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 congenital heart disease, 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 the relationship among income levels, disability and death rates for nearly 300,000 adults with congenital heart disease aged 20 years and older. Researchers found that as median household income increased in a state, the death rate for people with congenital heart disease decreased. The link between death rates and income was stronger than the connection with the percentage of uninsured residents, suggesting that having health insurance alone does not guarantee access to specialized care.
"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. Then we can work toward improving access and reducing care gaps."
Congenital heart disease requires lifelong, regular access to specialized cardiac care, as recommended by evidence-based American Heart Association/American College of Cardiology guidelines. Over the past 30 years, more children with congenital heart disease have survived into adulthood due to better treatments, but they continue to need specialized care.
"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. "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."
Michelle Gurvitz, M.D., an American Heart Association volunteer expert and chair of the writing committee for the 2025 ACC/AHA/HRS/ISACHD/SCAI 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. "Additionally, this study shows that some patients cannot see specialists because of issues such as insurance or their location," she said.
The findings highlight the need for more trained specialists in adult congenital heart conditions, better distribution of these specialists across the country, and improved systems to help patients get referred to the right care throughout their lives. Expanding telehealth and improving insurance networks may also help improve access. 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 authors note that the findings show associations but cannot be interpreted as cause and effect, and factors like access to care could not be directly measured. More research is needed to understand these connections and their impact on the health, well-being and survival of people with congenital heart disease.
