Dear Canadian Government,
The Spinal Muscular Atrophy (SMA) patient community has been fighting a very serious battle to access Spinraza, the only treatment that has ever been developed for this life limiting and progressive disease. We have been in a life or death battle for the past 2 years. Over 40 other countries have already approved this life changing treatment, why is Canada still allowing it’s patients to progress??
Due to the upcoming decision brought on by the recent appeal by Biogen, Canada’s SMA community are extremely concerned that the former decision did not encompass all of our patients for reimbursement for this life changing treatment.
We are very concerned that you may not have all the facts and therefore would like to provide those to you.
Recently, patients from across Canada participated in focus groups to share their concerns.
Please take a moment to hear what they have to say. We will be sending you a short video every day with one question and responses by Canadians affected by SMA. This has been a very exhausting effort in terms of emotions and expression of the most fearful, innermost feelings. We ask that you take the very short time out of your day to expand your understanding of the implications of your decision that affects their lives.
Susi Vander Wyk
Cure SMA Canada