Hoosier State Today

The Congenital Heart Futures Reauthorization Act, spearheaded by U.S. Senators Todd Young and Dick Durbin, has been signed into law. This legislation extends funding for public health initiatives at the Centers for Disease Control and Prevention (CDC) to enhance survival rates and quality of life for Americans with congenital heart disease (CHD). It addresses the deadliest and most common birth defects, affecting children born every 15 minutes.

Senator Young expressed satisfaction with the bill's enactment, emphasizing its role in encouraging research to improve care for 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," he stated.

Senator Durbin highlighted improvements in screening and surgeries that have saved thousands of lives. He noted bipartisan efforts led to the bill's passage: "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 Act reauthorizes CDC's surveillance systems for tracking epidemiology and gathering longitudinal data on CHD patients as they age. It also supports awareness-building activities within medical communities and directs Health and Human Services to assess research gaps for adult CHD patients.

In 2018, Young and Durbin expanded CDC's CHD program scope to include epidemiological data across lifespans. This was aimed at improving outcomes while reducing costs since pediatric hospitalizations related to CHD cost $9.8 billion annually.

Despite advances allowing 80% of youth with CHD to survive past 35 years old, there is no cure. Survivors require lifelong specialized care due to increased risks such as disability or premature death.

Organizations supporting the Act include the Adult Congenital Heart Association (ACHA), American Heart Association, Children’s Hospital Association among others. Mark Roeder from ACHA praised provisions addressing workforce shortages in adult CHD care: "As the population of adults with CHD grows...we applaud Senators Durbin and Young for developing this bipartisan solution."

Carissa Ostrom from Conquering CHD called it a major step forward: "By continuing to champion these efforts...we can improve quality of life." Leah Evangelista from Children's Hospital Association stressed early detection's importance: "Children’s hospitals are committed to driving innovation...and we are proud to support" this legislation through bipartisan collaboration.