People with congenital heart disease living in states with low household incomes and limited access to health insurance and specialized care may be more likely to become disabled or die from the condition, according to new research published today in the Journal of the American Heart Association, an open-access, peer-reviewed journal of the American Heart Association.
The study, one of the first to examine the connection between survival and state-level socioeconomic factors, analyzed data from the Global Burden of Disease Study and the U.S. Census from 1990 to 2021. Researchers looked at nearly 300,000 adults with congenital heart disease aged 20 years and older, examining the relationship among income levels, insurance status, and rates of death and disability.
“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 analysis found that as median household income increased in a state, the death rate for people with congenital heart disease decreased. The relationship between death rate and income was stronger than the connection between death rates and the percentage of residents without insurance. This suggests that simply having health insurance does not guarantee access to the specialized care required for congenital heart disease.
“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.”
Over the past 30 years, more children with congenital heart disease have survived into adulthood due to better surgical and catheter-based treatments. However, as these children grow into adults, they require lifelong specialized cardiac care, as recommended by evidence-based American Heart Association/American College of Cardiology guidelines. The study authors hypothesize that differences in access to adult congenital heart disease cardiologists may explain the geographic disparities in outcomes.
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.
According to the American Heart Association’s 2026 Heart Disease and Stroke Statistics, congenital heart defects are one of the most common birth defects worldwide and the leading cause of death in the U.S. from a condition present since birth. Expanding access to expert care, particularly in under-resourced regions, could improve survival and quality of life for adult congenital heart disease patients.
