Adults with congenital heart disease living in states with lower household incomes and limited health insurance coverage face higher rates of death and disability, according to new research published today in the Journal of the American Heart Association. The study, which analyzed data from the Global Burden of Disease Study and U.S. Census Bureau from 1990 to 2021, suggests that access to specialized care from adult congenital heart disease cardiologists may be a key factor in these disparities.
Congenital heart disease requires lifelong, regular follow-up with specialists, as recommended by evidence-based American Heart Association/American College of Cardiology guidelines. Over the past three decades, advances in surgical and catheter-based treatments have enabled more children with congenital heart disease to survive into adulthood, but these adults continue to need specialized care to maintain their health.
“Understanding how social and economic factors can influence survival and outcomes is essential,” said senior author Anitha John, M.D., Ph.D., medical director of the Washington Adult Congenital Heart Program at Children’s National in Washington, D.C. “Long-term outcomes and quality of life depend heavily on access to specialized, lifelong care for people with congenital heart disease.”
Key findings from the analysis include a strong inverse relationship between median household income and death rates among adults with congenital heart disease. As state-level income increased, death rates decreased. Interestingly, the connection between income and death rates was stronger than the link between insurance coverage and death rates, suggesting that simply having insurance does not guarantee access to the specialized care needed.
“While having health insurance does matter, it does not explain the differences we found in terms of how long people with congenital heart disease live,” John said. “This indicates that insurance alone doesn’t guarantee access to care. People may still face barriers if their insurance doesn’t cover specialized heart care or if out-of-pocket costs are too high. In many cases, specialized care may not be available in their area at all.”
Michelle Gurvitz, M.D., an American Heart Association volunteer expert and chair of the writing committee for the 2025 ACC/AHA/HRS/ISACHD/SCAI Guideline for the Management of Adults With Congenital Heart Disease, noted that many patients stop receiving specialized care when they transition from pediatric to adult care. “Additionally, this study shows that some patients cannot see specialists because of issues such as insurance or their location,” said Gurvitz, who was not involved in the study.
The researchers emphasize the need for more trained specialists in adult congenital heart conditions and better distribution of these experts across the country. Expanding telehealth and improving insurance networks may also help improve access. According to the American Heart Association’s 2026 Heart Disease and Stroke Statistics, congenital heart defects are among the most common birth defects worldwide and are the leading cause of death in the U.S. from a condition present since birth.
“We need to make sure everyone with congenital heart disease has the same access to specialty care throughout their lifetime, regardless of where they live,” John said.
