Opdatering: 31. Rådsmøde i september d. 26 af Medicinrädet i Danmark

Denne gang er igen Spinraza på dagsorden. Dette er bare en ny holdning til lægemidlet ifølge på nye data.

Den nye JAK-hæmmer Xeljanz, som allerede er godkendt til RA, skal nu også godkendes til psoriasisartrit. Lad os håbe, at dette lægemiddel finder vej til psoriasisartrit-patienter

www.medicinraadet.dk

Spinraza – sagen: Spinraza er for dyrt for Danmark

SMA Patients are still not treated in Denmark with Spinraza

A country catapulted more and more out. Latest catastrophic news reached me!

    1. Case 1:
      Magnus got the offer from the Biogen, he can get his injection directly in Denmark. I think that’s a wonderful gesture from Biogen. The boy would not always have to travel to Belgium.
      But now comes a neurologist and denied him the treatment. For ethical reasons, he gonna can not represent this because other children and adults have no access. Magnus was again denied access.
      Although Magnus is in the EAP program he started in Belgium.  Remember. back Magnus, would have had the opportunity to join the EAP program in Denmark. But instead of Magnus they chose another boy. That was already so hard when the family heard that. The parents of Magnus are struggling desperately since those days. Belgium has included Magnus in its EAP program. He has been getting better and stronger,since those days and he could already  to control his wheelchair again
      Personally, I am so shocked that a doctor may make such a decision! Magnus must continue to travel to Belgium with his parents to ensure his therapy will bee safe
      Meanwhile, this is without words, it feel the anti-empathy against, who sprirde out the state to the family.
    2. Case 2:
      There is Johan 18, he also gets no access
    3. Case 3:
      There are so many children waiting for access. Again, Medicinrådet did not put it on the agenda.

Meanwhile one gets the appearance that one does not want to treat the children and adults at all. They are blocked and will be boycotted all time. For the Danish SMA patients comes a bleak future. I do not think the gene therapies like Zolgensma will be approved.

In Denmark only a handful of children (SMA 1) have access to Spinraza. Magnus is 18 years old and has SMA Type1. Thus, he is the oldest together with a German SMA patient who living