Man with degenerative disease pleads for Manitoba to cover treatment while it asks drug agency to review
Province asks Canada's Drug Agency to reconsider if drug for adults with spinal muscular atrophy is suitable
A man with a muscle-wasting disease is pleased Manitoba is asking a federal agency to reconsider its opposition to a treatment for adults over 25, but he argues that time is running out in his case.
Jeremy Bray, who has Type 2 spinal muscular atrophy — a rare degenerative disease that has gradually robbed him of the ability to move his muscles — says he cannot wait for Canada's Drug Agency (CDA) to potentially revise its recommendation.
"I hope that the province commits to an emergency measure that provides me with treatment as soon as possible, because we really don't know how long the CDA process should take," Bray said Tuesday afternoon, after meeting with Health Minister Uzoma Asagwara at the Manitoba Legislature.
The 29-year-old data consultant from Rivers, Man., has lost the capacity to move his head, arms, hands or legs. Now, he's down to the use of just one thumb and his mouth, but those muscles are slowly getting weaker.
There is no cure for spinal muscular atrophy, but treatments can stop its progression and often lead to some improvement.
Province seeks 'urgent review'
However, Manitoba has refused to pay for the hugely expensive treatment, with a price tag estimated at $300,000 in the first year. The province cites guidance from Canada's Drug Agency 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.
On Tuesday, Asagwara told Bray in a meeting they've asked the agency — which is responsible for co-ordinating drug policy among provinces and territories — to conduct an "urgent review" and reconsider its recommendation opposing treatment for adults of a certain age.
In its letter, dated Monday, the province states it has received a summary of "real-world evidence" from a neurologist in Manitoba around treatments, primarily risdiplam, for adults aged 25 and over.
"As such, we are formally requesting an urgent review of new data … for the use of these medications in adult patients," the letter reads.
The drug agency didn't immediately respond to a request for comment Tuesday, but Asagwara said in an interview the organization has already responded to the province's letter, saying "they understand that this is actually a really important step" and would have more to say later.
Asagwara, however, said the province isn't willing to overrule the agency in the meantime.
"In Manitoba, we have a longstanding practice of making sure that we follow those guidelines and recommendations because they come directly from experts," the minister said.
"What we've done now is taken that additional step to say, 'Can they look at real-world evidence? Can they look at cases in the real-world context and see if there's new recommendations that should be issued?'"
Manitoba pays for risdiplam for patients under the age of 25.
Quebec has no age restrictions. A doctor previously told CBC News around 90 per cent of his adult patients with spinal muscular atrophy in the province have benefited from risdiplam.
All other provinces follow guidance from Canada's Drug Agency, but some jurisdictions, including Saskatchewan, Alberta and Ontario, have opted to pay for treatment for adults in some cases, according to the patient advocacy group SMA Canada.
Bray said he hopes the drug agency changes its mind around risdiplam, and that any review is conducted quickly.
The meeting was held Tuesday after Asagwara told CBC News in December they were "more than willing" to meet with Bray. At the time, Bray said he wanted a meeting with the minister to explain how the drug would change his life, after his previous requests were denied by both the current NDP and former Progressive Conservative governments.
Jeremy's mother, Tara Bray, said it's been difficult watching other provinces make exceptions.
"It's painful watching him go from being able to do things to be down to the strength of his thumb … but we're hopeful we see people getting [the treatment], so we're hopeful that someday he will have it, too."
That optimism, however, is tempered by the reality that Jeremy's running out of time to live a life of some independence.
"It wouldn't be an exaggeration to say that within six months he may not have the ability to drive his wheelchair," said Darren Bray, Jeremy's dad.
"Or talk," his mother said.
"Or work," Jeremy added.
PC MLA Grant Jackson, who represents Bray's hometown, said the province shouldn't wait for another bureaucracy to do the right thing.
"I've never seen any evidence from a federal government agency that they do anything quickly," Jackson said.
"While I appreciate the large-scale review of this policy overall, I think in Jeremy's individual case — which is my main priority as my constituent in Spruce Woods — the Manitoba health department needs to take bold action and provide this treatment to Jeremy Bray as soon as possible."
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