A new study published today in the Journal of the American Heart Association reveals that adults with congenital heart disease living in states with lower median household incomes and higher rates of uninsured residents face significantly higher risks of death and disability. The research, an analysis of the Global Burden of Disease Study and U.S. Census data from 1990 to 2021, highlights the critical role of access to specialized cardiac care in determining long-term outcomes for this growing patient population.
Congenital heart disease, a condition present at birth, requires lifelong specialized care. Over the past three decades, advances in surgical and catheter-based treatments have dramatically increased survival rates for children, leading to a growing population of adults living with the condition. However, the study suggests that survival and quality of life are not evenly distributed across the United States. Researchers found that as median household income increased in a state, death rates for adults with congenital heart disease decreased. The relationship between income and mortality was stronger than the link between insurance coverage rates and death, indicating that having insurance alone does not guarantee access to the specialized care these patients need.
“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. “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 for people who have congenital heart disease.” The study analyzed data on nearly 300,000 adults aged 20 and older with congenital heart disease, examining death rates and disability-adjusted life years—a measure of healthy life lost due to the condition.
The findings point to geographic and resource disparities as key drivers of outcomes. “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.” The authors emphasize the need for more trained specialists in adult congenital heart disease and better systems to facilitate patient referrals throughout their lives.
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. She added that the new guideline outlines when to seek expert assistance and how specialists can collaborate with other healthcare providers to enhance access.
The study’s limitations include its reliance on state-level data, which may not capture individual-level variations, and the fact that associations do not prove causation. However, the findings underscore the urgent need to expand access to expert care, particularly in under-resourced regions. 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 the leading cause of death in the U.S. from a condition present since birth.
