Manitoba man fights for vital medication, as province, federal opposition clash over funding

A Federal Conservative MP is calling on the province to fund vital medication for a Manitoba man whose coverage under the compassionate care program is set to expire by the end of the month.

Jeremy Bray, 30, said he may be losing access to the drug that’s helped him to treat Type 2 spinal muscular atrophy, a rare condition that progressively weakens his muscles.

Bray said the drug Risdiplam, provided through a compassionate program, has helped stabilise his condition, but free access is set to end this month.

“We finally thought we got somewhere and it’s kind of being snatched away; it’s been very tough,” said Bray.

“I am very at risk of losing my ability to work, drive my wheelchair, and function in society.”

The province says they are doing everything in its power to support him, while the official opposition argues that Manitoba should simply fund the treatment.

The PCs say the province should intervene immediately and fund the treatment, saying that some other provinces have made exceptions for adults over 25. They argue Manitoba shouldn’t rely on a temporary compassionate program, saying public coverage is needed to avoid leaving families in limbo.

“If they believe they can still fulfill their commitment to not privatize healthcare, and then treat a constituent of this province this way and force them to pay out of pocket, or move, or a private company should sponsor this for free, there’s no question Manitoba health care should cover this drug,” said Grant Jackson, federal Conservative MP for Brandon-Souris.

The province follows guidance from Canada’s Drug Agency, which does not recommend funding for adults because of limited clinical trial data. They say they have pushed for federal review, urged Roche to extend compassionate access, and advocated for real-world evidence to be considered.

“We’re hopeful Roche will continue to provide that compassionate coverage, and they see the benefits of working with the CDA to find a path forward here and likely other folks as well,” said Uzoma Asagwara, Manitoba Minister of Health.

While Bray and his family are hopeful, they are preparing for every scenario, including the possibility of leaving Manitoba to keep access to his medication. Bray says he isn’t asking for a blank cheque; he just wants Manitoba to follow the same model used elsewhere, where patients are tested annually to confirm whether the drug is actually working.

“I would be due to be assessed in May, I would love to make that milestone and to be assessed, and then the province has actual data that shows this is working for me,” said Bray.

The province says it will keep pressing the manufacturer and federal drug agency officials for a long-term solution and will meet with Bray and his family on Monday.