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Leadership Update: CHD Prevalence and Impact

This is the leadership update from September's e-newsletter.

As I write this letter, many of ACHA’s neighbors in Philadelphia are gathering to celebrate Rosh Hashanah, the Jewish New Year. This celebration of new beginnings is also being felt here at ACHA’s office, as September brings an exciting new beginning for the congenital heart community. Last week, the Centers for Disease Control and Prevention (CDC) awarded three grants to fund the first-ever efforts to identify the prevalence and impact of congenital heart disease (CHD) among U.S. teens and adults. Using a blinded, merit-based selection process, the CDC selected researchers in three locations—the New York State Department of Health, Emory University, and the Massachusetts Department of Public Health—to pilot data-gathering activities in teens and adults with CHD.

Right now, the U.S. government does not have the information it needs to answer basic questions such as “How many people in the U.S. are now living with CHD?” and “How many people die from CHD each year?” Research shows that if you survive infancy with a serious congenital heart defect, the next time you are most likely to get sick or die from your CHD is as an adult. This is true whether or not you have successful childhood heart repair. By researching outcomes in teens and adults, our hope is that we can better understand why some congenital heart patients flourish while others do poorly over time, and use this information to guide treatment for children as well as adults.

Last week I also had the privilege of joining more than 30 international experts in congenital heart research as they gathered in Atlanta to help the CDC identify the public health research priorities that will most effectively promote congenital heart health across the lifespan. The group engaged in a robust process to identify research gaps and strategies in four key areas: epidemiology, health services, psychosocial outcomes, and long-term morbidity and mortality. The group then identified the top priority areas in which action was needed.

Which areas did these experts choose? The three areas that are at the heart of ACHA’s research and advocacy activities. The experts echoed ACHA’s belief that investing in large-scale studies of long-term outcomes is essential. Second, they agreed a key aspect of these efforts will be leveraging electronic health information. This is what ACHA and its partners at the Alliance for Adult Research in Congenital Cardiology executed in our NIH-funded REACH project. Finally, the experts also agreed that helping every CHD patient reach CHD specialty care should be a top priority, and that the fact that most adults with CHD do not get such care is a grave public health concern. It was gratifying to see ACHA’s strategic priorities confirmed by such an esteemed group of pediatric and adult congenital heart researchers and health policy experts.

Both these activities were the direct result of the successful passage and funding of the Congenital Heart Futures Act provisions. Since 2005, ACHA has helped congenital heart patients, families, and care providers contact their lawmakers to educate them about the lifelong impact of CHD. Thanks to these efforts, the CDC has taken on the first of what we hope will be many new public health efforts to improve and prolong the lives of the estimated 2.5 million Americans now living with CHD.

Fall also brings another key activity for ACHA—our end-of-year appeal. Over 40% of ACHA’s budget comes directly from donations from people like you. Your donation, of any size, lets us know that you believe in ACHA and the work that we do on behalf of the congenital heart community. With your help, we can keep striving for the best possible health and life for every person born with congenital heart disease.

Thanks for your support,

Amy Verstappen
ACHA President/CEO

Posted on Thursday, September 20, 2012

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