– I am of course happy that they have decided to take up the case, but I need concrete evidence to be really happy about it, says Trym Saugstad Karlsen – It has been nine months since he was told that he has the very the rare blood disease PNH. Until now, he has not received the treatment he needs, as a result of the decision-making forum’s ruling on the drug Soliris. Exceptions can be made On Wednesday, an extra meeting was held in Bestillerforum where they concluded that the medicine should be reassessed. While the method is being assessed, it is open to the possibility that exceptions can be made for individual patients with PNH. – This means that I can apply to perhaps receive medicine, and there are two other patients who are also in the same situation as me, and they must also apply to receive it. That’s why it feels like a hollow victory, because we don’t know if we’re going to get the medicine, says Karlsen. His father, Lars Fredrik Karlsen, is disappointed that they did not reach a final solution during the meeting. – This was not exactly what we were hoping for. We had hoped that they would have turned around and come to their senses – but that is something, he says. It was in autumn 2022 that the Decision Forum decided that the medicine Soliris should no longer be offered to patients who contracted the disease after 26 September. The reason must have been that it has been too expensive. The health authorities have now received new tenders for the medicine at a significantly lower price, and will make a new assessment. – We are optimists, but it is a bit difficult to believe that this will be resolved overnight, says Karlsen’s father. Struggling with quality of life In Norway, there are around 20 people who suffer from the disease. Only three of them were diagnosed with the disease after 26 September. The chance of Karlsen getting a blood clot is 67 times higher, and there is an increased risk of stroke, kidney failure and liver failure. The blood disease also means that he needs a long time to recover from what used to be simple tasks. When he was healthy, he trained five times a week, climbed outside, jogged and cycled for long trips. Now he can’t do any of this. – After I played the exam concert, I had to lie in bed for two days, because I was so incredibly exhausted and tired, he says. Health Minister Ingvild Kjerkol has previously said that she does not want to break into the case. Previously, she has stated to news that it would be an unfair system if the Minister of Health decided this on the basis of an inquiry.
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Opened up so that patients with PNH can still receive treatment – news Trøndelag
