目的: 从生命健康权的角度出发,基于救援规则和国内外经验,提出新的罕见病用药评价指标。方法: 利用文献研究法、比较分析法系统梳理国内外有关生命健康权、卫生技术评估、罕见病用药医疗保障经验的文献,提出理论依据并提炼合适的指标。结果: 基于救援规则提出考虑生命健康权的20个罕见病用药评价指标,为罕见病用药的公平性考量提供新维度。结论: 为提高罕见病药品可及性,有必要设立一些特殊的评估标准。本文基于救援规则,提出一系列考虑生命健康权的罕见病用药评价指标,为提高我国罕见病保障水平提供新视角。
Abstract
Objective: From the perspective of the right to life and health, new evaluation indicators for rare disease drugs are proposed based on rescue rules and experience at home and abroad. Methods: The paper uses literature research method and comparative analysis method to systematically review domestic and foreign literature on the right to life and health, health technology assessment, and experience of medical insurance for orphan drugs, to provide theoretical basis and extract appropriate indicators. Results: Based on the rule of rescue, 20 indicators are proposed to evaluate orphan drugs considering the right to life and health, and some new dimensions for the fairness of orphan drugs are provided. Conclusion: To improve the accessibility of medicines for rare diseases, it is necessary to establish some special evaluation criteria. In this paper, a set of evaluation indicators for orphan drugs considering the right to life and health is suggested based on the rule of rescue, providing a new perspective to improve the coverage of rare diseases in China.
关键词
罕见病用药 /
生命健康权 /
救援规则 /
评价指标
Key words
orphan drugs /
right to life and heath /
rule of rescue /
evaluation indicators
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参考文献
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基金
国家医疗保障局课题“区域医保基金第三方绩效评价研究”
