Cure SMA Canada has been working feverishly in our fight for broad access to treatment. 

Dear Cure SMA Canada Community,    Cure SMA Canada has been working feverishly in our fight for broad access to treatment.   A short but important update in these meetings and activities:  The Pan Canadian Pharmaceutical Alliance (pCPA) has moved Spinraza to the list of drug products that are under active negotiation.  Now is the right time for…

Community update January 4, 2018

Dear Canadian SMA Community and its supporters, Before the Christmas holidays, our community received a shocking response from CDEC (Canadian Drug Expert Committee) of only recommending reimbursement of a small subset of type 1 patients.  We are very frustrated with the decision,  it is unacceptable for an organization such as CADTH to not recognize the…