Survival Rates for Adults With Congenital Heart Disease Linked to Access to Specialized Cardiac Care, Income, and Insurance Status

People with congenital heart disease living in states with low household incomes and limited access to health insurance and specialized care may face higher risks of disability or death, 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, found that as median household income increased in a state, the death rate for people with congenital heart disease decreased.

Congenital heart disease, which affects heart or blood vessel structure present at birth, requires lifelong specialized care. Over the past three decades, advances in surgical and catheter-based treatments have allowed more children to survive into adulthood, but ongoing access to expert care remains critical. The research examined nearly 300,000 adults aged 20 and older with congenital heart disease and found that the relationship between death rates and income levels was stronger than the link between death rates and the percentage of uninsured residents. This suggests that having health 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 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.”

The authors hypothesize that geography and access to resources, particularly specialized cardiac care from adult congenital heart disease cardiologists, play a profound role in outcomes. They call for expanding access to expert care, especially in under-resourced regions, to improve survival and quality of life. “We also need more trained specialists in adult congenital heart conditions. These medical experts should be more evenly distributed across the country, particularly where congenital heart disease patients live and work,” John added. “Expanding telehealth and improving insurance networks may also help to 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 Guideline for the Management of Adults With Congenital Heart Disease, noted that many patients stop receiving 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 in the U.S. from a condition present since birth. The study’s findings underscore the need for better systems to ensure equitable access to specialized care throughout patients' lifetimes.