摘要
我国罕见病患人群的医疗保障问题一直处在边缘地位。本文以黑龙江省为例,梳理其现行罕见病医疗保障制度及其主要问题,是医疗费用个人负担部分较大、对孤儿药生产的鼓励力度小、获取病患信息的途径少、缺少病例集中与合作交流的平台;就此提出将成熟罕见病纳入商业保险制度范围并成立罕见病保障基金、建立孤儿药自主研发鼓励制度并加强药物可及性、完善医疗保障信息获取途径、建立完善的地方性罕见病诊治中心等改进建议。
There are a large number of patients with rare diseases in China, but the medical security for them has been marginalized. Taking Heilongjiang province as an example, this paper sorts out the current medical security system for rare diseases in Heilongjiang province and summarizes the existing main problems: personal burden of medical expenses for rare diseases is heavy, little encouragement is given to orphan drug production, access to rare disease information is limited, and rare diseases lack a platform for case concentration and cooperation. In view of the aforementioned problems, improvement suggestions are put forward: mature rare diseases will be included in commercial insurance system and a rare disease protection fund will be established, an incentive system for indepen. dent research and development of orphan drugs will be established to enhance drug access, the access to medical se. curity information for rare diseases will be improved, and a complete center for the diagnosis and treatment of en. demic rare diseases will be established.
作者
何朗歌
姜鑫
He Langge;Jiang Xin
出处
《医学与法学》
2019年第5期44-47,共4页
Medicine and Jurisprudence
基金
哈尔滨医科大学大学生创新创业训练计划项目“黑龙江省罕见病病人医疗保障现状调查研究”（项目编号：201810226131）
哈尔滨医科大学创新科学研究课题“我国孤儿药激励性保护机制研究”（项目编号：2017RWZX19）的阶段性成果
关键词
罕见病
罕见病医疗保障体系
孤儿药
rare disease
medical security system for rare disease
orphan drug
