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Our mission is to empower people living with neuromuscular diseases to live longer, more independent lives.
Congress Finalizes Historic Cuts to Care; MDA Pledges to Defend Community
Washington, D.C., Thursday, July 3, 2025 – The Muscular Dystrophy Association (MDA) released the following statement today, expressing disappointment on Congressional passage of legislation that makes substantial cuts to Medicaid, Medicare, and the Affordable Care Act (ACA).
MDA expresses our disappointment with Congressional passage of legislation that non-partisan evaluators estimate could raise the number of uninsured Americans by at least 17 million people, including children and adults with neuromuscular disease. The President is expected to sign this legislation into law shortly.
This is not the outcome we wanted, but we are incredibly proud of the neuromuscular disease community’s relentless advocacy in defending access to care. More than 3,100 MDA advocates sent over 13,000 letters to Congress, a record level of engagement for any MDA advocacy campaign. Over 40 neuromuscular organizations banded together calling on Congress to reject cuts to care. Many members of our community wrote op-eds and letters-to-the-editors that were published in local papers across the nation, and conducted meetings with their Congresspersons.
The proposals passed by Congress cut $1 trillion from healthcare programs including Medicaid, Medicare, and the Affordable Care Act (ACA). These cuts are anticipated to generate longer delays and outright denials for home and community-based services, higher out-of-pocket costs for all, onerous paperwork requirements, barriers to accessing specialists, and more. The bill also makes harmful changes to Medicare by preventing the implementation of a rule that would have lowered premiums and cost sharing for beneficiaries, streamlined certain enrollment processes, and expanded access to low-income subsidies.
While proponents of the legislation purport that people with disabilities will not be affected, we know there is no way to shield our community from these additional barriers to care. For example, state Medicaid budgets will be severely curtailed, likely forcing many states to roll back the home-and-community-based care our community relies on. Adults with neuromuscular diseases will have to repeatedly prove they are disabled enough to be exempt from work reporting requirements, a process in which administrative errors frequently kick eligible individuals off coverage. The process is dehumanizing, time-consuming and paperwork intensive.”
Upcoming MDA Advocacy Webinar:
To keep the community apprised of the evolving landscape, MDA is hosting a webinar on Tuesday, July 15 at 7pm ET to discuss the contents of the final bill, how it affects Medicaid and other health programs, and what the road forward looks like for the neuromuscular community. This program is free and open to the public – register for free today HERE.
Sign up to Advocate with MDA:
The bill may have passed, but there is still so much more for us to do. Join us at MDA.org/Advocacy to continue to defend access to care and services and to fight for robust neuromuscular disease research funding, independence, and community connection.
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 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. Learn more at MDA75.org.
