The approval of SPINRAZA by the European Commission is very good news for our community. Patients and families affected by SMA in Europe may now have a far brighter future than before SPINRAZA was available.
However, we are aware this is the first step in SMA treatment development. We are grateful for the perseverance of the European SMA community as we waited for this day and for the rigorous clinical work that resulted in a broad label that may offer access to many patients in Europe. However, we mustn’t forget that Spinraza will not be available for all patients in all countries immediately after EC approval as the reimbursement process is different from country to country. We fully understand the frustration this causes parents and patients. SMA Europe member organisations continue to work hard to try and resolve these inequities as quickly as possible.
Biogen has released a Community Update for your benefit.
If you have any questions regarding the reimbursement process in your country, please contact your national SMA organisation as listed below:
France: Association Francaise contre les Myopathies (AFM)
Germany: Deutsche Gesellschaft für Muskelkranke (DGM)
Iceland: FSMA á Íslandi
Italy: Famiglie SMA
Poland: Fundacja SMA
Sweden: Nätverket för spinal muskelatrofi (NSMA)
Switzerland: SMA Schweiz
The Netherlands: Vereniging Spierziekten Nederland (VSN) or Prinses Beatrix Spierfonds
UK: SMA Support UK & The SMA Trust
Ukraine: Children with SMA (CSMA)