New Study Reveals a Troubling Link Between Income and Outcomes in Adult Congenital Heart Disease

Adult congenital heart disease, or ACHD, refers to structural heart defects that are present from birth and persist into adulthood. Thanks to advances in pediatric cardiology and cardiac surgery over the past several decades, the vast majority of children born with congenital heart disease now survive into adulthood, creating a growing population of adults living with these complex conditions. In the United States alone, a new study published in the Journal of the American Heart Association estimates that more than 292,000 adults aged 20 and older were living with congenital heart disease in 2021.

But survival is not the whole story. A new analysis using data from the Global Burden of Disease study, one of the most comprehensive health databases in the world, has found that where a person lives and their economic circumstances have a significant impact on whether they thrive or struggle with this condition. The findings raise important questions about health equity and access to specialized cardiac care for one of the fastest-growing populations in adult cardiology.

What the Study Examined

Investigators conducted a secondary analysis of Global Burden of Disease data covering all 50 U.S. states from 1990 to 2021, focusing specifically on adults aged 20 and older with congenital heart disease. They looked at two key outcomes: mortality, meaning deaths related to adult congenital heart disease, and disability-adjusted life years, a measure that captures both years of life lost to premature death and years lived with significant disability or health impairment. They then cross-referenced those outcomes with each state’s median household income and percentage of uninsured residents using U.S. Census Bureau data.

What the Team Found

The results revealed a striking and troubling pattern. In 2021 there were approximately 1,074 adult congenital heart disease-related deaths and more than 62,000 disability-adjusted life years lost across the United States. When investigators mapped those outcomes against economic data, a clear picture emerged: States with lower median household incomes had significantly higher rates of death and disability from adult congenital heart disease.

The relationship between income and mortality was strong, with a correlation coefficient of 0.62, meaning that lower household income was a powerful predictor of worse outcomes. West Virginia, which had both the highest mortality rate and the highest disability burden in the study, also had one of the lowest median household incomes in the country at just over $51,000.

The relationship between insurance status and mortality was also present but somewhat less pronounced, with states where a higher percentage of residents were uninsured also showing higher ACHD-related mortality, though that correlation was weaker than the income relationship.

“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 lead investigator Anitha John, M.D., Ph.D., 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. In many cases, specialized care may not be available in their area at all. 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.”

There was encouraging news embedded in the data as well. Overall mortality and disability rates from adult congenital heart disease have declined across the United States from 1990 to 2021, reflecting real progress in how this condition is diagnosed, managed and treated over time.

Why This Matters for Patients

The team concluded that ensuring adequate access to specialized care for this population is not just a clinical priority but a health equity imperative. For patients living in states with fewer resources or less access to specialized cardiac care, the gap between what medicine can offer and what they are actually receiving may be costing lives.

“Understanding how social and economic factors can influence survival and outcomes is essential,” said John. “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 for people who have congenital heart disease.”