Catastrophic cost among multi-drug resistant tuberculosis patients in Japan: first national survey

Background Multi-drug resistant tuberculosis (MDR-TB) remains a major global health concern, often contributing substantially to financial hardship among patients and their households. World Health Organization (WHO) defines catastrophic TB cost as a total cost of TB diagnosis and treatment above 20% of household’s annual income. This study aimed to quantify direct and indirect costs associated with MDR-TB treatment and determine the proportion of affected households experiencing catastrophic expenditures for the first time in Japan. Methods This was a cross-sectional study following the WHO protocol for TB cost survey. Eligible patients were recruited via medical facilities, and were interviewed face-to-face, using the modified WHO questionnaire. Direct and indirect costs were calculated for pre-diagnosis phase, standard treatment phase and MDR-TB treatment phase, and the proportions of those facing catastrophic cost were estimated. Participants were also asked about effect on employment/study and coping strategies. Results A total of 27 participants were enrolled across seven facilities. The mean age was 45.2 years (± 20.4; range 20–83), and 48.1% were male. Among the 23 participants for whom cost estimation was possible, the mean total cost was 1,164,856 JPY (7,766 USD). Indirect costs accounted for 53.4% of total costs (mean 622,174 JPY). MDR-TB treatment medical costs constituted the largest direct cost component (27.1%, mean 315,766 JPY). Mean pre-TB annual household income was 3,421,565 JPY (22,811 USD). Twelve of 23 participants experienced catastrophic costs. Prior to diagnosis, 16 were employed, among whom five became unemployed. Participants also reported multiple coping strategies, including reducing non-food expenditure and food expenditure. Five participants received financial support or loans from family or acquaintances. Borrowed amounts ranged from 320,000 to 2,000,000 JPY (2,100–13,300 USD). Conclusions Catastrophic costs affected more than half of households despite universal health insurance and a TB-specific public subsidy framework in Japan. The burden was driven by direct medical costs for MDR-TB treatment and by income loss during prolonged treatment. Targeted reforms are needed, including extension of the TB-specific subsidy to encompass all core MDR-TB drugs, accelerated adoption of shorter regimens, and strengthened income protection for economically vulnerable patients.