President Joe Biden on Nov. 21 signed into law a bipartisan, bicameral bill supported by U.S. Sen. Todd Young (R-IN) that will extend funding at the Centers for Disease Control and Prevention (CDC) to improve childhood survival rates, prevent premature death and disability, and increase quality of life for the 2.5 million Americans living with congenital heart disease (CHD).
“I’m pleased to see this important bill become law,” Sen. Young said. “This reauthorization will continue to encourage research and data collection that will help improve the care offered to those with CHD. This effort puts us one step closer to gaining a better understanding of congenital heart defects in babies born with CHD and survivors living with this disease.”
Biden signed into law the Congenital Heart Futures Reauthorization Act of 2024, H.R. 7189, which U.S. Reps. Gus Bilirakis (R-FL) and Darren Soto (D-FL) introduced on Feb. 1. Sen. Young and U.S. Sen. Dick Durbin (D-IL) on Feb. 7 introduced the same-named S. 3757 in their chamber.
The new law will reauthorize the CDC’s surveillance systems to track the epidemiology of children born with CHD and conduct research, and reauthorize the CDC’s efforts to gather longitudinal patient data of CHD patients as they age, including information on demographic factors, health care utilization and disparities, and long-term outcomes for those with CHD, according to a bill summary provided by the lawmakers.
Additionally, it will reauthorize the CDC’s awareness-building activities to enhance education among the CHD patient and medical communities, and direct the U.S. Secretary of Health and Human Services (HHS) to convene a workshop of subject matter experts to assess and report upon research gaps and workforce capacity for adult CHD patients, the summary says.
“Thanks to President Biden, Sen. Young, and colleagues in the House, we worked in a bipartisan way to get this done,” said Sen. Durbin. “Now that it is signed into law, we can improve research, data collection, awareness, and workforce training so we can establish a standard of care and bring hope for the millions of Americans born with CHD.”
The bill had garnered support from the Adult Congenital Heart Association, Conquering CHD, the American Heart Association, the American Academy of Pediatrics, the Children’s Hospital Association, the American College of Cardiology, the Society for Thoracic Surgeons, the National Down Syndrome Society, the Children’s Heart Foundation, and Mended Little Hearts.