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FAQs About ACHD and Advocacy

On this page, learn about some of the most frequently asked questions we receive at the Adult Congenital Heart Association about ACHD and advocacy. Link to helpful resources for more information.

What key statistics should I share when advocating for adults with CHD?

Despite how common congenital heart defects are, many of those involved in making health policy and research decisions know very little about CHD and its practical and financial impact. Keep these points on hand when discussing ACHD:

  • Every 15 minutes a child is born in the U.S. with a heart defect or a structural abnormality, or every 1 in 100 births. This amounts to over 40,000 babies born annually with a CHD, the most common birth defect.
  • Heart defects include holes in the heart and misplaced, malformed, and missing valves, vessels, and heart chambers. Many adults with CHD have a combination of these defects.
  • Advances in diagnosis and treatment have increased life expectancy, and ACHA estimates nearly 2 million adults are living with CHD—more adults are living with CHD than children.
  • Compared to other adults, adults with CHDs have 3 to 4 times the rates of visits to emergency rooms, hospitals, and intensive care units.
  • Adults with CHD need specialized lifelong care because of the risk of long-term health problems like developmental delays, difficulty exercising, heart rhythm problems, heart failure, sudden cardiac arrest, stroke, and early cardiovascular death.
  • Only 10% of U.S. adults with CHD are receiving the specialized lifelong care they need. Reasons include lack of knowledge they need lifelong care and lack of access to specialized ACHD care.
  • There are only about 500 cardiologists board certified in ACHD care and only 53 ACHD accredited centers in the U.S. to serve the millions of adults coping with CHD.

Download our ACHD Fact Sheet.

Who are the ACHD congressional champions?

Congressional champions are elected officials in the U.S. House of Representatives and U.S. Senate who dedicate resources to understanding an issue and “champion” legislation and policies that are likely to positively influence people impacted by that issue. ACHD congressional champions introduce or co-sponsor key legislation like the Congenital Heart Futures Act and its reauthorizations, have their staffs meet with constituents on Capitol Hill and at home offices to better understand the impact of ACHD, and engage with ACHA and our collaborating organizations to ensure they understand the impact of proposed legislation.

Elected officials become ACHD champions for a variety of reasons, such as having a personal connection to ACHD, hearing the lived experiences of their constituents coping with CHD, or from having large CHD research and treatment centers in their districts. That’s why it’s very important that your representatives hear from you about how ACHD affects you and those around you. You can steward congressional champions all year round by sharing your story in person, through a letter, or by phone.

It's important to develop trusting relationships with legislators on both sides of the aisle and on both the House and Senate side. You can also develop champions in your state and local government and at key institutions that influence policies that impact adults with CHD. As sponsors of the Congenital Heart Futures Reauthorization Act of 2024, some of the current ACHD champions in Congress include:

House
Rep. Gus Bilirakis (R-FL-12) 
Rep. Adam Schiff (D-CA-30) 

Senate
Sen. Richard Durbin (D-IL)
Sen. Todd Young (R-IN)

Members of the Congressional Congenital Heart Caucus are also legislative champions. Caucuses are groups of elected officials from the U.S. House of Representatives who focus on advancing specific issues. Members of a caucus can come from any political party and allow for collaboration on issues that impact broad groups of people, like those affected by ACHD. The Congressional Congenital Heart Defects Caucus is co-chaired by Rep. Bilirakis and Rep. Schiff. The current members are:

  • Rep. Jake Auchincloss (D-MA-4)
  • Rep. Troy Balderson (R-OH-12)
  • Rep. Earl Blumenauer (D-OR-3)
  • Rep. Mike Bost (R-IL-12)
  • Rep. Vern Buchanan (R-FL-16)
  • Rep. Kathy Castor (D-FL-14)
  • Rep. Ben Cline (R-VA-6)
  • Rep. Andrew Garbarino (R-NY-2)
  • Rep. French Hill (R-AR-2)
  • Rep. Mark Pocan (D-WI-2)
  • Rep. Mike Quigley (D-IL-5)
  • Rep. Austin Scott (R-GA-8)
  • Rep. Darren Soto (D-FL-9)

Any representative can join the caucus. If your representative is on this list, please thank them for their service and ask for their support with ACHA’s current legislative priorities. If your representative is NOT on the list, reach out to share your story and ask them to join the caucus . Not sure what to do? We’ve got you covered.

Find my U.S. representative.
Find out how to share my story.
Learn more about our ACHD congressional champions.

What is the Congenital Heart Futures Act?

The Congenital Heart Futures Act is a provision to the Patient Protection and Affordable Care Act of 2010. This provision authorized federal funding for the National Institutes of Health (NIH) to invest in CHD research across the lifespan, and for the U.S. Centers for Disease Control (CDC) to create a National Congenital Heart Surveillance System. The bill was first introduced in 2009 as a result of an ACHA Lobby Day. Its reauthorization was introduced in 2017 and passed in 2018 as the Congenital Heart Futures Reauthorization Act of 2017, or CHFRA. In 2024, it was reintroduced as the Congenital Heart Futures Reauthorization Act of 2024 (H.R. 7189/S. 3757). Because of the efforts of ACHA and other collaborating CHD organizations, funding for the programs established under the Congenital Heart Futures Act has grown from $2 million annually at their inception in 2011 to $8.25 million in Fiscal Year2024.

Learn more about CHFRA 2024 and how you can help.

What role does the NIH play CHD research?

Research is critical to understanding the causes of CHD, preventing it, and improving treatment. The National Institutes of Health (NIH) is the nation’s premier organization in biomedical research, which conducts research from the bench to the bedside to understand the causes of CHD and to improve the care of people with CHD at all ages. These efforts address critical gaps and will contribute to a better future for people with CHD.

Visit the NIH to learn about CHD.

Does ACHA advocate for early screening for critical congenital heart disease (CCHD)?

ACHA supports early detection of CHD and programs that intervene early in the care and management of critical CHD. Critical CHDs, or CCHD, cause life-threatening symptoms in newborns that need attention within the first few hours, days, or months of birth. Early detection efforts save lives and improve outcomes. We commend our collaborating organizations for ensuring all newborns are screened for CCHDs. ACHA is committed to serving the lifelong needs of people impacted by CHD, from birth through adulthood, and we support organizations focused on these areas.

Learn more about CCHD screening.

Where can I learn more about the terms used by the U.S. Congress to discuss proposed laws?

The U.S. Senate has a free glossary that defines words like amendment, committee, veto, and more. The U.S. House of Representatives has a page explaining the legislative process' different steps and how a bill becomes a law. Another good resource is Congress.gov, which has videos about the legislative process.