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- calendar_today October 28, 2026
Manitoba Patient Retains Life-Saving Spinal Muscular Atrophy Drug After Policy Change
Jeremy Bray, a 31-year-old from Manitoba, will continue to have access to a life-sustaining drug used to halt the progression of his degenerative disease, thanks to recent changes in drug policy and provincial coverage decisions. This follows a reversal by Canada’s Drug Agency on their previous recommendation against the drug’s use in adult patients over 25 years old.
The Fight for Access to Degenerative Disease Treatment
Bray has Type 2 spinal muscular atrophy (SMA), a disease that gradually strips individuals of the ability to move their muscles. For Bray, movement is now mostly limited to his mouth, parts of his face, and one thumb—which allows him to use his motorized wheelchair and the computer he relies on for work as a data consultant in Rivers, Manitoba.
Bray’s pursuit of a drug to slow his disease’s progression has been a years-long effort. He sought access to risdiplam (brand name Evrysdi), estimated to cost approximately $300,000 annually. “It’s a huge relief,” Bray said of the latest decision, expressing gratitude that he no longer has to fight for access to his treatment.
Provincial Coverage After Advocacy and Initial Hesitation
Manitoba’s Health Minister Uzoma Asagwara first negotiated with Roche, the drug’s manufacturer, to provide risdiplam to Bray on compassionate grounds in 2025. The province hoped Bray’s usage would help demonstrate its effectiveness in adult SMA patients, as clinical test data for this age group was limited and had prompted the federal agency’s earlier reluctance.
After six months using risdiplam, Bray noticed improvements such as a stronger voice, more expressive facial movements, and the ability to work longer hours before needing rest. However, Roche announced in November 2025 that it would end its compassionate supply. This forced Bray to request the provincial government reconsider its position.
Manitoba Reverses Its Stance Following Emotional Plea
Initially, the provincial government declined to permanently cover the drug. Bray described a meeting with Minister Asagwara leaving him in tears. Shortly afterward, Premier Wab Kinew was reportedly moved by Bray’s plea and announced Manitoba would fund his treatment for at least one year.
Last week, Canada's Drug Agency issued a draft recommendation supporting expanded public coverage for spinal muscular atrophy treatments in adults, including risdiplam. Though non-binding and requiring further negotiations with the manufacturer, Asagwara called Bray directly to confirm that Manitoba would follow this new recommendation and provide ongoing coverage.
Role of Advocacy in Shaping Drug Policy
The agency’s new review included input from patients such as Bray, clinicians, and experts. The report acknowledged limited evidence on the drug’s success in adults due to the rarity of spinal muscular atrophy but noted that positive results in some patients justify expanded access. Asagwara praised Bray’s efforts, saying, “This is the power of when Manitobans share their stories.”
Brandon-Souris MP Grant Jackson, who formerly represented Bray as the local MLA, also highlighted the persistence needed to change government policy in complex cases involving rare disease drugs.
Personal Impact and Future Outlook for Adult Patients
Before treatment, Bray faced daily uncertainty about losing further muscle function, having already lost the use of his head, arms, hands, and legs over time. Now, with assurance of continued treatment, he reports significant improvement in mental health and overall outlook. “Being on treatment is a real peace of mind for my family, myself, anybody who knows me,” Bray said.
Bray expressed thanks to the public and supporters who advocated for his access, marking the conclusion of a long fight for the necessary care for adults with SMA seeking effective treatment options in Manitoba’s healthcare system.
Source: cbc.ca.
