‘People are dying:’ Regina man with muscle disease seeks action

A Regina man is hoping the Saskatchewan government will help cover an expensive drug he needs to potentially save his life.

Thirty-one-year-old Cole Pringle lives with Spinal Muscular Atrophy (SMA), a condition that progressively weakens his muscles and will eventually fail his lungs.

The drug Spinraza was approved by Health Canada in June 2017 to treat the condition, and now Pringle said it’s up to the provinces and territories to decide how to fund it. He added Saskatchewan has yet to decide over a year later.

In the meantime, he’s created a GoFundMe page to try to get a hold of the drug directly from a manufacturer, which costs a minimum of $60,000 per injection.

Effects get worse as time ticks

Pringle was born a healthy baby, being diagnosed with SMA at the age of 18 months.

Because his condition is less severe than others, Pringle said he’s lived a lot longer than he was expected to. Typically, he noted, babies with SMA don’t live more than two years.

Although he lives on his own, is a University of Regina graduate and has a full-time job, Pringle said he still needs people to help him as his condition worsens while time passes.

Over the course of just a couple years, Pringle said he’s gone from drinking a glass of water to having to use a straw because he can’t lift up the cup.

“Soon it will rob me of my ability to speak, swallow and finally breathe,” he said on his GoFundMe page.

Pringle estimated, if his condition is left untreated, he’ll be able to live his normal life for another two or three years. After that, he said he’ll likely have to live in the hospital on oxygen.

Taking matters in his own hands

Pringle reached out to the Ministry of Health about six months ago in hopes of getting financial help and received a response three months later, saying the province is working on the funding.

“For (the government) to come back and say ‘oh, we’re working on it,’ that’s great, but the reality is that people are dying,” he said. “It seems like they’re dangling this possibility in front of our faces.”

Pringle explained he often thinks of how different it would have been growing up with the freedom to drive or play football with his friends.

“You fantasize and you dream and you hope about all of these things that you’ll be able to do one day, and then you (could) finally get it. I never imagined that this would be the problem that we have—that money would enter into it, that we’re trying to figure out ‘what is the price of a life?'”

As time goes on without funding from the Ministry of Health, Pringle is trying to raise money through a GoFundMe page he created last Sunday.

In only a week, he’s raised about $15,000 with a goal of $120,000—the minimum cost for two injections of Spinraza.

“I really can’t thank the people enough,” he said, adding he’s confident he’ll raise most of his goal as he plans events through his work to fundraise.

Ideally, Pringle would need six injections in his first year on the drug and then three more injections per year for the rest of his life.

Pringle added he feels uncertain because there’s a chance the government’s decision will only benefit the medication’s cost for babies under six months old or those with a more severe type of SMA, for example.

“How can you just sit there and give access to nobody while we suffer?” he asked.

“I’m just appalled at the delays and the apparent lack of caring from the health minister.”

“Drug funding decisions in Saskatchewan are informed through a rigorous review process that involves the national Common Drug Review, the provincial Drug Advisory Committee of Saskatchewan, as well as negotiations via the pan-Canadian Pharmaceutical Alliance.  The pan-Canadian Pharmaceutical Alliance is currently in active negotiations for Spinraza,” said the Ministry of Health in an email statement.

 “The Saskatchewan Formulary currently lists more than 5,400 drug products that are benefits under the Drug Plan, a number of which can be used as supportive treatment for patients with Spinal Muscular Atrophy.”