“健康中国”背景下,我国正在逐步推进完善罕见病用药保障机制,这既是我国医疗保障高质量发展的内在需求,也是进一步深化医改的一项重点任务。本文通过梳理我国当前罕见病费用保障的政策与地方试行的改革现状,分析罕见病费用保障现实情况与人民群众就医需求的“三对”不平衡关系。最后结合国情提出医保做好“两项基础工作”、发挥“三个作用”的罕见病费用综合保障机制完善路径。

Under the background of Healthy China, China is gradually promoting the improvement of drug guarantee mechanism for rare diseases, which is not only the inherent demand of high-quality medical insurance development in China, but also a key task of further deepening the reform of medical system. This paper analyzes the three pairs of unbalanced relationship between the reality of rare disease expense guarantee and the people's demand for medical treatment and insurance by analyzing the current policy of rare disease expense guarantee and the situation of local reform. Finally, based on the national conditions, this paper puts forward the direction of improving the comprehensive guarantee mechanism of rare disease expenses, which is to “do two basic work well” and “play three roles”.