The aim of this study is to estimate annual, per patient, health care costs for congenital ichthyoses (CI). We conducted a cost analysis through an online survey posted on the Foundation for Ichthyosis and Related Skin Types Website. We assessed cutaneous disease severity, via the previously validated Congenital Ichthyosis Severity Index (CISI), demographics, and CI type. We estimated direct health care costs: prescription and over-the-counter medications, outpatient visits, and emergency department and hospital visit costs; and indirect costs: earnings lost owing to absences from work because of CI-related illness. The CI subjects of our study (n=224) consumed a mean (SD) of Dollars 3,192 (Dollars 7,915) annually. Direct costs accounted for 90%, whereas indirect costs accounted for 10%. These costs resulted in an estimated annual cost of Dollars 37 MM/year (excluding ichthyosis vulgaris) of which Dollars 17 MM is borne out-of-pocket by patients. Depending on the CI diagnosis, patients were responsible for 30-51 cents of every dollar of mean annual medical care costs. Our estimated annual CI costs are comparable to cutaneous lymphoma. More effective treatments for CI would help minimize this burden. Traditional insurance products do not appear to substantially alleviate the financial burden of disease, as a significant amount is from out-of-pocket expenses.
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