Remove the age restriction on life-saving drug

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My cousin’s son Jared was diagnosed with Type 3 spinal muscular atrophy (SMA) when he was 13 years old. Now 31, he’s lived more than half of his life with a debilitating disease that has slowly ravaged his body. 

As a child, Jared played every sport he could before being diagnosed with SMA. As the disease progressed, his ability to play the sports he loved quickly diminished.

By the time he was in grade 8, it was difficult for him to even climb the stairs at school.

But there could now be hope for Jared. Spinraza, a new “miracle drug” proven to dramatically help the effects of SMA, is changing lives. But Spinraza is one of the most expensive drugs on the planet, with a price of around $708,000 for the first year of treatment and $345,000 annually after that. Jared — and so many others like him — simply can’t afford it. 

Ontario Health Minister Christine Elliott recently announced that the province would fund access to Spinraza for patients with all levels of severity from Type 1 to Type 3  — but only for children up to 18 years old. 

This is great news for children with SMA. But the age cap is age discrimination at its worst. Jared and his family have waited 17 years for Spinraza to become available, and now Jared is being denied simply because he is over 18. 

Jared and people like him shouldn’t be forgotten. Please join me in urging Ontario to remove the age restriction on Spinraza funding to give everyone with SMA a fighting chance at life.