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 Trypanoso-miasis (HAT) care, in the Democratic Republic of the Congo (DRC) and explored how they influenced care-seeking behavior and participation in HAT control, aiming to inform effective and financially 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, particularly 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 equitable access will require minimizing indirect costs and logistical barriers to screening and diagnosis. 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.

What is already known on this topic

• Despite free-of-charge HAT screening and treatment in DRC, patients still incur substantial out-of-pocket costs (transport, food, informal/uncovered fees).

• These OOP costs deter timely care-seeking and screening participation, reducing or delaying treatment uptake and therefore threaten elimination efforts, yet no prior study had compared financial burden across active and passive screening strategies.

What this study adds

• Contemporary, strategy-specific OOP estimates for gHAT in rural DRC, demonstrating that passive screening generates higher costs than active screening: 93% of active screening visits were cost-free versus only 12% in passive screening, with confirmed cases facing median OOP of $9.84 and $24.23 respectively.

• Evidence that costs escalate sharply with diagnostic delay — reaching a median of $141 for cases diagnosed at a fourth visit — and that nearly 90% of confirmed cases resorted to selling assets or borrowing to cover expenses, with 36% of passively detected cases exceeding cata-strophic expenditure thresholds under minimum-wage income assumptions.

• A characterization of how financial barriers shape the full care-seeking pathway, from initial symptom response through diagnosis and treatment, including reliance on pharmacies and primary care facilities unable to diagnose gHAT, postponement of care in anticipation of mobile teams, and the deterrent effect of anticipated costs even when screening is nominally free.

How this study might affect research, practice or policy

• Aims to make OOP costs (transport, food, uncovered fees) an agenda item in stakeholder meetings and community sensitization, including transparent communication of expected costs to reduce uncertainty as a barrier to care-seeking.

• Programme design should consider maintaining mobile active screening in rural, low-income foci where passive care pathway costs are highest, and target support measures — such as transport assistance and non-medical cost coverage during hospitalization — toward minimum-wage and asset-poor households most vulnerable to catastrophic expenditure.

• As elimination progresses and passive surveillance assumes greater importance, research is needed on strategies to improve uptake and reduce financial barriers, including transport vouchers, community-level incentives, and decentralization of diagnostic capacity to primary care facilities and pharmacies where patients already seek care.