Adults with congenital heart disease living in states with lower average household incomes and fewer people with health insurance have 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 state-level connections between socioeconomic factors and outcomes for this patient population.
Congenital heart disease, the most common birth defect worldwide, requires lifelong specialized cardiac care. Over the past three decades, advances in surgical and catheter-based treatments have enabled more children to survive into adulthood, but their ongoing health depends on access to expert care. The study found that as median household income increased in a state, death rates for adults with congenital heart disease decreased. However, the relationship with income was stronger than the link with insurance coverage alone, suggesting that having insurance does not guarantee access to the specialized care needed.
“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.”
Researchers analyzed nearly 300,000 adults aged 20 and older with congenital heart disease, examining death rates and disability-adjusted life years—a measure of healthy life years lost due to the condition. They found that geography and access to resources, particularly specialized cardiac care, likely play a profound role in outcomes. The study authors hypothesize that communities with higher income levels and more insured residents 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.”
The findings underscore the need for more trained specialists in adult congenital heart conditions and better systems to help patients navigate care. Expanding telehealth and improving insurance networks could also help bridge gaps, according to John. 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 many patients stop receiving specialized care when transitioning from pediatric to adult care, and that insurance or location can prevent others from seeing specialists.
According to the American Heart Association’s 2026 Heart Disease and Stroke Statistics, congenital heart defects are one of the most common birth defects globally and are the leading cause of death in the U.S. from a condition present since birth. The study’s limitations include its observational nature, which shows associations but cannot prove cause and effect. Factors like access to care could not be directly measured.
The research was published in the Journal of the American Heart Association, an open-access, peer-reviewed journal. The American Heart Association receives funding from various sources but maintains strict policies to prevent influence on its scientific content.
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