Adult Congenital Heart Association Advocacy Efforts

Find up-to-date information about ACHA's advocacy efforts.


The Congenital Heart Futures Reauthorization Act Approved by the Energy & Commerce Health Subcommittee

On Thursday, May 18, the House Energy & Commerce Health Subcommittee held a markup on the Congenital Heart Futures Reauthorization Act (CHFRA), H.R. 1222. The bill was unanimously approved by the Subcommittee and has been referred to the full Energy & Commerce Committee for consideration.

The Adult Congenital Heart Association (ACHA) has been working with Congressmen Gus Bilirakis (R-FL) and Adam Schiff (D-CA) since the bill’s introduction this spring to support its passage. Congressman Bilirakis’ opening remarks recognized ACHA’s support for the legislation. Regarding the bill, he stated:

These surveillance efforts will help improve our understanding of CHD across the lifespan, from birth to adulthood. This research will help us learn more about demographic factors such as age, race, gender or ethnicity. In addition, the legislation emphasizes the need for continued biomedical research at the National Institutes of Health on the diagnosis, treatment, and prevention of CHD. NIH will further research into the causes of congenital heart defects, including genetic causes, and study long-term outcomes in individuals with CHD of all ages. NIH may study data to identify effective treatments and outcomes, and identify barriers to lifelong care for individuals with congenital heart defects.

To read Congressman Bilirakis’ press release regarding the markup, click here. Other Subcommittee members, including the Chairman Michael Burgess and Representative Gene Green, also acknowledged the importance of this legislation to the adult living with CHDs.

While we do not yet know when the full Energy & Commerce Committee will consider this bill, this markup was an important step towards enactment. We will continue to keep you updated as CHFRA continues to advance through the process.

The Adult Congenital Heart Association is encouraging the Senate to reject the American Health Care Act (AHCA)

Contact the Senate Today!

(May 5, 2017) By a vote of 217 – 213 on May 4, 2017, the House passed the American Health Care Act (AHCA), legislation that would repeal parts of the Affordable Care Act (ACA) and change Medicaid from an open-ended entitlement system to one that limits states' federal funding through per capita caps. The measure now moves to the Senate, where it's expected to face major challenges.

The changes made to the AHCA to garner enough votes for passage in the House undermine several of the ACA’s private insurance reforms and could negatively impact access to care for adults with Congenital Heart Disease (CHD).  Under the House passed legislation, states would have the ability to waive several ACA private insurance reforms, including those related to age rating (older people could be charged more), essential health benefits (plans would not have to cover the broad range of health care services), and community rating (plans could charge people higher premiums based on their health status if they lapse in coverage). 

If these important ACA patient protections are waived, the result could be increased costs and decreased coverage for people with pre-existing conditions like CHD.  While a plan couldn’t decline to cover someone with a CHD, they could charge these individuals significantly more in premiums for coverage that provides fewer benefits. 

With your support, ACHA will shift its focus to the Senate and continue to advocate to maintain these critical patient protections.  At this point the Senate will not be taking up the AHCA, but instead they will be working on their own bill rather an amending the AHCA.  A group of 12 senators with members on the Finance, Budget, and Health, Education, Labor and Pensions (HELP) Committees, the three committees with jurisdiction over healthcare, have been tasked with developing the Senate alternative.


Contact the Senate Today!

Please contact your Senators today and share the Adult Congenital Heart Association’s key message that we don’t want the Senate to propose legislation that undermines ACA’s patient protections, particularly as they apply to individuals with pre-existing conditions.  

  1. Find your Senators

Enter your address here and you will be able to see contact information for your Members of Congress. Either visit his/her website or call their office.

  1. Talking points for telling your story:

  • I am calling (writing) because of an issue that is very personal to me, congenital heart disease (CHD). I am calling to let my Senator know that I don’t want them to propose legislation that undermines ACA’s patient protections, particularly as they apply to individuals with pre-existing conditions to people like me (or my loved one) and would increase costs and decrease coverage.
  • CHD is the most common category of birth defects, affecting more than a million Americans. Individuals born with CHDs require lifelong, costly specialized care, which is why we need access to insurance.


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