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卫生经济研究[ISSN:1004-7778/CN:33-1056/F]

卷:

43

期数:

2026年08期

页码:

21-24

栏目:

聚焦医改

出版日期:

2026-07-30

文章信息/Info

Title:

Study on the Current Status and Innovation Pathways of Rare Disease Protection Mechanism in China

作者:

张 素¹

1.中共中央党校（国家行政学院）国家治理教研部，北京 100091

Author(s):

ZHANG Su

Department of National Governance, Party School of the CPC Central Committee(National Academy of Governance), Beijing 100091, China

关键词:

罕见病保障机制; 多层次医疗保障体系; 创新路径

Keywords:

rare disease protection mechanisms;  multi-tiered healthcare security system;  innovation pathways

分类号:

R19

文献标志码:

A

摘要:

近年来，国家高度重视罕见病的防治与保障工作，在罕见病诊疗网络建设、药品审评审批及医保目录纳入等方面取得了显著成就，但仍面临罕见病保障定位模糊、筹资渠道单一、“三医”联动不足、诊疗体系薄弱等系统性困境。对此，要明晰罕见病保障的定位，构建多层次医疗保障体系，通过创新筹资机制、强化部门协同、衔接长期护理保险、加快专门立法、优化药品价值评估等措施，提升罕见病患者医疗可及性与保障水平，从而破解罕见病保障难题。

Abstract:

In recent years, the government has attached great importance to the prevention, treatment, and protection for rare diseases. Significant progress has been made in the construction of diagnosis and treatment networks, drug review and approval, and the inclusion of drugs in National Reimbursement Drug List for rare diseases. However, systemic challenges remain, including ambiguous protection positioning, single funding channels, insufficient coordination among medical services, medical insurance, and pharmaceuticals, and a weak diagnosis and treatment system. In response, it is necessary to clarify the positioning of rare disease protection, establish a multi-tiered healthcare security system, and enhance medical accessibility and the level of protection for rare disease patients by implementing measures such as innovating financing mechanisms, strengthening interdepartmental coordination, integrating long-term care insurance, accelerating specialized legislation, and optimizing drug value assessment, thereby resolving the challenges in rare disease protection.

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更新日期/Last Update: 2026-07-30