Senate Introduces the Congenital Heart Futures Reauthorization Act of 2024 to Reauthorize CHD Surveillance Research Funding and Address ACHD Workforce Shortages

Posted Wednesday, Feb 07, 2024

 

The Adult Congenital Heart Association Thanks Bipartisan Legislators for Work to Reauthorize CHD Programs and Address Workforce Needs

Earlier today, U.S. Senators Dick Durbin (D-IL) and Todd Young (R-IN) introduced the Congenital Heart Futures Reauthorization Act of 2024, joining their colleagues, Congressman Gus Bilirakis (R-FL) and Adam Schiff (D-CA) in the U.S. House of Representatives, who last week introduced the bipartisan bill in that chamber.

The Congenital Heart Futures Reauthorization Act of 2024 reaffirms our country’s commitment to vital research, surveillance, and awareness programs at the Centers for Disease Control and Prevention (CDC) by reauthorizing funding at $10 million annually through FY 2029.

The legislation also requires the Secretary of Health and Human Services (HHS) to convene a workshop of subject matter experts on adults living with congenital heart disease (CHD) to identify research gaps and opportunities for the lifelong needs of patients, assess the workforce capacity of healthcare providers to treat adult patients and recommend options to address any workforce shortages, and foster collaboration across federal agencies, healthcare providers, researchers, and patient organizations. Within three years after becoming law, the HHS Secretary will be required to issue a report to Congress with findings and recommendations to advance research relating to the lifelong needs of CHD patients and address the workforce shortages impacting the adult congenital heart disease (ACHD) population.

"This legislative proposal is an important first step toward addressing the adult congenital healthcare workforce crisis, which our country is unprepared to tackle,” said Mark Roeder, President and CEO of the Adult Congenital Heart Association. "Despite nearly 2 million adults living with CHDs in the United States, there are only 509 ACHD board-certified physicians providing care to these patients. The Adult Congenital Heart Association is thankful to see these innovative solutions to address the workforce shortages impacting the CHD care community.”

Approximately 1 in 100 children are born with a heart defect, and because of significant advancements in detection and treatment more than 85 percent of these children now live into adulthood. However, only 10 percent of adults with CHD receive the recommended specialized, lifelong care that they require. This is due in part to the limited number of ACHD fellowship-trained providers, ACHD fellowship training programs, and regional care centers.

The Adult Congenital Heart Association is proudly partnering with The Children’s Heart Foundation, Conquering CHD, and Mended Little Hearts to support passage of the Congenital Heart Futures Reauthorization Act of 2024.

“We applaud Senators Durbin and Young and Representatives Bilirakis and Schiff for their support of congenital heart defect research and advocacy – something that is so critical in this country,” said Gail Roddie-Hamlin, President and CEO of The Children’s Heart Foundation. “This legislation will greatly impact the lives of the millions of babies, children, and adults living with congenital heart defects in the U.S.”

“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 of 2024. The work the CDC is doing is pivotal to the CHD community,” stated Carissa Ostrom, Executive Director of Conquering CHD.

“We are pleased to support and collaborate with our partners on the Congenital Heart Futures Reauthorization Act of 2024, building on the success of the previous passage in 2010 and its reauthorization in 2018,” said Mandy Sandkuhler, Communications Director for Mended Little Hearts. “The advancement of this legislation will help ensure increased awareness, research opportunities and data collection for adults living with congenital heart disease.”

We invite you to join ACHA and others throughout the CHD community by encouraging Congress to pass this vital legislation. Click here to learn more and send letters to your elected representatives.

Contact Congress Today

Demand better research, surveillance, and awareness of ACHD by calling on Congress to act now on the Congenital Heart Futures Reauthorization Act of 2024. Contact your elected officials today.