Abstract

Objective To explore a medical insurance model for rare diseases and orphan drugs applicable in China.Methods Eleven rare diseases from six disease systems and thirty-five orphan drugs covered were pinpointed for comparative analysis of their present coverage in various medical insurance systems in China.Results The coverage of 35 orphan drugs in the national essential drug list(2009)and the national essential drug list(2012)is 0 and 37.1% respectively; the coverage in the national essential insurance medicine list is 54.3% (19 types),and the average coverage in the medicine list for the New Rural Cooperative Medical Insurance Scheme is 33.6%.The study found insufficient rare diseases included in the Basic Medical Insurance Schemes in general.Conclusion The coverage of basic medical insurance for rare disease patients is low in China.In this regard,such measures should be taken to mitigate the economic burden for these patients,namely expanding the coverage of reimbursement list of orphan drugs,building the special reimbursement system of rare diseases and orphan drugs and improving the medical rescue system for rare diseases in China and their medical care level. Key words: Rare disease; Orphan drug; Medical insurance; Medicine list; Coverage

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