Minister lobbied to cover $300K annual cost of drug By: Carol Sanders Posted: 6:55 PM CST Tuesday, Jan. 21, 2025

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This article was published 21/01/2025 (263 days ago), so information in it may no longer be current.

Jeremy Bray who relies on his thumb for his IT job and to get around in his wheelchair is pushing the provincial government to pay for his expensive drugs before his condition deteriorates and he can no longer work.

“I love my job. It’s really just my sense of purpose in life and the thought of losing that would be devastating,” said the 29-year-old from Rivers, who has spinal muscular atrophy.

“Every day, I wake up, I move my thumb around in a circle to see if I can still move it. You can’t imagine the stress that that entails,” Bray said.

He met Tuesday with Health Minister Uzoma Asagwara to urgently request the province provide coverage of risdiplam — a drug that Canada’s Drug Agency hasn’t recommended for people older than 25 because of a lack of clinical trial evidence. Proponents point to “real world evidence” the drug — which costs an estimated $300,000 per year — can prevent the disease from progressing in adults.

“We need a response now,” said Bray who works full-time as a data analyst and computer programmer for the Louis Riel School Division. “I’m at risk of losing my ability to work, my ability to drive my wheelchair. My only source of independence comes from those two things,” he said.

“I’d have to rely on government assistance for my livelihood,” said Bray, who lives with his parents Tara and Darren Bray. They accompanied him to the legislature to meet Asagwara.

The minister was “very receptive to our concerns, our fears around the progression of the illness,” Bray said after the meeting.

Asagwara told reporters the province is taking action after Bray tried unsuccessfully to get coverage for risdiplam when the Tories were in power.

“I’ve asked for the CDA to urgently review the medications, and their decision around other treatments that are available right now but unfortunately, Jeremy is not eligible for,” said Asagwara.

Manitoba wrote to Canada’s Drug Agency Monday asking it to expedite a review of new data for the use of the medication for adult patients with spinal muscular atrophy.

The agency is responsible for co-ordinating drug policy in provinces and territories, and to provide evidence-based advice so they can make informed choices about drug, health technology, and health system policies as well as cost effectiveness.

“In Manitoba, we have a long-standing practice of making sure that we follow those guidelines and recommendations because they come directly from experts,” said Asagwara.

“We formally asked them to undertake an urgent review and to factor in real-world evidence,” the minister said. “It’s a step that could have been taken years ago under the previous government but for some reason never was.”

Tory MLA Grant Jackson said other provinces have covered risdiplam, even though the federal agency doesn’t recommend it for all adults.

“The Manitoba Health department needs to take bold action and provide risdiplam to Jeremy Bray as soon as possible,” said the MLA, whose constituency includes Rivers. “By that, I mean as early as this week,” said Jackson.

Susi VanderWyk, executive director of the advocacy group SMA Canada who was at the Manitoba legislature with the Brays, said the province should cover the cost.

“Quebec is fully accessing treatments, for patients of all ages,” said the woman from Chilliwack, B.C. VanderWyk said her daughter, who is the same age and has the same condition as Bray, has been helped by the treatment.

“We have a disease that affects people the same, whether they’re young or old or stronger or weaker — it affects the body the same,” she said. “So if you have an inclusion criteria that’s (for those) up to 25 years old, and not allow a 29 year old to access treatment, that is unethical, that’s unfair and the consequences are severe for somebody like Jeremy,” she said.

His parents said they are worried.

“It’s painful watching him go from being able to do things, to be down to the strength of his thumb running his life,” Tara Bray, his mother, said.

“It wouldn’t be an exaggeration to say that within six months he may not have the ability to drive the wheelchair or work,” said his father, Darren. “That’s why we need something to happen now, not waiting for another federal review to just drag it out.”

Jeremy Bray said without the treatment, the progression of his disease will add stress to the health care system.

“My respiratory system will fail. I will be hospitalized regularly. I’ll take up a hospital bed, and doctors’ and nurses’ time. The cost to the province would be considerable.”

carol.sanders@freepress.mb.ca