Adults with congenital heart disease living in states with lower household incomes and limited health insurance coverage face higher rates of death and disability, according to new research published today in the Journal of the American Heart Association. The study, which analyzed data from the Global Burden of Disease Study and U.S. Census Bureau from 1990 to 2021, examined nearly 300,000 adults aged 20 and older with congenital heart disease.
Congenital heart disease requires lifelong specialized cardiac care, as recommended by evidence-based guidelines from the American Heart Association and American College of Cardiology. Over the past three decades, advances in surgical and catheter-based treatments have allowed more children with the condition to survive into adulthood, but they continue to need regular access to expert care.
The research found that as median household income increased in a state, the death rate for people with congenital heart disease decreased. The relationship between income and death rates was stronger than the connection between death rates and the percentage of uninsured residents. This suggests that having health insurance alone does not guarantee access to specialized care, which may be limited by insurance type, high out-of-pocket costs, or geographic availability of specialists.
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., emphasized that understanding socioeconomic factors is essential for improving 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. “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 study is one of the first to examine the connection between state-level income and insurance data and health outcomes for adults with congenital heart disease. Researchers used disability-adjusted life years, a measure of healthy life lost due to the condition, alongside death rates. The findings show associations but cannot prove cause and effect, as factors like access to care were not directly measured.
Michelle Gurvitz, M.D., 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 lose 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.
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 from a condition present since birth in the U.S. The researchers call for expanding access to specialized care, particularly in under-resourced regions, through better distribution of trained specialists, telehealth, and improved insurance networks.
