Understanding the occurrence and determinants of catastrophic costs of rifampicin resistant tuberculosis in South Africa to inform a patient-centered care program

Background: Tuberculosis (TB) is a poverty-related disease, with the burden primarily occurring in vulnerable populations with diminished socioeconomic means. As such, patients undergoing treatment for rifampicin resistant TB (RR-TB) often incur catastrophic costs. Patient costs related to a TB treatment episode are classified as catastrophic costs if they exceed 20% of the annual household income before the patients’ TB diagnosis. Understanding the costs incurred by patients undergoing rifampicin resistant TB (RR-TB) treatment is important for shaping a comprehensive patient-centered approach to the management of drug resistant TB. Methods: To understand how RR-TB treatment affects the economic situation of RR-TB patients in South Africa, we nested an economic evaluation in the SMARRT phase IV randomized control trial, assessing whole genome sequencing-guided individualized RR-TB treatment in the Free State province of South Africa. Direct and indirect cost data were collected using telephone interviews at three timepoints: baseline, 6 months after the start of treatment, and at the end of treatment. Multiple imputation was performed to prevent biases introduced by missing data. Results: Of 200 trial participants, 168 could be included in the analysis. Similar to the population of the Free State Province (2022 census data), most patients with RR-TB had some secondary education (88%), lived in townships (59%) in a brick or cement block house (88%) and always had access to electricity (85%). Half (53%) of all patients received financial support through a governmental “TB grant”. On average, the direct and indirect costs of RR-TB treatment represented half (mean 51%) of the patient's pre-TB annual household income. The largest direct cost component was food followed by travel to attend clinic visits. The unemployment rate rose from 49% at RR-TB diagnosis to 80% at the end of RR-TB treatment, primarily due to the patients feeling too sick to work. The mean household salary income declined during RR-TB treatment by almost 50%. To cope, few (0.6%) patients had to sell personal items, but several (14%) had to borrow money. Depending on assumptions for imputation, 40% to 60% of RR-TB patients experienced catastrophic costs. Discussion: Despite services and medications being free of charge, RR-TB treatment led to a 30% increase in unemployment, a 50% decrease in income, and more than 40% of patients experienced catastrophic costs. Enhancing social protections for patients receiving treatment for RR-TB, particularly, food packages, may be crucial for reducing the catastrophic costs for patients with drug-resistant tuberculosis. Conclusions: Treatment for RR-TB poses a substantial economic burden on patients. A comprehensive patient-centered approach with social protection interventions in addition to medical treatment should be provided.