Hoosier State Today

U.S. Senators Todd Young (R-Ind.) and Dick Durbin (D-Ill.) have announced the congressional passage of their Congenital Heart Futures Reauthorization Act, which now awaits the President's signature to become law. This legislation aims to extend funding for public health initiatives at the Centers for Disease Control and Prevention (CDC) focused on improving survival rates, preventing premature death and disability, and enhancing the quality of life for approximately 2.5 million Americans living with congenital heart disease (CHD).

The bipartisan effort follows previous work by Senators Young and Durbin. In May, their bill passed out of the Senate Committee on Health, Education, Labor, and Pensions (HELP) with a bipartisan vote of 19-2. On Monday, the House of Representatives unanimously approved companion legislation.

“Gaining a better understanding of congenital heart defects is critical to babies born with CHD and the millions of survivors living with this disease," said Senator Young. "I am encouraged by the progress in recent years, particularly for children with heart defects. Our bill will improve research and data collection to better increase the quality of care offered to those born with CHD. I’m pleased to see this important piece of legislation pass Congress and urge the President to sign it into law.”

Senator Durbin added: “Every 15 minutes in America, a baby is born with a heart defect. It is the most common and most fatal birth defect. My family knows this issue well. I can tell you personally there is no more hopeless feeling in the world than being told that your beautiful new baby has a serious medical complication—especially one that requires heart surgery."

Durbin continued: "Thankfully, we have seen an incredible improvement in screening and surgeries for children born with heart defects—saving thousands of lives and increasing survival into adulthood. 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.”

In 2018, Senators Young and Durbin led efforts to reauthorize CDC’s CHD program while expanding its scope to collect epidemiological and longitudinal data on CHD patients throughout their lives. The 2018 reauthorization also promoted awareness efforts since many adults living with CHD are unaware they need specialized long-term care; fewer than 10 percent currently receive recommended care.

The Congenital Heart Futures Reauthorization Act aims to continue CDC’s surveillance systems tracking epidemiology among children born with CHD while conducting related research; gather longitudinal patient data including demographic factors; enhance education within both patient communities and medical professionals about CHD; and direct Health Secretary HHS convene experts assessing gaps in research/workforce capacity for adult patients.

The Act has garnered support from several organizations including American Heart Association; American Academy Pediatrics; Children’s Hospital Association; Conquering CHD; Adult Congenital Heart Association; American College Cardiology Society Thoracic Surgeons Children’s Heart Foundation Mended Little Hearts.

###