Adults with congenital heart disease living in states with lower household incomes and limited health insurance coverage may face higher risks of death and disability, 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 and U.S. Census data from 1990 to 2021, is one of the first to examine the connection between state-level socioeconomic factors and outcomes for nearly 300,000 adults with congenital heart disease aged 20 and older.
Over the past three decades, advances in surgical and catheter-based treatments have enabled more children with congenital heart disease to survive into adulthood. However, these individuals require lifelong specialized cardiac care, as recommended by evidence-based guidelines from the American Heart Association and the American College of Cardiology. The new research suggests that access to such specialized care may be uneven across the United States, with significant implications for survival and quality of life.
The study found that as median household income increased in a state, the death rate for people with congenital heart disease decreased. Notably, the relationship between death rates and income levels was stronger than the connection between death rates and the percentage of residents without insurance. This suggests that having health insurance alone does not guarantee access to the specialized care needed for congenital heart disease, possibly due to differences in insurance types, high out-of-pocket costs, or geographic barriers.
Senior author Dr. Anitha John, medical director of the Washington Adult Congenital Heart Program at Children's National in Washington, D.C., emphasized that insurance alone does not explain the disparities. “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,” she said. The study authors hypothesize that communities with higher income levels and more insured residents may have easier access to adult congenital heart disease cardiologists and specialized treatment centers.
The findings underscore the need for expanding access to expert care, particularly in under-resourced regions. Dr. John called for more trained specialists in adult congenital heart conditions to be evenly distributed across the country, as well as better systems to help patients get referred to appropriate care throughout their lives. She also highlighted the potential of telehealth and improved insurance networks to bridge gaps in access.
Dr. Michelle Gurvitz, 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 they transition from pediatric to adult care. She added that the new guideline outlines when to seek expert assistance and how specialists can collaborate with other healthcare providers to enhance access. “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 analysis reviewed data on death rates and disability-adjusted life years—a measure of healthy life years lost due to a condition—alongside state-level income and insurance data from the U.S. Census Bureau. The researchers caution that the findings show associations, not cause and effect, and that factors like access to care could not be directly measured. Nevertheless, the results highlight profound disparities that warrant further investigation and action.
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. Ensuring equitable access to specialized cardiac care for all adults with congenital heart disease, regardless of where they live or their economic status, could play a profound role in improving survival and quality of life.
