Lobbying for Congenital Heart Awareness

Congenital heart awareness efforts were in full force as National Heart Month came to a close at the end of February. On March 1, the American College of Cardiology’s (ACC) Adult Congenital and Pediatric Cardiology (ACPC) section partnered with the Adult Congenital Heart Association (ACHA) and Mended Little Hearts to raise awareness on Capitol Hill about the scope and impact of congenital heart disease (CHD). As part of “National Congenital Heart Lobby Day”, nearly 100 advocates gave Congress a first-hand look at the importance of continued funding for the Congenital Heart Futures Act, which was included in the Affordable Care Act and passed into law in 2012. The law established a population-based surveillance registry (through the CDC's existing National Center on Birth Defects and Disabilities) that will allow for increased research to better understand CHD incidence, prevalence and disease burden, as well as a CHD public health impact assessment. Advocates also promoted the recently established Congenital Heart Caucus, chaired by Rep. Bilirakis (R-FL).

Ahead of lobby day, ACHA and Mended Little Hearts hosted a briefing on Capitol Hill to discuss the need for increased National Institutes of Health (NIH) funding and to encourage Congressional participation in the caucus. Karen Kuehl, MD, FACC, a congenital heart specialist at Children's National Medical Center who’s goal is for her patients to outlive her, emphasized that CHD is a public health concern that the U.S. is not prepared to handle. She stressed the urgency for researching babies with CHD as well as adults with the disease, underscoring that “the more we know now, the more we can respond to later”. ACC recently joined a support letter calling on the Senate Labor-Health and Human Services-Education Appropriations Subcommittee to provide FY 2013 funding to conduct surveillance of CHD at the CDC and allocate resources for research on CHD at the National Heart, Lung and Blood Institute (NHLBI).

On the eve of lobby day, ACC hosted a reception at Heart House that united CHD patients, their families and representatives from ACC, Mended Little Hearts and ACHA and recognized key advocates in the fight for CHD awareness. Rep. Bilirakis spoke of his commitment to “giving children the opportunity to succeed” and dedication to educating and motivating Congress to support research and funding for future CHD advancements. ACPC Chair Gerard Martin, MD, FACC, described his amazement at the lack of public awareness that children, not only adults, suffer from heart complications and ACPC Council member Kathy Jenkins, MD, MPH, FACC, expressed her excitement for a dedicated congenital heart advocacy event. Doron Weber, who chronicled his son’s losing battle with CHD in the book “Immortal Bird: A Family Memoir,” called for increased research and better data surveillance.

For more on the ACC’s involvement in CHD, visit the Adult Congenital and Pediatric Cardiology (ACPC) member section on CardioSource.org. The ACPC Section has played a major role in strengthening educational programming for congenital cardiology care providers and has several significant accomplishments in science and quality, including the development of the IMPACT Registry™, which tracks diagnostic and interventional cardiac catheterization in pediatric and congenital heart disease patients. In addition, the ICD Registry™ now includes data elements specific to the pediatric population.

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