People with congenital heart disease living in states with low household incomes and limited access to health insurance may face higher risks of disability and death, according to new research published today in the Journal of the American Heart Association. The study, an analysis of the Global Burden of Disease Study combined with U.S. Census data from 1990-2021, is one of the first to examine the connection between socioeconomic factors and outcomes for adults with congenital heart disease.
Over the past three decades, advances in surgical and catheter-based treatments have allowed more children with congenital heart disease to survive into adulthood. However, these individuals require lifelong specialized cardiac care, as outlined in the 2025 ACC/AHA/HRS/ISACHD/SCAI Guideline for the Management of Adults With Congenital Heart Disease. The study highlights that access to such care may be uneven across the United States, with significant implications for patient outcomes.
Researchers analyzed data on nearly 300,000 adults aged 20 and older with congenital heart disease, correlating state-level death rates and disability-adjusted life years with median household income and insurance coverage. They found that as median household income increased, death rates decreased. The relationship between income and survival was stronger than the link between insurance status and death rates, suggesting that having insurance alone does not guarantee access to 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,” said senior author Dr. Anitha John, 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.”
The study authors hypothesize that geographic disparities in access to adult congenital heart disease specialists play a key role. Patients in higher-income areas may have easier access to specialized centers and cardiologists trained in adult congenital heart disease. In contrast, those in under-resourced regions may lack local expertise, leading to gaps in care. The findings underscore the need for more specialists and better distribution of services across the country.
Dr. Michelle Gurvitz, a cardiologist at Boston Children’s Hospital and chair of the writing committee for the 2025 guideline, noted that many patients lose specialized care during the transition from pediatric to adult services. “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 research has limitations, including the inability to directly measure access to care, and the findings show associations rather than cause and effect. However, the implications are clear: expanding access to expert care, particularly in under-resourced regions, could profoundly improve survival and quality of life for adults with congenital heart disease. The American Heart Association’s 2026 Heart Disease and Stroke Statistics highlight congenital heart defects as one of the most common birth defects and a leading cause of death from a condition present at birth in the U.S.
Dr. John emphasized the need for systemic changes: “We also need more trained specialists in adult congenital heart conditions. These medical experts should be more evenly distributed across the country, particularly where congenital heart disease patients live and work. Additionally, we need better systems to help patients get referred to the right care throughout their lives. Expanding telehealth and improving insurance networks may also help to improve access.”
