Highlights from Virtual Advocacy Day 2022

Posted Friday, May 20, 2022

On Wednesday, May 4, ACHA and The Mended Hearts, Inc. teamed up to host a Virtual Advocacy Day. Passionate volunteers including patients, family members, and medical providers representing both organizations met with legislators from states across the country. In total, the event had over 260 registrants. Upon completion, 185 meetings took place, which included meetings with legislative staff members and 10 Members of Congress from 32 states.

Overall, many elected officials and legislative aides expressed genuine interest and concern in understanding the complex ACHD workforce challenges, which is why advocating and advocacy overall is so important. However, despite the overwhelmingly positive response we received, the critical need to continue advocating for those affected by CHD across the country remains. ACHA continues to work hard together with members of Congress, in a bipartisan fashion, to draft legislation so that we can keep this issue front and center so that patients have access to care across the country. We encourage all members of the ACHA community to continue supporting these efforts in the future.

All members of the CHD community can take action today by messaging their members of Congress and requesting they:

  • Support continued federal research funding for heart disease treatment and prevention, including CHD surveillance and awareness funding CHD research funding.
    • There are an estimated 2.4 million CHD patients in the United States. For over a decade, investments in the CDC's work have helped to improve understanding and care of CHD across the lifespan.
    • The Congenital Heart Futures Reauthorization Act, which was signed into law in 2018, expands the CDC's activities by collecting longitudinal data on CHD survivors across the lifespan and conducting awareness and outreach activities.
    • We are asking Congress to support full funding at the authorized level of $10 million for FY 2023 to support the CDC in working to address the lifelong needs of the growing CHD population and educating patients to help improve health outcomes and reduce medical costs.
    • For Senate offices: We urge other Senators to sign a letter of support for the $10 million funding request circulated by Senators Durbin and Young to Chairwoman Murray and Ranking Member Blunt of Health Appropriations Subcommittee.
  • Ensure the availability of and access to congenital heart disease care for life (Click here for a PDF outlining this issue).
    • Current estimates suggest there are approximately 2 million adults with congenital heart disease (ACHD) in the United States and is expected to grow at a rate of 5 percent per year.
    • More than 2/3 of the ACHD population have moderate to complex CHD. However, less than 10 percent of the ACHD patient population receives the recommended specialized ACHD care.
    • There are only an estimated 250 fellowship-trained ACHD cardiologists and just over 450 ACHD board-certified physicians.
    • Cardiology fellowships include three years of training after medical school, and ACHD fellowships are an added two years on top of the cardiology fellowship post-medical school.
    • Estimates suggest that at least 150 large regional centers would be required to provide adequate care for this population.
    • There are currently only 25 ACHD fellowship training programs in the U.S.
    • We urge Congress to make strategic federal investments to help attract new specialized providers into the field of ACHD and provide funding for additional training programs.
    • We propose the Congenital Heart Care for Life Act aimed at reducing barriers to entering the ACHD field for health professionals, supporting the development of ACHD fellowship training programs, and promoting ACHD-related continued education among general cardiology professionals.

Click links to find contact information for:

ACHD Clinic Directory