DALLAS — Adults with congenital heart disease living in states with lower household incomes and limited access to health insurance 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 from 1990 to 2021, is among the first to examine state-level connections between socioeconomic factors and outcomes for nearly 300,000 adults with congenital heart disease aged 20 and older.
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 levels was stronger than the connection with the percentage of uninsured residents, suggesting that having insurance does not guarantee access to the specialized care required for this condition. 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., noted, “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. This indicates that insurance alone doesn’t guarantee access to care.”
Over the past 30 years, advances in surgical and catheter-based treatments have enabled more children with congenital heart disease to survive into adulthood. However, these adults require lifelong specialized cardiac care as recommended by evidence-based American Heart Association/American College of Cardiology guidelines. The study authors hypothesize that geographic and resource disparities, particularly access to adult congenital heart disease cardiologists, play a profound role in outcomes. “Expanding telehealth and improving insurance networks may also help to improve access,” John added.
Michelle Gurvitz, M.D., an American Heart Association volunteer expert and chair of the writing committee for the 2025 Guideline for the Management of Adults With Congenital Heart Disease, emphasized that many patients lose specialized care during the transition from pediatric to adult care. “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 globally and the leading cause of death in the U.S. from a condition present since birth. The study’s findings underscore the need for more evenly distributed specialists and better referral systems to ensure lifelong access to care.
