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 become disabled or die from the condition, according to new research published today in the Journal of the American Heart Association.
The study, based on an analysis of the Global Burden of Disease Study and U.S. Census data from 1990 to 2021, examined the relationship among income levels, disability and death rates for nearly 300,000 adults with congenital heart disease aged 20 and older. The research is one of the first to explore connections between state-level socioeconomic factors and outcomes for this patient population.
“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 Dr. Anitha John, 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.”
The 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 income was stronger than the connection with the percentage of uninsured residents, suggesting that having insurance alone does not guarantee access to specialized care. Differences in insurance types, high out-of-pocket costs, and geographic availability of specialists may be contributing factors.
Over the past 30 years, more children with congenital heart disease have survived into adulthood due to advances in surgical and catheter-based treatments. However, these adults require ongoing specialized cardiac care as recommended by evidence-based guidelines from the American Heart Association and American College of Cardiology.
Dr. Michelle Gurvitz, an American Heart Association volunteer expert and chair of the writing committee for the 2025 ACC/AHA/HRS/ISACHD/SCAI joint guideline on managing adults with congenital heart disease, noted that many patients stop receiving specialized care when transitioning from pediatric to adult care. “Additionally, 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 researchers hypothesize that easier access to specialized care from adult congenital heart disease cardiologists in higher-income, better-insured communities may explain the disparities. Expanding telehealth, improving insurance networks, and training more specialists in underserved areas could help address these gaps.
“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. “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.”
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 findings are available online at the Journal of the American Heart Association website.
