Presentation (CTI)

OBJECTIVES: To evaluate the current health care policy initiatives aimed at supporting patients with rare and intractable diseases in Japan.
METHODS: A review was conducted of government websites and gray literature searches to identify measures aimed at alleviating the economic burden associated with rare or intractable diseases in Japan. Searches were conducted in Japanese.
RESULTS: Several policy initiatives were uncovered to help support patient financial burden from rare and intractable diseases. The pediatric chronic disease subsidy has added 5 new disease areas in the last 6 years and the rare disease subsidy has added 7 new diseases. In terms of disease type for the pediatric chronic disease subsidy, endocrine disorders had the highest number of reported cases in 2018 (23.6%). For the rare disease subsidy, Parkinson disease had the highest number of patients in 2023 (13.6%). The high cost medical expenditure subsidy policy was just updated (Dec 25, 2024) to expand the income categories (effective Aug 2026) and increase the threshold before a patient can receive the subsidy (effective Aug 2025); effectively increasing their total co-payments. A further adjustment will be made in Aug 2027. These changes were made to reduce the insurance premium burden on the working population. To government stated the aim is to address the increase in medical expenses and adjust the balance of burden across generations. The policies on aggregated medical expense subsidy and the medical fee exemption have remained the same for the last 6 years.
CONCLUSIONS: There are several policies to support the financial burden of patients with rare and intractable diseases in Japan. The increase in the number of conditions qualifying for pediatric chronic disease subsidy and rare disease subsidy is promising, however, the recent changes to the high-cost medical expenditure subsidy will put a greater burden on patient out of pocket costs.