‘A tough day’: Manitoba man denied coverage for $300K treatment

A Manitoba man says he plans to keep fighting after the province denied coverage of an expensive treatment for his condition.

The province has denied a Manitoban living with a rare genetic disease coverage of an expensive treatment.

Jeremy Bray left the Health, Seniors, and Long-Term Care minister’s office Monday with tears in his eyes after learning a medication he uses to treat his spinal muscular atrophy (SMA) will not be covered by the province.

“They were unwilling to commit to funding my treatment that runs out in a couple weeks,” Bray said. “It’s been tough. It’s been a long couple of years and it’s a tough day.”

The 30-year-old lives with SMA, a degenerative disease that causes muscles to weaken and waste away. He uses Risdiplam to treat the disease. If Bray wants to keep taking it, he will now have to pay upward of $300,000 a year.

Minister Uzoma Asagwara said the province is following Canadian Drug Agency (CDA) guidelines. The CDA has not yet reviewed Risdiplam for adults older than 25. Bray was diagnosed within a month of his 26^th birthday.

“As a government, we worked very, very hard fighting for Jeremy to ensure the CDA would perform an expedited review,” Asagwara said.

Asagwara said the province reached out to other jurisdictions for recommendations but hasn’t heard back.

Asagwara said the province convinced manufacturer Roche to extend Bray’s coverage in May under compassionate grounds.

“What we would like to see is Roche work with the CDA to use Jeremy’s case, and other cases if they exist, as a real-time, real-world example clinical study,” Asagwara said.

Bray was hoping the province would stray from CDA guidelines on the treatment.

“In April, it will be due to be assessed to see if the treatment is working,” Bray said, noting he feels it is working for him. “All I would like is for the province that I’ve lived in my entire life, the province that I love, to help me.”

Bray and his family said they are not done fighting for coverage and will explore all their options.

Progressive Conservative MLA Colleen Robbins brought Bray’s concerns forward Friday during a media conference, saying “his life and quality of life literally hang in the balance.”

On Monday, PC Leader Obby Khan called the decision not to cover the treatment “heartless.”

“I won’t stop advocating for you, Jeremy,” Khan said. We’re going to keep doing everything we can. We are optimistic and praying that there will be a way forward for you.”