The U.S. Senate on Sept. 25 passed a bipartisan bill offered by U.S. Sen. Todd Young (R-IN) that would extend funding for public health efforts 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).
The Congenital Heart Futures Reauthorization Act of 2024, H.R. 7189, introduced in February by U.S. Reps. Gus Bilirakis (R-FL) and Darren Soto (D-FL), now heads to President Joe Biden’s desk to be signed into law.
“I’m pleased to see this important piece of legislation pass Congress and urge the president to sign it into law,” said Sen. Young, who cosponsored the Senate’s identical version, S. 3757, with sponsor U.S. Sen. Dick Durbin (D-IL) in February.
Sen. Durbin noted that every 15 minutes in America, a baby is born with a heart defect. “With passage of our bill, we will improve research, data collection, awareness, and workforce training so we can establish a standard of care for the millions of Americans born with CHD,” he said.
The bill will reauthorize the CDC’s surveillance systems to track the epidemiology of children born with CHD and conduct research. It will also reauthorize the CDC’s efforts to gather longitudinal patient data of CHD patients as they age, including information on demographic factors, healthcare utilization and disparities, and long-term outcomes for those with CHD, according to a bill summary provided by the lawmakers.
Additionally, the bill 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 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.
“Gaining a better understanding of congenital heart defects is critical to babies born with CHD and the millions of survivors living with this disease,” Sen. Young said. “I am encouraged by the progress in recent years, particularly for children with heart defects.”