By Robert Campbell, M.D., Chief of Cardiac Services at Children’s Sibley Heart Center
Wendy Book, M.D, Director of the Emory Adult Congenital Heart Center
A few decades ago, babies born with serious heart defects often died in childhood. But now, with advances in medical care, these patients with Congenital Heart Defects (CHD) are living longer than ever before, growing up to be teenagers and adults who need ongoing, specialized care. There are two million people in the US living with CHD, and for the first time, there are far more adults with CHD living in Georgia than there are children.
As we treat patients from birth to the brink of adulthood at Children’s Sibley Heart Center and during their adult years at Emory Healthcare, we are seeing an alarming decrease in the number of patients receiving necessary and life-saving care as adults. Only ten percent of adults with CHD are getting the care they need.
While little research has been done to quantify the problem in the United States, over 40 percent of CHD patients in Canada and Europe stop seeing heart specialists between the ages of 13 and 21 years old. That’s nearly half of a chronically ill population who simply stop getting the healthcare they need.
One reason this is happening is a lack of education and awareness. Families and patients falsely believe that when a child doesn’t have symptoms after receiving good pediatric care that a “cure” has been found. Unfortunately, the treatment of these congenital diseases rarely results in a cure, and current guidelines recommend lifelong care and observation for these patients.
Another reason for the decline in the number of CHD patients who continue treatment is a common characteristic of the transitioning group: age. These young people in their teens and early 20s often believe they are “invincible,” and unless they have symptoms, they do not see the need for ongoing treatment into adulthood.
In addition to education and age, a critical roadblock for patients is a lack of health insurance or the means to pay for the care they need. Medical bills can quickly pile up for patients with lifelong illnesses, and seeking medical care might feel like a luxury when someone otherwise feels fine. Medicaid currently ends when patients turn 19 years old, and with 60 percent of our patients on Medicaid at Children’s Sibley Heart Center, this means that half our patients who need long-term care will struggle with access to qualified physicians.
We saw an opportunity to correct this gap in care by strengthening the relationships between pediatric and adult healthcare providers. Children’s Healthcare of Atlanta and Emory Healthcare are partnering to launch the Congenital Heart Center of Georgia (CHCG). One of the largest programs in the U.S.—and the only one in Georgia— CHCG is a comprehensive program for children and adults with CHD, providing a continuum of care from before birth through adulthood.
This partnership gives patients access to state of the art pediatric and adult congenital cardiac care in Atlanta. We work to ensure our CHD patients get the help they need – both for their hearts and for the transition into adulthood – so that no one who needs lifelong care goes without. We are able to more closely track our patients’ progress because everything is done in-house, regardless of age or pediatric vs. adult status.
While the CHCG is not able to address or correct every roadblock, such as access to Medicaid or adolescents feeling invincible, we believe the CHCG is a step in the right direction to help our patients receive continued, critical care for a healthier life, and hopefully one that is long and productive.