中国罕见病保障机制:现状、挑战与建议  

Security Mechanism for Rare Diseases in China:Progress,Problems and Suggestions

作　　者：朱坤 ZHU Kun(Chinese Academy of Fiscal Sciences,Beijing 100142,China)

机构地区：[1]中国财政科学研究院,北京100142

出　　处：《卫生经济研究》2024年第1期23-28,共6页

摘　　要：当前,我国部分地区积极探索建立罕见病保障机制,包括医疗服务保障、药品供应保障、费用保障。在此过程中,面临系统性思维欠缺、诊疗服务能力不强、药物供应保障能力不足、费用分担机制不健全等挑战。对此,要强化系统思维,加强部门联动,加速形成罕见病保障机制共识;加强罕见病诊疗技术研究,提升罕见病诊疗服务能力;完善罕见病药品的全流程支持性政策,提升罕见病药品的可及性;汲取地方有益经验,加快建立全国性的罕见病多层次费用保障机制。In some regions in China,the security mechanism for rare diseases has been actively explored and established,including medical service security,drug supply security,and cost security.However,the security mechanism for rare diseases faces challenges,such as a lack of systematic thinking,weak diagnostic and treatment service capabilities,insufficient drug supply security capabilities,and inadequate cost sharing mechanisms.To address these problems,it is necessary to strengthen systematic thinking to strengthen departmental collaboration and promote the construction of rare disease security mechanism,strengthen research on rare disease diagnosis and treatment technology to enhance the ability of rare disease diagnosis and treatment services,improve the full process supportive policies for rare disease drugs to improve their accessibility,learn from local beneficial experiences and accelerate the establishment of a nationwide multi-level cost security mechanism for rare diseases.

关 键 词：罕见病 保障机制 医疗服务保障 药品供应保障 费用保障 

分 类 号：R197.1[医药卫生—卫生事业管理]