Congenital Heart Disease Legislation
In February, 2017, the Congenital Heart Futures Act Reauthorization Bill was re-introduced in the Senate (S.477) and House (H.R.1222) by legislative champions:
- Senator Dick Durbin (D-IL)
- Senator Bob Casey (D-PA)
- Representative Gus Bilirakis (R-FL)
- Representative Adam Schiff (D-CA)
Current Cosponsors (Updated 3/2/17)
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Here’s more information about the CHFRA:
Original 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.
Since the enactment of the Congenital Heart Futures Act, Congress has appropriated $11 million to the CDC for these activities. 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.
Here is the complete text as introduced in the House on 11/5/15. There are differences between how the bill in the House and Senate are written, based on key factors in the political process for each. This is anticipated to be reconciled later on in the bill passage process.
If you have any questions about this legislation, please contact our Director of Programs, Amy Basken, at firstname.lastname@example.org.
If you are interested in becoming an advocate for this important issue, visit the advocacy section of our website which contains information about signing-up, as well as tools to help you be an amazing advocate.
Together, we will CONQUER CHD!