February 23, 2021 – Many people living with neuromuscular disorders (NMD) are at greater risk of developing serious symptoms and complications as a result of COVID-19 due to their often pre-existing cardiac and respiratory issues and chronic comorbidities. As the voice of the NMD community in Canada, Muscular Dystrophy Canada (MDC) is calling on governments to prioritize people living with hereditary and acquired neuromuscular disorders in their vaccination roll-out.
Specifically, MDC is asking that the following groups of people with neuromuscular disorders be prioritized: adults requiring multiple caregivers or complex ongoing support in the home, community or institutional setting; the caregivers or home care workers who provide ongoing support to children and adults with neuromuscular disorders; adults with severe or unstable respiratory issues; adults with reliance on home ventilation; adults with clinically relevant impairment of heart function; and, adults receiving immunosuppressants.
“We acknowledge that all Canadians are included in vaccine roll-out plans, but persons with a NMD are not receiving the prioritization they require – they are being left behind despite the fact that they are at high risk for exposure and life-threatening complications, and are already frequent users of our healthcare system,” said Stacey Lintern, CEO, Muscular Dystrophy Canada.
Prioritizing individuals affected by neuromuscular disorders in vaccination roll-out plans will reduce strain on our healthcare facilities, and protect the vulnerable persons living with NMDs, their family members and homecare professionals who have been working to protect and provide high quality care to these individuals throughout the pandemic.
“Many individuals with neuromuscular disorders require support to perform certain daily activities, such as personal mobility, dressing, or grooming and rely on informal caregivers – family, friends, neighbours – and formal caregivers – night nurses, personal support workers, personal care attendants,” said Lintern.
Since the pandemic began, individuals with neuromuscular disorders have taken additional precautions to stay protected. They have been forced to make alternative arrangements for home care supports, such as increasing their reliance on family members within their households and/or limiting their personal care to one or two attendants from the community.
Lintern added, “While individuals with high-risk chronic conditions and their caregivers’ are listed in vaccine roll-out plans, when it comes to vaccination and ranking by risk, some individuals will be much more vulnerable than others. Additionally, individuals with neuromuscular disorders are not specifically mentioned in examples provided to date leaving much room for inconsistencies and interpretation. We want governments to recognize the critical need of the NMD community, to ensure that persons with NMDs are specifically noted as high-risk in roll out plans and prioritize their health, just as we do.”
ABOUT MUSCULAR DYSTROPHY CANADA (MDC)Muscular Dystrophy Canada’s mission is to enhance the lives of those impacted with neuromuscular disorders by continually working to provide ongoing support and resources while relentlessly searching for a cure through well-funded research. Learn more about MDC online, or call our toll-free number at 1-800-567-2873.
MEDIA CONTACT INFORMATIONHeather Rice
Muscular Dystrophy Canada