People with congenital heart disease living in states with low household incomes and limited health insurance coverage 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 the Global Burden of Disease Study and U.S. Census Bureau from 1990 to 2021, examined nearly 300,000 adults aged 20 and older with congenital heart disease.
Over the past three decades, advances in surgical and catheter-based treatments have allowed more children with congenital heart disease to survive into adulthood. However, these individuals require lifelong specialized cardiac care, as outlined in evidence-based guidelines from the American Heart Association and American College of Cardiology. The new research suggests that access to such care may be uneven across the United States.
“Understanding how social and economic factors can influence survival and outcomes is essential,” 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.”
The study 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 income was stronger than the connection with the percentage of uninsured residents. This suggests 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,” 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.”
Geography and access to resources, particularly specialized cardiac care, likely play a major role in outcomes. The researchers note that more trained specialists in adult congenital heart conditions are needed, and they should be more evenly distributed 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, commented on the findings. “The 2025 guideline outlines when to seek expert assistance and how specialists can work together with other healthcare providers to enhance access to care,” said Gurvitz, who was not involved in the study. “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 among the most common birth defects worldwide and are the leading cause of death in the U.S. from a condition present since birth.
The study has limitations, as the findings show associations but cannot prove cause and effect. Factors like access to care, which the researchers could not directly measure, may influence the results. Nevertheless, the authors emphasize that expanding access to expert care, particularly in under-resourced regions, could profoundly improve survival and quality of life for adults with congenital heart disease.
