Fund Life-Changing Treatments for Adults with SMA
The Issue
Background
Jeremy Bray, a 29-year-old resident of Rivers, Manitoba, is profoundly affected by spinal muscular atrophy (SMA) Type 2, a rare degenerative neuromuscular disease. This condition has severely limited his mobility, leaving him with control over only his left thumb. Despite his resilience—evidenced by his academic achievements and employment as an IT consultant—Jeremy faces the imminent loss of his remaining motor functions. The Manitoba government's refusal to fund the necessary treatment will render him unable to work and operate his electric wheelchair.
What is at stake?
Without timely intervention, Jeremy's condition will continue to deteriorate, leading to complete loss of voluntary muscle control. This progression will not only take away his ability to work, leaving him dependent on government assistance, but also increases his reliance on the healthcare system for comprehensive support. As his disease progresses, it will affect his respiratory system, leading to more frequent illnesses like pneumonia which will require hospitalizations. Conversely, access to treatments like risdiplam has been shown to halt or even reverse the progression of SMA.
Time is critical!
Immediate action is crucial to prevent further irreversible decline in Jeremy's health. The Manitoba government's current policy, which denies coverage based on age restrictions, overlooks substantial evidence supporting the efficacy of treatments like risdiplam in adults over 25. Delaying access not only jeopardizes Jeremy's well-being but also sets a concerning precedent for other adults with SMA in the province. It is imperative to reassess and amend these policies to provide equitable and life-saving treatment options without further delay.
We, the undersigned, urge the Manitoba government to:
- Reevaluate and update the criteria for funding SMA treatments, removing arbitrary age restrictions.
- Provide immediate access to risdiplam and similar therapies for Jeremy Bray and other eligible adults with SMA.
- Align provincial policies with current medical evidence and practices to ensure all individuals with SMA receive appropriate care.
By taking these steps, Manitoba can demonstrate its commitment to the health and dignity of its residents, ensuring that individuals like Jeremy Bray have the opportunity to lead fuller, more independent lives.
3
The Issue
Background
Jeremy Bray, a 29-year-old resident of Rivers, Manitoba, is profoundly affected by spinal muscular atrophy (SMA) Type 2, a rare degenerative neuromuscular disease. This condition has severely limited his mobility, leaving him with control over only his left thumb. Despite his resilience—evidenced by his academic achievements and employment as an IT consultant—Jeremy faces the imminent loss of his remaining motor functions. The Manitoba government's refusal to fund the necessary treatment will render him unable to work and operate his electric wheelchair.
What is at stake?
Without timely intervention, Jeremy's condition will continue to deteriorate, leading to complete loss of voluntary muscle control. This progression will not only take away his ability to work, leaving him dependent on government assistance, but also increases his reliance on the healthcare system for comprehensive support. As his disease progresses, it will affect his respiratory system, leading to more frequent illnesses like pneumonia which will require hospitalizations. Conversely, access to treatments like risdiplam has been shown to halt or even reverse the progression of SMA.
Time is critical!
Immediate action is crucial to prevent further irreversible decline in Jeremy's health. The Manitoba government's current policy, which denies coverage based on age restrictions, overlooks substantial evidence supporting the efficacy of treatments like risdiplam in adults over 25. Delaying access not only jeopardizes Jeremy's well-being but also sets a concerning precedent for other adults with SMA in the province. It is imperative to reassess and amend these policies to provide equitable and life-saving treatment options without further delay.
We, the undersigned, urge the Manitoba government to:
- Reevaluate and update the criteria for funding SMA treatments, removing arbitrary age restrictions.
- Provide immediate access to risdiplam and similar therapies for Jeremy Bray and other eligible adults with SMA.
- Align provincial policies with current medical evidence and practices to ensure all individuals with SMA receive appropriate care.
By taking these steps, Manitoba can demonstrate its commitment to the health and dignity of its residents, ensuring that individuals like Jeremy Bray have the opportunity to lead fuller, more independent lives.
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Petition created on January 17, 2025