Why It Matters
The Muscular Dystrophy Association (MDA) is fighting to protect neuromuscular disease patients amid a healthcare funding crisis. Federal research cuts have decimated NIH grants, while Medicaid coverage changes threaten patient access to essential services. MDA needs Congress to restore research funding, preserve Medicaid coverage for disabled beneficiaries, and protect orphan drug incentives that drive treatment development. The organization’s lobbying strategy reflects a push for incremental legislative victories while navigating a hostile fiscal environment where competing priorities make comprehensive healthcare advocacy increasingly difficult.
By the Numbers
The Muscular Dystrophy Association Inc. spent $50,000 on in-house lobbying in the third quarter of 2025 continuing a decades-long advocacy presence in Washington. MDA has filed 103 total lobbying disclosures since 2008, investing $6.12 million through its internal team across that period.
The organization previously retained King & Spalding LLP, which handled MDA’s lobbying from 2008 to 2017, filing 36 disclosures worth $1.04 million. MDA now operates entirely through in-house staff, leveraging direct institutional knowledge and patient community connections.
The Agenda
The Muscular Dystrophy Association is lobbying on several core issues affecting the neuromuscular disease community. MDA focuses on sustained priorities that have defined its advocacy for over a decade rather than specific current legislation.
Historically, MDA has lobbied for robust federal funding for the National Institutes of Health and FDA. The organization has championed improvements to Medicare and Medicaid coverage, particularly for power mobility equipment. MDA has advocated for the Orphan Drug Tax Credit, supported the Achieving a Better Life Experience (ABLE) Act for disability savings accounts, and pushed for air travel accessibility through the Air Carrier Access Amendments Act.
Currently, MDA’s advocacy aligns with broader congressional activity on healthcare funding and rare disease research. Senator Susan Collins is championing Duchenne muscular dystrophy research funding, while Representative Jason Crow has led bipartisan efforts for expanded ALS research funding. Pending legislation including the Bipartisan Health Care Act and the Expanding Remote Monitoring Access Act address patient access issues that align with MDA’s mission.
Broader Context
Congress is navigating significant disruptions to federal health research funding. The Trump administration terminated approximately 2,300 NIH grants totaling nearly $3.8 billion, with neuroscience-related grants falling 37 percent. While a federal court initially halted these cuts, the Supreme Court later allowed the administration to proceed.
Medicaid coverage—critical for patients with neuromuscular diseases—faces retrenchment. Republicans proposed deeper Medicaid cuts affecting hospital funding and patient coverage, alongside new work requirements threatening access for working-age disabled individuals.
On a positive front, the FDA has approved over 30 cell and gene therapies as of 2025, with 30-50 additional approvals anticipated. This regulatory momentum creates opportunities for treatment breakthroughs.
Between The Lines
MDA’s Q3 2025 lobbying occurs amid significant congressional activity. Senator Collins secured $9 million for CDC muscular dystrophy activities, while Representative Crow led bipartisan advocacy for ALS research funding.
Several bills could directly benefit MDA’s constituency. The Bipartisan Health Care Act expands Medicaid coverage for home-based services, while the Expanding Remote Monitoring Access Act improves Medicare coverage for chronic conditions. The EXPERT Act would formalize FDA meetings with rare disease experts.
Competitive Landscape
MDA operates within a crowded advocacy ecosystem. Sarepta Therapeutics lobbies on overlapping issues including gene therapy innovation and patient access to Duchenne muscular dystrophy treatments. Cure SMA pursues remarkably similar legislative strategies, including air travel accessibility, research funding, and disability rights advocacy.
This overlapping landscape creates multiple congressional pressure points on rare disease issues, potentially amplifying impact while fragmenting lobbying resources across similar priorities.
The Bottom Line
The Muscular Dystrophy Association Inc.’s efforts focus on longstanding priorities: federal research funding, healthcare coverage expansion, and orphan drug development incentives. The organization operates within a challenging environment marked by significant NIH grant terminations and Medicaid coverage pressures. While key members continue championing neuromuscular disease research, broader fiscal constraints limit MDA’s ability to secure major legislative victories.
Access the Legis1 platform for comprehensive political news, data, and insights.
Spot something wrong? Report an issue with this article