Indy Standard

U.S. Senators Todd Young (R-Ind.) and Dick Durbin (D-Ill.) have commended 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 the 2.5 million Americans living with congenital heart disease (CHD).

The bipartisan effort is an extension of previous work by Senators Young and Durbin. In May, their Congenital Heart Futures Reauthorization Act passed out of the Senate Committee on Health, Education, Labor, and Pensions (HELP) with a strong bipartisan vote of 19-2. The House of Representatives unanimously passed companion legislation on Monday.

“Gaining a better understanding of congenital heart defects is critical to babies born with CHD and the millions of survivors living with this disease. 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,” said Senator Young.

“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,” said Senator Durbin. “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 and expand its scope to gather epidemiological and longitudinal data on CHD patients across their lifespan in order to improve health outcomes and reduce medical costs. The 2018 reauthorization also promoted awareness efforts since many adults living with CHD are unaware they require specialized long-term care; fewer than 10 percent currently receive recommended care.

The Congenital Heart Futures Reauthorization Act seeks to reauthorize CDC’s surveillance systems for tracking epidemiology among children born with CHD; continue gathering longitudinal patient data as they age; enhance education within both patient communities and medical fields; and direct the Secretary of Health and Human Services (HHS) to convene expert workshops assessing research gaps.

This act has garnered support from organizations including the American Heart Association, American Academy of Pediatrics, Children’s Hospital Association, Conquering CHD, Adult Congenital Heart Association, American College of Cardiology, Society for Thoracic Surgeons, Children’s Heart Foundation, and Mended Little Hearts.