11.21.24

Durbin, Young's Congenital Heart Futures Reauthorization Act Signed Into Law

Durbin joined President Biden at the bill signing today

WASHINGTON – U.S. Senate Majority Whip Dick Durbin (D-IL) and U.S. Senator Todd Young (R-IN) today applauded President Biden for signing into law their Congenital Heart Futures Reauthorization Act, legislation that extends 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 two-and-a-half million Americans living with congenital heart disease (CHD). Heart defects are the deadliest and most common form of birth defects—every 15 minutes a child is born with a heart defect. The bipartisan legislation builds upon the law Durbin and Young passed in 2018 to expand CDC’s research and awareness efforts for CHD.

“Heart defects are the most common birth defect, and if you ever get the devastating news that your precious little one has a serious medical condition, you hope there’s a treatment or care option for them,” said 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. Thanks to President Biden, Senator Young, and colleagues in the House, we worked in a bipartisan way to get this done. 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.”

“I’m pleased to see this important bill become law. 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,” said Young.

“ACHA is especially excited about the new provisions in CHFRA’s reauthorization to address workforce shortages in adult CHD care,” said Mark Roeder, President and CEO of the Adult Congenital Heart Association. “Thankfully, in recent years, the number of children with CHD living into adulthood has continued to grow. As the population of adults with CHD grows, so does our need for a 21st-century workforce to provide them with the lifelong, specialized care they need. We applaud Senators Durbin and Young for developing this bipartisan solution to our community’s challenges and appreciate the President for signing it into law today.”

“We celebrate the signing of the Congenital Heart Futures Reauthorization Act as a major step forward for the millions of Americans living with congenital heart disease. By continuing to champion these efforts, we can improve the quality of life for those affected and foster hope for future generations,” said Carissa Ostrom, Executive Director Conquering CHD.

“Identifying congenital heart defects as early as possible and ensuring children receive the very best care is critical to saving lives and improving outcomes for children,” said Leah Evangelista, Chief Public Affairs and Brand Officer of the Children’s Hospital Association. “Children’s hospitals are committed to driving innovation in the diagnosis and treatment of congenital heart defects, and we are proud to support the Congenital Heart Futures Reauthorization Act. Through bipartisan collaboration, these vital CDC programs will now continue to gather data on congenital heart defects and the health outcomes of individuals throughout their lifespan, while also increasing awareness among medical professionals and the public.”

Specifically, the Congenital Heart Futures Reauthorization Act would reauthorize CDC’s surveillance systems to track the epidemiology of children born with CHD and conduct research; reauthorize 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; reauthorize CDC’s awareness-building activities to enhance education among the CHD patient and medical communities; and Direct the 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.

In 2018, Durbin and Young led the effort to reauthorize CDC’s CHD program and expand its scope to gather epidemiological and longitudinal data on CHD patients across the lifespan, in order to improve health outcomes and reduce medical costs. Further, the 2018 reauthorization promoted awareness efforts, given that many adults living with CHD are unaware that they require specialized, long-term care, and fewer than 10 percent of adults living with complex CHD currently receive the recommended care.  CDC’s program received $8.25 million in Fiscal Year 2024 appropriations, more than double the program’s funding level in 2018. 

Pediatric CHD hospitalizations cost $9.8 billion annually. Early detection of congenital heart defects can be lifesaving. Thanks to significant strides in screening rates and surgical procedures, an estimated 80 percent of youth with CHD now survive at least 35 years. However, there is no cure.  As adult survivors age, they require lifelong, specialized care, and some patients face ongoing and additional health challenges, including an increased risk of disability, co-morbidities, and premature death.

Durbin first introduced the Congenital Heart Futures Act in 2009 with then-Senator Thad Cochran (R-MS). The bill was included in the Affordable Care Act, and supported research to build a set of best practices and understanding for how to screen and care for newborns with health defects.

The Congenital Heart Futures Reauthorization Act is supported by the Adult Congenital Heart Association, Conquering CHD, American Heart Association, American Academy of Pediatrics, Children’s Hospital Association, American College of Cardiology, Society for Thoracic Surgeons, National Down Syndrome Society, Children’s Heart Foundation, and Mended Little Hearts.  

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