Today, U.S. Representatives Gus Bilirakis (R-FL) and Adam Schiff (D-CA), along with original cosponsors Representatives Tony Cardenas (D-CA), Buddy Carter (R-GA), María Elvira Salazar (R-FL), and Darren Soto (D-FL), introduced the Congenital Heart Futures Reauthorization Act of 2024 – a bipartisan bill that will authorize continued funding for congenital heart disease research and surveillance programs at the Centers for Disease Control and Prevention (CDC).
History of the Congenital Heart Futures Act
First passed into law in 2010, the bipartisan Congenital Heart Futures Act was groundbreaking legislation authorizing research and data collection specific to Congenital Heart Disease. This law called for expanded infrastructure to track the epidemiology of CHD at the CDC and increased lifelong CHD research at the NIH.
The Congenital Heart Futures Act also urged the NHLBI to continue its use of its multi-centered congenital heart research network, the Pediatric Heart Network (PHN) that help guide the care of children and adults with CHD. Together, these efforts have improved our understanding of CHD across the lifespan, the age-specific prevalence, and factors associated with dropping out of appropriate specialty care.
We are excited that the reauthorization of this important law will allow the CDC and NIH to build upon existing programs and focus on successful activities addressing this public health need. First re-introduced in 2015, the CHRFA did not get passed during the 2015-2016 Congress. It was reintroduced in February of 2017 with some changes to the language to help forward movement of the bill, but the basic intent of the legislation is the same.
Key Aspect of the new Reauthorization Bill
The CHFRA continues these important activities and builds on them by:
- Assessing the current research needs and projects related to CHD across the lifespan at the NIH. The bill directs the NIH to assess its current research into CHD so that we can have a better understanding of the state of biomedical research as it relates to CHD
- Expanding research into CHD. The bill directs the CDC to continue to build their public health research and surveillance programs. This will help us understand healthcare utilization, demographics, lead to evidence-based practices and guidelines for CHD.
- Raising awareness of CHD through the lifespan. The bill allows for CDC to establish and implement a campaign to raise awareness of congenital heart disease. Those who have a CHD and their families need to understand their healthcare needs promote the need for pediatric, adolescent and adult individuals with CHD to seek and maintain lifelong, specialized care.
This comprehensive approach to CHD – the most prevalent birth defect – will address a necessary public health issue and lead to better quality of life and care for those with CHD.
“We celebrate a major step forward for the millions of Americans living with congenital heart disease with the submission of the Congenital Heart Futures Reauthorization Act 2024 to the House. The work the CDC is doing is pivotal to the CHD community.” -Carissa Ostrom, Executive Director Conquering CHD