Rivers man appeals for drug coverage

A Rivers man born with a rare motor neuron disease causing his muscles to slowly weaken worries his family won’t be able to pay for his costly treatments after his coverage ends this month — and he’s urging Manitoba’s government to step in.

Jeremy Bray, who was diagnosed with spinal muscular atrophy, has been taking a drug called risdiplam for more than six months. It helps him maintain the function of his left thumb, face and voice.

Bray, 30, uses his thumb to drive his wheelchair and work as a data consultant for the Louis Riel School Division on his computer and phone.

Last week, he received a call from a patient support program to inform him that funding he gets from the pharmaceutical company Roche has been terminated and that he would no longer be able to access treatment.

“It’s been pretty devastating for us to once more be back in this position,” he told the Sun on Friday, adding that his family is considering whether they will need to put their house in Rivers up for sale to finance the estimated $300,000 yearly cost of treatments.

Canada’s Drug Agency, which is responsible for co-ordinating drug policy among the provinces and territories, doesn’t recommend treatment in Bray’s age demographic because there is limited data on patients older than 25, but Bray has been able to access the medication since May at no cost thanks to “compassionate coverage” from the pharmaceutical company, he said.

Bray said he had been trying to get access to risdiplam since 2021.

Before spring, Bray continued struggling to get coverage and sent letters to the province asking for help, but Manitoba Health was unwilling to diverge from the CDA recommendations.

“They requested a review of their recommendation,” he said

The review came back in the summer, but it “didn’t really change anything.”

Bray said it was never communicated to him about who was funding his treatment until Thursday when the province reached out to reaffirm its position.

Health Minister Uzoma Asagwara told reporters during a scrum on Friday the province is pushing the pharmaceutical company and the federal agency to complete clinical studies with patients over 25, so new recommendations can be made.

The province urged Canada’s Drug Agency to expedite a second review of the medication Bray needs, but the agency’s position remains unchanged, Asagwara said.

“We’re going to keep fighting for Jeremy, we’re going to keep fighting for his family, and we’re going to keep working very hard so that Roche and the CDA work together to make some better recommendations,” Asagwara said.

The minister did not confirm whether the province would step in to fund Bray’s coverage if it can’t be extended by Roche.

Quebec has no age restrictions to access treatment and other jurisdictions, like Alberta and Saskatchewan, provide funding on a case-by-case basis, Bray said.

Asagwara said Manitoba Health has not been directly told that other provinces are covering this medication.

Spruce Woods Progressive Conservative MLA Colleen Robbins called on the minister Friday at the Manitoba legislature “to do the right thing” and fully fund Bray’s medication before it runs out.

Grant Jackson, MP for Brandon-Souris, said he’s concerned people like Bray will be forced to leave Manitoba to ensure their health care needs are being met.

Right now, there is no cure for spinal muscular atrophy, but treatments can slow its progression.

“What I’ve heard from other adults on risdiplam is that many people see the most improvement or the most benefits after about a year. So, I’ve been really looking forward to the future for once, but that’s been kind of put into question all of a sudden,” Bray said.

He said the medication makes him feel less fatigued, allowing him to work longer days.

“I’ve also been told from family members I don’t see regularly that my voice is more clear than it used to be, and my face was more expressive than it used to be,” Bray said.

People can take the drug for as long as it benefits them, and Bray said he wants to be given the chance to scientifically prove the medication works on older adults. He will meet with the health minister again on Monday.

Roche communications manager Amy Haddlesey said in a statement the company cannot continue to provide the medicine “as it is not a viable or sustainable solution for patient access to medicines or for the health-care system. Such a practice also creates a disparity, in that it does not address the systemic funding barrier for other patients who are not able to access the medicines they need.”

Haddlesey also said Canada’s Drug Agency provides non-binding recommendations to provincial drug plans, meaning that it is up to “provincial drug plans to make their own funding decisions, including making exceptions.”

» tadamski@brandonsun.com