People with congenital heart disease living in states with low household incomes and limited access to health insurance may face higher risks of death and disability, according to new research published today in the Journal of the American Heart Association. The study, an analysis of the Global Burden of Disease Study and U.S. Census data from 1990 to 2021, is one of the first to examine the connection between state-level socioeconomic factors and outcomes for adults with congenital heart disease.
Congenital heart disease, a condition present at birth, requires lifelong specialized cardiac care. Over the past three decades, advances in surgical and catheter-based treatments have allowed more children to survive into adulthood. However, as these patients age, access to expert care becomes critical. The study analyzed data on nearly 300,000 adults aged 20 and older with congenital heart disease, linking higher median household income to lower death rates. The relationship between income and survival was stronger than the association with insurance status alone, suggesting that having insurance does not guarantee access to specialized care.
“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.”
The findings highlight the role of geography and resources in determining health outcomes. Dr. Michelle Gurvitz, 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 lose access to 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,” said Gurvitz, who was not involved in the study.
The researchers hypothesize that disparities in access to adult congenital heart disease cardiologists and specialized treatment centers drive the observed differences. Expanding telehealth, improving insurance networks, and training more specialists could help bridge these gaps. According to the American Heart Association’s 2026 Heart Disease and Stroke Statistics, congenital heart defects are among the most common birth defects and the leading cause of death from a condition present since birth in the U.S.
The study's limitations include its inability to establish cause and effect, as associations may be influenced by unmeasured factors like direct access to care. Nevertheless, the findings underscore the need for equitable access to lifelong specialized care for all adults with congenital heart disease, regardless of where they live.
