A study published today in the Journal of the American Heart Association found that adults with congenital heart disease living in states with lower median household incomes and higher rates of uninsured residents experience higher rates of death and disability. The research, which analyzed data from the Global Burden of Disease Study and U.S. Census Bureau from 1990 to 2021, underscores the critical role of access to specialized cardiac care in outcomes for this population.
Congenital heart disease requires lifelong, specialized care. Over the past three decades, advances in surgical and catheter-based treatments have enabled more children to survive into adulthood, but they continue to need expert follow-up. The study examined nearly 300,000 adults aged 20 and older with congenital heart disease, finding that as median household income increased, death rates decreased. The association was stronger for income than for insurance status alone, suggesting that having insurance does not guarantee access to the specialized care needed.
“Understanding how social and economic factors can influence survival and outcomes is essential,” said senior author Dr. Anitha John, medical director of the Washington Adult Congenital Heart Program at Children’s National in Washington, D.C. “Seeing how these factors affect patients long term allows us to better identify people at highest risk for complications. Then we can work toward improving access and reducing care gaps.”
Geography and resource availability likely play a profound role. The study authors hypothesize that communities with higher incomes and more insured residents may have better access to adult congenital heart disease cardiologists. “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 added. “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.”
Dr. Michelle Gurvitz, an American Heart Association volunteer expert and chair of the writing committee for the 2025 ACC/AHA/HRS/ISACHD/SCAI joint Guideline for the Management of Adults With Congenital Heart Disease, noted that many patients stop receiving specialized care when transitioning from pediatric to adult care. “Additionally, this study shows that some patients cannot see specialists because of issues such as insurance or their location,” she said. The new guideline outlines when to seek expert assistance and how specialists can work with other providers to enhance access.
The American Heart Association’s 2026 Heart Disease and Stroke Statistics indicate that congenital heart defects are among the most common birth defects globally and are the leading cause of death in the U.S. from a condition present since birth. The study’s findings suggest that expanding access to expert care, particularly in under-resourced regions, could improve survival and quality of life. More research is needed to understand the connections between income, insurance, and access to specialized care, and to develop strategies to reduce disparities.
For more information, see the full manuscript in the Journal of the American Heart Association (https://www.ahajournals.org/journal/jaha) and the American Heart Association’s news release on the new guideline (https://newsroom.heart.org/news/acc-aha-issue-new-guideline-on-managing-congenital-heart-disease-in-adults).
