Impact of Severe Hemophilia on Costs and Quality of Life in South American Men: Findings From the CHESS LATAM Study

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.