Province promises coverage for man with rare disease

Manitoba has changed course and has pledged to ensure a man with a rare degenerative disease won’t have to pay $300,000 to access life-changing treatment.

Jeremy Bray, who has spinal muscular atrophy, has been taking new medication via Roche Canada’s “compassionate coverage” over the last six months or so.

The 30-year-old said he was finally feeling optimistic about his condition — he relies on his thumb to operate his wheelchair — when he learned his ridisplam would not be renewed.

Health Canada has yet to approve the groundbreaking drug for spinal muscular atrophy, which costs roughly $300,000 per year, for patients 26 and older.

Prior to Tuesday, citing federal restrictions, Health Minister Uzoma Asagwara did not commit to ensuring Bray would have continued coverage.

Bray, who works as an IT consultant, travelled to the legislature from his hometown of Rivers to plead his case to Asagwara on Monday afternoon.

“It didn’t go as we’d hoped, unfortunately,” he wrote in a text to the Free Press.

Less than 24 hours later, Premier Wab Kinew said he was “very moved” by Bray’s advocacy in the media and announced the U-turn.

During question period, Kinew said his government was in contact with the pharmaceutical company that had been donating Bray’s drugs and “progress” had been made.

“So long as we’re around, you are going to get the health care that you need,” the NDP leader said.

Bray indicated he is “deeply grateful” for the development because it will allow him to be assessed after 12 months on the drug.

“The benefits I have already experienced make me confident that tests will show I am benefiting from treatment,” he wrote in a text.

The 30-year-old added that he’s hopeful his neurologist’s findings conclude Canada’s status-quo guidelines for ridisplam are “unsound and inadequate.”

Manitoba will continue applying pressure on the federal drug regulator, Kinew said in answering a question raised by Progressive Conservative leader Obby Khan.

“By refusing someone who has this SMA disease (ridisplam), you are essentially sentencing them to death,” Khan told reporters after question period.

The Tory MLA described what happened in the house as “bad political theatre.”

“It took a grown man to cry on TV for this premier to finally signal that he’s going to do something. It’s appalling. It’s shameful,” Khan said outside the chamber.

He called on Kinew to provide concrete details about his commitment to Bray and issue an apology for subjecting his family to continuous uncertainty.

Neither Kinew nor Asagwara have shared exactly how Bray’s newly promised coverage will work.

Bray said he was unaware if Roche had agreed to keep donating the drug in full or on a partial basis.

— with files from Carol Sanders

maggie.macintosh@freepress.mb.ca