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, which analyzed data from 1990 to 2021, is one of the first to examine the connection between socioeconomic factors and outcomes for nearly 300,000 adults with congenital heart disease aged 20 years and older.
As more children with congenital heart disease survive into adulthood due to advances in surgical and catheter-based treatments, the need for lifelong specialized cardiac care has become increasingly important. The American Heart Association and American College of Cardiology recommend ongoing care from specialists to maintain health and well-being. However, this study suggests that access to such care may be uneven across the United States.
Researchers used state-level data from the Global Burden of Disease Study and income and insurance data from the U.S. Census Bureau. They found that as median household income increased in a state, the death rate for people with congenital heart disease decreased. The relationship between death rates and individual income levels was stronger than the connection with the percentage of uninsured residents. This indicates 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,” 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. “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.”
Geography and access to resources, particularly specialized cardiac care, likely play a profound role in death and disability among adults with congenital heart disease. The study highlights the need for more trained specialists in adult congenital heart conditions and better distribution of these experts across the country. Expanding telehealth and improving insurance networks may also help improve access.
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 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.
The study’s findings show associations among income, insurance, and health outcomes, but cannot be interpreted as cause and effect. More research is needed to understand these connections and their impact on health and survival. Expanding access to expert care, particularly in under-resourced regions of the U.S., could play a profound role in improving outcomes for adults with congenital heart disease.
