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Proposed Medicaid and Health Coverage Cuts Raise Substantial Concern for the Neuromuscular Community

Washington, D.C. – Wednesday, May 14, 2025 – Muscular Dystrophy Association (MDA) released the following statement in response to the House Energy and Commerce Committee cuts to Medicaid and other affordable health coverage.

“The Muscular Dystrophy Association (MDA) is deeply concerned by a bill passed today by the House Energy and Commerce Committee that includes major proposed cuts to Medicaid and other affordable health coverage programs. If passed into law, these changes could make it significantly harder for millions of Americans, including many in the neuromuscular disease community, to access the care they need to live independently and manage their health.

We want to be clear: these proposals are not yet law, but they have taken a major step forward in the legislative process.

According to MDA’s Neuromuscular Observational Research (MOVR) data, nearly 40% of adults and children living with neuromuscular diseases rely on Medicaid to access vital services, including home- and community-based supports that private insurance often does not cover. These services help people with neuromuscular conditions stay healthy, live at home, and participate in work and community life.

According to nonpartisan estimates from the Congressional Budget Office, the changes in this package could result in 13.7 million people losing their health coverage over the next 10 years. This includes:

• New work reporting requirements for some Medicaid enrollees
• Increased out-of-pocket costs for certain services
• Reduced flexibility for states to fund their Medicaid programs
• Added paperwork and reduced enrollment periods for people seeking coverage through the Affordable Care Act (ACA) marketplace
• The failure to renew financial help (known as Advanced Premium Tax Credits or APTCs) that many families rely on to afford ACA plans

Together, these changes could create new barriers to care for people already managing complex medical needs. For the neuromuscular community, that means real risks: missed specialist appointments, delayed access to equipment, longer waitlists for home and community-based services, and even greater chances of being placed in institutions unnecessarily.
MDA’s mission is to empower the people we serve to live longer, more independent lives. These proposed cuts would do the opposite, and we are committed to fighting back.

While we appreciate the inclusion of positive provisions—such as the Accelerating Kids’ Access to Care Act and reforms to increase transparency in prescription drug pricing—we cannot support them within this package at the cost of widespread harm to healthcare access overall.

MDA strongly urges members of the full House and Senate to reject cuts to Medicaid and the ACA marketplace and instead work toward solutions that make healthcare more, not less, accessible and affordable for people with neuromuscular conditions.

We will keep our community informed as this legislation moves forward. In the meantime, we encourage everyone to stay engaged, speak out, and contact their lawmakers to express their concerns at MDA.org/Medicaid.

Media contact press@mdausa.org.

The Muscular Dystrophy Association is a nonpartisan 501(c)(3) organization. As strategic partners with the federal government, we work with public officials and administrations of all parties to advance policies that protect the rights, inclusion, dignity, and agency of people with neuromuscular disease. We do not endorse or support candidates or engage in political campaigns or activities. For questions regarding our advocacy work or policy positions, contact advocacy@mdausa.org.

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, Bluesky, TikTok, LinkedIn, and YouTube

About Muscular Dystrophy Association’s 75^th 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. Learn more at MDA75.org.