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 extreme need of the Canadian SMA patients to receive access to the ONLY treatment available for Spinal Muscular Atrophy. A proven lifesaving and life changing treatment. The timing of CDEC’s recommendation so close to Christmas, made it challenging to react immediately with impact. Now that the holidays are over, we are able to move forward with several initiatives to express the needs of our community with government.
We now need to build on the work that has taken place over the past year. Activities have included providing informational support to the application to CADTH, meeting with government representatives, coordinated a letter writing campaign, authored a letter to all provincial health ministers and issued a survey to fulfill additional information requests from government officials. Thank you to the many individuals and families that have taken an active role in participating in these initiatives. We are now working on upcoming meetings with provincial governments, the medical community as well as media outreach.
It will be important for members of the SMA community and its supporters to work together on a coordinated response. Cohesively we have much more impact.
- Media: Sharing our stories via the media is one of the most effective ways to reach government. Please reach out to Cure SMA Canada if you would like more information on how to do this.
- National Email Campaign: We are going to release information for an email campaign to provincial government representatives. The community will be issued a template within the next week for this email with instructions as to who to direct the email to within the individual provinces, including health minister and local representatives.
- Petition: We are in the process of drafting a petition for the lead province in the PCPA negotiations asking for timely and broad access. When the information about the lead province is made public, we will be launching this petition and requesting mass circulation across the country.
- Video Campaign: Please go to the Cure SMA Canada facebook page: Cure SMA Canada – Fighting for Treatment Upload a short video (ideally 30 seconds or less) appealing to provincial health ministers on the need for public access to Spinraza.These videos will be available publicly and will be compiled to help support and spread awareness in our campaign.It will also be included in our submission of the petition as well.Be creative!
Ideas for your video:
- “My name is ____________, my life has value,
- I know that I could be stronger with this treatment.
- I’d be less often in hospital
- This is my daughter _______________, Spinraza could save her life.
- Do I not have rights as a Canadian needing treatment? There is only one treatment available, we need access asap, every day makes a difference in my life.
- Other countries have approved broad access, why not Canada?
We can impact this decision with our stories, feelings and with our voices. Personal stories have impact, seeing our faces has impact and working together has the most impact.
Thank you to the many individuals in our community who continue to work cohesively to bring the change we need. CDEC and INESSS decisions are not the final step, we are still able to influence the decision for Canadians affected by SMA.
Another community statement will be issued within the coming days to update and engage you as the patient community and our many supporters.
Together we will be heard and bring change for our community!
Susi Vander Wyk
Cure SMA Canada