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 and death, according to new research published today in the Journal of the American Heart Association, an open-access, peer-reviewed journal of the American Heart Association.
The study, which analyzed data from the Global Burden of Disease Study and U.S. Census data from 1990 to 2021, examined nearly 300,000 adults aged 20 years and older with congenital heart disease. Researchers found that 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 between death rates and the percentage of residents without insurance, suggesting that simply having health insurance does not guarantee access to specialized care.
“Understanding how social and economic factors can influence survival and outcomes is essential. Long-term outcomes and quality of life depend heavily on access to specialized, lifelong care for people with congenital heart disease,” 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. “Seeing how these factors affect patients long term allows us to better identify people at highest risk for complications. Then we can work toward improving access and reducing care gaps for people who have congenital heart disease.”
Congenital heart disease requires lifelong, regular access to specialized cardiac care, as recommended by the 2025 ACC/AHA/HRS/ISACHD/SCAI Guideline for the Management of Adults With Congenital Heart Disease. However, access to such care is uneven across the United States. The study authors hypothesize that communities with higher income levels and more residents with health insurance may have easier access to adult congenital heart disease cardiologists.
“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. “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.”
Michelle Gurvitz, M.D., an American Heart Association volunteer expert and chair of the writing committee for the 2025 guideline, who was not involved in this study, added, “The 2025 guideline outlines when to seek expert assistance and how specialists can work together with other healthcare providers to enhance access to care. 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.”
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 congenital heart disease is the leading cause of death in the U.S. from a condition present since birth. The study authors emphasize that expanding access to expert care, particularly in under-resourced regions, could play a profound role in improving survival and quality of life for adult congenital heart disease patients.
The study had limitations, including that the findings show associations but cannot be interpreted as cause and effect, and factors like access to care could not be directly measured. More research is needed to understand these connections fully.
