Income and Insurance Gaps Widen Death Risk for Adults with Congenital Heart Disease

A groundbreaking study published in the Journal of the American Heart Association reveals that adults with congenital heart disease living in U.S. states with lower household incomes and limited health insurance coverage face significantly higher rates of death and disability. Researchers analyzed data from the Global Burden of Disease Study and U.S. Census from 1990 to 2021, focusing on nearly 300,000 adults aged 20 and older. The findings, announced via NEWMEDIAWIRE, suggest that disparities in access to specialized cardiac care—not just insurance status—are a major driver of these outcomes. Senior author Dr. Anitha John, medical director of the Washington Adult Congenital Heart Program at Children’s National, emphasized that "insurance alone doesn’t guarantee access to care" and that geographic and economic barriers often prevent patients from seeing adult congenital heart disease specialists.

The study found that as median household income increased, death rates decreased, and the link between income and survival was stronger than the link between insurance rates and survival. This indicates that simply having insurance may not ensure access to specialized care if networks are limited or out-of-pocket costs are high. Dr. John highlighted the need for more trained specialists and better referral systems, as well as expanded telehealth and improved insurance networks. The 2025 ACC/AHA/HRS/ISACHD/SCAI joint Guideline for the Management of Adults With Congenital Heart Disease outlines strategies for specialist collaboration to enhance access. Dr. Michelle Gurvitz, an American Heart Association volunteer expert, noted that many patients lose specialized care during the transition from pediatric to adult care, and that location and insurance issues further limit access.

Congenital heart disease is the leading cause of death from a birth defect in the U.S., and survival into adulthood has improved dramatically over the past 30 years due to better treatments. However, lifelong specialized cardiac care is essential. This research underscores that socioeconomic factors and access to expert care profoundly impact outcomes. Expanding access to specialized care, particularly in under-resourced regions, could improve survival and quality of life for millions of 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 globally. Further research is needed to understand the full impact of these disparities.