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Our mission is to empower people living with neuromuscular diseases to live longer, more independent lives.
Muscular Dystrophy Association's Statement on HHS Restructuring
Washington, D.C., April 3, 2025 – In response to this week’s substantial reductions and restructuring announced by the Department of Health and Human Services (HHS), the Muscular Dystrophy Association (MDA) has released the following statement from Paul Melmeyer, Executive Vice President, Public Policy and Advocacy:
“The Muscular Dystrophy Association is deeply concerned about how this week’s reductions in force and comprehensive restructuring at the Department of Health and Human Services (HHS) will impact the neuromuscular disease (NMD) community. The adjustments in the sweeping reforms affect offices, programs and services that play a critical role in research, drug and therapy development, and access to care and services. These are vital programs that serve children and adults across the MDA community.
At the Food and Drug Administration (FDA), leadership and staffing reductions imperil timely drug, biologic, gene therapy, and medical device review that hold life-changing and lifesaving potential for people with neuromuscular disease. Opportunities for patient engagement in drug development and regulatory decision-making will be affected also, along with the agency’s ability to provide timely and detailed guidance to industry on advancing innovative and urgently needed therapies.
At the National Institutes of Health (NIH), intramural and extramural research that are key to unlocking potential therapies are likely to disrupted. NIH’s ability to conduct research and administer grants efficiently likely will be compromised by these actions as well, potentially slowing the pace of discoveries that could end neuromuscular and other devastating diseases.
Additionally, reductions in force at the Administration on Community Living (ACL) will adversely impact independent living centers, employment programs, vital state protection and advocacy (P&A) agency oversight, and inter-agency coordination. These are functions at the heart of quality of life for the children, adults, and family caregivers in MDA’s service community.
At the Centers for Disease Control and Prevention (CDC), changes to programs and staffing will impede efforts to understand the epidemiology behind neuromuscular diseases. We anticipate those changes will also hinder the administration of newborn screening for progressive and fatal neuromuscular diseases such as spinal muscular atrophy, Pompe disease, and Duchenne muscular dystrophy. Similarly, restructuring and reductions at the Health Resources and Services Administration (HRSA) could negatively influence the availability of essential health services for the NMD community and beyond. The Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC), a critical component of our newborn screening program, was terminated entirely.
Additionally, the closure of CMS’ Office of Equal Opportunity and Civil Rights (OEOCR) raises questions about the commitment to ongoing enforcement of key protections under civil rights laws, including the Americans with Disabilities Act and Civil Rights Act of 1973. We urge careful and compassionate consideration of how these changes might affect access to care and coverage for people with neuromuscular disease.
As we have done for 75 years, MDA will work with our community and the legislature to evaluate unintended consequences of these recent actions on the programs and services our community needs. We are eager to engage with policymakers in the Congress to safeguard critical programs and services for our community.”
About Muscular Dystrophy Association
Muscular Dystrophy Association (MDA) is the #1 voluntary health organization in the United States for people living with muscular dystrophy, ALS, and over 300 other neuromuscular conditions. For 75 years, MDA has led the way in accelerating research, advancing care, and advocating support and inclusion of families living with neuromuscular disease. MDA's mission is to empower the people we serve to live longer, more independent lives. To learn more visit mda.org and follow MDA on Instagram, Facebook, X, Threads, TikTok, LinkedIn, and YouTube
About Muscular Dystrophy Association’s 75th Anniversary
In 2025, the Muscular Dystrophy Association proudly marks 75 years legacy, impact and momentum in the fight against neuromuscular diseases. Since our founding, MDA has been at the forefront of research breakthroughs, providing access to comprehensive care, and championing the rights of people living with muscular dystrophy, ALS, and over 300 other neuromuscular diseases. This milestone has been made possible by generations of dedicated support from people living with neuromuscular disease, their families, researchers, clinicians, volunteers, and donors—who boldly drive our mission forward. As we look ahead, we remain committed to honoring this legacy, building on the impact we’ve made together, and continuing our momentum toward transformative progress for people living with neuromuscular disorders.
