• The non-elderly lifetime burden of total medical costs attributable to sickle cell disease was $1.7 million

  • Patients incurred $44,000 in out-of-pocket costs due to sickle cell disease over their non-elderly lifetimes

Sickle cell disease (SCD) is a severe monogenic disease associated with high morbidity, mortality, and a disproportionate burden on Black and Hispanic communities. Our objective was to estimate the total healthcare costs and total out-of-pocket costs attributable to SCD among commercially insured individuals over their non-elderly lifetimes (0-64 years of age). We constructed a retrospective cohort of individuals with diagnosed SCD using Truven Health Marketscan commercial claims data from 2007-2018, compared with matched controls from the Medical Expenditure Panel Survey. We estimated Kaplan-Meier sample average costs using previously reported survival curves for SCD and controls. 20,891 individuals with SCD and 33,588 controls were included in our analysis. The SCD sample had a mean age of 25.7 (SD 17.4) years; 58.0% were female. Survival-adjusted costs of SCD peaked at age 13-24 years and declined at older ages. There was no significant difference in total medical costs or OOP costs between the sexes. SCD-attributable costs over 0-64 years of age were estimated to be $1.6 million (95%CI: $1.3M, $1.9M) and $1.7 million (95% CI: $1.4M, $2.1M) for females and males with SCD, respectively. The corresponding OOP estimates were $42,395 (95%CI: $34,756, $50,033) for females and $45,091 (95% CI: $36,491, $53,691) for males. These represent a 907% and 285% increase in total medical and OOP costs over controls, respectively. Although limited to the commercially insured population, these results indicate that the direct economic burden of SCD is substantial and peaks at younger ages, suggesting the need for curative and new medical therapies.

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