MDA’s 2024 Advocacy Agenda

As we embark on a new year, MDA’s commitment to changing public policy and truly empowering the neuromuscular community remains the same. MDA advocates accomplished a lot last year,  and the advocacy team continues to work towards reaching new milestones and achieving vital goals in 2024.

We are excited to share a sneak peek at the advocacy team’s agenda for the next 12 months.

Access

MDA is committed to ensuring the neuromuscular community has access to healthcare and essential therapies, from the moment of receiving a diagnosis and as needs change throughout life.

In 2024, our efforts to help maintain and increase access to care include:

• Ensuring more newborns are screened for conditions such as spinal muscular atrophy (SMA), Pompe disease, and Duchenne muscular dystrophy. Currently, all 50 states screen for SMA, 43 states screen for Pompe, and we expect a few states to start screening for Duchenne in 2024.

In addition, we will continue to advocate for Duchenne to be added to the federal Recommended Uniform Screening Panel (RUSP) and we expect to make significant progress on this long-term goal.

• Working with Medicare to formally cover standing wheelchair systems.
• Ensuring the neuromuscular community can access the Right Care at the Right Place. This includes:
  • Making sure telehealth continues to be accessible for those who utilize it for essential medical care.
  • Increasing access to genetic medicine and counseling.
  • Improving access and care for the ALS community via the ALS Better Care Act.

Accelerating Therapeutic Development

We are committed to working with key stakeholders, including Congress and the US Food and Drug Administration (FDA), to help accelerate development of life-changing therapies.

This includes:

• Continuing to ensure therapies are being developed for the neuromuscular community by protecting the Orphan Drug Act.
• Ensuring the patient experience is a valuable consideration in clinical trials and FDA drug approvals.
• Reauthorizing the important Rare Pediatric Disease Priority Review Voucher Program, which helps with development of drugs and therapies for pediatric rare diseases.
• Improving diversity in clinical trials, which will result is better drugs and therapies for everyone in the NMD community.

Empowerment and Independence

In 2024, MDA will continue to ensure those in the neuromuscular community can live empowering and independent lives.

This includes:

• Urging Congress to pass a transformative Federal Aviation Act (FAA) reauthorization bill that includes major air travel reforms for those living with a disability. In addition, we will continue to work with the Department of Transportation (DOT) to improve the flying experience for the disability community.
• Ensuring federal benefit programs are modernized, including the Supplemental Security Income (SSI) program.
• Improving access to educational opportunities.

Make Sure Your Voice is Heard in the 2024 Election

Are you prepared to vote in the 2024 election? If not, MDA has you covered. This year, we are committed to educating MDA advocates on the voting process, ensuring that they understand how to access their polling places, and ensuring that their voices are counted at the polls. Stay tuned for valuable resources, tips, and some fun to come this election season.

MDA Hill Day

Save the date! On September 8-10^th, 2024, 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 2024, 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!