青岛模式： 罕见病医疗保障制度的实践与展望  

The Practice of Qingdao Model of Medical Aid System for Rare Disease

作　　者：梁土坤 尚珂[2] 

机构地区：[1]一加一(北京)残障人文化发展中心,北京100077 [2]北京物资学院,北京101149

出　　处：《社会保障研究》2014年第3期64-73,共10页Social Security Studies

摘　　要：罕见病群体是一个不可忽视的庞大的社会群体。美国、欧盟、日本、中国台湾等国家和地区都出台了相关法律法规,以提高患者的药物可及性,改善其生存状况等。而到目前为止,我国依然没有罕见病的官方定义和相关法律法规。2012年,青岛市首开先河,建立了大病医疗救助制度,明确将罕见病纳入其覆盖范围之内,其基本上建立了罕见病医疗保障制度。本文将对青岛罕见病医疗保障制度的相关内容、特点、实施情况、发展方向等进行深入分析,以期为完善青岛市罕见病医疗保障制度,促进我国罕见病医疗保障制度的建立提供参考。There are a great number of People with rare diseases, which could not be ignored in society. In order to improve the patient＇s medication access and their living conditions, some countries and regions in the world, such as U. S. , EU, Japan, Taiwan, have introduced relevant laws and regulations. However, so far, there has been no official definition of rare diseases and related laws and regulations in China. Fortunately, last year, Qingdao City, initiated a medical aid system for serious diseases, the first of its kind, explicitly incorporating rare diseases within the scope of its coverage, and at this point it basically has established a medical security system for people with rare disease. This article will analyze the contents, features, implementation and developmental direction of the system for people with rare diseases in Qingdao , providing a reference to improving the system in qingdao, and promoting establishment of rare disease medical insurance system in China.

关 键 词：罕见病 大病医疗救助制度 青岛 

分 类 号：R197.1[医药卫生—卫生事业管理]