Making every day count

Cancer patient Silje Morild Helland spends all her time searching for better treatments.

“I want to spend my time doing this. It is not just my life, but many people’s lives. We all want to be here for our loved ones. I have made friends who have the same diagnosis and several of them are not here anymore. People are dying while waiting for important medicines.”

Silje was diagnosed with breast cancer while pregnant in 2015. Since then, she has tried all the treatments that are available to her in Norway. Now, her current treatment is losing effect and Silje feels she has a responsibility to search for more options, since many other cancer patients cannot.

“I think it is problematic that breast cancer patients are assessed according to the average age of the entire patient group. It is said we are too old for the new treatment to be cost effective. It is too expensive in relation to how old we are on the group level, but I am not too old,” Silje said.

Silje told her story at the meeting Fremtidens Kreftbehandling – Hver Dag Teller, Eller? during the Norwegian political festival Arendalsuka. The meeting was organised jointly by Oslo Cancer Cluster, LMI, the Norwegian Cancer Society, Astra Zeneca Norway, Janssen Norway and MSD Norway.

Watch the meeting here:

Is this even legal?

The lawyer Geir Lippestad explained at the meeting that the system called Nye Metoder has been given the legal mandate by publicly appointed officials to decide which medicines will be approved in Norway.

“We do not have any case law or Supreme Court decisions concerning Nye Metoder. This is because it is not possible for patients to appeal decisions that have been made. This is not completely unproblematic. In an open society, the right to appeal is a guarantee for legal safety. This is something we need to debate politically. It is very unusual that there is not a bigger legal framework to appeal.”

Calling for a mission on cancer

Sigrid Bratlie, special advisor in the Norwegian Cancer Society, told the audience about recent advances in the cancer field.

“We are at a breaking point in the development of knowledge and technology. Two areas that are moving especially fast are personalised medicine and immunotherapy.”

Bratlie explained that future cancer treatments will be defined by four characteristics. The treatments will be more personalized and more influenced by advanced technologies. They will be given more in combination with one another, and clinical studies will be an integrated part of standard treatment.

“To realise the potential we have in Norway, we need to invest and set ambitious goals. The European Union has launched a Cancer Mission with the goal to improve the lives of 3 million people by 2030. The USA has the Cancer Moonshot to reduce the death rate from cancer by at least 50 percent over the next 25 years.”

Steinar Thoresen (Merck), Sigrid Bratlie (Kreftforeningen) and Truls Vasvik (Labour Party) discussed access to new cancer treatments. Photo: Sofia Lindén / Oslo Cancer Cluster

What is Norway doing?

Sigbjørn Smeland, Head of the Cancer Clinic at Oslo University Hospital, and Steinar Thoresen, Senior Medical Consultant Merck Oncology and Medical Director NordicRWE, introduced the new initiatives for precision cancer medicine in Norway.

One of them is IMPRESS, a national study where patients with metastatic cancer who have exhausted all treatment options get a chance to try another treatment based on the cancer’s genetic mutation.

Another initiative is CONNECT, a public-private consortium driving the implementation of precision medicine in Norway. Several companies in CONNECT have agreed to contribute pharmaceuticals to the IMPRESS study.

“Precision medicine is one of the pillars of the cancer treatments of the future. We must organise ourselves differently. It requires a closer collaboration between industry and academia. We are looking at the individual patient, instead of groups of patients, which gives us a different type of knowledge base,” Smeland explained.

Steinar Thoresen complemented:

“The industry has gone from being a part, to becoming a partner. For the first time we have a shared risk between private and public. This can be a framework for future payment structures. People have started to say ‘Look to Norway’ and we have no time to lose. We need to collaborate to get more clinical studies, to get more drugs into IMPRESS and to make use of Norwegian health data.”

The politician Truls Vasvik from the Norwegian Labour Party (Arbeiderpartiet) was also at the meeting.

“We need to work together with industry to succeed. We need to establish a system that can handle the extremely rapid changes in cancer treatment. We also need to think new about price models. We have a focus on cancer right now, because many are getting ill, and the development is going extremely fast.”

Silje Morild Helland does not think the system is good enough. If she can’t get new treatment in Norway, she plans on travelling abroad, like many other Norwegian cancer patients already have.

Fremtidens kreftbehandling frokostmøte 2022

Challenged politicians about cancer

Where are the Norwegian political ambitions for cancer treatment? We need more public-private collaboration on cancer.

Breakfast and political conversations on cancer are the hallmark for our meeting series Fremtidens kreftbehandling. On 21 April 2022, health officials, politicians, patient spokespeople and industry representatives met to discuss the future of cancer treatments. They all agreed: we need more public-private collaboration on cancer.

As introduction, Ketil Widerberg, general manager of Oslo Cancer Cluster, presented the results from a recent survey by Kantar of the Norwegian population’s views on health policy. The survey showed a majority want more modern cancer treatments with less side effects at public hospitals. They want the same treatment options as in other Nordic countries. They also think the public health service should pay for cancer treatments that work.

“We believe cancer can go from being a deadly disease to a disease people live well with, but we can’t get new treatments to the patients if the public and private sector don’t work together,” Widerberg said. “When we build roads, we assess the economy on a broader scale than when we assess new treatments. Is this really the kind of politics we want?”

A cancer revolution underway

The people’s wishes are clear, but how can doctors offer more modern treatments to their patients? In the first panel discussion, Anne Karin Rime, president of the Norwegian Medical Association, Jan Frich, deputy CEO of the South-Eastern Regional Health Authority, and Ingrid Stenstadvold Ross, general secretary of the Norwegian Cancer Society discussed how patients can gain access to precision medicine, which means the right treatment to the right patient at the right time.

“We are living in a kind of cancer revolution. There are many extremely promising treatments on the way, especially in precision medicine,” Stenstadvold Ross said. “The current system assesses the cost and effect of a treatment by looking at an average patient group. For lung cancer, it will typically be 60-plus men with a history of smoking, but if I developed lung cancer, my characteristics wouldn’t fit this description.”

Rime argued that these new, revolutionary medicines have made the doctor’s job more complicated.

“The role of the doctor has changed from deciding the best treatment for the patient. Now the doctor also needs to think about society as a whole: what can we afford to treat? It is extremely difficult for a doctor to know there are treatments or diagnostics that may help the patient, which they can’t offer,” said Rime. “Diagnostics become more important now and offering genetic tests to all patients to identify which treatment will work.”

Frich agreed that more precise diagnostics is the solution.

“The key to personalised treatment is good diagnostics,” Frich commented. “The last two-three years, much has happened in personalised medicine. We have created a national plan for advanced diagnostics and set aside resources for this. An infrastructure for precision diagnostics is being built. The CONNECT collaboration with the pharmaceutical industry work on a large clinical study called IMPRESS, which is supported with NOK 60 million from the regional health authorities.”

Make your voice heard

The system needs to change so that patients can take part in the cancer revolution. Gloria Traina is a PhD and advisor at the Specialist Health Section in the Norwegian Ministry of Health and Care Services. They are working on a Strategy for Personalised Medicine to be launched before 2023.

“There has been some success getting precision medicine to Norway and there are many new initiatives, including InPred, IMPRESS and CONNECT. We now see there is a need for a revised strategy,” Traina explained.

More public-private collaboration

While the new strategy materialises, patients are still waiting for access to better treatments. In the debate, politicians were challenged to declare their ambitions for Norway.

”I want to see more political vision. The European Union has launched a Cancer Mission, the goal is to improve the lives of 3 million people by 2030. What are Norway’s ambitions?” Stenstadvold Ross asked.

“We need to look at how we rig the decision-making systems, for example by involving clinicians and patients, how we attract clinical studies and how we implement personalised medicine,” Karl Kristian Bekeng from the Labour Party (Arbeiderpartiet) said. “When it comes to collaboration on new technologies and new medicines, there should be a lot more public-private collaboration. This should not be a replacement of the public health service, but an improvement of the public health service.”

Sylvi Listhaug from the Progress Party Association (Fremskrittspartiet) criticised the decision-making system.

“I think many patients – and the population as a whole – question why Norway is so late in implementing new medicines that can save lives and give better quality of life. I also think there are many desperate doctors, who see there are medicines that can give their patients a better life, which they can’t offer. The way we do this in Norway is completely out-dated. It doesn’t work. We are putting forward a new bill to Parliament now to change the whole system,” Listhaug announced.

Hege Edvardsen, senior adviser in LMI, represented the pharmaceutical industry in the debate and challenged the politicians to become more hands-on.

“We see that political decisions do not agree with what is actually delivered in the health service,” said Edvardsen, “It is important to strengthen the public-private collaboration. We have done a lot in oncology, but we are still struggling to get access to new treatments and we are lagging behind other Nordic countries. We need to consider the entire ecosystem when we talk about these things. If we wish to increase the number of clinical studies and attract research investments to Norway, we must also become better at solving the access part.”

The meeting also included mingling between the participants and the audience, which sparked further conversations and reflections. The debate will continue in our communication channels and at our next meeting during Arendalsuka at Clarion Hotel Tyholmen on 18 August 2022 (08:00-09:30). We hope to see you there!

Watch the meeting here (in Norwegian):



This meeting was a collaboration between Oslo Cancer Cluster, Norwegian Cancer Society, LMI, AstraZeneca, Janssen and MSD.

logos of organising partners


Man on podium talking with sticker saying "cluster collaborations"

The Future of Cancer Treatment

What is the The Future of Cancer Treatment all about?

The seminar series The Future of Cancer Treatment (Fremtidens kreftbehandling in Norwegian) usually has two yearly events, always about new possibilities in cancer treatments, and how Norway can be better equipped to keep up with the rapid developments in precision medicine.

It started as a political meeting in 2015, during a political festival in the southern Norwegian town Arendal. The last seminar was also held in Arendal, 18 August 2021.

You can watch the latest Arendal-event on our YouTube channel: 

A collective effort

The series is a collaboration between Oslo Cancer Cluster, Association of the Pharmaceutical Industry in Norway (LMI), the Norwegian Cancer Society (Kreftforeningen), and the three pharmaceutical companies MSD, AstraZeneca, and Janssen.

Why have the same six partners worked together on the same subject for six years? Part of the answer is the collaboration itself.

The collective effort of hosting these seminars has value to everyone involved. For Oslo Cancer Cluster, facilitating collaborations between members is one of our main functions as a research and industry cluster. In addition, we have a role as a changemaker, in which we aim to improve the framework conditions for cancer innovations in the Norwegian health industry and raising expertise. The Future of Cancer Treatment allows the cluster to act as a changemaker and bring members with common goals together.

At the forefront of cancer care

Behind each seminar, there is of course a great deal of planning. Mattis Dahl Åmotsbakken, Associate Director Policy and Communications at MSD Norway, is one of the permanent members of the planning group, together with the other voices quoted in this article.

“The collaboration between this truly cross-functional team ensures innovative ideas that always are at the forefront of cancer care, constructive exchange and learning for everyone involved, as well as a solid output that both attracts and generates interest among a broad variety of stakeholders,” said Åmotsbakken.

He added that a mature cluster is a well-fitted frame for these kinds of collaborations.

“The fact that Oslo Cancer Cluster is a well-established and experienced cluster ensures efficiency, continuous and profound insights into healthcare policies and a solid perception among stakeholders that output from Oslo Cancer Cluster’s collaborative activities is of high quality and solution minded. The cluster’s accumulated experience and position in the cancer care domain coupled with the continuous generation of innovative ideas make the cluster a unique arena for collaboration and development of actionable solutions to further ameliorate the Norwegian health care system,” said Åmotsbakken.

The common interest

Hege Edvardsen, Senior Advisor at LMI, underlines the variety of audiences the seminars are designed to reach.

“This meeting series is arranged by partners deeply invested in bringing the future of cancer therapies to Norwegian patients, specifically through clinical studies, but also in general. The collaboration ensures that we are looking at this issue from all perspectives, since the meetings are targeted to researchers, clinicians, politicians and government bodies, and also to patients and their next of kin,” said Edvardsen, and added:

“The partnership behind this meeting series is in itself an example of how private-public partnerships can help us challenge each other, build culture and collaboration and together press forward a topic of common interest.”

Astra Zeneca is the second industry partner in the series, and Line Walen, Head of Governmental Affairs at AstraZeneca Norway, has been part of the meeting series planning group for a couple of years.

“The group has a common interest in making effective treatments available for patients and to put focus on obstacles, and suggestions for solutions. It is great to come together among patient organisations, clusters and companies to work towards a common goal on important topics. We hope this seminar series will continue in the years to come, and that this will be a good contribution to the debate on how to make new and effective treatments accessible for the patients who need them,” said Line Walen.

Cancer on the political agenda

The third and final pharmaceutical company involved in the series is Janssen Norway. Marthe Brovold Løberg, Communication and Public Affairs Manager at Janssen, has been part of the planning group since the start in 2015. She said:

“Janssen is very proud to be a collaboration partner in this well-established political meeting series that has highlighted important issues since 2015. We all have a common goal; to secure the best possible cancer treatment, now and in the future, and our focus is to enable fast and equal access to innovative treatment in Norway. Janssen wishes to be a part of the solution for cancer patients. To achieve this, collaboration is key,” said Marthe Brovold Løberg.

Thomas Axelsen, head of the political department at The Norwegian Cancer Society, also part of the planning group, added that cross sectoral collaboration is important for a patient organisation.

“This meeting series has been a great arena for the Norwegian Cancer Society to find common ground and raise important issues together with other actors in a field that is of enormous importance to cancer patients. Even though we sometimes have different perspectives and incentives, most of the time we share a common end goal – and finding together across sectors is both important and necessary for us to succeed at creating better cancer care,” said Thomas Axelsen, and added:

“The most important thing we want to achieve is putting cancer on the political agenda and creating a meeting place where different sectors can come together and offer solutions to existing problems. We want the politicians who attend our meetings to leave with more knowledge, and new input that can lead to needed political action. To some extent I think we have succeeded at this so far.”

Why Arendal

Arendalsuka, the political festival in the southern Norwegian town Arendal, taking place in August, has become an important arena for those who want to improve aspects of Norwegian society and politics. Oslo Cancer Cluster has participated several years to meet key players and accelerate the development of cancer treatments.

There was a natural pandemic pause in Arendalsuka in 2020 but in 2021 the town was once again the hub of politics and organisations for a week in mid-August, and The Future of Cancer Treatment hosted an open breakfast seminar about health data – from politics to clinics.


About Cluster Collaborations

In an article series called Cluster Collaborations, we want to highlight the fruitful collaborations in the cluster, underlining the very essence of what Oslo Cancer Cluster is all about, from cancer research to cure.


LEGEN OG PASIENTEN: Fra venstre møteleder Siri Lill Mannes, kreftpasient Kjetil og lege Andreas Stensvold.

Evaluerer Nye metoder: – Tar arbeidet på største alvor

– Evalueringen av Nye metoder er viktig for så mange, og det handler om liv og helse. Så vi går til dette arbeidet med stort alvor, sier Jens Plathe, prosjektleder i Proba samfunnsanalyse.

Jens Plahte, Proba Samfunnsanalyse

Jens Plahte, Proba Samfunnsanalyse

– Vi må velge ut noen enkeltsaker som dels kan belyse når systemet fungerer etter hensikten, og saker som kan belyse hvordan systemet fungerer når det settes under stress. Vi har fått mange innspill fra referansegruppen, og fortsetter å samle inn data frem til sommeren. Innen utgangen av oktober skal vi levere sluttrapporten, sa Plathe.

Han var invitert til å fortelle om prosjektet på årets første møte i møteserien Fremtidens kreftbehandling, der temaet var nettopp evalueringen av Nye metoder. Møteserien er i flere år blitt arrangert av Kreftforeningen, Oslo Cancer Cluster og LMI, i samarbeid med Janssen, MSD og AstraZeneca.

Her kan du se hele møtet

Kreftpasient Kjetil betalte gentesten selv

Evalueringen av systemet, som så mange er enige om at må forbedres, har vakt stor interesse, og det digitale møtet samlet rundt 370 deltakere rundt i hele landet. Vi fikk også høre historien til Kjetil, som har prostatakreft, og hvordan han sammen med legen sin, Andreas Stensvold, har funnet stadig nye måter å teste ut nye medisiner på – også delvis på tross av systemet – slik at han fortsatt er i live i dag. Historien hans sier noe om hvordan systemet, slik det er rigget i dag, har fått konsekvenser for pasientene og deres – til tider – kronglete vei til riktig behandling.

– Jeg har kjent Kjetil i mange år, og han har gjennomgått alt av standardbehandling, både cellegift og godkjente medisiner. Men disse virket veldig dårlig.  Det var tydelig at Kjetil ikke var en standardpasient, så vi måtte tenke på en annen måte, og gjøre flere undersøkelser – blant annet genanalyser. Men han disse måtte han betale for selv, forteller Stensvold.

Blant annet ville de finne ut om Kjetil hadde en genprofil som tilsa at han trengte en medisin som var beregnet på brystkreft, ikke prostatakreft. For Kjetil var det ikke vanskelig å ta valget om å betale for gentesten selv.

– Det var ikke noe annet alternativ enn å finne de pengene. Det begynte å se mørkt ut, så det var min eneste mulighet, sier han.

Da resultatene fra gentesten kom fra USA, satte Kjetil seg i bilen og kjørte hjem til legen sin for å levere resultatene.

– Vi endte med en off label-behandling, det vil si at Kjetil fikk en medisin som er godkjent i Norge, men til en annen kreftform. Og dette var ikke en avgjørelse jeg tok alene, den ble tatt etter en grundig juridisk og etisk vurdering. Det var også et kostnadsaspekt her, for hvis vi hadde sagt nei til off label-behandlingen måtte Kjetil ha betalt medisinen av egen lomme, sier Stensvold.

Behandlingen, som er en kombinasjonsbehandling med to immunterapier, startet de med i oktover 2020, og i løpet av få uker merket Kjetil at klumpene ved kragebeinet var borte. I desember var PSA-verdiene så lave at de ikke var målbare. Kreftlege Stensvold er rørt.

– Jeg har utsatt Kjetil for bivirkninger og nerveskader med de tidligere behandlingene. Men ingenting er likevel hyggeligere enn å se at nå har kreftsvulstene forsvunnet. Det er første gang siden 2014 at vi ikke ser noen metastaser hos ham, nesten alle kreftsvulster har forsvunnet. Det er veldig gøy, og man blir litt rørt selv, sier legen.

Men han etterlyser et bedre system, med mulighet for genanalyser og persontilpasset behandling. Noe er allerede på vei, men det er på overtid.

– Vi tilbyr behandlinger som ikke har effekt, fordi ny behandling er for dyr eller av andre grunner får nei i Nye metoder. Jeg syns danskene har et godt system der fagpersoner er dypt involvert, og der er det åpenhet og transparens om beslutningene, sier Stensvold.

Evalueringen skal besvare to hovedspørsmål

Prioriteringssystemet Nye metoder ble etablert i 2013, og har hatt noen «startproblemer» som etter 7 år ikke lenger kan kalles startproblemer. Myndighetene har derfor bestemt at systemet skal evalueres, og Helse og omsorgsdepartementet ga Proba evalueringsoppdraget. Proba har knyttet til seg Institutet för Hälso- och Sjukvårdsekonomi (IHE) i Lund i Sverige, samt flere uavhengige forskere: professor Kristin Bakke Lysdahl ved Universitetet i Sørøst-Norge, professor emeritus Ivar Sønbø Kristiansen og professor emeritus Aslak Syse. Professor Olav Helge ved Universitetet i Tromsø og førsteamanuensis Anne Kjersti Befring fra Universitetet i Oslo er eksterne kvalitetssikrere. I tillegg har Proba opprettet en rådgivende referansegruppe med 14 medlemmer som representerer pasientene, industrien, sykehusene, myndighetene og andre aktører.

Sluttrapporten Proba skal levere, skal besvare to hovedspørsmål.

Er dagens organisering og saksbehandlings¬proses¬ser i sys¬temet hensiktsmessig utformet og egnet til å oppnå de fastsatte målene?

Og er sys¬temet rustet til å møte fremtidens medisinsk-teknologiske utvikling, herunder utvikling av persontilpas¬set medisin?

Stor enighet om utfordringene

Hva er utfordringene med Nye metoder? Det er stor enighet om at tiden det tar, mangelen på åpenhet og hvordan usikre data i studier med presisjonsmedisin skal håndteres, er blant de viktigste. Også behovet for alternative prisløsninger går igjen i ønskene. Nederst i saken kan du se videoer der alle møtearrangørene fremhever de tre viktigste sakene de mener evalueringen av Nye metoder bør ta for seg.

Revolusjonen de siste årene, med immunterapier, målrettede behandlinger og genterapier, gjør at behandlingsmulighetene overstiger tilgjengelige ressurser, og særlig innen kreftbehandling. Flere av de nye kreftbehandlingene er så lovende at enkelte kreftformer går fra å være dødelige til å kunne leves godt med, og kanskje til og med bli kurert. Men hvordan skal helsetjenesten, som betalere, og legemiddelindustrien, som leverandører, bli enige om verdien av disse behandlingene når usikkerheten om effektene er så store? Hvordan kan de ulike aktørene bidra til at systemet blir mer rigget for fremtidens kreftbehandling?

Tid og nye dokumentasjonspakker

For Legemiddelverket, som gjør metodevurderingene som ligger til grunn for beslutningene i Nye metoder, gjør de nye avanserte terapiene hverdagen mer utfordrende. Enhetsleder Einar Andreassen sier at deres oppgave er å følge det som står i Prioriteringsmeldingen.

– Vi må vurdere hvilken nytte behandlingen har for pasienten, hvor alvorlig sykdommen er og hvor mye behandlingen koster eller hvor mye vi sparer. Dette vurdere vi hver for seg, og Beslutningsforum veier disse opp mot hverandre. Mest krevende nå er at vi får en dokumentasjonspakke fra firmaene, som viser effektdokumentasjonen, og den opplever vi blir mer sparsom med de nye teknologiene. Det kan det være fornuftige grunner til, andre ganger er det vanskelig å si hvorfor disse er vanskelige å vurdere for oss, sier han.

Færre pasienter i studiene kan være én grunn, men også etiske årsaker, sier han.

– Det vi også opplever er at disse studiene får midlertidig godkjenning i EMA. De godkjenner medisinene på bakgrunn av studier som er gjort på tidligere fase enn før, de fungerer godt i forhold til bivirkningene. Da vil den dokumentasjonen sendes videre til oss, som skal gjøre metodevurdering, og det er da utfordringene kommer. Ikke fordi kvaliteten er dårlig, men fordi den ikke sier like mye som vi er vant til fra før, sier Andreassen.

Han bekrefter at tid er en utfordring.

– Vi bruker de 180 dagene vi har på oss, og vel så det, og det jobber vi for å få ned. Men det handler om vår ressurskapasitet. Det handler også om tiden det tar for industrien å sende inn sin dokumentasjon.

Han sier at Legemiddelverket bør bli bedre til å velge ut hvilke saker de skal bruke tid på, slik at de kan behandle disse enklere og raskere. Her kan europeisk samarbeid, og nordisk samarbeid, gjøre at man kan dele på arbeidsbyrden og ikke gjøre unødvendig dobbeltarbeid.

Styrke testkapasiteten og finne nye betalingsløsninger

Jan Frich, viseadministrerende direktør i Helse Sør-Øst, mener en styrking av kapasiteten innen diagnostikk blir viktig fremover, med tanke på persontilpasset medisin. Han påpekte at det jobbes med å ruste opp dette i sykehusene nå. Han sier at det i mangelen på dokumentasjon i ny behandling blir en glidende grense mellom etablert behandling og utprøvende behandling, og viste i likhet med Karita Bekkemellem (i videoen) til IMPRESS-studien.

– Jeg hørte legemiddelindustrien nevne IMPRESS, som er en stor plattform for å prøve ut utprøvende behandling og samle dokumentasjon. Det er positivt å høre at industrien er med på dette, og vil bidra. Det har vi ønsket oss, at vi kan stå sammen for å bli bedre, sa Frich.

Også Frich mener industrien må levere dokumentasjon raskere.

– Jeg er enig i at vi skal prøve alt vi kan for å få saksbehandlingstiden ned, men noen ganger er det vårt system som er årsaken, men en god del ganger er det også industrien som ikke sender dokumentasjon. Så vi venter og venter på dokumentasjon, som kanskje ikke finnes. I noen av disse studiene er det kanskje 10-15 pasienter, sier Frich.

På spørsmål fra ordstyrer Siri Lill Mannes svarte han også på behovet for nye pris- og betalingsløsninger.

– Ja vi må lage forutsigbare finansieringsløsninger, slik at industrien blir mer på en løsning. Der må vi lage en ny modell for finansiering. Det blir en viktig nyskaping.

Politisk enighet

Tuva Moflag fra Arbeiderpartiet og Marianne Synnes fra Høyre var enige om det meste da de diskuterte temaene i en paneldebatt mot slutten av møtet. Blant annet er de helt enige om at de må se på det jurist Marianne Hammer tok opp, nemlig at pasienter i praksis har fått redusert sin rett til individuell vurdering fordi lovverket er så vanskelig å forstå.

– Vi må vurdere å endre lovteksten på det som går på pasientrettigheter. Dette er interessant for oss å se videre på, vi som tross alt er lovgivere, sa Moflag.

Hun mener evalueringen av Nye metoder og Beslutningsforum kommer sent, men godt.

– I fjor ble Beslutningsforum lovfesta. Vi ønsket at Beslutningsforum skulle evalueres før det ble lovfestet. De legger blant annet i for stor grad vekt på gruppetenkning. Hvis en kvinne på 30 år får en kreftform som vanligvis rammer menn over 75, blir den i systemet ikke funnet kostnadseffektiv. Og vi får stadig flere tilbakemeldinger om det med pris, at den delen vektes for tungt. Det gjelder ikke bare kreftpasienter. Innen MS er standardbehandlingen en gammel kreftmedisin. Det er helt fint hvis det fungerer, men problemet er at vi ikke vil betale for ny medisin til de som ikke har nytte av den gamle medisinen. Da har det gått for langt. Det handler om samspillet mellom pris og individuell vurdering, og det handler om at vi gjør prioriteringer ut fra hvordan dette påvirker sykehusbudsjettene. Hun som ikke får MS-behandlingen må nå få hjemmetjeneste og kan ikke lenger jobbe, sier Moflag, som mener dette bør tas med i det store regnestykket.

Marianne Synnes i Høyre er enig.

– Med evalueringen av Nye metoder kan vi se på nye ting som gjør at vi får til et bedre system likevel. Off label-behandling, at ikke alle vurderinger gjøres på gruppenivå,  og at vi skal implementere persontilpassa medisin. Det kommer til å bli krevende, men det må vi politikere også ta innover oss. Og så syns jeg det var et godt forslag fra Tuva om å se hele samfunnsregnskapet når man tar disse avgjørelsene.

Hege Edvardsen, seniorrådgiver i LMI, er fornøyd med møtet og alle innspillene som kom.

– Både vi i industrien og det offentlige må ta ansvar for å samarbeide bedre, og komme opp med gode løsninger som gjør at pasientene får raskere og bedre tilgang til de innovative medisinene som utvikles av industrien. En innovasjon som ikke tas i bruk er av liten verdi både for pasientene, samfunnet og for industrien, vi må derfor sammen finne løsninger som ivaretar både et bærekraftig helsevesen og næringsinteressene til en av de næringene Norge skal bygge sin fremtid på. Tilgang handler om mer enn bare pris, og industrien ønsker å være en samarbeidspartner både innen kliniske studier, pasienters tilgang til compassionate use og ved innføring av legemidler i standard pasientbehandling, sier Edvardsen.