Eltern aus dem Landkreis Osnabrück sind mit ihrem Eilantrag auf die Behandlung mit Zolgensma gegen die spinale Muskelatrophie Typ 1 beim Landessozialgericht Niedersachsen-Bremen gescheitert.
Children over 6 years with spinal muscular atrophy still have no access to Spinraza. Denmark has one of the strictest criteria. This means that only a few children under the age of 6 have access to Nusinersen (Spinraza). In general, Scandinavia has locked out its older patients (adults) from therapy.
Parents who have children over the age of six, must continue to watch how their children physically break down.
Although new studies show that older patients could also benefit from Spinraza, but the answer was no.
This time the Medicinrådet cannot refer to a high price – the price is so low, no other country has such attractive access to Spinraza. It appears that Medicinrådet does not want to spend money on this group of patients.
The reason for the fourth rejection.
The lack of documentation is the reason why the Medicinrådet has rejected a broader use of Spinraza for the treatment of people with spinal muscular atrophy.