OBJECTIVES: To evaluate the annual costs of health service, household and transportation involved in hemophilia A care per patient, and to estimate its economic burden in Brazil.

METHODS: Data were analyzed retrospectively from patients followed throughout 2022 at 3 referral blood centers of the Brazilian Unified Health System. The Time-driven Activity-based Costing (TDABC) method was used to evaluate the direct costs. The indirect costs of lost productivity and absenteeism were estimated based on telephone interviews. The health service costs include medications consumed, consultations and procedures performed at the blood center. Household costs include family expenses with medications, private health insurance, consultations with specialists outside the referral blood center and the indirect costs. Transportations costs considered the visits to the blood center. Descriptive analyses are shown in the cost per patient unit throughout a period of one year. To estimate the burden, the median cost was multiplied by the number of patients in Brazil obtained from a report of the national registry of hemophilia, the Hemovida Web Coagulopatias. The costs are expressed in Brazilian national currency (R$).

RESULTS: Data from 140 patients were included in the analyses, 95% of these with severe hemophilia A, mean (SD) age of 19.35 (14.35) years. The median health service costs per patient per year was R$ 450.113 (R$ 449.577 medications, R$ 609 consultation, R$ 170 procedures), household costs were R$ 2.094, and transportation costs were R$ 592. The burden considering 11.141 patients is estimated at R$ 5,01 billion.

CONCLUSIONS: Demonstrating the composition of cost to manage hemophilia A is important for the families to understand the costs involved and for managers to identify priorities and allocate resources more efficiently.