Bray hails CDA decision as ‘huge milestone’

A Westman resident left his impact on federal policy earlier this week when Canada’s Drug Agency expanded its coverage recommendation for two life-sustaining medications to include adults over 25.

Jeremy Bray, 31, lives in Rivers and works from home as a data consultant for the Louis Riel School Division.

He was born with spinal muscular atrophy (SMA), a rare neurodegenerative disease that causes muscles to progressively weaken.

Bray’s medication, called risdiplam and sold under the brand name Evrysdi, slows the progression of the incurable disease, and without coverage, Bray could have been on the hook for roughly $300,000 annually for the treatment.

“(It’s) a huge milestone for us, and something we’re very, I’m very happy about, and happy I could help do my part,” Bray said in an interview Friday.

After Canada’s Drug Agency (CDA) drafted a recommendation that supports the expansion of public coverage last week, people across Manitoba living with SMA — like Bray — can now apply for coverage for the treatment.

“It’s incredibly good news for us. We’ve been hoping they would make this decision for years now, and they have,” he said. “We’re very, very excited.”

In 2021, CDA wouldn’t recommend treatment for adults older than 25 because of “limited data” for people in that age group, the CDA said at the time. That left Bray limited for coverage options, which triggered the beginning of his advocacy.

“It’s been a very stressful few years, obviously,” he said. “Going into these meetings and hoping that this will be the time everyone changes their mind, and being told no over and over again, has been pretty discouraging over the years.”

While a CDA recommendation is non-binding, meaning the CDA does not dictate provincial coverage, and provincial governments have full autonomy over publicly funded drugs, the Manitoba government will fund the medication for adults who meet clinical requirements, the province said in a news release.

“The Manitoba government is currently reviewing requests from adults who were previously ineligible and assessing them against the new recommended criteria,” the release said.

Bray said after five years of temporary coverage periods, he’s looking forward to having consistent funding for the treatment, which is administered orally in a liquid drink or tablet.

“Once the CDA recommendation is finalized, which I think there are still some bureaucratic steps to go through, once that’s all finalized, there will be no case for removing me from treatment or not funding my treatment,” Bray said.

He added that he is grateful to have been able to share his story with Health Minister Uzoma Asagwara and the NDP government

“I will say, I was writing letters when the PCs were in power, and I didn’t get a meeting with them. So, I am very happy that they took the time to meet with me, even though we didn’t get the results we wanted right away,” Bray said.

Asagwara said in an interview on Thursday that this decision by the CDA is an outcome of the Manitoba government being a “listening government.”

“We were thrilled that Jeremy and his family were willing to share their story in a way that allowed for us to not only advocate for this review, but to give Jeremy’s experience as an example for Canada to take a closer look at and incorporate in their review and their approach,” Asagwara said.

“I think what it shows us is that it is important for us to explore all avenues of advocacy with Canada.”

Bray said he’s “just happy that all the uncertainty should be over now, and I can just go back to planning for the future and living life.”

» rgerrard@brandonsun.com