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 categorically will not accept this response, and are also very concerned about the recommendation that will be forthcoming shortly from CADTH, Common Drug Review. We know other rare diseases have had favorable responses and feel very strongly that there truly was only one response that was acceptable, to list for all types of SMA, particularly when there are no other options for treatment for this progressive, life limiting disease.
We have asked our SMA community to be patient and follow the process; we thank you for staying strong as a group. We now ask that as a group, we fight. We now go public, we now respond to media, we now “throw down our gloves”. If your family is approached by the media/press, feel free to share your stories, also please direct them to Cure SMA Canada so we can make public statements from the community’s perspective.
We will be sending out community statements to inform you of opportunities that we are pursuing to be heard and seen as a group. Shortly after the New Year, we will be gathering in response to INESS’s recommendation. We are organizing the details and will be sharing the invitation to join us in a public demand for action in Quebec. Together we WILL be heard.
We have created a Facebook page, Cure SMA Canada – Demanding Access To Spinraza, please share your stories, share your feelings. (link below) Lets keep all of our communication in one place for public access. It will have greater impact. Help spread awareness.
Here is a link to Biogen’s response to INESS’s decision. https://curesma.ca/2017/12/17/biogen-responds-to-recommendation-by-the-institut-national-dexcellence-en-sante-et-en-services-sociaux-inesss-for-spinraza/
Thank you for supporting each other and Cure SMA Canada as we fight for access to treatment.
Susi Vander Wyk
Cure SMA Canada