People with congenital heart disease living in states with low household incomes and limited access to health insurance and specialized care may be more likely to die or become disabled, 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 is one of the first to examine the connection between health outcomes for adults with congenital heart disease and state-level socioeconomic factors, using data from the Global Burden of Disease Study and U.S. Census Bureau from 1990 to 2021. Researchers analyzed nearly 300,000 adults aged 20 and older with congenital heart disease, a condition present at birth that requires lifelong specialized cardiac care.
Key findings indicate 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 was stronger than the connection with the percentage of uninsured residents, suggesting that having insurance does not guarantee access to the specialized care needed.
“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.”
John emphasized that geography and access to resources, particularly specialized cardiac care, likely play a profound role in death and disability. The study highlights the need for more trained specialists in adult congenital heart conditions and better distribution of these experts across the country, especially where patients live and work.
“We need to make sure everyone with congenital heart disease has the same access to specialty care throughout their lifetime, regardless of where they live,” John said. Expanding telehealth and improving insurance networks may also help improve access, she added.
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 the guideline outlines when to seek expert assistance and how specialists can work with other healthcare providers to enhance access. “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.
The findings underscore the importance of expanding access to expert care, particularly in under-resourced regions of the U.S., to improve survival and quality of life for adults with congenital heart disease. 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 limitations include that the findings show associations, not cause and effect, and the researchers could not directly measure factors like access to care. More research is needed to understand these connections and their impact on health outcomes.
