NDP, Tories spar as man with rare disease fights to secure coverage for $300-K drug

The Kinew government won’t commit to funding a costly drug for a 30-year-old with a rare degenerative disease, but it has appealed to a pharmaceutical company to keep donating it.

A Conservative MP told reporters public servants “must be choking on hypocrisy,” given Premier Wab Kinew’s flagship campaign pledge was to fix public health care and combat privatization.

“There’s no question that Manitoba Health should be covering this drug,” said Grant Jackson, who stepped down as the MLA for Spruce Woods this spring before running successfully in the Brandon-Souris riding.

Jackson spoke at a news conference at the Manitoba legislature on Friday to call attention to a coverage gap that was brought to his attention when he was a PC MLA.

The provincial Tories have sought answers for Jeremy Bray — an IT consultant from Rivers who has spinal muscular atrophy — in question period this week.

Bray was diagnosed with the progressive neuromuscular condition when he was a baby. He uses his left thumb to work and operate his power wheelchair.

There were no medications approved to treat his disease before his 26th birthday.

Health Canada approved risdiplam for patients aged two to 25 in April 2021.

Bray had long lost his ability to stand and move most of his other muscles by then, but he spent the better part of his 20s advocating to try the groundbreaking drug.

He unsuccessfully appealed to PC and NDP governments to pay for the drug that costs upwards of $300,000 per year.

All provinces except for Quebec claim they assess older patients on a case-by-case basis, but Manitoba has yet to approve Bray or any other older adults for it, according to Cure SMA Canada.

“The process has taken so long,” Bray said in an interview Friday — one week after learning his initial half-year supply of risdiplam would not be topped up.

“If we had known how long it would’ve taken, we would be living in Quebec right now or somewhere else. It just seems like we’re always so close,” he said.

A pharmaceutical company began providing him with the drug for free in May. He’s been taking it courtesy of Roche Canada’s compassionate coverage program, although he was unaware of this fact until recently.

Bray said over the six months he’s taken the drug he has experienced significant quality-of-life improvements he never thought possible, including having enough energy to work a full day.

Health Minister Uzoma Asagwara penned a letter to Roche Canada Thursday to request it continue to support Bray.

Asagwara wrote the company has “a unique opportunity” to support a Manitoban’s early success with the medication and generate evidence to inform future national drug agency approvals.

Earlier this year, the minister requested Canada reconsider approving risdiplam for older adults, but Ottawa’s stance has not changed.

Cure SMA Canada’s Susi Vander Wyk said Quebec is, by far, the best place to live for spinal muscular atrophy sufferers because it approves risdiplam for patients of all ages.

The executive director called Canada’s cutoff age “arbitrary” and “ridiculous,” owing to the rarity of the disease and the small sample sizes in research.

Vander Wyk noted she is a mother of a 29-year-old who has the same type of condition as Bray and is approved for risdiplam in Chilliwack, B.C.

“I liken (Manitoba’s approach) to playing Russian roulette with this young man’s life,” she said.

Asagwara told reporters Friday that the former PC governments ignored Bray’s pleas entirely.

The NDP successfully applied pressure on a federal agency to conduct a “very rare, second expedited review” of the medication and secured drugs for Bray, the minister said during a scrum after question period.

“We need for them to go further. We need for Roche to meet with the (Canada Drug Agency),” the minister said.

Asked about PC accusations about privatization, Asagwara said their colleagues do not understand the role partnerships play in Canada’s health-care system.

In the letter to Roche, Asagwara said Bray’s experience underscores the potential benefits for older patients. At the same time, Ottawa’s recommendations “bind provincial coverage decisions” and Manitoba’s ability to fund treatment is limited as a result.

Bray said he wants to be a case study given he’s experienced significantly higher energy levels on the drug.

“What I really want and I think is fairly reasonable is for the province to pick up the bill to get me to that one year mark of treatment,” he said.

Bray was planning to check in with a neurologist in the spring to hear an expert’s opinion following 12 months of treatment.

Asagwara is scheduled to meet with Bray and Vander Wyk in Winnipeg on Monday.

maggie.macintosh@freepress.mb.ca