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Congenital Heart Futures Reauthorization Act of 2024

In 2024, ACHA’s top legislative priority is advocating for passage of the Congenital Heart Futures Reauthorization Act of 2024 (H.R. 7189/S. 3757).

In 2024, ACHA’s top legislative priority is advocating for passage of the Congenital Heart Futures Reauthorization Act of 2024 (H.R. 7189/S. 3757). This legislation, also known as CHFRA, is a critical source of federal funding for CHD and ACHD research. On this page, you will learn what CHFRA does, why passage is important, and what you can do to help get the law passed. Bookmark this page for frequent updates.

CHFRA brings together ACHA’s core policy and legislative priorities of increasing research funding, improving access to care, growing awareness, and ensuring representation of the patient voice. When fully funded, CHFRA represents a $10 million commitment by the federal government to fuel innovation in research, data collection, and public awareness of ACHD.

CHFRA was introduced in February 2024 by our community’s congressional champions. It must be passed by the end of the current congressional term to ensure ongoing funding for ACHD research and activities. ACHA has been working closely with our partners in Congress and with fellow CHD organizations to ensure the language in the bill accurately represents the needs of our ACHD community.

Understanding CHFRA’s Impact on People with Congenital Heart Disease

The Congenital Heart Futures Reauthorization Act of 2024 was introduced in February 2024 by Senators Dick Durbin (D-IL) and Todd Young (R-IN) in the U.S. Senate and Representatives Gus Bilirakis (R-FL) and Adam Schiff (D-CA) in the U.S. House of Representatives.

CHFRA is a reauthorization bill, meaning legislation that Congress enacts periodically to make changes to existing laws and to keep funding going. CHFRA reauthorizes the Congenital Heart Futures Act, originally passed as a provision under the Patient Protection and Affordable Care Act of 2010. The original provision allowed the federal government to fund CHD programs through Fiscal Year 2016 (Sept. 30, 2016). ACHA successfully advocated for the Congenital Heart Futures Reauthorization Act of 2017 to fund CHD programs through the end of Fiscal Year 2024. Now it’s time to come together and ensure these vital programs continue.

The Congenital Heart Futures Reauthorization Act of 2024 (H.R. 7189/S. 3757) would:

  • Authorize up to $10 million in federal funding for CHD programs at the U.S. Centers for Disease Control and Prevention (CDC), consistent with the previous reauthorization
  • Require the CDC to convene a workshop of experts on ACHD care from federal agencies, as well as patient and physician groups, with the goals of:
    • Identifying research needs and opportunities related to the lifelong needs of people with CHD, including their long-term health outcomes, quality of life, mental health, and use of the healthcare system
    • Developing recommendations to address the shortage of providers with expertise in ACHD, including strategies to expand fellowship training programs and establish more regional ACHD care centers
    • Fostering collaboration among government agencies, healthcare provider, researchers, and patient advocacy organizations to improve the health and well-being of adults with CHD

When reauthorized, CHFRA would also support the ongoing Congenital Heart Futures goals to:

  • Allow the National Institutes of Health (NIH) to invest in CHD research across the lifespan (since 2010)
  • Direct the CDC to conduct studies and surveillance to enhance understanding of CHD across the lifespan, focusing on incidence, causation, health care use, demographics, and care practices, while also potentially examining health outcomes and disparities (since 2017)
  • Authorize the CDC to implement an education and awareness campaign directed at people with CHD and their families (since 2017)
  • Require NIH to issue a report to Congress on their CHD-related research (since 2017)

The 2023 bill has a broad ability to influence the research, treatment, care, and support of all people living with congenital heart disease. In addition to supporting life-changing research, the new language requesting support to assess the shortage of trained ACHD providers ensures that as more and more children survive into adulthood with a CHD, they have access to the specialized heart care they need to live long, healthy, and productive lives.

Click here for our CHFRA fact sheet

History of the Congenital Heart Futures Act

The Congenital Heart Futures Act was the culmination of years of ACHA advocacy to bring greater resources and attention to the needs of adults with CHD.

Three years before its passage, ACHA began discussing what would ultimately become the Congenital Heart Futures Act. Nearly 80 ACHA advocates went to Capitol Hill to educate lawmakers and their staff members about CHDs. In 2007, we held a second Lobby Day and formed the National Congenital Heart Coalition (NCHC) with the Children’s Heart Foundation and the Congenital Heart Information Network to begin laying the groundwork for a legislative push. The following year, we expanded our efforts with 50 in-district visits and welcomed more collaborator organizations to the NCHC. Together, our organizations drafted the language for the final bill. In 2009, ACHA invited all members of NCHC to the first National Congenital Heart Lobby Day to push for the introduction of the Congenital Heart Futures Act.

The legislation was introduced in 2009 in the Senate by Senators Richard Durbin (D-IL) and Thad Cochran (R-MS) and in the House by Representatives Gus Bilirakis (R-FL-9) and Zachary Space (D-OH-18). It passed as a provision under the Patient Protection and Affordable Care Act, authorizing funding of up to $4 million through Fiscal Year 2016 for NIH to invest in CHD research and for the CDC to establish a National Congenital Heart Surveillance System. In 2010, the Congenital Heart Futures Act became law, bringing additional federal government resources to bear on CHD research and surveillance.

The Congenital Heart Futures Act is supported by federal discretionary spending. This means each year the congressional committees that oversee federal budgeting—the appropriations committees—must determine how much of that year’s federal budget should be allocated to programs established under the law. Since its passage, ACHA has advocated annually for the maximum funding allowed under the law. In 2010, ACHA led the NCHC and 110 advocates in a National Congenital Heart Lobby Day to request full funding for the new legislation. The following year, we successfully advocated that Congress direct $2 million of the funding toward the public health activities called for in the Congenital Heart Futures Act.

With the authorization for funding expiring at the end of FY 2016, ACHA worked tirelessly with our colleagues and advocates to support the Congenital Heart Futures Reauthorization Act of 2017, which funded CHD research through federal Fiscal Year 2024. This legislation was introduced in 2017 by Senators Richard Durbin (D-PA) and Robert Casey (D-PA) in the Senate and by Representatives Gus Bilirakis (R-FL-12) and Adam Schiff (D-CA-28) in the House. In a significant win, the new legislation increased the maximum level of CHD funding for the CDC to $10 million annually, up from the previous $4 million. It also authorized CDC to implement an awareness campaign for people with CHD and required NIH to issue a public report to Congress on CHD-related research.

ACHA continues to advocate annually for the federal government to support CHD programs at the full level of $10 million. In FY 2024, CHD programs at the CDC received $8.25 million in annual funding.

Our ACHD Congressional Champions

Our CHD congressional champions have been key partners and leaders in supporting ACHA’s priorities on Capitol Hill. They became ACHD champions for various reasons, some because of personal connections to CHD and some through work as legislators in their community.

As advocates, developing and maintaining trusting relationships with these legislators, their health staff, and others who influence legislation and policies for adults with congenital heart disease is crucial. These elected officials value hearing from you—primarily if they represent your interests—and appreciate being thanked for their support and hard work. Here are some of our longstanding congressional champions:

House of Representatives

  • Rep. Gus Bilirakis (R-FL-12) is co-chair of the Congressional Congenital Heart Defect Caucus, was an original co-sponsor of both the Congenital Heart Futures Act and the Congenital Heart Futures Act of 2017, and currently sponsors the Congenital Heart Futures Reauthorization Act of 2024 in the 118th Congress. Rep. Bilirakis and his father, Michael, a retired House representative, have both supported federal health agencies and research. The latter played an instrumental role in establishing the CDC’s National Center of Birth Defects and Developmental Disabilities (NCBDDD), which currently manages the CDC’s CHD programs.
  • Rep. Adam Schiff (D-CA-30) is co-chair of the Congressional Congenital Heart Defect Caucus, was an original co-sponsor of the Congenital Heart Futures Act of 2017, and currently sponsors the Congenital Heart Futures Reauthorization Act of 2024 in the 118th Congress. The Children’s Hospital of Los Angeles resides within Rep. Schiff’s district.

Senate

  • Sen. Richard (Dick) Durbin (D-IL) sadly lost his adult daughter because of complications of CHD. Senator Durbin was an original co-sponsor of both the Congenital Heart Futures Act and the Congenital Heart Futures Act of 2017, and currently sponsors the Congenital Heart Futures Reauthorization Act of 2024 in the 118th Congress. In recent appropriations cycles, Sen. Durbin partnered with Sen. Young in asking fellow senators in a Dear Colleague letter to fully fund the CDC’s CHD programs at $10 million.
  • Sen. Todd Young (R-IN) was a cosponsor for the Congenital Heart Futures Reauthorization Act of 2017. He has signed as a co-lead to a Dear Colleague letter in recent years with Sen. Durbin, asking fellow senators to fully fund the CDC’s CHD programs at $10 million annually.

Learn about the role of congressional champions.

How You Can Support Passage of CHFRA

There are many ways you can help support the passage of the Congenital Heart Futures Reauthorization Act of 2024 (H.R. 7189/S. 3757). One important strategy is to let your congressional representatives know you support CHFRA. Ask them to co-sponsor CHFRA and to vote in its favor when the bill comes to the floor. If your representative already supports CHFRA, thank them for their impact on the lives of people with CHD.

Here are a few strategies you can use to ask your elected officials to support CHFRA. Choose the one(s) that make the most sense for you.

  1. Send an email. Use our convenient, pre-drafted letter to email your congressmember in the House of Representatives and your state’s two senators. You can customize your message to include how CHD has impacted you and your family. Thank your elected officials who’ve already cosponsored CHFRA.
  2. Make a call. By calling the Washington, D.C., offices for your representative and senators, you can weigh in and encourage them to become CHFRA cosponsors. Be polite to any staff members or congressional interns who answer the phone, and be ready to provide some quick facts by keeping these ACHD facts on hand. Thank the staff member and follow up with the office by using our pre-drafted letter or sending an email through the congressmember’s website.
  3. Get involved locally. Email us to let us know you’re interested in meeting with your local ACHA representative. We can connect you with more ways to get your community engaged in supporting CHFRA.
  4. Tell ACHA what you did. Reach out to let us know what you did and how we can support and follow up on your efforts. We’re available 24/7 via email.

ACHA regularly visits Capitol Hill, as well as schedules in-district and virtual visits with our congressional champions. Reach out to advocacy@achaheart.org to express interest and learn more about these specific activities.

Updated 5/22/2024