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Muscular Dystrophy Association Releases FAQs for the Neuromuscular Disease Community for Access to the COVID-19 Vaccines

NEW YORK, NY – December 15, 2020 -- The Muscular Dystrophy Association (MDA) today released Frequently Asked Questions (FAQs) on the COVID-19 vaccines specifically for the neuromuscular disease (NMD) community the organizations serves. MDA continues to advocate for priority COVID-19 vaccine access for people living with muscular dystrophy, ALS, and related neuromuscular diseases. The FAQs provide the NMD community with facts about the current and expected future vaccines authorized by the FDA for distribution in the United States and information on priority access for this at-risk community.

A recent Facebook Live event moderated by MDA’s Executive Vice President and Chief Research Officer, Sharon Hesterlee, PhD, featuring MDA’s Chief Medical Advisor Barry Byrne, MD, PhD, and MDA Board member Elizabeth McNally, MD, addressed the community directly about the COVID-19 vaccines.

“Our older patients and those with cardiorespiratory problems are at great risk and hopefully will be some of the earliest prioritized to receive the vaccines when they are made available after the healthcare worker community. There are some minor side effects that occur that should be anticipated. If we explain it well to patients, I hope that there is broad participation because that’s what’s going to be needed for everyone to be safe in the long run,” said Dr. Byrne.

The Facebook Live event also discussed MDA’s ongoing vaccine prioritization advocacy efforts and what the NMD community can do as the vaccines continue to roll out.

“We know that people with neuromuscular diseases for various reasons can be in the high-risk group,” said Dr. Hesterlee. “MDA will continue reaching out to local and state jurisdictions to advise them about the inclusion of individuals with neuromuscular disease in the vaccine distribution.”

Continued vigilance in following CDC guidelines including wearing a mask, practicing social distancing, and hygiene, was reinforced as well. “The key part about these vaccines is it’s going to take a while for all of this to work so while we’re all hearing a lot of excitement about vaccines having about ninety percent efficacy, the other thing that has ninety percent efficacy is wearing a mask,” said Dr. McNally.

MDA represents more than 300,000 people in the United States living with more than 40 neuromuscular diseases. In October, MDA encouraged the U.S. Centers for Disease Control and Prevention (CDC) to recommend that people living with neuromuscular diseases have early access to any federally authorized COVID-19 vaccine via a letter to members of the CDC Advisory Committee on Immunization Practices (ACIP), who are helping to guide the allocation and distribution of COVID-19 vaccines.

MDA asked specifically that people living with neuromuscular diseases have Phase 1 access to any vaccine — after healthcare workers and other priority populations— due to the systemic impact of neuromuscular diseases on the body, which place patients at higher risk of COVID-19 complications. MDA has continued to advocate and provide resources to the neuromuscular community since the pandemic began at mda.org/covid19.

“MDA strongly believes that individuals living with a neuromuscular disease should be included in Phase 1 of vaccination administration due to the complexity of the multi-system impact of neuromuscular diseases that results in co-morbidities that cause a high risk for adverse COVID outcomes,” states the letter signed by Paul Melmeyer, MDA’s Director of Regulatory Affairs. “Consequently, we request ACIP to include those with neuromuscular diseases in Phase 1 of your official recommendations.”

As ACIP recommendations have evolved, MDA is now seeking to ensure the neuromuscular disease community accesses any COVID-19 vaccine in Phase 1 of state and jurisdiction distribution and will organize the neuromuscular advocacy community to reach out to jurisdictions to make this request.

“Additional common symptoms in neuromuscular diseases could lead to a higher risk of negative outcomes from COVID-19,” the letter states. “For example, these diseases can weaken the pulmonary muscles and diaphragm over the progression of the disease, increasing the risk of severe pulmonary infection, and making the outcome of COVID-19 particularly dangerous.”

MDA also provides support for the NMD community via the MDA Resource Center, available to answer the NMD community’s questions at resourcecenter@mdausa.org.

About the Muscular Dystrophy Association

For 70 years, the Muscular Dystrophy Association (MDA) has been committed to transforming the lives of people living with muscular dystrophy, ALS, and related neuromuscular diseases. We do this through innovations in science and innovations in care. As the largest source of funding for neuromuscular disease research outside of the federal government, MDA has committed more than $1 billion since our inception to accelerate the discovery of therapies and cures. Research we have supported is directly linked to life-changing therapies across multiple neuromuscular diseases. MDA's MOVR is the first and only data hub that aggregates clinical, genetic, and patient-reported data for multiple neuromuscular diseases to improve health outcomes and accelerate drug development. MDA supports the largest network of multidisciplinary clinics providing best-in-class care at more than 150 of the nation's top medical institutions. Our Resource Center serves the community with one-on-one specialized support, and we offer educational conferences, events, and materials for families and healthcare providers. MDA Advocacy supports equal access for our community, and each year thousands of children and young adults learn vital life skills and gain independence at summer camp and through recreational programs, at no cost to families. During the COVID-19 pandemic, MDA continues to produce virtual events and programming to support our community when in-person events and activities are not possible. MDA’s COVID-19 guidelines and virtual events are posted at mda.org/COVID19. For more information, visit mda.org.