OBJECTIVES: The medical expense subsidy for intractable diseases is part of the public health system for economic aid among patients with intractable diseases in Japan. We aimed to clarify the actual status of the medical expense subsidy for intractable diseases and quality of life (QOL) between Japanese patients with inflammatory bowel disease (IBD) who receive the subsidy and patients who are ineligible for this support.

METHODS: This nationwide survey was conducted in Japan, using a web-based questionnaire. We surveyed 200 patients with ulcerative colitis (UC) and 100 patients with Crohn’s disease (CD). The survey was conducted until data were collected for a predetermined number of patients. Survey questions covered age, sex, marital status, income, medical expense subsidy status, actual treatment status, and EuroQol-5 Dimensions-5 Levels (EQ-5D-5L), which was used to assess QOL.

RESULTS: The proportion of responders diagnosed with CD and UC who were ineligible to receive the subsidy was 11.0% and 34.0%, respectively. Median EQ-5D-5L scores were not significantly higher in the non-subsidy group than the subsidy group (0.87:0.78–1.00 vs. 0.82:0.75–0.79, P=0.282) in CD-diagnosed responders. In UC-diagnosed responders, scores were significantly higher in the non-subsidy group than in the subsidy group (0.89:0.87–1.00 vs. 0.89:0.78–1.00, P=0.003). Additionally, the introduction of biologic therapies was 8-fold higher in responders with CD than in those with UC (60.0% vs. 7.5%, P<0.001).

CONCLUSIONS: In the present study, we demonstrated the health-related utility of patients with IBD, according to status of the intractable disease medical expense subsidy and socioeconomic factors. The introduction of biologic therapies was related to subsidy status. Patients who do not have active disease and do not receive active treatment have been excluded from the current subsidy system. We consider that the current subsidy system has not decreased QOL for patients with IBD in Japan.