目的: 了解国家医保谈判药品中罕见病用药在各省份的配备情况,对国家医保谈判药品政策可及性及药品落地情况进行分析,为政策完善提供理论依据。方法: 收集国家医保服务平台协议期内20种罕见病用药的全国配备数据,分析这20种药品在各省份医院和药房分布情况。结果: 广东、江苏、浙江、山东、河南5个省份医院和药房药品配备情况较好,落地医院和药房数量较多,20种罕见病用药均有落地;西藏、海南、宁夏、广西、青海5个省份落地医院和药房数量均较少,未落地药品数量分别为14种、8种、8种、6种、5种。从药物剂型来看,口服制剂药房落地情况更好,输注药品医院落地情况优于药房落地情况。结论: 20种罕见病用药在全国落地情况差异较大,经济状况较好、医保基金支付能力更强、医疗资源丰富的省份以及“双通道”政策执行较好省份,其药品落地情况相对更好。

Objective: The paper attempts to understand the allocation of rare diseases negotiation drugs in various provinces (cities), and analyze the accessibility and implementation of negotiation drug policies to provide theoretical basis for policy improvement. Methods: The paper collects the allocation data of 20 orphan drugs in national medical insurance service platform, and analyzes the distribution of these drugs in hospitals and pharmacies. Results: Hospitals and pharmacies in Guangdong, Jiangsu, Zhejiang, Shandong and Henan supply these orphan drugs more than other provinces (cities), with 20 orphan drugs available. Hospitals and pharmacies in Tibet, Hainan, Ningxia, Guangxi and Qinghai supply relatively less orphan drugs, and the number of unavailable drugs is 14, 8, 8, 6 and 5 respectively. From the perspective of drug dosage forms, oral preparation is better equipped in pharmacies, and hospitals are more equipped with infusion drugs than pharmacies. Conclusion: There are a great difference between 20 kinds of rare disease drugs, and provinces with better economic conditions, strong payment ability of medical insurance fund, abundant medical resources, and implementation of “dual-channel” policy are relatively better equipped with orphan drugs.