Adult Congenital Heart Association Advocates on Capitol Hill

Posted Thursday, Mar 07, 2024

ACHA leadership requests support for the Congenital Heart Futures Reauthorization Act of 2024

The Adult Congenital Heart Association’s board of directors and staff closed out Heart Month by visiting Capitol Hill February 29 to ask lawmakers to sign on as co-sponsors to the Congenital Heart Futures Reauthorization Act of 2024. This critical legislation ensures continued funding of up to $10 million annually through federal fiscal year 2029 to advance congenital heart disease (CHD) research, surveillance, and awareness programs.

Advocates from all U.S. regions gathered in Washington, DC, to persuade their elected officials to co-sponsor H.R. 7189/S. 3757, the bill also known as CHFRA. Co-sponsored in the House by Representatives Gus Bilirakis (R-FL-12) and Adam Schiff (D-CA-30) and in the Senate by Senators Dick Durbin (D-IL) and Todd Young (R-IN), this bipartisan legislation includes new language on the Senate side that directs the U.S. Centers for Disease Control and Prevention to convene an interagency group of CHD experts to identify ways to address the workforce shortages impacting adults with CHD. That language was drafted by ACHA in collaboration with The Children’s Heart Foundation, Conquering CHD, and Mended Little Hearts, Inc. All four organizations support the Senate version of the bill.

Act now to ask your elected officials to support CHFRA.

“Our country is not prepared for the wave of CHD patients we anticipate requiring adult CHD medical care in the coming years,” said ACHA's President and CEO Mark Roeder. “Despite nearly 2 million adults living with CHD in the U.S. and growing at a rate of nearly 5 percent a year, we have only 509 ACHD board-certified physicians to care for them. This proposal is an important step forward to ensure the CHD community receives adequate health care.”

ACHA board and staff met with elected officials from Pennsylvania, Texas, California, Oklahoma, Florida, Kansas, Louisiana, Connecticut, North Carolina, and Minnesota, among others. A highlight was the final meeting of the day with Senator Durbin of Illinois, the original sponsor of the Congenital Heart Futures Act and a passionate advocate for CHD research after the premature death of his adult daughter from CHD.

In addition to CHFRA, advocates educated elected officials about two other priority issues for ACHA in the coming year: continuing robust funding for the National Heart, Lung, and Blood Institute (NHLBI) and including CHD as a topic area for the Peer-Reviewed Medical Research Program (PRMRP) that is part of the Department of Defense’s Congressionally Directed Medical Research Program (CDRMP).

To learn more about CHFRA, including what it would fund and how you can support passage, watch our recent webinar and review our information sheet. Keep updated by signing up for Action Alerts.


Contact Congress Today

Demand better research, surveillance, and awareness of ACHD by calling on Congress to act now on the Congenital Heart Futures Reauthorization Act of 2024. Contact your elected officials today.