Cystic fibrosis (CF) is a serious inherited multi-organ disease caused by mutations that cause defects in the transport of salt and water in the body’s cells.
Every year, 8-10 children are born with CF in Norway, and there are now around 370 people (2020) who have the disease.
From 2012, all newborns will be screened for cystic fibrosis via the neonatal screening program.
Both parents must be carriers of the special gene in order for a disease case to develop.
At every pregnancy between two parents with such a similar gene, there is a 25 percent chance that the child has cystic fibrosis.
Approximately 148,000 Norwegians are healthy carriers of the gene that causes cystic fibrosis, but few know that they are carriers before they even have a child with cystic fibrosis.
Source: Norwegian Association for Cystic Fibrosis
–sea view
While cf patients in many other countries, such as Denmark, have long had access to the pills on a blue prescription, the responsible Norwegian body, the Decision Forum, has received harsh criticism for not doing the same.
But on April 25, Winther and the around 400 other Norwegian cf-affected could cheer, after the forum announced that they have entered into an agreement with the American pill manufacturer Vertex.
– Indescribable
When VG spoke to her on Friday, she was shocked.
– It is almost unbelievable, but I have experienced an improvement in life that is indescribable. Last night I slept for the first time in many years, without being woken by my own cough. It is indescribable.
She also says that she now does not need oxygen around the clock.
– It is surreal, but after two days I have today in a quiet period managed without oxygen.
The pills help to dissolve mucus in the lungs which slowly but surely reduces the lung capacity of cf patients.
She says she has never had so much mucus from her lungs as in the last 24 hours.
– It just loosens up, she says happily and adds:
– I sincerely thought I was going to die. Now it may seem as if I have been given life as a gift.
Dilemma
VG has mentioned a number of patients who have experienced sensational progress since they started using the medicine, which they in the open market have paid over 200,000 kroner a month to use.
We first mentioned Winther last summer, where we talked about the dilemma:
She could not afford to buy the tablets while waiting for them to be approved in Norway, while a family in Oslo took off their savings to help their daughter to a better life.
Her lung capacity increased sharply.
– Miracle
So did Christian Lawley. After only a few days, he noticed the progress.
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CONSIDERED A MOVE: VG joined Christian Lawley in Copenhagen, where he planned to move – to gain access to the life-giving pills. There he met cf-affected Jonas Steinmeier (front), who can now live a normal youth life, after he got the pills on a blue prescription. Foto: Live Austgard / VG – I have experienced a miracle, he said to VG in December .
Within a few days, lung capacity increased from 41 to 48 percent and further to 55 percent:
He does not have to move to Denmark and can now live and work normally in Bergen and enjoy life with the baby family.
The Kaftrio pills help to dissolve the mucus that forms in the lungs of CF patients and which slowly but surely destroys the lungs without this medicine.
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HAVE A DREAM: Ellen Winther is chained to a long line to the oxygen machine she is dependent on for large parts of the day. She dreams of a life without. Photo: Helge Mikalsen / VG Although Ellen Winther deliberately lowers the list, she allows herself to dream.
– I hope in the long run that I will not be tied to the oxygen machine. And then I have a dream of doing something I did quite a lot before I got too sick, she says:
– To travel to the South. But to begin with, I just hope that I will eventually have an easier everyday life, where I can finally sleep again for a whole night without coughing and waking up refreshed.
FRP leader Sylvi Listhaug has become involved in the fight for Winther and the CF victims.
– I am so incredibly happy that the cf-sick who have waited far too long, now finally get Kaftrio that they need to be able to breathe normally, she says.
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VISITING: Sylvi Listhaug visited Ellen Winther this autumn. Photo: Helge Mikalsen / VG Listhaug is critical of the process.
– Ellen and others could have had a better life several years ago if Norway had not been so slow to use Kaftrio. It’s provocative to think about. But now we get to enjoy this.
Earlier today, Vertex announced that the reimbursement agreement for Norway has today been completed.
– Glade
Eric Gillberg, head of Vertex in the Nordic region, says in a press release that there will be around 250 CF patients in Norway who will have access to the pills.
– We are pleased that the Norwegian health authorities have recognized the value of these medicines and that approximately 250 people with CF in Norway will now have access to medicines that treat the underlying cause of their disease, he says.
Unknown price
They state that Norway will now be part of the 31 countries, including Denmark, Finland, the Netherlands, Spain, Germany , Austria, Slovenia, Poland, Croatia, Luxembourg, France , Italy and the United Kingdom, which have approved the pills.
They do not state how much the Norwegian authorities have to pay, but the price is expected to be significantly lower than the 227,000 kroner a month, which is the price in the open market.
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