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House Passes Cuts to Care; MDA Urges Senate to Reject House Bill that Reduces Coverage

Washington, D.C. – Thursday, May 22, 2025 – Muscular Dystrophy Association (MDA) released the following statement today, expressing its serious concerns about the House passage of legislation this morning that directs significant cuts to Medicaid and makes reduced access to affordable health care more likely.

This legislation significantly cuts Medicaid and other sources of coverage, raises costs for families and individuals, imposes unnecessary administrative barriers, and potentially reduces access to care for many in the neuromuscular community. We are highly concerned by late changes made to the legislation that make the proposal even more harmful, including dangerously accelerated implementation timelines that leave states and individuals little time to prepare. While the Senate has yet to deliberate on this bill before it becomes law, this vote represents a further step towards a perilous path of jeopardizing access to necessary services in neuromuscular care, including personal care assistance, long term services and supports, specialty care, and more.

Nonpartisan estimates from the Congressional Budget Office demonstrates the changes in the proposed legislation could result in as many as 13.7 million people losing their health coverage over the next 10 years, Given the community’s high utilization of Medicaid, those at risk of losing coverage would likely include people living with a neuromuscular disease. These proposals threaten access to critical services and care for the neuromuscular community, risking longer delays for home and community-based services, higher out of pocket costs, fewer specialists, and rural hospital closures.

Changes in the proposal passed by the House include:

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

In addition to harmful cuts to Medicaid and the ACA, this budget proposal could force upwards of $500 billion in cuts to Medicare over the next 10 years, likely limiting access to care and services for the neuromuscular community on Medicare. The legislation now moves to the Senate for further consideration.

MDA strongly urges the Senate to reject cuts to Medicaid, Medicare, and private insurance included in the House legislation. We request that they consider solutions that make healthcare more accessible and affordable, not less, for people living with neuromuscular conditions and other disabilities.

We will keep the neuromuscular community informed as the legislative process continues. In the meantime, we ask the community to please stay engaged, speak out, and contact their Senators 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.