OBJECTIVES : ADPKD is one of the most common life-threatening inherited kidney diseases characterized by cysts in kidneys, eventually leading to kidney failure. Given the life-long progressive nature of the disease it is expected to carry a substantial economic burden, however there is limited evidence on its societal economic impact. Study objective was to estimate the direct and indirect costs associated with ADPKD in the United States (US).

METHODS A prevalence-based approach using data from scientific literature, and governmental and non-governmental organizations was employed to estimate direct healthcare costs (i.e., medical services, prescription drugs), direct non-healthcare costs (i.e., research and advocacy, donors/recipients matching for kidney transplants, transportation to/from dialysis centers), and indirect costs (i.e., patient productivity loss from unemployment, reduced work productivity, and premature mortality, caregivers’ productivity loss and healthcare costs). Costs attributed to ADPKD were calculated as the difference between costs incurred over a one-year period by individuals with ADPKD and the US population. Sensitivity analyses were performed to assess robustness of estimates and account for variability in published estimates.

RESULTS The estimated total costs attributed to ADPKD in 2018 ranged from $7.3 to $9.6 billion in sensitivity analyses, or $51,970 to $68,091 per individual with ADPKD. In the base scenario, direct healthcare costs accounted for $5.7 billion (78.6%) of the total $7.3 billion costs – mostly driven by patients requiring renal replacement therapy ($3.2 billion; 43.3%) – and indirect costs accounted for $1.4 billion (19.7%) – mostly driven by productivity loss due to unemployment ($783 million; 10.7%). Total excess direct non-healthcare costs were estimated at $125 million (1.7%).

CONCLUSIONS ADPKD is associated with a substantial economic burden, attributed principally to direct healthcare costs, the majority of which are incurred by payers. Interventions to slow down the progression of ADPKD have the potential to reduce the economic burden of ADPKD.