[1]朱 坤sup>.中国罕见病保障机制：现状、挑战与建议[J].卫生经济研究,2024,41(01):23-28.
　ZHU Kun.Security Mechanism for Rare Diseases in China: Progress，Problems and Suggestions[J].Journal Press of Health Economics Research,2024,41(01):23-28.
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中国罕见病保障机制：现状、挑战与建议
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卫生经济研究[ISSN:1004-7778/CN:33-1056/F]

卷:
41
期数:
2024年01期
页码:
23-28
栏目:
医疗保障
出版日期:
2024-01-03

文章信息/Info

Title:
Security Mechanism for Rare Diseases in China: Progress，Problems and Suggestions
作者:
朱 坤sup>1
1.中国财政科学研究院，北京 100142
Author(s):
ZHU Kun
Chinese Academy of Fiscal Sciences, Beijing 100142, China
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
Keywords:
rare disease;  security mechanism;  medical service security;  drug supply security;  cost security
分类号:
R197.1
文献标志码:
A
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。
Abstract:
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.

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更新日期/Last Update: 2024-01-03