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…
Drug researcher disputes rare disease medication pricing.
If it were not for bad news, the spinal muscular atrophy (SMA) community in Canada would have no news at all. At least in the past couple of months. First, the Good News Last summer, the situation was so promising—that was when the drug Spinraza (nusinersen) was approved by Health Canada for all 5q-SMA patients…
Cure SMA Canada urges timely, committed negotiations to provide coverage of first-ever and life-saving treatment for debilitating childhood disease. Cure SMA Canada, on behalf of Canadians diagnosed with Spinal Muscular Atrophy (SMA), our patient community and its supporters, is urging the provinces to come together and find a way to make Spinraza, the first-ever and…
Cure SMA Canada urges timely, committed negotiations to provide coverage of first-ever and life-saving treatment for debilitating childhood disease Cure SMA Canada, on behalf of Canadians diagnosed with Spinal Muscular Atrophy (SMA), our patient community and its supporters, is urging the provinces to come together and find a way to make Spinraza, the…
The Cure SMA drug pipeline is one of the primary ways we evaluate the success of our research program. The pipeline identifies the major drug programs in development, and tracks their progress from basic research through clinical trials Key Measurements The pipeline measures the progress of our research in two key ways. First, by tracking…
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…
Biogen Community Update – December 22, 2017 Dear members of the SMA community, In response to your request for information, we would like to provide you with an update on the health technology assessment reviews for SPINRAZA™ (nusinersen) conducted by the Common Drug Review (CDR) and L’Institut national d’excellence en santé et en services sociaux…
Dear SMA Community, We have had a response today from INESS which is the Insitut national d’excellence en sant’ et en services sociaux. They have stated that they are NOT recommending the listing of Spinraza for any type of SMA in Quebec. We at Cure SMA Canada are completely devastated to hear these results. We…