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卫生经济研究[ISSN:1004-7778/CN:33-1056/F]

卷:

43

期数:

2026年02期

页码:

54-57

栏目:

药械管理

出版日期:

2026-01-31

文章信息/Info

Title:

Research on the Construction and Policy Optimization of Rare Disease Drug Security Mechanisms

作者:

李 怡¹; 李国群¹; 吴海波¹

1.江西中医药大学经济与管理学院，江西 南昌 330004

Author(s):

LI Yi;  LI Guoqun;  WU Haibo

School of Economics and Management, Jiangxi University of Chinese Medicine, Nanchang Jiangxi 330004, China

关键词:

罕见病药品; 用药保障机制; 医疗保障

Keywords:

rare disease drugs;  drug security mechanism;  medical security

分类号:

R19

文献标志码:

A

摘要:

当前，我国罕见病用药保障面临罕见病目录与医保报销适应性不足、罕见病药品终端环节使用受阻、罕见病药品“双通道”效率低下等问题。对此，亟须构建罕见病用药保障机制，坚持科学性、可持续性、公平与效率并重的原则，促进罕见病药品研发创新，提速上市进程，并控制罕见病药品价格，提升药品可及性，切实保障罕见病药品的供应和使用。同时，完善罕见病药品监管政策、推进罕见病药品审评审批机制改革、建立健全罕见病治疗体系，切实保障罕见病患者健康权益，推动罕见病防治事业高质量发展。

Abstract:

Currently, China's rare disease drug security faces challenges such as insufficient compatibility between the rare disease catalogue and medical insurance reimbursement, obstacles in the terminal use of rare disease drugs, and low efficiency of the "dual-channel" policy for rare disease drugs. In response, there is an urgent need to construct a rare disease drug security mechanism. Adhering to the principles of scientific rigor, sustainability, and the balance of equity and efficiency, efforts should be made to promote the research, development, and innovation of rare disease drugs, accelerate their market approval process, control drug prices, and enhance drug accessibility, thereby effectively ensuring the supply and use of rare disease drugs. Meanwhile, it is essential to improve regulatory policies for rare disease drugs, advance the reform of the drug review and approval mechanism, and establish a robust rare disease treatment system, so as to safeguard the health rights and interests of patients with rare diseases and promote the high-quality development of rare disease prevention and treatment.

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更新日期/Last Update: 2026-02-03