The economic burden of complex CHD in the United States

Abstract

In the United States, about 1 in 100 children are born with a CHD, with complex cases requiring intensive, lifelong care. Despite medical severity, little data exist on economic burden, driving low impact scores in federal research funding applications, a lack of specific funding appropriations, and minimal research investment. Here, the financial and economic impact was quantified by identifying direct, indirect, and mortality costs of six complex CHDs and compared to two common cardiovascular diseases: coronary heart disease and congestive heart failure. Despite lower prevalence, complex CHDs exert disproportionate, often invisible financial burdens on families and the healthcare system. Annually, per patient, direct and indirect costs of complex CHDs are four times higher than coronary heart disease and eight times higher than congestive heart failure. The average lifetime direct and indirect cost for complex CHDs is $2.1 million per patient-nearly 44 times that of congestive heart failure. 31% of lifetime costs for complex CHDs are incurred in the first five years of life with families paying an average of $190,000 out-of-pocket. Many caregivers are forced to reduce employment hours, change jobs, or completely withdraw from the labour force. The annual national cost of complex CHDs is $74 billion, and the total lifetime economic impact exceeds $3.35 trillion. Systemic under-recognition has led to chronic underinvestment in research and stagnant patient outcomes. The biomedical community can catalyse an interdisciplinary response from research institutions, policymakers, and clinical systems to alleviate the economic and human toll of complex CHDs.

Keywords: Complex CHD; direct costs; economic burden; indirect costs; mortality costs; single ventricle.