Adults with congenital heart disease living in states with lower household incomes and limited health insurance coverage are more likely to die or become disabled from their condition, according to a study published today in the Journal of the American Heart Association. 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 long-term outcomes.
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 enabled more children to survive into adulthood, but these adults continue to need expert management. The study examined nearly 300,000 adults aged 20 and older, finding that as median household income increased in a state, death rates decreased. The relationship between income and mortality was stronger than the link between insurance rates and death, suggesting that insurance alone does not guarantee access to the specialized care required.
“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.”
The study, one of the first to use state-level data to explore these connections, found that geography and resource availability—particularly access to adult congenital heart disease cardiologists—likely play a profound role. According to the American Heart Association’s 2025 ACC/AHA/HRS/ISACHD/SCAI Guideline for the Management of Adults With Congenital Heart Disease, patients should have regular access to specialized care. However, many face barriers such as inadequate insurance coverage, high out-of-pocket costs, or a lack of nearby specialists.
Michelle Gurvitz, M.D., an American Heart Association volunteer expert and chair of the guideline writing committee, 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.” Gurvitz, a cardiologist at Boston Children’s Hospital and associate professor at Harvard Medical School, was not involved in the study.
The findings carry significant implications for health policy and clinical practice. Researchers emphasize the need to expand access to expert care, particularly in under-resourced regions, and to train more specialists in adult congenital heart conditions. “We need more trained specialists in adult congenital heart conditions. These medical experts should be more evenly distributed across the country, particularly where congenital heart disease patients live and work,” John said. “Additionally, we need better systems to help patients get referred to the right care throughout their lives.”
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 from a condition present since birth in the U.S. The study’s authors stress that expanding telehealth and improving insurance networks could help bridge gaps in care.
The research, published in the Journal of the American Heart Association, found associations between income, insurance, and health outcomes, but not cause-and-effect. Limitations include the inability to directly measure access to care. Nonetheless, the findings highlight a pressing need to address disparities in specialized cardiac care for adults with congenital heart disease.
