– His life is completely in the hands of Kjerkol and the health authorities, and it is very depressing for him and us, says Lars-Fredrik Karlsen. He is the father of Trym Saugstad Karlsen, who has contracted the very rare blood disease PNH. The disease means that activities that used to be a breeze now lead to exhaustion for several days for the 25-year-old. 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. There is effective treatment, but in autumn 2022 the Decision Forum decided that patients who get the disease after 26 September will no longer receive the drug Soliris, which is the most common. Karlsen is one of these, and according to his father, there are two others in Norway who are in the same situation. At the same time, PNH patients who were diagnosed before September 2022 may continue treatment with the drug. Why are new PNH patients not receiving Soliris? The decision-making forum decides which medicines are to be used in Norway. They work on the basis of three criteria when they assess medicines: Severity Usefulness and effect Resource use Ulrich Johannes Spreng is specialist director at Health South-East and sits on the Ordering Forum. He says the company behind the drug Soliris has not provided documentation of effectiveness, or given a price offer. The pharmaceutical company behind Soliris, Alexion Pharma, writes in an e-mail to news that the medicine has been approved in the USA, the EU and Japan. According to them, they have been in dialogue with the Norwegian authorities since the end of 2022. – We are now awaiting feedback on our latest offer, writes Alexion Pharma’s communications manager, Annabel Cowper. Spreng’s communications advisor denies that they have received such an offer. Anne Sophie von Krogh is a senior physician at St. Olav’s hospital. She says that the professional environment of haematologists in Norway thinks the whole situation is a despairing one. – This is deeply problematic because we have an effective treatment that can change the lives of this patient group, she says. – It would be unfair Health Minister Ingvild Kjerkol says that cases like this make an impression and that she has great sympathy for the family’s finding this difficult. – I fully understand that this situation is difficult for Trym and the family. The health services in Norway depend on legitimacy, and we work for a fair and good system for everyone who needs health care, she says. Minister of Health Ingvild Kjerkol says she fully understands that the situation is difficult for Karlsen and his family. Photo: Emrah Senel / news Nevertheless, Kjerkol points out that it is the Decision Forum that decides which medicines are to be used in Norway. – It would be a fundamentally unfair system if the Minister of Health were to decide this on the basis of an inquiry. She says it is the Decision Forum that must comment on the matter further. – In this case, the supplier has not provided the documentation necessary to make an assessment, while the price is very high. It is up to New methods to assess this in line with the prioritization criteria adopted by the Storting. This is because the health service must look after the various needs of all patients. The pharmaceutical company has previously told news that they have submitted a price offer, from which they await feedback. Hospital purchasing denies that they have received such an offer. – Terrible and heartbroken Bård Hoksrud (Frp) sits in the Storting on the health and care committee. He reacts strongly to the matter. – It is terrible and heartbreaking that the health authorities have decided that Trym and the few others who have been diagnosed with the very rare blood disease PNH will no longer receive the treatment they need to have a good life. Hoksrud says that this is about being able to have the most equal life possible. If not, there is a risk that Karlsen will die at a very young age. Photo: Lars Tore Endresen / news Hoksrud says that time is a resource that many with serious diagnoses do not have. He believes that Norway is slow when it comes to adopting new medicines, compared to other countries in Europe. – People with money can buy medicine and treatment, while ordinary people have to resort to fundraising campaigns or go without treatment. According to him, it leads to a bifurcation of the healthcare system. – It violates the principle we have in Norway of equal access to health services. We need to do something about the system, so that people can access medicines more quickly. – He is scared to death Lars-Fredrik says that they are waiting for a response from the regional subject directors and the Minister of Health. – In the meantime, our son’s health is getting worse, he has fear of death, he has hemolysis, he is waiting for him to have a fatal blood clot. The condition is only getting worse. He also reacts to Kjerkol’s answer to news that it would be a fundamentally unfair system if it were to be decided on the basis of an inquiry. Lars-Fredrik Karlsen is distraught that his son is not getting the medicine he needs. Photo: Private – There is one thing that is unfair here. It is that our son who fell ill in October last year does not receive the same treatment as those who fell ill a couple of months earlier. He points out that those who suffer from PNH and received medicine before September 2022 should continue to receive it. – How fair is it then that the new cases should be denied and thus left to die?
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Got sick “too late” and can’t get medicine – the Minister of Health will not intervene in the case – news Trøndelag
