典型国家和地区罕见病用药保障模式比较及启示  

Comparison of Drug Security Models of Rare Diseases in Typical Countries and Regions and Its Enlightenment to China

作　　者：李乐乐 何晓彤 陈湘妤 李怡璇 

机构地区：[1]中国人民大学劳动人事学院,北京100872

出　　处：《中国医疗保险》2022年第11期29-34,共6页China Health Insurance

基　　金：中国人民大学科研项目“血友病患者医疗资源消耗与保障模式”(2021K20838)。

摘　　要：健康是促进人类社会全面发展的必要条件,作为重点特殊人群,罕见病患者的用药保障不仅是一个医学问题,更是社会、经济和人权问题,构建符合中国国情的罕见病用药保障体系是实现全民健康的重要保障。本文通过对比典型国家和地区的罕见病用药保障模式,从法律法规、筹资方式、支付方式、管理机构和社会支持五个维度对典型模式进行梳理,为完善我国罕见病用药保障体系提出对策建议。Health plays an indispensable role in promoting all-round development for human beings.Medication security for patients with rare diseases,one of the special groups,is not only a medical issue,but also a social,economic and human rights issue.The construction of a healthcare security system for rare diseases in China is an inevitable step to achieve universal health.In this paper,we compare the rare disease drug security systems in typical countries and regions from aspects of laws and regulations,financing methods,payment methods,management organization and social support,and put forward suggestions for improving the drug security system of rare diseases in China.

关 键 词：罕见病 罕用药 用药保障 政策建议 

分 类 号：F840.684[经济管理—保险] C913.7[社会学]