Catherine Boivin, who lives with spinal muscular atrophy, wants all people living with the progressive muscle-weakening disease to have access to treatments and the best standard of care.The only gene therapy approved by Heath Canada to treat spinal muscular atrophy costs almost $3 million. GETTY
Spinal muscular atrophy is a genetic disorder with four primary types — Type 1, 2, 3 and 4 — with Type 1 being the most severe. SMA is a progressive disorder that causes muscles to weaken over time, and symptoms can range from weakness in the arms and legs to being unable to breath independently or swallow. The prevalence of SMA in Canada is estimated to be 1 in 10,000 live births.spoke with Catherine Boivin, who lives with SMA, to learn more about the disorder and her life as an advocate.
In 2017, Health Canada approved Spinraza, which is a medication that is injected with a needle into the lower back and administered every four months. Quebec was the first province to make the drug accessible to everyone with SMA, regardless of age. So in a way that was a big win, but it was also hard to then look at our peers across Canada and see that they didn’t have access to this treatment yet.
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