Dear Committee Members,
On behalf of individuals living with Duchenne muscular dystrophy, their families, and caregivers served by CureDuchenne, I am writing to urge the Committee to include individuals with Duchenne in its recommendations for sub-populations to receive approved or authorized COVID-19 vaccines in Phase 1B of distribution. We also urge that caregivers of individuals with Duchenne be prioritized in vaccine distribution. Our views, outlined in greater detail below, align with those expressed by the Muscular Dystrophy Association in its comments to your Committee (MDA Comments to CDC ACIP on NMDs in Phase 1B COVID Vaccine.pdf (cqrcengage.com) and the EveryLife Foundation’s comments to the National Academy of Sciences (NAS-Vaccine-Framework-Comments.EveryLife-Foundation.9.4.20-002-1.pdf
CureDuchenne is recognized as a global leader in research, patient care and innovation for improving and extending the lives of those with Duchenne, a progressive, neuromuscular disease with systemic impact. Nearly 15,000 boys are living with the disease in the United States alone and over 300,000 worldwide. Duchenne results from a defective gene responsible for producing the key muscle protein dystrophin. Without dystrophin, cells become easily damaged and die, resulting in skeletal muscle weakness, and heart and breathing failure. The average life expectancy for an individual with Duchenne muscular dystrophy is approximately 30 years of age; cardiomyopathy, a high-risk heart condition, is a hallmark of every person diagnosed with Duchenne and some female carriers. In addition to cardiomyopathy, there are other reasons why the current recommendations qualify young men (aged 18 or over) for Phase 1B vaccine access.
- Many individuals living with Duchenne utilize corticosteroids, which suppress the immune system.
- Due to lack of mobility and corticosteroid side effects, many individuals living with Duchenne are obese.
- Pulmonary function is impacted as respiratory and chest wall muscles deteriorate, increasing an individual’s risk of pneumonia.
Given these increased risks, we ask that adults living with Duchenne and carriers be included in ACIP’s recommendations of Phase IB initial distribution of vaccines. We ask that children under age 16 with Duchenne be added to that priority level when FDA authorizes or approves a vaccine for pediatric use. Additionally, because COVID vaccines are not yet approved for pediatric use under age 16, we add our support to the request made by the EveryLife Foundation for Rare Diseases that vaccination be prioritized for both paid and family caregivers for individuals living with Duchenne. Caregivers’ vaccination will serve to protect those children who are not yet able to be vaccinated, helping to reduce their vulnerability to increased COVID-19 morbidity and mortality.
Thank you for the opportunity to express our gratitude for your work and offer comments, and for your continued work on behalf of the public health. If you have any questions about these comments, please contact Erin Frey, Senior Director of Advocacy at (302) 357-8741 or firstname.lastname@example.org.