对罕见病药品可及性的认知及提高其制度保障的做法
Understanding about orphan drug accessibility andenhancement of institutional guarantee

运用罗尔斯的两个正义原则对罕见病药品可及性进行研究。发现罕见病药品的供应性短缺严重、可流通性极差、可负担性很低，严重影响了罕见病患者平等的生命健康权及医疗权的实现。需要完善医疗保障制度，建立多元筹资机制，建立健全罕见病药品保障制度及罕见病医药卫生信息系统，以提高罕见病药品可及性。
This article conducted researches on the accessibility of orphan drugs using the two principles of justiceput forward by John Rawls, and found some problems about orphan drugs such as being in short supply, poor negotiabilityand low affordability. All these factors blocked the realization of equal rights of life and health and equal medical rightsfor the patients with rare diseases. The accessibility of orphan drugs can be improved through perfecting medical securitysystem, establishing diversified financing mechanisms, improving security system for orphan drugs and healthcareinformation system of rare diseases