.33.02.6.19.82s.41.41.72.58.65.32 1.02.47.75.31 1.12.48.71.38 1.01.61.53.52.68.86.2.75.14 1.24c-.08.58-.29 1.08-.65 1.48s-.82.69-1.39.87-1.2.22-1.91.13ZM75.42 22.77l1.25-9.63 6.67.87-.16 1.22-5.22-.68-.37 2.82 4.77.62-.16 1.22-4.77-.62-.41 3.16 5.29.69-.16 1.22-6.74-.88Z\" fill=\"#fff\"></path></g></svg></a></li></ul></section><section class=\"_sections_y9n8e_19\"><h3 class=\"_title_y9n8e_59 font-weight-semi-bold label-secondary label-small text-transform-uppercase\">Innhold</h3><ul><li class=\"_section_y9n8e_7\"><a class=\"_link_y9n8e_1\" href=\"https://www.vg.no/nyheter\"><h4 class=\"_name_y9n8e_68 font-weight-semi-bold title-large\">Nyheter</h4></a><button class=\"_button_6bkpv_2 button-label-large _toggle_y9n8e_63\" role=\"button\" type=\"button\"><svg aria-label=\"Chevron Down\" fill=\"none\" height=\"24px\" role=\"graphics-symbol\" style=\"flex-shrink:0;height:var(--icon-size, var(--space-l));width:auto\" viewbox=\"0 0 24 24\" width=\"24px\" xmlns=\"http://www.w3.org/2000/svg\"><path d=\"M19.9257 8.76641C20.0246 8.86527 20.0245 9.02589 19.9257 9.12481C17.4604 11.5901 14.9948 14.0553 12.5302 16.5213C12.2373 16.8143 11.7626 16.8142 11.4697 16.5213L4.07417 9.12579C3.97545 9.0269 3.97543 8.86626 4.07417 8.76739L5.50874 7.33379C5.60765 7.23488 5.76823 7.23488 5.86714 7.33379L11.8212 13.2879C11.92 13.3861 12.0799 13.3862 12.1787 13.2879L18.1337 7.33282C18.2327 7.23406 18.3933 7.23396 18.4921 7.33282L19.9257 8.76641Z\" fill=\"var(--icon-color, currentColor)\"></path></svg></button><ul class=\"_subsections_y9n8e_34\" hidden=\"\"><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://www.vg.no/tag/invasjonen-av-ukraina\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Krigen i Ukraina</h5></a></li><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://www.vg.no/tag/israel-palestina\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Israel og Palestina</h5></a></li><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://www.vg.no/spesial/oversikt\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Spesialer</h5></a></li><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://www.vg.no/spesial/skattelister\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Skattelister</h5></a></li><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://www.vg.no/valg/norge/2025/resultater/st\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Valgresultater 2025</h5></a></li></ul></li><li class=\"_section_y9n8e_7\"><a class=\"_link_y9n8e_1\" href=\"https://www.vg.no/sport\"><h4 class=\"_name_y9n8e_68 font-weight-semi-bold title-large\">Sport</h4></a><button class=\"_button_6bkpv_2 button-label-large _toggle_y9n8e_63\" role=\"button\" type=\"button\"><svg aria-label=\"Chevron Down\" fill=\"none\" height=\"24px\" role=\"graphics-symbol\" style=\"flex-shrink:0;height:var(--icon-size, var(--space-l));width:auto\" viewbox=\"0 0 24 24\" width=\"24px\" xmlns=\"http://www.w3.org/2000/svg\"><path d=\"M19.9257 8.76641C20.0246 8.86527 20.0245 9.02589 19.9257 9.12481C17.4604 11.5901 14.9948 14.0553 12.5302 16.5213C12.2373 16.8143 11.7626 16.8142 11.4697 16.5213L4.07417 9.12579C3.97545 9.0269 3.97543 8.86626 4.07417 8.76739L5.50874 7.33379C5.60765 7.23488 5.76823 7.23488 5.86714 7.33379L11.8212 13.2879C11.92 13.3861 12.0799 13.3862 12.1787 13.2879L18.1337 7.33282C18.2327 7.23406 18.3933 7.23396 18.4921 7.33282L19.9257 8.76641Z\" fill=\"var(--icon-color, currentColor)\"></path></svg></button><ul class=\"_subsections_y9n8e_34\" hidden=\"\"><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://vglive.vg.no\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">VG Live</h5></a></li><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://vglive.vg.no/profeten/kamper\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Profeten</h5></a></li><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://tvguide.vg.no/sport\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Sportskalender</h5></a></li><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://www.vg.no/tag/fotball\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Fotball</h5></a></li><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://www.vg.no/tag/friidrett\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Friidrett</h5></a></li><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://www.travguiden.no\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Travguiden.no<span class=\"_badge_3dicf_1 label-small\">Annonsørinnhold</span></h5></a></li><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://www.vg.no/tag/golf\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Golf</h5></a></li><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://www.vg.no/tag/motorsport\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Motorsport</h5></a></li><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://www.vg.no/tag/tennis\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Tennis</h5></a></li><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://www.vg.no/tag/vintersport\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Vintersport</h5></a></li><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://tv.vg.no/kategori/3/sport\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Direktesendinger</h5></a></li></ul></li><li class=\"_section_y9n8e_7\"><a class=\"_link_y9n8e_1\" href=\"https://www.vg.no/rampelys\"><h4 class=\"_name_y9n8e_68 font-weight-semi-bold title-large\">Rampelys</h4></a><button class=\"_button_6bkpv_2 button-label-large _toggle_y9n8e_63\" role=\"button\" type=\"button\"><svg aria-label=\"Chevron Down\" fill=\"none\" height=\"24px\" role=\"graphics-symbol\" style=\"flex-shrink:0;height:var(--icon-size, var(--space-l));width:auto\" viewbox=\"0 0 24 24\" width=\"24px\" xmlns=\"http://www.w3.org/2000/svg\"><path d=\"M19.9257 8.76641C20.0246 8.86527 20.0245 9.02589 19.9257 9.12481C17.4604 11.5901 14.9948 14.0553 12.5302 16.5213C12.2373 16.8143 11.7626 16.8142 11.4697 16.5213L4.07417 9.12579C3.97545 9.0269 3.97543 8.86626 4.07417 8.76739L5.50874 7.33379C5.60765 7.23488 5.76823 7.23488 5.86714 7.33379L11.8212 13.2879C11.92 13.3861 12.0799 13.3862 12.1787 13.2879L18.1337 7.33282C18.2327 7.23406 18.3933 7.23396 18.4921 7.33282L19.9257 8.76641Z\" fill=\"var(--icon-color, currentColor)\"></path></svg></button><ul class=\"_subsections_y9n8e_34\" hidden=\"\"><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://www.vg.no/tag/film\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Film</h5></a></li><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://www.vg.no/tag/bok\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Bok</h5></a></li><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://www.vg.no/tag/musikk\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Musikk</h5></a></li><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://www.tek.no/gaming\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Spill</h5></a></li><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://www.vg.no/tag/tv\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">TV</h5></a></li></ul></li><li class=\"_section_y9n8e_7\"><a class=\"_link_y9n8e_1\" href=\"https://www.vg.no/meninger\"><h4 class=\"_name_y9n8e_68 font-weight-semi-bold title-large\">Meninger</h4></a></li><li class=\"_section_y9n8e_7\"><a class=\"_link_y9n8e_1\" href=\"https://www.vg.no/forbruker\"><h4 class=\"_name_y9n8e_68 font-weight-semi-bold title-large\">Forbruker</h4></a><button class=\"_button_6bkpv_2 button-label-large _toggle_y9n8e_63\" role=\"button\" type=\"button\"><svg aria-label=\"Chevron Down\" fill=\"none\" height=\"24px\" role=\"graphics-symbol\" style=\"flex-shrink:0;height:var(--icon-size, var(--space-l));width:auto\" viewbox=\"0 0 24 24\" width=\"24px\" xmlns=\"http://www.w3.org/2000/svg\"><path d=\"M19.9257 8.76641C20.0246 8.86527 20.0245 9.02589 19.9257 9.12481C17.4604 11.5901 14.9948 14.0553 12.5302 16.5213C12.2373 16.8143 11.7626 16.8142 11.4697 16.5213L4.07417 9.12579C3.97545 9.0269 3.97543 8.86626 4.07417 8.76739L5.50874 7.33379C5.60765 7.23488 5.76823 7.23488 5.86714 7.33379L11.8212 13.2879C11.92 13.3861 12.0799 13.3862 12.1787 13.2879L18.1337 7.33282C18.2327 7.23406 18.3933 7.23396 18.4921 7.33282L19.9257 8.76641Z\" fill=\"var(--icon-color, currentColor)\"></path></svg></button><ul class=\"_subsections_y9n8e_34\" hidden=\"\"><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://www.vg.no/tag/bil\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Bil</h5></a></li><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://www.vg.no/helse\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Helse</h5></a></li><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://www.vg.no/tag/livsstil\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Livsstil</h5></a></li><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://www.vg.no/tag/mat-og-drikke\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Mat og drikke</h5></a></li><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://www.vg.no/tag/vintips\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Vin</h5></a></li><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://www.vg.no/vin\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Vinguiden</h5></a></li><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://www.vg.no/tag/reise\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Reise</h5></a></li><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://www.vg.no/tag/teknologi\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Teknologi</h5></a></li></ul></li><li class=\"_section_y9n8e_7\"><a class=\"_link_y9n8e_1\" href=\"https://www.vg.no/pluss\"><h4 class=\"_name_y9n8e_68 font-weight-semi-bold title-large\">VG+</h4></a></li><li class=\"_section_y9n8e_7\"><a class=\"_link_y9n8e_1\" href=\"https://tv.vg.no\"><h4 class=\"_name_y9n8e_68 font-weight-semi-bold title-large\">VGTV</h4></a><button class=\"_button_6bkpv_2 button-label-large _toggle_y9n8e_63\" role=\"button\" type=\"button\"><svg aria-label=\"Chevron Down\" fill=\"none\" height=\"24px\" role=\"graphics-symbol\" style=\"flex-shrink:0;height:var(--icon-size, var(--space-l));width:auto\" viewbox=\"0 0 24 24\" width=\"24px\" xmlns=\"http://www.w3.org/2000/svg\"><path d=\"M19.9257 8.76641C20.0246 8.86527 20.0245 9.02589 19.9257 9.12481C17.4604 11.5901 14.9948 14.0553 12.5302 16.5213C12.2373 16.8143 11.7626 16.8142 11.4697 16.5213L4.07417 9.12579C3.97545 9.0269 3.97543 8.86626 4.07417 8.76739L5.50874 7.33379C5.60765 7.23488 5.76823 7.23488 5.86714 7.33379L11.8212 13.2879C11.92 13.3861 12.0799 13.3862 12.1787 13.2879L18.1337 7.33282C18.2327 7.23406 18.3933 7.23396 18.4921 7.33282L19.9257 8.76641Z\" fill=\"var(--icon-color, currentColor)\"></path></svg></button><ul class=\"_subsections_y9n8e_34\" hidden=\"\"><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://tv.vg.no/kategori/100324/underholdning\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Underholdning</h5></a></li><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://tv.vg.no/kategori/121/dokumentar\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Dokumentar</h5></a></li><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://tv.vg.no/live-sport\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Live sport</h5></a></li></ul></li></ul></section><div class=\"_footer_2fpqs_1\"><nav class=\"_section_2fpqs_19\"><h3 class=\"_title_2fpqs_31 title-large\">Annet innhold</h3><ul class=\"_subsection_2fpqs_25\"><li><a href=\"https://www.vg.no/podkast\"><h2 class=\"_link_2fpqs_8 label-medium\">Podkast</h2></a></li><li><a href=\"https://www.vg.no/spill/ordstjernen\"><h2 class=\"_link_2fpqs_8 label-medium\">Ordstjernen</h2></a></li><li><a href=\"https://e24.no\"><h2 class=\"_link_2fpqs_8 label-medium\">E24</h2></a></li><li><a href=\"https://www.minmote.no\"><h2 class=\"_link_2fpqs_8 label-medium\">MinMote</h2></a></li><li><a href=\"https://www.godt.no\"><h2 class=\"_link_2fpqs_8 label-medium\">Godt</h2></a></li><li><a href=\"https://pent.no\"><h2 class=\"_link_2fpqs_8 label-medium\">Pent</h2></a></li><li><a href=\"https://www.tek.no\"><h2 class=\"_link_2fpqs_8 label-medium\">Tek.no</h2></a></li><li><a href=\"https://www.vg.no/dinepenger\"><h2 class=\"_link_2fpqs_8 label-medium\">Dine Penger</h2></a></li><li><a href=\"https://www.vg.no/spesial/2025/pollen/\"><h2 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label-medium\">Bunadssko.no</h2></a></li></ul></nav><nav class=\"_section_2fpqs_19\"><h3 class=\"_title_2fpqs_31 title-large\">Info og kontakt</h3><ul class=\"_subsection_2fpqs_25\"><li><a href=\"https://www.vg.no/tips-oss\"><h2 class=\"_link_2fpqs_8 label-medium\">Tips oss</h2></a></li><li><a href=\"https://www.vg.no/informasjon/kontakt-oss\"><h2 class=\"_link_2fpqs_8 label-medium\">Kontakt VG</h2></a></li><li><a href=\"https://www.vg.no/informasjon\"><h2 class=\"_link_2fpqs_8 label-medium\">Informasjon</h2></a></li></ul></nav></div></div></nav></header><!--astro:end--></astro-island>  <push-banner data-allowed-subscriptions=\"11\" data-color-scheme=\"dark\" data-enable-fetch=\"true\" data-eventhub-token=\"eyJhbGciOiJIUzI1NiIsInR5cCI6IkpXVCJ9.eyJyZWFkIjpbInZnL3dlYi1wdXNoL3Byb2R1Y3Rpb24vIyJdfQ.-f-lLmTnCb1y-57cGnTbBEki9lEkvJ_6O4Qhn_DF-ik\" data-hide-after=\"8\" data-max-age-minutes=\"2\"></push-banner>  <div class=\"schibsted-data-controller\" data-nosnippet></div> <section id=\"hovedinnhold\" tabindex=\"-1\"></section>   <main class=\"article-main\" data-astro-cid-jwirc66j data-horseshoe=\"true\" data-topbanner=\"false\" data-topboard=\"true\" id=\"application\"> <div class=\"advertory-vg-skyscraperleft_1-wrapper__article\"><div class=\"advertory-vg-skyscraperleft_1__article\" id=\"skyscraperleft_1\"></div></div><div class=\"advertory-vg-topboard-wrapper__article\"><div class=\"advertory-vg-topboard__article\" id=\"topboard\"></div></div><div data-placement-format=\"sponsorstripe\"><div id=\"sponsorstripe\"></div></div>  <article class=\"article default\" data-astro-cid-jwirc66j> <header class=\"article-intro\" style=\"display: contents\"> <h1 class=\"_title_kfomj_1 _wide_kfomj_54 _small_kfomj_32 title-serif-m layout-component layout-wide layout-padded\" first-child=\"false\"><span class=\"_text_kfomj_58\">Får ikke prøve banebrytende medisin: –⁠ Systemet er umenneskelig</span></h1><p class=\"_lead_o9xde_2 _lead_xtcu6_50 layout-component text-serif-m layout-normal text-serif-l layout-component layout-wide layout-padded _wide_17hqh_1 layout-padded\">Ny forskning gir ALS-pasienter håp. Men alvorlig syke Kirsten og Kjartan får nei til å prøve. </p><astro-island await-children client=\"visible\" component-export=\"Image\" component-url=\"https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/Image.r_XTj6LO.js\" opts=\"{&quot;name&quot;:&quot;Image&quot;,&quot;value&quot;:true}\" prefix=\"r123\" props=\"{&quot;alt&quot;:[0],&quot;caption&quot;:[0,&quot; Foto: Line Møller / 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https://akamai.vgc.no/v2/images/7db5dd3a-a54c-4b98-83ad-a82730f1e3b2?format=auto&amp;w=1440&amp;s=204de3f83c828fc10334f54b9c5a11764937d674 1440w, https://akamai.vgc.no/v2/images/7db5dd3a-a54c-4b98-83ad-a82730f1e3b2?format=auto&amp;w=2160&amp;s=c5f95a82b4dd7801a35b068c1e75bd11f6968690 2160w\" style=\"object-position:56.17126937984496% 44.46765988372093%\" width=\"8256\"><figcaption class=\"text-sans-s _caption_qp4xg_10 layout-component layout-padded\"> Foto: Line Møller / VG</figcaption></figure><!--astro:end--></astro-island><section class=\"text-sans-s _byline_ntbth_1 layout-component layout-normal layout-padded\" data-expanded-class=\"_expanded_ntbth_56\" data-test-id=\"byline\" id=\"vg-byline-container\"><div class=\"_imageWrapper_ntbth_107\"><ul aria-hidden=\"true\" class=\"_images_ntbth_112\"><li><a class=\"_link_ntbth_117\" href=\"/forfatter/anne-stine-saether\" style=\"z-index:2\" title=\"Anne Stine Sæther\"><figure class=\"_figure_ntbth_66\"><img alt=\"Bilde av Anne Stine Sæther\" class=\"_image_ntbth_93\" decoding=\"async\" fetchpriority=\"low\" itemprop=\"image\" loading=\"lazy\" sizes=\"80px\" src=\"https://akamai.vgc.no/v2/images/a12ab6a4-7bca-4b06-b64c-34e74613856a?format=auto&amp;w=40&amp;s=f8d16e7ef3ec0ec9f931b2dbe1a23be483d89640\" srcset=\"https://akamai.vgc.no/v2/images/a12ab6a4-7bca-4b06-b64c-34e74613856a?format=auto&amp;w=40&amp;s=f8d16e7ef3ec0ec9f931b2dbe1a23be483d89640 40w, https://akamai.vgc.no/v2/images/a12ab6a4-7bca-4b06-b64c-34e74613856a?format=auto&amp;w=80&amp;s=9d22a83ef703344a3353fd5bd874293f139f299c 80w, https://akamai.vgc.no/v2/images/a12ab6a4-7bca-4b06-b64c-34e74613856a?format=auto&amp;w=100&amp;s=da952304cc3aa42690231028f31a6ef99710a727 100w, https://akamai.vgc.no/v2/images/a12ab6a4-7bca-4b06-b64c-34e74613856a?format=auto&amp;w=200&amp;s=514eb8fec7f08af53d42342265f3dc9b864975cb 200w, https://akamai.vgc.no/v2/images/a12ab6a4-7bca-4b06-b64c-34e74613856a?format=auto&amp;w=240&amp;s=69d03ae02564ca9eedce46080e7a6c56a971d802 240w, https://akamai.vgc.no/v2/images/a12ab6a4-7bca-4b06-b64c-34e74613856a?format=auto&amp;w=480&amp;s=9620feb0d996498e5e88c0e02c5d394c4e700f7d 480w\" width=\"480\"></figure></a></li><li><a class=\"_link_ntbth_117\" href=\"/forfatter/line-moeller-foto-2\" style=\"z-index:1\" title=\"Line Møller (foto)\"><figure class=\"_figure_ntbth_66\"><img alt=\"Bilde av Line Møller (foto)\" class=\"_image_ntbth_93\" decoding=\"async\" fetchpriority=\"low\" itemprop=\"image\" loading=\"lazy\" sizes=\"80px\" src=\"https://akamai.vgc.no/v2/images/86bd1337-52af-4a28-b881-46e1ce6a48f1?format=auto&amp;w=40&amp;s=bbf6a861fe698c4e5fe5452d7312ec9bdd9c0aee\" srcset=\"https://akamai.vgc.no/v2/images/86bd1337-52af-4a28-b881-46e1ce6a48f1?format=auto&amp;w=40&amp;s=bbf6a861fe698c4e5fe5452d7312ec9bdd9c0aee 40w, https://akamai.vgc.no/v2/images/86bd1337-52af-4a28-b881-46e1ce6a48f1?format=auto&amp;w=80&amp;s=ddac0b5eda04546d526ee137f49f5d80ec0c063f 80w, https://akamai.vgc.no/v2/images/86bd1337-52af-4a28-b881-46e1ce6a48f1?format=auto&amp;w=100&amp;s=faa3ad28612f7197682572cdf6e332e5b5ac7a09 100w, https://akamai.vgc.no/v2/images/86bd1337-52af-4a28-b881-46e1ce6a48f1?format=auto&amp;w=200&amp;s=a57edc31127f9fa120a6eeb0dd4019a41eebb54a 200w, https://akamai.vgc.no/v2/images/86bd1337-52af-4a28-b881-46e1ce6a48f1?format=auto&amp;w=240&amp;s=a045f674d3b2a3af2f2d0fb21b157b094410b3e0 240w, https://akamai.vgc.no/v2/images/86bd1337-52af-4a28-b881-46e1ce6a48f1?format=auto&amp;w=480&amp;s=712bdbcba5eec2b1bff0215d1d52004f67a759b7 480w\" width=\"480\"></figure></a></li></ul><button class=\"vg-byline-toggle _showMoreImage_ntbth_45 _hideShowMoreImage_ntbth_123\"><svg aria-label=\"Plus\" fill=\"none\" height=\"24px\" role=\"graphics-symbol\" style=\"flex-shrink:0;height:var(--icon-size, var(--space-l));width:auto\" viewbox=\"0 0 24 24\" width=\"24px\" xmlns=\"http://www.w3.org/2000/svg\"><path d=\"M8.53978 9.4287C9.03072 9.4287 9.4287 9.03072 9.4287 8.53978V2.88892C9.4287 2.39799 9.82669 2 10.3176 2H13.6824C14.1733 2 14.5713 2.39798 14.5713 2.88892V8.53978C14.5713 9.03072 14.9693 9.4287 15.4602 9.4287H21.1111C21.602 9.4287 22 9.82669 22 10.3176V13.6824C22 14.1733 21.602 14.5713 21.1111 14.5713H15.4602C14.9693 14.5713 14.5713 14.9693 14.5713 15.4602V21.1111C14.5713 21.602 14.1733 22 13.6824 22H10.3176C9.82669 22 9.4287 21.602 9.4287 21.1111V15.4602C9.4287 14.9693 9.03072 14.5713 8.53978 14.5713H2.88893C2.39799 14.5713 2 14.1733 2 13.6824L2 10.3176C2 9.82669 2.39798 9.4287 2.88892 9.4287H8.53978Z\" fill=\"var(--icon-color, currentColor)\"></path></svg></button></div><ul class=\"_names_ntbth_163\" data-expanded-class=\"_expanded_ntbth_56\" id=\"vg-byline\"><li class=\"text-sans-s _name_ntbth_131\"><a class=\"_link_ntbth_117\" href=\"/forfatter/anne-stine-saether\">Anne Stine Sæther</a></li><li class=\"text-sans-s _name_ntbth_131\"><a class=\"_link_ntbth_117\" href=\"/forfatter/line-moeller-foto-2\">Line Møller (foto)</a></li></ul><span class=\"text-sans-s _dateline_ntbth_31\">Rapporterer fra Oslo</span></section> <friendly-timestamp data-options=\"{&quot;showUpdated&quot;:true}\" style=\"display:contents\"><time class=\"text-sans-s _timestamp_ktvrt_1 _friendly_ktvrt_17 layout-component layout-normal layout-padded\" datetime=\"2026-01-25T10:15:56.000Z\"><span data-nosnippet=\"true\">Oppdatert søndag 25. januar kl. 11:15</span></time></friendly-timestamp> <div class=\"advertory-vg-netboard-wrapper__article\"><div class=\"advertory-vg-netboard__article\" id=\"netboard_1\"></div></div> </header>  <section class=\"article-body\" itemprop=\"articleBody\" style=\"display: contents\"> <div class=\"layout-component layout-padded layout-normal _tts_1njly_1\" data-track-id=\"tts:35336\" data-track-impression data-track-name=\"Får ikke prøve banebrytende medisin: – Systemet er umenneskelig\" data-track-target-newsroom=\"vgtts\"><astro-island await-children client=\"load\" component-export=\"TTSPlayer\" component-url=\"https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/video.ayTqLdUa.js\" opts=\"{&quot;name&quot;:&quot;TTSPlayer&quot;,&quot;value&quot;:true}\" prefix=\"r216\" props=\"{&quot;assetId&quot;:[0,35336],&quot;vendor&quot;:[0,&quot;vgtts&quot;],&quot;isApp&quot;:[0,false]}\" renderer-url=\"https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/client.B4ukvwq6.js\" ssr uid=\"1JodWp\"><div class=\"_svpContainer_1nwbk_1\"><div id=\"svp-video-35336-«r216R0»\"></div></div><div class=\"_perspective_1nwbk_11\"><div class=\"_controls_1nwbk_16\"><div class=\"_initial_1nwbk_33\"><button aria-disabled=\"true\" aria-label=\"Laster inn lytt til saken avspiller\" class=\"_button_6bkpv_2 button-label-large _filled_6bkpv_106 _play_10x2h_9 _button_10x2h_1\" data-track-click-intent=\"Attempt\" data-track-element-type=\"Play Button Disabled\" role=\"button\" type=\"button\"><svg aria-label=\"Play\" fill=\"none\" height=\"24px\" role=\"graphics-symbol\" style=\"flex-shrink:0;height:var(--icon-size, var(--space-l));width:auto\" viewbox=\"0 0 24 24\" width=\"24px\" xmlns=\"http://www.w3.org/2000/svg\"><path d=\"M10.4232 2.32693L18.614 11.3269C18.9613 11.7085 18.9613 12.2915 18.614 12.6731L10.4232 21.6731C10.2337 21.8813 9.9652 22 9.68364 22H7.12555C6.57325 22 6.12552 21.5523 6.12552 21L6.12552 3.00003C6.12552 2.44773 6.57325 2 7.12555 2L9.68364 2C9.9652 2 10.2337 2.1187 10.4232 2.32693Z\" fill=\"var(--icon-color, currentColor)\"></path></svg></button><p aria-hidden=\"true\" class=\"_introduction_17m6h_13\">Lytt til saken</p><p class=\"_srOnly_17m6h_1\"></p></div></div></div><!--astro:end--></astro-island></div> <astro-island await-children client=\"idle\" component-export=\"ArticleSummary\" component-url=\"https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/ArticleSummary.DJkigjDt.js\" opts=\"{&quot;name&quot;:&quot;ArticleSummary&quot;,&quot;value&quot;:true}\" prefix=\"r21\" props=\"{&quot;articleSummary&quot;:[1,[[0,{&quot;items&quot;:[1,[[0,{&quot;value&quot;:[0,&quot;En lovende ny medisin for ALS testes i Norge, men alvorlig syke Kirsten og Kjartan får ikke delta.&quot;],&quot;markup&quot;:[1,[]]}],[0,{&quot;value&quot;:[0,&quot;Medisinen ILB viser lovende resultater i Sverige og England, men er ikke godkjent for bruk utenfor studieoppsettet.&quot;],&quot;markup&quot;:[1,[]]}],[0,{&quot;value&quot;:[0,&quot;Familien til pasientene uttrykker frustrasjon over avslagene, som de mener tar fra dem et siste håp.&quot;],&quot;markup&quot;:[1,[]]}]]],&quot;blockType&quot;:[0,&quot;list:unordered&quot;]}]]],&quot;type&quot;:[0,&quot;news&quot;],&quot;introType&quot;:[0]}\" renderer-url=\"https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/client.B4ukvwq6.js\" ssr uid=\"ZhTKpj\"><div class=\"_summary_64s2r_1 layout-component layout-normal layout-padded\" data-theme=\"accent\"><track-element data-track-element-type=\"Article Summary\" data-track-id=\"article-summary\" data-track-impression=\"\" data-track-name=\"Article Summary\"><section aria-expanded=\"false\" aria-label=\"Utvid\" class=\"_box_1mfx9_1 font-vg-sans layout-component layout-normal _box_64s2r_31\" id=\"«r21R0»\" role=\"region\" style=\"max-height:var(--height)\"><div class=\"_titleContainer_64s2r_44\"><h2 class=\"title-serif-s _title_64s2r_44\">Kortversjonen</h2><button aria-label=\"Vis informasjon\" class=\"_button_6bkpv_2 button-label-large _button_64s2r_20\" data-track-id=\"article-summary-disclaimer\" data-track-name=\"Article Summary Disclaimer\" role=\"button\" type=\"button\"><svg aria-label=\"Ai\" fill=\"none\" height=\"24px\" role=\"graphics-symbol\" style=\"flex-shrink:0;height:var(--icon-size, var(--space-l));width:auto\" viewbox=\"0 0 24 24\" width=\"24px\" xmlns=\"http://www.w3.org/2000/svg\"><path d=\"M12.4244 11.4646L17.3 13.2687V15.3201L12.4244 17.1242L10.6202 22H8.56907L6.76485 17.1242L2 15.361V13.2278L6.76485 11.4646L8.52796 6.69995H10.6613L12.4244 11.4646Z\" fill=\"var(--icon-color, currentColor)\"></path><path d=\"M19.6103 4.33579L22 5.22004V6.22577L19.6103 7.11012L18.7259 9.50008H17.7203L16.8359 7.11012L14.5 6.24569V5.20012L16.8359 4.33579L17.7003 2.00003H18.7459L19.6103 4.33579Z\" fill=\"var(--icon-color, currentColor)\"></path></svg></button></div><div class=\"_disclaimer_64s2r_50\" hidden=\"\"><span class=\"_text_64s2r_64\" data-nosnippet=\"true\">Oppsummeringen er laget med kunstig intelligens og<!-- --> <a href=\"https://www.vg.no/informasjon/redaksjonelle-avgjorelser/183\">kvalitetssikret av VGs journalister.</a></span></div><ul class=\"_list_o9xde_3 _list_64s2r_85 _unordered_o9xde_106 text-sans-m\"><li class=\"_item_o9xde_30\">En lovende ny medisin for ALS testes i Norge, men alvorlig syke Kirsten og Kjartan får ikke delta.</li><li class=\"_item_o9xde_30\">Medisinen ILB viser lovende resultater i Sverige og England, men er ikke godkjent for bruk utenfor studieoppsettet.</li><li class=\"_item_o9xde_30\">Familien til pasientene uttrykker frustrasjon over avslagene, som de mener tar fra dem et siste håp.</li></ul><button aria-controls=\"«r21R0»\" class=\"_button_6bkpv_2 button-label-large _hug_6bkpv_81 _filled_6bkpv_106 _button_1mfx9_76\" role=\"button\" type=\"button\"><span>Vis <!-- -->mer</span></button></section></track-element></div><!--astro:end--></astro-island> <p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">Den nye medisinen som nå skal testes ut på ALS-syke i Norge er resultatet av et samarbeid mellom Universitetssykehuset i Göteborg og Queen Elizabeth Hospital i Birmingham i England. </p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\"><strong class=\"_strong_o9xde_25\">Den lovende medisinen har fått navnet ILB.</strong></p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">– For meg er det ingen risiko ved å prøve disse medisinene. Jeg skal uansett dø, sier Kirsten Jacobsen (62). </p><astro-island await-children client=\"visible\" component-export=\"Image\" component-url=\"https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/Image.r_XTj6LO.js\" opts=\"{&quot;name&quot;:&quot;Image&quot;,&quot;value&quot;:true}\" prefix=\"r131\" props=\"{&quot;alt&quot;:[0],&quot;caption&quot;:[0,&quot;Foto: Line Møller / VG&quot;],&quot;device&quot;:[0],&quot;editorialJudgment&quot;:[0],&quot;imageAsset&quot;:[0,{&quot;id&quot;:[0,&quot;459ec6fa-5b67-461e-a6e5-38d1a49bd427&quot;],&quot;size&quot;:[0,{&quot;width&quot;:[0,5379],&quot;height&quot;:[0,4034]}],&quot;urls&quot;:[1,[[0,{&quot;height&quot;:[0,30],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=40&amp;s=6bd5910081f204a54d43b6c62773beacc8853bf8&quot;],&quot;width&quot;:[0,40]}],[0,{&quot;height&quot;:[0,60],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=80&amp;s=729ed332ee0bb060f1fe37b6dd31595fa27acc08&quot;],&quot;width&quot;:[0,80]}],[0,{&quot;height&quot;:[0,75],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=100&amp;s=3ff7b70012dfcda2608eb83100f2bbe586269e70&quot;],&quot;width&quot;:[0,100]}],[0,{&quot;height&quot;:[0,150],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=200&amp;s=0bf255d9fce94e47d2f2f68106f99add2b62667d&quot;],&quot;width&quot;:[0,200]}],[0,{&quot;height&quot;:[0,180],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=240&amp;s=27a6954c2c7c304cf5ecb9a60ef81c6be7bc3cfb&quot;],&quot;width&quot;:[0,240]}],[0,{&quot;height&quot;:[0,360],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=480&amp;s=f7faeb5a071bd7f215b3ce7e94f5536b15618af0&quot;],&quot;width&quot;:[0,480]}],[0,{&quot;height&quot;:[0,435],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=580&amp;s=668f067b66bc64c1dc42ab78b651f6c66f3cd470&quot;],&quot;width&quot;:[0,580]}],[0,{&quot;height&quot;:[0,540],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=720&amp;s=90bbefa4a74dbbcf2a86d2d2d5a04a8aa203a3b2&quot;],&quot;width&quot;:[0,720]}],[0,{&quot;height&quot;:[0,810],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=1080&amp;s=6e51e25ddd8e5b761ba9b938d939f4b90c974454&quot;],&quot;width&quot;:[0,1080]}],[0,{&quot;height&quot;:[0,1080],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=1440&amp;s=ab5de627680ff5190c19e7f2217e7cc868e1dd73&quot;],&quot;width&quot;:[0,1440]}],[0,{&quot;height&quot;:[0,1620],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=2160&amp;s=52be0d9919843bca11ded7e78f48ffdc56898cbc&quot;],&quot;width&quot;:[0,2160]}]]]}],&quot;layout&quot;:[0],&quot;marginBottom&quot;:[0],&quot;padded&quot;:[0],&quot;type&quot;:[0,&quot;news&quot;]}\" renderer-url=\"https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/client.B4ukvwq6.js\" ssr uid=\"1itm9w\"><figure class=\"_figure_qp4xg_1 layout-component layout-normal\"><img alt=\"Foto: Line Møller / VG\" class=\"_image_qp4xg_65 layout-component layout-normal\" data-fullscreen-sizes=\"(min-width: 1000px) 2000px, 2000vw\" data-track-element-type=\"Article image fullscreen\" data-track-name=\"ImageFullscreen\" decoding=\"async\" height=\"4034\" itemprop=\"image\" loading=\"lazy\" sizes=\"(min-width: 980px) 980px, 100vw\" src=\"https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=40&amp;s=6bd5910081f204a54d43b6c62773beacc8853bf8\" srcset=\"https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=40&amp;s=6bd5910081f204a54d43b6c62773beacc8853bf8 40w, https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=80&amp;s=729ed332ee0bb060f1fe37b6dd31595fa27acc08 80w, https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=100&amp;s=3ff7b70012dfcda2608eb83100f2bbe586269e70 100w, https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=200&amp;s=0bf255d9fce94e47d2f2f68106f99add2b62667d 200w, https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=240&amp;s=27a6954c2c7c304cf5ecb9a60ef81c6be7bc3cfb 240w, https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=480&amp;s=f7faeb5a071bd7f215b3ce7e94f5536b15618af0 480w, https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=580&amp;s=668f067b66bc64c1dc42ab78b651f6c66f3cd470 580w, https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=720&amp;s=90bbefa4a74dbbcf2a86d2d2d5a04a8aa203a3b2 720w, https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=1080&amp;s=6e51e25ddd8e5b761ba9b938d939f4b90c974454 1080w, https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=1440&amp;s=ab5de627680ff5190c19e7f2217e7cc868e1dd73 1440w, https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=2160&amp;s=52be0d9919843bca11ded7e78f48ffdc56898cbc 2160w\" style=\"object-position:0% 0%\" width=\"5379\"><figcaption class=\"text-sans-s _caption_qp4xg_10 layout-component layout-padded\">Foto: Line Møller / VG</figcaption></figure><!--astro:end--></astro-island><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\"><strong class=\"_strong_o9xde_25\">VG har snakket med to ALS-syke - Kirsten (62) og 52-år gamle Kjartan Børdal Hovgaard. Ingen av dem har fått lov å delta i prosjektet, som ledes av Oslo Universitetssykehus (OUS). </strong></p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">Begge har også søkt om tilgang til medisinen utenom studien og fått avslag, selv om de selv foreslår at de kan betale for behandlingen.</p><div class=\"advertory-vg-netboard-wrapper__article\"><div class=\"advertory-vg-netboard__article\" id=\"netboard_2\"></div></div><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">Det er ca 400 ALS-pasienter i Norge. I studien er det plass til 116 deltakere. </p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">– De som ikke får være med, overlates til ingen behandling og en sikker død. Jeg mener det er uetisk. De burde fått medisinen via <abbr class=\"_explanation_o9xde_140\" tabindex=\"0\" title=\" En tillatelse som kan gis for å bruke en medisin som ikke er godkjent i landet, ofte i tilfeller der det ikke finnes andre behandlingsalternativer.\">godkjenningsfritak<span aria-hidden=\"true\" class=\"text-sans-s _title_o9xde_151\" role=\"presentation\"><span class=\"text-serif-l _word_o9xde_156\">godkjenningsfritak</span> En tillatelse som kan gis for å bruke en medisin som ikke er godkjent i landet, ofte i tilfeller der det ikke finnes andre behandlingsalternativer.</span></abbr>, eller i en egen «forskningsarm.» Er dette forsvarlig, spør Hektor Hovgaard, Kjartans bror.</p><astro-island await-children client=\"visible\" component-export=\"Image\" component-url=\"https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/Image.r_XTj6LO.js\" opts=\"{&quot;name&quot;:&quot;Image&quot;,&quot;value&quot;:true}\" prefix=\"r137\" props=\"{&quot;alt&quot;:[0],&quot;caption&quot;:[0,&quot;Kjartan Børdal Hovgaard (52).  Foto: Privat&quot;],&quot;device&quot;:[0],&quot;editorialJudgment&quot;:[0],&quot;imageAsset&quot;:[0,{&quot;id&quot;:[0,&quot;2aaf6cf8-7da5-44b4-a444-85d8140f8ea3&quot;],&quot;size&quot;:[0,{&quot;width&quot;:[0,2204],&quot;height&quot;:[0,1654]}],&quot;urls&quot;:[1,[[0,{&quot;height&quot;:[0,30],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=40&amp;s=c505a7a8bb108b13168af5ebf699ced3598b78bb&quot;],&quot;width&quot;:[0,40]}],[0,{&quot;height&quot;:[0,60],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=80&amp;s=dcbf6113039f147fc5a83cf9ae582c8a3e327152&quot;],&quot;width&quot;:[0,80]}],[0,{&quot;height&quot;:[0,75],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=100&amp;s=2c8bcbf7c89f0d7742e57ff08212adb170226f59&quot;],&quot;width&quot;:[0,100]}],[0,{&quot;height&quot;:[0,150],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=200&amp;s=bc3282d6f76d3fc1148a36961c7c02551ddcc1d3&quot;],&quot;width&quot;:[0,200]}],[0,{&quot;height&quot;:[0,180],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=240&amp;s=f9812d3f162be4003e24d8bc7dcffe20cd3a237d&quot;],&quot;width&quot;:[0,240]}],[0,{&quot;height&quot;:[0,360],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=480&amp;s=f10b17b5aca1854797e270c41582324a4ae16829&quot;],&quot;width&quot;:[0,480]}],[0,{&quot;height&quot;:[0,435],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=580&amp;s=c1f711210f5386815095e8c454b4996bd8f2bda1&quot;],&quot;width&quot;:[0,580]}],[0,{&quot;height&quot;:[0,540],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=720&amp;s=5f2e3856955e5866e24e5a700e0b5e8196eba724&quot;],&quot;width&quot;:[0,720]}],[0,{&quot;height&quot;:[0,810],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=1080&amp;s=535d03c1ae0d54ccfad83c77d88b60eb784fd98a&quot;],&quot;width&quot;:[0,1080]}],[0,{&quot;height&quot;:[0,1081],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=1440&amp;s=965c40d041abb4b7656214f79c9703baed151466&quot;],&quot;width&quot;:[0,1440]}],[0,{&quot;height&quot;:[0,1621],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=2160&amp;s=312c3e3405bb07940ac0d59ae86bb9189d86f57e&quot;],&quot;width&quot;:[0,2160]}]]]}],&quot;layout&quot;:[0],&quot;marginBottom&quot;:[0],&quot;padded&quot;:[0],&quot;type&quot;:[0,&quot;news&quot;]}\" renderer-url=\"https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/client.B4ukvwq6.js\" ssr uid=\"1svLQA\"><figure class=\"_figure_qp4xg_1 layout-component layout-normal\"><img alt=\"Kjartan Børdal Hovgaard (52).  Foto: Privat\" class=\"_image_qp4xg_65 layout-component layout-normal\" data-fullscreen-sizes=\"(min-width: 1000px) 2000px, 2000vw\" data-track-element-type=\"Article image fullscreen\" data-track-name=\"ImageFullscreen\" decoding=\"async\" height=\"1654\" itemprop=\"image\" loading=\"lazy\" sizes=\"(min-width: 980px) 980px, 100vw\" src=\"https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=40&amp;s=c505a7a8bb108b13168af5ebf699ced3598b78bb\" srcset=\"https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=40&amp;s=c505a7a8bb108b13168af5ebf699ced3598b78bb 40w, https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=80&amp;s=dcbf6113039f147fc5a83cf9ae582c8a3e327152 80w, https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=100&amp;s=2c8bcbf7c89f0d7742e57ff08212adb170226f59 100w, https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=200&amp;s=bc3282d6f76d3fc1148a36961c7c02551ddcc1d3 200w, https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=240&amp;s=f9812d3f162be4003e24d8bc7dcffe20cd3a237d 240w, https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=480&amp;s=f10b17b5aca1854797e270c41582324a4ae16829 480w, https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=580&amp;s=c1f711210f5386815095e8c454b4996bd8f2bda1 580w, https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=720&amp;s=5f2e3856955e5866e24e5a700e0b5e8196eba724 720w, https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=1080&amp;s=535d03c1ae0d54ccfad83c77d88b60eb784fd98a 1080w, https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=1440&amp;s=965c40d041abb4b7656214f79c9703baed151466 1440w, https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=2160&amp;s=312c3e3405bb07940ac0d59ae86bb9189d86f57e 2160w\" style=\"object-position:0% 0%\" width=\"2204\"><figcaption class=\"text-sans-s _caption_qp4xg_10 layout-component layout-padded\">Kjartan Børdal Hovgaard (52).  Foto: Privat</figcaption></figure><!--astro:end--></astro-island><h2 class=\"_heading_o9xde_1 _heading_xtcu6_1 layout-component text-serif-m layout-normal text-serif-m layout-padded\"><strong class=\"_strong_o9xde_25\">Slik foregår studien: </strong></h2><ul class=\"_list_o9xde_3 _list_xtcu6_9 _unordered_o9xde_106 layout-component text-serif-m layout-normal text-serif-m layout-padded\"><li class=\"_item_o9xde_30\">Halvparten av de 116 deltagerne som er med i OUS-prosjektet får medisinen ILB, mens den andre halvdelen får Riluzol, en eksisterende medisin. </li><li class=\"_item_o9xde_30\">Riluzol beskrives som et legemiddel med svært begrenset effekt. Pasientene som deltar i studiet, vet ikke selv hva de får. </li><li class=\"_item_o9xde_30\">Prosjektet samarbeider med <abbr class=\"_explanation_o9xde_140\" tabindex=\"0\" title=\"Samarbeid med\nAkershus universitetssykehus\nHelse Bergen\nHelse Møre og Romsdal\nHelse Stavanger\nNordlandssykehuset\nSørlandet sykehus\nSt. Olavs hospital\nSykehuset i Vestfold\nSykehuset Innlandet\nSykehuset Telemark\nUniversitetssykehuset Nord-Norge\nVestre viken\">sykehus over hele landet<span aria-hidden=\"true\" class=\"text-sans-s _title_o9xde_151\" role=\"presentation\"><span class=\"text-serif-l _word_o9xde_156\">sykehus over hele landet</span>Samarbeid med\nAkershus universitetssykehus\nHelse Bergen\nHelse Møre og Romsdal\nHelse Stavanger\nNordlandssykehuset\nSørlandet sykehus\nSt. Olavs hospital\nSykehuset i Vestfold\nSykehuset Innlandet\nSykehuset Telemark\nUniversitetssykehuset Nord-Norge\nVestre viken</span></abbr>.</li></ul><h2 class=\"_heading_o9xde_1 _heading_xtcu6_1 layout-component text-serif-m layout-normal text-serif-m layout-padded\">– Oppfyller ikke kriteriene for å delta</h2><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">– Vi er veldig lei oss for pasienter vi må si nei til. En stor andel av ALS-pasientene oppfyller ikke kriteriene for å delta i studien. De er kommet for langt i sykdomsforløpet. For å delta må de ha funksjoner som kan måles, sier prosjektleder, overlege Angelina Hatlø Maniaol. </p><div class=\"advertory-vg-netboard-wrapper__article\"><div class=\"advertory-vg-netboard__article\" id=\"netboard_3\"></div></div><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">Hun er <abbr class=\"_explanation_o9xde_140\" tabindex=\"0\" title=\" En lege som er spesialist i sykdommer og lidelser i nervesystemet, inkludert hjernen, ryggmargen og nerver.\">nevrolog <span aria-hidden=\"true\" class=\"text-sans-s _title_o9xde_151\" role=\"presentation\"><span class=\"text-serif-l _word_o9xde_156\">nevrolog </span> En lege som er spesialist i sykdommer og lidelser i nervesystemet, inkludert hjernen, ryggmargen og nerver.</span></abbr>ved Oslo universitetssykehus.</p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">– Vi har et håp som alle andre. Det er å finne en ny behandling, en bremsemedisin som kan forlenge livet. Pasientene blir ikke kurert. Sannsynligheten for det er veldig liten. Det beste utfallet er at vi kan bevise at <abbr class=\"_explanation_o9xde_140\" tabindex=\"0\" title=\"den nye medisinen\">ILB<span aria-hidden=\"true\" class=\"text-sans-s _title_o9xde_151\" role=\"presentation\"><span class=\"text-serif-l _word_o9xde_156\">ILB</span>den nye medisinen</span></abbr> virker og at det kommer flere studier i etterkant av denne som tester nye produkter mot ALS.</p><section class=\"_portrait_ygndg_1 layout-component layout-normal layout-padded\" data-body=\"false\"><figure style=\"display:contents\"><picture class=\"_picture_ygndg_60\"><img alt=\"Bilde av Oslo universitetssykehus.\" class=\"_image_ygndg_42\" height=\"37\" itemprop=\"image\" loading=\"lazy\" sizes=\"480px\" src=\"https://akamai.vgc.no/v2/images/1e5ab4bb-9a85-42c3-acf4-6199c6a246c8?format=auto&amp;w=40&amp;s=bd647799164a501d1dddfb4308d2e9997e58748c\" srcset=\"https://akamai.vgc.no/v2/images/1e5ab4bb-9a85-42c3-acf4-6199c6a246c8?format=auto&amp;w=40&amp;s=bd647799164a501d1dddfb4308d2e9997e58748c 40w, https://akamai.vgc.no/v2/images/1e5ab4bb-9a85-42c3-acf4-6199c6a246c8?format=auto&amp;w=80&amp;s=117da01e2485714b559503f8815c4ea86fae1a3a 80w, https://akamai.vgc.no/v2/images/1e5ab4bb-9a85-42c3-acf4-6199c6a246c8?format=auto&amp;w=100&amp;s=2f4af12057a1ef1b61566368410b1ac7d2b9efe0 100w\" width=\"40\"></picture><figcaption class=\"_details_ygndg_24\"><strong class=\"_name_ygndg_51 title-serif-xs\">Oslo universitetssykehus.</strong><p class=\"_paragraph_o9xde_4 text-sans-m _description_ygndg_56\">Prosjektleder Angelina Hatlø Maniaol, nevrolog og overlege ved OUS</p></figcaption></figure></section><h2 class=\"_heading_o9xde_1 _heading_xtcu6_1 layout-component text-serif-m layout-normal text-serif-m layout-padded\"><strong class=\"_strong_o9xde_25\">– Hun står uten behandlingsalternativer</strong></h2><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">Overlege og spesialist i nevrologi, Abdullah Mohammud, søkte i oktober i fjor på vegne av Kirsten Jacobsen, om tilgang til den nye medisinen utenom OUS-studien, et såkalt godkjenningsfritak. </p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">Legen er tilknyttet Oslo universitetssykehus, Smerteklinikken og Colosseumklinikken. </p><div class=\"advertory-vg-netboard-wrapper__article\"><div class=\"advertory-vg-netboard__article\" id=\"netboard_4\"></div></div><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">– Formålet med søknaden er å sikre pasienten tilgang til en potensielt symptomlindrende og livsforlengende behandling, som kan bidra til å bremse sykdomsprogresjon og bevare funksjonsevnen, skrev han i søknaden. </p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\"><strong class=\"_strong_o9xde_25\">– Hun står uten behandlingsalternativer. Pasienten er kjent med og aksepterer at det for medisiner som er under utvikling, kan oppstå tidligere ukjente bivirkninger, også av alvorlig grad eller fatale.</strong></p><astro-island await-children client=\"visible\" component-export=\"Image\" component-url=\"https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/Image.r_XTj6LO.js\" opts=\"{&quot;name&quot;:&quot;Image&quot;,&quot;value&quot;:true}\" prefix=\"r152\" props=\"{&quot;alt&quot;:[0],&quot;caption&quot;:[0,&quot;Foto: Line Møller / VG&quot;],&quot;device&quot;:[0],&quot;editorialJudgment&quot;:[0],&quot;imageAsset&quot;:[0,{&quot;id&quot;:[0,&quot;7af797c0-34a8-46c2-b31a-0ccb8d17d7e8&quot;],&quot;size&quot;:[0,{&quot;width&quot;:[0,8256],&quot;height&quot;:[0,5504]}],&quot;urls&quot;:[1,[[0,{&quot;height&quot;:[0,27],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/7af797c0-34a8-46c2-b31a-0ccb8d17d7e8?format=auto&amp;w=40&amp;s=916fc115dbc9f52265295dd851e3fee30b6e40a7&quot;],&quot;width&quot;:[0,40]}],[0,{&quot;height&quot;:[0,53],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/7af797c0-34a8-46c2-b31a-0ccb8d17d7e8?format=auto&amp;w=80&amp;s=69b29b1052d777006a6ee35cdf3faede77066b99&quot;],&quot;width&quot;:[0,80]}],[0,{&quot;height&quot;:[0,67],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/7af797c0-34a8-46c2-b31a-0ccb8d17d7e8?format=auto&amp;w=100&amp;s=05b8e99cb27a9070333f4e04a7001c0b2b7d32b9&quot;],&quot;width&quot;:[0,100]}],[0,{&quot;height&quot;:[0,133],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/7af797c0-34a8-46c2-b31a-0ccb8d17d7e8?format=auto&amp;w=200&amp;s=376ce9c28a6904f4ea540745701a3a3334439766&quot;],&quot;width&quot;:[0,200]}],[0,{&quot;height&quot;:[0,160],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/7af797c0-34a8-46c2-b31a-0ccb8d17d7e8?format=auto&amp;w=240&amp;s=cfeac43834e718562052f0629ac0fefc35a697eb&quot;],&quot;width&quot;:[0,240]}],[0,{&quot;height&quot;:[0,320],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/7af797c0-34a8-46c2-b31a-0ccb8d17d7e8?format=auto&amp;w=480&amp;s=d5cef6bfc29927830ff3471d9a846a2f05c5b7f5&quot;],&quot;width&quot;:[0,480]}],[0,{&quot;height&quot;:[0,387],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/7af797c0-34a8-46c2-b31a-0ccb8d17d7e8?format=auto&amp;w=580&amp;s=77843d8a7a0ea0ed682e4c3b3ceeb970e3698fbd&quot;],&quot;width&quot;:[0,580]}],[0,{&quot;height&quot;:[0,480],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/7af797c0-34a8-46c2-b31a-0ccb8d17d7e8?format=auto&amp;w=720&amp;s=815291e2973f0084c16c3e4c2a43e109a029175c&quot;],&quot;width&quot;:[0,720]}],[0,{&quot;height&quot;:[0,720],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/7af797c0-34a8-46c2-b31a-0ccb8d17d7e8?format=auto&amp;w=1080&amp;s=7064b6ffb76f0adfa13f0de93dcf6163e5af9943&quot;],&quot;width&quot;:[0,1080]}],[0,{&quot;height&quot;:[0,960],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/7af797c0-34a8-46c2-b31a-0ccb8d17d7e8?format=auto&amp;w=1440&amp;s=71697e0247c287e1865585c19015eba4dc619d9c&quot;],&quot;width&quot;:[0,1440]}],[0,{&quot;height&quot;:[0,1440],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/7af797c0-34a8-46c2-b31a-0ccb8d17d7e8?format=auto&amp;w=2160&amp;s=28ae6c9569916efe58ca6b81b9bae0080c05adfa&quot;],&quot;width&quot;:[0,2160]}]]]}],&quot;layout&quot;:[0],&quot;marginBottom&quot;:[0],&quot;padded&quot;:[0],&quot;type&quot;:[0,&quot;news&quot;]}\" renderer-url=\"https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/client.B4ukvwq6.js\" ssr uid=\"2e5nrO\"><figure class=\"_figure_qp4xg_1 layout-component layout-normal\"><img alt=\"Foto: Line Møller / VG\" class=\"_image_qp4xg_65 layout-component layout-normal\" data-fullscreen-sizes=\"(min-width: 1000px) 2000px, 2000vw\" data-track-element-type=\"Article image fullscreen\" data-track-name=\"ImageFullscreen\" decoding=\"async\" height=\"5504\" itemprop=\"image\" loading=\"lazy\" sizes=\"(min-width: 980px) 980px, 100vw\" src=\"https://akamai.vgc.no/v2/images/7af797c0-34a8-46c2-b31a-0ccb8d17d7e8?format=auto&amp;w=40&amp;s=916fc115dbc9f52265295dd851e3fee30b6e40a7\" srcset=\"https://akamai.vgc.no/v2/images/7af797c0-34a8-46c2-b31a-0ccb8d17d7e8?format=auto&amp;w=40&amp;s=916fc115dbc9f52265295dd851e3fee30b6e40a7 40w, https://akamai.vgc.no/v2/images/7af797c0-34a8-46c2-b31a-0ccb8d17d7e8?format=auto&amp;w=80&amp;s=69b29b1052d777006a6ee35cdf3faede77066b99 80w, https://akamai.vgc.no/v2/images/7af797c0-34a8-46c2-b31a-0ccb8d17d7e8?format=auto&amp;w=100&amp;s=05b8e99cb27a9070333f4e04a7001c0b2b7d32b9 100w, https://akamai.vgc.no/v2/images/7af797c0-34a8-46c2-b31a-0ccb8d17d7e8?format=auto&amp;w=200&amp;s=376ce9c28a6904f4ea540745701a3a3334439766 200w, https://akamai.vgc.no/v2/images/7af797c0-34a8-46c2-b31a-0ccb8d17d7e8?format=auto&amp;w=240&amp;s=cfeac43834e718562052f0629ac0fefc35a697eb 240w, https://akamai.vgc.no/v2/images/7af797c0-34a8-46c2-b31a-0ccb8d17d7e8?format=auto&amp;w=480&amp;s=d5cef6bfc29927830ff3471d9a846a2f05c5b7f5 480w, https://akamai.vgc.no/v2/images/7af797c0-34a8-46c2-b31a-0ccb8d17d7e8?format=auto&amp;w=580&amp;s=77843d8a7a0ea0ed682e4c3b3ceeb970e3698fbd 580w, https://akamai.vgc.no/v2/images/7af797c0-34a8-46c2-b31a-0ccb8d17d7e8?format=auto&amp;w=720&amp;s=815291e2973f0084c16c3e4c2a43e109a029175c 720w, https://akamai.vgc.no/v2/images/7af797c0-34a8-46c2-b31a-0ccb8d17d7e8?format=auto&amp;w=1080&amp;s=7064b6ffb76f0adfa13f0de93dcf6163e5af9943 1080w, https://akamai.vgc.no/v2/images/7af797c0-34a8-46c2-b31a-0ccb8d17d7e8?format=auto&amp;w=1440&amp;s=71697e0247c287e1865585c19015eba4dc619d9c 1440w, https://akamai.vgc.no/v2/images/7af797c0-34a8-46c2-b31a-0ccb8d17d7e8?format=auto&amp;w=2160&amp;s=28ae6c9569916efe58ca6b81b9bae0080c05adfa 2160w\" style=\"object-position:0% 0%\" width=\"8256\"><figcaption class=\"text-sans-s _caption_qp4xg_10 layout-component layout-padded\">Foto: Line Møller / VG</figcaption></figure><!--astro:end--></astro-island><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">For Kirsten ville den nye medisinen gitt håp. Men hun fikk avslag. </p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">– Vi har mottatt tre søknader om godkjenningsfritak for ILB de siste månedene. To av sakene er fortsatt under behandling. Fordi sakene ligner på hverandre, ønsker vi ikke å uttale oss nå, sier pressevakten i Direktoratet for Medisinske Produkter til VG.</p><astro-island await-children client=\"visible\" component-export=\"PollWrapper\" component-url=\"https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/PollWrapper.CLpAz43c.js\" opts=\"{&quot;name&quot;:&quot;Component&quot;,&quot;value&quot;:{&quot;rootMargin&quot;:&quot;100%&quot;}}\" prefix=\"r230\" props=\"{&quot;answers&quot;:[1,[[0,{&quot;correct&quot;:[0,false],&quot;value&quot;:[0,&quot;Ja, uten tvil&quot;]}],[0,{&quot;correct&quot;:[0,false],&quot;value&quot;:[0,&quot;Kanskje&quot;]}],[0,{&quot;correct&quot;:[0,false],&quot;value&quot;:[0,&quot;Nei&quot;]}]]],&quot;fact&quot;:[0],&quot;id&quot;:[0,&quot;k0R0V9-b3455e2d62&quot;],&quot;image&quot;:[0],&quot;question&quot;:[0,&quot;Ville du tatt en uprøvd medisin hvis du var alvorlig syk?&quot;],&quot;subtype&quot;:[0,&quot;poll&quot;],&quot;type&quot;:[0,&quot;poll&quot;],&quot;richType&quot;:[0,&quot;poll-question&quot;],&quot;isDev&quot;:[0,false],&quot;statistics&quot;:[0,{&quot;questionId&quot;:[0,&quot;k0R0V9-b3455e2d62&quot;],&quot;answers&quot;:[0,{&quot;0&quot;:[0,&quot;6598&quot;],&quot;1&quot;:[0,&quot;573&quot;],&quot;2&quot;:[0,&quot;99&quot;]}],&quot;lastUpdated&quot;:[0,1769336169143]}]}\" renderer-url=\"https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/client.B4ukvwq6.js\" ssr uid=\"ZEUlBu\"><section class=\"font-vg-sans layout-component layout-normal layout-padded _poll_7u87d_1\" data-theme=\"accent\" data-track-element-type=\"Poll\" data-track-id=\"poll:k0R0V9-b3455e2d62\" data-track-impression=\"true\" data-track-name=\"Ville du tatt en uprøvd medisin hvis du var alvorlig syk?\" id=\"poll-k0R0V9-b3455e2d62\"><form class=\"_form_7u87d_40\" data-subtype=\"poll\"><fieldset class=\"_fieldset_7u87d_34\"><div class=\"_contents_7u87d_41\"><legend class=\"title-serif-s _legend_7u87d_112\"><span class=\"_quizIntro_7u87d_58\"></span><span>Ville du tatt en uprøvd medisin hvis du var alvorlig syk?</span></legend><input hidden=\"\" id=\"0-k0R0V9-b3455e2d62\" name=\"k0R0V9-b3455e2d62\" type=\"radio\" value=\"0\"><label class=\"_label_7u87d_17\" data-track-id=\"poll:k0R0V9-b3455e2d62:0\" data-track-name=\"Ja, uten tvil\" for=\"0-k0R0V9-b3455e2d62\" style=\"--percentage:0%\" tabindex=\"0\"><span class=\"_letter_7u87d_103\">a</span><span class=\"text-sans-m _value_7u87d_140\">Ja, uten tvil</span></label><input hidden=\"\" id=\"1-k0R0V9-b3455e2d62\" name=\"k0R0V9-b3455e2d62\" type=\"radio\" value=\"1\"><label class=\"_label_7u87d_17\" data-track-id=\"poll:k0R0V9-b3455e2d62:1\" data-track-name=\"Kanskje\" for=\"1-k0R0V9-b3455e2d62\" style=\"--percentage:0%\" tabindex=\"0\"><span class=\"_letter_7u87d_103\">b</span><span class=\"text-sans-m _value_7u87d_140\">Kanskje</span></label><input hidden=\"\" id=\"2-k0R0V9-b3455e2d62\" name=\"k0R0V9-b3455e2d62\" type=\"radio\" value=\"2\"><label class=\"_label_7u87d_17\" data-track-id=\"poll:k0R0V9-b3455e2d62:2\" data-track-name=\"Nei\" for=\"2-k0R0V9-b3455e2d62\" style=\"--percentage:0%\" tabindex=\"0\"><span class=\"_letter_7u87d_103\">c</span><span class=\"text-sans-m _value_7u87d_140\">Nei</span></label></div></fieldset></form></section><!--astro:end--></astro-island> <p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">Medisinen som nå skal testes ut i Norge, er tidligere testet i et svensk/britisk prosjekt. Her er det rapportert om funksjonsforbedring hos flere pasienter og ingen alvorlige bivirkninger av den nyutviklede medisinen. </p><div class=\"advertory-vg-netboard-wrapper__article\"><div class=\"advertory-vg-netboard__article\" id=\"netboard_5\"></div></div><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">Blant ALS-syke har erfaringene til <abbr class=\"_explanation_o9xde_140\" tabindex=\"0\" title=\"https://www.neurologiisverige.se/als-medicinen-ger-erik-framtidshopp/?utm_source=chatgpt.com\">svenske Erik<span aria-hidden=\"true\" class=\"text-sans-s _title_o9xde_151\" role=\"presentation\"><span class=\"text-serif-l _word_o9xde_156\">svenske Erik</span>https://www.neurologiisverige.se/als-medicinen-ger-erik-framtidshopp/?utm_source=chatgpt.com</span></abbr>, en pasient i 30-årene, tent et håp. </p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">Han har selv fortalt i svenske medier at han ble tydelig bedre etter å ha deltatt i prosjektet.  </p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">VG får opplyst at Erik er den eneste pasienten i studiet som fortsatt lever. </p><h2 class=\"_heading_o9xde_1 _heading_xtcu6_1 _heading_1rauo_1 layout-component text-serif-m layout-normal layout-padded\" id=\"Beinet sviktet\"> Beinet sviktet</h2><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">Kirsten Jacobsens første symptomer på alvorlig sykdom, var et bein som svikt et.</p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">– Etter hvert greide jeg ikke å gå lenger, sier hun.</p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">– Det utviklet seg gradvis. Det er det som er denne sykdommen. Den er grusom. Du har gradvise tap av muskulatur hver dag. Det er nådeløst og det går sakte, sier ektemannen Tallak Thorleifsson.</p><astro-island await-children client=\"visible\" component-export=\"Image\" component-url=\"https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/Image.r_XTj6LO.js\" opts=\"{&quot;name&quot;:&quot;Image&quot;,&quot;value&quot;:true}\" prefix=\"r164\" props=\"{&quot;alt&quot;:[0],&quot;caption&quot;:[0,&quot;Foto: Line Møller / 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renderer-url=\"https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/client.B4ukvwq6.js\" ssr uid=\"Z2afPsU\"><figure class=\"_figure_qp4xg_1 layout-component layout-normal\"><img alt=\"Foto: Line Møller / VG\" class=\"_image_qp4xg_65 layout-component layout-normal\" data-fullscreen-sizes=\"(min-width: 1000px) 2000px, 2000vw\" data-track-element-type=\"Article image fullscreen\" data-track-name=\"ImageFullscreen\" decoding=\"async\" height=\"5238\" itemprop=\"image\" loading=\"lazy\" sizes=\"(min-width: 980px) 980px, 100vw\" src=\"https://akamai.vgc.no/v2/images/e0d7776b-9279-42e3-8d53-7eb1b76453f2?format=auto&amp;w=40&amp;s=3bb7b6dbbd9a276a4f2ca5aad6aa77ac4509d756\" srcset=\"https://akamai.vgc.no/v2/images/e0d7776b-9279-42e3-8d53-7eb1b76453f2?format=auto&amp;w=40&amp;s=3bb7b6dbbd9a276a4f2ca5aad6aa77ac4509d756 40w, https://akamai.vgc.no/v2/images/e0d7776b-9279-42e3-8d53-7eb1b76453f2?format=auto&amp;w=80&amp;s=3510bcdc875356b81f349ffaaef89d47e4861635 80w, https://akamai.vgc.no/v2/images/e0d7776b-9279-42e3-8d53-7eb1b76453f2?format=auto&amp;w=100&amp;s=fb2e9a4cd38dd227ee34fe840597fcff9b81ca14 100w, https://akamai.vgc.no/v2/images/e0d7776b-9279-42e3-8d53-7eb1b76453f2?format=auto&amp;w=200&amp;s=5c79dec05b958d4c13c09bf4ee96efb575a1ed31 200w, https://akamai.vgc.no/v2/images/e0d7776b-9279-42e3-8d53-7eb1b76453f2?format=auto&amp;w=240&amp;s=a20cb23ec15b7a9fcd82a495bb1afa62c326fc93 240w, https://akamai.vgc.no/v2/images/e0d7776b-9279-42e3-8d53-7eb1b76453f2?format=auto&amp;w=480&amp;s=a7f82d7765d24c278e4bfe8c133ad6314ecca1ce 480w, https://akamai.vgc.no/v2/images/e0d7776b-9279-42e3-8d53-7eb1b76453f2?format=auto&amp;w=580&amp;s=987e70d894b5b0564357a4168858341aeb649913 580w, https://akamai.vgc.no/v2/images/e0d7776b-9279-42e3-8d53-7eb1b76453f2?format=auto&amp;w=720&amp;s=c97a37864d22d964ef10f0cc04ae121bb190bf72 720w, https://akamai.vgc.no/v2/images/e0d7776b-9279-42e3-8d53-7eb1b76453f2?format=auto&amp;w=1080&amp;s=5ce4dcba9636246b1562a31a81361b5ed41601f4 1080w, https://akamai.vgc.no/v2/images/e0d7776b-9279-42e3-8d53-7eb1b76453f2?format=auto&amp;w=1440&amp;s=bbe391f080b8688649f66037afecd13eb7b282ae 1440w, https://akamai.vgc.no/v2/images/e0d7776b-9279-42e3-8d53-7eb1b76453f2?format=auto&amp;w=2160&amp;s=7451bbbbf478258ae5afcbe7c5bb248fad8ecca6 2160w\" style=\"object-position:0% 0%\" width=\"3929\"><figcaption class=\"text-sans-s _caption_qp4xg_10 layout-component layout-padded\">Foto: Line Møller / VG</figcaption></figure><!--astro:end--></astro-island><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">Ved påsketider i 2023 kom diagnosen. </p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\"><strong class=\"_strong_o9xde_25\">Kirsten hadde ALS. </strong></p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">Nesten tre år senere sitter hun i rullestolen hjemme i Oslo. Pustehjelp er blitt en del av hverdagen. </p><h2 class=\"_heading_o9xde_1 _heading_xtcu6_1 _heading_1rauo_1 layout-component text-serif-m layout-normal layout-padded\" id=\"– Et siste håp\"> – Et siste håp</h2><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">ALS-diagnosen er tung for hele familien. Håpet var et positivt svar på søknaden om å få bruke ILB.</p><div class=\"advertory-vg-netboard-wrapper__article\"><div class=\"advertory-vg-netboard__article\" id=\"netboard_6\"></div></div><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">– Det oppleves dypt urettferdig at moren vår nektes et siste forsøk, selv om hun tar både kostnad og risiko innenfor en ordning som er ment å gi håp til alvorlig syke uten behandlingsalternativer,  sier datteren Tilde Thorleifsson. </p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\"><strong class=\"_strong_o9xde_25\">– Et nei i en slik situasjon er ikke nøytralt – det er et valg om å beskytte systemet fremfor å vise medmenneskelighet.</strong></p><astro-island await-children client=\"visible\" component-export=\"Image\" component-url=\"https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/Image.r_XTj6LO.js\" opts=\"{&quot;name&quot;:&quot;Image&quot;,&quot;value&quot;:true}\" prefix=\"r173\" props=\"{&quot;alt&quot;:[0],&quot;caption&quot;:[0,&quot;Foto: Line Møller / VG&quot;],&quot;device&quot;:[0],&quot;editorialJudgment&quot;:[0],&quot;imageAsset&quot;:[0,{&quot;id&quot;:[0,&quot;c39bab02-14e7-47f8-b850-e1ec78a6195e&quot;],&quot;size&quot;:[0,{&quot;width&quot;:[0,4866],&quot;height&quot;:[0,3651]}],&quot;urls&quot;:[1,[[0,{&quot;height&quot;:[0,30],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=40&amp;s=627966fce50ef76c6a217f4373dc2b92092ed531&quot;],&quot;width&quot;:[0,40]}],[0,{&quot;height&quot;:[0,60],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=80&amp;s=621e555f162f7f1bd60e7e4f8859420d1b1c4131&quot;],&quot;width&quot;:[0,80]}],[0,{&quot;height&quot;:[0,75],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=100&amp;s=b7f901f2655ecb954f0ff2deb4b0431d0d00e4b8&quot;],&quot;width&quot;:[0,100]}],[0,{&quot;height&quot;:[0,150],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=200&amp;s=ffbad8afa51aaeba2ee3a636945eaa7775a78b96&quot;],&quot;width&quot;:[0,200]}],[0,{&quot;height&quot;:[0,180],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=240&amp;s=6f83cdb9e97431536dbdeff1cbf3b9aa5a1731eb&quot;],&quot;width&quot;:[0,240]}],[0,{&quot;height&quot;:[0,360],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=480&amp;s=323f4826a92e7c1cdbe75967217dbb543808b027&quot;],&quot;width&quot;:[0,480]}],[0,{&quot;height&quot;:[0,435],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=580&amp;s=1e2f875acb7526aeec47f548c3f3336a3936b020&quot;],&quot;width&quot;:[0,580]}],[0,{&quot;height&quot;:[0,540],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=720&amp;s=8c493154cbc69d8b6ed49f34d06ba07f3fd9ea0f&quot;],&quot;width&quot;:[0,720]}],[0,{&quot;height&quot;:[0,810],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=1080&amp;s=35f1a532c71416f45c82d834ccbcc0eced3c124e&quot;],&quot;width&quot;:[0,1080]}],[0,{&quot;height&quot;:[0,1080],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=1440&amp;s=01950fdd1ed81f519c0a3e50d2b5e2959d5a8ba3&quot;],&quot;width&quot;:[0,1440]}],[0,{&quot;height&quot;:[0,1621],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=2160&amp;s=6ebaf4bcc243258763f35217203e4c59ede3379d&quot;],&quot;width&quot;:[0,2160]}]]]}],&quot;layout&quot;:[0],&quot;marginBottom&quot;:[0],&quot;padded&quot;:[0],&quot;type&quot;:[0,&quot;news&quot;]}\" renderer-url=\"https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/client.B4ukvwq6.js\" ssr uid=\"FQC7S\"><figure class=\"_figure_qp4xg_1 layout-component layout-normal\"><img alt=\"Foto: Line Møller / VG\" class=\"_image_qp4xg_65 layout-component layout-normal\" data-fullscreen-sizes=\"(min-width: 1000px) 2000px, 2000vw\" data-track-element-type=\"Article image fullscreen\" data-track-name=\"ImageFullscreen\" decoding=\"async\" height=\"3651\" itemprop=\"image\" loading=\"lazy\" sizes=\"(min-width: 980px) 980px, 100vw\" src=\"https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=40&amp;s=627966fce50ef76c6a217f4373dc2b92092ed531\" srcset=\"https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=40&amp;s=627966fce50ef76c6a217f4373dc2b92092ed531 40w, https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=80&amp;s=621e555f162f7f1bd60e7e4f8859420d1b1c4131 80w, https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=100&amp;s=b7f901f2655ecb954f0ff2deb4b0431d0d00e4b8 100w, https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=200&amp;s=ffbad8afa51aaeba2ee3a636945eaa7775a78b96 200w, https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=240&amp;s=6f83cdb9e97431536dbdeff1cbf3b9aa5a1731eb 240w, https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=480&amp;s=323f4826a92e7c1cdbe75967217dbb543808b027 480w, https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=580&amp;s=1e2f875acb7526aeec47f548c3f3336a3936b020 580w, https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=720&amp;s=8c493154cbc69d8b6ed49f34d06ba07f3fd9ea0f 720w, https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=1080&amp;s=35f1a532c71416f45c82d834ccbcc0eced3c124e 1080w, https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=1440&amp;s=01950fdd1ed81f519c0a3e50d2b5e2959d5a8ba3 1440w, https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=2160&amp;s=6ebaf4bcc243258763f35217203e4c59ede3379d 2160w\" style=\"object-position:0% 0%\" width=\"4866\"><figcaption class=\"text-sans-s _caption_qp4xg_10 layout-component layout-padded\">Foto: Line Møller / VG</figcaption></figure><!--astro:end--></astro-island><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">Hun og broren Mandius har sett mamma bli stadig mer preget av sykdommen.</p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">– Når alternativet er en sikker død, opplever vi det som etisk uforståelig at frykten for å gjøre feil veier tyngre enn viljen til å gi håp, sier datteren. </p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">– Hvis behandlingen senere viser seg å ha effekt, vil det være tungt å leve med at hun ble nektet denne muligheten mens tiden fortsatt fantes. For meg som datter er dette først og fremst et etisk spørsmål om hvordan et system kan nekte døende et siste håp.</p><h2 class=\"_heading_o9xde_1 _heading_xtcu6_1 _heading_1rauo_1 layout-component text-serif-m layout-normal layout-padded\" id=\"Forsker: – Stanset sykdomsutviklingen\"> Forsker: – Stanset sykdomsutviklingen</h2><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">Ann Logan, professor i <abbr class=\"_explanation_o9xde_140\" tabindex=\"0\" title=\"Nevrodegenerative sykdommer er sykdommer som rammer hjernen, ryggmargen eller perifere nerver hvor det gradvis blir en nedbryting av nervevevet.\n\nVanlige nevrodegenerative sykdommer som rammer hjernen er: Alzheimers sykdom, Parkinsons sykdom og Huntingtons sykdom. Nevrodegenerative sykdommer som rammer ryggmarg og perifere nerver kan være: arvelig spastisk paraparese og nevropatier.\">regenerativ<span aria-hidden=\"true\" class=\"text-sans-s _title_o9xde_151\" role=\"presentation\"><span class=\"text-serif-l _word_o9xde_156\">regenerativ</span>Nevrodegenerative sykdommer er sykdommer som rammer hjernen, ryggmargen eller perifere nerver hvor det gradvis blir en nedbryting av nervevevet.\n\nVanlige nevrodegenerative sykdommer som rammer hjernen er: Alzheimers sykdom, Parkinsons sykdom og Huntingtons sykdom. Nevrodegenerative sykdommer som rammer ryggmarg og perifere nerver kan være: arvelig spastisk paraparese og nevropatier.</span></abbr> medisin ved University of Warwick i England, er ansvarlig for den svensk/britiske studien. </p><div class=\"advertory-vg-netboard-wrapper__article\"><div class=\"advertory-vg-netboard__article\" id=\"netboard_7\"></div></div><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\"><a class=\"_link_o9xde_39\" href=\"https://www.neurologiisverige.se/wp-content/uploads/2025/02/Neurologi-i-Sverige-Nr-1-ALS-1.pdf\">Til tidsskriftet Neurologi i Sverige, sier hun</a>: </p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">– Ingen andre ALS-legemidler har vist tilsvarende sykdomsmodifiserende effekter. </p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">Hun mener ILB tilhører neste generasjons legemidler som kan beskytte og reparere sykt og skadet nerve- og muskelvev.</p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">– Dette innebærer at det åpnes nye muligheter for å utvikle en helt ny klasse av <abbr class=\"_explanation_o9xde_140\" tabindex=\"0\" title=\" Medisiner som er utviklet for å beskytte, reparere eller regenerere skadet nerve- og muskelvev.\">neuroregenerative <span aria-hidden=\"true\" class=\"text-sans-s _title_o9xde_151\" role=\"presentation\"><span class=\"text-serif-l _word_o9xde_156\">neuroregenerative </span> Medisiner som er utviklet for å beskytte, reparere eller regenerere skadet nerve- og muskelvev.</span></abbr>legemidler. Det vi ser kan være et <abbr class=\"_explanation_o9xde_140\" tabindex=\"0\" title=\"En grunnleggende endring i måten man tenker på eller gjør ting, ofte brukt i vitenskapelige eller teknologiske sammenhenger.\">paradigmeskifte <span aria-hidden=\"true\" class=\"text-sans-s _title_o9xde_151\" role=\"presentation\"><span class=\"text-serif-l _word_o9xde_156\">paradigmeskifte </span>En grunnleggende endring i måten man tenker på eller gjør ting, ofte brukt i vitenskapelige eller teknologiske sammenhenger.</span></abbr>ved behandling av ALS. Jeg forsvarer selvsagt arbeidet mitt med ILB fullt ut, og står bak alle uttalelser og sitater som er tillagt meg, sier professor Logan til VG.</p><section class=\"_portrait_ygndg_1 layout-component layout-normal layout-padded\" data-body=\"false\"><figure style=\"display:contents\"><picture class=\"_picture_ygndg_60\"><img alt=\"Bilde av University of Warwick/Researchgate\" class=\"_image_ygndg_42\" height=\"40\" itemprop=\"image\" loading=\"lazy\" sizes=\"480px\" src=\"https://akamai.vgc.no/v2/images/56e3e362-e0d7-4444-8407-72a8c54a924f?format=auto&amp;w=40&amp;s=f23ad4aad6348de7b555671d58adf9782cecfdb9\" srcset=\"https://akamai.vgc.no/v2/images/56e3e362-e0d7-4444-8407-72a8c54a924f?format=auto&amp;w=40&amp;s=f23ad4aad6348de7b555671d58adf9782cecfdb9 40w, https://akamai.vgc.no/v2/images/56e3e362-e0d7-4444-8407-72a8c54a924f?format=auto&amp;w=80&amp;s=7b5f0dfcf3609ae822fa049183e375e8a69b87c8 80w, https://akamai.vgc.no/v2/images/56e3e362-e0d7-4444-8407-72a8c54a924f?format=auto&amp;w=100&amp;s=7bcf3b8db94f9f3ec9496130879cbc53ee4fb1fb 100w, https://akamai.vgc.no/v2/images/56e3e362-e0d7-4444-8407-72a8c54a924f?format=auto&amp;w=200&amp;s=27812bc8fbd2f71c806baa6cbba91bed744f5d53 200w, https://akamai.vgc.no/v2/images/56e3e362-e0d7-4444-8407-72a8c54a924f?format=auto&amp;w=240&amp;s=887bfcffc343e9c1b32d8fbd08b7c55c2ee55ff8 240w, https://akamai.vgc.no/v2/images/56e3e362-e0d7-4444-8407-72a8c54a924f?format=auto&amp;w=480&amp;s=599b22a5535dbd83bab375a9d2b1d2f2e4d12f38 480w\" width=\"40\"></picture><figcaption class=\"_details_ygndg_24\"><strong class=\"_name_ygndg_51 title-serif-xs\">University of Warwick/Researchgate</strong><p class=\"_paragraph_o9xde_4 text-sans-m _description_ygndg_56\">Professor Ann Logan er forsker ved University of Warwick i England</p></figcaption></figure></section><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">Svenske <a class=\"_link_o9xde_39\" href=\"https://neurologisktidskrift.se/sjukdomar/als/92-ny-metod-har-potentialen-att-bli-forsta-sjukdomsmodifierande-behandling-for-als.html\">«Neurologisk Tidskrift»</a> skriver at prosjekt hun ledet kan ha funnet en metode som påvirker mekanismer som har betydning for utviklingen av ALS og andre <abbr class=\"_explanation_o9xde_140\" tabindex=\"0\" title=\"Nevrodegenerative sykdommer er en gruppe lidelser der nerveceller i hjernen, ryggmargen eller perifere nerver gradvis brytes ned og dør, noe som fører til progressive tap av funksjoner. Vanlige eksempler inkluderer Alzheimers sykdom, Parkinsons sykdom, Huntingtons sykdom og ALS, som alle medfører ulike symptomer som kognitiv svikt, bevegelsesproblemer, skjelving og muskelsvakhet. Disse sykdommene kjennetegnes av at de ikke-replikerbare nervecellene går tapt over tid, og de kan være både arvelige og sporadiske\">nevrodegenerative sykdommer. <span aria-hidden=\"true\" class=\"text-sans-s _title_o9xde_151\" role=\"presentation\"><span class=\"text-serif-l _word_o9xde_156\">nevrodegenerative sykdommer. </span>Nevrodegenerative sykdommer er en gruppe lidelser der nerveceller i hjernen, ryggmargen eller perifere nerver gradvis brytes ned og dør, noe som fører til progressive tap av funksjoner. Vanlige eksempler inkluderer Alzheimers sykdom, Parkinsons sykdom, Huntingtons sykdom og ALS, som alle medfører ulike symptomer som kognitiv svikt, bevegelsesproblemer, skjelving og muskelsvakhet. Disse sykdommene kjennetegnes av at de ikke-replikerbare nervecellene går tapt over tid, og de kan være både arvelige og sporadiske</span></abbr></p><h2 class=\"_heading_o9xde_1 _heading_xtcu6_1 _heading_1rauo_1 layout-component text-serif-m layout-normal layout-padded\" id=\"DMP: – Ikke godkjent og ikke forsvarlig\"> DMP: – Ikke godkjent og ikke forsvarlig</h2><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">Direktoratet for medisinske produkter (<abbr class=\"_explanation_o9xde_140\" tabindex=\"0\" title=\"En offentlig etat som har ansvar for å regulere og overvåke medisinske produkter, inkludert legemidler, for å sikre at de er trygge og effektive.\">DMP<span aria-hidden=\"true\" class=\"text-sans-s _title_o9xde_151\" role=\"presentation\"><span class=\"text-serif-l _word_o9xde_156\">DMP</span>En offentlig etat som har ansvar for å regulere og overvåke medisinske produkter, inkludert legemidler, for å sikre at de er trygge og effektive.</span></abbr>) slår fast at bruken av legemiddelet ILB ikke kan anses som forsvarlig. </p><div class=\"advertory-vg-netboard-wrapper__article\"><div class=\"advertory-vg-netboard__article\" id=\"netboard_8\"></div></div><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">DMP viser til at medisinen ikke er godkjent i noe land og kun er testet i små, tidlige fase 1- og 2-studier, uten dokumentasjon på klinisk effekt. </p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\"><strong class=\"_strong_o9xde_25\">– Systemet er umenneskelig. De vil beskytte seg selv. Men de må ikke ta fra oss håpet, sier Tallak, Kirstens ektemann og nærmeste støtte. </strong></p><astro-island await-children client=\"visible\" component-export=\"Image\" component-url=\"https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/Image.r_XTj6LO.js\" opts=\"{&quot;name&quot;:&quot;Image&quot;,&quot;value&quot;:true}\" prefix=\"r191\" props=\"{&quot;alt&quot;:[0],&quot;caption&quot;:[0,&quot;Foto: Line Møller / 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renderer-url=\"https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/client.B4ukvwq6.js\" ssr uid=\"Z1YkWk1\"><figure class=\"_figure_qp4xg_1 layout-component layout-normal\"><img alt=\"Foto: Line Møller / VG\" class=\"_image_qp4xg_65 layout-component layout-normal\" data-fullscreen-sizes=\"(min-width: 1000px) 2000px, 2000vw\" data-track-element-type=\"Article image fullscreen\" data-track-name=\"ImageFullscreen\" decoding=\"async\" height=\"4558\" itemprop=\"image\" loading=\"lazy\" sizes=\"(min-width: 980px) 980px, 100vw\" src=\"https://akamai.vgc.no/v2/images/ab2453be-f4b0-4063-9986-3071031f83a9?format=auto&amp;w=40&amp;s=edc2455b7f90da9c288def8a26dcbfa4dcb1c297\" srcset=\"https://akamai.vgc.no/v2/images/ab2453be-f4b0-4063-9986-3071031f83a9?format=auto&amp;w=40&amp;s=edc2455b7f90da9c288def8a26dcbfa4dcb1c297 40w, https://akamai.vgc.no/v2/images/ab2453be-f4b0-4063-9986-3071031f83a9?format=auto&amp;w=80&amp;s=d231fcb52d81fa2557ca2e3f4231e680763053b4 80w, https://akamai.vgc.no/v2/images/ab2453be-f4b0-4063-9986-3071031f83a9?format=auto&amp;w=100&amp;s=eb23c6740f1b7d64cfbe78f54a50ff7b2d9985ee 100w, https://akamai.vgc.no/v2/images/ab2453be-f4b0-4063-9986-3071031f83a9?format=auto&amp;w=200&amp;s=0eae3d5ae4cfa1f88fadb655bbfe9403ea4dad96 200w, https://akamai.vgc.no/v2/images/ab2453be-f4b0-4063-9986-3071031f83a9?format=auto&amp;w=240&amp;s=da9d3fe6bb573dbb44a5d5557f5edec5db223918 240w, https://akamai.vgc.no/v2/images/ab2453be-f4b0-4063-9986-3071031f83a9?format=auto&amp;w=480&amp;s=61af717e5da4f3ea5d9c9efd831a31d4d21a4fc9 480w, https://akamai.vgc.no/v2/images/ab2453be-f4b0-4063-9986-3071031f83a9?format=auto&amp;w=580&amp;s=5c3eee4042a4182a4505a68385884d9098637d95 580w, https://akamai.vgc.no/v2/images/ab2453be-f4b0-4063-9986-3071031f83a9?format=auto&amp;w=720&amp;s=f3905185461f90cd68145430eca6437fd964bf64 720w, https://akamai.vgc.no/v2/images/ab2453be-f4b0-4063-9986-3071031f83a9?format=auto&amp;w=1080&amp;s=5a90da51d5c43fedcd19e827bf69f36e02353c88 1080w, https://akamai.vgc.no/v2/images/ab2453be-f4b0-4063-9986-3071031f83a9?format=auto&amp;w=1440&amp;s=600fb62ce32b13496cf08686ee31bf17675951df 1440w, https://akamai.vgc.no/v2/images/ab2453be-f4b0-4063-9986-3071031f83a9?format=auto&amp;w=2160&amp;s=ddfab71f4e39b671d2d89d78a6135a4c2894d3f3 2160w\" style=\"object-position:0% 0%\" width=\"6077\"><figcaption class=\"text-sans-s _caption_qp4xg_10 layout-component layout-padded\">Foto: Line Møller / VG</figcaption></figure><!--astro:end--></astro-island><ul class=\"_list_o9xde_3 _list_xtcu6_9 _unordered_o9xde_106 layout-component text-serif-m layout-normal text-serif-m layout-padded\"><li class=\"_item_o9xde_30\">Oslo universitetssykehus opplyser på forskningsprosjektets hjemmeside at hos ALS-pasienter har <strong class=\"_strong_o9xde_25\">sikkerheten og den foreløpige effekten av ILB tidligere blitt undersøkt i to studier med til sammen 24 deltagere. </strong></li><li class=\"_item_o9xde_30\">I begge studiene ble det rapportert at pasientgruppen<strong class=\"_strong_o9xde_25\"> tålte medisinen godt</strong>. De fleste <strong class=\"_strong_o9xde_25\">bivirkningene var milde eller moderate,</strong> de var kortvarige og trengte liten eller ingen behandling. </li><li class=\"_item_o9xde_30\">OUS skriver at h<strong class=\"_strong_o9xde_25\">ensikten med prosjektet er å måle effekten og sikkerheten av ILB </strong>sammenlignet med den nåværende standardbehandlingen, Riluzol.</li></ul><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">– Det finnes hverken vurdering av nytte- eller risikoprofil, preparatomtale eller kvalitetssikret informasjon om dosering og bivirkninger. Usikkerheten rundt sikkerhet og effekt vurderes som betydelig. Selv ved alvorlig sykdom som ALS kan ikke manglende behandlingsalternativer oppveie kravet til dokumentasjon, skriver Direktoratet for Medisinske Produkter til VG. </p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\"><strong class=\"_strong_o9xde_25\">Direktoratet understreker at forsvarlighetskravet er absolutt og ikke kan fravikes. </strong></p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">– Vilkårene for godkjenningsfritak er ikke oppfylt, skriver overlege Ingrid Aas i Direktoratet for medisinske produkter til VG.</p><h2 class=\"_heading_o9xde_1 _heading_xtcu6_1 _heading_1rauo_1 layout-component text-serif-m layout-normal layout-padded\" id=\"Avslag prøves i svensk rett\"> Avslag prøves i svensk rett</h2><astro-island await-children client=\"visible\" component-export=\"FactBox\" component-url=\"https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/FactBox.BF0-FmDg.js\" opts=\"{&quot;name&quot;:&quot;FactBox&quot;,&quot;value&quot;:true}\" prefix=\"r197\" props=\"{&quot;component&quot;:[0,{&quot;title&quot;:[0,{&quot;value&quot;:[0,&quot;Prøves i svensk rett&quot;]}],&quot;paragraphs&quot;:[1,[[0,{&quot;text&quot;:[0,{&quot;value&quot;:[0,&quot;Björn Pilström som er administrerende direktør og medisinsk direktør ​ i Tikomed, bekrefter overfor VG at ILB kun er testet for effekt i to små fase 2-studier med totalt 24 pasienter. Det er også testet for sikkerhet i fire fase 1-studier. Sammenlagt har drøyt 90 pasienter deltatt. &quot;],&quot;markup&quot;:[1,[[0,{&quot;type&quot;:[0,&quot;style:strong&quot;],&quot;offset&quot;:[0,105],&quot;length&quot;:[0,1]}],[0,{&quot;type&quot;:[0,&quot;explanation&quot;],&quot;offset&quot;:[0,144],&quot;length&quot;:[0,15],&quot;symbol&quot;:[0,&quot;I en fase 2-studie deltar flere pasienter. Man undersøker blant annet effekt, om bivirkninger er akesptable og trygghet for pasienten.&quot;]}],[0,{&quot;type&quot;:[0,&quot;style:strong&quot;],&quot;offset&quot;:[0,144],&quot;length&quot;:[0,15]}],[0,{&quot;type&quot;:[0,&quot;explanation&quot;],&quot;offset&quot;:[0,224],&quot;length&quot;:[0,14],&quot;symbol&quot;:[0,&quot;En fase 1-studie er første gang en ny behandling testes på mennesker. Målet er å finne ut om behandlingen er trygg,  eventuelle bivirkninger og dose medsin. Det er ofte få deltakere. &quot;]}],[0,{&quot;type&quot;:[0,&quot;style:strong&quot;],&quot;offset&quot;:[0,224],&quot;length&quot;:[0,14]}]]]}],&quot;blockType&quot;:[0,&quot;paragraph&quot;]}],[0,{&quot;text&quot;:[0,{&quot;value&quot;:[0,&quot;– Jeg har ingen mening om myndighetens vurdering av hvorvidt bruk av ILB kan anses forsvarlig, men det er likevel verdt å merke seg at Oslo universitetssykehus har startet sin randomiserte fase 2-studie med litt over 100 pasienter, der den ene behandlingsgruppen får ILB, sier Pihlstrøm. &quot;],&quot;markup&quot;:[0]}],&quot;blockType&quot;:[0,&quot;paragraph&quot;]}],[0,{&quot;text&quot;:[0,{&quot;value&quot;:[0,&quot;I en randomisert fase 2-studie blir pasientene tilfeldig fordelt mellom ulike behandlinger for å undersøke effekt og bivirkninger.&quot;],&quot;markup&quot;:[0]}],&quot;blockType&quot;:[0,&quot;paragraph&quot;]}],[0,{&quot;text&quot;:[0,{&quot;value&quot;:[0,&quot;Pilstrøm bekrefter at også det svenske Legemiddelverket har avslått søknader fra ALS-pasienter som ønsker å bruke ILB. &quot;],&quot;markup&quot;:[0]}],&quot;blockType&quot;:[0,&quot;paragraph&quot;]}],[0,{&quot;text&quot;:[0,{&quot;value&quot;:[0,&quot;– Dette prøves nå for svensk domstol, sier han.&quot;],&quot;markup&quot;:[0]}],&quot;blockType&quot;:[0,&quot;paragraph&quot;]}],[0,{&quot;text&quot;:[0,{&quot;value&quot;:[0,&quot;I Forvaltningsretten i Sverige er det nylig avsagt dom mot legemiddelverket. En ALS-pasient fikk avslag på å bruke ILB på lisens og gikk til sak. Retten stilte spørsmål ved avgjørelsen og ba legemiddelverket vurdere saken på nytt. Begrunnelsen er forskningen som finnes på ILB og manglende behandlingsalternativ for pasienten.&quot;],&quot;markup&quot;:[0]}],&quot;blockType&quot;:[0,&quot;paragraph&quot;]}]]],&quot;type&quot;:[0,&quot;fact&quot;]}],&quot;type&quot;:[0,&quot;news&quot;]}\" renderer-url=\"https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/client.B4ukvwq6.js\" ssr uid=\"ZlDS1Y\"><div class=\"_factbox_16v91_30 layout-component layout-normal\"><section aria-expanded=\"false\" aria-label=\"Utvid\" class=\"_box_1mfx9_1 font-vg-sans layout-component layout-normal _box_16v91_39\" id=\"«r197R0»\" role=\"region\" style=\"max-height:var(--height)\"><h2 class=\"_title_16v91_25 title-serif-s\">Prøves i svensk rett</h2><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 _paragraph_16v91_10 layout-component text-serif-m layout-normal text-sans-m layout-padded\">Björn Pilström som er administrerende direktør og medisinsk direktør ​ i Tikomed, bekrefter overfor VG at<strong class=\"_strong_o9xde_25\"> </strong>ILB kun er testet for effekt i to små <abbr class=\"_explanation_o9xde_140\" tabindex=\"0\" title=\"I en fase 2-studie deltar flere pasienter. Man undersøker blant annet effekt, om bivirkninger er akesptable og trygghet for pasienten.\"><strong class=\"_strong_o9xde_25\">fase 2-studier </strong><span aria-hidden=\"true\" class=\"text-sans-s _title_o9xde_151 _title_16v91_25\" role=\"presentation\"><span class=\"text-serif-l _word_o9xde_156\"><strong class=\"_strong_o9xde_25\">fase 2-studier </strong></span>I en fase 2-studie deltar flere pasienter. Man undersøker blant annet effekt, om bivirkninger er akesptable og trygghet for pasienten.</span></abbr>med totalt 24 pasienter. Det er også testet for sikkerhet i fire <abbr class=\"_explanation_o9xde_140\" tabindex=\"0\" title=\"En fase 1-studie er første gang en ny behandling testes på mennesker. Målet er å finne ut om behandlingen er trygg,  eventuelle bivirkninger og dose medsin. Det er ofte få deltakere. \"><strong class=\"_strong_o9xde_25\">fase 1-studier</strong><span aria-hidden=\"true\" class=\"text-sans-s _title_o9xde_151 _title_16v91_25\" role=\"presentation\"><span class=\"text-serif-l _word_o9xde_156\"><strong class=\"_strong_o9xde_25\">fase 1-studier</strong></span>En fase 1-studie er første gang en ny behandling testes på mennesker. Målet er å finne ut om behandlingen er trygg,  eventuelle bivirkninger og dose medsin. Det er ofte få deltakere. </span></abbr>. Sammenlagt har drøyt 90 pasienter deltatt. </p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 _paragraph_16v91_10 layout-component text-serif-m layout-normal text-sans-m layout-padded\">– Jeg har ingen mening om myndighetens vurdering av hvorvidt bruk av ILB kan anses forsvarlig, men det er likevel verdt å merke seg at Oslo universitetssykehus har startet sin randomiserte fase 2-studie med litt over 100 pasienter, der den ene behandlingsgruppen får ILB, sier Pihlstrøm. </p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 _paragraph_16v91_10 layout-component text-serif-m layout-normal text-sans-m layout-padded\">I en randomisert fase 2-studie blir pasientene tilfeldig fordelt mellom ulike behandlinger for å undersøke effekt og bivirkninger.</p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 _paragraph_16v91_10 layout-component text-serif-m layout-normal text-sans-m layout-padded\">Pilstrøm bekrefter at også det svenske Legemiddelverket har avslått søknader fra ALS-pasienter som ønsker å bruke ILB. </p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 _paragraph_16v91_10 layout-component text-serif-m layout-normal text-sans-m layout-padded\">– Dette prøves nå for svensk domstol, sier han.</p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 _paragraph_16v91_10 layout-component text-serif-m layout-normal text-sans-m layout-padded\">I Forvaltningsretten i Sverige er det nylig avsagt dom mot legemiddelverket. En ALS-pasient fikk avslag på å bruke ILB på lisens og gikk til sak. Retten stilte spørsmål ved avgjørelsen og ba legemiddelverket vurdere saken på nytt. Begrunnelsen er forskningen som finnes på ILB og manglende behandlingsalternativ for pasienten.</p><button aria-controls=\"«r197R0»\" class=\"_button_6bkpv_2 button-label-large _hug_6bkpv_81 _filled_6bkpv_106 _button_1mfx9_76\" data-track-element-type=\"Factbox\" data-track-id=\"factbox:proeves-i-svensk-rett\" data-track-impression=\"true\" data-track-name=\"Prøves i svensk rett\" role=\"button\" type=\"button\"><span>Vis <!-- -->mer</span></button></section></div><!--astro:end--></astro-island><h2 class=\"_heading_o9xde_1 _heading_xtcu6_1 _heading_1rauo_1 layout-component text-serif-m layout-normal layout-padded\" id=\"– Gis ingen sjanse\"> – Gis ingen sjanse</h2><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">Kjartan Børdal Hovgaard (52) er alvorlig ALS-syk. Via lege har også han søkt om å få bruke ILB. Kjartan har vært selvstendig næringsdrivende innen fiskeoppdrett hjemme i Sogndal. </p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">Han er samboer og tenåringspappa.</p><astro-island await-children client=\"visible\" component-export=\"Image\" component-url=\"https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/Image.r_XTj6LO.js\" opts=\"{&quot;name&quot;:&quot;Image&quot;,&quot;value&quot;:true}\" prefix=\"r201\" props=\"{&quot;alt&quot;:[0],&quot;caption&quot;:[0,&quot;KJEMPER: Kjartan Børdal Hovgaard (t.h) er familiefar og pappa til tenåringer. Han er alvorlig syk med ALS. Broren Hektor og familien gjør alt de kan for å støtte ham. Kjartan får heller ikke medisinen ILB.   Foto: Privat&quot;],&quot;device&quot;:[0],&quot;editorialJudgment&quot;:[0],&quot;imageAsset&quot;:[0,{&quot;id&quot;:[0,&quot;6298afdc-fdc7-404f-aeeb-070b4a78206a&quot;],&quot;size&quot;:[0,{&quot;width&quot;:[0,1400],&quot;height&quot;:[0,1600]}],&quot;urls&quot;:[1,[[0,{&quot;height&quot;:[0,46],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/6298afdc-fdc7-404f-aeeb-070b4a78206a?format=auto&amp;w=40&amp;s=374a703877a0599e179cffa0fe5dc95c8cb13f76&quot;],&quot;width&quot;:[0,40]}],[0,{&quot;height&quot;:[0,91],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/6298afdc-fdc7-404f-aeeb-070b4a78206a?format=auto&amp;w=80&amp;s=e8f7e2c4a474d79b22b4bfebcf3c493d99435399&quot;],&quot;width&quot;:[0,80]}],[0,{&quot;height&quot;:[0,114],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/6298afdc-fdc7-404f-aeeb-070b4a78206a?format=auto&amp;w=100&amp;s=b5c9fba4fa24f19afb753555abbe6001edc8335d&quot;],&quot;width&quot;:[0,100]}],[0,{&quot;height&quot;:[0,229],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/6298afdc-fdc7-404f-aeeb-070b4a78206a?format=auto&amp;w=200&amp;s=3bdcf67fbcbae1164f3bb6c202d11c998d906d20&quot;],&quot;width&quot;:[0,200]}],[0,{&quot;height&quot;:[0,274],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/6298afdc-fdc7-404f-aeeb-070b4a78206a?format=auto&amp;w=240&amp;s=a2e452d20a85720025411da50daea74b9a52d1e7&quot;],&quot;width&quot;:[0,240]}],[0,{&quot;height&quot;:[0,549],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/6298afdc-fdc7-404f-aeeb-070b4a78206a?format=auto&amp;w=480&amp;s=dd73f476a326371b5ce7a6b89a09ef8aa3567e1d&quot;],&quot;width&quot;:[0,480]}],[0,{&quot;height&quot;:[0,663],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/6298afdc-fdc7-404f-aeeb-070b4a78206a?format=auto&amp;w=580&amp;s=60e06538ee4a31d6b67c5c5042e93abf747acbb1&quot;],&quot;width&quot;:[0,580]}],[0,{&quot;height&quot;:[0,823],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/6298afdc-fdc7-404f-aeeb-070b4a78206a?format=auto&amp;w=720&amp;s=9981f2c65b2f51650c8952f28fbb49a6266cd8bf&quot;],&quot;width&quot;:[0,720]}],[0,{&quot;height&quot;:[0,1234],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/6298afdc-fdc7-404f-aeeb-070b4a78206a?format=auto&amp;w=1080&amp;s=c181122072c287c9d3b3829987c9b425d18a403e&quot;],&quot;width&quot;:[0,1080]}]]]}],&quot;layout&quot;:[0],&quot;marginBottom&quot;:[0],&quot;padded&quot;:[0],&quot;type&quot;:[0,&quot;news&quot;]}\" renderer-url=\"https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/client.B4ukvwq6.js\" ssr uid=\"Z28cVD5\"><figure class=\"_figure_qp4xg_1 layout-component layout-normal\"><img alt=\"KJEMPER: Kjartan Børdal Hovgaard (t.h) er familiefar og pappa til tenåringer. Han er alvorlig syk med ALS. Broren Hektor og familien gjør alt de kan for å støtte ham. Kjartan får heller ikke medisinen ILB.   Foto: Privat\" class=\"_image_qp4xg_65 layout-component layout-normal\" data-fullscreen-sizes=\"(min-width: 1000px) 2000px, 2000vw\" data-track-element-type=\"Article image fullscreen\" data-track-name=\"ImageFullscreen\" decoding=\"async\" height=\"1600\" itemprop=\"image\" loading=\"lazy\" sizes=\"(min-width: 980px) 980px, 100vw\" src=\"https://akamai.vgc.no/v2/images/6298afdc-fdc7-404f-aeeb-070b4a78206a?format=auto&amp;w=40&amp;s=374a703877a0599e179cffa0fe5dc95c8cb13f76\" srcset=\"https://akamai.vgc.no/v2/images/6298afdc-fdc7-404f-aeeb-070b4a78206a?format=auto&amp;w=40&amp;s=374a703877a0599e179cffa0fe5dc95c8cb13f76 40w, https://akamai.vgc.no/v2/images/6298afdc-fdc7-404f-aeeb-070b4a78206a?format=auto&amp;w=80&amp;s=e8f7e2c4a474d79b22b4bfebcf3c493d99435399 80w, https://akamai.vgc.no/v2/images/6298afdc-fdc7-404f-aeeb-070b4a78206a?format=auto&amp;w=100&amp;s=b5c9fba4fa24f19afb753555abbe6001edc8335d 100w, https://akamai.vgc.no/v2/images/6298afdc-fdc7-404f-aeeb-070b4a78206a?format=auto&amp;w=200&amp;s=3bdcf67fbcbae1164f3bb6c202d11c998d906d20 200w, https://akamai.vgc.no/v2/images/6298afdc-fdc7-404f-aeeb-070b4a78206a?format=auto&amp;w=240&amp;s=a2e452d20a85720025411da50daea74b9a52d1e7 240w, https://akamai.vgc.no/v2/images/6298afdc-fdc7-404f-aeeb-070b4a78206a?format=auto&amp;w=480&amp;s=dd73f476a326371b5ce7a6b89a09ef8aa3567e1d 480w, https://akamai.vgc.no/v2/images/6298afdc-fdc7-404f-aeeb-070b4a78206a?format=auto&amp;w=580&amp;s=60e06538ee4a31d6b67c5c5042e93abf747acbb1 580w, https://akamai.vgc.no/v2/images/6298afdc-fdc7-404f-aeeb-070b4a78206a?format=auto&amp;w=720&amp;s=9981f2c65b2f51650c8952f28fbb49a6266cd8bf 720w, https://akamai.vgc.no/v2/images/6298afdc-fdc7-404f-aeeb-070b4a78206a?format=auto&amp;w=1080&amp;s=c181122072c287c9d3b3829987c9b425d18a403e 1080w\" style=\"object-position:0% 0%\" width=\"1400\"><figcaption class=\"text-sans-s _caption_qp4xg_10 layout-component layout-padded\">KJEMPER: Kjartan Børdal Hovgaard (t.h) er familiefar og pappa til tenåringer. Han er alvorlig syk med ALS. Broren Hektor og familien gjør alt de kan for å støtte ham. Kjartan får heller ikke medisinen ILB.   Foto: Privat</figcaption></figure><!--astro:end--></astro-island><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">Friluftsmannen var vant til å ferdes til fjells. I 2017 begynte han å snuble på stiene. </p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">En venn døde av ALS i 2019. Kjartan var kjent med sykdomstegnene. </p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">ALS rammet hardt.</p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\"><strong class=\"_strong_o9xde_25\">– ILB er godkjent for prosjektet ved OUS. Men det godkjennes ikke for pasienter som er så syke at de har kort tid igjen hvis de ikke får medisinen. Det er blankt nei. I Norge er det mange ALS-pasienter som ikke gis en sjanse til å overleve, sier Hektor Hovgaard, Kjartans bror. </strong></p><astro-island await-children client=\"visible\" component-export=\"Image\" component-url=\"https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/Image.r_XTj6LO.js\" opts=\"{&quot;name&quot;:&quot;Image&quot;,&quot;value&quot;:true}\" prefix=\"r206\" props=\"{&quot;alt&quot;:[0],&quot;caption&quot;:[0,&quot;FRILUFTSMANN: Kjartan Børdal Hovgaard begynte å snuble på stiene i fjellet. Det var startet på svært alvorlig sykdom.   Foto: Privat&quot;],&quot;device&quot;:[0],&quot;editorialJudgment&quot;:[0],&quot;imageAsset&quot;:[0,{&quot;id&quot;:[0,&quot;2bf18d07-5e1d-4319-ac38-eb952d37b68b&quot;],&quot;size&quot;:[0,{&quot;width&quot;:[0,1599],&quot;height&quot;:[0,1049]}],&quot;urls&quot;:[1,[[0,{&quot;height&quot;:[0,26],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=40&amp;s=c9f2430ea493e95b3cb80eda1471341aceb61827&quot;],&quot;width&quot;:[0,40]}],[0,{&quot;height&quot;:[0,52],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=80&amp;s=0b5ef7417d7ce749329b70f80a46478942963170&quot;],&quot;width&quot;:[0,80]}],[0,{&quot;height&quot;:[0,66],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=100&amp;s=54e4ec22850a5a1c24afa83e47276f0e0b84b901&quot;],&quot;width&quot;:[0,100]}],[0,{&quot;height&quot;:[0,131],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=200&amp;s=16a980425ce1b08669adabd346dd3fb5e0df011c&quot;],&quot;width&quot;:[0,200]}],[0,{&quot;height&quot;:[0,157],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=240&amp;s=5f6ca8e1f7c8d8ce51b74f44fd7ddbecec4a52da&quot;],&quot;width&quot;:[0,240]}],[0,{&quot;height&quot;:[0,315],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=480&amp;s=02e8f312aa8d0061769f541b58900d6a0505d09b&quot;],&quot;width&quot;:[0,480]}],[0,{&quot;height&quot;:[0,381],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=580&amp;s=4a9b46fad181c32b8a201b60524ce3b265e6295f&quot;],&quot;width&quot;:[0,580]}],[0,{&quot;height&quot;:[0,472],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=720&amp;s=0dacb759ba74fc969c8009f6663d76740e962da0&quot;],&quot;width&quot;:[0,720]}],[0,{&quot;height&quot;:[0,709],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=1080&amp;s=505816e86c9a39dcd8128247fdbaaa95c822e4b7&quot;],&quot;width&quot;:[0,1080]}],[0,{&quot;height&quot;:[0,945],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=1440&amp;s=8b6a2cdfd823618b5604dd83d82b1d53f8854070&quot;],&quot;width&quot;:[0,1440]}]]]}],&quot;layout&quot;:[0],&quot;marginBottom&quot;:[0],&quot;padded&quot;:[0],&quot;type&quot;:[0,&quot;news&quot;]}\" renderer-url=\"https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/client.B4ukvwq6.js\" ssr uid=\"Z1C6yzA\"><figure class=\"_figure_qp4xg_1 layout-component layout-normal\"><img alt=\"FRILUFTSMANN: Kjartan Børdal Hovgaard begynte å snuble på stiene i fjellet. Det var startet på svært alvorlig sykdom.   Foto: Privat\" class=\"_image_qp4xg_65 layout-component layout-normal\" data-fullscreen-sizes=\"(min-width: 1000px) 2000px, 2000vw\" data-track-element-type=\"Article image fullscreen\" data-track-name=\"ImageFullscreen\" decoding=\"async\" height=\"1049\" itemprop=\"image\" loading=\"lazy\" sizes=\"(min-width: 980px) 980px, 100vw\" src=\"https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=40&amp;s=c9f2430ea493e95b3cb80eda1471341aceb61827\" srcset=\"https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=40&amp;s=c9f2430ea493e95b3cb80eda1471341aceb61827 40w, https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=80&amp;s=0b5ef7417d7ce749329b70f80a46478942963170 80w, https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=100&amp;s=54e4ec22850a5a1c24afa83e47276f0e0b84b901 100w, https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=200&amp;s=16a980425ce1b08669adabd346dd3fb5e0df011c 200w, https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=240&amp;s=5f6ca8e1f7c8d8ce51b74f44fd7ddbecec4a52da 240w, https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=480&amp;s=02e8f312aa8d0061769f541b58900d6a0505d09b 480w, https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=580&amp;s=4a9b46fad181c32b8a201b60524ce3b265e6295f 580w, https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=720&amp;s=0dacb759ba74fc969c8009f6663d76740e962da0 720w, https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=1080&amp;s=505816e86c9a39dcd8128247fdbaaa95c822e4b7 1080w, https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=1440&amp;s=8b6a2cdfd823618b5604dd83d82b1d53f8854070 1440w\" style=\"object-position:0% 0%\" width=\"1599\"><figcaption class=\"text-sans-s _caption_qp4xg_10 layout-component layout-padded\">FRILUFTSMANN: Kjartan Børdal Hovgaard begynte å snuble på stiene i fjellet. Det var startet på svært alvorlig sykdom.   Foto: Privat</figcaption></figure><!--astro:end--></astro-island><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">Hans nærmeste familie reagerer sterkt på at pasienter med alvorlig eller livstruende sykdom ikke får tilgang til et lovende legemiddel, når det ikke finnes andre behandlingsalternativer. </p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">– Hvorfor bruker man ikke bestemmelsen som gir tidlig tilgang til nye medisiner? Og hvordan kan den samme medisinen være farlig utenfor en studiesetting, men trygg innenfor? Uten medisin dør Kjartan om kort tid, sier hans bror. </p><div class=\"advertory-vg-netboard-wrapper__article\"><div class=\"advertory-vg-netboard__article\" id=\"netboard_9\"></div></div><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">Advokat Max Henrik Jespersen ved Elden Advokatfirma, har på vegne av Kjartan Børdal Hovgaard klaget Direktoratet for medisinske produkter (DMP) inn for Helse- og omsorgsdepartementet.</p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\"><em class=\"_em_o9xde_35\">Vil du lese mer om helse og trening? VGs magasin Helse består av 100 sider om kroppen, formen og hodet – og kan kjøpes i <a class=\"_link_o9xde_39\" href=\"https://butikk.vg.no/products/vg-helse-januar-2026\">vår nettbutikk (fri frakt!)</a></em></p><astro-island await-children client=\"visible\" component-export=\"Image\" component-url=\"https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/Image.r_XTj6LO.js\" opts=\"{&quot;name&quot;:&quot;Image&quot;,&quot;value&quot;:true}\" prefix=\"r212\" 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renderer-url=\"https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/client.B4ukvwq6.js\" ssr uid=\"ZBzV7d\"><figure class=\"_figure_qp4xg_1 layout-component layout-normal\"><img alt=\"\" class=\"_image_qp4xg_65 layout-component layout-normal\" data-fullscreen-sizes=\"(min-width: 1000px) 2000px, 2000vw\" data-track-element-type=\"Article image fullscreen\" data-track-name=\"ImageFullscreen\" decoding=\"async\" height=\"1129\" itemprop=\"image\" loading=\"lazy\" sizes=\"(min-width: 980px) 980px, 100vw\" src=\"https://akamai.vgc.no/v2/images/25951537-7686-49dc-8ea8-404e1a212bd6?format=auto&amp;w=40&amp;s=7f527f11a53c27fe2361ad999448a621ec3e2215\" srcset=\"https://akamai.vgc.no/v2/images/25951537-7686-49dc-8ea8-404e1a212bd6?format=auto&amp;w=40&amp;s=7f527f11a53c27fe2361ad999448a621ec3e2215 40w, https://akamai.vgc.no/v2/images/25951537-7686-49dc-8ea8-404e1a212bd6?format=auto&amp;w=80&amp;s=17530fddc57b822472380866a76a341be3d103de 80w, https://akamai.vgc.no/v2/images/25951537-7686-49dc-8ea8-404e1a212bd6?format=auto&amp;w=100&amp;s=3e75473aca31a8652f4a5247631cb3ae7922b0d4 100w, https://akamai.vgc.no/v2/images/25951537-7686-49dc-8ea8-404e1a212bd6?format=auto&amp;w=200&amp;s=9ca8063c8b0f20fb6e3e24aa1b664b8b58bf396e 200w, https://akamai.vgc.no/v2/images/25951537-7686-49dc-8ea8-404e1a212bd6?format=auto&amp;w=240&amp;s=a39f569a2c1766edc289093ff7b003f68150c43a 240w, https://akamai.vgc.no/v2/images/25951537-7686-49dc-8ea8-404e1a212bd6?format=auto&amp;w=480&amp;s=06d35916177296c8ddc89a2c431fe9c1f92e3cfd 480w, https://akamai.vgc.no/v2/images/25951537-7686-49dc-8ea8-404e1a212bd6?format=auto&amp;w=580&amp;s=b93afffe66e1e6b336c5664e6f456f4fa041df9c 580w, https://akamai.vgc.no/v2/images/25951537-7686-49dc-8ea8-404e1a212bd6?format=auto&amp;w=720&amp;s=e8cfff5200969b92868ae37679b99b803b1241f5 720w\" style=\"object-position:0% 0%\" width=\"871\"></figure><!--astro:end--></astro-island>    </section>  <time class=\"text-sans-s _timestamp_ktvrt_1 _full_ktvrt_21 layout-component layout-normal layout-padded\" datetime=\"2026-01-25T08:57:55.000Z\" itemprop=\"datePublished\">Publisert: 25.01.26 kl. 09:57</time><time class=\"text-sans-s _timestamp_ktvrt_1 _full_ktvrt_21 layout-component layout-normal layout-padded\" datetime=\"2026-01-25T10:15:56.000Z\" itemprop=\"dateModified\">Oppdatert: 25.01.26 kl. 11:15</time>   <footer class=\"font-vg-sans label-secondary layout-component layout-normal layout-padded _tags_xigzw_18\" data-track-element-type=\"Tags\" data-track-id=\"tags\" data-track-impression=\"true\" data-track-name=\"Tags\" data-track-primary-position=\"1\" data-track-target-newsroom=\"vg\"><nav class=\"_nav_xigzw_3\"><ul class=\"_list_xigzw_2\"><li class=\"_item_xigzw_1\"><a class=\"_button_6bkpv_2 button-label-large _filled_6bkpv_106 _tag_xigzw_7\" data-track-id=\"tag:als\" data-track-name=\"ALS\" data-track-secondary-position=\"1\" href=\"/tag/als\">ALS</a></li><li class=\"_item_xigzw_1\"><a 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6.69995H10.6613L12.4244 11.4646Z\" fill=\"var(--icon-color, currentColor)\"></path><path d=\"M19.6103 4.33579L22 5.22004V6.22577L19.6103 7.11012L18.7259 9.50008H17.7203L16.8359 7.11012L14.5 6.24569V5.20012L16.8359 4.33579L17.7003 2.00003H18.7459L19.6103 4.33579Z\" fill=\"var(--icon-color, currentColor)\"></path></svg><a class=\"_link_1qdoz_11\" data-track-click-intent=\"Open\" data-track-element-type=\"Link\" data-track-name=\"ai-disclaimer\" href=\"https://www.vg.no/informasjon/redaksjonelle-avgjorelser/b7hmz5\">Informasjon om AI i VG-artikler</a></p></div>  <darkmode-onboarding class=\"_root_1uq6z_1\" hidden=\"false\"> <section class=\"_section_1uq6z_5 mb-s mt-s\" data-track-id=\"darkmode-onboarding\" data-track-impression data-track-name=\"Darkmode onboarding\"> <h3>Slå på mørk modus i artikler</h3> <div class=\"_container_ruod8_1\"><label class=\"background-secondary _checkbox_ruod8_7\"><div class=\"label-large label-primary _label_ruod8_38\"></div><input class=\"_toggle_ayo7d_1\" 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id=\"skyscraperright_1\"></div></div> <div class=\"advertory-vg-wallpaper-wrapper__article\"><div class=\"advertory-vg-wallpaper__article disable-cogwheel\" id=\"wallpaper\"></div></div>  <aside class=\"aside grouped\" data-astro-cid-jwirc66j role=\"complementary\"> <section class=\"_recirculation_1ppix_1\" data-nosnippet data-test-id=\"recirculation\" data-track-element-type=\"Recirculation\"><h2 class=\"title-serif-s\">Relaterte saker</h2><ul style=\"display: contents\"><li><astro-island await-children client=\"load\" component-export=\"Teaser\" component-url=\"https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/Teaser.DGVdH1e_.js\" opts=\"{&quot;name&quot;:&quot;Teaser&quot;,&quot;value&quot;:true}\" prefix=\"r223\" props=\"{&quot;schemaVersion&quot;:[0,5],&quot;schemaType&quot;:[0,&quot;article&quot;],&quot;id&quot;:[0,&quot;dRgBWz&quot;],&quot;changes&quot;:[0,{&quot;created&quot;:[0,&quot;2025-11-12T09:28:08Z&quot;],&quot;updated&quot;:[0,&quot;2025-12-02T09:48:02Z&quot;],&quot;firstPublished&quot;:[0,&quot;2025-12-01T21:51:26Z&quot;],&quot;published&quot;:[0,&quot;2025-12-01T21:51:26Z&quot;]}],&quot;section&quot;:[0,{&quot;id&quot;:[0,&quot;de434f6e-6c77-438e-aa59-639b118247f7&quot;],&quot;title&quot;:[0,&quot;Forbruker&quot;],&quot;enabled&quot;:[0,true]}],&quot;title&quot;:[0,{&quot;value&quot;:[0,&quot;Patrick (59) fikk sjokk da han tok slankemedisin: – Det var helt vilt&quot;]}],&quot;customProperties&quot;:[0,{&quot;vg_hasSpeechkitAudio&quot;:[0,true],&quot;developing&quot;:[0,false],&quot;presentation&quot;:[0,&quot;news&quot;],&quot;vg_blockSearchEngineIndexing&quot;:[0,false],&quot;articleSummary&quot;:[1,[[0,{&quot;items&quot;:[1,[[0,{&quot;value&quot;:[0,&quot;Patrick Rosengren 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   "source_updated_at" : "2026-01-25 10:15:56",
   "summary" : "Ny forskning gir ALS-pasienter håp. Men alvorlig syke Kirsten og Kjartan får nei til å prøve. ",
   "tags" : null,
   "title" : "Får ikke prøve banebrytende medisin: – Systemet er umenneskelig",
   "twitter_title" : null,
   "version" : 2
}
Version 1 2026-01-25 09:10:53
Får ikke prøve banebrytende medisin: – Systemet er umenneskelig
NEW
Author: Anne Stine Sæther Published: 2026-01-25 08:57:55 Updated: 2026-01-25 08:29:19 Category: Helse
📝 Summary

Ny forskning gir ALS-pasienter håp. Men alvorlig syke Kirsten og Kjartan får nei til å prøve.

📄 Full Content (9449 chars)

Den nye medisinen som nå skal testes ut på ALS-syke i Norge er resultatet av et samarbeid mellom Universitetssykehuset i Göteborg og Queen Elizabeth Hospital i Birmingham i England.

Den lovende medisinen har fått navnet ILB.

– For meg er det ingen risiko ved å prøve disse medisinene. Jeg skal uansett dø, sier Kirsten Jacobsen (63).

VG har snakket med to ALS-syke - Kirsten (63) og 52-år gamle Kjartan Børdal Hovgaard. Ingen av dem har fått lov å delta i prosjektet, som ledes av Oslo Universitetssykehus (OUS).

Begge har også søkt om tilgang til medisinen utenom studien og fått avslag, selv om de selv foreslår at de kan betale for behandlingen.

Det er ca 400 ALS-pasienter i Norge. I studien er det plass til 116 deltakere.

– De som ikke får være med, overlates til ingen behandling og en sikker død. Jeg mener det er uetisk. De burde fått medisinen via godkjenningsfritak, eller i en egen «forskningsarm.» Er dette forsvarlig, spør Hektor Hovgaard, Kjartans bror.

Slik foregår studien:

  • Halvparten av de 116 deltagerne som er med i OUS-prosjektet får medisinen ILB, mens den andre halvdelen får Riluzol, en eksisterende medisin.
  • Riluzol beskrives som et legemiddel med svært begrenset effekt. Pasientene som deltar i studiet, vet ikke selv hva de får.
  • Prosjektet samarbeider med sykehus over hele landet.

– Oppfyller ikke kriteriene for å delta

– Vi er veldig lei oss for pasienter vi må si nei til. En stor andel av ALS-pasientene oppfyller ikke kriteriene for å delta i studien. De er kommet for langt i sykdomsforløpet. For å delta må de ha funksjoner som kan måles, sier prosjektleder, overlege Angelina Hatlø Maniaol.

Hun er nevrolog ved Oslo universitetssykehus.

– Vi har et håp som alle andre. Det er å finne en ny behandling, en bremsemedisin som kan forlenge livet. Pasientene blir ikke kurert. Sannsynligheten for det er veldig liten. Det beste utfallet er at vi kan bevise at ILB virker og at det kommer flere studier i etterkant av denne som tester nye produkter mot ALS.

Prosjektleder Angelina Hatlø Maniaol, nevrolog og overlege ved OUS

– Hun står uten behandlingsalternativer

Overlege og spesialist i nevrologi, Abdullah Mohammud, søkte i oktober i fjor på vegne av Kirsten Jacobsen, om tilgang til den nye medisinen utenom OUS-studien, et såkalt godkjenningsfritak.

Legen er tilknyttet Oslo universitetssykehus, Smerteklinikken og Colosseumklinikken.

– Formålet med søknaden er å sikre pasienten tilgang til en potensielt symptomlindrende og livsforlengende behandling, som kan bidra til å bremse sykdomsprogresjon og bevare funksjonsevnen, skrev han i søknaden.

– Hun står uten behandlingsalternativer. Pasienten er kjent med og aksepterer at det for medisiner som er under utvikling, kan oppstå tidligere ukjente bivirkninger, også av alvorlig grad eller fatale.

For Kirsten ville den nye medisinen gitt håp. Men hun fikk avslag.

– Vi har mottatt tre søknader om godkjenningsfritak for ILB de siste månedene. To av sakene er fortsatt under behandling. Fordi sakene ligner på hverandre, ønsker vi ikke å uttale oss nå, sier pressevakten i Direktoratet for Medisinske Produkter til VG.

Medisinen som nå skal testes ut i Norge, er tidligere testet i et svensk/britisk prosjekt. Her er det rapportert om funksjonsforbedring hos flere pasienter og ingen alvorlige bivirkninger av den nyutviklede medisinen.

Blant ALS-syke har erfaringene til svenske Erik, en pasient i 30-årene, tent et håp.

Han har selv fortalt i svenske medier at han ble tydelig bedre etter å ha deltatt i prosjektet.

VG får opplyst at Erik er den eneste pasienten i studiet som fortsatt lever.

Beinet sviktet

Kirsten Jacobsens første symptomer på alvorlig sykdom, var et bein som svikt et.

– Etter hvert greide jeg ikke å gå lenger, sier hun.

– Det utviklet seg gradvis. Det er det som er denne sykdommen. Den er grusom. Du har gradvise tap av muskulatur hver dag. Det er nådeløst og det går sakte, sier ektemannen Tallak Thorleifsson.

Ved påsketider i 2023 kom diagnosen.

Kirsten hadde ALS.

Nesten tre år senere sitter hun i rullestolen hjemme i Oslo. Pustehjelp er blitt en del av hverdagen.

– Et siste håp

ALS-diagnosen er tung for hele familien. Håpet var et positivt svar på søknaden om å få bruke ILB.

– Det oppleves dypt urettferdig at moren vår nektes et siste forsøk, selv om hun tar både kostnad og risiko innenfor en ordning som er ment å gi håp til alvorlig syke uten behandlingsalternativer, sier datteren Tilde Thorleifsson.

– Et nei i en slik situasjon er ikke nøytralt – det er et valg om å beskytte systemet fremfor å vise medmenneskelighet.

Hun og broren Mandius har sett mamma bli stadig mer preget av sykdommen.

– Når alternativet er en sikker død, opplever vi det som etisk uforståelig at frykten for å gjøre feil veier tyngre enn viljen til å gi håp, sier datteren.

– Hvis behandlingen senere viser seg å ha effekt, vil det være tungt å leve med at hun ble nektet denne muligheten mens tiden fortsatt fantes. For meg som datter er dette først og fremst et etisk spørsmål om hvordan et system kan nekte døende et siste håp.

Forsker: – Stanset sykdomsutviklingen

Ann Logan, professor i regenerativ medisin ved University of Warwick i England, er ansvarlig for den svensk/britiske studien.

Til tidsskriftet Neurologi i Sverige, sier hun:

– Ingen andre ALS-legemidler har vist tilsvarende sykdomsmodifiserende effekter.

Hun mener ILB tilhører neste generasjons legemidler som kan beskytte og reparere sykt og skadet nerve- og muskelvev.

– Dette innebærer at det åpnes nye muligheter for å utvikle en helt ny klasse av neuroregenerative legemidler. Det vi ser kan være et paradigmeskifte ved behandling av ALS. Jeg forsvarer selvsagt arbeidet mitt med ILB fullt ut, og står bak alle uttalelser og sitater som er tillagt meg, sier professor Logan til VG.

Professor Ann Logan er forsker ved University of Warwick i England

Svenske «Neurologisk Tidskrift» skriver at prosjekt hun ledet kan ha funnet en metode som påvirker mekanismer som har betydning for utviklingen av ALS og andre nevrodegenerative sykdommer.

DMP: – Ikke godkjent og ikke forsvarlig

Direktoratet for medisinske produkter (DMP) slår fast at bruken av legemiddelet ILB ikke kan anses som forsvarlig.

DMP viser til at medisinen ikke er godkjent i noe land og kun er testet i små, tidlige fase 1- og 2-studier, uten dokumentasjon på klinisk effekt.

– Systemet er umenneskelig. De vil beskytte seg selv. Men de må ikke ta fra oss håpet, sier Tallak, Kirstens ektemann og nærmeste støtte.

  • Oslo universitetssykehus opplyser på forskningsprosjektets hjemmeside at hos ALS-pasienter har sikkerheten og den foreløpige effekten av ILB tidligere blitt undersøkt i to studier med til sammen 24 deltagere.
  • I begge studiene ble det rapportert at pasientgruppen*tålte medisinen godt*. De fleste bivirkningene var milde eller moderate, de var kortvarige og trengte liten eller ingen behandling.
  • OUS skriver at h*ensikten med prosjektet er å måle effekten og sikkerheten av ILB*sammenlignet med den nåværende standardbehandlingen, Riluzol.

– Det finnes hverken vurdering av nytte- eller risikoprofil, preparatomtale eller kvalitetssikret informasjon om dosering og bivirkninger. Usikkerheten rundt sikkerhet og effekt vurderes som betydelig. Selv ved alvorlig sykdom som ALS kan ikke manglende behandlingsalternativer oppveie kravet til dokumentasjon, skriver Direktoratet for Medisinske Produkter til VG.

Direktoratet understreker at forsvarlighetskravet er absolutt og ikke kan fravikes.

– Vilkårene for godkjenningsfritak er ikke oppfylt, skriver overlege Ingrid Aas i Direktoratet for medisinske produkter til VG.

Avslag prøves i svensk rett

– Gis ingen sjanse

Kjartan Børdal Hovgaard (52) er alvorlig ALS-syk. Via lege har også han søkt om å få bruke ILB. Kjartan har vært selvstendig næringsdrivende innen fiskeoppdrett hjemme i Sogndal.

Han er samboer og tenåringspappa.

Friluftsmannen var vant til å ferdes til fjells. I 2017 begynte han å snuble på stiene.

En venn døde av ALS i 2019. Kjartan var kjent med sykdomstegnene.

ALS rammet hardt.

– ILB er godkjent for prosjektet ved OUS. Men det godkjennes ikke for pasienter som er så syke at de har kort tid igjen hvis de ikke får medisinen. Det er blankt nei. I Norge er det mange ALS-pasienter som ikke gis en sjanse til å overleve, sier Hektor Hovgaard, Kjartans bror.

Hans nærmeste familie reagerer sterkt på at pasienter med alvorlig eller livstruende sykdom ikke får tilgang til et lovende legemiddel, når det ikke finnes andre behandlingsalternativer.

– Hvorfor bruker man ikke bestemmelsen som gir tidlig tilgang til nye medisiner? Og hvordan kan den samme medisinen være farlig utenfor en studiesetting, men trygg innenfor? Uten medisin dør Kjartan om kort tid, sier hans bror.

Advokat Max Henrik Jespersen ved Elden Advokatfirma, har på vegne av Kjartan Børdal Hovgaard klaget Direktoratet for medisinske produkter (DMP) inn for Helse- og omsorgsdepartementet.

Vil du lese mer om helse og trening? VGs magasin Helse består av 100 sider om kroppen, formen og hodet – og kan kjøpes i vår nettbutikk (fri frakt!)

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Får ikke prøve banebrytende medisin: – Systemet er umenneskelig
URL: https://akamai.vgc.no/v2/images/7db5dd3a-a54c-4b98-83ad-a82730f1e3b2?format=auto&w=1080&s=337a21436b6ca87d2c6fea926657eadd2892ead7
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Keywords: vg:helseoglivet, ALS, Sykdom, Diagnose
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   "content" : "Den nye medisinen som nå skal testes ut på ALS\\-syke i Norge er resultatet av et samarbeid mellom Universitetssykehuset i Göteborg og Queen Elizabeth Hospital i Birmingham i England.\n\n**Den lovende medisinen har fått navnet ILB.**\n\n– For meg er det ingen risiko ved å prøve disse medisinene. Jeg skal uansett dø, sier Kirsten Jacobsen \\(63\\).\n\n**VG har snakket med to ALS\\-syke \\- Kirsten \\(63\\) og 52\\-år gamle Kjartan Børdal Hovgaard. Ingen av dem har fått lov å delta i prosjektet, som ledes av Oslo Universitetssykehus \\(OUS\\).**\n\nBegge har også søkt om tilgang til medisinen utenom studien og fått avslag, selv om de selv foreslår at de kan betale for behandlingen.\n\nDet er ca 400 ALS\\-pasienter i Norge. I studien er det plass til 116 deltakere.\n\n– De som ikke får være med, overlates til ingen behandling og en sikker død. Jeg mener det er uetisk. De burde fått medisinen via godkjenningsfritak, eller i en egen «forskningsarm.» Er dette forsvarlig, spør Hektor Hovgaard, Kjartans bror.\n\n## Slik foregår studien:\n\n- Halvparten av de 116 deltagerne som er med i OUS\\-prosjektet får medisinen ILB, mens den andre halvdelen får Riluzol, en eksisterende medisin.\n- Riluzol beskrives som et legemiddel med svært begrenset effekt. Pasientene som deltar i studiet, vet ikke selv hva de får.\n- Prosjektet samarbeider med sykehus over hele landet.\n\n## – Oppfyller ikke kriteriene for å delta\n\n– Vi er veldig lei oss for pasienter vi må si nei til. En stor andel av ALS\\-pasientene oppfyller ikke kriteriene for å delta i studien. De er kommet for langt i sykdomsforløpet. For å delta må de ha funksjoner som kan måles, sier prosjektleder, overlege Angelina Hatlø Maniaol.\n\nHun er nevrolog ved Oslo universitetssykehus.\n\n– Vi har et håp som alle andre. Det er å finne en ny behandling, en bremsemedisin som kan forlenge livet. Pasientene blir ikke kurert. Sannsynligheten for det er veldig liten. Det beste utfallet er at vi kan bevise at ILB virker og at det kommer flere studier i etterkant av denne som tester nye produkter mot ALS.\n\nProsjektleder Angelina Hatlø Maniaol, nevrolog og overlege ved OUS\n\n## – Hun står uten behandlingsalternativer\n\nOverlege og spesialist i nevrologi, Abdullah Mohammud, søkte i oktober i fjor på vegne av Kirsten Jacobsen, om tilgang til den nye medisinen utenom OUS\\-studien, et såkalt godkjenningsfritak.\n\nLegen er tilknyttet Oslo universitetssykehus, Smerteklinikken og Colosseumklinikken.\n\n– Formålet med søknaden er å sikre pasienten tilgang til en potensielt symptomlindrende og livsforlengende behandling, som kan bidra til å bremse sykdomsprogresjon og bevare funksjonsevnen, skrev han i søknaden.\n\n**– Hun står uten behandlingsalternativer. Pasienten er kjent med og aksepterer at det for medisiner som er under utvikling, kan oppstå tidligere ukjente bivirkninger, også av alvorlig grad eller fatale.**\n\nFor Kirsten ville den nye medisinen gitt håp. Men hun fikk avslag.\n\n– Vi har mottatt tre søknader om godkjenningsfritak for ILB de siste månedene. To av sakene er fortsatt under behandling. Fordi sakene ligner på hverandre, ønsker vi ikke å uttale oss nå, sier pressevakten i Direktoratet for Medisinske Produkter til VG.\n\nMedisinen som nå skal testes ut i Norge, er tidligere testet i et svensk/britisk prosjekt. Her er det rapportert om funksjonsforbedring hos flere pasienter og ingen alvorlige bivirkninger av den nyutviklede medisinen.\n\nBlant ALS\\-syke har erfaringene til svenske Erik, en pasient i 30\\-årene, tent et håp.\n\nHan har selv fortalt i svenske medier at han ble tydelig bedre etter å ha deltatt i prosjektet.\n\nVG får opplyst at Erik er den eneste pasienten i studiet som fortsatt lever.\n\n## Beinet sviktet\n\nKirsten Jacobsens første symptomer på alvorlig sykdom, var et bein som svikt et.\n\n– Etter hvert greide jeg ikke å gå lenger, sier hun.\n\n– Det utviklet seg gradvis. Det er det som er denne sykdommen. Den er grusom. Du har gradvise tap av muskulatur hver dag. Det er nådeløst og det går sakte, sier ektemannen Tallak Thorleifsson.\n\nVed påsketider i 2023 kom diagnosen.\n\n**Kirsten hadde ALS.**\n\nNesten tre år senere sitter hun i rullestolen hjemme i Oslo. Pustehjelp er blitt en del av hverdagen.\n\n## – Et siste håp\n\nALS\\-diagnosen er tung for hele familien. Håpet var et positivt svar på søknaden om å få bruke ILB.\n\n– Det oppleves dypt urettferdig at moren vår nektes et siste forsøk, selv om hun tar både kostnad og risiko innenfor en ordning som er ment å gi håp til alvorlig syke uten behandlingsalternativer, sier datteren Tilde Thorleifsson.\n\n**– Et nei i en slik situasjon er ikke nøytralt – det er et valg om å beskytte systemet fremfor å vise medmenneskelighet.**\n\nHun og broren Mandius har sett mamma bli stadig mer preget av sykdommen.\n\n– Når alternativet er en sikker død, opplever vi det som etisk uforståelig at frykten for å gjøre feil veier tyngre enn viljen til å gi håp, sier datteren.\n\n– Hvis behandlingen senere viser seg å ha effekt, vil det være tungt å leve med at hun ble nektet denne muligheten mens tiden fortsatt fantes. For meg som datter er dette først og fremst et etisk spørsmål om hvordan et system kan nekte døende et siste håp.\n\n## Forsker: – Stanset sykdomsutviklingen\n\nAnn Logan, professor i regenerativ medisin ved University of Warwick i England, er ansvarlig for den svensk/britiske studien.\n\n[Til tidsskriftet Neurologi i Sverige, sier hun](https://www.neurologiisverige.se/wp-content/uploads/2025/02/Neurologi-i-Sverige-Nr-1-ALS-1.pdf):\n\n– Ingen andre ALS\\-legemidler har vist tilsvarende sykdomsmodifiserende effekter.\n\nHun mener ILB tilhører neste generasjons legemidler som kan beskytte og reparere sykt og skadet nerve\\- og muskelvev.\n\n– Dette innebærer at det åpnes nye muligheter for å utvikle en helt ny klasse av neuroregenerative legemidler. Det vi ser kan være et paradigmeskifte ved behandling av ALS. Jeg forsvarer selvsagt arbeidet mitt med ILB fullt ut, og står bak alle uttalelser og sitater som er tillagt meg, sier professor Logan til VG.\n\nProfessor Ann Logan er forsker ved University of Warwick i England\n\nSvenske [«Neurologisk Tidskrift»](https://neurologisktidskrift.se/sjukdomar/als/92-ny-metod-har-potentialen-att-bli-forsta-sjukdomsmodifierande-behandling-for-als.html) skriver at prosjekt hun ledet kan ha funnet en metode som påvirker mekanismer som har betydning for utviklingen av ALS og andre nevrodegenerative sykdommer.\n\n## DMP: – Ikke godkjent og ikke forsvarlig\n\nDirektoratet for medisinske produkter \\(DMP\\) slår fast at bruken av legemiddelet ILB ikke kan anses som forsvarlig.\n\nDMP viser til at medisinen ikke er godkjent i noe land og kun er testet i små, tidlige fase 1\\- og 2\\-studier, uten dokumentasjon på klinisk effekt.\n\n**– Systemet er umenneskelig. De vil beskytte seg selv. Men de må ikke ta fra oss håpet, sier Tallak, Kirstens ektemann og nærmeste støtte.**\n\n- Oslo universitetssykehus opplyser på forskningsprosjektets hjemmeside at hos ALS\\-pasienter har **sikkerheten og den foreløpige effekten av ILB tidligere blitt undersøkt i to studier med til sammen 24 deltagere.**\n- I begge studiene ble det rapportert at pasientgruppen**tålte medisinen godt**. De fleste **bivirkningene var milde eller moderate,** de var kortvarige og trengte liten eller ingen behandling.\n- OUS skriver at h**ensikten med prosjektet er å måle effekten og sikkerheten av ILB**sammenlignet med den nåværende standardbehandlingen, Riluzol.\n\n– Det finnes hverken vurdering av nytte\\- eller risikoprofil, preparatomtale eller kvalitetssikret informasjon om dosering og bivirkninger. Usikkerheten rundt sikkerhet og effekt vurderes som betydelig. Selv ved alvorlig sykdom som ALS kan ikke manglende behandlingsalternativer oppveie kravet til dokumentasjon, skriver Direktoratet for Medisinske Produkter til VG.\n\n**Direktoratet understreker at forsvarlighetskravet er absolutt og ikke kan fravikes.**\n\n– Vilkårene for godkjenningsfritak er ikke oppfylt, skriver overlege Ingrid Aas i Direktoratet for medisinske produkter til VG.\n\n## Avslag prøves i svensk rett\n\n## – Gis ingen sjanse\n\nKjartan Børdal Hovgaard \\(52\\) er alvorlig ALS\\-syk. Via lege har også han søkt om å få bruke ILB. Kjartan har vært selvstendig næringsdrivende innen fiskeoppdrett hjemme i Sogndal.\n\nHan er samboer og tenåringspappa.\n\nFriluftsmannen var vant til å ferdes til fjells. I 2017 begynte han å snuble på stiene.\n\nEn venn døde av ALS i 2019. Kjartan var kjent med sykdomstegnene.\n\nALS rammet hardt.\n\n**– ILB er godkjent for prosjektet ved OUS. Men det godkjennes ikke for pasienter som er så syke at de har kort tid igjen hvis de ikke får medisinen. Det er blankt nei. I Norge er det mange ALS\\-pasienter som ikke gis en sjanse til å overleve, sier Hektor Hovgaard, Kjartans bror.**\n\nHans nærmeste familie reagerer sterkt på at pasienter med alvorlig eller livstruende sykdom ikke får tilgang til et lovende legemiddel, når det ikke finnes andre behandlingsalternativer.\n\n– Hvorfor bruker man ikke bestemmelsen som gir tidlig tilgang til nye medisiner? Og hvordan kan den samme medisinen være farlig utenfor en studiesetting, men trygg innenfor? Uten medisin dør Kjartan om kort tid, sier hans bror.\n\nAdvokat Max Henrik Jespersen ved Elden Advokatfirma, har på vegne av Kjartan Børdal Hovgaard klaget Direktoratet for medisinske produkter \\(DMP\\) inn for Helse\\- og omsorgsdepartementet.\n\n*Vil du lese mer om helse og trening? VGs magasin Helse består av 100 sider om kroppen, formen og hodet – og kan kjøpes i vår nettbutikk \\(fri frakt!\\)*"
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<main class="article-main" data-astro-cid-jwirc66j data-horseshoe="true" data-topbanner="false" data-topboard="true" id="application"> <div class="advertory-vg-skyscraperleft_1-wrapper__article"><div class="advertory-vg-skyscraperleft_1__article" id="skyscraperleft_1"></div></div><div class="advertory-vg-topboard-wrapper__article"><div class="advertory-vg-topboard__article" id="topboard"></div></div><div data-placement-format="sponsorstripe"><div id="sponsorstripe"></div></div>  <article class="article default" data-astro-cid-jwirc66j> <header class="article-intro" style="display: contents"> <h1 class="_title_kfomj_1 _wide_kfomj_54 _small_kfomj_32 title-serif-m layout-component layout-wide layout-padded" first-child="false"><span class="_text_kfomj_58">Får ikke prøve banebrytende medisin: –⁠ Systemet er umenneskelig</span></h1><p class="_lead_o9xde_2 _lead_xtcu6_50 layout-component text-serif-m layout-normal text-serif-l layout-component layout-wide layout-padded _wide_17hqh_1 layout-padded">Ny forskning gir ALS-pasienter håp. 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_dateline_ntbth_31">Rapporterer fra Oslo</span></section> <friendly-timestamp data-options="{&quot;showUpdated&quot;:true}" style="display:contents"><time class="text-sans-s _timestamp_ktvrt_1 _friendly_ktvrt_17 layout-component layout-normal layout-padded" datetime="2026-01-25T08:57:55.000Z"><span data-nosnippet="true">Oppdatert søndag 25. januar kl. 09:57</span></time></friendly-timestamp> <div class="advertory-vg-netboard-wrapper__article"><div class="advertory-vg-netboard__article" id="netboard_1"></div></div> </header>  <section class="article-body" itemprop="articleBody" style="display: contents"> <div class="layout-component layout-padded layout-normal _tts_1njly_1" data-track-id="tts:35336" data-track-impression data-track-name="Får ikke prøve banebrytende medisin: – Systemet er umenneskelig" data-track-target-newsroom="vgtts"><astro-island await-children client="load" component-export="TTSPlayer" component-url="https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/video.ayTqLdUa.js" opts="{&quot;name&quot;:&quot;TTSPlayer&quot;,&quot;value&quot;:true}" prefix="r216" props="{&quot;assetId&quot;:[0,35336],&quot;vendor&quot;:[0,&quot;vgtts&quot;],&quot;isApp&quot;:[0,false]}" renderer-url="https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/client.B4ukvwq6.js" ssr uid="1JodWp"><div class="_svpContainer_1nwbk_1"><div id="svp-video-35336-«r216R0»"></div></div><div class="_perspective_1nwbk_11"><div class="_controls_1nwbk_16"><div class="_initial_1nwbk_33"><button aria-disabled="true" aria-label="Laster inn lytt til saken avspiller" class="_button_6bkpv_2 button-label-large _filled_6bkpv_106 _play_10x2h_9 _button_10x2h_1" data-track-click-intent="Attempt" data-track-element-type="Play Button Disabled" role="button" type="button"><svg aria-label="Play" fill="none" height="24px" role="graphics-symbol" style="flex-shrink:0;height:var(--icon-size, var(--space-l));width:auto" 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syke Kirsten og Kjartan får ikke delta.&quot;],&quot;markup&quot;:[1,[]]}],[0,{&quot;value&quot;:[0,&quot;Medisinen ILB viser lovende resultater i Sverige og England, men er ikke godkjent for bruk utenfor studieoppsettet.&quot;],&quot;markup&quot;:[1,[]]}],[0,{&quot;value&quot;:[0,&quot;Familien til pasientene uttrykker frustrasjon over avslagene, som de mener tar fra dem et siste håp.&quot;],&quot;markup&quot;:[1,[]]}]]],&quot;blockType&quot;:[0,&quot;list:unordered&quot;]}]]],&quot;type&quot;:[0,&quot;news&quot;],&quot;introType&quot;:[0]}" renderer-url="https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/client.B4ukvwq6.js" ssr uid="ZhTKpj"><div class="_summary_64s2r_1 layout-component layout-normal layout-padded" data-theme="accent"><track-element data-track-element-type="Article Summary" data-track-id="article-summary" data-track-impression="" data-track-name="Article Summary"><section aria-expanded="false" aria-label="Utvid" class="_box_1mfx9_1 font-vg-sans layout-component layout-normal _box_64s2r_31" id="«r21R0»" role="region" style="max-height:var(--height)"><div class="_titleContainer_64s2r_44"><h2 class="title-serif-s _title_64s2r_44">Kortversjonen</h2><button aria-label="Vis informasjon" class="_button_6bkpv_2 button-label-large _button_64s2r_20" data-track-id="article-summary-disclaimer" data-track-name="Article Summary Disclaimer" role="button" type="button"><svg aria-label="Ai" fill="none" height="24px" role="graphics-symbol" style="flex-shrink:0;height:var(--icon-size, var(--space-l));width:auto" viewbox="0 0 24 24" width="24px" xmlns="http://www.w3.org/2000/svg"><path d="M12.4244 11.4646L17.3 13.2687V15.3201L12.4244 17.1242L10.6202 22H8.56907L6.76485 17.1242L2 15.361V13.2278L6.76485 11.4646L8.52796 6.69995H10.6613L12.4244 11.4646Z" fill="var(--icon-color, currentColor)"></path><path d="M19.6103 4.33579L22 5.22004V6.22577L19.6103 7.11012L18.7259 9.50008H17.7203L16.8359 7.11012L14.5 6.24569V5.20012L16.8359 4.33579L17.7003 2.00003H18.7459L19.6103 4.33579Z" fill="var(--icon-color, currentColor)"></path></svg></button></div><div class="_disclaimer_64s2r_50" hidden=""><span class="_text_64s2r_64" data-nosnippet="true">Oppsummeringen er laget med kunstig intelligens og<!-- --> <a href="https://www.vg.no/informasjon/redaksjonelle-avgjorelser/183">kvalitetssikret av VGs journalister.</a></span></div><ul class="_list_o9xde_3 _list_64s2r_85 _unordered_o9xde_106 text-sans-m"><li class="_item_o9xde_30">En lovende ny medisin for ALS testes i Norge, men alvorlig syke Kirsten og Kjartan får ikke delta.</li><li class="_item_o9xde_30">Medisinen ILB viser lovende resultater i Sverige og England, men er ikke godkjent for bruk utenfor studieoppsettet.</li><li class="_item_o9xde_30">Familien til pasientene uttrykker frustrasjon over avslagene, som de mener tar fra dem et siste håp.</li></ul><button aria-controls="«r21R0»" class="_button_6bkpv_2 button-label-large _hug_6bkpv_81 _filled_6bkpv_106 _button_1mfx9_76" role="button" type="button"><span>Vis <!-- -->mer</span></button></section></track-element></div><!--astro:end--></astro-island> <p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">Den nye medisinen som nå skal testes ut på ALS-syke i Norge er resultatet av et samarbeid mellom Universitetssykehuset i Göteborg og Queen Elizabeth Hospital i Birmingham i England. </p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded"><strong class="_strong_o9xde_25">Den lovende medisinen har fått navnet ILB.</strong></p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">– For meg er det ingen risiko ved å prøve disse medisinene. Jeg skal uansett dø, sier Kirsten Jacobsen (63). </p><astro-island await-children client="visible" component-export="Image" component-url="https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/Image.r_XTj6LO.js" opts="{&quot;name&quot;:&quot;Image&quot;,&quot;value&quot;:true}" prefix="r131" props="{&quot;alt&quot;:[0],&quot;caption&quot;:[0,&quot;Foto: Line Møller / 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renderer-url="https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/client.B4ukvwq6.js" ssr uid="1itm9w"><figure class="_figure_qp4xg_1 layout-component layout-normal"><img alt="Foto: Line Møller / VG" class="_image_qp4xg_65 layout-component layout-normal" data-fullscreen-sizes="(min-width: 1000px) 2000px, 2000vw" data-track-element-type="Article image fullscreen" data-track-name="ImageFullscreen" decoding="async" height="4034" itemprop="image" loading="lazy" sizes="(min-width: 980px) 980px, 100vw" src="https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=40&amp;s=6bd5910081f204a54d43b6c62773beacc8853bf8" srcset="https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=40&amp;s=6bd5910081f204a54d43b6c62773beacc8853bf8 40w, https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=80&amp;s=729ed332ee0bb060f1fe37b6dd31595fa27acc08 80w, https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=100&amp;s=3ff7b70012dfcda2608eb83100f2bbe586269e70 100w, https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=200&amp;s=0bf255d9fce94e47d2f2f68106f99add2b62667d 200w, https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=240&amp;s=27a6954c2c7c304cf5ecb9a60ef81c6be7bc3cfb 240w, https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=480&amp;s=f7faeb5a071bd7f215b3ce7e94f5536b15618af0 480w, https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=580&amp;s=668f067b66bc64c1dc42ab78b651f6c66f3cd470 580w, https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=720&amp;s=90bbefa4a74dbbcf2a86d2d2d5a04a8aa203a3b2 720w, https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=1080&amp;s=6e51e25ddd8e5b761ba9b938d939f4b90c974454 1080w, https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=1440&amp;s=ab5de627680ff5190c19e7f2217e7cc868e1dd73 1440w, https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=2160&amp;s=52be0d9919843bca11ded7e78f48ffdc56898cbc 2160w" style="object-position:0% 0%" width="5379"><figcaption class="text-sans-s _caption_qp4xg_10 layout-component layout-padded">Foto: Line Møller / VG</figcaption></figure><!--astro:end--></astro-island><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded"><strong class="_strong_o9xde_25">VG har snakket med to ALS-syke - Kirsten (63) og 52-år gamle Kjartan Børdal Hovgaard. Ingen av dem har fått lov å delta i prosjektet, som ledes av Oslo Universitetssykehus (OUS). </strong></p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">Begge har også søkt om tilgang til medisinen utenom studien og fått avslag, selv om de selv foreslår at de kan betale for behandlingen.</p><div class="advertory-vg-netboard-wrapper__article"><div class="advertory-vg-netboard__article" id="netboard_2"></div></div><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">Det er ca 400 ALS-pasienter i Norge. I studien er det plass til 116 deltakere. </p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">– De som ikke får være med, overlates til ingen behandling og en sikker død. Jeg mener det er uetisk. De burde fått medisinen via <abbr class="_explanation_o9xde_140" tabindex="0" title=" En tillatelse som kan gis for å bruke en medisin som ikke er godkjent i landet, ofte i tilfeller der det ikke finnes andre behandlingsalternativer.">godkjenningsfritak<span aria-hidden="true" class="text-sans-s _title_o9xde_151" role="presentation"><span class="text-serif-l _word_o9xde_156">godkjenningsfritak</span> En tillatelse som kan gis for å bruke en medisin som ikke er godkjent i landet, ofte i tilfeller der det ikke finnes andre behandlingsalternativer.</span></abbr>, eller i en egen «forskningsarm.» Er dette forsvarlig, spør Hektor Hovgaard, Kjartans bror.</p><astro-island await-children client="visible" component-export="Image" component-url="https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/Image.r_XTj6LO.js" opts="{&quot;name&quot;:&quot;Image&quot;,&quot;value&quot;:true}" prefix="r137" props="{&quot;alt&quot;:[0],&quot;caption&quot;:[0,&quot;Kjartan Børdal Hovgaard (52).  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Foto: Privat" class="_image_qp4xg_65 layout-component layout-normal" data-fullscreen-sizes="(min-width: 1000px) 2000px, 2000vw" data-track-element-type="Article image fullscreen" data-track-name="ImageFullscreen" decoding="async" height="1654" itemprop="image" loading="lazy" sizes="(min-width: 980px) 980px, 100vw" src="https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=40&amp;s=c505a7a8bb108b13168af5ebf699ced3598b78bb" srcset="https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=40&amp;s=c505a7a8bb108b13168af5ebf699ced3598b78bb 40w, https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=80&amp;s=dcbf6113039f147fc5a83cf9ae582c8a3e327152 80w, https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=100&amp;s=2c8bcbf7c89f0d7742e57ff08212adb170226f59 100w, https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=200&amp;s=bc3282d6f76d3fc1148a36961c7c02551ddcc1d3 200w, https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=240&amp;s=f9812d3f162be4003e24d8bc7dcffe20cd3a237d 240w, https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=480&amp;s=f10b17b5aca1854797e270c41582324a4ae16829 480w, https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=580&amp;s=c1f711210f5386815095e8c454b4996bd8f2bda1 580w, https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=720&amp;s=5f2e3856955e5866e24e5a700e0b5e8196eba724 720w, https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=1080&amp;s=535d03c1ae0d54ccfad83c77d88b60eb784fd98a 1080w, https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=1440&amp;s=965c40d041abb4b7656214f79c9703baed151466 1440w, https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=2160&amp;s=312c3e3405bb07940ac0d59ae86bb9189d86f57e 2160w" style="object-position:0% 0%" width="2204"><figcaption class="text-sans-s _caption_qp4xg_10 layout-component layout-padded">Kjartan Børdal Hovgaard (52).  Foto: Privat</figcaption></figure><!--astro:end--></astro-island><h2 class="_heading_o9xde_1 _heading_xtcu6_1 layout-component text-serif-m layout-normal text-serif-m layout-padded"><strong class="_strong_o9xde_25">Slik foregår studien: </strong></h2><ul class="_list_o9xde_3 _list_xtcu6_9 _unordered_o9xde_106 layout-component text-serif-m layout-normal text-serif-m layout-padded"><li class="_item_o9xde_30">Halvparten av de 116 deltagerne som er med i OUS-prosjektet får medisinen ILB, mens den andre halvdelen får Riluzol, en eksisterende medisin. </li><li class="_item_o9xde_30">Riluzol beskrives som et legemiddel med svært begrenset effekt. Pasientene som deltar i studiet, vet ikke selv hva de får. </li><li class="_item_o9xde_30">Prosjektet samarbeider med <abbr class="_explanation_o9xde_140" tabindex="0" title="Samarbeid med
Akershus universitetssykehus
Helse Bergen
Helse Møre og Romsdal
Helse Stavanger
Nordlandssykehuset
Sørlandet sykehus
St. Olavs hospital
Sykehuset i Vestfold
Sykehuset Innlandet
Sykehuset Telemark
Universitetssykehuset Nord-Norge
Vestre viken">sykehus over hele landet<span aria-hidden="true" class="text-sans-s _title_o9xde_151" role="presentation"><span class="text-serif-l _word_o9xde_156">sykehus over hele landet</span>Samarbeid med
Akershus universitetssykehus
Helse Bergen
Helse Møre og Romsdal
Helse Stavanger
Nordlandssykehuset
Sørlandet sykehus
St. Olavs hospital
Sykehuset i Vestfold
Sykehuset Innlandet
Sykehuset Telemark
Universitetssykehuset Nord-Norge
Vestre viken</span></abbr>.</li></ul><h2 class="_heading_o9xde_1 _heading_xtcu6_1 layout-component text-serif-m layout-normal text-serif-m layout-padded">– Oppfyller ikke kriteriene for å delta</h2><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">– Vi er veldig lei oss for pasienter vi må si nei til. En stor andel av ALS-pasientene oppfyller ikke kriteriene for å delta i studien. De er kommet for langt i sykdomsforløpet. For å delta må de ha funksjoner som kan måles, sier prosjektleder, overlege Angelina Hatlø Maniaol. </p><div class="advertory-vg-netboard-wrapper__article"><div class="advertory-vg-netboard__article" id="netboard_3"></div></div><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">Hun er <abbr class="_explanation_o9xde_140" tabindex="0" title=" En lege som er spesialist i sykdommer og lidelser i nervesystemet, inkludert hjernen, ryggmargen og nerver.">nevrolog <span aria-hidden="true" class="text-sans-s _title_o9xde_151" role="presentation"><span class="text-serif-l _word_o9xde_156">nevrolog </span> En lege som er spesialist i sykdommer og lidelser i nervesystemet, inkludert hjernen, ryggmargen og nerver.</span></abbr>ved Oslo universitetssykehus.</p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">– Vi har et håp som alle andre. Det er å finne en ny behandling, en bremsemedisin som kan forlenge livet. Pasientene blir ikke kurert. Sannsynligheten for det er veldig liten. Det beste utfallet er at vi kan bevise at <abbr class="_explanation_o9xde_140" tabindex="0" title="den nye medisinen">ILB<span aria-hidden="true" class="text-sans-s _title_o9xde_151" role="presentation"><span class="text-serif-l _word_o9xde_156">ILB</span>den nye medisinen</span></abbr> virker og at det kommer flere studier i etterkant av denne som tester nye produkter mot ALS.</p><section class="_portrait_ygndg_1 layout-component layout-normal layout-padded" data-body="false"><figure style="display:contents"><picture class="_picture_ygndg_60"><img alt="Bilde av Oslo universitetssykehus." class="_image_ygndg_42" height="37" itemprop="image" loading="lazy" sizes="480px" src="https://akamai.vgc.no/v2/images/1e5ab4bb-9a85-42c3-acf4-6199c6a246c8?format=auto&amp;w=40&amp;s=bd647799164a501d1dddfb4308d2e9997e58748c" srcset="https://akamai.vgc.no/v2/images/1e5ab4bb-9a85-42c3-acf4-6199c6a246c8?format=auto&amp;w=40&amp;s=bd647799164a501d1dddfb4308d2e9997e58748c 40w, https://akamai.vgc.no/v2/images/1e5ab4bb-9a85-42c3-acf4-6199c6a246c8?format=auto&amp;w=80&amp;s=117da01e2485714b559503f8815c4ea86fae1a3a 80w, https://akamai.vgc.no/v2/images/1e5ab4bb-9a85-42c3-acf4-6199c6a246c8?format=auto&amp;w=100&amp;s=2f4af12057a1ef1b61566368410b1ac7d2b9efe0 100w" width="40"></picture><figcaption class="_details_ygndg_24"><strong class="_name_ygndg_51 title-serif-xs">Oslo universitetssykehus.</strong><p class="_paragraph_o9xde_4 text-sans-m _description_ygndg_56">Prosjektleder Angelina Hatlø Maniaol, nevrolog og overlege ved OUS</p></figcaption></figure></section><h2 class="_heading_o9xde_1 _heading_xtcu6_1 layout-component text-serif-m layout-normal text-serif-m layout-padded"><strong class="_strong_o9xde_25">– Hun står uten behandlingsalternativer</strong></h2><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">Overlege og spesialist i nevrologi, Abdullah Mohammud, søkte i oktober i fjor på vegne av Kirsten Jacobsen, om tilgang til den nye medisinen utenom OUS-studien, et såkalt godkjenningsfritak. </p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">Legen er tilknyttet Oslo universitetssykehus, Smerteklinikken og Colosseumklinikken. </p><div class="advertory-vg-netboard-wrapper__article"><div class="advertory-vg-netboard__article" id="netboard_4"></div></div><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">– Formålet med søknaden er å sikre pasienten tilgang til en potensielt symptomlindrende og livsforlengende behandling, som kan bidra til å bremse sykdomsprogresjon og bevare funksjonsevnen, skrev han i søknaden. </p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded"><strong class="_strong_o9xde_25">– Hun står uten behandlingsalternativer. 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renderer-url="https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/client.B4ukvwq6.js" ssr uid="2e5nrO"><figure class="_figure_qp4xg_1 layout-component layout-normal"><img alt="Foto: Line Møller / VG" class="_image_qp4xg_65 layout-component layout-normal" data-fullscreen-sizes="(min-width: 1000px) 2000px, 2000vw" data-track-element-type="Article image fullscreen" data-track-name="ImageFullscreen" decoding="async" height="5504" itemprop="image" loading="lazy" sizes="(min-width: 980px) 980px, 100vw" src="https://akamai.vgc.no/v2/images/7af797c0-34a8-46c2-b31a-0ccb8d17d7e8?format=auto&amp;w=40&amp;s=916fc115dbc9f52265295dd851e3fee30b6e40a7" srcset="https://akamai.vgc.no/v2/images/7af797c0-34a8-46c2-b31a-0ccb8d17d7e8?format=auto&amp;w=40&amp;s=916fc115dbc9f52265295dd851e3fee30b6e40a7 40w, https://akamai.vgc.no/v2/images/7af797c0-34a8-46c2-b31a-0ccb8d17d7e8?format=auto&amp;w=80&amp;s=69b29b1052d777006a6ee35cdf3faede77066b99 80w, 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https://akamai.vgc.no/v2/images/7af797c0-34a8-46c2-b31a-0ccb8d17d7e8?format=auto&amp;w=1080&amp;s=7064b6ffb76f0adfa13f0de93dcf6163e5af9943 1080w, https://akamai.vgc.no/v2/images/7af797c0-34a8-46c2-b31a-0ccb8d17d7e8?format=auto&amp;w=1440&amp;s=71697e0247c287e1865585c19015eba4dc619d9c 1440w, https://akamai.vgc.no/v2/images/7af797c0-34a8-46c2-b31a-0ccb8d17d7e8?format=auto&amp;w=2160&amp;s=28ae6c9569916efe58ca6b81b9bae0080c05adfa 2160w" style="object-position:0% 0%" width="8256"><figcaption class="text-sans-s _caption_qp4xg_10 layout-component layout-padded">Foto: Line Møller / VG</figcaption></figure><!--astro:end--></astro-island><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">For Kirsten ville den nye medisinen gitt håp. Men hun fikk avslag. </p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">– Vi har mottatt tre søknader om godkjenningsfritak for ILB de siste månedene. To av sakene er fortsatt under behandling. Fordi sakene ligner på hverandre, ønsker vi ikke å uttale oss nå, sier pressevakten i Direktoratet for Medisinske Produkter til VG.</p><astro-island await-children client="visible" component-export="PollWrapper" component-url="https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/PollWrapper.CLpAz43c.js" opts="{&quot;name&quot;:&quot;Component&quot;,&quot;value&quot;:{&quot;rootMargin&quot;:&quot;100%&quot;}}" prefix="r218" props="{&quot;answers&quot;:[1,[[0,{&quot;correct&quot;:[0,false],&quot;value&quot;:[0,&quot;Ja, uten tvil&quot;]}],[0,{&quot;correct&quot;:[0,false],&quot;value&quot;:[0,&quot;Kanskje&quot;]}],[0,{&quot;correct&quot;:[0,false],&quot;value&quot;:[0,&quot;Nei&quot;]}]]],&quot;fact&quot;:[0],&quot;id&quot;:[0,&quot;k0R0V9-b3455e2d62&quot;],&quot;image&quot;:[0],&quot;question&quot;:[0,&quot;Ville du tatt en uprøvd medisin hvis du var alvorlig syk?&quot;],&quot;subtype&quot;:[0,&quot;poll&quot;],&quot;type&quot;:[0,&quot;poll&quot;],&quot;richType&quot;:[0,&quot;poll-question&quot;],&quot;isDev&quot;:[0,false],&quot;statistics&quot;:[0,{&quot;questionId&quot;:[0,&quot;k0R0V9-b3455e2d62&quot;],&quot;answers&quot;:[0,{&quot;0&quot;:[0,&quot;272&quot;],&quot;1&quot;:[0,&quot;23&quot;],&quot;2&quot;:[0,&quot;3&quot;]}],&quot;lastUpdated&quot;:[0,1769331858933]}]}" renderer-url="https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/client.B4ukvwq6.js" ssr uid="Z1ObcjM"><section class="font-vg-sans layout-component layout-normal layout-padded _poll_7u87d_1" data-theme="accent" data-track-element-type="Poll" data-track-id="poll:k0R0V9-b3455e2d62" data-track-impression="true" data-track-name="Ville du tatt en uprøvd medisin hvis du var alvorlig syk?" id="poll-k0R0V9-b3455e2d62"><form class="_form_7u87d_40" data-subtype="poll"><fieldset class="_fieldset_7u87d_34"><div class="_contents_7u87d_41"><legend class="title-serif-s _legend_7u87d_112"><span class="_quizIntro_7u87d_58"></span><span>Ville du tatt en uprøvd medisin hvis du var alvorlig syk?</span></legend><input hidden="" id="0-k0R0V9-b3455e2d62" name="k0R0V9-b3455e2d62" type="radio" value="0"><label class="_label_7u87d_17" data-track-id="poll:k0R0V9-b3455e2d62:0" data-track-name="Ja, uten tvil" for="0-k0R0V9-b3455e2d62" style="--percentage:0%" tabindex="0"><span class="_letter_7u87d_103">a</span><span class="text-sans-m _value_7u87d_140">Ja, uten tvil</span></label><input hidden="" id="1-k0R0V9-b3455e2d62" name="k0R0V9-b3455e2d62" type="radio" value="1"><label class="_label_7u87d_17" data-track-id="poll:k0R0V9-b3455e2d62:1" data-track-name="Kanskje" for="1-k0R0V9-b3455e2d62" style="--percentage:0%" tabindex="0"><span class="_letter_7u87d_103">b</span><span class="text-sans-m _value_7u87d_140">Kanskje</span></label><input hidden="" id="2-k0R0V9-b3455e2d62" name="k0R0V9-b3455e2d62" type="radio" value="2"><label class="_label_7u87d_17" data-track-id="poll:k0R0V9-b3455e2d62:2" data-track-name="Nei" for="2-k0R0V9-b3455e2d62" style="--percentage:0%" tabindex="0"><span class="_letter_7u87d_103">c</span><span class="text-sans-m _value_7u87d_140">Nei</span></label></div></fieldset></form></section><!--astro:end--></astro-island> <p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">Medisinen som nå skal testes ut i Norge, er tidligere testet i et svensk/britisk prosjekt. Her er det rapportert om funksjonsforbedring hos flere pasienter og ingen alvorlige bivirkninger av den nyutviklede medisinen. </p><div class="advertory-vg-netboard-wrapper__article"><div class="advertory-vg-netboard__article" id="netboard_5"></div></div><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">Blant ALS-syke har erfaringene til <abbr class="_explanation_o9xde_140" tabindex="0" title="https://www.neurologiisverige.se/als-medicinen-ger-erik-framtidshopp/?utm_source=chatgpt.com">svenske Erik<span aria-hidden="true" class="text-sans-s _title_o9xde_151" role="presentation"><span class="text-serif-l _word_o9xde_156">svenske Erik</span>https://www.neurologiisverige.se/als-medicinen-ger-erik-framtidshopp/?utm_source=chatgpt.com</span></abbr>, en pasient i 30-årene, tent et håp. </p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">Han har selv fortalt i svenske medier at han ble tydelig bedre etter å ha deltatt i prosjektet.  </p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">VG får opplyst at Erik er den eneste pasienten i studiet som fortsatt lever. </p><h2 class="_heading_o9xde_1 _heading_xtcu6_1 _heading_1rauo_1 layout-component text-serif-m layout-normal layout-padded" id="Beinet sviktet"> Beinet sviktet</h2><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">Kirsten Jacobsens første symptomer på alvorlig sykdom, var et bein som svikt et.</p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">– Etter hvert greide jeg ikke å gå lenger, sier hun.</p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">– Det utviklet seg gradvis. Det er det som er denne sykdommen. Den er grusom. Du har gradvise tap av muskulatur hver dag. Det er nådeløst og det går sakte, sier ektemannen Tallak Thorleifsson.</p><astro-island await-children client="visible" component-export="Image" component-url="https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/Image.r_XTj6LO.js" opts="{&quot;name&quot;:&quot;Image&quot;,&quot;value&quot;:true}" prefix="r164" props="{&quot;alt&quot;:[0],&quot;caption&quot;:[0,&quot;Foto: Line Møller / 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renderer-url="https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/client.B4ukvwq6.js" ssr uid="Z2afPsU"><figure class="_figure_qp4xg_1 layout-component layout-normal"><img alt="Foto: Line Møller / VG" class="_image_qp4xg_65 layout-component layout-normal" data-fullscreen-sizes="(min-width: 1000px) 2000px, 2000vw" data-track-element-type="Article image fullscreen" data-track-name="ImageFullscreen" decoding="async" height="5238" itemprop="image" loading="lazy" sizes="(min-width: 980px) 980px, 100vw" src="https://akamai.vgc.no/v2/images/e0d7776b-9279-42e3-8d53-7eb1b76453f2?format=auto&amp;w=40&amp;s=3bb7b6dbbd9a276a4f2ca5aad6aa77ac4509d756" srcset="https://akamai.vgc.no/v2/images/e0d7776b-9279-42e3-8d53-7eb1b76453f2?format=auto&amp;w=40&amp;s=3bb7b6dbbd9a276a4f2ca5aad6aa77ac4509d756 40w, https://akamai.vgc.no/v2/images/e0d7776b-9279-42e3-8d53-7eb1b76453f2?format=auto&amp;w=80&amp;s=3510bcdc875356b81f349ffaaef89d47e4861635 80w, https://akamai.vgc.no/v2/images/e0d7776b-9279-42e3-8d53-7eb1b76453f2?format=auto&amp;w=100&amp;s=fb2e9a4cd38dd227ee34fe840597fcff9b81ca14 100w, https://akamai.vgc.no/v2/images/e0d7776b-9279-42e3-8d53-7eb1b76453f2?format=auto&amp;w=200&amp;s=5c79dec05b958d4c13c09bf4ee96efb575a1ed31 200w, https://akamai.vgc.no/v2/images/e0d7776b-9279-42e3-8d53-7eb1b76453f2?format=auto&amp;w=240&amp;s=a20cb23ec15b7a9fcd82a495bb1afa62c326fc93 240w, https://akamai.vgc.no/v2/images/e0d7776b-9279-42e3-8d53-7eb1b76453f2?format=auto&amp;w=480&amp;s=a7f82d7765d24c278e4bfe8c133ad6314ecca1ce 480w, https://akamai.vgc.no/v2/images/e0d7776b-9279-42e3-8d53-7eb1b76453f2?format=auto&amp;w=580&amp;s=987e70d894b5b0564357a4168858341aeb649913 580w, https://akamai.vgc.no/v2/images/e0d7776b-9279-42e3-8d53-7eb1b76453f2?format=auto&amp;w=720&amp;s=c97a37864d22d964ef10f0cc04ae121bb190bf72 720w, https://akamai.vgc.no/v2/images/e0d7776b-9279-42e3-8d53-7eb1b76453f2?format=auto&amp;w=1080&amp;s=5ce4dcba9636246b1562a31a81361b5ed41601f4 1080w, https://akamai.vgc.no/v2/images/e0d7776b-9279-42e3-8d53-7eb1b76453f2?format=auto&amp;w=1440&amp;s=bbe391f080b8688649f66037afecd13eb7b282ae 1440w, https://akamai.vgc.no/v2/images/e0d7776b-9279-42e3-8d53-7eb1b76453f2?format=auto&amp;w=2160&amp;s=7451bbbbf478258ae5afcbe7c5bb248fad8ecca6 2160w" style="object-position:0% 0%" width="3929"><figcaption class="text-sans-s _caption_qp4xg_10 layout-component layout-padded">Foto: Line Møller / VG</figcaption></figure><!--astro:end--></astro-island><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">Ved påsketider i 2023 kom diagnosen. </p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded"><strong class="_strong_o9xde_25">Kirsten hadde ALS. </strong></p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">Nesten tre år senere sitter hun i rullestolen hjemme i Oslo. Pustehjelp er blitt en del av hverdagen. </p><h2 class="_heading_o9xde_1 _heading_xtcu6_1 _heading_1rauo_1 layout-component text-serif-m layout-normal layout-padded" id="– Et siste håp"> – Et siste håp</h2><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">ALS-diagnosen er tung for hele familien. Håpet var et positivt svar på søknaden om å få bruke ILB.</p><div class="advertory-vg-netboard-wrapper__article"><div class="advertory-vg-netboard__article" id="netboard_6"></div></div><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">– Det oppleves dypt urettferdig at moren vår nektes et siste forsøk, selv om hun tar både kostnad og risiko innenfor en ordning som er ment å gi håp til alvorlig syke uten behandlingsalternativer,  sier datteren Tilde Thorleifsson. </p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded"><strong class="_strong_o9xde_25">– Et nei i en slik situasjon er ikke nøytralt – det er et valg om å beskytte systemet fremfor å vise medmenneskelighet.</strong></p><astro-island await-children client="visible" component-export="Image" component-url="https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/Image.r_XTj6LO.js" opts="{&quot;name&quot;:&quot;Image&quot;,&quot;value&quot;:true}" prefix="r173" props="{&quot;alt&quot;:[0],&quot;caption&quot;:[0,&quot;Foto: Line Møller / 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renderer-url="https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/client.B4ukvwq6.js" ssr uid="FQC7S"><figure class="_figure_qp4xg_1 layout-component layout-normal"><img alt="Foto: Line Møller / VG" class="_image_qp4xg_65 layout-component layout-normal" data-fullscreen-sizes="(min-width: 1000px) 2000px, 2000vw" data-track-element-type="Article image fullscreen" data-track-name="ImageFullscreen" decoding="async" height="3651" itemprop="image" loading="lazy" sizes="(min-width: 980px) 980px, 100vw" src="https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=40&amp;s=627966fce50ef76c6a217f4373dc2b92092ed531" srcset="https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=40&amp;s=627966fce50ef76c6a217f4373dc2b92092ed531 40w, https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=80&amp;s=621e555f162f7f1bd60e7e4f8859420d1b1c4131 80w, https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=100&amp;s=b7f901f2655ecb954f0ff2deb4b0431d0d00e4b8 100w, https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=200&amp;s=ffbad8afa51aaeba2ee3a636945eaa7775a78b96 200w, https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=240&amp;s=6f83cdb9e97431536dbdeff1cbf3b9aa5a1731eb 240w, https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=480&amp;s=323f4826a92e7c1cdbe75967217dbb543808b027 480w, https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=580&amp;s=1e2f875acb7526aeec47f548c3f3336a3936b020 580w, https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=720&amp;s=8c493154cbc69d8b6ed49f34d06ba07f3fd9ea0f 720w, https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=1080&amp;s=35f1a532c71416f45c82d834ccbcc0eced3c124e 1080w, https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=1440&amp;s=01950fdd1ed81f519c0a3e50d2b5e2959d5a8ba3 1440w, https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=2160&amp;s=6ebaf4bcc243258763f35217203e4c59ede3379d 2160w" style="object-position:0% 0%" width="4866"><figcaption class="text-sans-s _caption_qp4xg_10 layout-component layout-padded">Foto: Line Møller / VG</figcaption></figure><!--astro:end--></astro-island><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">Hun og broren Mandius har sett mamma bli stadig mer preget av sykdommen.</p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">– Når alternativet er en sikker død, opplever vi det som etisk uforståelig at frykten for å gjøre feil veier tyngre enn viljen til å gi håp, sier datteren. </p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">– Hvis behandlingen senere viser seg å ha effekt, vil det være tungt å leve med at hun ble nektet denne muligheten mens tiden fortsatt fantes. For meg som datter er dette først og fremst et etisk spørsmål om hvordan et system kan nekte døende et siste håp.</p><h2 class="_heading_o9xde_1 _heading_xtcu6_1 _heading_1rauo_1 layout-component text-serif-m layout-normal layout-padded" id="Forsker: – Stanset sykdomsutviklingen"> Forsker: – Stanset sykdomsutviklingen</h2><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">Ann Logan, professor i <abbr class="_explanation_o9xde_140" tabindex="0" title="Nevrodegenerative sykdommer er sykdommer som rammer hjernen, ryggmargen eller perifere nerver hvor det gradvis blir en nedbryting av nervevevet.

Vanlige nevrodegenerative sykdommer som rammer hjernen er: Alzheimers sykdom, Parkinsons sykdom og Huntingtons sykdom. Nevrodegenerative sykdommer som rammer ryggmarg og perifere nerver kan være: arvelig spastisk paraparese og nevropatier.">regenerativ<span aria-hidden="true" class="text-sans-s _title_o9xde_151" role="presentation"><span class="text-serif-l _word_o9xde_156">regenerativ</span>Nevrodegenerative sykdommer er sykdommer som rammer hjernen, ryggmargen eller perifere nerver hvor det gradvis blir en nedbryting av nervevevet.

Vanlige nevrodegenerative sykdommer som rammer hjernen er: Alzheimers sykdom, Parkinsons sykdom og Huntingtons sykdom. Nevrodegenerative sykdommer som rammer ryggmarg og perifere nerver kan være: arvelig spastisk paraparese og nevropatier.</span></abbr> medisin ved University of Warwick i England, er ansvarlig for den svensk/britiske studien. </p><div class="advertory-vg-netboard-wrapper__article"><div class="advertory-vg-netboard__article" id="netboard_7"></div></div><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded"><a class="_link_o9xde_39" href="https://www.neurologiisverige.se/wp-content/uploads/2025/02/Neurologi-i-Sverige-Nr-1-ALS-1.pdf">Til tidsskriftet Neurologi i Sverige, sier hun</a>: </p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">– Ingen andre ALS-legemidler har vist tilsvarende sykdomsmodifiserende effekter. </p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">Hun mener ILB tilhører neste generasjons legemidler som kan beskytte og reparere sykt og skadet nerve- og muskelvev.</p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">– Dette innebærer at det åpnes nye muligheter for å utvikle en helt ny klasse av <abbr class="_explanation_o9xde_140" tabindex="0" title=" Medisiner som er utviklet for å beskytte, reparere eller regenerere skadet nerve- og muskelvev.">neuroregenerative <span aria-hidden="true" class="text-sans-s _title_o9xde_151" role="presentation"><span class="text-serif-l _word_o9xde_156">neuroregenerative </span> Medisiner som er utviklet for å beskytte, reparere eller regenerere skadet nerve- og muskelvev.</span></abbr>legemidler. Det vi ser kan være et <abbr class="_explanation_o9xde_140" tabindex="0" title="En grunnleggende endring i måten man tenker på eller gjør ting, ofte brukt i vitenskapelige eller teknologiske sammenhenger.">paradigmeskifte <span aria-hidden="true" class="text-sans-s _title_o9xde_151" role="presentation"><span class="text-serif-l _word_o9xde_156">paradigmeskifte </span>En grunnleggende endring i måten man tenker på eller gjør ting, ofte brukt i vitenskapelige eller teknologiske sammenhenger.</span></abbr>ved behandling av ALS. Jeg forsvarer selvsagt arbeidet mitt med ILB fullt ut, og står bak alle uttalelser og sitater som er tillagt meg, sier professor Logan til VG.</p><section class="_portrait_ygndg_1 layout-component layout-normal layout-padded" data-body="false"><figure style="display:contents"><picture class="_picture_ygndg_60"><img alt="Bilde av University of Warwick/Researchgate" class="_image_ygndg_42" height="40" itemprop="image" loading="lazy" sizes="480px" src="https://akamai.vgc.no/v2/images/56e3e362-e0d7-4444-8407-72a8c54a924f?format=auto&amp;w=40&amp;s=f23ad4aad6348de7b555671d58adf9782cecfdb9" srcset="https://akamai.vgc.no/v2/images/56e3e362-e0d7-4444-8407-72a8c54a924f?format=auto&amp;w=40&amp;s=f23ad4aad6348de7b555671d58adf9782cecfdb9 40w, https://akamai.vgc.no/v2/images/56e3e362-e0d7-4444-8407-72a8c54a924f?format=auto&amp;w=80&amp;s=7b5f0dfcf3609ae822fa049183e375e8a69b87c8 80w, https://akamai.vgc.no/v2/images/56e3e362-e0d7-4444-8407-72a8c54a924f?format=auto&amp;w=100&amp;s=7bcf3b8db94f9f3ec9496130879cbc53ee4fb1fb 100w, https://akamai.vgc.no/v2/images/56e3e362-e0d7-4444-8407-72a8c54a924f?format=auto&amp;w=200&amp;s=27812bc8fbd2f71c806baa6cbba91bed744f5d53 200w, https://akamai.vgc.no/v2/images/56e3e362-e0d7-4444-8407-72a8c54a924f?format=auto&amp;w=240&amp;s=887bfcffc343e9c1b32d8fbd08b7c55c2ee55ff8 240w, https://akamai.vgc.no/v2/images/56e3e362-e0d7-4444-8407-72a8c54a924f?format=auto&amp;w=480&amp;s=599b22a5535dbd83bab375a9d2b1d2f2e4d12f38 480w" width="40"></picture><figcaption class="_details_ygndg_24"><strong class="_name_ygndg_51 title-serif-xs">University of Warwick/Researchgate</strong><p class="_paragraph_o9xde_4 text-sans-m _description_ygndg_56">Professor Ann Logan er forsker ved University of Warwick i England</p></figcaption></figure></section><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">Svenske <a class="_link_o9xde_39" href="https://neurologisktidskrift.se/sjukdomar/als/92-ny-metod-har-potentialen-att-bli-forsta-sjukdomsmodifierande-behandling-for-als.html">«Neurologisk Tidskrift»</a> skriver at prosjekt hun ledet kan ha funnet en metode som påvirker mekanismer som har betydning for utviklingen av ALS og andre <abbr class="_explanation_o9xde_140" tabindex="0" title="Nevrodegenerative sykdommer er en gruppe lidelser der nerveceller i hjernen, ryggmargen eller perifere nerver gradvis brytes ned og dør, noe som fører til progressive tap av funksjoner. Vanlige eksempler inkluderer Alzheimers sykdom, Parkinsons sykdom, Huntingtons sykdom og ALS, som alle medfører ulike symptomer som kognitiv svikt, bevegelsesproblemer, skjelving og muskelsvakhet. Disse sykdommene kjennetegnes av at de ikke-replikerbare nervecellene går tapt over tid, og de kan være både arvelige og sporadiske">nevrodegenerative sykdommer. <span aria-hidden="true" class="text-sans-s _title_o9xde_151" role="presentation"><span class="text-serif-l _word_o9xde_156">nevrodegenerative sykdommer. </span>Nevrodegenerative sykdommer er en gruppe lidelser der nerveceller i hjernen, ryggmargen eller perifere nerver gradvis brytes ned og dør, noe som fører til progressive tap av funksjoner. Vanlige eksempler inkluderer Alzheimers sykdom, Parkinsons sykdom, Huntingtons sykdom og ALS, som alle medfører ulike symptomer som kognitiv svikt, bevegelsesproblemer, skjelving og muskelsvakhet. Disse sykdommene kjennetegnes av at de ikke-replikerbare nervecellene går tapt over tid, og de kan være både arvelige og sporadiske</span></abbr></p><h2 class="_heading_o9xde_1 _heading_xtcu6_1 _heading_1rauo_1 layout-component text-serif-m layout-normal layout-padded" id="DMP: – Ikke godkjent og ikke forsvarlig"> DMP: – Ikke godkjent og ikke forsvarlig</h2><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">Direktoratet for medisinske produkter (<abbr class="_explanation_o9xde_140" tabindex="0" title="En offentlig etat som har ansvar for å regulere og overvåke medisinske produkter, inkludert legemidler, for å sikre at de er trygge og effektive.">DMP<span aria-hidden="true" class="text-sans-s _title_o9xde_151" role="presentation"><span class="text-serif-l _word_o9xde_156">DMP</span>En offentlig etat som har ansvar for å regulere og overvåke medisinske produkter, inkludert legemidler, for å sikre at de er trygge og effektive.</span></abbr>) slår fast at bruken av legemiddelet ILB ikke kan anses som forsvarlig. </p><div class="advertory-vg-netboard-wrapper__article"><div class="advertory-vg-netboard__article" id="netboard_8"></div></div><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">DMP viser til at medisinen ikke er godkjent i noe land og kun er testet i små, tidlige fase 1- og 2-studier, uten dokumentasjon på klinisk effekt. </p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded"><strong class="_strong_o9xde_25">– Systemet er umenneskelig. De vil beskytte seg selv. Men de må ikke ta fra oss håpet, sier Tallak, Kirstens ektemann og nærmeste støtte. </strong></p><astro-island await-children client="visible" component-export="Image" component-url="https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/Image.r_XTj6LO.js" opts="{&quot;name&quot;:&quot;Image&quot;,&quot;value&quot;:true}" prefix="r191" props="{&quot;alt&quot;:[0],&quot;caption&quot;:[0,&quot;Foto: Line Møller / 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renderer-url="https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/client.B4ukvwq6.js" ssr uid="Z1YkWk1"><figure class="_figure_qp4xg_1 layout-component layout-normal"><img alt="Foto: Line Møller / VG" class="_image_qp4xg_65 layout-component layout-normal" data-fullscreen-sizes="(min-width: 1000px) 2000px, 2000vw" data-track-element-type="Article image fullscreen" data-track-name="ImageFullscreen" decoding="async" height="4558" itemprop="image" loading="lazy" sizes="(min-width: 980px) 980px, 100vw" src="https://akamai.vgc.no/v2/images/ab2453be-f4b0-4063-9986-3071031f83a9?format=auto&amp;w=40&amp;s=edc2455b7f90da9c288def8a26dcbfa4dcb1c297" srcset="https://akamai.vgc.no/v2/images/ab2453be-f4b0-4063-9986-3071031f83a9?format=auto&amp;w=40&amp;s=edc2455b7f90da9c288def8a26dcbfa4dcb1c297 40w, https://akamai.vgc.no/v2/images/ab2453be-f4b0-4063-9986-3071031f83a9?format=auto&amp;w=80&amp;s=d231fcb52d81fa2557ca2e3f4231e680763053b4 80w, https://akamai.vgc.no/v2/images/ab2453be-f4b0-4063-9986-3071031f83a9?format=auto&amp;w=100&amp;s=eb23c6740f1b7d64cfbe78f54a50ff7b2d9985ee 100w, https://akamai.vgc.no/v2/images/ab2453be-f4b0-4063-9986-3071031f83a9?format=auto&amp;w=200&amp;s=0eae3d5ae4cfa1f88fadb655bbfe9403ea4dad96 200w, https://akamai.vgc.no/v2/images/ab2453be-f4b0-4063-9986-3071031f83a9?format=auto&amp;w=240&amp;s=da9d3fe6bb573dbb44a5d5557f5edec5db223918 240w, https://akamai.vgc.no/v2/images/ab2453be-f4b0-4063-9986-3071031f83a9?format=auto&amp;w=480&amp;s=61af717e5da4f3ea5d9c9efd831a31d4d21a4fc9 480w, https://akamai.vgc.no/v2/images/ab2453be-f4b0-4063-9986-3071031f83a9?format=auto&amp;w=580&amp;s=5c3eee4042a4182a4505a68385884d9098637d95 580w, https://akamai.vgc.no/v2/images/ab2453be-f4b0-4063-9986-3071031f83a9?format=auto&amp;w=720&amp;s=f3905185461f90cd68145430eca6437fd964bf64 720w, https://akamai.vgc.no/v2/images/ab2453be-f4b0-4063-9986-3071031f83a9?format=auto&amp;w=1080&amp;s=5a90da51d5c43fedcd19e827bf69f36e02353c88 1080w, https://akamai.vgc.no/v2/images/ab2453be-f4b0-4063-9986-3071031f83a9?format=auto&amp;w=1440&amp;s=600fb62ce32b13496cf08686ee31bf17675951df 1440w, https://akamai.vgc.no/v2/images/ab2453be-f4b0-4063-9986-3071031f83a9?format=auto&amp;w=2160&amp;s=ddfab71f4e39b671d2d89d78a6135a4c2894d3f3 2160w" style="object-position:0% 0%" width="6077"><figcaption class="text-sans-s _caption_qp4xg_10 layout-component layout-padded">Foto: Line Møller / VG</figcaption></figure><!--astro:end--></astro-island><ul class="_list_o9xde_3 _list_xtcu6_9 _unordered_o9xde_106 layout-component text-serif-m layout-normal text-serif-m layout-padded"><li class="_item_o9xde_30">Oslo universitetssykehus opplyser på forskningsprosjektets hjemmeside at hos ALS-pasienter har <strong class="_strong_o9xde_25">sikkerheten og den foreløpige effekten av ILB tidligere blitt undersøkt i to studier med til sammen 24 deltagere. </strong></li><li class="_item_o9xde_30">I begge studiene ble det rapportert at pasientgruppen<strong class="_strong_o9xde_25"> tålte medisinen godt</strong>. De fleste <strong class="_strong_o9xde_25">bivirkningene var milde eller moderate,</strong> de var kortvarige og trengte liten eller ingen behandling. </li><li class="_item_o9xde_30">OUS skriver at h<strong class="_strong_o9xde_25">ensikten med prosjektet er å måle effekten og sikkerheten av ILB </strong>sammenlignet med den nåværende standardbehandlingen, Riluzol.</li></ul><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">– Det finnes hverken vurdering av nytte- eller risikoprofil, preparatomtale eller kvalitetssikret informasjon om dosering og bivirkninger. Usikkerheten rundt sikkerhet og effekt vurderes som betydelig. Selv ved alvorlig sykdom som ALS kan ikke manglende behandlingsalternativer oppveie kravet til dokumentasjon, skriver Direktoratet for Medisinske Produkter til VG. </p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded"><strong class="_strong_o9xde_25">Direktoratet understreker at forsvarlighetskravet er absolutt og ikke kan fravikes. </strong></p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">– Vilkårene for godkjenningsfritak er ikke oppfylt, skriver overlege Ingrid Aas i Direktoratet for medisinske produkter til VG.</p><h2 class="_heading_o9xde_1 _heading_xtcu6_1 _heading_1rauo_1 layout-component text-serif-m layout-normal layout-padded" id="Avslag prøves i svensk rett"> Avslag prøves i svensk rett</h2><astro-island await-children client="visible" component-export="FactBox" component-url="https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/FactBox.BF0-FmDg.js" opts="{&quot;name&quot;:&quot;FactBox&quot;,&quot;value&quot;:true}" prefix="r197" props="{&quot;component&quot;:[0,{&quot;title&quot;:[0,{&quot;value&quot;:[0,&quot;Prøves i svensk rett&quot;]}],&quot;paragraphs&quot;:[1,[[0,{&quot;text&quot;:[0,{&quot;value&quot;:[0,&quot;Björn Pilström som er administrerende direktør og medisinsk direktør ​ i Tikomed, bekrefter overfor VG at ILB kun er testet for effekt i to små fase 2-studier med totalt 24 pasienter. Det er også testet for sikkerhet i fire fase 1-studier. Sammenlagt har drøyt 90 pasienter deltatt. &quot;],&quot;markup&quot;:[1,[[0,{&quot;type&quot;:[0,&quot;style:strong&quot;],&quot;offset&quot;:[0,105],&quot;length&quot;:[0,1]}],[0,{&quot;type&quot;:[0,&quot;explanation&quot;],&quot;offset&quot;:[0,144],&quot;length&quot;:[0,15],&quot;symbol&quot;:[0,&quot;I en fase 2-studie deltar flere pasienter. Man undersøker blant annet effekt, om bivirkninger er akesptable og trygghet for pasienten.&quot;]}],[0,{&quot;type&quot;:[0,&quot;style:strong&quot;],&quot;offset&quot;:[0,144],&quot;length&quot;:[0,15]}],[0,{&quot;type&quot;:[0,&quot;explanation&quot;],&quot;offset&quot;:[0,224],&quot;length&quot;:[0,14],&quot;symbol&quot;:[0,&quot;En fase 1-studie er første gang en ny behandling testes på mennesker. Målet er å finne ut om behandlingen er trygg,  eventuelle bivirkninger og dose medsin. Det er ofte få deltakere. &quot;]}],[0,{&quot;type&quot;:[0,&quot;style:strong&quot;],&quot;offset&quot;:[0,224],&quot;length&quot;:[0,14]}]]]}],&quot;blockType&quot;:[0,&quot;paragraph&quot;]}],[0,{&quot;text&quot;:[0,{&quot;value&quot;:[0,&quot;– Jeg har ingen mening om myndighetens vurdering av hvorvidt bruk av ILB kan anses forsvarlig, men det er likevel verdt å merke seg at Oslo universitetssykehus har startet sin randomiserte fase 2-studie med litt over 100 pasienter, der den ene behandlingsgruppen får ILB, sier Pihlstrøm. &quot;],&quot;markup&quot;:[0]}],&quot;blockType&quot;:[0,&quot;paragraph&quot;]}],[0,{&quot;text&quot;:[0,{&quot;value&quot;:[0,&quot;I en randomisert fase 2-studie blir pasientene tilfeldig fordelt mellom ulike behandlinger for å undersøke effekt og bivirkninger.&quot;],&quot;markup&quot;:[0]}],&quot;blockType&quot;:[0,&quot;paragraph&quot;]}],[0,{&quot;text&quot;:[0,{&quot;value&quot;:[0,&quot;Pilstrøm bekrefter at også det svenske Legemiddelverket har avslått søknader fra ALS-pasienter som ønsker å bruke ILB. &quot;],&quot;markup&quot;:[0]}],&quot;blockType&quot;:[0,&quot;paragraph&quot;]}],[0,{&quot;text&quot;:[0,{&quot;value&quot;:[0,&quot;– Dette prøves nå for svensk domstol, sier han.&quot;],&quot;markup&quot;:[0]}],&quot;blockType&quot;:[0,&quot;paragraph&quot;]}],[0,{&quot;text&quot;:[0,{&quot;value&quot;:[0,&quot;I Forvaltningsretten i Sverige er det nylig avsagt dom mot legemiddelverket. En ALS-pasient fikk avslag på å bruke ILB på lisens og gikk til sak. Retten stilte spørsmål ved avgjørelsen og ba legemiddelverket vurdere saken på nytt. Begrunnelsen er forskningen som finnes på ILB og manglende behandlingsalternativ for pasienten.&quot;],&quot;markup&quot;:[0]}],&quot;blockType&quot;:[0,&quot;paragraph&quot;]}]]],&quot;type&quot;:[0,&quot;fact&quot;]}],&quot;type&quot;:[0,&quot;news&quot;]}" renderer-url="https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/client.B4ukvwq6.js" ssr uid="ZlDS1Y"><div class="_factbox_16v91_30 layout-component layout-normal"><section aria-expanded="false" aria-label="Utvid" class="_box_1mfx9_1 font-vg-sans layout-component layout-normal _box_16v91_39" id="«r197R0»" role="region" style="max-height:var(--height)"><h2 class="_title_16v91_25 title-serif-s">Prøves i svensk rett</h2><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 _paragraph_16v91_10 layout-component text-serif-m layout-normal text-sans-m layout-padded">Björn Pilström som er administrerende direktør og medisinsk direktør ​ i Tikomed, bekrefter overfor VG at<strong class="_strong_o9xde_25"> </strong>ILB kun er testet for effekt i to små <abbr class="_explanation_o9xde_140" tabindex="0" title="I en fase 2-studie deltar flere pasienter. Man undersøker blant annet effekt, om bivirkninger er akesptable og trygghet for pasienten."><strong class="_strong_o9xde_25">fase 2-studier </strong><span aria-hidden="true" class="text-sans-s _title_o9xde_151 _title_16v91_25" role="presentation"><span class="text-serif-l _word_o9xde_156"><strong class="_strong_o9xde_25">fase 2-studier </strong></span>I en fase 2-studie deltar flere pasienter. Man undersøker blant annet effekt, om bivirkninger er akesptable og trygghet for pasienten.</span></abbr>med totalt 24 pasienter. Det er også testet for sikkerhet i fire <abbr class="_explanation_o9xde_140" tabindex="0" title="En fase 1-studie er første gang en ny behandling testes på mennesker. Målet er å finne ut om behandlingen er trygg,  eventuelle bivirkninger og dose medsin. Det er ofte få deltakere. "><strong class="_strong_o9xde_25">fase 1-studier</strong><span aria-hidden="true" class="text-sans-s _title_o9xde_151 _title_16v91_25" role="presentation"><span class="text-serif-l _word_o9xde_156"><strong class="_strong_o9xde_25">fase 1-studier</strong></span>En fase 1-studie er første gang en ny behandling testes på mennesker. Målet er å finne ut om behandlingen er trygg,  eventuelle bivirkninger og dose medsin. Det er ofte få deltakere. </span></abbr>. Sammenlagt har drøyt 90 pasienter deltatt. </p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 _paragraph_16v91_10 layout-component text-serif-m layout-normal text-sans-m layout-padded">– Jeg har ingen mening om myndighetens vurdering av hvorvidt bruk av ILB kan anses forsvarlig, men det er likevel verdt å merke seg at Oslo universitetssykehus har startet sin randomiserte fase 2-studie med litt over 100 pasienter, der den ene behandlingsgruppen får ILB, sier Pihlstrøm. </p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 _paragraph_16v91_10 layout-component text-serif-m layout-normal text-sans-m layout-padded">I en randomisert fase 2-studie blir pasientene tilfeldig fordelt mellom ulike behandlinger for å undersøke effekt og bivirkninger.</p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 _paragraph_16v91_10 layout-component text-serif-m layout-normal text-sans-m layout-padded">Pilstrøm bekrefter at også det svenske Legemiddelverket har avslått søknader fra ALS-pasienter som ønsker å bruke ILB. </p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 _paragraph_16v91_10 layout-component text-serif-m layout-normal text-sans-m layout-padded">– Dette prøves nå for svensk domstol, sier han.</p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 _paragraph_16v91_10 layout-component text-serif-m layout-normal text-sans-m layout-padded">I Forvaltningsretten i Sverige er det nylig avsagt dom mot legemiddelverket. En ALS-pasient fikk avslag på å bruke ILB på lisens og gikk til sak. Retten stilte spørsmål ved avgjørelsen og ba legemiddelverket vurdere saken på nytt. Begrunnelsen er forskningen som finnes på ILB og manglende behandlingsalternativ for pasienten.</p><button aria-controls="«r197R0»" class="_button_6bkpv_2 button-label-large _hug_6bkpv_81 _filled_6bkpv_106 _button_1mfx9_76" data-track-element-type="Factbox" data-track-id="factbox:proeves-i-svensk-rett" data-track-impression="true" data-track-name="Prøves i svensk rett" role="button" type="button"><span>Vis <!-- -->mer</span></button></section></div><!--astro:end--></astro-island><h2 class="_heading_o9xde_1 _heading_xtcu6_1 _heading_1rauo_1 layout-component text-serif-m layout-normal layout-padded" id="– Gis ingen sjanse"> – Gis ingen sjanse</h2><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">Kjartan Børdal Hovgaard (52) er alvorlig ALS-syk. Via lege har også han søkt om å få bruke ILB. Kjartan har vært selvstendig næringsdrivende innen fiskeoppdrett hjemme i Sogndal. </p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">Han er samboer og tenåringspappa.</p><astro-island await-children client="visible" component-export="Image" component-url="https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/Image.r_XTj6LO.js" opts="{&quot;name&quot;:&quot;Image&quot;,&quot;value&quot;:true}" prefix="r201" props="{&quot;alt&quot;:[0],&quot;caption&quot;:[0,&quot;KJEMPER: Kjartan Børdal Hovgaard (t.h) er familiefar og pappa til tenåringer. Han er alvorlig syk med ALS. Broren Hektor og familien gjør alt de kan for å støtte ham. Kjartan får heller ikke medisinen ILB.   Foto: Privat&quot;],&quot;device&quot;:[0],&quot;editorialJudgment&quot;:[0],&quot;imageAsset&quot;:[0,{&quot;id&quot;:[0,&quot;6298afdc-fdc7-404f-aeeb-070b4a78206a&quot;],&quot;size&quot;:[0,{&quot;width&quot;:[0,1400],&quot;height&quot;:[0,1600]}],&quot;urls&quot;:[1,[[0,{&quot;height&quot;:[0,46],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/6298afdc-fdc7-404f-aeeb-070b4a78206a?format=auto&amp;w=40&amp;s=374a703877a0599e179cffa0fe5dc95c8cb13f76&quot;],&quot;width&quot;:[0,40]}],[0,{&quot;height&quot;:[0,91],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/6298afdc-fdc7-404f-aeeb-070b4a78206a?format=auto&amp;w=80&amp;s=e8f7e2c4a474d79b22b4bfebcf3c493d99435399&quot;],&quot;width&quot;:[0,80]}],[0,{&quot;height&quot;:[0,114],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/6298afdc-fdc7-404f-aeeb-070b4a78206a?format=auto&amp;w=100&amp;s=b5c9fba4fa24f19afb753555abbe6001edc8335d&quot;],&quot;width&quot;:[0,100]}],[0,{&quot;height&quot;:[0,229],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/6298afdc-fdc7-404f-aeeb-070b4a78206a?format=auto&amp;w=200&amp;s=3bdcf67fbcbae1164f3bb6c202d11c998d906d20&quot;],&quot;width&quot;:[0,200]}],[0,{&quot;height&quot;:[0,274],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/6298afdc-fdc7-404f-aeeb-070b4a78206a?format=auto&amp;w=240&amp;s=a2e452d20a85720025411da50daea74b9a52d1e7&quot;],&quot;width&quot;:[0,240]}],[0,{&quot;height&quot;:[0,549],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/6298afdc-fdc7-404f-aeeb-070b4a78206a?format=auto&amp;w=480&amp;s=dd73f476a326371b5ce7a6b89a09ef8aa3567e1d&quot;],&quot;width&quot;:[0,480]}],[0,{&quot;height&quot;:[0,663],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/6298afdc-fdc7-404f-aeeb-070b4a78206a?format=auto&amp;w=580&amp;s=60e06538ee4a31d6b67c5c5042e93abf747acbb1&quot;],&quot;width&quot;:[0,580]}],[0,{&quot;height&quot;:[0,823],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/6298afdc-fdc7-404f-aeeb-070b4a78206a?format=auto&amp;w=720&amp;s=9981f2c65b2f51650c8952f28fbb49a6266cd8bf&quot;],&quot;width&quot;:[0,720]}],[0,{&quot;height&quot;:[0,1234],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/6298afdc-fdc7-404f-aeeb-070b4a78206a?format=auto&amp;w=1080&amp;s=c181122072c287c9d3b3829987c9b425d18a403e&quot;],&quot;width&quot;:[0,1080]}]]]}],&quot;layout&quot;:[0],&quot;marginBottom&quot;:[0],&quot;padded&quot;:[0],&quot;type&quot;:[0,&quot;news&quot;]}" renderer-url="https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/client.B4ukvwq6.js" ssr uid="Z28cVD5"><figure class="_figure_qp4xg_1 layout-component layout-normal"><img alt="KJEMPER: Kjartan Børdal Hovgaard (t.h) er familiefar og pappa til tenåringer. Han er alvorlig syk med ALS. Broren Hektor og familien gjør alt de kan for å støtte ham. Kjartan får heller ikke medisinen ILB.   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Han er alvorlig syk med ALS. Broren Hektor og familien gjør alt de kan for å støtte ham. Kjartan får heller ikke medisinen ILB.   Foto: Privat</figcaption></figure><!--astro:end--></astro-island><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">Friluftsmannen var vant til å ferdes til fjells. I 2017 begynte han å snuble på stiene. </p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">En venn døde av ALS i 2019. Kjartan var kjent med sykdomstegnene. </p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">ALS rammet hardt.</p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded"><strong class="_strong_o9xde_25">– ILB er godkjent for prosjektet ved OUS. Men det godkjennes ikke for pasienter som er så syke at de har kort tid igjen hvis de ikke får medisinen. Det er blankt nei. I Norge er det mange ALS-pasienter som ikke gis en sjanse til å overleve, sier Hektor Hovgaard, Kjartans bror. </strong></p><astro-island await-children client="visible" component-export="Image" component-url="https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/Image.r_XTj6LO.js" opts="{&quot;name&quot;:&quot;Image&quot;,&quot;value&quot;:true}" prefix="r206" props="{&quot;alt&quot;:[0],&quot;caption&quot;:[0,&quot;FRILUFTSMANN: Kjartan Børdal Hovgaard begynte å snuble på stiene i fjellet. Det var startet på svært alvorlig sykdom.   Foto: Privat&quot;],&quot;device&quot;:[0],&quot;editorialJudgment&quot;:[0],&quot;imageAsset&quot;:[0,{&quot;id&quot;:[0,&quot;2bf18d07-5e1d-4319-ac38-eb952d37b68b&quot;],&quot;size&quot;:[0,{&quot;width&quot;:[0,1599],&quot;height&quot;:[0,1049]}],&quot;urls&quot;:[1,[[0,{&quot;height&quot;:[0,26],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=40&amp;s=c9f2430ea493e95b3cb80eda1471341aceb61827&quot;],&quot;width&quot;:[0,40]}],[0,{&quot;height&quot;:[0,52],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=80&amp;s=0b5ef7417d7ce749329b70f80a46478942963170&quot;],&quot;width&quot;:[0,80]}],[0,{&quot;height&quot;:[0,66],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=100&amp;s=54e4ec22850a5a1c24afa83e47276f0e0b84b901&quot;],&quot;width&quot;:[0,100]}],[0,{&quot;height&quot;:[0,131],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=200&amp;s=16a980425ce1b08669adabd346dd3fb5e0df011c&quot;],&quot;width&quot;:[0,200]}],[0,{&quot;height&quot;:[0,157],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=240&amp;s=5f6ca8e1f7c8d8ce51b74f44fd7ddbecec4a52da&quot;],&quot;width&quot;:[0,240]}],[0,{&quot;height&quot;:[0,315],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=480&amp;s=02e8f312aa8d0061769f541b58900d6a0505d09b&quot;],&quot;width&quot;:[0,480]}],[0,{&quot;height&quot;:[0,381],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=580&amp;s=4a9b46fad181c32b8a201b60524ce3b265e6295f&quot;],&quot;width&quot;:[0,580]}],[0,{&quot;height&quot;:[0,472],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=720&amp;s=0dacb759ba74fc969c8009f6663d76740e962da0&quot;],&quot;width&quot;:[0,720]}],[0,{&quot;height&quot;:[0,709],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=1080&amp;s=505816e86c9a39dcd8128247fdbaaa95c822e4b7&quot;],&quot;width&quot;:[0,1080]}],[0,{&quot;height&quot;:[0,945],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=1440&amp;s=8b6a2cdfd823618b5604dd83d82b1d53f8854070&quot;],&quot;width&quot;:[0,1440]}]]]}],&quot;layout&quot;:[0],&quot;marginBottom&quot;:[0],&quot;padded&quot;:[0],&quot;type&quot;:[0,&quot;news&quot;]}" renderer-url="https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/client.B4ukvwq6.js" ssr uid="Z1C6yzA"><figure class="_figure_qp4xg_1 layout-component layout-normal"><img alt="FRILUFTSMANN: Kjartan Børdal Hovgaard begynte å snuble på stiene i fjellet. Det var startet på svært alvorlig sykdom.   Foto: Privat" class="_image_qp4xg_65 layout-component layout-normal" data-fullscreen-sizes="(min-width: 1000px) 2000px, 2000vw" data-track-element-type="Article image fullscreen" data-track-name="ImageFullscreen" decoding="async" height="1049" itemprop="image" loading="lazy" sizes="(min-width: 980px) 980px, 100vw" src="https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=40&amp;s=c9f2430ea493e95b3cb80eda1471341aceb61827" srcset="https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=40&amp;s=c9f2430ea493e95b3cb80eda1471341aceb61827 40w, https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=80&amp;s=0b5ef7417d7ce749329b70f80a46478942963170 80w, https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=100&amp;s=54e4ec22850a5a1c24afa83e47276f0e0b84b901 100w, https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=200&amp;s=16a980425ce1b08669adabd346dd3fb5e0df011c 200w, https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=240&amp;s=5f6ca8e1f7c8d8ce51b74f44fd7ddbecec4a52da 240w, https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=480&amp;s=02e8f312aa8d0061769f541b58900d6a0505d09b 480w, https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=580&amp;s=4a9b46fad181c32b8a201b60524ce3b265e6295f 580w, https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=720&amp;s=0dacb759ba74fc969c8009f6663d76740e962da0 720w, https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=1080&amp;s=505816e86c9a39dcd8128247fdbaaa95c822e4b7 1080w, https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=1440&amp;s=8b6a2cdfd823618b5604dd83d82b1d53f8854070 1440w" style="object-position:0% 0%" width="1599"><figcaption class="text-sans-s _caption_qp4xg_10 layout-component layout-padded">FRILUFTSMANN: Kjartan Børdal Hovgaard begynte å snuble på stiene i fjellet. Det var startet på svært alvorlig sykdom.   Foto: Privat</figcaption></figure><!--astro:end--></astro-island><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">Hans nærmeste familie reagerer sterkt på at pasienter med alvorlig eller livstruende sykdom ikke får tilgang til et lovende legemiddel, når det ikke finnes andre behandlingsalternativer. </p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">– Hvorfor bruker man ikke bestemmelsen som gir tidlig tilgang til nye medisiner? Og hvordan kan den samme medisinen være farlig utenfor en studiesetting, men trygg innenfor? Uten medisin dør Kjartan om kort tid, sier hans bror. </p><div class="advertory-vg-netboard-wrapper__article"><div class="advertory-vg-netboard__article" id="netboard_9"></div></div><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded">Advokat Max Henrik Jespersen ved Elden Advokatfirma, har på vegne av Kjartan Børdal Hovgaard klaget Direktoratet for medisinske produkter (DMP) inn for Helse- og omsorgsdepartementet.</p><p class="_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded"><em class="_em_o9xde_35">Vil du lese mer om helse og trening? VGs magasin Helse består av 100 sider om kroppen, formen og hodet – og kan kjøpes i <a class="_link_o9xde_39" href="https://butikk.vg.no/products/vg-helse-januar-2026">vår nettbutikk (fri frakt!)</a></em></p><astro-island await-children client="visible" component-export="Image" component-url="https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/Image.r_XTj6LO.js" opts="{&quot;name&quot;:&quot;Image&quot;,&quot;value&quot;:true}" prefix="r212" 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hverdagen med datteren min" data-track-primary-position="2" data-track-target-newsroom="vg" data-track-target-type="Article"><article class="_article_xeowg_1 _large_xeowg_41 _overlay_xeowg_50" data-color-scheme="dark"><a class="label-primary _link_xeowg_79" data-use-overlay-player="false" href="https://www.vg.no/helse/i/Okbxgq/torkil-broedholt-54-flytter-til-sverige-for-aa-faa-medisin"><div class="_content_xeowg_30"><div class="_titleContainer_xeowg_189"><h2 class="_title_1da04_1 _large_1da04_15 title-serif-s"><span class="_text_1da04_22">– Mister hverdagen med datteren min</span></h2></div><div><ul class="_meta_xeowg_160 text-sans-xs"><li class="_item_xeowg_163"><friendly-timestamp data-options="{&quot;day&quot;:&quot;numeric&quot;,&quot;hour&quot;:false,&quot;minute&quot;:false,&quot;month&quot;:&quot;short&quot;,&quot;weekday&quot;:false,&quot;shortPastPrefix&quot;:true}" style="display:contents"><time class="_timestamp_xeowg_247" datetime="2025-12-22T18:14:05.000Z"><span 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data-track-image-url="https://akamai.vgc.no/v2/images/9b73cf58-a154-4a65-8d2d-197161604e28?format=auto&amp;w=40&amp;s=dfc819f426952aaf189c113070e117d7d56bff75" data-track-impression="" data-track-name="Enkel metode reduserte alle ADHD-symptomer: – Veldig bra" data-track-primary-position="5" data-track-target-newsroom="vg" data-track-target-type="Article"><article class="_article_xeowg_1 _small_xeowg_97"><a class="label-primary _link_xeowg_79" data-use-overlay-player="false" href="https://www.vg.no/forbruker/i/XMlr9g/enkel-metode-reduserte-alle-adhd-symptomer"><div class="_content_xeowg_30"><div class="_titleContainer_xeowg_189"><h2 class="_title_1da04_1 _small_1da04_6 title-serif-s"><span class="_text_1da04_22">Enkel metode reduserte alle ADHD-symptomer: –⁠ Veldig bra</span></h2></div><div><ul class="_meta_xeowg_160 text-sans-xs"><li class="_paywall_xeowg_180 _item_xeowg_163">VG+</li><li class="_item_xeowg_163"><friendly-timestamp data-options="{&quot;day&quot;:&quot;numeric&quot;,&quot;hour&quot;:false,&quot;minute&quot;:false,&quot;month&quot;:&quot;short&quot;,&quot;weekday&quot;:false,&quot;shortPastPrefix&quot;:true}" style="display:contents"><time class="_timestamp_xeowg_247" datetime="2025-12-16T04:43:06.000Z"><span data-nosnippet="true">16. des. 2025</span></time></friendly-timestamp></li><li class="_item_xeowg_163">6 min</li></ul></div></div><picture class="_picture_xeowg_184"><img alt="" class="_image_xeowg_63" height="1421" loading="lazy" sizes="300px" src="https://akamai.vgc.no/v2/images/9b73cf58-a154-4a65-8d2d-197161604e28?format=auto&amp;w=40&amp;s=dfc819f426952aaf189c113070e117d7d56bff75" srcset="https://akamai.vgc.no/v2/images/9b73cf58-a154-4a65-8d2d-197161604e28?format=auto&amp;w=40&amp;s=dfc819f426952aaf189c113070e117d7d56bff75 40w, https://akamai.vgc.no/v2/images/9b73cf58-a154-4a65-8d2d-197161604e28?format=auto&amp;w=80&amp;s=54bcb36d6f7165c16f875b0fd60bdc2efd27a586 80w, 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https://akamai.vgc.no/v2/images/9b73cf58-a154-4a65-8d2d-197161604e28?format=auto&amp;w=1080&amp;s=4c82a64d8165d669cccf4209fa5741d845a1a539 1080w, https://akamai.vgc.no/v2/images/9b73cf58-a154-4a65-8d2d-197161604e28?format=auto&amp;w=1440&amp;s=c31d3416e6be9665d28f5dd5c56c805cb60d583a 1440w" style="object-position:initial" width="2108"></picture></a></article></track-element><!--astro:end--></astro-island></li></ul></section>   <astro-island await-children client="visible" component-export="default" component-url="https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/AffiliateArticles.ewD1HlbZ.js" opts="{&quot;name&quot;:&quot;AffiliateArticles&quot;,&quot;value&quot;:{&quot;rootMargin&quot;:&quot;100%&quot;}}" prefix="r119" props="{&quot;articleId&quot;:[0,&quot;k0R0V9&quot;],&quot;data-astro-cid-jwirc66j&quot;:[0,true]}" renderer-url="https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/client.B4ukvwq6.js" ssr uid="16uE8D"><section class="_articles_zulis_1" data-nosnippet="true"><h3 class="_title_zulis_8 title-serif-s">Kommersielt innhold</h3></section><!--astro:end--></astro-island> <div class="advertory-vg-netboard-wrapper__article"><div class="advertory-vg-netboard__article" id="netboard_recirc_2"></div></div> <section> <h3 class="_sectionTitle_1klck_1 title-serif-s">
Kommersielt innhold
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   "article_id" : 99306,
   "author" : "Anne Stine Sæther",
   "category" : "Helse",
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   "content" : "Den nye medisinen som nå skal testes ut på ALS\\-syke i Norge er resultatet av et samarbeid mellom Universitetssykehuset i Göteborg og Queen Elizabeth Hospital i Birmingham i England.\n\n**Den lovende medisinen har fått navnet ILB.**\n\n– For meg er det ingen risiko ved å prøve disse medisinene. Jeg skal uansett dø, sier Kirsten Jacobsen \\(63\\).\n\n**VG har snakket med to ALS\\-syke \\- Kirsten \\(63\\) og 52\\-år gamle Kjartan Børdal Hovgaard. Ingen av dem har fått lov å delta i prosjektet, som ledes av Oslo Universitetssykehus \\(OUS\\).**\n\nBegge har også søkt om tilgang til medisinen utenom studien og fått avslag, selv om de selv foreslår at de kan betale for behandlingen.\n\nDet er ca 400 ALS\\-pasienter i Norge. I studien er det plass til 116 deltakere.\n\n– De som ikke får være med, overlates til ingen behandling og en sikker død. Jeg mener det er uetisk. De burde fått medisinen via godkjenningsfritak, eller i en egen «forskningsarm.» Er dette forsvarlig, spør Hektor Hovgaard, Kjartans bror.\n\n## Slik foregår studien:\n\n- Halvparten av de 116 deltagerne som er med i OUS\\-prosjektet får medisinen ILB, mens den andre halvdelen får Riluzol, en eksisterende medisin.\n- Riluzol beskrives som et legemiddel med svært begrenset effekt. Pasientene som deltar i studiet, vet ikke selv hva de får.\n- Prosjektet samarbeider med sykehus over hele landet.\n\n## – Oppfyller ikke kriteriene for å delta\n\n– Vi er veldig lei oss for pasienter vi må si nei til. En stor andel av ALS\\-pasientene oppfyller ikke kriteriene for å delta i studien. De er kommet for langt i sykdomsforløpet. For å delta må de ha funksjoner som kan måles, sier prosjektleder, overlege Angelina Hatlø Maniaol.\n\nHun er nevrolog ved Oslo universitetssykehus.\n\n– Vi har et håp som alle andre. Det er å finne en ny behandling, en bremsemedisin som kan forlenge livet. Pasientene blir ikke kurert. Sannsynligheten for det er veldig liten. Det beste utfallet er at vi kan bevise at ILB virker og at det kommer flere studier i etterkant av denne som tester nye produkter mot ALS.\n\nProsjektleder Angelina Hatlø Maniaol, nevrolog og overlege ved OUS\n\n## – Hun står uten behandlingsalternativer\n\nOverlege og spesialist i nevrologi, Abdullah Mohammud, søkte i oktober i fjor på vegne av Kirsten Jacobsen, om tilgang til den nye medisinen utenom OUS\\-studien, et såkalt godkjenningsfritak.\n\nLegen er tilknyttet Oslo universitetssykehus, Smerteklinikken og Colosseumklinikken.\n\n– Formålet med søknaden er å sikre pasienten tilgang til en potensielt symptomlindrende og livsforlengende behandling, som kan bidra til å bremse sykdomsprogresjon og bevare funksjonsevnen, skrev han i søknaden.\n\n**– Hun står uten behandlingsalternativer. Pasienten er kjent med og aksepterer at det for medisiner som er under utvikling, kan oppstå tidligere ukjente bivirkninger, også av alvorlig grad eller fatale.**\n\nFor Kirsten ville den nye medisinen gitt håp. Men hun fikk avslag.\n\n– Vi har mottatt tre søknader om godkjenningsfritak for ILB de siste månedene. To av sakene er fortsatt under behandling. Fordi sakene ligner på hverandre, ønsker vi ikke å uttale oss nå, sier pressevakten i Direktoratet for Medisinske Produkter til VG.\n\nMedisinen som nå skal testes ut i Norge, er tidligere testet i et svensk/britisk prosjekt. Her er det rapportert om funksjonsforbedring hos flere pasienter og ingen alvorlige bivirkninger av den nyutviklede medisinen.\n\nBlant ALS\\-syke har erfaringene til svenske Erik, en pasient i 30\\-årene, tent et håp.\n\nHan har selv fortalt i svenske medier at han ble tydelig bedre etter å ha deltatt i prosjektet.\n\nVG får opplyst at Erik er den eneste pasienten i studiet som fortsatt lever.\n\n## Beinet sviktet\n\nKirsten Jacobsens første symptomer på alvorlig sykdom, var et bein som svikt et.\n\n– Etter hvert greide jeg ikke å gå lenger, sier hun.\n\n– Det utviklet seg gradvis. Det er det som er denne sykdommen. Den er grusom. Du har gradvise tap av muskulatur hver dag. Det er nådeløst og det går sakte, sier ektemannen Tallak Thorleifsson.\n\nVed påsketider i 2023 kom diagnosen.\n\n**Kirsten hadde ALS.**\n\nNesten tre år senere sitter hun i rullestolen hjemme i Oslo. Pustehjelp er blitt en del av hverdagen.\n\n## – Et siste håp\n\nALS\\-diagnosen er tung for hele familien. Håpet var et positivt svar på søknaden om å få bruke ILB.\n\n– Det oppleves dypt urettferdig at moren vår nektes et siste forsøk, selv om hun tar både kostnad og risiko innenfor en ordning som er ment å gi håp til alvorlig syke uten behandlingsalternativer, sier datteren Tilde Thorleifsson.\n\n**– Et nei i en slik situasjon er ikke nøytralt – det er et valg om å beskytte systemet fremfor å vise medmenneskelighet.**\n\nHun og broren Mandius har sett mamma bli stadig mer preget av sykdommen.\n\n– Når alternativet er en sikker død, opplever vi det som etisk uforståelig at frykten for å gjøre feil veier tyngre enn viljen til å gi håp, sier datteren.\n\n– Hvis behandlingen senere viser seg å ha effekt, vil det være tungt å leve med at hun ble nektet denne muligheten mens tiden fortsatt fantes. For meg som datter er dette først og fremst et etisk spørsmål om hvordan et system kan nekte døende et siste håp.\n\n## Forsker: – Stanset sykdomsutviklingen\n\nAnn Logan, professor i regenerativ medisin ved University of Warwick i England, er ansvarlig for den svensk/britiske studien.\n\n[Til tidsskriftet Neurologi i Sverige, sier hun](https://www.neurologiisverige.se/wp-content/uploads/2025/02/Neurologi-i-Sverige-Nr-1-ALS-1.pdf):\n\n– Ingen andre ALS\\-legemidler har vist tilsvarende sykdomsmodifiserende effekter.\n\nHun mener ILB tilhører neste generasjons legemidler som kan beskytte og reparere sykt og skadet nerve\\- og muskelvev.\n\n– Dette innebærer at det åpnes nye muligheter for å utvikle en helt ny klasse av neuroregenerative legemidler. Det vi ser kan være et paradigmeskifte ved behandling av ALS. Jeg forsvarer selvsagt arbeidet mitt med ILB fullt ut, og står bak alle uttalelser og sitater som er tillagt meg, sier professor Logan til VG.\n\nProfessor Ann Logan er forsker ved University of Warwick i England\n\nSvenske [«Neurologisk Tidskrift»](https://neurologisktidskrift.se/sjukdomar/als/92-ny-metod-har-potentialen-att-bli-forsta-sjukdomsmodifierande-behandling-for-als.html) skriver at prosjekt hun ledet kan ha funnet en metode som påvirker mekanismer som har betydning for utviklingen av ALS og andre nevrodegenerative sykdommer.\n\n## DMP: – Ikke godkjent og ikke forsvarlig\n\nDirektoratet for medisinske produkter \\(DMP\\) slår fast at bruken av legemiddelet ILB ikke kan anses som forsvarlig.\n\nDMP viser til at medisinen ikke er godkjent i noe land og kun er testet i små, tidlige fase 1\\- og 2\\-studier, uten dokumentasjon på klinisk effekt.\n\n**– Systemet er umenneskelig. De vil beskytte seg selv. Men de må ikke ta fra oss håpet, sier Tallak, Kirstens ektemann og nærmeste støtte.**\n\n- Oslo universitetssykehus opplyser på forskningsprosjektets hjemmeside at hos ALS\\-pasienter har **sikkerheten og den foreløpige effekten av ILB tidligere blitt undersøkt i to studier med til sammen 24 deltagere.**\n- I begge studiene ble det rapportert at pasientgruppen**tålte medisinen godt**. De fleste **bivirkningene var milde eller moderate,** de var kortvarige og trengte liten eller ingen behandling.\n- OUS skriver at h**ensikten med prosjektet er å måle effekten og sikkerheten av ILB**sammenlignet med den nåværende standardbehandlingen, Riluzol.\n\n– Det finnes hverken vurdering av nytte\\- eller risikoprofil, preparatomtale eller kvalitetssikret informasjon om dosering og bivirkninger. Usikkerheten rundt sikkerhet og effekt vurderes som betydelig. Selv ved alvorlig sykdom som ALS kan ikke manglende behandlingsalternativer oppveie kravet til dokumentasjon, skriver Direktoratet for Medisinske Produkter til VG.\n\n**Direktoratet understreker at forsvarlighetskravet er absolutt og ikke kan fravikes.**\n\n– Vilkårene for godkjenningsfritak er ikke oppfylt, skriver overlege Ingrid Aas i Direktoratet for medisinske produkter til VG.\n\n## Avslag prøves i svensk rett\n\n## – Gis ingen sjanse\n\nKjartan Børdal Hovgaard \\(52\\) er alvorlig ALS\\-syk. Via lege har også han søkt om å få bruke ILB. Kjartan har vært selvstendig næringsdrivende innen fiskeoppdrett hjemme i Sogndal.\n\nHan er samboer og tenåringspappa.\n\nFriluftsmannen var vant til å ferdes til fjells. I 2017 begynte han å snuble på stiene.\n\nEn venn døde av ALS i 2019. Kjartan var kjent med sykdomstegnene.\n\nALS rammet hardt.\n\n**– ILB er godkjent for prosjektet ved OUS. Men det godkjennes ikke for pasienter som er så syke at de har kort tid igjen hvis de ikke får medisinen. Det er blankt nei. I Norge er det mange ALS\\-pasienter som ikke gis en sjanse til å overleve, sier Hektor Hovgaard, Kjartans bror.**\n\nHans nærmeste familie reagerer sterkt på at pasienter med alvorlig eller livstruende sykdom ikke får tilgang til et lovende legemiddel, når det ikke finnes andre behandlingsalternativer.\n\n– Hvorfor bruker man ikke bestemmelsen som gir tidlig tilgang til nye medisiner? Og hvordan kan den samme medisinen være farlig utenfor en studiesetting, men trygg innenfor? Uten medisin dør Kjartan om kort tid, sier hans bror.\n\nAdvokat Max Henrik Jespersen ved Elden Advokatfirma, har på vegne av Kjartan Børdal Hovgaard klaget Direktoratet for medisinske produkter \\(DMP\\) inn for Helse\\- og omsorgsdepartementet.\n\n*Vil du lese mer om helse og trening? VGs magasin Helse består av 100 sider om kroppen, formen og hodet – og kan kjøpes i vår nettbutikk \\(fri frakt!\\)*",
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   "keywords" : "vg:helseoglivet, ALS, Sykdom, Diagnose",
   "metadata" : "{\"twitter\":{},\"author\":\"Anne Stine Sæther\",\"title\":\"Får ikke prøve banebrytende medisin: – Systemet er umenneskelig\",\"raw_feed_item\":\"<item><title>Får ikke prøve banebrytende medisin: – Systemet er umenneskelig</title><pubDate>Sun, 25 Jan 2026 08:57:55 GMT</pubDate><description>Ny forskning gir ALS-pasienter håp. Men alvorlig syke Kirsten og Kjartan får nei til å prøve. </description><link>https://www.vg.no/helse/i/k0R0V9/als-syke-kirsten-og-kjartan-fikk-nei-til-lovende-medisin</link><guid>https://www.vg.no/i/k0R0V9</guid><vg:waplink>https://www.vg.no/i/k0R0V9</vg:waplink><vg:body /><category>Helse</category><vg:img>https://akamai.vgc.no/v2/images/7db5dd3a-a54c-4b98-83ad-a82730f1e3b2?fit=crop&amp;format=auto&amp;h=1267&amp;w=1900&amp;s=5b86e343a0dadd7306016ccde3dd270daea80b1c</vg:img><vg:articleImg>https://akamai.vgc.no/v2/images/7db5dd3a-a54c-4b98-83ad-a82730f1e3b2?fit=crop&amp;format=auto&amp;h=1267&amp;w=1900&amp;s=5b86e343a0dadd7306016ccde3dd270daea80b1c</vg:articleImg><image>https://akamai.vgc.no/v2/images/7db5dd3a-a54c-4b98-83ad-a82730f1e3b2?fit=crop&amp;format=auto&amp;h=1267&amp;w=1900&amp;s=5b86e343a0dadd7306016ccde3dd270daea80b1c</image><imgRegular>https://akamai.vgc.no/v2/images/7db5dd3a-a54c-4b98-83ad-a82730f1e3b2?fit=crop&amp;format=auto&amp;h=1267&amp;w=1900&amp;s=5b86e343a0dadd7306016ccde3dd270daea80b1c</imgRegular><enclosure type=\\\"img/jpg\\\" url=\\\"https://akamai.vgc.no/v2/images/7db5dd3a-a54c-4b98-83ad-a82730f1e3b2?fit=crop&amp;format=auto&amp;h=1267&amp;w=1900&amp;s=5b86e343a0dadd7306016ccde3dd270daea80b1c\\\" /></item>\",\"is_paywalled\":0,\"image_url\":\"https://akamai.vgc.no/v2/images/7db5dd3a-a54c-4b98-83ad-a82730f1e3b2?format=auto&w=1080&s=337a21436b6ca87d2c6fea926657eadd2892ead7\",\"meta\":{\"robots\":\"max-image-preview:large, noarchive\",\"viewport\":\"width=device-width, initial-scale=1\",\"sentry-trace\":\"3bb9e950f5a7f73208db7b8d9747fcd4-c4a3e08857424bb5-0\",\"baggage\":\"sentry-environment=production,sentry-release=vgno-artikkel%40aae3e2430,sentry-public_key=2d8dce823c094e8b9733997b0bdf3f86,sentry-trace_id=3bb9e950f5a7f73208db7b8d9747fcd4,sentry-sampled=false,sentry-sample_rand=0.27988956506691665,sentry-sample_rate=0\",\"description\":\"Ny forskning gir ALS-pasienter håp. Men alvorlig syke Kirsten og Kjartan får nei til å prøve. \",\"keywords\":\"vg:helseoglivet, ALS, Sykdom, Diagnose\",\"publisheddate\":\"2026-01-25\"},\"content\":\"Den nye medisinen som nå skal testes ut på ALS\\\\-syke i Norge er resultatet av et samarbeid mellom Universitetssykehuset i Göteborg og Queen Elizabeth Hospital i Birmingham i England.\\n\\n**Den lovende medisinen har fått navnet ILB.**\\n\\n– For meg er det ingen risiko ved å prøve disse medisinene. Jeg skal uansett dø, sier Kirsten Jacobsen \\\\(63\\\\).\\n\\n**VG har snakket med to ALS\\\\-syke \\\\- Kirsten \\\\(63\\\\) og 52\\\\-år gamle Kjartan Børdal Hovgaard. Ingen av dem har fått lov å delta i prosjektet, som ledes av Oslo Universitetssykehus \\\\(OUS\\\\).**\\n\\nBegge har også søkt om tilgang til medisinen utenom studien og fått avslag, selv om de selv foreslår at de kan betale for behandlingen.\\n\\nDet er ca 400 ALS\\\\-pasienter i Norge. I studien er det plass til 116 deltakere.\\n\\n– De som ikke får være med, overlates til ingen behandling og en sikker død. Jeg mener det er uetisk. De burde fått medisinen via godkjenningsfritak, eller i en egen «forskningsarm.» Er dette forsvarlig, spør Hektor Hovgaard, Kjartans bror.\\n\\n## Slik foregår studien:\\n\\n- Halvparten av de 116 deltagerne som er med i OUS\\\\-prosjektet får medisinen ILB, mens den andre halvdelen får Riluzol, en eksisterende medisin.\\n- Riluzol beskrives som et legemiddel med svært begrenset effekt. Pasientene som deltar i studiet, vet ikke selv hva de får.\\n- Prosjektet samarbeider med sykehus over hele landet.\\n\\n## – Oppfyller ikke kriteriene for å delta\\n\\n– Vi er veldig lei oss for pasienter vi må si nei til. En stor andel av ALS\\\\-pasientene oppfyller ikke kriteriene for å delta i studien. De er kommet for langt i sykdomsforløpet. For å delta må de ha funksjoner som kan måles, sier prosjektleder, overlege Angelina Hatlø Maniaol.\\n\\nHun er nevrolog ved Oslo universitetssykehus.\\n\\n– Vi har et håp som alle andre. Det er å finne en ny behandling, en bremsemedisin som kan forlenge livet. Pasientene blir ikke kurert. Sannsynligheten for det er veldig liten. Det beste utfallet er at vi kan bevise at ILB virker og at det kommer flere studier i etterkant av denne som tester nye produkter mot ALS.\\n\\nProsjektleder Angelina Hatlø Maniaol, nevrolog og overlege ved OUS\\n\\n## – Hun står uten behandlingsalternativer\\n\\nOverlege og spesialist i nevrologi, Abdullah Mohammud, søkte i oktober i fjor på vegne av Kirsten Jacobsen, om tilgang til den nye medisinen utenom OUS\\\\-studien, et såkalt godkjenningsfritak.\\n\\nLegen er tilknyttet Oslo universitetssykehus, Smerteklinikken og Colosseumklinikken.\\n\\n– Formålet med søknaden er å sikre pasienten tilgang til en potensielt symptomlindrende og livsforlengende behandling, som kan bidra til å bremse sykdomsprogresjon og bevare funksjonsevnen, skrev han i søknaden.\\n\\n**– Hun står uten behandlingsalternativer. Pasienten er kjent med og aksepterer at det for medisiner som er under utvikling, kan oppstå tidligere ukjente bivirkninger, også av alvorlig grad eller fatale.**\\n\\nFor Kirsten ville den nye medisinen gitt håp. Men hun fikk avslag.\\n\\n– Vi har mottatt tre søknader om godkjenningsfritak for ILB de siste månedene. To av sakene er fortsatt under behandling. Fordi sakene ligner på hverandre, ønsker vi ikke å uttale oss nå, sier pressevakten i Direktoratet for Medisinske Produkter til VG.\\n\\nMedisinen som nå skal testes ut i Norge, er tidligere testet i et svensk/britisk prosjekt. Her er det rapportert om funksjonsforbedring hos flere pasienter og ingen alvorlige bivirkninger av den nyutviklede medisinen.\\n\\nBlant ALS\\\\-syke har erfaringene til svenske Erik, en pasient i 30\\\\-årene, tent et håp.\\n\\nHan har selv fortalt i svenske medier at han ble tydelig bedre etter å ha deltatt i prosjektet.\\n\\nVG får opplyst at Erik er den eneste pasienten i studiet som fortsatt lever.\\n\\n## Beinet sviktet\\n\\nKirsten Jacobsens første symptomer på alvorlig sykdom, var et bein som svikt et.\\n\\n– Etter hvert greide jeg ikke å gå lenger, sier hun.\\n\\n– Det utviklet seg gradvis. Det er det som er denne sykdommen. Den er grusom. Du har gradvise tap av muskulatur hver dag. Det er nådeløst og det går sakte, sier ektemannen Tallak Thorleifsson.\\n\\nVed påsketider i 2023 kom diagnosen.\\n\\n**Kirsten hadde ALS.**\\n\\nNesten tre år senere sitter hun i rullestolen hjemme i Oslo. Pustehjelp er blitt en del av hverdagen.\\n\\n## – Et siste håp\\n\\nALS\\\\-diagnosen er tung for hele familien. Håpet var et positivt svar på søknaden om å få bruke ILB.\\n\\n– Det oppleves dypt urettferdig at moren vår nektes et siste forsøk, selv om hun tar både kostnad og risiko innenfor en ordning som er ment å gi håp til alvorlig syke uten behandlingsalternativer, sier datteren Tilde Thorleifsson.\\n\\n**– Et nei i en slik situasjon er ikke nøytralt – det er et valg om å beskytte systemet fremfor å vise medmenneskelighet.**\\n\\nHun og broren Mandius har sett mamma bli stadig mer preget av sykdommen.\\n\\n– Når alternativet er en sikker død, opplever vi det som etisk uforståelig at frykten for å gjøre feil veier tyngre enn viljen til å gi håp, sier datteren.\\n\\n– Hvis behandlingen senere viser seg å ha effekt, vil det være tungt å leve med at hun ble nektet denne muligheten mens tiden fortsatt fantes. For meg som datter er dette først og fremst et etisk spørsmål om hvordan et system kan nekte døende et siste håp.\\n\\n## Forsker: – Stanset sykdomsutviklingen\\n\\nAnn Logan, professor i regenerativ medisin ved University of Warwick i England, er ansvarlig for den svensk/britiske studien.\\n\\n[Til tidsskriftet Neurologi i Sverige, sier hun](https://www.neurologiisverige.se/wp-content/uploads/2025/02/Neurologi-i-Sverige-Nr-1-ALS-1.pdf):\\n\\n– Ingen andre ALS\\\\-legemidler har vist tilsvarende sykdomsmodifiserende effekter.\\n\\nHun mener ILB tilhører neste generasjons legemidler som kan beskytte og reparere sykt og skadet nerve\\\\- og muskelvev.\\n\\n– Dette innebærer at det åpnes nye muligheter for å utvikle en helt ny klasse av neuroregenerative legemidler. Det vi ser kan være et paradigmeskifte ved behandling av ALS. Jeg forsvarer selvsagt arbeidet mitt med ILB fullt ut, og står bak alle uttalelser og sitater som er tillagt meg, sier professor Logan til VG.\\n\\nProfessor Ann Logan er forsker ved University of Warwick i England\\n\\nSvenske [«Neurologisk Tidskrift»](https://neurologisktidskrift.se/sjukdomar/als/92-ny-metod-har-potentialen-att-bli-forsta-sjukdomsmodifierande-behandling-for-als.html) skriver at prosjekt hun ledet kan ha funnet en metode som påvirker mekanismer som har betydning for utviklingen av ALS og andre nevrodegenerative sykdommer.\\n\\n## DMP: – Ikke godkjent og ikke forsvarlig\\n\\nDirektoratet for medisinske produkter \\\\(DMP\\\\) slår fast at bruken av legemiddelet ILB ikke kan anses som forsvarlig.\\n\\nDMP viser til at medisinen ikke er godkjent i noe land og kun er testet i små, tidlige fase 1\\\\- og 2\\\\-studier, uten dokumentasjon på klinisk effekt.\\n\\n**– Systemet er umenneskelig. De vil beskytte seg selv. Men de må ikke ta fra oss håpet, sier Tallak, Kirstens ektemann og nærmeste støtte.**\\n\\n- Oslo universitetssykehus opplyser på forskningsprosjektets hjemmeside at hos ALS\\\\-pasienter har **sikkerheten og den foreløpige effekten av ILB tidligere blitt undersøkt i to studier med til sammen 24 deltagere.**\\n- I begge studiene ble det rapportert at pasientgruppen**tålte medisinen godt**. De fleste **bivirkningene var milde eller moderate,** de var kortvarige og trengte liten eller ingen behandling.\\n- OUS skriver at h**ensikten med prosjektet er å måle effekten og sikkerheten av ILB**sammenlignet med den nåværende standardbehandlingen, Riluzol.\\n\\n– Det finnes hverken vurdering av nytte\\\\- eller risikoprofil, preparatomtale eller kvalitetssikret informasjon om dosering og bivirkninger. Usikkerheten rundt sikkerhet og effekt vurderes som betydelig. Selv ved alvorlig sykdom som ALS kan ikke manglende behandlingsalternativer oppveie kravet til dokumentasjon, skriver Direktoratet for Medisinske Produkter til VG.\\n\\n**Direktoratet understreker at forsvarlighetskravet er absolutt og ikke kan fravikes.**\\n\\n– Vilkårene for godkjenningsfritak er ikke oppfylt, skriver overlege Ingrid Aas i Direktoratet for medisinske produkter til VG.\\n\\n## Avslag prøves i svensk rett\\n\\n## – Gis ingen sjanse\\n\\nKjartan Børdal Hovgaard \\\\(52\\\\) er alvorlig ALS\\\\-syk. Via lege har også han søkt om å få bruke ILB. Kjartan har vært selvstendig næringsdrivende innen fiskeoppdrett hjemme i Sogndal.\\n\\nHan er samboer og tenåringspappa.\\n\\nFriluftsmannen var vant til å ferdes til fjells. I 2017 begynte han å snuble på stiene.\\n\\nEn venn døde av ALS i 2019. Kjartan var kjent med sykdomstegnene.\\n\\nALS rammet hardt.\\n\\n**– ILB er godkjent for prosjektet ved OUS. Men det godkjennes ikke for pasienter som er så syke at de har kort tid igjen hvis de ikke får medisinen. Det er blankt nei. I Norge er det mange ALS\\\\-pasienter som ikke gis en sjanse til å overleve, sier Hektor Hovgaard, Kjartans bror.**\\n\\nHans nærmeste familie reagerer sterkt på at pasienter med alvorlig eller livstruende sykdom ikke får tilgang til et lovende legemiddel, når det ikke finnes andre behandlingsalternativer.\\n\\n– Hvorfor bruker man ikke bestemmelsen som gir tidlig tilgang til nye medisiner? Og hvordan kan den samme medisinen være farlig utenfor en studiesetting, men trygg innenfor? Uten medisin dør Kjartan om kort tid, sier hans bror.\\n\\nAdvokat Max Henrik Jespersen ved Elden Advokatfirma, har på vegne av Kjartan Børdal Hovgaard klaget Direktoratet for medisinske produkter \\\\(DMP\\\\) inn for Helse\\\\- og omsorgsdepartementet.\\n\\n*Vil du lese mer om helse og trening? VGs magasin Helse består av 100 sider om kroppen, formen og hodet – og kan kjøpes i vår nettbutikk \\\\(fri frakt!\\\\)*\",\"source_updated_at\":\"2026-01-25 08:29:19\",\"schema\":{\"microdata\":{\"datePublished\":\"Publisert: 25.01.26 kl. 09:57\",\"articleBody\":\"        \"}},\"published_at\":\"2026-01-25 08:57:55\",\"og\":{\"type\":\"article\",\"url\":\"https://www.vg.no/helse/i/k0R0V9/als-syke-kirsten-og-kjartan-fikk-nei-til-lovende-medisin\",\"image\":\"https://akamai.vgc.no/v2/images/7db5dd3a-a54c-4b98-83ad-a82730f1e3b2?format=auto&w=1080&s=337a21436b6ca87d2c6fea926657eadd2892ead7\",\"title\":\"Får ikke prøve banebrytende medisin: – Systemet er umenneskelig\",\"description\":\"Ny forskning gir ALS-pasienter håp. Men alvorlig syke Kirsten og Kjartan får nei til å prøve. \",\"site_name\":\"VG\"},\"description\":\"Ny forskning gir ALS-pasienter håp. Men alvorlig syke Kirsten og Kjartan får nei til å prøve. \",\"keywords\":[\"vg:helseoglivet\",\"ALS\",\"Sykdom\",\"Diagnose\"],\"category\":\"Helse\"}",
   "og_title" : "Får ikke prøve banebrytende medisin: – Systemet er umenneskelig",
   "published_at" : "2026-01-25 08:57:55",
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href=\"https://www.vg.no/tilbud?utm_source=vgfront-header\">Januarsalg<svg class=\"_icon_bazfm_3\" id=\"Annonse_-_sort_svg__Layer_2\" viewbox=\"0 0 102.46 34.19\" xmlns=\"http://www.w3.org/2000/svg\"><g><path d=\"M97.49 33.88c.28-.46-.32-.3-.35-.55 1.33.1.26-1.1.85-1.29-.72-.1-1.38-.23-1.87-.49.82.08 1.56.23 1.89.36.37-.52.45-1.38.68-2.08-.88-.17-1.58-.47-2.55-.58-.91-1.54.61-2.29 1.11-2.23.16-.49.17-.05.22-.66-1.97-.65-.29-.11-2.25-.77.04-.43.07-.88.4-.97.77.06 1.37.24 1.87.49 1.14-1.3-.7-2.11 1.6-3.95.34.06.39.29.68.09.26-.65.68-2.69.96-3.31.34-.76.54-.09.81-.93.09-.29-.63 0-.36-.43.27-1.29 1.38-2.26 1.27-3.54C86.91 8.28 15.49-3.31 2.85.91c-.19.94.07 1.55.13 2.31-.23.16-.78-.06-.74.42.4 1.41-.32 1.46-.35 2.79-.02.84.72 1.78.09 2.56-.42-.02-.79.03-1.12.11.33 1.59-.44 4.47-.85 5.7.62.46.6.92.32 1.82.23.35.47 1.77.35 2.72-.55.69-.28 2.8-.56 3.87 18.33-4.76 84.08 7.48 95.31 10.66.81.14 1.69.63 2.07 0Z\" style=\"fill-rule:evenodd\"></path><path d=\"m16.8 15.14 4.78-9.17 1.6.21 2.28 10.09-1.55-.2-1.89-8.97.4.05-4.15 8.18-1.46-.19Zm2.39-2.42.15-1.15 4.6.6-.15 1.15zM26.77 16.44l1.25-9.63 1.66.22 4.13 9.08-.6.66 1.19-9.12 1.35.18-1.25 9.63-1.59-.21-4.18-9.15.55-.4-1.16 8.93-1.35-.18ZM36.8 17.74l1.25-9.63 1.66.22 4.13 9.08-.6.66 1.19-9.12 1.35.18-1.25 9.63-1.59-.21-4.18-9.15.55-.4-1.16 8.93-1.35-.18ZM50.8 19.7c-.9-.12-1.67-.43-2.29-.93s-1.08-1.15-1.36-1.94-.36-1.68-.23-2.67.43-1.84.91-2.52c.47-.69 1.08-1.2 1.81-1.52s1.55-.43 2.45-.31 1.68.43 2.3.93 1.07 1.15 1.35 1.94.36 1.68.23 2.67-.43 1.82-.9 2.52c-.48.69-1.08 1.2-1.81 1.53s-1.55.43-2.46.31Zm.16-1.24q.975.12 1.71-.24c.49-.24.89-.63 1.2-1.15s.51-1.17.61-1.92.07-1.43-.1-2.02c-.16-.59-.45-1.06-.87-1.42-.41-.36-.94-.58-1.59-.67s-1.22 0-1.71.24-.89.63-1.2 1.15c-.31.53-.51 1.17-.61 1.92s-.07 1.43.1 2.02c.16.59.45 1.06.87 1.42.41.36.94.58 1.59.67M57.11 20.38l1.25-9.63 1.66.22 4.13 9.08-.6.66 1.19-9.12 1.35.18-1.25 9.63-1.59-.21-4.18-9.15.55-.4-1.16 8.93-1.35-.18ZM70.09 22.21c-.71-.09-1.32-.31-1.82-.64s-.87-.76-1.11-1.28-.31-1.1-.24-1.74l1.41.18c-.06.59.08 1.09.42 1.52.34.42.85.68 1.55.77.6.08 1.11 0 1.53-.22.42-.23.66-.57.72-1.04.04-.34-.02-.62-.19-.85s-.41-.43-.72-.59-.65-.32-1.02-.47-.75-.3-1.11-.47c-.37-.17-.7-.37-1-.6s-.53-.51-.68-.84c-.16-.33-.2-.73-.14-1.21.07-.57.28-1.04.62-1.43s.79-.67 1.33-.85 1.14-.22 1.8-.13 1.24.29 1.71.6.81.71 1.03 1.2.31 1.04.24 1.65l-1.41-.18c.06-.55-.07-1.01-.4-1.39s-.8-.61-1.42-.69c-.56-.07-1.02 0-1.39.22s-.58.54-.64.97c-.04.33.02.6.19.82s.41.41.72.58.65.32 1.02.47.75.31 1.12.48.71.38 1.01.61.53.52.68.86.2.75.14 1.24c-.08.58-.29 1.08-.65 1.48s-.82.69-1.39.87-1.2.22-1.91.13ZM75.42 22.77l1.25-9.63 6.67.87-.16 1.22-5.22-.68-.37 2.82 4.77.62-.16 1.22-4.77-.62-.41 3.16 5.29.69-.16 1.22-6.74-.88Z\" fill=\"#fff\"></path></g></svg></a></li></ul></section><section class=\"_sections_y9n8e_19\"><h3 class=\"_title_y9n8e_59 font-weight-semi-bold label-secondary label-small text-transform-uppercase\">Innhold</h3><ul><li class=\"_section_y9n8e_7\"><a class=\"_link_y9n8e_1\" href=\"https://www.vg.no/nyheter\"><h4 class=\"_name_y9n8e_68 font-weight-semi-bold title-large\">Nyheter</h4></a><button class=\"_button_6bkpv_2 button-label-large _toggle_y9n8e_63\" role=\"button\" type=\"button\"><svg aria-label=\"Chevron Down\" fill=\"none\" height=\"24px\" role=\"graphics-symbol\" style=\"flex-shrink:0;height:var(--icon-size, var(--space-l));width:auto\" viewbox=\"0 0 24 24\" width=\"24px\" xmlns=\"http://www.w3.org/2000/svg\"><path d=\"M19.9257 8.76641C20.0246 8.86527 20.0245 9.02589 19.9257 9.12481C17.4604 11.5901 14.9948 14.0553 12.5302 16.5213C12.2373 16.8143 11.7626 16.8142 11.4697 16.5213L4.07417 9.12579C3.97545 9.0269 3.97543 8.86626 4.07417 8.76739L5.50874 7.33379C5.60765 7.23488 5.76823 7.23488 5.86714 7.33379L11.8212 13.2879C11.92 13.3861 12.0799 13.3862 12.1787 13.2879L18.1337 7.33282C18.2327 7.23406 18.3933 7.23396 18.4921 7.33282L19.9257 8.76641Z\" fill=\"var(--icon-color, currentColor)\"></path></svg></button><ul class=\"_subsections_y9n8e_34\" hidden=\"\"><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://www.vg.no/tag/invasjonen-av-ukraina\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Krigen i Ukraina</h5></a></li><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://www.vg.no/tag/israel-palestina\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Israel og Palestina</h5></a></li><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://www.vg.no/spesial/oversikt\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Spesialer</h5></a></li><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://www.vg.no/spesial/skattelister\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Skattelister</h5></a></li><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://www.vg.no/valg/norge/2025/resultater/st\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Valgresultater 2025</h5></a></li></ul></li><li class=\"_section_y9n8e_7\"><a class=\"_link_y9n8e_1\" href=\"https://www.vg.no/sport\"><h4 class=\"_name_y9n8e_68 font-weight-semi-bold title-large\">Sport</h4></a><button class=\"_button_6bkpv_2 button-label-large _toggle_y9n8e_63\" role=\"button\" type=\"button\"><svg aria-label=\"Chevron Down\" fill=\"none\" height=\"24px\" role=\"graphics-symbol\" style=\"flex-shrink:0;height:var(--icon-size, var(--space-l));width:auto\" viewbox=\"0 0 24 24\" width=\"24px\" xmlns=\"http://www.w3.org/2000/svg\"><path d=\"M19.9257 8.76641C20.0246 8.86527 20.0245 9.02589 19.9257 9.12481C17.4604 11.5901 14.9948 14.0553 12.5302 16.5213C12.2373 16.8143 11.7626 16.8142 11.4697 16.5213L4.07417 9.12579C3.97545 9.0269 3.97543 8.86626 4.07417 8.76739L5.50874 7.33379C5.60765 7.23488 5.76823 7.23488 5.86714 7.33379L11.8212 13.2879C11.92 13.3861 12.0799 13.3862 12.1787 13.2879L18.1337 7.33282C18.2327 7.23406 18.3933 7.23396 18.4921 7.33282L19.9257 8.76641Z\" fill=\"var(--icon-color, currentColor)\"></path></svg></button><ul class=\"_subsections_y9n8e_34\" hidden=\"\"><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://vglive.vg.no\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">VG Live</h5></a></li><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://vglive.vg.no/profeten/kamper\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Profeten</h5></a></li><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://tvguide.vg.no/sport\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Sportskalender</h5></a></li><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://www.vg.no/tag/fotball\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Fotball</h5></a></li><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://www.vg.no/tag/friidrett\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Friidrett</h5></a></li><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://www.travguiden.no\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Travguiden.no<span class=\"_badge_3dicf_1 label-small\">Annonsørinnhold</span></h5></a></li><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://www.vg.no/tag/golf\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Golf</h5></a></li><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://www.vg.no/tag/motorsport\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Motorsport</h5></a></li><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://www.vg.no/tag/tennis\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Tennis</h5></a></li><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://www.vg.no/tag/vintersport\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Vintersport</h5></a></li><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://tv.vg.no/kategori/3/sport\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Direktesendinger</h5></a></li></ul></li><li class=\"_section_y9n8e_7\"><a class=\"_link_y9n8e_1\" href=\"https://www.vg.no/rampelys\"><h4 class=\"_name_y9n8e_68 font-weight-semi-bold title-large\">Rampelys</h4></a><button class=\"_button_6bkpv_2 button-label-large _toggle_y9n8e_63\" role=\"button\" type=\"button\"><svg aria-label=\"Chevron Down\" fill=\"none\" height=\"24px\" role=\"graphics-symbol\" style=\"flex-shrink:0;height:var(--icon-size, var(--space-l));width:auto\" viewbox=\"0 0 24 24\" width=\"24px\" xmlns=\"http://www.w3.org/2000/svg\"><path d=\"M19.9257 8.76641C20.0246 8.86527 20.0245 9.02589 19.9257 9.12481C17.4604 11.5901 14.9948 14.0553 12.5302 16.5213C12.2373 16.8143 11.7626 16.8142 11.4697 16.5213L4.07417 9.12579C3.97545 9.0269 3.97543 8.86626 4.07417 8.76739L5.50874 7.33379C5.60765 7.23488 5.76823 7.23488 5.86714 7.33379L11.8212 13.2879C11.92 13.3861 12.0799 13.3862 12.1787 13.2879L18.1337 7.33282C18.2327 7.23406 18.3933 7.23396 18.4921 7.33282L19.9257 8.76641Z\" fill=\"var(--icon-color, currentColor)\"></path></svg></button><ul class=\"_subsections_y9n8e_34\" hidden=\"\"><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://www.vg.no/tag/film\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Film</h5></a></li><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://www.vg.no/tag/bok\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Bok</h5></a></li><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://www.vg.no/tag/musikk\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Musikk</h5></a></li><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://www.tek.no/gaming\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Spill</h5></a></li><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://www.vg.no/tag/tv\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">TV</h5></a></li></ul></li><li class=\"_section_y9n8e_7\"><a class=\"_link_y9n8e_1\" href=\"https://www.vg.no/meninger\"><h4 class=\"_name_y9n8e_68 font-weight-semi-bold title-large\">Meninger</h4></a></li><li class=\"_section_y9n8e_7\"><a class=\"_link_y9n8e_1\" href=\"https://www.vg.no/forbruker\"><h4 class=\"_name_y9n8e_68 font-weight-semi-bold title-large\">Forbruker</h4></a><button class=\"_button_6bkpv_2 button-label-large _toggle_y9n8e_63\" role=\"button\" type=\"button\"><svg aria-label=\"Chevron Down\" fill=\"none\" height=\"24px\" role=\"graphics-symbol\" style=\"flex-shrink:0;height:var(--icon-size, var(--space-l));width:auto\" viewbox=\"0 0 24 24\" width=\"24px\" xmlns=\"http://www.w3.org/2000/svg\"><path d=\"M19.9257 8.76641C20.0246 8.86527 20.0245 9.02589 19.9257 9.12481C17.4604 11.5901 14.9948 14.0553 12.5302 16.5213C12.2373 16.8143 11.7626 16.8142 11.4697 16.5213L4.07417 9.12579C3.97545 9.0269 3.97543 8.86626 4.07417 8.76739L5.50874 7.33379C5.60765 7.23488 5.76823 7.23488 5.86714 7.33379L11.8212 13.2879C11.92 13.3861 12.0799 13.3862 12.1787 13.2879L18.1337 7.33282C18.2327 7.23406 18.3933 7.23396 18.4921 7.33282L19.9257 8.76641Z\" fill=\"var(--icon-color, currentColor)\"></path></svg></button><ul class=\"_subsections_y9n8e_34\" hidden=\"\"><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://www.vg.no/tag/bil\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Bil</h5></a></li><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://www.vg.no/helse\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Helse</h5></a></li><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://www.vg.no/tag/livsstil\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Livsstil</h5></a></li><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://www.vg.no/tag/mat-og-drikke\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Mat og drikke</h5></a></li><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://www.vg.no/tag/vintips\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Vin</h5></a></li><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://www.vg.no/vin\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Vinguiden</h5></a></li><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://www.vg.no/tag/reise\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Reise</h5></a></li><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://www.vg.no/tag/teknologi\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Teknologi</h5></a></li></ul></li><li class=\"_section_y9n8e_7\"><a class=\"_link_y9n8e_1\" href=\"https://www.vg.no/pluss\"><h4 class=\"_name_y9n8e_68 font-weight-semi-bold title-large\">VG+</h4></a></li><li class=\"_section_y9n8e_7\"><a class=\"_link_y9n8e_1\" href=\"https://tv.vg.no\"><h4 class=\"_name_y9n8e_68 font-weight-semi-bold title-large\">VGTV</h4></a><button class=\"_button_6bkpv_2 button-label-large _toggle_y9n8e_63\" role=\"button\" type=\"button\"><svg aria-label=\"Chevron Down\" fill=\"none\" height=\"24px\" role=\"graphics-symbol\" style=\"flex-shrink:0;height:var(--icon-size, var(--space-l));width:auto\" viewbox=\"0 0 24 24\" width=\"24px\" xmlns=\"http://www.w3.org/2000/svg\"><path d=\"M19.9257 8.76641C20.0246 8.86527 20.0245 9.02589 19.9257 9.12481C17.4604 11.5901 14.9948 14.0553 12.5302 16.5213C12.2373 16.8143 11.7626 16.8142 11.4697 16.5213L4.07417 9.12579C3.97545 9.0269 3.97543 8.86626 4.07417 8.76739L5.50874 7.33379C5.60765 7.23488 5.76823 7.23488 5.86714 7.33379L11.8212 13.2879C11.92 13.3861 12.0799 13.3862 12.1787 13.2879L18.1337 7.33282C18.2327 7.23406 18.3933 7.23396 18.4921 7.33282L19.9257 8.76641Z\" fill=\"var(--icon-color, currentColor)\"></path></svg></button><ul class=\"_subsections_y9n8e_34\" hidden=\"\"><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://tv.vg.no/kategori/100324/underholdning\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Underholdning</h5></a></li><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://tv.vg.no/kategori/121/dokumentar\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Dokumentar</h5></a></li><li class=\"_subsection_y9n8e_24\"><a class=\"_link_y9n8e_1\" href=\"https://tv.vg.no/live-sport\"><h5 class=\"_name_y9n8e_68 font-weight-regular title-small\">Live sport</h5></a></li></ul></li></ul></section><div class=\"_footer_2fpqs_1\"><nav class=\"_section_2fpqs_19\"><h3 class=\"_title_2fpqs_31 title-large\">Annet innhold</h3><ul class=\"_subsection_2fpqs_25\"><li><a href=\"https://www.vg.no/podkast\"><h2 class=\"_link_2fpqs_8 label-medium\">Podkast</h2></a></li><li><a href=\"https://www.vg.no/spill/ordstjernen\"><h2 class=\"_link_2fpqs_8 label-medium\">Ordstjernen</h2></a></li><li><a href=\"https://e24.no\"><h2 class=\"_link_2fpqs_8 label-medium\">E24</h2></a></li><li><a href=\"https://www.minmote.no\"><h2 class=\"_link_2fpqs_8 label-medium\">MinMote</h2></a></li><li><a href=\"https://www.godt.no\"><h2 class=\"_link_2fpqs_8 label-medium\">Godt</h2></a></li><li><a href=\"https://pent.no\"><h2 class=\"_link_2fpqs_8 label-medium\">Pent</h2></a></li><li><a href=\"https://www.tek.no\"><h2 class=\"_link_2fpqs_8 label-medium\">Tek.no</h2></a></li><li><a href=\"https://www.vg.no/dinepenger\"><h2 class=\"_link_2fpqs_8 label-medium\">Dine Penger</h2></a></li><li><a href=\"https://www.vg.no/spesial/2025/pollen/\"><h2 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label-medium\">Bunadssko.no</h2></a></li></ul></nav><nav class=\"_section_2fpqs_19\"><h3 class=\"_title_2fpqs_31 title-large\">Info og kontakt</h3><ul class=\"_subsection_2fpqs_25\"><li><a href=\"https://www.vg.no/tips-oss\"><h2 class=\"_link_2fpqs_8 label-medium\">Tips oss</h2></a></li><li><a href=\"https://www.vg.no/informasjon/kontakt-oss\"><h2 class=\"_link_2fpqs_8 label-medium\">Kontakt VG</h2></a></li><li><a href=\"https://www.vg.no/informasjon\"><h2 class=\"_link_2fpqs_8 label-medium\">Informasjon</h2></a></li></ul></nav></div></div></nav></header><!--astro:end--></astro-island>  <push-banner data-allowed-subscriptions=\"11\" data-color-scheme=\"dark\" data-enable-fetch=\"true\" data-eventhub-token=\"eyJhbGciOiJIUzI1NiIsInR5cCI6IkpXVCJ9.eyJyZWFkIjpbInZnL3dlYi1wdXNoL3Byb2R1Y3Rpb24vIyJdfQ.-f-lLmTnCb1y-57cGnTbBEki9lEkvJ_6O4Qhn_DF-ik\" data-hide-after=\"8\" data-max-age-minutes=\"2\"></push-banner>  <div class=\"schibsted-data-controller\" data-nosnippet></div> <section id=\"hovedinnhold\" tabindex=\"-1\"></section>   <main class=\"article-main\" data-astro-cid-jwirc66j data-horseshoe=\"true\" data-topbanner=\"false\" data-topboard=\"true\" id=\"application\"> <div class=\"advertory-vg-skyscraperleft_1-wrapper__article\"><div class=\"advertory-vg-skyscraperleft_1__article\" id=\"skyscraperleft_1\"></div></div><div class=\"advertory-vg-topboard-wrapper__article\"><div class=\"advertory-vg-topboard__article\" id=\"topboard\"></div></div><div data-placement-format=\"sponsorstripe\"><div id=\"sponsorstripe\"></div></div>  <article class=\"article default\" data-astro-cid-jwirc66j> <header class=\"article-intro\" style=\"display: contents\"> <h1 class=\"_title_kfomj_1 _wide_kfomj_54 _small_kfomj_32 title-serif-m layout-component layout-wide layout-padded\" first-child=\"false\"><span class=\"_text_kfomj_58\">Får ikke prøve banebrytende medisin: –⁠ Systemet er umenneskelig</span></h1><p class=\"_lead_o9xde_2 _lead_xtcu6_50 layout-component text-serif-m layout-normal text-serif-l layout-component layout-wide layout-padded _wide_17hqh_1 layout-padded\">Ny forskning gir ALS-pasienter håp. Men alvorlig syke Kirsten og Kjartan får nei til å prøve. </p><astro-island await-children client=\"visible\" component-export=\"Image\" component-url=\"https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/Image.r_XTj6LO.js\" opts=\"{&quot;name&quot;:&quot;Image&quot;,&quot;value&quot;:true}\" prefix=\"r123\" props=\"{&quot;alt&quot;:[0],&quot;caption&quot;:[0,&quot; Foto: Line Møller / 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https://akamai.vgc.no/v2/images/7db5dd3a-a54c-4b98-83ad-a82730f1e3b2?format=auto&amp;w=1440&amp;s=204de3f83c828fc10334f54b9c5a11764937d674 1440w, https://akamai.vgc.no/v2/images/7db5dd3a-a54c-4b98-83ad-a82730f1e3b2?format=auto&amp;w=2160&amp;s=c5f95a82b4dd7801a35b068c1e75bd11f6968690 2160w\" style=\"object-position:56.17126937984496% 44.46765988372093%\" width=\"8256\"><figcaption class=\"text-sans-s _caption_qp4xg_10 layout-component layout-padded\"> Foto: Line Møller / VG</figcaption></figure><!--astro:end--></astro-island><section class=\"text-sans-s _byline_ntbth_1 layout-component layout-normal layout-padded\" data-expanded-class=\"_expanded_ntbth_56\" data-test-id=\"byline\" id=\"vg-byline-container\"><div class=\"_imageWrapper_ntbth_107\"><ul aria-hidden=\"true\" class=\"_images_ntbth_112\"><li><a class=\"_link_ntbth_117\" href=\"/forfatter/anne-stine-saether\" style=\"z-index:2\" title=\"Anne Stine Sæther\"><figure class=\"_figure_ntbth_66\"><img alt=\"Bilde av Anne Stine Sæther\" class=\"_image_ntbth_93\" decoding=\"async\" fetchpriority=\"low\" itemprop=\"image\" loading=\"lazy\" sizes=\"80px\" src=\"https://akamai.vgc.no/v2/images/a12ab6a4-7bca-4b06-b64c-34e74613856a?format=auto&amp;w=40&amp;s=f8d16e7ef3ec0ec9f931b2dbe1a23be483d89640\" srcset=\"https://akamai.vgc.no/v2/images/a12ab6a4-7bca-4b06-b64c-34e74613856a?format=auto&amp;w=40&amp;s=f8d16e7ef3ec0ec9f931b2dbe1a23be483d89640 40w, https://akamai.vgc.no/v2/images/a12ab6a4-7bca-4b06-b64c-34e74613856a?format=auto&amp;w=80&amp;s=9d22a83ef703344a3353fd5bd874293f139f299c 80w, https://akamai.vgc.no/v2/images/a12ab6a4-7bca-4b06-b64c-34e74613856a?format=auto&amp;w=100&amp;s=da952304cc3aa42690231028f31a6ef99710a727 100w, https://akamai.vgc.no/v2/images/a12ab6a4-7bca-4b06-b64c-34e74613856a?format=auto&amp;w=200&amp;s=514eb8fec7f08af53d42342265f3dc9b864975cb 200w, https://akamai.vgc.no/v2/images/a12ab6a4-7bca-4b06-b64c-34e74613856a?format=auto&amp;w=240&amp;s=69d03ae02564ca9eedce46080e7a6c56a971d802 240w, https://akamai.vgc.no/v2/images/a12ab6a4-7bca-4b06-b64c-34e74613856a?format=auto&amp;w=480&amp;s=9620feb0d996498e5e88c0e02c5d394c4e700f7d 480w\" width=\"480\"></figure></a></li><li><a class=\"_link_ntbth_117\" href=\"/forfatter/line-moeller-foto-2\" style=\"z-index:1\" title=\"Line Møller (foto)\"><figure class=\"_figure_ntbth_66\"><img alt=\"Bilde av Line Møller (foto)\" class=\"_image_ntbth_93\" decoding=\"async\" fetchpriority=\"low\" itemprop=\"image\" loading=\"lazy\" sizes=\"80px\" src=\"https://akamai.vgc.no/v2/images/86bd1337-52af-4a28-b881-46e1ce6a48f1?format=auto&amp;w=40&amp;s=bbf6a861fe698c4e5fe5452d7312ec9bdd9c0aee\" srcset=\"https://akamai.vgc.no/v2/images/86bd1337-52af-4a28-b881-46e1ce6a48f1?format=auto&amp;w=40&amp;s=bbf6a861fe698c4e5fe5452d7312ec9bdd9c0aee 40w, https://akamai.vgc.no/v2/images/86bd1337-52af-4a28-b881-46e1ce6a48f1?format=auto&amp;w=80&amp;s=ddac0b5eda04546d526ee137f49f5d80ec0c063f 80w, https://akamai.vgc.no/v2/images/86bd1337-52af-4a28-b881-46e1ce6a48f1?format=auto&amp;w=100&amp;s=faa3ad28612f7197682572cdf6e332e5b5ac7a09 100w, https://akamai.vgc.no/v2/images/86bd1337-52af-4a28-b881-46e1ce6a48f1?format=auto&amp;w=200&amp;s=a57edc31127f9fa120a6eeb0dd4019a41eebb54a 200w, https://akamai.vgc.no/v2/images/86bd1337-52af-4a28-b881-46e1ce6a48f1?format=auto&amp;w=240&amp;s=a045f674d3b2a3af2f2d0fb21b157b094410b3e0 240w, https://akamai.vgc.no/v2/images/86bd1337-52af-4a28-b881-46e1ce6a48f1?format=auto&amp;w=480&amp;s=712bdbcba5eec2b1bff0215d1d52004f67a759b7 480w\" width=\"480\"></figure></a></li></ul><button class=\"vg-byline-toggle _showMoreImage_ntbth_45 _hideShowMoreImage_ntbth_123\"><svg aria-label=\"Plus\" fill=\"none\" height=\"24px\" role=\"graphics-symbol\" style=\"flex-shrink:0;height:var(--icon-size, var(--space-l));width:auto\" viewbox=\"0 0 24 24\" width=\"24px\" xmlns=\"http://www.w3.org/2000/svg\"><path d=\"M8.53978 9.4287C9.03072 9.4287 9.4287 9.03072 9.4287 8.53978V2.88892C9.4287 2.39799 9.82669 2 10.3176 2H13.6824C14.1733 2 14.5713 2.39798 14.5713 2.88892V8.53978C14.5713 9.03072 14.9693 9.4287 15.4602 9.4287H21.1111C21.602 9.4287 22 9.82669 22 10.3176V13.6824C22 14.1733 21.602 14.5713 21.1111 14.5713H15.4602C14.9693 14.5713 14.5713 14.9693 14.5713 15.4602V21.1111C14.5713 21.602 14.1733 22 13.6824 22H10.3176C9.82669 22 9.4287 21.602 9.4287 21.1111V15.4602C9.4287 14.9693 9.03072 14.5713 8.53978 14.5713H2.88893C2.39799 14.5713 2 14.1733 2 13.6824L2 10.3176C2 9.82669 2.39798 9.4287 2.88892 9.4287H8.53978Z\" fill=\"var(--icon-color, currentColor)\"></path></svg></button></div><ul class=\"_names_ntbth_163\" data-expanded-class=\"_expanded_ntbth_56\" id=\"vg-byline\"><li class=\"text-sans-s _name_ntbth_131\"><a class=\"_link_ntbth_117\" href=\"/forfatter/anne-stine-saether\">Anne Stine Sæther</a></li><li class=\"text-sans-s _name_ntbth_131\"><a class=\"_link_ntbth_117\" href=\"/forfatter/line-moeller-foto-2\">Line Møller (foto)</a></li></ul><span class=\"text-sans-s _dateline_ntbth_31\">Rapporterer fra Oslo</span></section> <friendly-timestamp data-options=\"{&quot;showUpdated&quot;:true}\" style=\"display:contents\"><time class=\"text-sans-s _timestamp_ktvrt_1 _friendly_ktvrt_17 layout-component layout-normal layout-padded\" datetime=\"2026-01-25T08:57:55.000Z\"><span data-nosnippet=\"true\">Oppdatert søndag 25. januar kl. 09:57</span></time></friendly-timestamp> <div class=\"advertory-vg-netboard-wrapper__article\"><div class=\"advertory-vg-netboard__article\" id=\"netboard_1\"></div></div> </header>  <section class=\"article-body\" itemprop=\"articleBody\" style=\"display: contents\"> <div class=\"layout-component layout-padded layout-normal _tts_1njly_1\" data-track-id=\"tts:35336\" data-track-impression data-track-name=\"Får ikke prøve banebrytende medisin: – Systemet er umenneskelig\" data-track-target-newsroom=\"vgtts\"><astro-island await-children client=\"load\" component-export=\"TTSPlayer\" component-url=\"https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/video.ayTqLdUa.js\" opts=\"{&quot;name&quot;:&quot;TTSPlayer&quot;,&quot;value&quot;:true}\" prefix=\"r216\" props=\"{&quot;assetId&quot;:[0,35336],&quot;vendor&quot;:[0,&quot;vgtts&quot;],&quot;isApp&quot;:[0,false]}\" renderer-url=\"https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/client.B4ukvwq6.js\" ssr uid=\"1JodWp\"><div class=\"_svpContainer_1nwbk_1\"><div id=\"svp-video-35336-«r216R0»\"></div></div><div class=\"_perspective_1nwbk_11\"><div class=\"_controls_1nwbk_16\"><div class=\"_initial_1nwbk_33\"><button aria-disabled=\"true\" aria-label=\"Laster inn lytt til saken avspiller\" class=\"_button_6bkpv_2 button-label-large _filled_6bkpv_106 _play_10x2h_9 _button_10x2h_1\" data-track-click-intent=\"Attempt\" data-track-element-type=\"Play Button Disabled\" role=\"button\" type=\"button\"><svg aria-label=\"Play\" fill=\"none\" height=\"24px\" role=\"graphics-symbol\" style=\"flex-shrink:0;height:var(--icon-size, var(--space-l));width:auto\" viewbox=\"0 0 24 24\" width=\"24px\" xmlns=\"http://www.w3.org/2000/svg\"><path d=\"M10.4232 2.32693L18.614 11.3269C18.9613 11.7085 18.9613 12.2915 18.614 12.6731L10.4232 21.6731C10.2337 21.8813 9.9652 22 9.68364 22H7.12555C6.57325 22 6.12552 21.5523 6.12552 21L6.12552 3.00003C6.12552 2.44773 6.57325 2 7.12555 2L9.68364 2C9.9652 2 10.2337 2.1187 10.4232 2.32693Z\" fill=\"var(--icon-color, currentColor)\"></path></svg></button><p aria-hidden=\"true\" class=\"_introduction_17m6h_13\">Lytt til saken</p><p class=\"_srOnly_17m6h_1\"></p></div></div></div><!--astro:end--></astro-island></div> <astro-island await-children client=\"idle\" component-export=\"ArticleSummary\" component-url=\"https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/ArticleSummary.DJkigjDt.js\" opts=\"{&quot;name&quot;:&quot;ArticleSummary&quot;,&quot;value&quot;:true}\" prefix=\"r21\" props=\"{&quot;articleSummary&quot;:[1,[[0,{&quot;items&quot;:[1,[[0,{&quot;value&quot;:[0,&quot;En lovende ny medisin for ALS testes i Norge, men alvorlig syke Kirsten og Kjartan får ikke delta.&quot;],&quot;markup&quot;:[1,[]]}],[0,{&quot;value&quot;:[0,&quot;Medisinen ILB viser lovende resultater i Sverige og England, men er ikke godkjent for bruk utenfor studieoppsettet.&quot;],&quot;markup&quot;:[1,[]]}],[0,{&quot;value&quot;:[0,&quot;Familien til pasientene uttrykker frustrasjon over avslagene, som de mener tar fra dem et siste håp.&quot;],&quot;markup&quot;:[1,[]]}]]],&quot;blockType&quot;:[0,&quot;list:unordered&quot;]}]]],&quot;type&quot;:[0,&quot;news&quot;],&quot;introType&quot;:[0]}\" renderer-url=\"https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/client.B4ukvwq6.js\" ssr uid=\"ZhTKpj\"><div class=\"_summary_64s2r_1 layout-component layout-normal layout-padded\" data-theme=\"accent\"><track-element data-track-element-type=\"Article Summary\" data-track-id=\"article-summary\" data-track-impression=\"\" data-track-name=\"Article Summary\"><section aria-expanded=\"false\" aria-label=\"Utvid\" class=\"_box_1mfx9_1 font-vg-sans layout-component layout-normal _box_64s2r_31\" id=\"«r21R0»\" role=\"region\" style=\"max-height:var(--height)\"><div class=\"_titleContainer_64s2r_44\"><h2 class=\"title-serif-s _title_64s2r_44\">Kortversjonen</h2><button aria-label=\"Vis informasjon\" class=\"_button_6bkpv_2 button-label-large _button_64s2r_20\" data-track-id=\"article-summary-disclaimer\" data-track-name=\"Article Summary Disclaimer\" role=\"button\" type=\"button\"><svg aria-label=\"Ai\" fill=\"none\" height=\"24px\" role=\"graphics-symbol\" style=\"flex-shrink:0;height:var(--icon-size, var(--space-l));width:auto\" viewbox=\"0 0 24 24\" width=\"24px\" xmlns=\"http://www.w3.org/2000/svg\"><path d=\"M12.4244 11.4646L17.3 13.2687V15.3201L12.4244 17.1242L10.6202 22H8.56907L6.76485 17.1242L2 15.361V13.2278L6.76485 11.4646L8.52796 6.69995H10.6613L12.4244 11.4646Z\" fill=\"var(--icon-color, currentColor)\"></path><path d=\"M19.6103 4.33579L22 5.22004V6.22577L19.6103 7.11012L18.7259 9.50008H17.7203L16.8359 7.11012L14.5 6.24569V5.20012L16.8359 4.33579L17.7003 2.00003H18.7459L19.6103 4.33579Z\" fill=\"var(--icon-color, currentColor)\"></path></svg></button></div><div class=\"_disclaimer_64s2r_50\" hidden=\"\"><span class=\"_text_64s2r_64\" data-nosnippet=\"true\">Oppsummeringen er laget med kunstig intelligens og<!-- --> <a href=\"https://www.vg.no/informasjon/redaksjonelle-avgjorelser/183\">kvalitetssikret av VGs journalister.</a></span></div><ul class=\"_list_o9xde_3 _list_64s2r_85 _unordered_o9xde_106 text-sans-m\"><li class=\"_item_o9xde_30\">En lovende ny medisin for ALS testes i Norge, men alvorlig syke Kirsten og Kjartan får ikke delta.</li><li class=\"_item_o9xde_30\">Medisinen ILB viser lovende resultater i Sverige og England, men er ikke godkjent for bruk utenfor studieoppsettet.</li><li class=\"_item_o9xde_30\">Familien til pasientene uttrykker frustrasjon over avslagene, som de mener tar fra dem et siste håp.</li></ul><button aria-controls=\"«r21R0»\" class=\"_button_6bkpv_2 button-label-large _hug_6bkpv_81 _filled_6bkpv_106 _button_1mfx9_76\" role=\"button\" type=\"button\"><span>Vis <!-- -->mer</span></button></section></track-element></div><!--astro:end--></astro-island> <p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">Den nye medisinen som nå skal testes ut på ALS-syke i Norge er resultatet av et samarbeid mellom Universitetssykehuset i Göteborg og Queen Elizabeth Hospital i Birmingham i England. </p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\"><strong class=\"_strong_o9xde_25\">Den lovende medisinen har fått navnet ILB.</strong></p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">– For meg er det ingen risiko ved å prøve disse medisinene. Jeg skal uansett dø, sier Kirsten Jacobsen (63). </p><astro-island await-children client=\"visible\" component-export=\"Image\" component-url=\"https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/Image.r_XTj6LO.js\" opts=\"{&quot;name&quot;:&quot;Image&quot;,&quot;value&quot;:true}\" prefix=\"r131\" props=\"{&quot;alt&quot;:[0],&quot;caption&quot;:[0,&quot;Foto: Line Møller / VG&quot;],&quot;device&quot;:[0],&quot;editorialJudgment&quot;:[0],&quot;imageAsset&quot;:[0,{&quot;id&quot;:[0,&quot;459ec6fa-5b67-461e-a6e5-38d1a49bd427&quot;],&quot;size&quot;:[0,{&quot;width&quot;:[0,5379],&quot;height&quot;:[0,4034]}],&quot;urls&quot;:[1,[[0,{&quot;height&quot;:[0,30],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=40&amp;s=6bd5910081f204a54d43b6c62773beacc8853bf8&quot;],&quot;width&quot;:[0,40]}],[0,{&quot;height&quot;:[0,60],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=80&amp;s=729ed332ee0bb060f1fe37b6dd31595fa27acc08&quot;],&quot;width&quot;:[0,80]}],[0,{&quot;height&quot;:[0,75],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=100&amp;s=3ff7b70012dfcda2608eb83100f2bbe586269e70&quot;],&quot;width&quot;:[0,100]}],[0,{&quot;height&quot;:[0,150],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=200&amp;s=0bf255d9fce94e47d2f2f68106f99add2b62667d&quot;],&quot;width&quot;:[0,200]}],[0,{&quot;height&quot;:[0,180],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=240&amp;s=27a6954c2c7c304cf5ecb9a60ef81c6be7bc3cfb&quot;],&quot;width&quot;:[0,240]}],[0,{&quot;height&quot;:[0,360],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=480&amp;s=f7faeb5a071bd7f215b3ce7e94f5536b15618af0&quot;],&quot;width&quot;:[0,480]}],[0,{&quot;height&quot;:[0,435],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=580&amp;s=668f067b66bc64c1dc42ab78b651f6c66f3cd470&quot;],&quot;width&quot;:[0,580]}],[0,{&quot;height&quot;:[0,540],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=720&amp;s=90bbefa4a74dbbcf2a86d2d2d5a04a8aa203a3b2&quot;],&quot;width&quot;:[0,720]}],[0,{&quot;height&quot;:[0,810],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=1080&amp;s=6e51e25ddd8e5b761ba9b938d939f4b90c974454&quot;],&quot;width&quot;:[0,1080]}],[0,{&quot;height&quot;:[0,1080],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=1440&amp;s=ab5de627680ff5190c19e7f2217e7cc868e1dd73&quot;],&quot;width&quot;:[0,1440]}],[0,{&quot;height&quot;:[0,1620],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=2160&amp;s=52be0d9919843bca11ded7e78f48ffdc56898cbc&quot;],&quot;width&quot;:[0,2160]}]]]}],&quot;layout&quot;:[0],&quot;marginBottom&quot;:[0],&quot;padded&quot;:[0],&quot;type&quot;:[0,&quot;news&quot;]}\" renderer-url=\"https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/client.B4ukvwq6.js\" ssr uid=\"1itm9w\"><figure class=\"_figure_qp4xg_1 layout-component layout-normal\"><img alt=\"Foto: Line Møller / VG\" class=\"_image_qp4xg_65 layout-component layout-normal\" data-fullscreen-sizes=\"(min-width: 1000px) 2000px, 2000vw\" data-track-element-type=\"Article image fullscreen\" data-track-name=\"ImageFullscreen\" decoding=\"async\" height=\"4034\" itemprop=\"image\" loading=\"lazy\" sizes=\"(min-width: 980px) 980px, 100vw\" src=\"https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=40&amp;s=6bd5910081f204a54d43b6c62773beacc8853bf8\" srcset=\"https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=40&amp;s=6bd5910081f204a54d43b6c62773beacc8853bf8 40w, https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=80&amp;s=729ed332ee0bb060f1fe37b6dd31595fa27acc08 80w, https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=100&amp;s=3ff7b70012dfcda2608eb83100f2bbe586269e70 100w, https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=200&amp;s=0bf255d9fce94e47d2f2f68106f99add2b62667d 200w, https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=240&amp;s=27a6954c2c7c304cf5ecb9a60ef81c6be7bc3cfb 240w, https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=480&amp;s=f7faeb5a071bd7f215b3ce7e94f5536b15618af0 480w, https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=580&amp;s=668f067b66bc64c1dc42ab78b651f6c66f3cd470 580w, https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=720&amp;s=90bbefa4a74dbbcf2a86d2d2d5a04a8aa203a3b2 720w, https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=1080&amp;s=6e51e25ddd8e5b761ba9b938d939f4b90c974454 1080w, https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=1440&amp;s=ab5de627680ff5190c19e7f2217e7cc868e1dd73 1440w, https://akamai.vgc.no/v2/images/459ec6fa-5b67-461e-a6e5-38d1a49bd427?format=auto&amp;w=2160&amp;s=52be0d9919843bca11ded7e78f48ffdc56898cbc 2160w\" style=\"object-position:0% 0%\" width=\"5379\"><figcaption class=\"text-sans-s _caption_qp4xg_10 layout-component layout-padded\">Foto: Line Møller / VG</figcaption></figure><!--astro:end--></astro-island><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\"><strong class=\"_strong_o9xde_25\">VG har snakket med to ALS-syke - Kirsten (63) og 52-år gamle Kjartan Børdal Hovgaard. Ingen av dem har fått lov å delta i prosjektet, som ledes av Oslo Universitetssykehus (OUS). </strong></p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">Begge har også søkt om tilgang til medisinen utenom studien og fått avslag, selv om de selv foreslår at de kan betale for behandlingen.</p><div class=\"advertory-vg-netboard-wrapper__article\"><div class=\"advertory-vg-netboard__article\" id=\"netboard_2\"></div></div><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">Det er ca 400 ALS-pasienter i Norge. I studien er det plass til 116 deltakere. </p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">– De som ikke får være med, overlates til ingen behandling og en sikker død. Jeg mener det er uetisk. De burde fått medisinen via <abbr class=\"_explanation_o9xde_140\" tabindex=\"0\" title=\" En tillatelse som kan gis for å bruke en medisin som ikke er godkjent i landet, ofte i tilfeller der det ikke finnes andre behandlingsalternativer.\">godkjenningsfritak<span aria-hidden=\"true\" class=\"text-sans-s _title_o9xde_151\" role=\"presentation\"><span class=\"text-serif-l _word_o9xde_156\">godkjenningsfritak</span> En tillatelse som kan gis for å bruke en medisin som ikke er godkjent i landet, ofte i tilfeller der det ikke finnes andre behandlingsalternativer.</span></abbr>, eller i en egen «forskningsarm.» Er dette forsvarlig, spør Hektor Hovgaard, Kjartans bror.</p><astro-island await-children client=\"visible\" component-export=\"Image\" component-url=\"https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/Image.r_XTj6LO.js\" opts=\"{&quot;name&quot;:&quot;Image&quot;,&quot;value&quot;:true}\" prefix=\"r137\" props=\"{&quot;alt&quot;:[0],&quot;caption&quot;:[0,&quot;Kjartan Børdal Hovgaard (52).  Foto: Privat&quot;],&quot;device&quot;:[0],&quot;editorialJudgment&quot;:[0],&quot;imageAsset&quot;:[0,{&quot;id&quot;:[0,&quot;2aaf6cf8-7da5-44b4-a444-85d8140f8ea3&quot;],&quot;size&quot;:[0,{&quot;width&quot;:[0,2204],&quot;height&quot;:[0,1654]}],&quot;urls&quot;:[1,[[0,{&quot;height&quot;:[0,30],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=40&amp;s=c505a7a8bb108b13168af5ebf699ced3598b78bb&quot;],&quot;width&quot;:[0,40]}],[0,{&quot;height&quot;:[0,60],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=80&amp;s=dcbf6113039f147fc5a83cf9ae582c8a3e327152&quot;],&quot;width&quot;:[0,80]}],[0,{&quot;height&quot;:[0,75],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=100&amp;s=2c8bcbf7c89f0d7742e57ff08212adb170226f59&quot;],&quot;width&quot;:[0,100]}],[0,{&quot;height&quot;:[0,150],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=200&amp;s=bc3282d6f76d3fc1148a36961c7c02551ddcc1d3&quot;],&quot;width&quot;:[0,200]}],[0,{&quot;height&quot;:[0,180],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=240&amp;s=f9812d3f162be4003e24d8bc7dcffe20cd3a237d&quot;],&quot;width&quot;:[0,240]}],[0,{&quot;height&quot;:[0,360],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=480&amp;s=f10b17b5aca1854797e270c41582324a4ae16829&quot;],&quot;width&quot;:[0,480]}],[0,{&quot;height&quot;:[0,435],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=580&amp;s=c1f711210f5386815095e8c454b4996bd8f2bda1&quot;],&quot;width&quot;:[0,580]}],[0,{&quot;height&quot;:[0,540],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=720&amp;s=5f2e3856955e5866e24e5a700e0b5e8196eba724&quot;],&quot;width&quot;:[0,720]}],[0,{&quot;height&quot;:[0,810],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=1080&amp;s=535d03c1ae0d54ccfad83c77d88b60eb784fd98a&quot;],&quot;width&quot;:[0,1080]}],[0,{&quot;height&quot;:[0,1081],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=1440&amp;s=965c40d041abb4b7656214f79c9703baed151466&quot;],&quot;width&quot;:[0,1440]}],[0,{&quot;height&quot;:[0,1621],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=2160&amp;s=312c3e3405bb07940ac0d59ae86bb9189d86f57e&quot;],&quot;width&quot;:[0,2160]}]]]}],&quot;layout&quot;:[0],&quot;marginBottom&quot;:[0],&quot;padded&quot;:[0],&quot;type&quot;:[0,&quot;news&quot;]}\" renderer-url=\"https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/client.B4ukvwq6.js\" ssr uid=\"1svLQA\"><figure class=\"_figure_qp4xg_1 layout-component layout-normal\"><img alt=\"Kjartan Børdal Hovgaard (52).  Foto: Privat\" class=\"_image_qp4xg_65 layout-component layout-normal\" data-fullscreen-sizes=\"(min-width: 1000px) 2000px, 2000vw\" data-track-element-type=\"Article image fullscreen\" data-track-name=\"ImageFullscreen\" decoding=\"async\" height=\"1654\" itemprop=\"image\" loading=\"lazy\" sizes=\"(min-width: 980px) 980px, 100vw\" src=\"https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=40&amp;s=c505a7a8bb108b13168af5ebf699ced3598b78bb\" srcset=\"https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=40&amp;s=c505a7a8bb108b13168af5ebf699ced3598b78bb 40w, https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=80&amp;s=dcbf6113039f147fc5a83cf9ae582c8a3e327152 80w, https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=100&amp;s=2c8bcbf7c89f0d7742e57ff08212adb170226f59 100w, https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=200&amp;s=bc3282d6f76d3fc1148a36961c7c02551ddcc1d3 200w, https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=240&amp;s=f9812d3f162be4003e24d8bc7dcffe20cd3a237d 240w, https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=480&amp;s=f10b17b5aca1854797e270c41582324a4ae16829 480w, https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=580&amp;s=c1f711210f5386815095e8c454b4996bd8f2bda1 580w, https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=720&amp;s=5f2e3856955e5866e24e5a700e0b5e8196eba724 720w, https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=1080&amp;s=535d03c1ae0d54ccfad83c77d88b60eb784fd98a 1080w, https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=1440&amp;s=965c40d041abb4b7656214f79c9703baed151466 1440w, https://akamai.vgc.no/v2/images/2aaf6cf8-7da5-44b4-a444-85d8140f8ea3?format=auto&amp;w=2160&amp;s=312c3e3405bb07940ac0d59ae86bb9189d86f57e 2160w\" style=\"object-position:0% 0%\" width=\"2204\"><figcaption class=\"text-sans-s _caption_qp4xg_10 layout-component layout-padded\">Kjartan Børdal Hovgaard (52).  Foto: Privat</figcaption></figure><!--astro:end--></astro-island><h2 class=\"_heading_o9xde_1 _heading_xtcu6_1 layout-component text-serif-m layout-normal text-serif-m layout-padded\"><strong class=\"_strong_o9xde_25\">Slik foregår studien: </strong></h2><ul class=\"_list_o9xde_3 _list_xtcu6_9 _unordered_o9xde_106 layout-component text-serif-m layout-normal text-serif-m layout-padded\"><li class=\"_item_o9xde_30\">Halvparten av de 116 deltagerne som er med i OUS-prosjektet får medisinen ILB, mens den andre halvdelen får Riluzol, en eksisterende medisin. </li><li class=\"_item_o9xde_30\">Riluzol beskrives som et legemiddel med svært begrenset effekt. Pasientene som deltar i studiet, vet ikke selv hva de får. </li><li class=\"_item_o9xde_30\">Prosjektet samarbeider med <abbr class=\"_explanation_o9xde_140\" tabindex=\"0\" title=\"Samarbeid med\nAkershus universitetssykehus\nHelse Bergen\nHelse Møre og Romsdal\nHelse Stavanger\nNordlandssykehuset\nSørlandet sykehus\nSt. Olavs hospital\nSykehuset i Vestfold\nSykehuset Innlandet\nSykehuset Telemark\nUniversitetssykehuset Nord-Norge\nVestre viken\">sykehus over hele landet<span aria-hidden=\"true\" class=\"text-sans-s _title_o9xde_151\" role=\"presentation\"><span class=\"text-serif-l _word_o9xde_156\">sykehus over hele landet</span>Samarbeid med\nAkershus universitetssykehus\nHelse Bergen\nHelse Møre og Romsdal\nHelse Stavanger\nNordlandssykehuset\nSørlandet sykehus\nSt. Olavs hospital\nSykehuset i Vestfold\nSykehuset Innlandet\nSykehuset Telemark\nUniversitetssykehuset Nord-Norge\nVestre viken</span></abbr>.</li></ul><h2 class=\"_heading_o9xde_1 _heading_xtcu6_1 layout-component text-serif-m layout-normal text-serif-m layout-padded\">– Oppfyller ikke kriteriene for å delta</h2><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">– Vi er veldig lei oss for pasienter vi må si nei til. En stor andel av ALS-pasientene oppfyller ikke kriteriene for å delta i studien. De er kommet for langt i sykdomsforløpet. For å delta må de ha funksjoner som kan måles, sier prosjektleder, overlege Angelina Hatlø Maniaol. </p><div class=\"advertory-vg-netboard-wrapper__article\"><div class=\"advertory-vg-netboard__article\" id=\"netboard_3\"></div></div><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">Hun er <abbr class=\"_explanation_o9xde_140\" tabindex=\"0\" title=\" En lege som er spesialist i sykdommer og lidelser i nervesystemet, inkludert hjernen, ryggmargen og nerver.\">nevrolog <span aria-hidden=\"true\" class=\"text-sans-s _title_o9xde_151\" role=\"presentation\"><span class=\"text-serif-l _word_o9xde_156\">nevrolog </span> En lege som er spesialist i sykdommer og lidelser i nervesystemet, inkludert hjernen, ryggmargen og nerver.</span></abbr>ved Oslo universitetssykehus.</p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">– Vi har et håp som alle andre. Det er å finne en ny behandling, en bremsemedisin som kan forlenge livet. Pasientene blir ikke kurert. Sannsynligheten for det er veldig liten. Det beste utfallet er at vi kan bevise at <abbr class=\"_explanation_o9xde_140\" tabindex=\"0\" title=\"den nye medisinen\">ILB<span aria-hidden=\"true\" class=\"text-sans-s _title_o9xde_151\" role=\"presentation\"><span class=\"text-serif-l _word_o9xde_156\">ILB</span>den nye medisinen</span></abbr> virker og at det kommer flere studier i etterkant av denne som tester nye produkter mot ALS.</p><section class=\"_portrait_ygndg_1 layout-component layout-normal layout-padded\" data-body=\"false\"><figure style=\"display:contents\"><picture class=\"_picture_ygndg_60\"><img alt=\"Bilde av Oslo universitetssykehus.\" class=\"_image_ygndg_42\" height=\"37\" itemprop=\"image\" loading=\"lazy\" sizes=\"480px\" src=\"https://akamai.vgc.no/v2/images/1e5ab4bb-9a85-42c3-acf4-6199c6a246c8?format=auto&amp;w=40&amp;s=bd647799164a501d1dddfb4308d2e9997e58748c\" srcset=\"https://akamai.vgc.no/v2/images/1e5ab4bb-9a85-42c3-acf4-6199c6a246c8?format=auto&amp;w=40&amp;s=bd647799164a501d1dddfb4308d2e9997e58748c 40w, https://akamai.vgc.no/v2/images/1e5ab4bb-9a85-42c3-acf4-6199c6a246c8?format=auto&amp;w=80&amp;s=117da01e2485714b559503f8815c4ea86fae1a3a 80w, https://akamai.vgc.no/v2/images/1e5ab4bb-9a85-42c3-acf4-6199c6a246c8?format=auto&amp;w=100&amp;s=2f4af12057a1ef1b61566368410b1ac7d2b9efe0 100w\" width=\"40\"></picture><figcaption class=\"_details_ygndg_24\"><strong class=\"_name_ygndg_51 title-serif-xs\">Oslo universitetssykehus.</strong><p class=\"_paragraph_o9xde_4 text-sans-m _description_ygndg_56\">Prosjektleder Angelina Hatlø Maniaol, nevrolog og overlege ved OUS</p></figcaption></figure></section><h2 class=\"_heading_o9xde_1 _heading_xtcu6_1 layout-component text-serif-m layout-normal text-serif-m layout-padded\"><strong class=\"_strong_o9xde_25\">– Hun står uten behandlingsalternativer</strong></h2><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">Overlege og spesialist i nevrologi, Abdullah Mohammud, søkte i oktober i fjor på vegne av Kirsten Jacobsen, om tilgang til den nye medisinen utenom OUS-studien, et såkalt godkjenningsfritak. </p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">Legen er tilknyttet Oslo universitetssykehus, Smerteklinikken og Colosseumklinikken. </p><div class=\"advertory-vg-netboard-wrapper__article\"><div class=\"advertory-vg-netboard__article\" id=\"netboard_4\"></div></div><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">– Formålet med søknaden er å sikre pasienten tilgang til en potensielt symptomlindrende og livsforlengende behandling, som kan bidra til å bremse sykdomsprogresjon og bevare funksjonsevnen, skrev han i søknaden. </p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\"><strong class=\"_strong_o9xde_25\">– Hun står uten behandlingsalternativer. Pasienten er kjent med og aksepterer at det for medisiner som er under utvikling, kan oppstå tidligere ukjente bivirkninger, også av alvorlig grad eller fatale.</strong></p><astro-island await-children client=\"visible\" component-export=\"Image\" component-url=\"https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/Image.r_XTj6LO.js\" opts=\"{&quot;name&quot;:&quot;Image&quot;,&quot;value&quot;:true}\" prefix=\"r152\" props=\"{&quot;alt&quot;:[0],&quot;caption&quot;:[0,&quot;Foto: Line Møller / VG&quot;],&quot;device&quot;:[0],&quot;editorialJudgment&quot;:[0],&quot;imageAsset&quot;:[0,{&quot;id&quot;:[0,&quot;7af797c0-34a8-46c2-b31a-0ccb8d17d7e8&quot;],&quot;size&quot;:[0,{&quot;width&quot;:[0,8256],&quot;height&quot;:[0,5504]}],&quot;urls&quot;:[1,[[0,{&quot;height&quot;:[0,27],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/7af797c0-34a8-46c2-b31a-0ccb8d17d7e8?format=auto&amp;w=40&amp;s=916fc115dbc9f52265295dd851e3fee30b6e40a7&quot;],&quot;width&quot;:[0,40]}],[0,{&quot;height&quot;:[0,53],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/7af797c0-34a8-46c2-b31a-0ccb8d17d7e8?format=auto&amp;w=80&amp;s=69b29b1052d777006a6ee35cdf3faede77066b99&quot;],&quot;width&quot;:[0,80]}],[0,{&quot;height&quot;:[0,67],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/7af797c0-34a8-46c2-b31a-0ccb8d17d7e8?format=auto&amp;w=100&amp;s=05b8e99cb27a9070333f4e04a7001c0b2b7d32b9&quot;],&quot;width&quot;:[0,100]}],[0,{&quot;height&quot;:[0,133],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/7af797c0-34a8-46c2-b31a-0ccb8d17d7e8?format=auto&amp;w=200&amp;s=376ce9c28a6904f4ea540745701a3a3334439766&quot;],&quot;width&quot;:[0,200]}],[0,{&quot;height&quot;:[0,160],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/7af797c0-34a8-46c2-b31a-0ccb8d17d7e8?format=auto&amp;w=240&amp;s=cfeac43834e718562052f0629ac0fefc35a697eb&quot;],&quot;width&quot;:[0,240]}],[0,{&quot;height&quot;:[0,320],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/7af797c0-34a8-46c2-b31a-0ccb8d17d7e8?format=auto&amp;w=480&amp;s=d5cef6bfc29927830ff3471d9a846a2f05c5b7f5&quot;],&quot;width&quot;:[0,480]}],[0,{&quot;height&quot;:[0,387],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/7af797c0-34a8-46c2-b31a-0ccb8d17d7e8?format=auto&amp;w=580&amp;s=77843d8a7a0ea0ed682e4c3b3ceeb970e3698fbd&quot;],&quot;width&quot;:[0,580]}],[0,{&quot;height&quot;:[0,480],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/7af797c0-34a8-46c2-b31a-0ccb8d17d7e8?format=auto&amp;w=720&amp;s=815291e2973f0084c16c3e4c2a43e109a029175c&quot;],&quot;width&quot;:[0,720]}],[0,{&quot;height&quot;:[0,720],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/7af797c0-34a8-46c2-b31a-0ccb8d17d7e8?format=auto&amp;w=1080&amp;s=7064b6ffb76f0adfa13f0de93dcf6163e5af9943&quot;],&quot;width&quot;:[0,1080]}],[0,{&quot;height&quot;:[0,960],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/7af797c0-34a8-46c2-b31a-0ccb8d17d7e8?format=auto&amp;w=1440&amp;s=71697e0247c287e1865585c19015eba4dc619d9c&quot;],&quot;width&quot;:[0,1440]}],[0,{&quot;height&quot;:[0,1440],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/7af797c0-34a8-46c2-b31a-0ccb8d17d7e8?format=auto&amp;w=2160&amp;s=28ae6c9569916efe58ca6b81b9bae0080c05adfa&quot;],&quot;width&quot;:[0,2160]}]]]}],&quot;layout&quot;:[0],&quot;marginBottom&quot;:[0],&quot;padded&quot;:[0],&quot;type&quot;:[0,&quot;news&quot;]}\" renderer-url=\"https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/client.B4ukvwq6.js\" ssr uid=\"2e5nrO\"><figure class=\"_figure_qp4xg_1 layout-component layout-normal\"><img alt=\"Foto: Line Møller / VG\" class=\"_image_qp4xg_65 layout-component layout-normal\" data-fullscreen-sizes=\"(min-width: 1000px) 2000px, 2000vw\" data-track-element-type=\"Article image fullscreen\" data-track-name=\"ImageFullscreen\" decoding=\"async\" height=\"5504\" itemprop=\"image\" loading=\"lazy\" sizes=\"(min-width: 980px) 980px, 100vw\" src=\"https://akamai.vgc.no/v2/images/7af797c0-34a8-46c2-b31a-0ccb8d17d7e8?format=auto&amp;w=40&amp;s=916fc115dbc9f52265295dd851e3fee30b6e40a7\" srcset=\"https://akamai.vgc.no/v2/images/7af797c0-34a8-46c2-b31a-0ccb8d17d7e8?format=auto&amp;w=40&amp;s=916fc115dbc9f52265295dd851e3fee30b6e40a7 40w, https://akamai.vgc.no/v2/images/7af797c0-34a8-46c2-b31a-0ccb8d17d7e8?format=auto&amp;w=80&amp;s=69b29b1052d777006a6ee35cdf3faede77066b99 80w, https://akamai.vgc.no/v2/images/7af797c0-34a8-46c2-b31a-0ccb8d17d7e8?format=auto&amp;w=100&amp;s=05b8e99cb27a9070333f4e04a7001c0b2b7d32b9 100w, https://akamai.vgc.no/v2/images/7af797c0-34a8-46c2-b31a-0ccb8d17d7e8?format=auto&amp;w=200&amp;s=376ce9c28a6904f4ea540745701a3a3334439766 200w, https://akamai.vgc.no/v2/images/7af797c0-34a8-46c2-b31a-0ccb8d17d7e8?format=auto&amp;w=240&amp;s=cfeac43834e718562052f0629ac0fefc35a697eb 240w, https://akamai.vgc.no/v2/images/7af797c0-34a8-46c2-b31a-0ccb8d17d7e8?format=auto&amp;w=480&amp;s=d5cef6bfc29927830ff3471d9a846a2f05c5b7f5 480w, https://akamai.vgc.no/v2/images/7af797c0-34a8-46c2-b31a-0ccb8d17d7e8?format=auto&amp;w=580&amp;s=77843d8a7a0ea0ed682e4c3b3ceeb970e3698fbd 580w, https://akamai.vgc.no/v2/images/7af797c0-34a8-46c2-b31a-0ccb8d17d7e8?format=auto&amp;w=720&amp;s=815291e2973f0084c16c3e4c2a43e109a029175c 720w, https://akamai.vgc.no/v2/images/7af797c0-34a8-46c2-b31a-0ccb8d17d7e8?format=auto&amp;w=1080&amp;s=7064b6ffb76f0adfa13f0de93dcf6163e5af9943 1080w, https://akamai.vgc.no/v2/images/7af797c0-34a8-46c2-b31a-0ccb8d17d7e8?format=auto&amp;w=1440&amp;s=71697e0247c287e1865585c19015eba4dc619d9c 1440w, https://akamai.vgc.no/v2/images/7af797c0-34a8-46c2-b31a-0ccb8d17d7e8?format=auto&amp;w=2160&amp;s=28ae6c9569916efe58ca6b81b9bae0080c05adfa 2160w\" style=\"object-position:0% 0%\" width=\"8256\"><figcaption class=\"text-sans-s _caption_qp4xg_10 layout-component layout-padded\">Foto: Line Møller / VG</figcaption></figure><!--astro:end--></astro-island><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">For Kirsten ville den nye medisinen gitt håp. Men hun fikk avslag. </p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">– Vi har mottatt tre søknader om godkjenningsfritak for ILB de siste månedene. To av sakene er fortsatt under behandling. Fordi sakene ligner på hverandre, ønsker vi ikke å uttale oss nå, sier pressevakten i Direktoratet for Medisinske Produkter til VG.</p><astro-island await-children client=\"visible\" component-export=\"PollWrapper\" component-url=\"https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/PollWrapper.CLpAz43c.js\" opts=\"{&quot;name&quot;:&quot;Component&quot;,&quot;value&quot;:{&quot;rootMargin&quot;:&quot;100%&quot;}}\" prefix=\"r218\" props=\"{&quot;answers&quot;:[1,[[0,{&quot;correct&quot;:[0,false],&quot;value&quot;:[0,&quot;Ja, uten tvil&quot;]}],[0,{&quot;correct&quot;:[0,false],&quot;value&quot;:[0,&quot;Kanskje&quot;]}],[0,{&quot;correct&quot;:[0,false],&quot;value&quot;:[0,&quot;Nei&quot;]}]]],&quot;fact&quot;:[0],&quot;id&quot;:[0,&quot;k0R0V9-b3455e2d62&quot;],&quot;image&quot;:[0],&quot;question&quot;:[0,&quot;Ville du tatt en uprøvd medisin hvis du var alvorlig syk?&quot;],&quot;subtype&quot;:[0,&quot;poll&quot;],&quot;type&quot;:[0,&quot;poll&quot;],&quot;richType&quot;:[0,&quot;poll-question&quot;],&quot;isDev&quot;:[0,false],&quot;statistics&quot;:[0,{&quot;questionId&quot;:[0,&quot;k0R0V9-b3455e2d62&quot;],&quot;answers&quot;:[0,{&quot;0&quot;:[0,&quot;272&quot;],&quot;1&quot;:[0,&quot;23&quot;],&quot;2&quot;:[0,&quot;3&quot;]}],&quot;lastUpdated&quot;:[0,1769331858933]}]}\" renderer-url=\"https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/client.B4ukvwq6.js\" ssr uid=\"Z1ObcjM\"><section class=\"font-vg-sans layout-component layout-normal layout-padded _poll_7u87d_1\" data-theme=\"accent\" data-track-element-type=\"Poll\" data-track-id=\"poll:k0R0V9-b3455e2d62\" data-track-impression=\"true\" data-track-name=\"Ville du tatt en uprøvd medisin hvis du var alvorlig syk?\" id=\"poll-k0R0V9-b3455e2d62\"><form class=\"_form_7u87d_40\" data-subtype=\"poll\"><fieldset class=\"_fieldset_7u87d_34\"><div class=\"_contents_7u87d_41\"><legend class=\"title-serif-s _legend_7u87d_112\"><span class=\"_quizIntro_7u87d_58\"></span><span>Ville du tatt en uprøvd medisin hvis du var alvorlig syk?</span></legend><input hidden=\"\" id=\"0-k0R0V9-b3455e2d62\" name=\"k0R0V9-b3455e2d62\" type=\"radio\" value=\"0\"><label class=\"_label_7u87d_17\" data-track-id=\"poll:k0R0V9-b3455e2d62:0\" data-track-name=\"Ja, uten tvil\" for=\"0-k0R0V9-b3455e2d62\" style=\"--percentage:0%\" tabindex=\"0\"><span class=\"_letter_7u87d_103\">a</span><span class=\"text-sans-m _value_7u87d_140\">Ja, uten tvil</span></label><input hidden=\"\" id=\"1-k0R0V9-b3455e2d62\" name=\"k0R0V9-b3455e2d62\" type=\"radio\" value=\"1\"><label class=\"_label_7u87d_17\" data-track-id=\"poll:k0R0V9-b3455e2d62:1\" data-track-name=\"Kanskje\" for=\"1-k0R0V9-b3455e2d62\" style=\"--percentage:0%\" tabindex=\"0\"><span class=\"_letter_7u87d_103\">b</span><span class=\"text-sans-m _value_7u87d_140\">Kanskje</span></label><input hidden=\"\" id=\"2-k0R0V9-b3455e2d62\" name=\"k0R0V9-b3455e2d62\" type=\"radio\" value=\"2\"><label class=\"_label_7u87d_17\" data-track-id=\"poll:k0R0V9-b3455e2d62:2\" data-track-name=\"Nei\" for=\"2-k0R0V9-b3455e2d62\" style=\"--percentage:0%\" tabindex=\"0\"><span class=\"_letter_7u87d_103\">c</span><span class=\"text-sans-m _value_7u87d_140\">Nei</span></label></div></fieldset></form></section><!--astro:end--></astro-island> <p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">Medisinen som nå skal testes ut i Norge, er tidligere testet i et svensk/britisk prosjekt. Her er det rapportert om funksjonsforbedring hos flere pasienter og ingen alvorlige bivirkninger av den nyutviklede medisinen. </p><div class=\"advertory-vg-netboard-wrapper__article\"><div class=\"advertory-vg-netboard__article\" id=\"netboard_5\"></div></div><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">Blant ALS-syke har erfaringene til <abbr class=\"_explanation_o9xde_140\" tabindex=\"0\" title=\"https://www.neurologiisverige.se/als-medicinen-ger-erik-framtidshopp/?utm_source=chatgpt.com\">svenske Erik<span aria-hidden=\"true\" class=\"text-sans-s _title_o9xde_151\" role=\"presentation\"><span class=\"text-serif-l _word_o9xde_156\">svenske Erik</span>https://www.neurologiisverige.se/als-medicinen-ger-erik-framtidshopp/?utm_source=chatgpt.com</span></abbr>, en pasient i 30-årene, tent et håp. </p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">Han har selv fortalt i svenske medier at han ble tydelig bedre etter å ha deltatt i prosjektet.  </p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">VG får opplyst at Erik er den eneste pasienten i studiet som fortsatt lever. </p><h2 class=\"_heading_o9xde_1 _heading_xtcu6_1 _heading_1rauo_1 layout-component text-serif-m layout-normal layout-padded\" id=\"Beinet sviktet\"> Beinet sviktet</h2><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">Kirsten Jacobsens første symptomer på alvorlig sykdom, var et bein som svikt et.</p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">– Etter hvert greide jeg ikke å gå lenger, sier hun.</p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">– Det utviklet seg gradvis. Det er det som er denne sykdommen. Den er grusom. Du har gradvise tap av muskulatur hver dag. Det er nådeløst og det går sakte, sier ektemannen Tallak Thorleifsson.</p><astro-island await-children client=\"visible\" component-export=\"Image\" component-url=\"https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/Image.r_XTj6LO.js\" opts=\"{&quot;name&quot;:&quot;Image&quot;,&quot;value&quot;:true}\" prefix=\"r164\" props=\"{&quot;alt&quot;:[0],&quot;caption&quot;:[0,&quot;Foto: Line Møller / 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renderer-url=\"https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/client.B4ukvwq6.js\" ssr uid=\"Z2afPsU\"><figure class=\"_figure_qp4xg_1 layout-component layout-normal\"><img alt=\"Foto: Line Møller / VG\" class=\"_image_qp4xg_65 layout-component layout-normal\" data-fullscreen-sizes=\"(min-width: 1000px) 2000px, 2000vw\" data-track-element-type=\"Article image fullscreen\" data-track-name=\"ImageFullscreen\" decoding=\"async\" height=\"5238\" itemprop=\"image\" loading=\"lazy\" sizes=\"(min-width: 980px) 980px, 100vw\" src=\"https://akamai.vgc.no/v2/images/e0d7776b-9279-42e3-8d53-7eb1b76453f2?format=auto&amp;w=40&amp;s=3bb7b6dbbd9a276a4f2ca5aad6aa77ac4509d756\" srcset=\"https://akamai.vgc.no/v2/images/e0d7776b-9279-42e3-8d53-7eb1b76453f2?format=auto&amp;w=40&amp;s=3bb7b6dbbd9a276a4f2ca5aad6aa77ac4509d756 40w, https://akamai.vgc.no/v2/images/e0d7776b-9279-42e3-8d53-7eb1b76453f2?format=auto&amp;w=80&amp;s=3510bcdc875356b81f349ffaaef89d47e4861635 80w, https://akamai.vgc.no/v2/images/e0d7776b-9279-42e3-8d53-7eb1b76453f2?format=auto&amp;w=100&amp;s=fb2e9a4cd38dd227ee34fe840597fcff9b81ca14 100w, https://akamai.vgc.no/v2/images/e0d7776b-9279-42e3-8d53-7eb1b76453f2?format=auto&amp;w=200&amp;s=5c79dec05b958d4c13c09bf4ee96efb575a1ed31 200w, https://akamai.vgc.no/v2/images/e0d7776b-9279-42e3-8d53-7eb1b76453f2?format=auto&amp;w=240&amp;s=a20cb23ec15b7a9fcd82a495bb1afa62c326fc93 240w, https://akamai.vgc.no/v2/images/e0d7776b-9279-42e3-8d53-7eb1b76453f2?format=auto&amp;w=480&amp;s=a7f82d7765d24c278e4bfe8c133ad6314ecca1ce 480w, https://akamai.vgc.no/v2/images/e0d7776b-9279-42e3-8d53-7eb1b76453f2?format=auto&amp;w=580&amp;s=987e70d894b5b0564357a4168858341aeb649913 580w, https://akamai.vgc.no/v2/images/e0d7776b-9279-42e3-8d53-7eb1b76453f2?format=auto&amp;w=720&amp;s=c97a37864d22d964ef10f0cc04ae121bb190bf72 720w, https://akamai.vgc.no/v2/images/e0d7776b-9279-42e3-8d53-7eb1b76453f2?format=auto&amp;w=1080&amp;s=5ce4dcba9636246b1562a31a81361b5ed41601f4 1080w, https://akamai.vgc.no/v2/images/e0d7776b-9279-42e3-8d53-7eb1b76453f2?format=auto&amp;w=1440&amp;s=bbe391f080b8688649f66037afecd13eb7b282ae 1440w, https://akamai.vgc.no/v2/images/e0d7776b-9279-42e3-8d53-7eb1b76453f2?format=auto&amp;w=2160&amp;s=7451bbbbf478258ae5afcbe7c5bb248fad8ecca6 2160w\" style=\"object-position:0% 0%\" width=\"3929\"><figcaption class=\"text-sans-s _caption_qp4xg_10 layout-component layout-padded\">Foto: Line Møller / VG</figcaption></figure><!--astro:end--></astro-island><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">Ved påsketider i 2023 kom diagnosen. </p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\"><strong class=\"_strong_o9xde_25\">Kirsten hadde ALS. </strong></p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">Nesten tre år senere sitter hun i rullestolen hjemme i Oslo. Pustehjelp er blitt en del av hverdagen. </p><h2 class=\"_heading_o9xde_1 _heading_xtcu6_1 _heading_1rauo_1 layout-component text-serif-m layout-normal layout-padded\" id=\"– Et siste håp\"> – Et siste håp</h2><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">ALS-diagnosen er tung for hele familien. Håpet var et positivt svar på søknaden om å få bruke ILB.</p><div class=\"advertory-vg-netboard-wrapper__article\"><div class=\"advertory-vg-netboard__article\" id=\"netboard_6\"></div></div><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">– Det oppleves dypt urettferdig at moren vår nektes et siste forsøk, selv om hun tar både kostnad og risiko innenfor en ordning som er ment å gi håp til alvorlig syke uten behandlingsalternativer,  sier datteren Tilde Thorleifsson. </p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\"><strong class=\"_strong_o9xde_25\">– Et nei i en slik situasjon er ikke nøytralt – det er et valg om å beskytte systemet fremfor å vise medmenneskelighet.</strong></p><astro-island await-children client=\"visible\" component-export=\"Image\" component-url=\"https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/Image.r_XTj6LO.js\" opts=\"{&quot;name&quot;:&quot;Image&quot;,&quot;value&quot;:true}\" prefix=\"r173\" props=\"{&quot;alt&quot;:[0],&quot;caption&quot;:[0,&quot;Foto: Line Møller / VG&quot;],&quot;device&quot;:[0],&quot;editorialJudgment&quot;:[0],&quot;imageAsset&quot;:[0,{&quot;id&quot;:[0,&quot;c39bab02-14e7-47f8-b850-e1ec78a6195e&quot;],&quot;size&quot;:[0,{&quot;width&quot;:[0,4866],&quot;height&quot;:[0,3651]}],&quot;urls&quot;:[1,[[0,{&quot;height&quot;:[0,30],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=40&amp;s=627966fce50ef76c6a217f4373dc2b92092ed531&quot;],&quot;width&quot;:[0,40]}],[0,{&quot;height&quot;:[0,60],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=80&amp;s=621e555f162f7f1bd60e7e4f8859420d1b1c4131&quot;],&quot;width&quot;:[0,80]}],[0,{&quot;height&quot;:[0,75],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=100&amp;s=b7f901f2655ecb954f0ff2deb4b0431d0d00e4b8&quot;],&quot;width&quot;:[0,100]}],[0,{&quot;height&quot;:[0,150],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=200&amp;s=ffbad8afa51aaeba2ee3a636945eaa7775a78b96&quot;],&quot;width&quot;:[0,200]}],[0,{&quot;height&quot;:[0,180],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=240&amp;s=6f83cdb9e97431536dbdeff1cbf3b9aa5a1731eb&quot;],&quot;width&quot;:[0,240]}],[0,{&quot;height&quot;:[0,360],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=480&amp;s=323f4826a92e7c1cdbe75967217dbb543808b027&quot;],&quot;width&quot;:[0,480]}],[0,{&quot;height&quot;:[0,435],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=580&amp;s=1e2f875acb7526aeec47f548c3f3336a3936b020&quot;],&quot;width&quot;:[0,580]}],[0,{&quot;height&quot;:[0,540],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=720&amp;s=8c493154cbc69d8b6ed49f34d06ba07f3fd9ea0f&quot;],&quot;width&quot;:[0,720]}],[0,{&quot;height&quot;:[0,810],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=1080&amp;s=35f1a532c71416f45c82d834ccbcc0eced3c124e&quot;],&quot;width&quot;:[0,1080]}],[0,{&quot;height&quot;:[0,1080],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=1440&amp;s=01950fdd1ed81f519c0a3e50d2b5e2959d5a8ba3&quot;],&quot;width&quot;:[0,1440]}],[0,{&quot;height&quot;:[0,1621],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=2160&amp;s=6ebaf4bcc243258763f35217203e4c59ede3379d&quot;],&quot;width&quot;:[0,2160]}]]]}],&quot;layout&quot;:[0],&quot;marginBottom&quot;:[0],&quot;padded&quot;:[0],&quot;type&quot;:[0,&quot;news&quot;]}\" renderer-url=\"https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/client.B4ukvwq6.js\" ssr uid=\"FQC7S\"><figure class=\"_figure_qp4xg_1 layout-component layout-normal\"><img alt=\"Foto: Line Møller / VG\" class=\"_image_qp4xg_65 layout-component layout-normal\" data-fullscreen-sizes=\"(min-width: 1000px) 2000px, 2000vw\" data-track-element-type=\"Article image fullscreen\" data-track-name=\"ImageFullscreen\" decoding=\"async\" height=\"3651\" itemprop=\"image\" loading=\"lazy\" sizes=\"(min-width: 980px) 980px, 100vw\" src=\"https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=40&amp;s=627966fce50ef76c6a217f4373dc2b92092ed531\" srcset=\"https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=40&amp;s=627966fce50ef76c6a217f4373dc2b92092ed531 40w, https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=80&amp;s=621e555f162f7f1bd60e7e4f8859420d1b1c4131 80w, https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=100&amp;s=b7f901f2655ecb954f0ff2deb4b0431d0d00e4b8 100w, https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=200&amp;s=ffbad8afa51aaeba2ee3a636945eaa7775a78b96 200w, https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=240&amp;s=6f83cdb9e97431536dbdeff1cbf3b9aa5a1731eb 240w, https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=480&amp;s=323f4826a92e7c1cdbe75967217dbb543808b027 480w, https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=580&amp;s=1e2f875acb7526aeec47f548c3f3336a3936b020 580w, https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=720&amp;s=8c493154cbc69d8b6ed49f34d06ba07f3fd9ea0f 720w, https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=1080&amp;s=35f1a532c71416f45c82d834ccbcc0eced3c124e 1080w, https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=1440&amp;s=01950fdd1ed81f519c0a3e50d2b5e2959d5a8ba3 1440w, https://akamai.vgc.no/v2/images/c39bab02-14e7-47f8-b850-e1ec78a6195e?format=auto&amp;w=2160&amp;s=6ebaf4bcc243258763f35217203e4c59ede3379d 2160w\" style=\"object-position:0% 0%\" width=\"4866\"><figcaption class=\"text-sans-s _caption_qp4xg_10 layout-component layout-padded\">Foto: Line Møller / VG</figcaption></figure><!--astro:end--></astro-island><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">Hun og broren Mandius har sett mamma bli stadig mer preget av sykdommen.</p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">– Når alternativet er en sikker død, opplever vi det som etisk uforståelig at frykten for å gjøre feil veier tyngre enn viljen til å gi håp, sier datteren. </p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">– Hvis behandlingen senere viser seg å ha effekt, vil det være tungt å leve med at hun ble nektet denne muligheten mens tiden fortsatt fantes. For meg som datter er dette først og fremst et etisk spørsmål om hvordan et system kan nekte døende et siste håp.</p><h2 class=\"_heading_o9xde_1 _heading_xtcu6_1 _heading_1rauo_1 layout-component text-serif-m layout-normal layout-padded\" id=\"Forsker: – Stanset sykdomsutviklingen\"> Forsker: – Stanset sykdomsutviklingen</h2><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">Ann Logan, professor i <abbr class=\"_explanation_o9xde_140\" tabindex=\"0\" title=\"Nevrodegenerative sykdommer er sykdommer som rammer hjernen, ryggmargen eller perifere nerver hvor det gradvis blir en nedbryting av nervevevet.\n\nVanlige nevrodegenerative sykdommer som rammer hjernen er: Alzheimers sykdom, Parkinsons sykdom og Huntingtons sykdom. Nevrodegenerative sykdommer som rammer ryggmarg og perifere nerver kan være: arvelig spastisk paraparese og nevropatier.\">regenerativ<span aria-hidden=\"true\" class=\"text-sans-s _title_o9xde_151\" role=\"presentation\"><span class=\"text-serif-l _word_o9xde_156\">regenerativ</span>Nevrodegenerative sykdommer er sykdommer som rammer hjernen, ryggmargen eller perifere nerver hvor det gradvis blir en nedbryting av nervevevet.\n\nVanlige nevrodegenerative sykdommer som rammer hjernen er: Alzheimers sykdom, Parkinsons sykdom og Huntingtons sykdom. Nevrodegenerative sykdommer som rammer ryggmarg og perifere nerver kan være: arvelig spastisk paraparese og nevropatier.</span></abbr> medisin ved University of Warwick i England, er ansvarlig for den svensk/britiske studien. </p><div class=\"advertory-vg-netboard-wrapper__article\"><div class=\"advertory-vg-netboard__article\" id=\"netboard_7\"></div></div><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\"><a class=\"_link_o9xde_39\" href=\"https://www.neurologiisverige.se/wp-content/uploads/2025/02/Neurologi-i-Sverige-Nr-1-ALS-1.pdf\">Til tidsskriftet Neurologi i Sverige, sier hun</a>: </p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">– Ingen andre ALS-legemidler har vist tilsvarende sykdomsmodifiserende effekter. </p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">Hun mener ILB tilhører neste generasjons legemidler som kan beskytte og reparere sykt og skadet nerve- og muskelvev.</p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">– Dette innebærer at det åpnes nye muligheter for å utvikle en helt ny klasse av <abbr class=\"_explanation_o9xde_140\" tabindex=\"0\" title=\" Medisiner som er utviklet for å beskytte, reparere eller regenerere skadet nerve- og muskelvev.\">neuroregenerative <span aria-hidden=\"true\" class=\"text-sans-s _title_o9xde_151\" role=\"presentation\"><span class=\"text-serif-l _word_o9xde_156\">neuroregenerative </span> Medisiner som er utviklet for å beskytte, reparere eller regenerere skadet nerve- og muskelvev.</span></abbr>legemidler. Det vi ser kan være et <abbr class=\"_explanation_o9xde_140\" tabindex=\"0\" title=\"En grunnleggende endring i måten man tenker på eller gjør ting, ofte brukt i vitenskapelige eller teknologiske sammenhenger.\">paradigmeskifte <span aria-hidden=\"true\" class=\"text-sans-s _title_o9xde_151\" role=\"presentation\"><span class=\"text-serif-l _word_o9xde_156\">paradigmeskifte </span>En grunnleggende endring i måten man tenker på eller gjør ting, ofte brukt i vitenskapelige eller teknologiske sammenhenger.</span></abbr>ved behandling av ALS. Jeg forsvarer selvsagt arbeidet mitt med ILB fullt ut, og står bak alle uttalelser og sitater som er tillagt meg, sier professor Logan til VG.</p><section class=\"_portrait_ygndg_1 layout-component layout-normal layout-padded\" data-body=\"false\"><figure style=\"display:contents\"><picture class=\"_picture_ygndg_60\"><img alt=\"Bilde av University of Warwick/Researchgate\" class=\"_image_ygndg_42\" height=\"40\" itemprop=\"image\" loading=\"lazy\" sizes=\"480px\" src=\"https://akamai.vgc.no/v2/images/56e3e362-e0d7-4444-8407-72a8c54a924f?format=auto&amp;w=40&amp;s=f23ad4aad6348de7b555671d58adf9782cecfdb9\" srcset=\"https://akamai.vgc.no/v2/images/56e3e362-e0d7-4444-8407-72a8c54a924f?format=auto&amp;w=40&amp;s=f23ad4aad6348de7b555671d58adf9782cecfdb9 40w, https://akamai.vgc.no/v2/images/56e3e362-e0d7-4444-8407-72a8c54a924f?format=auto&amp;w=80&amp;s=7b5f0dfcf3609ae822fa049183e375e8a69b87c8 80w, https://akamai.vgc.no/v2/images/56e3e362-e0d7-4444-8407-72a8c54a924f?format=auto&amp;w=100&amp;s=7bcf3b8db94f9f3ec9496130879cbc53ee4fb1fb 100w, https://akamai.vgc.no/v2/images/56e3e362-e0d7-4444-8407-72a8c54a924f?format=auto&amp;w=200&amp;s=27812bc8fbd2f71c806baa6cbba91bed744f5d53 200w, https://akamai.vgc.no/v2/images/56e3e362-e0d7-4444-8407-72a8c54a924f?format=auto&amp;w=240&amp;s=887bfcffc343e9c1b32d8fbd08b7c55c2ee55ff8 240w, https://akamai.vgc.no/v2/images/56e3e362-e0d7-4444-8407-72a8c54a924f?format=auto&amp;w=480&amp;s=599b22a5535dbd83bab375a9d2b1d2f2e4d12f38 480w\" width=\"40\"></picture><figcaption class=\"_details_ygndg_24\"><strong class=\"_name_ygndg_51 title-serif-xs\">University of Warwick/Researchgate</strong><p class=\"_paragraph_o9xde_4 text-sans-m _description_ygndg_56\">Professor Ann Logan er forsker ved University of Warwick i England</p></figcaption></figure></section><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">Svenske <a class=\"_link_o9xde_39\" href=\"https://neurologisktidskrift.se/sjukdomar/als/92-ny-metod-har-potentialen-att-bli-forsta-sjukdomsmodifierande-behandling-for-als.html\">«Neurologisk Tidskrift»</a> skriver at prosjekt hun ledet kan ha funnet en metode som påvirker mekanismer som har betydning for utviklingen av ALS og andre <abbr class=\"_explanation_o9xde_140\" tabindex=\"0\" title=\"Nevrodegenerative sykdommer er en gruppe lidelser der nerveceller i hjernen, ryggmargen eller perifere nerver gradvis brytes ned og dør, noe som fører til progressive tap av funksjoner. Vanlige eksempler inkluderer Alzheimers sykdom, Parkinsons sykdom, Huntingtons sykdom og ALS, som alle medfører ulike symptomer som kognitiv svikt, bevegelsesproblemer, skjelving og muskelsvakhet. Disse sykdommene kjennetegnes av at de ikke-replikerbare nervecellene går tapt over tid, og de kan være både arvelige og sporadiske\">nevrodegenerative sykdommer. <span aria-hidden=\"true\" class=\"text-sans-s _title_o9xde_151\" role=\"presentation\"><span class=\"text-serif-l _word_o9xde_156\">nevrodegenerative sykdommer. </span>Nevrodegenerative sykdommer er en gruppe lidelser der nerveceller i hjernen, ryggmargen eller perifere nerver gradvis brytes ned og dør, noe som fører til progressive tap av funksjoner. Vanlige eksempler inkluderer Alzheimers sykdom, Parkinsons sykdom, Huntingtons sykdom og ALS, som alle medfører ulike symptomer som kognitiv svikt, bevegelsesproblemer, skjelving og muskelsvakhet. Disse sykdommene kjennetegnes av at de ikke-replikerbare nervecellene går tapt over tid, og de kan være både arvelige og sporadiske</span></abbr></p><h2 class=\"_heading_o9xde_1 _heading_xtcu6_1 _heading_1rauo_1 layout-component text-serif-m layout-normal layout-padded\" id=\"DMP: – Ikke godkjent og ikke forsvarlig\"> DMP: – Ikke godkjent og ikke forsvarlig</h2><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">Direktoratet for medisinske produkter (<abbr class=\"_explanation_o9xde_140\" tabindex=\"0\" title=\"En offentlig etat som har ansvar for å regulere og overvåke medisinske produkter, inkludert legemidler, for å sikre at de er trygge og effektive.\">DMP<span aria-hidden=\"true\" class=\"text-sans-s _title_o9xde_151\" role=\"presentation\"><span class=\"text-serif-l _word_o9xde_156\">DMP</span>En offentlig etat som har ansvar for å regulere og overvåke medisinske produkter, inkludert legemidler, for å sikre at de er trygge og effektive.</span></abbr>) slår fast at bruken av legemiddelet ILB ikke kan anses som forsvarlig. </p><div class=\"advertory-vg-netboard-wrapper__article\"><div class=\"advertory-vg-netboard__article\" id=\"netboard_8\"></div></div><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">DMP viser til at medisinen ikke er godkjent i noe land og kun er testet i små, tidlige fase 1- og 2-studier, uten dokumentasjon på klinisk effekt. </p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\"><strong class=\"_strong_o9xde_25\">– Systemet er umenneskelig. De vil beskytte seg selv. Men de må ikke ta fra oss håpet, sier Tallak, Kirstens ektemann og nærmeste støtte. </strong></p><astro-island await-children client=\"visible\" component-export=\"Image\" component-url=\"https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/Image.r_XTj6LO.js\" opts=\"{&quot;name&quot;:&quot;Image&quot;,&quot;value&quot;:true}\" prefix=\"r191\" props=\"{&quot;alt&quot;:[0],&quot;caption&quot;:[0,&quot;Foto: Line Møller / 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renderer-url=\"https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/client.B4ukvwq6.js\" ssr uid=\"Z1YkWk1\"><figure class=\"_figure_qp4xg_1 layout-component layout-normal\"><img alt=\"Foto: Line Møller / VG\" class=\"_image_qp4xg_65 layout-component layout-normal\" data-fullscreen-sizes=\"(min-width: 1000px) 2000px, 2000vw\" data-track-element-type=\"Article image fullscreen\" data-track-name=\"ImageFullscreen\" decoding=\"async\" height=\"4558\" itemprop=\"image\" loading=\"lazy\" sizes=\"(min-width: 980px) 980px, 100vw\" src=\"https://akamai.vgc.no/v2/images/ab2453be-f4b0-4063-9986-3071031f83a9?format=auto&amp;w=40&amp;s=edc2455b7f90da9c288def8a26dcbfa4dcb1c297\" srcset=\"https://akamai.vgc.no/v2/images/ab2453be-f4b0-4063-9986-3071031f83a9?format=auto&amp;w=40&amp;s=edc2455b7f90da9c288def8a26dcbfa4dcb1c297 40w, https://akamai.vgc.no/v2/images/ab2453be-f4b0-4063-9986-3071031f83a9?format=auto&amp;w=80&amp;s=d231fcb52d81fa2557ca2e3f4231e680763053b4 80w, https://akamai.vgc.no/v2/images/ab2453be-f4b0-4063-9986-3071031f83a9?format=auto&amp;w=100&amp;s=eb23c6740f1b7d64cfbe78f54a50ff7b2d9985ee 100w, https://akamai.vgc.no/v2/images/ab2453be-f4b0-4063-9986-3071031f83a9?format=auto&amp;w=200&amp;s=0eae3d5ae4cfa1f88fadb655bbfe9403ea4dad96 200w, https://akamai.vgc.no/v2/images/ab2453be-f4b0-4063-9986-3071031f83a9?format=auto&amp;w=240&amp;s=da9d3fe6bb573dbb44a5d5557f5edec5db223918 240w, https://akamai.vgc.no/v2/images/ab2453be-f4b0-4063-9986-3071031f83a9?format=auto&amp;w=480&amp;s=61af717e5da4f3ea5d9c9efd831a31d4d21a4fc9 480w, https://akamai.vgc.no/v2/images/ab2453be-f4b0-4063-9986-3071031f83a9?format=auto&amp;w=580&amp;s=5c3eee4042a4182a4505a68385884d9098637d95 580w, https://akamai.vgc.no/v2/images/ab2453be-f4b0-4063-9986-3071031f83a9?format=auto&amp;w=720&amp;s=f3905185461f90cd68145430eca6437fd964bf64 720w, https://akamai.vgc.no/v2/images/ab2453be-f4b0-4063-9986-3071031f83a9?format=auto&amp;w=1080&amp;s=5a90da51d5c43fedcd19e827bf69f36e02353c88 1080w, https://akamai.vgc.no/v2/images/ab2453be-f4b0-4063-9986-3071031f83a9?format=auto&amp;w=1440&amp;s=600fb62ce32b13496cf08686ee31bf17675951df 1440w, https://akamai.vgc.no/v2/images/ab2453be-f4b0-4063-9986-3071031f83a9?format=auto&amp;w=2160&amp;s=ddfab71f4e39b671d2d89d78a6135a4c2894d3f3 2160w\" style=\"object-position:0% 0%\" width=\"6077\"><figcaption class=\"text-sans-s _caption_qp4xg_10 layout-component layout-padded\">Foto: Line Møller / VG</figcaption></figure><!--astro:end--></astro-island><ul class=\"_list_o9xde_3 _list_xtcu6_9 _unordered_o9xde_106 layout-component text-serif-m layout-normal text-serif-m layout-padded\"><li class=\"_item_o9xde_30\">Oslo universitetssykehus opplyser på forskningsprosjektets hjemmeside at hos ALS-pasienter har <strong class=\"_strong_o9xde_25\">sikkerheten og den foreløpige effekten av ILB tidligere blitt undersøkt i to studier med til sammen 24 deltagere. </strong></li><li class=\"_item_o9xde_30\">I begge studiene ble det rapportert at pasientgruppen<strong class=\"_strong_o9xde_25\"> tålte medisinen godt</strong>. De fleste <strong class=\"_strong_o9xde_25\">bivirkningene var milde eller moderate,</strong> de var kortvarige og trengte liten eller ingen behandling. </li><li class=\"_item_o9xde_30\">OUS skriver at h<strong class=\"_strong_o9xde_25\">ensikten med prosjektet er å måle effekten og sikkerheten av ILB </strong>sammenlignet med den nåværende standardbehandlingen, Riluzol.</li></ul><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">– Det finnes hverken vurdering av nytte- eller risikoprofil, preparatomtale eller kvalitetssikret informasjon om dosering og bivirkninger. Usikkerheten rundt sikkerhet og effekt vurderes som betydelig. Selv ved alvorlig sykdom som ALS kan ikke manglende behandlingsalternativer oppveie kravet til dokumentasjon, skriver Direktoratet for Medisinske Produkter til VG. </p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\"><strong class=\"_strong_o9xde_25\">Direktoratet understreker at forsvarlighetskravet er absolutt og ikke kan fravikes. </strong></p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">– Vilkårene for godkjenningsfritak er ikke oppfylt, skriver overlege Ingrid Aas i Direktoratet for medisinske produkter til VG.</p><h2 class=\"_heading_o9xde_1 _heading_xtcu6_1 _heading_1rauo_1 layout-component text-serif-m layout-normal layout-padded\" id=\"Avslag prøves i svensk rett\"> Avslag prøves i svensk rett</h2><astro-island await-children client=\"visible\" component-export=\"FactBox\" component-url=\"https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/FactBox.BF0-FmDg.js\" opts=\"{&quot;name&quot;:&quot;FactBox&quot;,&quot;value&quot;:true}\" prefix=\"r197\" props=\"{&quot;component&quot;:[0,{&quot;title&quot;:[0,{&quot;value&quot;:[0,&quot;Prøves i svensk rett&quot;]}],&quot;paragraphs&quot;:[1,[[0,{&quot;text&quot;:[0,{&quot;value&quot;:[0,&quot;Björn Pilström som er administrerende direktør og medisinsk direktør ​ i Tikomed, bekrefter overfor VG at ILB kun er testet for effekt i to små fase 2-studier med totalt 24 pasienter. Det er også testet for sikkerhet i fire fase 1-studier. Sammenlagt har drøyt 90 pasienter deltatt. &quot;],&quot;markup&quot;:[1,[[0,{&quot;type&quot;:[0,&quot;style:strong&quot;],&quot;offset&quot;:[0,105],&quot;length&quot;:[0,1]}],[0,{&quot;type&quot;:[0,&quot;explanation&quot;],&quot;offset&quot;:[0,144],&quot;length&quot;:[0,15],&quot;symbol&quot;:[0,&quot;I en fase 2-studie deltar flere pasienter. Man undersøker blant annet effekt, om bivirkninger er akesptable og trygghet for pasienten.&quot;]}],[0,{&quot;type&quot;:[0,&quot;style:strong&quot;],&quot;offset&quot;:[0,144],&quot;length&quot;:[0,15]}],[0,{&quot;type&quot;:[0,&quot;explanation&quot;],&quot;offset&quot;:[0,224],&quot;length&quot;:[0,14],&quot;symbol&quot;:[0,&quot;En fase 1-studie er første gang en ny behandling testes på mennesker. Målet er å finne ut om behandlingen er trygg,  eventuelle bivirkninger og dose medsin. Det er ofte få deltakere. &quot;]}],[0,{&quot;type&quot;:[0,&quot;style:strong&quot;],&quot;offset&quot;:[0,224],&quot;length&quot;:[0,14]}]]]}],&quot;blockType&quot;:[0,&quot;paragraph&quot;]}],[0,{&quot;text&quot;:[0,{&quot;value&quot;:[0,&quot;– Jeg har ingen mening om myndighetens vurdering av hvorvidt bruk av ILB kan anses forsvarlig, men det er likevel verdt å merke seg at Oslo universitetssykehus har startet sin randomiserte fase 2-studie med litt over 100 pasienter, der den ene behandlingsgruppen får ILB, sier Pihlstrøm. &quot;],&quot;markup&quot;:[0]}],&quot;blockType&quot;:[0,&quot;paragraph&quot;]}],[0,{&quot;text&quot;:[0,{&quot;value&quot;:[0,&quot;I en randomisert fase 2-studie blir pasientene tilfeldig fordelt mellom ulike behandlinger for å undersøke effekt og bivirkninger.&quot;],&quot;markup&quot;:[0]}],&quot;blockType&quot;:[0,&quot;paragraph&quot;]}],[0,{&quot;text&quot;:[0,{&quot;value&quot;:[0,&quot;Pilstrøm bekrefter at også det svenske Legemiddelverket har avslått søknader fra ALS-pasienter som ønsker å bruke ILB. &quot;],&quot;markup&quot;:[0]}],&quot;blockType&quot;:[0,&quot;paragraph&quot;]}],[0,{&quot;text&quot;:[0,{&quot;value&quot;:[0,&quot;– Dette prøves nå for svensk domstol, sier han.&quot;],&quot;markup&quot;:[0]}],&quot;blockType&quot;:[0,&quot;paragraph&quot;]}],[0,{&quot;text&quot;:[0,{&quot;value&quot;:[0,&quot;I Forvaltningsretten i Sverige er det nylig avsagt dom mot legemiddelverket. En ALS-pasient fikk avslag på å bruke ILB på lisens og gikk til sak. Retten stilte spørsmål ved avgjørelsen og ba legemiddelverket vurdere saken på nytt. Begrunnelsen er forskningen som finnes på ILB og manglende behandlingsalternativ for pasienten.&quot;],&quot;markup&quot;:[0]}],&quot;blockType&quot;:[0,&quot;paragraph&quot;]}]]],&quot;type&quot;:[0,&quot;fact&quot;]}],&quot;type&quot;:[0,&quot;news&quot;]}\" renderer-url=\"https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/client.B4ukvwq6.js\" ssr uid=\"ZlDS1Y\"><div class=\"_factbox_16v91_30 layout-component layout-normal\"><section aria-expanded=\"false\" aria-label=\"Utvid\" class=\"_box_1mfx9_1 font-vg-sans layout-component layout-normal _box_16v91_39\" id=\"«r197R0»\" role=\"region\" style=\"max-height:var(--height)\"><h2 class=\"_title_16v91_25 title-serif-s\">Prøves i svensk rett</h2><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 _paragraph_16v91_10 layout-component text-serif-m layout-normal text-sans-m layout-padded\">Björn Pilström som er administrerende direktør og medisinsk direktør ​ i Tikomed, bekrefter overfor VG at<strong class=\"_strong_o9xde_25\"> </strong>ILB kun er testet for effekt i to små <abbr class=\"_explanation_o9xde_140\" tabindex=\"0\" title=\"I en fase 2-studie deltar flere pasienter. Man undersøker blant annet effekt, om bivirkninger er akesptable og trygghet for pasienten.\"><strong class=\"_strong_o9xde_25\">fase 2-studier </strong><span aria-hidden=\"true\" class=\"text-sans-s _title_o9xde_151 _title_16v91_25\" role=\"presentation\"><span class=\"text-serif-l _word_o9xde_156\"><strong class=\"_strong_o9xde_25\">fase 2-studier </strong></span>I en fase 2-studie deltar flere pasienter. Man undersøker blant annet effekt, om bivirkninger er akesptable og trygghet for pasienten.</span></abbr>med totalt 24 pasienter. Det er også testet for sikkerhet i fire <abbr class=\"_explanation_o9xde_140\" tabindex=\"0\" title=\"En fase 1-studie er første gang en ny behandling testes på mennesker. Målet er å finne ut om behandlingen er trygg,  eventuelle bivirkninger og dose medsin. Det er ofte få deltakere. \"><strong class=\"_strong_o9xde_25\">fase 1-studier</strong><span aria-hidden=\"true\" class=\"text-sans-s _title_o9xde_151 _title_16v91_25\" role=\"presentation\"><span class=\"text-serif-l _word_o9xde_156\"><strong class=\"_strong_o9xde_25\">fase 1-studier</strong></span>En fase 1-studie er første gang en ny behandling testes på mennesker. Målet er å finne ut om behandlingen er trygg,  eventuelle bivirkninger og dose medsin. Det er ofte få deltakere. </span></abbr>. Sammenlagt har drøyt 90 pasienter deltatt. </p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 _paragraph_16v91_10 layout-component text-serif-m layout-normal text-sans-m layout-padded\">– Jeg har ingen mening om myndighetens vurdering av hvorvidt bruk av ILB kan anses forsvarlig, men det er likevel verdt å merke seg at Oslo universitetssykehus har startet sin randomiserte fase 2-studie med litt over 100 pasienter, der den ene behandlingsgruppen får ILB, sier Pihlstrøm. </p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 _paragraph_16v91_10 layout-component text-serif-m layout-normal text-sans-m layout-padded\">I en randomisert fase 2-studie blir pasientene tilfeldig fordelt mellom ulike behandlinger for å undersøke effekt og bivirkninger.</p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 _paragraph_16v91_10 layout-component text-serif-m layout-normal text-sans-m layout-padded\">Pilstrøm bekrefter at også det svenske Legemiddelverket har avslått søknader fra ALS-pasienter som ønsker å bruke ILB. </p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 _paragraph_16v91_10 layout-component text-serif-m layout-normal text-sans-m layout-padded\">– Dette prøves nå for svensk domstol, sier han.</p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 _paragraph_16v91_10 layout-component text-serif-m layout-normal text-sans-m layout-padded\">I Forvaltningsretten i Sverige er det nylig avsagt dom mot legemiddelverket. En ALS-pasient fikk avslag på å bruke ILB på lisens og gikk til sak. Retten stilte spørsmål ved avgjørelsen og ba legemiddelverket vurdere saken på nytt. Begrunnelsen er forskningen som finnes på ILB og manglende behandlingsalternativ for pasienten.</p><button aria-controls=\"«r197R0»\" class=\"_button_6bkpv_2 button-label-large _hug_6bkpv_81 _filled_6bkpv_106 _button_1mfx9_76\" data-track-element-type=\"Factbox\" data-track-id=\"factbox:proeves-i-svensk-rett\" data-track-impression=\"true\" data-track-name=\"Prøves i svensk rett\" role=\"button\" type=\"button\"><span>Vis <!-- -->mer</span></button></section></div><!--astro:end--></astro-island><h2 class=\"_heading_o9xde_1 _heading_xtcu6_1 _heading_1rauo_1 layout-component text-serif-m layout-normal layout-padded\" id=\"– Gis ingen sjanse\"> – Gis ingen sjanse</h2><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">Kjartan Børdal Hovgaard (52) er alvorlig ALS-syk. Via lege har også han søkt om å få bruke ILB. Kjartan har vært selvstendig næringsdrivende innen fiskeoppdrett hjemme i Sogndal. </p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">Han er samboer og tenåringspappa.</p><astro-island await-children client=\"visible\" component-export=\"Image\" component-url=\"https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/Image.r_XTj6LO.js\" opts=\"{&quot;name&quot;:&quot;Image&quot;,&quot;value&quot;:true}\" prefix=\"r201\" props=\"{&quot;alt&quot;:[0],&quot;caption&quot;:[0,&quot;KJEMPER: Kjartan Børdal Hovgaard (t.h) er familiefar og pappa til tenåringer. Han er alvorlig syk med ALS. Broren Hektor og familien gjør alt de kan for å støtte ham. Kjartan får heller ikke medisinen ILB.   Foto: Privat&quot;],&quot;device&quot;:[0],&quot;editorialJudgment&quot;:[0],&quot;imageAsset&quot;:[0,{&quot;id&quot;:[0,&quot;6298afdc-fdc7-404f-aeeb-070b4a78206a&quot;],&quot;size&quot;:[0,{&quot;width&quot;:[0,1400],&quot;height&quot;:[0,1600]}],&quot;urls&quot;:[1,[[0,{&quot;height&quot;:[0,46],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/6298afdc-fdc7-404f-aeeb-070b4a78206a?format=auto&amp;w=40&amp;s=374a703877a0599e179cffa0fe5dc95c8cb13f76&quot;],&quot;width&quot;:[0,40]}],[0,{&quot;height&quot;:[0,91],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/6298afdc-fdc7-404f-aeeb-070b4a78206a?format=auto&amp;w=80&amp;s=e8f7e2c4a474d79b22b4bfebcf3c493d99435399&quot;],&quot;width&quot;:[0,80]}],[0,{&quot;height&quot;:[0,114],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/6298afdc-fdc7-404f-aeeb-070b4a78206a?format=auto&amp;w=100&amp;s=b5c9fba4fa24f19afb753555abbe6001edc8335d&quot;],&quot;width&quot;:[0,100]}],[0,{&quot;height&quot;:[0,229],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/6298afdc-fdc7-404f-aeeb-070b4a78206a?format=auto&amp;w=200&amp;s=3bdcf67fbcbae1164f3bb6c202d11c998d906d20&quot;],&quot;width&quot;:[0,200]}],[0,{&quot;height&quot;:[0,274],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/6298afdc-fdc7-404f-aeeb-070b4a78206a?format=auto&amp;w=240&amp;s=a2e452d20a85720025411da50daea74b9a52d1e7&quot;],&quot;width&quot;:[0,240]}],[0,{&quot;height&quot;:[0,549],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/6298afdc-fdc7-404f-aeeb-070b4a78206a?format=auto&amp;w=480&amp;s=dd73f476a326371b5ce7a6b89a09ef8aa3567e1d&quot;],&quot;width&quot;:[0,480]}],[0,{&quot;height&quot;:[0,663],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/6298afdc-fdc7-404f-aeeb-070b4a78206a?format=auto&amp;w=580&amp;s=60e06538ee4a31d6b67c5c5042e93abf747acbb1&quot;],&quot;width&quot;:[0,580]}],[0,{&quot;height&quot;:[0,823],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/6298afdc-fdc7-404f-aeeb-070b4a78206a?format=auto&amp;w=720&amp;s=9981f2c65b2f51650c8952f28fbb49a6266cd8bf&quot;],&quot;width&quot;:[0,720]}],[0,{&quot;height&quot;:[0,1234],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/6298afdc-fdc7-404f-aeeb-070b4a78206a?format=auto&amp;w=1080&amp;s=c181122072c287c9d3b3829987c9b425d18a403e&quot;],&quot;width&quot;:[0,1080]}]]]}],&quot;layout&quot;:[0],&quot;marginBottom&quot;:[0],&quot;padded&quot;:[0],&quot;type&quot;:[0,&quot;news&quot;]}\" renderer-url=\"https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/client.B4ukvwq6.js\" ssr uid=\"Z28cVD5\"><figure class=\"_figure_qp4xg_1 layout-component layout-normal\"><img alt=\"KJEMPER: Kjartan Børdal Hovgaard (t.h) er familiefar og pappa til tenåringer. Han er alvorlig syk med ALS. Broren Hektor og familien gjør alt de kan for å støtte ham. Kjartan får heller ikke medisinen ILB.   Foto: Privat\" class=\"_image_qp4xg_65 layout-component layout-normal\" data-fullscreen-sizes=\"(min-width: 1000px) 2000px, 2000vw\" data-track-element-type=\"Article image fullscreen\" data-track-name=\"ImageFullscreen\" decoding=\"async\" height=\"1600\" itemprop=\"image\" loading=\"lazy\" sizes=\"(min-width: 980px) 980px, 100vw\" src=\"https://akamai.vgc.no/v2/images/6298afdc-fdc7-404f-aeeb-070b4a78206a?format=auto&amp;w=40&amp;s=374a703877a0599e179cffa0fe5dc95c8cb13f76\" srcset=\"https://akamai.vgc.no/v2/images/6298afdc-fdc7-404f-aeeb-070b4a78206a?format=auto&amp;w=40&amp;s=374a703877a0599e179cffa0fe5dc95c8cb13f76 40w, https://akamai.vgc.no/v2/images/6298afdc-fdc7-404f-aeeb-070b4a78206a?format=auto&amp;w=80&amp;s=e8f7e2c4a474d79b22b4bfebcf3c493d99435399 80w, https://akamai.vgc.no/v2/images/6298afdc-fdc7-404f-aeeb-070b4a78206a?format=auto&amp;w=100&amp;s=b5c9fba4fa24f19afb753555abbe6001edc8335d 100w, https://akamai.vgc.no/v2/images/6298afdc-fdc7-404f-aeeb-070b4a78206a?format=auto&amp;w=200&amp;s=3bdcf67fbcbae1164f3bb6c202d11c998d906d20 200w, https://akamai.vgc.no/v2/images/6298afdc-fdc7-404f-aeeb-070b4a78206a?format=auto&amp;w=240&amp;s=a2e452d20a85720025411da50daea74b9a52d1e7 240w, https://akamai.vgc.no/v2/images/6298afdc-fdc7-404f-aeeb-070b4a78206a?format=auto&amp;w=480&amp;s=dd73f476a326371b5ce7a6b89a09ef8aa3567e1d 480w, https://akamai.vgc.no/v2/images/6298afdc-fdc7-404f-aeeb-070b4a78206a?format=auto&amp;w=580&amp;s=60e06538ee4a31d6b67c5c5042e93abf747acbb1 580w, https://akamai.vgc.no/v2/images/6298afdc-fdc7-404f-aeeb-070b4a78206a?format=auto&amp;w=720&amp;s=9981f2c65b2f51650c8952f28fbb49a6266cd8bf 720w, https://akamai.vgc.no/v2/images/6298afdc-fdc7-404f-aeeb-070b4a78206a?format=auto&amp;w=1080&amp;s=c181122072c287c9d3b3829987c9b425d18a403e 1080w\" style=\"object-position:0% 0%\" width=\"1400\"><figcaption class=\"text-sans-s _caption_qp4xg_10 layout-component layout-padded\">KJEMPER: Kjartan Børdal Hovgaard (t.h) er familiefar og pappa til tenåringer. Han er alvorlig syk med ALS. Broren Hektor og familien gjør alt de kan for å støtte ham. Kjartan får heller ikke medisinen ILB.   Foto: Privat</figcaption></figure><!--astro:end--></astro-island><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">Friluftsmannen var vant til å ferdes til fjells. I 2017 begynte han å snuble på stiene. </p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">En venn døde av ALS i 2019. Kjartan var kjent med sykdomstegnene. </p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">ALS rammet hardt.</p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\"><strong class=\"_strong_o9xde_25\">– ILB er godkjent for prosjektet ved OUS. Men det godkjennes ikke for pasienter som er så syke at de har kort tid igjen hvis de ikke får medisinen. Det er blankt nei. I Norge er det mange ALS-pasienter som ikke gis en sjanse til å overleve, sier Hektor Hovgaard, Kjartans bror. </strong></p><astro-island await-children client=\"visible\" component-export=\"Image\" component-url=\"https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/Image.r_XTj6LO.js\" opts=\"{&quot;name&quot;:&quot;Image&quot;,&quot;value&quot;:true}\" prefix=\"r206\" props=\"{&quot;alt&quot;:[0],&quot;caption&quot;:[0,&quot;FRILUFTSMANN: Kjartan Børdal Hovgaard begynte å snuble på stiene i fjellet. Det var startet på svært alvorlig sykdom.   Foto: Privat&quot;],&quot;device&quot;:[0],&quot;editorialJudgment&quot;:[0],&quot;imageAsset&quot;:[0,{&quot;id&quot;:[0,&quot;2bf18d07-5e1d-4319-ac38-eb952d37b68b&quot;],&quot;size&quot;:[0,{&quot;width&quot;:[0,1599],&quot;height&quot;:[0,1049]}],&quot;urls&quot;:[1,[[0,{&quot;height&quot;:[0,26],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=40&amp;s=c9f2430ea493e95b3cb80eda1471341aceb61827&quot;],&quot;width&quot;:[0,40]}],[0,{&quot;height&quot;:[0,52],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=80&amp;s=0b5ef7417d7ce749329b70f80a46478942963170&quot;],&quot;width&quot;:[0,80]}],[0,{&quot;height&quot;:[0,66],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=100&amp;s=54e4ec22850a5a1c24afa83e47276f0e0b84b901&quot;],&quot;width&quot;:[0,100]}],[0,{&quot;height&quot;:[0,131],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=200&amp;s=16a980425ce1b08669adabd346dd3fb5e0df011c&quot;],&quot;width&quot;:[0,200]}],[0,{&quot;height&quot;:[0,157],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=240&amp;s=5f6ca8e1f7c8d8ce51b74f44fd7ddbecec4a52da&quot;],&quot;width&quot;:[0,240]}],[0,{&quot;height&quot;:[0,315],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=480&amp;s=02e8f312aa8d0061769f541b58900d6a0505d09b&quot;],&quot;width&quot;:[0,480]}],[0,{&quot;height&quot;:[0,381],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=580&amp;s=4a9b46fad181c32b8a201b60524ce3b265e6295f&quot;],&quot;width&quot;:[0,580]}],[0,{&quot;height&quot;:[0,472],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=720&amp;s=0dacb759ba74fc969c8009f6663d76740e962da0&quot;],&quot;width&quot;:[0,720]}],[0,{&quot;height&quot;:[0,709],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=1080&amp;s=505816e86c9a39dcd8128247fdbaaa95c822e4b7&quot;],&quot;width&quot;:[0,1080]}],[0,{&quot;height&quot;:[0,945],&quot;url&quot;:[0,&quot;https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=1440&amp;s=8b6a2cdfd823618b5604dd83d82b1d53f8854070&quot;],&quot;width&quot;:[0,1440]}]]]}],&quot;layout&quot;:[0],&quot;marginBottom&quot;:[0],&quot;padded&quot;:[0],&quot;type&quot;:[0,&quot;news&quot;]}\" renderer-url=\"https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/client.B4ukvwq6.js\" ssr uid=\"Z1C6yzA\"><figure class=\"_figure_qp4xg_1 layout-component layout-normal\"><img alt=\"FRILUFTSMANN: Kjartan Børdal Hovgaard begynte å snuble på stiene i fjellet. Det var startet på svært alvorlig sykdom.   Foto: Privat\" class=\"_image_qp4xg_65 layout-component layout-normal\" data-fullscreen-sizes=\"(min-width: 1000px) 2000px, 2000vw\" data-track-element-type=\"Article image fullscreen\" data-track-name=\"ImageFullscreen\" decoding=\"async\" height=\"1049\" itemprop=\"image\" loading=\"lazy\" sizes=\"(min-width: 980px) 980px, 100vw\" src=\"https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=40&amp;s=c9f2430ea493e95b3cb80eda1471341aceb61827\" srcset=\"https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=40&amp;s=c9f2430ea493e95b3cb80eda1471341aceb61827 40w, https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=80&amp;s=0b5ef7417d7ce749329b70f80a46478942963170 80w, https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=100&amp;s=54e4ec22850a5a1c24afa83e47276f0e0b84b901 100w, https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=200&amp;s=16a980425ce1b08669adabd346dd3fb5e0df011c 200w, https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=240&amp;s=5f6ca8e1f7c8d8ce51b74f44fd7ddbecec4a52da 240w, https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=480&amp;s=02e8f312aa8d0061769f541b58900d6a0505d09b 480w, https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=580&amp;s=4a9b46fad181c32b8a201b60524ce3b265e6295f 580w, https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=720&amp;s=0dacb759ba74fc969c8009f6663d76740e962da0 720w, https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=1080&amp;s=505816e86c9a39dcd8128247fdbaaa95c822e4b7 1080w, https://akamai.vgc.no/v2/images/2bf18d07-5e1d-4319-ac38-eb952d37b68b?format=auto&amp;w=1440&amp;s=8b6a2cdfd823618b5604dd83d82b1d53f8854070 1440w\" style=\"object-position:0% 0%\" width=\"1599\"><figcaption class=\"text-sans-s _caption_qp4xg_10 layout-component layout-padded\">FRILUFTSMANN: Kjartan Børdal Hovgaard begynte å snuble på stiene i fjellet. Det var startet på svært alvorlig sykdom.   Foto: Privat</figcaption></figure><!--astro:end--></astro-island><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">Hans nærmeste familie reagerer sterkt på at pasienter med alvorlig eller livstruende sykdom ikke får tilgang til et lovende legemiddel, når det ikke finnes andre behandlingsalternativer. </p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">– Hvorfor bruker man ikke bestemmelsen som gir tidlig tilgang til nye medisiner? Og hvordan kan den samme medisinen være farlig utenfor en studiesetting, men trygg innenfor? Uten medisin dør Kjartan om kort tid, sier hans bror. </p><div class=\"advertory-vg-netboard-wrapper__article\"><div class=\"advertory-vg-netboard__article\" id=\"netboard_9\"></div></div><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\">Advokat Max Henrik Jespersen ved Elden Advokatfirma, har på vegne av Kjartan Børdal Hovgaard klaget Direktoratet for medisinske produkter (DMP) inn for Helse- og omsorgsdepartementet.</p><p class=\"_paragraph_o9xde_4 _paragraph_xtcu6_10 layout-component text-serif-m layout-normal text-serif-m layout-padded\"><em class=\"_em_o9xde_35\">Vil du lese mer om helse og trening? VGs magasin Helse består av 100 sider om kroppen, formen og hodet – og kan kjøpes i <a class=\"_link_o9xde_39\" href=\"https://butikk.vg.no/products/vg-helse-januar-2026\">vår nettbutikk (fri frakt!)</a></em></p><astro-island await-children client=\"visible\" component-export=\"Image\" component-url=\"https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/Image.r_XTj6LO.js\" opts=\"{&quot;name&quot;:&quot;Image&quot;,&quot;value&quot;:true}\" prefix=\"r212\" 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renderer-url=\"https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/client.B4ukvwq6.js\" ssr uid=\"ZBzV7d\"><figure class=\"_figure_qp4xg_1 layout-component layout-normal\"><img alt=\"\" class=\"_image_qp4xg_65 layout-component layout-normal\" data-fullscreen-sizes=\"(min-width: 1000px) 2000px, 2000vw\" data-track-element-type=\"Article image fullscreen\" data-track-name=\"ImageFullscreen\" decoding=\"async\" height=\"1129\" itemprop=\"image\" loading=\"lazy\" sizes=\"(min-width: 980px) 980px, 100vw\" src=\"https://akamai.vgc.no/v2/images/25951537-7686-49dc-8ea8-404e1a212bd6?format=auto&amp;w=40&amp;s=7f527f11a53c27fe2361ad999448a621ec3e2215\" srcset=\"https://akamai.vgc.no/v2/images/25951537-7686-49dc-8ea8-404e1a212bd6?format=auto&amp;w=40&amp;s=7f527f11a53c27fe2361ad999448a621ec3e2215 40w, https://akamai.vgc.no/v2/images/25951537-7686-49dc-8ea8-404e1a212bd6?format=auto&amp;w=80&amp;s=17530fddc57b822472380866a76a341be3d103de 80w, https://akamai.vgc.no/v2/images/25951537-7686-49dc-8ea8-404e1a212bd6?format=auto&amp;w=100&amp;s=3e75473aca31a8652f4a5247631cb3ae7922b0d4 100w, https://akamai.vgc.no/v2/images/25951537-7686-49dc-8ea8-404e1a212bd6?format=auto&amp;w=200&amp;s=9ca8063c8b0f20fb6e3e24aa1b664b8b58bf396e 200w, https://akamai.vgc.no/v2/images/25951537-7686-49dc-8ea8-404e1a212bd6?format=auto&amp;w=240&amp;s=a39f569a2c1766edc289093ff7b003f68150c43a 240w, https://akamai.vgc.no/v2/images/25951537-7686-49dc-8ea8-404e1a212bd6?format=auto&amp;w=480&amp;s=06d35916177296c8ddc89a2c431fe9c1f92e3cfd 480w, https://akamai.vgc.no/v2/images/25951537-7686-49dc-8ea8-404e1a212bd6?format=auto&amp;w=580&amp;s=b93afffe66e1e6b336c5664e6f456f4fa041df9c 580w, https://akamai.vgc.no/v2/images/25951537-7686-49dc-8ea8-404e1a212bd6?format=auto&amp;w=720&amp;s=e8cfff5200969b92868ae37679b99b803b1241f5 720w\" style=\"object-position:0% 0%\" width=\"871\"></figure><!--astro:end--></astro-island>    </section>  <time class=\"text-sans-s _timestamp_ktvrt_1 _full_ktvrt_21 layout-component layout-normal layout-padded\" datetime=\"2026-01-25T08:57:55.000Z\" itemprop=\"datePublished\">Publisert: 25.01.26 kl. 09:57</time>   <footer class=\"font-vg-sans label-secondary layout-component layout-normal layout-padded _tags_xigzw_18\" data-track-element-type=\"Tags\" data-track-id=\"tags\" data-track-impression=\"true\" data-track-name=\"Tags\" data-track-primary-position=\"1\" data-track-target-newsroom=\"vg\"><nav class=\"_nav_xigzw_3\"><ul class=\"_list_xigzw_2\"><li class=\"_item_xigzw_1\"><a class=\"_button_6bkpv_2 button-label-large _filled_6bkpv_106 _tag_xigzw_7\" data-track-id=\"tag:als\" data-track-name=\"ALS\" data-track-secondary-position=\"1\" href=\"/tag/als\">ALS</a></li><li class=\"_item_xigzw_1\"><a class=\"_button_6bkpv_2 button-label-large _filled_6bkpv_106 _tag_xigzw_7\" data-track-id=\"tag:sykdom\" data-track-name=\"Sykdom\" data-track-secondary-position=\"2\" href=\"/tag/sykdom\">Sykdom</a></li><li 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data-astro-cid-jwirc66j role=\"complementary\"> <section class=\"_recirculation_1ppix_1\" data-nosnippet data-test-id=\"recirculation\" data-track-element-type=\"Recirculation\"><h2 class=\"title-serif-s\">Relaterte saker</h2><ul style=\"display: contents\"><li><astro-island await-children client=\"load\" component-export=\"Teaser\" component-url=\"https://www.vg.no/vgc/cdn/vgno/assets/production/_astro/Teaser.DGVdH1e_.js\" opts=\"{&quot;name&quot;:&quot;Teaser&quot;,&quot;value&quot;:true}\" prefix=\"r225\" props=\"{&quot;schemaVersion&quot;:[0,5],&quot;schemaType&quot;:[0,&quot;article&quot;],&quot;id&quot;:[0,&quot;dRgBWz&quot;],&quot;changes&quot;:[0,{&quot;created&quot;:[0,&quot;2025-11-12T09:28:08Z&quot;],&quot;updated&quot;:[0,&quot;2025-12-02T09:48:02Z&quot;],&quot;firstPublished&quot;:[0,&quot;2025-12-01T21:51:26Z&quot;],&quot;published&quot;:[0,&quot;2025-12-01T21:51:26Z&quot;]}],&quot;section&quot;:[0,{&quot;id&quot;:[0,&quot;de434f6e-6c77-438e-aa59-639b118247f7&quot;],&quot;title&quot;:[0,&quot;Forbruker&quot;],&quot;enabled&quot;:[0,true]}],&quot;title&quot;:[0,{&quot;value&quot;:[0,&quot;Patrick (59) fikk sjokk da han tok slankemedisin: – Det var helt vilt&quot;]}],&quot;customProperties&quot;:[0,{&quot;vg_hasSpeechkitAudio&quot;:[0,true],&quot;developing&quot;:[0,false],&quot;presentation&quot;:[0,&quot;news&quot;],&quot;vg_blockSearchEngineIndexing&quot;:[0,false],&quot;articleSummary&quot;:[1,[[0,{&quot;items&quot;:[1,[[0,{&quot;value&quot;:[0,&quot;Patrick Rosengren 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   "source_updated_at" : "2026-01-25 08:29:19",
   "summary" : "Ny forskning gir ALS-pasienter håp. Men alvorlig syke Kirsten og Kjartan får nei til å prøve. ",
   "tags" : null,
   "title" : "Får ikke prøve banebrytende medisin: – Systemet er umenneskelig",
   "twitter_title" : null,
   "version" : 1
}