Calls for province to cover pricey medication for Manitoban battling rare genetic disease

A pharmacist fills prescriptions of risdiplam, a survival motor neuron-2 mRNA splicing modifier used to treat spinal muscular atrophy. (File Image)

A Manitoba man battling a rare genetic disease is set to lose coverage of a drug that costs hundreds of thousands of dollars a year, as the opposition Tories call on the province to step up and foot the bill.

Jeremy Bray lives with spinal muscular atrophy (SMA)—a genetic disease that affects the central nervous system, peripheral nervous system, and voluntary muscle movement.

Risdiplam, a medication used to treat the disease, costs upwards of $300,000 a year.

The province told CTV News it persuaded the drug manufacturer Roche to extend free coverage to Bray in May based on compassionate grounds.

But now, the treatment is being withdrawn, and Bray is now expected to pick up the hefty tab.

Progressive Conservative MLA Colleen Robbins said the medication makes a remarkable difference in Bray’s life. She called on the province to step up to the plate and cover the cost.

“The ministers need to stop pointing fingers at the drug company and Canada’s drug agency,” she said Friday at a news conference.

“His life and quality of life literally hang in the balance.”

Manitoba Health Minister Uzoma Asagwara fired back, saying the former Tory majority government did not cover Bray’s medication nor did they advocate for him when he raised the coverage issue years ago.

Asagwara added the province is following Canadian Drug Agency (CDA) guidelines, which don’t recommend the drug be used for his age group due to a lack of clinical testing data.

Additionally, the health minister said they have called on the drug company to work with the CDA on expedited clinical trials using Bray and others living with the disease as participants.

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

- With files from CTV’s Milan Lukes