我国罕见病专项基金运行机制的建构与设计探讨

Discussion on the Construction and Design of the Operation Mechanism of the Special Fund for Rare Diseases in China

目的:对我国罕见病专项基金的运行机制进行分析探讨,为完善我国罕见病医疗保障体系提供理论借鉴。方法:采用二次文献综述、专家深度访谈、国内外经验调查等方法,结合卫生管理、医保管理和医药经济等学科理论,对罕见病专项基金的管理和运行机制进行分析,并提出对策建议。结果:我国罕见病专项基金的运行机制包含筹资、遴选、定价、监管和衔接等各个环节,可借鉴相关理论和国内外既有经验设计合理的运行机制,选择可行的落地途径。结论:我国罕见病专项基金的运行机制在理论上具有可行性,在具体实施过程中需要建立完善的制度并选择适宜的途径。

Objective:The paper analyzes and discusses the operation mechanism of the special fund for rare diseases in China,to provide theoretical reference for improving the healthcare security system for rare diseases in China.Methods:With the methods of secondary literature review,in-depth interviews with experts,domestic and foreign experience investigation,and the theories of health management,medical insurance management and medical economics,the management and operation mechanism of the special fund for rare diseases was analyzed,and countermeasures were put forward.Results:The operation mechanism of the special fund for rare diseases in China includes financing,selection,pricing,supervision and cohesion,etc.We can design a reasonable operation mechanism and choose a feasible solution by referring to relevant theories,domestic and foreign experience.Conclusion:The operation mechanism of the special fund for rare diseases in China is feasible in theory,and it is necessary to establish a perfect system and choose a suitable way during the implementation.