Abstract

Objectives

Severe hemophilia is a rare bleeding disorder, associated with high socioeconomic costs and burden. The “Cost of Hemophilia in Latin America: A Socioeconomic Survey” (CHESS LATAM) study aimed to quantify this burden across 4 Latin American countries; Argentina, Brazil, Chile, and Colombia.

Methods

Demographic, clinical, and medical data of patients were captured through their hemophilia specialists during the period between September 2020 and May 2021. Direct medical resource use was captured by a physician survey, and direct nonmedical and indirect costs were captured via a patient survey. Health-related quality of life was also captured from a patient perspective. Local country-specific unit costs were applied to resource use to calculate per-patient costs over a 12-month period.

Results

Physician data were captured for a total of 830 patients. For a subsample, 153 (18% of the sample) associated patient surveys were completed. Annual cost of severe hemophilia across the 4 countries was estimated at less than US$ 104 000 (International$ 234 237) per patient. Factor replacement therapy accounted for the majority of costs (up to 99%). Indirect costs were driven by patient and caregiver work loss.

Conclusions

The results of the CHESS LATAM study highlight the large burden faced by patients with severe hemophilia A and B in Latin America. Despite the dominating treatment costs, the indirect impact of hemophilia on the patients and those who care for them was still substantial and should not be dismissed.