These photos were recently sent to Cure SMA Canada from James Radke, President at Zeal Access Inc. with the caption, “A picture is worth 1000 words”. Susi Vander Wyk speaks to a panel of various levels of government officials. In a room filled with representives of various government bodies, drug companies, health industry, and reps from various non profit organizations. She is flanked by Tori Lacey and Shailynn Taylor. Who are both adults living with SMA. Susi has just confronted a representative of CADTH, requesting an explanation on how Health Canada is able to approve Spinraza for all types of SMA. And how CADTH, as the next level of the approval process, is able to overturn that decision and leave a community with no other treatment options, devastated in their wake. Susi asks them to look at the 2 beautiful women beside her and explain to them why their lives are not worth the value of treatment and achieve the best health that is possible. Shailynn then expressed her frustration of being told that she is asked to plan for a funeral in the future rather than planning for her life. You can see the frustration on the faces of the SMA community around them. You can see the anger. “We are not buying what you are selling and we are going to make you understand who we are and why we have the right to treatment!”
