Petition to Polish Prime Minister to refund first therapy for Spinal Muscular Atrophy (SMA)

Dear Prime Minister  

We ask you for the approval of first therapy for Spinal Muscular Atrophy (SMA) in Poland.  

People in Poland affected with SMA: infants, children and grown up do not have an access to innovative therapy for SMA called Spinraza. Spinraza is a breakthrough in today medicine and saves not only muscles efficiency but also, what is most important lives.  

SMA community in Poland do not have an access to Spinraza because it is still not refunded here.  

Since August 2017, SMA community waits for governmental approval to refund Spinraza. Despite Agencja Oceny Technologii Medycznych i Taryfikacji issued positive opinion about therapy, and time given by law has passed, Spinraza is still not refunded.  

In the meantime members of our families, our children and friends are dying.  

Only few countries in EU including Poland do not pay for this therapy.  

We are desperate and full of sorrow knowing that SMA can be stopped and we still have to watch members of our families or friends dying because of SMA.

Gosia Rybarczyk-Bończak #TakdlaTerapiinaSMAwPolsce    Contact the author of the petition