OBJECTIVES: Hemophilia is a rare hereditary bleeding disorder caused by deficiency of a coagulation factor. Patients with hemophilia usually experience repeated bleeding which will partly lead to severe long-lasting clinical consequences. Life-long and standard treatment for hemophilia is needed, which result in substantial economic burden on patient families. In China, approximately 39,000 patients live with hemophilia, while less consideration was given to economic burden of hemophilia. This research aims to determine the economic burden of patients with hemophilia in China from societal perspective.

METHOD: A nationwide, online, cross-sectional survey was conducted with collaboration with the biggest hemophilia patient organization in China in July 2021. Data on demographic characteristics, healthcare utilization and expenses, healthcare-related transportation expense and loss of labor productivity were obtained from questionnaires completed by patients or their caregivers.

RESULTS: A total of 694 patients were included in the analysis, among which 25.1% of patients had experienced hospitalization at least once last year and 14.5% of patients or their caregivers had missed work due to hemophilia in the past week. The average annual direct economic burden per patient associated with hemophilia was $9425, with out-of-pocket drug expenses accounting for 89.7%. The annual loss of labor productivity was estimated as $578. 80.62% of hemophilia patients families encountered catastrophic health expenditure, meaning that annual hemophilia related costs exceeded 40% of their annual non-food household expenditure. The survey also represented that financial difficulty with patient families resulted in inadequate drug use and healthcare utilization.

CONCLUSION: Hemophilia is associated with a substantial economic burden for hemophilia patients in Chinese setting. More measures should be taken to enhance health security for hemophilia patients to further relieve their economic burden.