Jeremy Bray, a 29-year-old man from Rivers, Manitoba, has made an urgent plea for the provincial government to provide funding for his treatment, as he battles the progressive effects of spinal muscular atrophy (SMA). Despite the province’s ongoing request to Canada’s Drug Agency (CDA) to reconsider its stance on treatment for adults over 25, Bray argues that time is running out for him.
Bray, a data consultant, has been living with Type 2 SMA, a rare and degenerative condition that progressively weakens his muscles. Currently, he has lost most of his ability to move, relying only on the use of one thumb and his mouth, though these muscles are also weakening. There is no known cure for SMA, but treatments can halt its progression and, in some cases, offer improvement.
On Tuesday, Bray met with Manitoba Health Minister Uzoma Asagwara at the Manitoba Legislature, where the province confirmed it had requested an “urgent review” from the CDA regarding the drug risdiplam, sold under the brand name Evrysdi. The request follows the province’s position that the drug, which has shown promise in treating SMA, should be reconsidered for adults over 25, a group excluded from clinical trials.
The CDA currently does not recommend the drug for adults aged 25 and older, citing the lack of clinical trial data for this demographic. Despite this, Manitoba’s health officials are now pushing for the agency to re-evaluate the “real-world evidence” provided by local neurologists. This evidence suggests that risdiplam has been beneficial for adult patients in some provinces, including Quebec, where there are no age restrictions for the treatment.
In his meeting with Asagwara, Bray emphasized the urgency of his situation. “I hope the province will take emergency measures to provide me with the treatment now,” Bray said. “We don’t know how long the CDA process will take, and my condition is deteriorating rapidly.”
Asagwara stated that while the province is pushing for a reevaluation, Manitoba will not override the CDA’s guidelines in the meantime. “In Manitoba, we follow expert recommendations from national bodies like the CDA,” Asagwara explained. “However, we have asked the agency to consider real-world evidence to see if new recommendations can be made.”
Manitoba currently funds risdiplam for patients under the age of 25, but Bray’s situation highlights a growing frustration for those affected by SMA in the province. Other regions, such as Quebec, Alberta, Saskatchewan, and Ontario, have begun making exceptions to provide the drug to adults, often due to the compelling real-world success stories.
Bray’s family has watched him gradually lose his independence, with his mother, Tara Bray, expressing the emotional toll of seeing his condition worsen while other provinces approve treatment for adults. “It’s painful watching him go from being able to do things to only having the strength of his thumb,” she said, expressing hope that the province will eventually approve the treatment for her son.
Despite the provincial request for a review, time remains a critical factor. Bray’s family fears that without timely intervention, he may lose the ability to speak, drive his wheelchair, or maintain any form of independence within months.
Darren Bray, Jeremy’s father, expressed his concern over the delay in the treatment. “It wouldn’t be an exaggeration to say that within six months he may not have the ability to drive his wheelchair, or talk,” he said.
Local political representatives, such as PC MLA Grant Jackson, have also voiced their support for Bray. “While I understand the need for a broad review of this policy, in Jeremy’s case, immediate action is needed,” Jackson said. “The provincial health department should take bold action and provide this treatment now.”
As Manitoba waits for a response from the CDA, Bray remains hopeful but cautious. “We need the government to act quickly,” he said. “Every day without treatment means I lose a bit more of my independence.”
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