Tears gathered in Jeremy Bray’s eyes as he absorbed the news that his pleas for Manitoba’s government to cover his life-sustaining treatment hadn’t changed the health minister’s mind.
Bray, 30, who has a degenerative disease that gradually robs him of the ability to move his muscles, met with Health Minister Uzoma Asagwara on Monday after petitioning the NDP government to pay for the drug while he still has some independence.
He can currently move his mouth, parts of his face, one thumb — and that’s about it.
“All I would like is for the province that I’ve lived in my entire life — the province that I love — to help me and provide treatment if it benefits me, which I already know that it does,” Bray told reporters after the meeting.
Bray, who has Type 2 spinal muscular atrophy, has been on the drug risdiplam — sold under the brand name Evrysdil — for more than six months, after Asagwara persuaded Roche, the drug’s manufacturer, to extend free coverage on compassionate grounds.
The province hoped Bray’s experience with the drug would convince Canada’s Drug Agency (CDA) to recommend the treatment for adults over the age of 25. The agency has argued there isn’t enough evidence because people in that age bracket haven’t participated in clinical tests.
After six months, Bray has reported having a stronger voice, his facial movements becoming expressive, and longer days at work as a data consultant before needing rest.
However, Bray found out last week that Roche would stop offering the treatment for free, so he turned to the NDP government to reverse its refusal.
He told CBC News before the meeting he was “hopeful” the province would change its mind, but it didn’t happen.
“I just want a chance,” he said, as his father wiped away a tear.
He wanted to be on the treatment for a full year, which is when he would be assessed to determine if he should remain on the drug.
“I have no doubt that it will show that I am benefitting from treatment,” he said.
Asagwara has argued that Manitoba won’t overrule the federal drug agency, which is responsible for co-ordinating drug policy among provinces and territories. In response to Bray’s pleas, the province asked the agency for an “urgent review” of the drug, but it stated there isn’t enough evidence to reverse its decision.
However, Quebec has no age restrictions for access, while patient advocacy group SMA Canada says provinces like Alberta and Ontario have paid for treatment for adults over 25 in some cases.
His father, Darren Bray, believes Manitoba’s reluctance has to do with money. The hugely expensive treatment is estimated to cost $300,000 in the first year.
“They’re hiding behind the very loose recommendation from the CDA,” he told reporters.
“They could easily approve Jeremy today, as many other provinces have, and they’re just not willing to do it. It’s absolutely ridiculous.”
An emotional Obby Khan, leader of the Progressive Conservatives, slammed the government’s decision as “callous” and “heartless” at a news conference alongside the Bray family.
“I can’t understand why the minister of health and the premier would invite the family down [to the legislature] with hopes and belief that this may be the sign, the hope that they were looking for, and tell them that they’re not … going to approve this medication is heart-wrenching.”
Khan said he told the family beforehand he was confident the NDP “would make the right decision.”
“I guess I’ve lost that bet now.”
Any hopes for a new clinical study to persuade Canada’s Drug Agency is impossible “because there’s so much evidence right now that it’s working,” Dr. Xavier Rodrigue, a Quebec doctor who treats patients with spinal muscular atrophy, previously said in an interview.
He argued it would be unethical to conduct a study in which some patients receive treatment and others don’t, as the people not given the drug would be banished to a worse health outcome.
Asagwara repeated Monday they want Roque and the federal drug agency to work together and treat Bray’s experience a “real-world clinical study” in the hopes the agency revises its recommendations.
“We’re going to continue to advocate for Jeremy’s family,” the minister said.
Jeremy Bray says they will now regroup and explore options to fund his treatment going forward.
“We’re not going to give up on him,” Darren Bray added. “Perhaps the province has, but we’re not going to.”
Manitoba won’t budge on covering drug for 30-year-old with degenerative disease
