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– Why should someone go blind when we can avoid it?
Mother Isabell Hagen sits in the family’s newly renovated and adapted house for her visually impaired son in Straumgjerde in Sykkylven Township in Sunnmøre.
She is committed and desperate in the fight for Ulrik and the seven others in Norway who have a mutated version of the Retinitis Pigmentosa (RP) eye disease.
– 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. Unfortunately, the alternative is for him to go blind, say Isabell Hagen and her father, Widar Fure.
Gene therapy
As Ulrik drives the bulldozer, truck, and the other toys on the floor, Mom tells about the shock when he was diagnosed at the age of one and a half.
FRUSTRATED MOTHER: Isabell Hagen is Ulrik’s mother and is now fighting to get her son paid for treatment, which means he doesn’t lose his sight. Photo: Arne Rovick / TV 2
– It has been an effort to discover 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 them, and his vision can probably be saved with the Luxturna treatment on both eyes.
– With the help of gene therapy, doctors can operate viruses with healthy genes on the retina. Healthy genes will spread through the retina and treatment will give the patient better vision in no time, says Isabell Hagen.
But the treatment is very expensive and decision forum The new methods have refused to pay the bill for the price and because there are doubts about the long-term effect of Luxturna. And Health Minister Bent Høie has responded that he cannot review that decision.
FACILITATED: The family has renovated the house and all the lights, surfaces and floor as a play area are adapted to Ulrik’s eye disease. Photo: Arne Rovick / TV 2
– Why does the state prefer that we have eight more blind people in Norway when we don’t need them? All operations may not be successful, but that is the case for all operations. Not everyone is successful, says Ulrik’s mother.
On bare ground
He has mentally prepared himself so that the family will have to raise eight million crowns for their son to receive the treatment that slows the development of the disease. Because the price tag is approx. four million crowns per eye.
READING SCREEN: In kindergarten, Ulrik has an aid that allows him to learn alongside other children. Photo: Arne Rovick / TV 2
– I think it’s absolutely awful. Should we sell everything we have from a house and a cabin, and sit on the bare ground because maybe we should come up with that amount when Ulrik is due for treatment?
She points out that it is about eight people and their dignified lives.
– We will not spend money on this because it is too expensive. Yes, it can be expensive. But it’s also expensive for us, the people who sit here today and have to twist and turn the crown our entire lives because you have to be able to afford this, Isabell sighs.
– Hard to imagine
Most people with RP will be practically blind in their 40s.
Ulrik and the others with the disease have poor night vision and gradually lose more and more field of vision. This can be experienced as if you have binocular vision.
SEE VISION: People with RP get a very narrow field of vision. Normal vision provides a field of view of almost 180 degrees. With RP it can go down to 3 degrees. Photo: Norwegian Association of the Blind
– I do not think that those of us who do not have this diagnosis can imagine what it is like, says Terje André Olsen, union leader of 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
He thinks that it is shocking that the Norwegian health service does not pay for the operation.
– When there is a treatment available that can prevent people from going blind, it should be available. I don’t see this being unprofitable, 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 on time, they will not be blind, says Ragnheidur Bragadottir, specialist doctor and head of the OUS Department of Ophthalmology.
SURGEON: Bragadottir is an approved retinal surgeon and has performed the operation several times abroad. Photo: Truls Aagedal / TV 2
She has researched the method herself for several years and reacts to the fact that Norway will not approve of the treatment.
– We cannot have it so that when we have the opportunity to treat these young people who do not receive that treatment. For 20 years I have been waiting for this to be possible. Now it is possible, see Bragadottir.
Urgent treatment
Co-owner Torger Sætre (28) sits in Isabell’s living room. He has the same diagnosis, but for him it is urgent. The 28-year-old must receive treatment now to save some of the sight in one eye.
After its appearance on TV 2, the joint grossed almost 3.4 million crowns.
SAME DESTINATION: Eight people in Norway have Retinitis Pigmentosa eye disease in a mutated form and three live in Sykkylven municipality. Torger Sætre (right) has raised nearly $ 3.4 million for the treatment he needs to avoid going blind and supports Ulrik and his mother Elizabeth’s fight to have this covered by the public sector. Photo: Arne Rovick / TV 2
– 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’ll have some challenges in life, but he’ll do well if he’s prepared, Torger thinks.
Social accounts
Ulrik should receive treatment at the age of 10 to 12 years. But the fight is taking the family now, and Isabell asks Health Minister Bent Høie, Storting politicians and the Decision Forum the following questions:
– Isn’t it a much higher social cost to have eight blind people than to give them this treatment that allows them to have a job?
The parliamentary representative and incoming leader of the Progress Party, Sylvi Listhaug, proposes to the Storting that this group of patients should have Luxturna covered in Norway or abroad, financed by health trusts.
PROPOSALS: Sylvi Listhaug proposes to the Storting that the Luxturna treatment be covered by the public sector. Photo: Kristian Haug Hansen / TV 2
– I think it is mean and shameful that Norway does not give such treatment, when we see that many other countries do, including Denmark. I think everyone understands how important this is to interested people, says Listhaug.
In a digital gathering with Isabell and her family, she heard Ulrik’s story.
– It makes a great impression on me. It is so important for the family to know that when the day comes when they can receive treatment, the public will come forward. We shouldn’t have it like this in Norway for a family to collect millions of crowns for medical treatment. It is not the case that the wallet should decide this, therefore the public sector must take it, Listhaug tells TV 2.
BREAKING THE ROAD: Ulrik Fure loves construction machines and snowmobiles, and is happy to display the toys at his home on Straumgjerde in Sykkylven in Sunnmøre. Photo: Arne Rovick / TV 2
Listhaug hopes there will be a majority in the Storting to help RP patients.
– I want the politicians to deal with the matter properly. This is not a joke, this is about saving the future for 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. So we must live with the burden that this must be covered by us. It’s just cruel, say Isabell Hagen and her husband Widar.
