Press Releases

WASHINGTON, D.C. – The Congenital Heart Futures Reauthorization Act of 2024 authored by Representatives Earl L. "Buddy" Carter (R-GA), Darren Soto (D-FL), Gus Bilirakis (R-GA), and Adam Schiff (D-CA) in the House, along with Senators Dick Durbin (D-IL) and Todd Young (R-IN) in the Senate, has been signed into law. 

This bipartisan legislation reauthorizes funding for critical research and awareness efforts at the Department of Health and Human Services (HHS) on the causes, prevention, and development of better treatments for patients suffering with Congenital Heart Disease (CHD). Despite remarkable medical advancements that have helped patients with CHD improve their quality and length of life, nearly 40,000 babies are born with this condition each year. It is the most common birth defect and remains the number one cause of birth defect-related deaths in America. As CHD patient life expectancy has increased, there are now more adults than children living with CHD in the United States, with approximately 2 million adults living with these conditions. The lack of specialized routine care leaves this patient population susceptible to costly health care episodes or detrimental health impacts. 

The National Congenital Heart Disease Research, Surveillance, and Awareness Program is desperately needed to further the understanding of this condition and investigate the impact congenital heart defects have throughout patients' lifespans, with the ultimate goal of developing lifelong, specialized care for patients with congenital heart defects. The Congenital Heart Futures Reauthorization Act will extend this program through Fiscal Year 2029. 

“During my career as a pharmacist, I’ve seen nothing short of miracles as a result of research and development. For the two million patients suffering with Congenital Heart Disease in America, relief – in the form of a cure or treatment – can’t come soon enough. I’m proud to sponsor this bipartisan bill, which is now law, to help get CHD patients the help they deserve and will continue to promote policies that lead to better health care outcomes for all Americans,” said Rep. Carter.

"As a co-founder of the Congenital Heart Caucus, I’ve become familiar with the struggles patients with congenital heart disease and their families face. This new law brings us one step closer to enhancing better treatment options and improving outcomes for all patients suffering with this condition. We’ve seen that this program yields positive results and I look forward to it continuing to help future generations live longer, healthier lives," said Congressman Bilirakis.

“Today’s signing of the Congenital Heart Futures Reauthorization Act of 2024 demonstrates the importance of patient advocacy and bipartisan problem-solving. Thanks to Representative Bilirakis and his colleagues, ACHD patients and cardiologists were truly heard throughout this process,” said Mark Roeder, President and CEO of the Adult Congenital Heart Association. “I’m grateful for the opportunity to witness this historic signing as our government moves to address the need for a larger care workforce for our growing population of almost two million adults with CHD across the country.”

“Identifying congenital heart defects as early as possible and ensuring children receive the very best care is critical to saving lives and improving outcomes for children,” said Leah Evangelista, Chief Public Affairs and Brand Officer of the Children’s Hospital Association.

Conquering CHD, Mending Little Hearts, and the Children’s Heart Foundation are all also strong supporters of this priority legislation.