The Household Burden of Sleeping Sickness: Out-of-Pocket Costs for Diagnosis and Treatment

Purpose: This study estimated out-of-pocket (OOP) expenses associated Human African Trypano-somiasis (HAT) care, in the Democratic Republic of the Congo (DRC) and explored how they influ-enced care-seeking behavior and participation in HAT control, aiming to inform effective and finan-cially accessible elimination strategies. Methods: A sequential mixed-methods study was conducted using 16 semi-structured interviews and 6 focus group discussions, followed by a structured survey of 444 recently tested participants across 6 health zones. Medical and non-medical expenditures were collected by health structure type and screening strategy (active vs. passive). Catastrophic health expenditure (CHE) was defined as OOP costs, excluding food, exceeding 10% or 25% of annual household income. Results: Payments at health facilities, transport costs and long distances delayed care-seeking, par-ticularly in passive screening (PS). Active screening (AS) was associated with minimal OOP, 93% of visits were cost-free, with a median OOP of 0.76 USD among those incurring costs. PS generated higher expenses, only 12% of PS visits were cost-free, with a median OOP of 9.08 USD among those with expenditures. Among confirmed cases, median OOP was lower through active (9.84 USD) than PS (24.23 USD). Nearly 90% of confirmed cases sold assets or borrowed money to cover expenses. CHE was uncommon under average household income(<4%), however 36% of passively detected cases exceeded the 10% threshold under minimum-wage income assumptions. Conclusion: Despite free diagnosis and treatment, accessing HAT care in rural, low-resource foci in the DRC still imposes a substantial financial burden. Reaching elimination targets and ensuring eq-uitable access will require minimizing indirect costs and logistical barriers to screening and diagno-sis. As active screening declines, routine health systems assume greater surveillance responsibilities, reducing indirect costs and logistical these barriers will be critical to sustain coverage and maintain an effective and equitable HAT elimination strategy.