This post was authored by Gerard R. Martin, MD, FACC, a past chair of the ACC’s Adult Congenital and Pediatric Cardiology Council and senior vice president, Center for Heart, Lung and Kidney Disease, Children's National Health System.

Congenital heart disease (CHD), the number one birth defect is a growing problem in the U.S. due to excellent childhood treatments.  As such, the number of adults living with CHD has exceeded the number of children with CHD, and it has become more important than ever to ensure that Congress understands that CHD is a life-long disease.

This week members and staff from the College, and more than 50 patient advocates and their families took part in the annual Congenital Heart Advocacy Day activities. The two-day event included a day dedicated to patient/professional education where advocates learned how to effectively tell their story and connected with other CHD patients and professionals. The day concluded with a welcome reception hosted at Heart House, where advocates and family members, including representatives from Mended Little Hearts and the Adult Congenital Heart Association, were in attendance, and heard speeches from ACC members, including Christopher Learn, MD and Jennifer Ting, MD, FACC, and patient advocates and family members.

Today, advocates hit Capitol Hill to share their experiences and stories with members of Congress and to encourage Representatives to join the Congressional Congenital Heart Caucus. Advocates shared why National Institutes of Health funding for research and Centers for Disease Control and Prevention funding for surveillance is so critically important to improve care for the nearly 4 million adult CHD and pediatric CHD patients.

The ACC and several of its chapters have been sponsors of the advocacy day since the first Congenital Heart Lobby Day in 2007. This issue is important to the College, and we are glad to see continued support from ACC’s members and the CHD patients and family members that continue to come together for this important educational activity.

This week was also an exciting week for pulse ox screening, as it was announced that Virginia passed the crucial pulse ox screening legislation. Pulse oximetry has proven to be a safe, effective, inexpensive and noninvasive method of screening for critical congenital heart defects (CCHD), but it has been a long road to ensuring its widespread use. Moving forward, the ACC will continue to engage with partners such as the American Academy of Pediatrics, the American Heart Association and Mended Little Hearts to ensure the voice of CCHD patients and caregivers is heard on the state level as well as Capitol Hill.

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