In recent years, Canadians living with a neuromuscular disorder have experienced a remarkable shift in their life trajectories. Advances in disease-modifying treatments and improvements in care standards in addition to expertise shared by people with lived experiences, have turned what were once dire diagnoses into opportunities for extended, fuller lives. Diseases like spinal muscular atrophy (SMA) and Duchenne muscular dystrophy, which once carried poor prognoses, are now considered manageable conditions, enabling individuals to reach adulthood, pursue careers, contribute and participate to and in society. But while science and people with lived experiences have made incredible strides, policies and support systems have failed to keep pace.
A recent Burden of Inherited Neuromuscular Diseases study highlights the gap between medical progress and policies meant to support Canadians affected by neuromuscular disorders. Canadians affected by neuromuscular disorders carry the burden of significant out-of-pocket expenses for essential medical equipment, assistive devices, home care, accessible housing and services that are required to live independently and ensure caregiver safety. This puts the dream of independent living and the right to choose where and how they reside out of reach for far too many.
Take, for example, Crystal Rondeau, a 35-year-old woman in Winnipeg living with SMA Type 2. Despite her incredible resilience and that of family and friends, as well as her tireless advocacy for herself and others, Crystal is forced to live in a hospital due to a lack of proper home care support. Crystal, along with so many others have taught us that their needs are complex and individualized supports are required. Often, these needs cannot be met in a facility or medical setting for the long term. Crystal’s situation is not an isolated one. Across the country, individuals living with a neuromuscular disorder are forced into hospitals or institutional settings—not because of medical necessity, but because of gaps in government support and inadequate funding for necessary home care assistance.
The situation is about more than just financial hardship. It is about dignity and the ability to choose where to live when affected by a neuromuscular disorder. The federal and provincial governments must recognize that providing the right supports is not just a moral obligation—it is an economic necessity. When people like Crystal are forced to stay in hospitals for an extended period of time, it places a tremendous strain on the healthcare system, often costing more than what it would take to fund community-based care and provide the necessary supports at home.
The solution is clear: governments must address the systemic funding gaps that force people with neuromuscular disorders into institutions or hospital beds. We need a comprehensive, universal approach to funding and support that empowers Canadians affected by neuromuscular disorders to choose how and where they live, fully participate in their communities, and ensure the safety of their caregivers.
Medical advancements have progressed, but policy has failed to keep pace. It’s time for decision-makers to act and ensure that Canadians with neuromuscular disorders can live with the dignity, independence, and support they deserve. Crystal and her family have a clear plan for her to return home, but they urgently need financial support for her personal care. This is not about replacing family support—far from it. Crystal’s mother has always been, and will continue to be, a dedicated caregiver. However, like any caregiver, she also needs time to rest and recover.
Despite numerous applications for government assistance and relentless advocacy, Crystal remains stuck in a hospital bed with no indication that the necessary resources will be provided for her to go home. This is unacceptable. The lack of funding for home care forces individuals like Crystal into institutional settings, stripping them of their autonomy and placing unnecessary strain on families. Our governments must act now to remove these barriers and support Crystal’s right to live at home with the care she needs.
Everyday, Crystal and others remind us how living with a neuromuscular disorder can feel like a constant loss of control as their condition evolves. Science has helped, slowing down the progression of some neuromuscular disorders. It is now time for our governments to ensure that Crystal and other Canadians have options, that their caregivers are safe and well. And yes, that they have control of their lives.
Muscular Dystrophy Canada continues to advocate in partnership with Crystal and her family. Medical breakthroughs are on the horizon: now it is time for us to make the policy breakthroughs that will enable all Canadians affected by a neuromuscular disorder to thrive.
Stacey Lintern
CEO, Muscular Dystrophy Canada
