Durbin Meets with Adult Congenital Heart Association

Heart defects are the deadliest and most common form of birth defects—every 15 minutes a child is born with a heart defect & survival rates into adulthood are improving thanks to federal investments

WASHINGTON – U.S. Senate Majority Whip Dick Durbin (D-IL), Co-Chair of the Congressional Heart and Stroke Caucus, today met with board members of the Adult Congenital Heart Association (ACHA), including President and CEO Mark Roeder.  During their meeting, Durbin and the ACHA patient and physician board members discussed building support for Durbin’s bipartisan Congenital Heart Futures Reauthorization Act and bolstering funding for the Centers forDisease Control and Prevention (CDC) program that addresses congenital heart disease (CHD).

“Heart defects are the most common birth defect, and if you ever receive the devastating news that your child has a serious medical condition, you hope there’s treatment options for them.  We have seen an incredible improvement in screening and surgeries forchildren born with heart defects, but we must continue to fund our research, workforce, and education efforts,” said Durbin. “Today I met with the Adult Congenital Heart Association to discuss legislative efforts to increase public health funding and resources for those living with congenital heart disease.” 

A photo of the meeting is available here.

Earlier this month, Durbin and U.S. Senator Todd Young (R-IN) introduced the Congenital Heart Futures Reauthorization Act, legislation that extends funding for public health efforts at CDC to improve childhood survival rates, prevent premature death and disability, and increase quality of life for the 2.5 million Americans living with CHD.

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 2023 appropriations, more than double the program’s funding level in 2018. 

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.