STORTING (Dagbladet): In the committee house on Løvebakken, Klaveness and deputy chairperson of the Norwegian Interest Association for the Short, Kristine Juvet, met politicians from the FRP and Patient Focus for an input meeting.
They did so together with a number of other interest organizations for people with rare diseases.
One of the goals is that all of these – even if they are few people with each different diagnosis – should be heard and prioritized to a greater extent when decisions and priorities are made regarding the use of new medicines and treatments in Norway.
Got stamp: – Some activists
Shared personal history
For Klaveness, her involvement as a volunteer has a completely personal reason.
She tells those present that three years have now passed since she became an aunt to a long-awaited boy. But the nephew was born with the diagnosis achondroplasiathe most common form of short stature with changes in the skeleton.
PARTICIPATED: Lise Klaveness and Deputy Speaker Kristine Juvet met at the Storting. Photo: Ingunn Dorholt / Dagbladet
sea view
Klaveness emphasizes the strong love she has for her little nephew, but says that at the same time she has felt a sense of sadness over the possible loss of equal opportunities he will be able to experience throughout his life – a theme she has also worked for for a number of years through her role in the sport.
Juvet and Klaveness explain that there are far more than the most obvious challenges to being short in today’s society.
The diagnosis often leads to a number of other secondary diagnoses such as nerve damage, respiratory arrest and sudden infant death. In addition, they have a very high risk of permanent hearing loss, to name a few.
There is also a high proportion of short people who end up receiving disability benefits in adulthood, and there are also many who struggle with major psychosocial challenges.
There is treatment
For Klaveness, she quickly gained hope. In the same year that the nephew was born, there was good news from Australia: a completely new treatment for this particular diagnosis for children of growing age.
The drug, which has been named of the Vosorites, is referred to as ground-breaking. There are also no known side effects associated with the drug, Klaveness explains.
Until now, there has been no other treatment available than so-called lengthening surgery, a treatment that has been both debated and is known to be painful.
Great need: – Vulnerable
Vosoritide should both increase height, but also reduce the other medical complications of the diagnosis. It also has no proven side effects. The medicine was already approved in the EU in August 2021 and is in use in countries such as France and Germany.
Svein Fredwall is a senior physician at the TRS competence center for rare diseases. He is the foremost expert on achondroplasia in Norway.
– You get a fifty percent increase in height growth per year, and it has also shown an effect on this hole in the skull, where the brain transitions to become the spinal cord, Fredwall recently stated to TV 2.
Norway is waiting
Back home in Norway, Klaveness’s nephew and around 30 other children are still waiting for treatment. First, the cost/benefit effect of the drug must be assessed.
Norway’s national system for medical methods and measures, New Methods, states on its website that it is still waiting to receive documentation from the pharmaceutical company so that the method assessment can begin.
We therefore do not yet know when the drug will be available in Norway, and at what price.
– For us, this is quite new, because there has never been a treatment, says deputy leader Kristine Juvet to Dagbladet.
– How does it feel to wait for this approval?
Warns own government
– You get the feeling that Norway does not use this drug, when other countries we can compare ourselves with do. Norway is supposed to be the best country in the world to live in, so why is it so slow here? What do other countries do that we don’t? asks Juvet.
Klaveness believes that in Norway we have a system that makes cost/benefit assessments very many people with rare diagnoses feel that indirectly discriminates against them.
– In the countries where this drug is in use, others have “early access” schemes which enable them to use it. This is a proven completely safe medicine that also has a proven effect. So what remains is “cost”, i.e. it is money we are talking about. So this is a system that does not take care of those with rare diseases in a good enough way, says Klaveness.
New proposal
Today’s input meeting comes ahead of the FRP’s proposal to the Storting for a national funding pool for rare diseases.
Today, and since the FRP itself was part of the government in 2019, it is the health organizations themselves that are responsible for this funding.
Kim’s last wish: – Everything I want
– The idea was that it was an advantage that this was located locally, i.e. close to these people. But then we see that the treatment is largely dependent on competence, impact on the part of the doctor and a management that believes this is the right priority. Because that must of course be prioritized over everything else in the healthcare institutions. Therefore, we think it is perhaps better that this responsibility lies nationally or regionally, says FRP’s health policy spokesperson, Bård Hoksrud, to Dagbladet.
The proposal will be considered in the health and care committee before the summer.
I The Hurdal platform it says that the Støre government wants to present a new priority notice for the health and care service “which, among other things, assesses personalized medicine and ensures transparency and verifiability around priorities in the health service”.
This will probably be presented in 2024.
FRP wants rarity to also be a criterion in this prioritization message.
