Dear SMA Community,
We hope you are enjoying your summer. We know many of you are anxious about the approval process for Spinraza in Canada and therefore would like to update you.
To more fully understand the timing of reviews by the Common Drug Review, you will find the following link helpful: https://www.cadth.ca/nusinersen. If you scroll down within this link, you will notice there are anticipated dates for specific milestones during the review. Biogen is the applicant and final recommendations are expected in late November. The draft report in September is not able to be shared with stakeholders. Note that these dates and milestones do not include Quebec as Quebec has its own process, and those timelines are not available as of yet.
Cure SMA Canada is working hard to expedite the process. We are communicating with decision makers, discussing terms of access, and preparing to engage with provincial/territorial drug programs. We are holding meetings with Biogen and CORD and arranging meetings with provincial government officials to ensure access to Spinraza through public drug programs. We are working to explain the need for access for the entire community. We know we hold a much stronger profile as a group and this is why we must reassure our SMA families that together we have a much greater impact and voice.
Thank you to all of you who have submitted your stories, participated in the survey and remain a strong community! This engagement is important to moving forward our goals.
CORD (Canadian Organization for Rare Diseases) has expressed appreciation to Cure SMA Canada for the advocacy and representation we are providing on behalf of our SMA community. They have stated that the SMA community has a real opportunity for success based on our sense of support and community spirit.
Our aim is to advocate for timely provincial funding for access to Spinraza for all who could benefit from it in Canada. We will keep working towards this goal.
Please continue to check in on our website for updates.
Thank you for your continued support!
Susi Vander Wyk
Cure SMA Canada