Assessing Rare Disease Reimbursement Levels and Economic Burden on Patients in China

OBJECTIVES: China has established a comprehensive, multi-payer reimbursement system. This system relies on National Reimbursement Drug List (NRDL) as its foundation. Medical Assistance Programs (MAP) provide crucial support. City Customized Commercial Medical Insurance (CCCMI) is continuously under development to reduce the economic burden on patients. The purpose of this study was to assess the reimbursement level and economic burden for Chinese patients with rare diseases within the current reimbursement system, and to explore the challenges faced by policymakers and stakeholders.

METHODS: In this descriptive statistical analysis, Chinese reimbursement policies of 253 cities were reviewed to analyze the economic burden of urban and rural patients with 9 rare diseases with available medical treatments using the World Health Organization (WHO) standard method. The 9 rare diseases were included in outpatient chronic and special disease lists of most cities, within which 1-2 drugs with the highest market share in China for each disease area were selected for analysis.

RESULTS: There were 16 drugs available for targeted diseases. NRDL covered 10 of them, with an average reimbursement rate of 56%. Out-of-pocket (OOP) payments consumed more than 40% of patient's annual disposable household income (ADHI). Patients covered by CCCMI had secondary reimbursement after NRDL to further reduce OOP, but for 2 drugs it took ≥ 1 working year to pay the OOP. If patients qualified for MAP reimbursement, OOP for these 2 drugs could be further reduced. The remaining 6 non-NRDL drugs were covered by CCCMI and the OOP exceeded 500% of patient's ADHI, which required ≥ 15 working years for patients to fulfill the outstanding payments.

CONCLUSIONS: It is essential to optimize the existing Chinese healthcare reimbursement mechanism and enhance the coordination and supplement across various reimbursement levels to further reduce economic burden for patients with rare diseases in China.