Adults with congenital heart disease living in states with low household incomes and limited health insurance coverage may face higher rates 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 data from 1990 to 2021, is among the first to examine the link between socioeconomic factors and outcomes for adults 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 rates and individual income levels was stronger than the connection with the percentage of uninsured residents, suggesting that having insurance alone does not guarantee access to specialized care. Congenital heart disease requires lifelong, regular access to specialized cardiac care, as recommended by the American Heart Association and American College of Cardiology guidelines.
“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. “Long-term outcomes and quality of life depend heavily on access to specialized, lifelong care for people with congenital heart disease.”
The study examined nearly 300,000 adults aged 20 and older with congenital heart disease. The findings indicate that geography and access to resources—particularly specialized cardiac care—likely play a profound role in death and disability. John noted that insurance alone doesn’t guarantee access if plans don’t cover specialized heart care or if out-of-pocket costs are too high. In many cases, specialized care may not be available locally.
“We need more trained specialists in adult congenital heart conditions, and they should be more evenly distributed across the country,” John said. “Expanding telehealth and improving insurance networks may also help to improve access.”
Michelle Gurvitz, M.D., a volunteer expert for the American Heart Association and chair of the writing committee for the 2025 ACC/AHA/HRS/ISACHD/SCAI Guideline for the Management of Adults With Congenital Heart Disease, commented that the new guideline outlines when to seek expert assistance and how specialists can collaborate with other providers. “Many patients stop receiving specialized care when they transition from pediatric to adult care,” she said. “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 globally and the leading cause of death in the U.S. from a condition present since birth. The study’s authors emphasize that expanding access to expert care, particularly in under-resourced regions, could improve survival and quality of life for adult congenital heart disease patients.
