[1]沈杨阳.中国罕见病问题及综合保障机制研究[J].卫生经济研究,2024,41(12):1-6.
　SHEN Yangyang.Study on the Problems of Rare Diseases and Comprehensive Protection Mechanisms in China[J].Journal Press of Health Economics Research,2024,41(12):1-6.
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中国罕见病问题及综合保障机制研究
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卫生经济研究[ISSN:1004-7778/CN:33-1056/F]

卷:
41
期数:
2024年12期
页码:
1-6
栏目:
政策视野
出版日期:
2024-12-03

文章信息/Info

Title:
Study on the Problems of Rare Diseases and Comprehensive Protection Mechanisms in China
作者:
沈杨阳1
1.中国财政科学研究院，北京 100142
Author(s):
SHEN Yangyang
Chinese Academy of Fiscal Sciences, Beijing 100142, China
关键词:
罕见病; 创新药研发; 综合保障机制
Keywords:
rare diseases;  innovative drug development;  comprehensive protection mechanism
分类号:
R19
文献标志码:
A
摘要:
我国罕见病患者总人数多，罕见病研究是患者群体的“刚性需求”，但存在“市场失灵”；政府、社会、市场、患者都在积极探索罕见病保障机制，但仍存在不完善之处。罕见病研究源头要“有医”、核心要“有药”、关键要“有保”，需要以政府为主导，各方发力；提高医疗科研人员基础研究能力，颠覆传统医药企业创新药研发模式，配套多层次医疗保障体系，真正实现罕见病患者“病有所医”“医有所药”“药有所保”。
Abstract:
The total number of patients with rare diseases is large, and the research of rare diseases is the "rigid demand" of the patient group, but there is a "market failure". The government, society, market and patients are trying their best to promote the protection mechanism for rare diseases, but there are still some imperfections. The source of rare disease research should be "medical" to improve the basic research capability of medical researchers, the core should be "pharmaceutical" to subvert the innovative drug research and development mode of traditional pharmaceutical enterprises, and the key should be "insurance" to support the multi-level medical insurance system. Therefore, it is necessary for the government to support and strengthen its efforts, and guide the participation of society, the market and other diversified subjects to promote the scientific research and management of rare diseases, so as to truly realize that patients with rare diseases can be provided with medical treatment, drug and insurance.

参考文献/References:

[1] Nguengang Wakap S,Lambert D M, Olry A,et al.Estimating cumulative point prevalence of rare diseases:analysis of the Orphanet database[J].European Journal of Human Genetics,2020,28(02):165-73.
[2] 北京病痛挑战公益基金会.2023中国罕见病行业趋势观察报告[R].
[3] Hanganu B,Manoilescu I S,Birlescu E A,et al.Physicianpatient relationship in rare diseases:an ethical approach[J].Archives of the Balkan Medical Union,2019,54(01):166-171.
[4] 肖建华，王超群.罕见病防治和保障的支持体系:台湾的经验与启示[J].社会保障研究，2018（02）：92-105.
[5] 纪文晓，王宁.罕见病儿童家庭福利资源供给体系的优化[J].青年研究，2023（01）：35-44，95.
[6] 杨婕娱.罕见病患者的权利保障：论争与辨析[J].医学与哲学，2023，44（07）：17-22.
[7] 陈劲，魏巍.患者创新：源起、理论内涵与实践[J].软科学，2022，36（12）：1-10.
[8] 谢莉琴，高星，胡红濮.罕见病综合保障体系建设的国际经验与启示[J].社会保障研究，2018（04）：98-103.
[9] 丁若溪，张蕾，赵艺皓，等.罕见病流行现状——一个极弱势人口的健康危机[J].人口与发展，2018，24（01）：72-84.
[10] 孙洋，张继.促进我国医药产业创新发展的税收政策研究[J].国际税收，2023（05）：71-76.
[11] 邵鲁文.“天价”救命药入医保，距离破解罕见病医治难还有多远[N].新华每日电讯，2023-03-01.
[12] 曾淑金，吴良淼，翁开源.多层次视角下国内外罕见病用药保障支持体系研究[J].医学与社会，2023，36（03）：30-35.
[13] 焦海涛.罕见病药品供应中的市场独占权及其法律限制[J].东方法学，2022（05）：153-166.
[14] 孙洋，张继.促进我国医药产业创新发展的税收政策研究[J].国际税收，2023（05）：71-76.

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更新日期/Last Update: 2024-12-03