According to a story from cbc.ca, Cole Pringle is a 31-year-old man from Regina, Saskatchewan with spinal muscular atrophy, a debilitating illness that severely affects his mobility. He was diagnosed with the disorder when he was 18 months old, and over time, the illness has continued to rob him of most of his functionality. Now, he has been stuck waiting to see if his province will help cover the one treatment that could change his life.
About Spinal Muscular Atrophy
Spinal muscular atrophy is a rare neuromuscular atrophy in which motor neurons are lost, which causes progressive muscle atrophy. This disorder is linked to a heritable mutation in the SMN gene. The severity of the disease can vary widely, but in its most severe form, patients do not survive for very long. Cole lives with an intermediate form of the disease. Symptoms of spinal muscular atrophy include low reflexes, poor strength of breathing muscles, general muscle weakness and poor muscle tone, tongue twitching, poor feeding, and a bell shaped torso. Much of treatment is supportive, as patients will eventually need assistance with eating, breathing, and mobility. Mental function is not affected. The only drug that can address the underlying disease is called Spinraza. To learn more about spinal muscular atrophy, click here.
Getting Access to Spinraza
Health Canada has recently approved Spinraza, but Cole is not sure if the Saskatchewan health system will cover it for him. One dose is at least $60,000, which is well out of his price range, especially considering that he would need to get the injection six times in his first year of treatment. The drug is a game changer, as it ultimately reverses much of the lost function that spinal muscular atrophy causes, but none of the provinces in Canada have announced that they will cover Spinraza. Cole cannot wait but so long, and he needs help now.
Stuck in Limbo
Currently, the province appears to be stuck in negotiations with the drug company, but that has been happening for over a year with no real sign of progress. In a bid to start treatment earlier, Cole has opened a GoFundMe page. At this rate, it is possible that he will be able to raise the money faster than the drug will get covered.
If you would like to help save Cole’s life, you can find his GoFundMe here.
