Regina man with rare muscle disease pleads for help getting expensive treatment
Cole Pringle can't afford huge price tags for Spinraza injections
Cole Pringle is beating the odds.
The 31-year-old Regina man is living with Spinal Muscular Atrophy (SMA), a rare motor neuron disease that, in its most severe form, will give babies less than 18 months to live.
Pringle says he's lucky, though. He was born healthy and wasn't diagnosed with SMA until he was 18 months old.
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Now, with Pringle just shy of his 32nd birthday, SMA has taken away much of his quality of life.
"I can no longer lift a glass to my mouth to drink anymore. Things like that are now impossible for me," Pringle said.
Eventually, the disease will cause Pringle's lungs to stop working.
But he is banking on one solution that could bring back muscle function and save his life.
The only treatment option
Spinraza is a drug that has been approved by Health Canada to treat SMA.
Pringle wants access to the treatment, however he can't afford it. He said one injection of the drug costs a minimum of $60,000. He would need six of those injections in his first year of treatment and three injections every year after.
"After the first injection, the progression [of SMA] stops and after the second you start to get ability back. So, the nerves and muscles that I was no longer able to control, those connections would be rebuilt and I would slowly gain back strength and energy and the ability to do more things in my life."
Pringle can't afford the hundreds of thousands of dollars he would need for the treatments and he said he's getting impatient.
Despite the drug being approved in Canada, it's not covered by drug plans in Saskatchewan or any other province.
It's really hard not to feel like you're alone in the situation.- Cole Pringle
In a statement to CBC, the province said the government is currently in talks with the pan-Canadian Pharmaceutical Alliance who are negotiating with Spinraza.
Pringle said he's been getting that response for the last year and he's worried that time might be running out for him.
"It's been over a year and as far as I know we're no closer than we were a year ago to any decision. People don't really seem to want to share a timeline of any kind."
According to the province, there are more than 5,400 drugs on its formulary, a number of which can be used as supportive treatment for people with SMA.
Provincially-funded careworkers are part of the support network that helps Pringle live day-to-day.
But CureSMA, an organization that advocates and raises money for people with SMA, has stated that Spinraza is the only option for treatment of the disease.
Hoping for donations
Pringle has started a GoFundMe page to help him get close to being able to afford the injections. Within four days of its launch, $9,000 had already rolled in.
He's hoping the page brings about more than just money.
"This isn't a condition that a lot of people know about. So of course I would love donations," he said. "But really I would love it if the people who saw me would contact the government and let them know that this is not OK."
Pringle said the donations have helped him out emotionally, as well.
"Dealing with the government and dealing with these pharmaceutical companies, it's really hard not to feel like you're alone in the situation and the Gofundme page proved that I do have support and I do have people out there who have my back and it was really refreshing to see that."
- A previous version of this story stated that there are more than 5,400 drugs that are covered to help treat people with SMA. In fact, the total number of drugs on the province's formulary is over 5,400 and a number of which can be used as a supportive treatment for patients with SMA.Jul 26, 2018 9:46 AM CT