Congenital Heart Futures Act

The Congenital Heart Futures Reauthorization Act will authorize the CDC and NIH to build upon existing successful programs to address a leading public health issue and improve the quality of life and care for individuals with CHD. CHF advocates played an instrumental role in the passing of this bill.

More specifically, the bill will:

  • Expand the CDC’s longitudinal surveillance of individuals with CHDs across the lifespan, including regarding healthcare utilization and demographics through a cohort study, leading to evidence-based practices and guidelines for CHDs.
  • Authorize an awareness, outreach and education campaign at CDC, which will help inform the children, adolescents and adults with CHDs who are unaware of their high risk of additional complications as they age about the need to seek and maintain lifelong, specialized care.
  • Assess the research needs and existing projects related to CHDs across the lifespan at NIH, which will allow us to better understand the current state of biomedical research and what gaps may exist. 

View the December 12, 2018 Amendment to the bill here.

Read more updates about the Congenital Heart Futures Reauthorization Act  here.

The Children’s Heart Foundation has been a key player in the successful passage of the first ever congenital heart disease specific legislation. Working closely with the member organizations of the National Congenital Heart Coalition, CHF participated in the drafting of the legislation and the sponsorship of the National Congenital Heart Lobby Day in 2009, to recruit legislative support for the bill.  The bill subsequently became law one year later, in March of 2010.

CHF is very grateful to Senator Richard Durbin (IL), Senator Thad Cochran (MS), Congressman Zack Space (OH) and Congressman Gus Bilirakis (FL) who each elected to be lead sponsors of the legislation.

What you can do now ...

As the Congenital Heart Futures Act was passed into law, we are now faced with a new beginning. Every year we will need to lobby for funding in the budget. We will need to continue to speak up loudly about why CHD research and surveillance should be a top national priority.

You can do this in three easy ways:

  • Write your legislators
  • Call their office today
  • Visit your legislators