Rivers Resident Urges Government Support for Life-Saving Medication

A man from Rivers, Manitoba, is calling on the provincial government to intervene in his access to a vital medication after his current coverage is set to expire this month. Jeremy Bray, who has been living with a rare motor neuron disease known as spinal muscular atrophy, fears his family will struggle to afford the treatment without financial assistance.

Bray, 30, has been using a drug called risdiplam for over six months. This medication has been crucial in helping him maintain the function of his left thumb, face, and voice. He relies on his thumb to operate his wheelchair and perform his duties as a data consultant for the Louis Riel School Division.

Last week, Bray received alarming news from a patient support program indicating that funding from the pharmaceutical company Roche would be terminated. The annual cost of the treatment is estimated at $300,000, prompting concerns that his family may have to sell their home to cover expenses. “It’s been pretty devastating for us to once more be back in this position,” Bray told a local media outlet.

Despite the challenges, Bray has been able to access risdiplam through “compassionate coverage” since May. However, Canada’s Drug Agency does not currently recommend the treatment for patients over 25 due to limited data in this age group. Bray has been advocating for access to this medication since 2021, sending letters to Manitoba Health for assistance.

Unfortunately, Manitoba Health has not deviated from the Drug Agency’s recommendations. Bray stated, “They requested a review of their recommendation,” but the results of that review did not alter the situation. Until recently, he had not been informed about the source of his treatment funding.

During a press conference on Friday, Manitoba’s Health Minister Uzoma Asagwara acknowledged the province’s ongoing discussions with Roche and the federal agency to facilitate clinical studies involving older patients. She affirmed their commitment to advocate for Bray and his family. “We’re going to keep fighting for Jeremy, we’re going to keep fighting for his family,” Asagwara stated.

The minister did not confirm whether the province would cover Bray’s treatment if Roche’s funding cannot be extended. In contrast, provinces like Quebec do not impose age restrictions on accessing risdiplam, while others, such as Alberta and Saskatchewan, provide funding on a case-by-case basis.

Local MLA Colleen Robbins urged Asagwara at the Manitoba legislature to ensure Bray’s medication is fully funded. Similarly, MP Grant Jackson expressed concern that individuals like Bray might have to leave Manitoba to meet their healthcare needs. “Right now, there is no cure for spinal muscular atrophy, but treatments can slow its progression,” Jackson noted.

Bray explained that the medication has positively impacted his life, allowing him to feel less fatigued and work longer hours. He has received feedback from family members stating that his voice is clearer and his facial expressions are more expressive than before. He is eager to scientifically demonstrate the benefits of risdiplam for older adults.

In a statement, Roche’s communications manager Amy Haddlesey emphasized that the company cannot continue providing the medication indefinitely, as it does not offer a sustainable solution for patients or the healthcare system. She pointed out that the Drug Agency provides non-binding recommendations, leaving it up to provincial drug plans to make their funding decisions.

Bray is scheduled to meet with the health minister again on Monday to discuss his situation further as he continues to advocate for his right to necessary treatment.