– I feel extremely relieved that we have won this case. This is what we have worked for, says Karlsen. It was last September that the decision-making forum decided that patients diagnosed with the rare blood disease PNH should not receive the medicine Soliris. The reason was that the price was too high. A month later, Karlsen found out that he has the disease, but that he could not get treatment. At the same time, around 22 other PNH patients in Norway, who were diagnosed before September 2022, have been allowed to continue on the medication. Since then, he and his family have fought for him to receive the same treatment. – There is no one I have met who does not believe that this is an unfair case. It is an important matter of principle and it has in a way given us more fuel to continue working, says Karlsen. Hold extraordinary meeting On Wednesday, an extraordinary meeting was held in Bestillerforum where they concluded that the medicine should be reassessed. While the case is under consideration, it was opened up that exceptions can be made for individual patients with PNH. This allowed Karlsen to apply for the medicine, and this is what has now been granted. Karlsen has been told that the hospital will contact him to start the treatment. – It means that I can start living a normal life and I am very much looking forward to that. Everyone I have spoken to who has the disease says that Soliris works very quickly and that you can live symptom-free, he says. Bård Hoksrud (Frp) has become involved in Karlsen’s case. Photo: JOHN-ANDRE SAMUELSEN / JOHN-ANDRE SAMUELSEN – Common sense prevailed Health policy spokesperson in the FRP, Bård Hoksrud, has become involved in the matter by bringing it up in the Storting twice. – It is very gratifying that reason prevailed, and that Trym finally gets the vital treatment he needs, he writes in an e-mail to news. He doesn’t think the case would have gotten this far if it hadn’t been for the efforts of Karlsen and his family. – Although I am happy that Trym is now receiving treatment, it is deeply disturbing that Bestillerforum would probably not open up the possibility that exceptions can be made for individual patients with PNH if it were not for the admirable commitment of Trym and his relatives, he writes . Karlsen plays drums during his graduation concert at NTNU in Trondheim. Photo: Jøte Toftaker / news Will start work This spring, Karlsen completed his education as a jazz musician at NTNU in Trondheim. Now he is looking forward to starting his working life. – Now I’m just going to focus on a normal life and start working as a musician, which is what I want to do, says Karlsen. He extends a big thank you to everyone who has supported him and his family in various ways. – It is good that it is possible to post something so vulnerable on the internet and in the media, and get such good feedback, he says.
ttn-69
Trym Saugstad Karlsen receives treatment for the serious illness PNH – news Trøndelag
