Championing for Change: MDA’s 2025 Advocacy Agenda

With a new Congress and Administration in office, it’s safe to say that 2025 is going be a year full of change. But what remains consistent is MDA’s commitment to advocating for public policy that will empower the neuromuscular community.

As we begin a new year, check out MDA’s Advocacy Agenda!

Unfinished 2024 business

MDA 2024 Hill Day

Unfortunately, at the end of 2024, Congress had not yet passed a few of MDA’s priorities and proposed legislation. However, we are not giving up and will continue to work to get the following bills and initiatives across the finish line.

• The Accelerating Kids’ Access to Care Act – The bill would make it easier for children living with neuromuscular diseases to access out-of-state care without unnecessary delays.
• Rare Pediatric Disease Priority Review Voucher Program reauthorization – Extending this program will encourage the development of life-changing treatments for rare pediatric diseases, including neuromuscular diseases.
• Extending telehealth flexibilities – Changes that made telehealth easier to access are set to expire at the end of March and must be extended further.
• Prescription drug price reforms– MDA will continue to advocate for positive improvements and reforms to how Pharmacy Benefit Managers affect prescription drug prices and access.

Protecting the community’s access to healthcare

Unfortunately, we expect to see reforms proposed to the nation’s healthcare system that could have negative effects on the neuromuscular community. However, MDA and its advocates are committed to defending key programs.

• Protecting Medicaid from harmful cuts – We know many living with disabilities, including those with neuromuscular conditions, rely on Medicaid coverage. MDA will continue to fight and protect this vital program.
• Protect Affordable Care Act tax credits – Many Americans have benefited from increased premium tax credits to afford coverage via the Affordable Care Act marketplaces. MDA will work to ensure these tax credits remain in place.
• Pre-existing condition protections – Key protections for accessing affordable, accessible health insurance must be protected.

Increasing access to newborn screening

In 2025, MDA will continue to advocate for increased access to newborn screening, including:

• Working with Congress to reauthorize the Federal newborn screening program.
• Adding Duchenne Muscular Dystrophy (DMD) to the Recommended Uniform Screening Panel.
• Continuing to add Pompe disease and DMD to state programs.

Advocating for empowering policies for those with disabilities

MDA and its advocates will work with Congress and government agencies to pass policies that will truly empower the neuromuscular community including:

• Protecting federal benefit programs, including Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI).
• Strengthening access to and awareness of ABLE accounts.
• Continuing to improve air travel for the disability community by ensuring full implementation of the 2024 FAA Reauthorization Act and new Department of Transportation regulations.
• Addressing the economic and support needs of unpaid family caregivers.

Expanding access to treatments and care:

While protecting current access to care remains essential, MDA and our partners will also be looking for ways to improve treatment development and access to care in a variety of additional ways, including:

• Preparing for the reauthorization of the ACT for ALS and FDA user fee agreements, both due to be reauthorized in the ensuing two years.
• Expanding access to genetic testing and counseling, multi-disciplinary care, wheelchair repair, gene therapies, home and community-based services, and more.

Save the Date: MDA on the Hill 2025

On November 2-4, 2025, MDA advocates will return to Washington, D.C. and urge their lawmakers to support policies that will empower the neuromuscular community. Together, we will ensure Capitol Hill hears our voices loud and clear! MDA will share more details soon.

MDA and its advocates have an ambitious agenda for 2025, and we need your help! Advocates speaking up is crucial to our success. Sign up today and make sure key decision-makers hear your voice!