Celebrating Our 2023 Advocacy Accomplishments
By Mark Fisher | Wednesday, December 20, 2023
From major legislative and regulatory progress on crucial issues, to our in-person Hill Day in Washington, D.C., 2023 has truly been a landmark year for MDA advocates. Because of your voice, key decision makers enacted important public policies that will truly empower the neuromuscular community.
Together, we should be proud of our many accomplishments this year. Let’s take a look back.
Access to Care
In 2023, MDA’s advocates worked tirelessly to increase access to medical care and procedures. Because of your help, we achieved the following victories:
- Multiple states added both Pompe disease or spinal muscular atrophy (SMA) to the list it screens all newborns for after birth. Now, at least 43 states screen for Pompe and 48 for SMA.
- MDA saw major progress in our effort to have states screen newborns for Duchenne muscular dystrophy (DMD). This summer, a key committee, the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children (ACHNDC), voted to move the nomination of Duchenne muscular dystrophy (DMD) for the Recommended Uniform Screening Panel (RUSP) onto the next stage of review. This is a key step in achieving our goal of screening all babies for DMD after birth. We expect more progress in 2024. Stay tuned.
- This year, MDA celebrated Medicare’s decision to formally cover wheelchair seat elevating systems for many types of power wheelchairs. Advocates from the across the country sent in comments urging the Centers for Medicare and Medicaid Services (CMS) to cover this vital equipment.
- Together, with our coalition partners, MDA successfully fought off attempts to both cut funding and to add harmful work requirements to the Medicaid program. This would have been detrimental to the millions who rely on this program.
Accelerating Therapeutic Development
Together, in 2023, we successfully pushed therapeutic development for neuromuscular diseases in the right direction:
- This year was a record year in new drug approvals for neuromuscular diseases: the Food and Drug Administration approved eight new therapies for neuromuscular diseases, including the very first gene therapy for a muscular dystrophy.
- With MDA’s encouragement, the FDA launched several new programs that should benefit the community, including the Rare Disease Endpoint Advancement program and the Support for Clinical Trials Advancing Rare Disease Therapeutics (START). Many of these programs come from MDA’s legislative efforts in 2022 as we reauthorized the Prescription Drug User Fee Act (PDUFA)
- FDA leaders endorsed flexible regulatory mechanisms not used before, including the more widespread use of the Accelerated Approval pathway for gene therapies for ultra-rare diseases.
Empowerment and Independence
2023 was a vital year to improve air travel for people living with disabilities. MDA’s advocates were relentless in their advocacy and, together, we saw results.
- The S. House passed its version of Federal Aviation Act (FAA) reauthorization. This bill includes the most transformative air travel accessibility reforms since the 1980s! We will continue our work on this issue and continue to urge the Senate to follow the House and pass a strong air travel bill in 2024.
- In addition, after years of hard work and hundreds of MDA advocates making their voices heard, the Department of Transportation (DOT) finally released a regulation to mandate accessible lavatories on single-aisle airplanes, the most common type of airplane in the country!
- Finally, in November, MDA announced a partnership with the Transportation Security Administration (TSA) to establish training for TSA officers specifically focused on interactions with travelers living with neuromuscular disease and other disabilities affecting their mobility. This training leverages the experiences of MDA advocates to educate officers so that traveler safety, comfort, and dignity remain intact. Educational training will include an MDA video showing the common indignities of air travel for people with disabilities who depend on power wheelchairs and other mobility devices.
In addition to improving air travel, MDA celebrated the introduction of the SSI Penalty Elimination Act, which would increase assets limits for Supplemental Security Income to $10,000 for individuals and $20,000 for couples while factoring in inflation with any changes to future limits.
A Return to D.C.: 2023 Hill Day
It’s been over three years since MDA’s grassroots advocates traveled to Washington, D.C. to meet in person with their lawmakers. Even though the pandemic temporarily brought Capitol Hill visits to a halt, our advocates didn’t miss a beat when they returned to the nation’s capital in September.
Here are the highlights of MDA on the Hill:
- 31 advocates attended.
- 11 states represented.
- 31 meetings with key lawmakers.
MDA advocates were strategic and met with Representatives and Senators who are in leadership positions or serve on key committees that will make the final decisions about air travel reforms this year.
Read more about this impactful day and learn how you can get involved!
We have accomplished a lot together this year and we couldn’t have done this without you! If you are not already an MDA grassroots advocate, join us today!
Next Steps and Useful Resources
- Add your voice to MDA’s Grassroots Advocacy Network. Sign up at MDA.org/advocacy.
- Listen to a conversation with advocates pushing for advances in accessible air travel and transportation policies at MDAQuest.org/podcast/ accessibility-DOT.
- Stay up-to-date on Quest content! Subscribe to Quest Magazine and Newsletter.
Disclaimer: No content on this site should ever be used as a substitute for direct medical advice from your doctor or other qualified clinician.