Free drug coverage ended, Manitoban battling degenerative disease asks province to step up

A man who has gradually lost his ability to move most of his muscles says the treatment he’s relying on to slow — and even reverse — his degenerative disease is being revoked.

Jeremy Bray, 30, said he only has a month of treatment left for his Type 2 spinal muscular atrophy because the drug company is ending free coverage.

That prompted him to once again urge the Manitoba government to cover the price of his life-sustaining drug while he still has some independence in his life. 

“I don’t want to be put on an expensive treatment that isn’t benefitting me,” Bray said. “I want to try this treatment that has already benefitted me and to be assessed along the way.”

The data consultant from Rivers, Man., has already lost the capacity to move his head, arms, hands and legs. Now, he's down to the use of just one thumb, his mouth and parts of his face, but those muscles have gradually weakened.

That changed in May after Manitoba’s health minister said the government persuaded Roche, the drug’s manufacturer, to extend free coverage to Bray on compassionate grounds.

Since then, Bray has experienced a remarkable turnaround.

He says his facial movements have become more expressive, his voice got stronger, and he can work longer days without needing rest.

“When I found out all of the stability and even improvement might be snatched away, I was devastated, afraid,” Bray said.

He’s always known that one day he would lose his physical functions, he said.

“And then, finally, when I went on this treatment, it seemed like, ‘Oh my goodness, my situation might not just get worse as time goes on. I might have hope.’”

He found out last week the treatment is being withdrawn, and he turned to the provincial government to reconsider its refusal to pay for the hugely expensive treatment, estimated at $300,000 in the first year. 

The NDP government has cited guidance from Canada's Drug Agency (CDA) that the drug — risdiplam, sold under the brand name Evrysdi — isn't recommended for adults over 25 because people from that age group haven't been involved in any clinical tests.

Earlier this year, the province asked the CDA, which is responsible for co-ordinating drug policy among provinces and territories, to conduct an "urgent review," citing the “real-world evidence” it has received of the drug’s benefits from a neurologist in Manitoba.