– Why should someone go blind when we can avoid it?
Mother Isabell Hagen is sitting in the family’s newly renovated and adapted home for her visually impaired son in Straumgjerde in Sykkylven municipality in Sunnmøre.
She is both engaged and desperate in the fight for Ulrik and the seven others in Norway who have a mutated version of the eye disease Retinitis Pigmentosa (RP).
– We hope that Ulrik will learn to read and write like all other children and live with the vision he has today, and live a full life. The alternative is unfortunately that he goes blind, says Isabell Hagen and dad Widar Fure.
Gene therapy
While Ulrik handles the excavator, the truck and the other toys on the floor, mum tells about the shock when he was diagnosed at the age of one and a half years.
– FRUSTRATED MOTHER: Isabell Hagen is Ulrik’s mother and is now fighting for her son to be paid for the treatment which means that he does not lose his sight. Photo: Arne Rovick / TV 2
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– It has been a strain to find out what was the reason why Ulrik did not have vision like everyone else.
RP hits the retina and gradually makes the field of view darker and smaller. A total of 1,500 people have been diagnosed with RP in Norway, but only a few have the very rare and mutated variant of the disease. Ulrik is one of these, and his vision can probably be saved with the treatment Luxturna in both eyes.
– With the help of gene therapy, doctors can operate on viruses with healthy genes into the retina. The healthy genes will spread on the retina and in a short time the treatment will give the patient better vision, says Isabell Hagen.
But the treatment is very expensive and decision forum New methods have refused to pay the bill because of the price and because there is doubt about the long-term effect of Luxturna. And Minister of Health Bent Høie has replied that he can not review that decision.
ADJUSTED: The family has refurbished the house and all the lights, surfaces and floor as a playground are adapted to Ulrik’s eye disease. Photo: Arne Rovick / TV 2
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– Why does the State rather want us to have eight more blind people in Norway when we do not need it? It may be that all operations are not successful, but that is the case with all operations. Not everyone is successful, says Ulrik’s mother.
On bare ground
She has mentally prepared herself for the family having to scrape together eight million kroner for her son to receive the treatment that slows down the development of the disease. For the price tag is approx. four million kroner per eye.
READING SCREEN: In kindergarten, Ulrik has an aid that enables him to learn on a par with other children. Photo: Arne Rovick / TV 2
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– I think it’s absolutely awful. Should we sell everything we have of a house and cottage, and sit on bare ground because maybe we should reach that amount when Ulrik must have the treatment?
She points out that this is about eight people and their dignified lives.
– We will not spend money on this because it is too expensive. Yes, it may be expensive. But it is also expensive for us individuals who sit here today and have to twist and turn the crown all their lives because you have to be able to afford this, sighs Isabell.
– Hard to imagine
Most people with RP will be practically blind by the age of 40.
Ulrik and the others with the disease have poor night vision and gradually lose more and more of their field of vision. This can be experienced as having binocular vision.
VISIBLE VISION: People with RP get a very narrowed field of vision. Normal vision gives a field of view of almost 180 degrees. With RP it can be all the way down to 3 degrees. Photo: Norwegian Association of the Blind
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– I do not think we who do not have this diagnosis can imagine what it is like, says Terje André Olsen, union leader in the Norwegian Association of the Blind.
REVIEWERS: The Norwegian Association of the Blind asks the Norwegian health service to review the case and approve the treatment. Photo: Sveinung Kyte / TV 2
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He thinks it is shocking that the Norwegian health service will not pay for the operation.
– When there is available treatment that can prevent people from becoming blind, it should be made available. I do not see that this is not profitable, says Olsen.
Ready to operate
At Oslo University Hospital (OUS), ophthalmologists are ready to perform the procedure, if they receive the green light from the state.
– If these patients are treated in time, they will not have to go blind, says Ragnheidur Bragadottir, specialist and chief physician at the Ophthalmology Department at OUS.
SURGER: Bragadottir is an approved retinal surgeon and has performed the operation several times abroad. Photo: Truls Aagedal / TV 2
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She herself has researched the method for several years, and reacts to the fact that Norway will not approve the treatment.
– We can not have it so that when we have the opportunity to treat these young people that they should not receive that treatment. For 20 years I have been waiting for this to become possible. Now it is possible, Bragadottir sees.
Urgent treatment
In Isabell’s living room sits cohabitant Torger Sætre (28). He has the same diagnosis, but for him it is urgent. The 28-year-old must have the treatment now to save some of the sight in one eye.
After he appeared on TV 2, the splice has collected almost 3.4 million kroner.
SAME FATE: Eight people in Norway have the eye disease Retinitis Pigmentosa in a mutated form and three live in Sykkylven municipality. Torger Sætre (right) has collected almost 3.4 million for the treatment he needs to avoid becoming blind and supports Ulrik and mother Isabel’s fight to get this covered by the public sector. Photo: Arne Rovick / TV 2
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– I am very grateful to everyone who has contributed. We are now approaching the target of NOK 3.9 million. I have to do it. There is no other way out, says Torger.
– I recognize myself in Ulrik’s story. He will have some challenges in life, but he will do well if he is prepared, Torger thinks.
The social accounts
Ulrik must have the treatment at the age of 10-12. But the fight is taking the family now, and Isabell asks the Minister of Health Bent Høie, the politicians in the Storting and the Decision Forum the following questions:
– Is it not a far higher social cost to have eight blind people than to give them this treatment that allows them to have a job?
Parliamentary representative and incoming leader of the Progress Party, Sylvi Listhaug, proposes to the Storting that this patient group should have Luxturna covered in Norway or abroad, financed by the health trusts.
PROPOSES: Sylvi Listhaug proposes to the Storting that the treatment with Luxturna should be covered by the public sector. Photo: Kristian Haug Hansen / TV 2
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– I think it is petty and embarrassing that Norway will not give that treatment, when we see that many other countries do it, including in Denmark. I think everyone understands how important this is for the individuals concerned, says Listhaug.
In a digital meeting with Isabell and her family, she heard Ulrik’s story.
– It makes a great impression on me. It is so important that the family knows that when the day comes that he can get the treatment, that the public will show up. We should not have it like this in Norway for a family to collect millions of kroner for medical treatment. It is not the case that the wallet should decide this, therefore the public sector must take it, Listhaug says to TV 2.
BREAKING THE WAY: Ulrik Fure loves construction machines and snowmobiles, and is happy to show off the toys at home in Straumgjerde in Sykkylven on Sunnmøre. Photo: Arne Rovick / TV 2
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Listhaug hopes that there will be a majority in the Storting to help the RP patients.
– I want the politicians to get to grips with the matter properly. This is no joke, it is about saving the future of all of us who need it, says Torger Sætre.
Of course, Isabell Hagen does too.
– If they still say no, they must assume that we must obtain the funds ourselves. Then we have to live with the burden that this must be covered by us. It’s just cruel, says Isabell Hagen and her husband Widar.
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