Man with spinal muscular atrophy pleads for $300-K drug

The Tories are accusing the province of abandoning a rural man who has lost coverage for a costly drug that gave him optimism about his degenerative disease “for the first time in (his) life.”

Jeremy Bray, who has spinal muscular atrophy, uses his thumb and a wheelchair to get around and work a remote IT job from Rivers.

His supply of the drug risdiplam is expected to run out at the end of the month.

The oral medication, estimated to cost $300,000 per year, is recommended for patients 25 and under in Canada, owing to limited research on its effectiveness for older adults.

Bray aged out of that demographic five years ago but he’s been taking the medication at no cost since May 1, thanks to “compassionate coverage” from a pharmaceutical company. He was informed last week he would no longer receive financial support for the treatment.

Progressive Conservative MLA Colleen Robbins raised the latest development in his case, as well as the drug’s early benefits, during question period.

“Why did (Health Minister Uzoma Asagwara) dangle hope for Jeremy just to rip it away again?” Robbins said Thursday.

Bray visited the legislature in January to visit with Asagwara and urge the province cover the drug.

Asagwara said their office has called on Canada’s Drug Agency to commission an expedited review of the drug for an older demographic. The minister said drug company Roche Canada began providing Bray with “compassionate coverage” in response to the province’s advocacy.

“I highly encourage Roche to continue to provide that compassionate coverage for Jeremy as he’s indicating he’s experiencing benefits,” the minister told the house.

In an email penned to MLAs, Bray said he’s experienced no disease progression or adverse side effects during the six months of treatment.

“In that short time I’ve even experienced some positive effects, including a stronger voice, a more expressive face, and most significantly, less fatigue,” he wrote.

He added he’s been able to work longer hours and maintain enough energy to participate in recreation and physiotherapy in the evenings.

Bray did not immediately respond to a request for comment made on Thursday afternoon.

The email said he and his family were “heartbroken” to not have stable access to the drug.

“This is a tragic situation and I am committed to fighting for Jeremy. My office spoke with him today and I am planning to meet with him again. I am disappointed to hear that Jeremy’s coverage is running out and I have advocated to Roche Pharmaceuticals to continue their coverage,” the health minister said in a statement released Thursday evening.

maggie.macintosh@freepress.mb.ca