The household burden of sleeping sickness: out-of-pocket costs for diagnosis and treatment

Purpose This study estimated out-of-pocket (OOP) expenses associated with Human African Trypanosomiasis (HAT) care in the Democratic Republic of the Congo (DRC) and explored how they influenced care-seeking behaviour and participation in HAT control, aiming to inform effective and financially accessible elimination strategies.Methods A sequential mixed-methods study was conducted using 16 SSIs and six focus group discussions, followed by a structured survey of 444 recently tested participants across six 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, particularly in passive screening (PS). Active screening (AS) was associated with minimal OOP, 93% of visits were cost-free, with a median OOP of US$0.76 among those incurring costs. PS generated higher expenses, only 12% of PS visits were cost-free, with a median OOP of US$9.08 among those with expenditures. Among confirmed cases, median OOP was lower through active (US$9.84) than PS (US$24.23). 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 equitable access will require minimising indirect costs and logistical barriers to screening and diagnosis. As AS declines and routine health systems assume greater surveillance responsibilities, reducing indirect costs and logistical barriers will be critical to sustain coverage and maintain an effective and equitable HAT elimination strategy.