This is exactly what is happens in Denmark. Benjamin Meng with SMA2 is still waiting for access to Spinraza. At Folkemødet last year, he asked about access to Spinraza. They said we try everything!
Ok some months passed away. A young boy who wants to live loses more and more mobility. The country of Denmark really has no interest in helping its SMA patients . Some parents going the way and pay the therapy through donation, because their own country doesn’t help.
Benjamin’s mother has lost faith in politics, she don’t belief in physicians.
We can understand Benjamin’s parents. Physicans in Denmark are not allowed to work independently as an doctor in Germany or other countries. They must act as the patient’s lawyer and to the other hand, they must manage the interests of society in relation to limiting the cost of expensive hospital visits and drugs.
Nevertheless, don’t forget the Hippocratic Oath, that every physicans gives?! He has to work for the patient and not for the politics & society. They’ll be put through the system like a puppet and a physicans can change something, if he has the courage. We know even a case studies that showed that.
But still, we will continue to report over Benjamin. We didn’t forget the SMA patients in denmark, especially to children adults who have no access To Spinraza. All the world should know, that the sun doesn’t always shine in Scandinavia. There live children / adults there, who are simply not supported by their own state.
Not everyone is lucky enough to get access to Spinraza.
This is SMA and so looks if a small diagnostic groups hit a big system.
Reimbursed access – presymptomatic, Type I & II (subject to clinical criteria) With age limit to 6 years.
Reimbursed access for patients to 17 years old, aligned with PALKO positive recommendation
Reimbursed access -Types I, II and IIIa (0 to 18 years of age)
Reimbursed access – Pediatric (18 years old) Types I, II and IIIa