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 combined with U.S. Census data from 1990 to 2021, is one of the first to examine the connection between socioeconomic factors and outcomes for adults with congenital heart disease.
Over the past three decades, advances in surgical and catheter-based treatments have enabled more children with congenital heart disease to survive into adulthood. However, these individuals require lifelong specialized cardiac care, as recommended by evidence-based American Heart Association/American College of Cardiology guidelines. The study suggests that access to such care is uneven across the United States, with significant implications for survival and quality of life.
Researchers analyzed data on nearly 300,000 adults aged 20 and older with congenital heart disease. They found 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 coverage and death rates, indicating that having insurance alone does not guarantee access to specialized care.
“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,” said senior author Dr. Anitha John, medical director of the Washington Adult Congenital Heart Program at Children’s National in Washington, D.C. “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.”
The study underscores the importance of addressing geographic and resource disparities. Dr. John emphasized the need for more trained specialists in adult congenital heart conditions and better systems to help patients transition from pediatric to adult care. “Expanding telehealth and improving insurance networks may also help to improve access,” she added.
Dr. Michelle Gurvitz, an American Heart Association volunteer expert and chair of the writing committee for the 2025 joint 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 among the most common birth defects worldwide and the leading cause of death in the U.S. from a condition present since birth.
The study authors acknowledge that the findings show associations, not cause and effect, and that factors like access to care could not be directly measured. Nonetheless, the research highlights a critical need to ensure equitable access to specialized cardiac care for all adults with congenital heart disease, regardless of where they live.
