Family upset as Manitoba says it won’t pay for treatment for 30-year-old man suffering from degenerative disease

Jeremy Bray had tears in his eyes as he heard the news that his appeal to the Manitoba government to cover his life-sustaining treatment hasn’t changed the health minister’s mind.

Bray, 30, who has a degenerative disease that gradually takes away the ability to move his muscles, met with Health Minister Uzoma Asagwara on Monday after petitioning the NDP government to pay for the medication while he still has some independence.

He can currently move his mouth, parts of his face, a thumb – and that’s about it.

,“I would just like the province where I’ve lived my whole life — the province that I love — to help me and provide treatment if it benefits me, which I already know benefits me,” Bray told reporters after the meeting.

Bray, who has type 2 spinal muscular atrophy, is taking the drug risdiplam , Sold under the brand name Evrysdi , It took more than six months as Asagawara persuaded Roche, the drug’s manufacturer, to extend free coverage on compassionate grounds.

Bray responded to treatment

The province hoped that Bray’s experience with the drug would persuade the Canadian Drug Agency (CDA) to recommend the treatment for adults over the age of 25. The agency has argued that there is not enough evidence because people in that age group have not participated in clinical trials.

After six months, Bray reports that her voice has become stronger, her facial movements have become more expressive, and she can stay longer at work as a data consultant before requiring rest.

However, Bray learned last week that Roche would stop offering treatment for free, so he contacted the NDP government to overturn its refusal.

He told CBC News before the meeting that he was “hoping” the province would change its mind, but it did not.

“I just want a chance,” she said, as her father wiped away tears.

He wanted to undergo treatment for a full year, after which he would be evaluated to determine whether he should remain on the medication.

“I have no doubt that this will show that I am benefiting from the treatment,” he said.

Asagwara has argued that Manitoba would not dismiss the federal drug agency, which is responsible for coordinating drug policy between provinces and territories. In response to Bray’s pleas, the province asked the agency for an “urgent review” of the drug, but said there was not enough evidence to overturn its decision.

However, Quebec has no age restrictions for entry, while patient advocacy group SMA Canada says provinces such as Alberta and Ontario have, in some cases, paid for treatment for adults over 25.

His father, Darren Bray, believes Manitoba’s reluctance has to do with money. This extremely expensive treatment is estimated to cost $300,000 in the first year.

“They are hiding behind the very loose recommendation of the CDA,” he told reporters.

“They could easily sanction Jeremy today, as many other provinces have done, and they are unwilling to do that. This is absolutely ridiculous.”

An emotional Obi Khan, leader of the Progressive Conservatives, described the government’s decision as “senseless” and “heartless” at a press conference with the Bray family.

“I can’t understand why the health minister and the prime minister would invite the family (to the legislature) with the hope and belief that this might be the sign, the hope, that they were looking for, and tell them that they are not…to approve this drug is heartbreaking.”

Khan said he had already told the family that he was confident the NDP would “make the right decision.”

“I guess I’ve lost that bet now.”

Dad says, ‘We’re not going to leave him.’

Any hope of a new clinical study convincing the Canadian Drug Agency is unlikely “Because there’s a lot of evidence right now that it’s working,” Dr. Xavier Rodrigue, a Quebec doctor who treats spinal muscular atrophy patients, said in an earlier interview.

He argued that it would be unethical to conduct a study in which some patients receive treatment and others do not, because those who will not receive the drug may have worse health.

Asagawa reiterated Monday that he wants Roche and the federal drug agency to work together and consider Bray’s experience a “real-world clinical study,” in hopes the agency will revise its recommendations.

“We will continue to advocate for Jeremy’s family,” the minister said.

Jeremy Bray says they will now regroup and explore further options to raise funds for his treatment.

“We’re not going to give up on him,” Darren Bray said. “Maybe the province has done that, but we’re not going to.”