Rivers Resident Urges Government Support for Vital Drug Coverage

A resident of Rivers, Manitoba, is appealing for government intervention to secure funding for his life-sustaining medication. Jeremy Bray, 30, who has been diagnosed with a rare motor neuron disease, faces the end of his drug coverage this month. His family is concerned about the financial burden of treatments, which are estimated to cost around $300,000 annually.

Bray has been using a medication called risdiplam for over six months, which helps him maintain the functioning of his left thumb, face, and voice. This treatment is crucial for his daily activities, including operating his wheelchair and working as a data consultant for the Louis Riel School Division. “It’s been pretty devastating for us to once more be back in this position,” Bray stated, indicating that his family may have to sell their home to afford the necessary treatments.

The situation escalated last week when Bray received a call from a patient support program informing him that funding from the pharmaceutical company Roche would be cut off. Prior to this, he had relied on “compassionate coverage” from the company, which allowed him to access risdiplam at no cost. Despite his efforts since 2021 to obtain coverage through Manitoba Health, the province has remained firm in adhering to the guidelines set by Canada’s Drug Agency (CDA), which does not recommend the drug for individuals over 25 due to a lack of sufficient data.

Bray highlighted his struggles to obtain the medication, including attempts to communicate with Manitoba Health. “They requested a review of their recommendation,” he explained. Although the review took place over the summer, it did not lead to any changes in policy.

During a press conference, Manitoba’s Health Minister Uzoma Asagwara acknowledged the province’s ongoing efforts to advocate for Bray and others in similar situations. The government has urged the CDA to expedite further clinical studies in order to establish updated recommendations for patients over 25. “We’re going to keep fighting for Jeremy, we’re going to keep fighting for his family,” Asagwara assured reporters.

Despite these efforts, the minister did not confirm whether the province would provide funding for Bray’s treatment if Roche’s coverage cannot be extended. In contrast, Bray pointed out that other provinces, such as Quebec, do not impose age restrictions on treatment access, while Alberta and Saskatchewan consider funding on a case-by-case basis.

Local representatives, including Grant Jackson, the Member of Parliament for Brandon-Souris, have expressed concern that individuals like Bray may feel compelled to relocate to access necessary healthcare. As Jackson noted, “What I’ve heard from other adults on risdiplam is that many people see the most improvement or the most benefits after about a year.”

Bray reported that the medication has significantly reduced his fatigue, enabling him to work longer hours. He also mentioned feedback from family members who have observed improvements in his speech and facial expressions. “I’ve also been told from family members I don’t see regularly that my voice is clearer than it used to be,” he remarked.

Looking ahead, Bray intends to meet with Minister Asagwara again on September 25, 2023, to discuss the future of his treatment. In a statement, Roche’s communications manager, Amy Haddlesey, explained that the company cannot continue to offer the drug under the current circumstances, emphasizing that such practices do not effectively address broader funding issues within the healthcare system.

As the community rallies around Bray, the outcome of his appeal could have implications for others facing similar challenges in accessing critical medical treatments.