| 引用本文：张晓星, 周婷婷, 潘杰.国内外罕见病用药保障模式的评述[J].中国卫生政策研究,2020,13(11):18-23 |
|
| 国内外罕见病用药保障模式的评述 |
| 投稿时间：2020-09-23 修订日期：2020-11-19 PDF全文浏览 HTML全文浏览 |
| 张晓星1,2, 周婷婷1,2, 潘杰1,2 |
1. 四川大学华西公共卫生学院/四川大学华西第四医院 四川成都 610041;
2. 四川大学西部农村卫生发展研究中心 四川成都 610041 |
| 摘要:目的：通过比较国际和国内关于罕见病药物保障模式的特征和侧重点，总结目前我国在这一领域实践的经验和不足，为保障模式的选择和相关政策的改进提供建议。方法：梳理美国、欧盟、新加坡、澳大利亚等国家和组织成员国针对罕见病出台的保障措施，以及国内各地区的探索经验，并分析不同保障模式之间的差异。结果：目前关于罕见病比较典型的保障模式有医疗保险报销、财政资金补助、专项基金补偿、医疗救助资金援助等，它们在筹资规模、保障水平、可持续性等方面有所不同。结论：我国需在考虑自身经济实力、罕见病流行特征等因素的基础上，采取多层次、多水平的综合保障模式，力求精准化资助罕见病患者的用药，共同分担其费用负担。 |
| 关键词:罕见病 孤儿药 保障模式 |
|
| Implications on the models of drug guarantee for rare diseases at national and international scale |
| ZHANG Xiao-xing1,2, ZHOU Ting-ting1,2, PAN Jay1,2 |
1. West China School of Public Health and West China Fourth Hospital, Sichuan University, Chengdu Sichuan 610041, China;
2. West China Research Center for Rural Health Development, Sichuan University, Chengdu Sichuan 610041, China |
| Abstract:Objective: By comparing the characteristics and key considerations of foreignand domestic security models for rare disease drugs, this article summarizes the current experience and deficiencies in this domain in China, and provides suggestions for the selection of appropriate guarantee models and the promotion and improvements of the related policies. Methods: The measures for rare diseases issued by the United States, the European Union, Singapore, Australia and other countries were sorted out;the relevant experiences of various regions in China were taken into account, and the differences between these modes of different countries and regions were analyzed as well. Results: At present, the typical security models for rare diseases include medical insurance reimbursement, financial subsidies, special fund compensation, and medical assistance fund and the likes. Disparities were detected in terms of financing scale, assistance level, and sustainability. Conclusions: China should comprehensively consider its own economic strength, the epidemiological characteristics of rare diseases and other factors at a multi-level scale, and then a multi-level security model should be adopted to accurately fund the drugs forpatients with rare diseases and share the burden of their costs together. |
| Key words:Rare diseases Orphan Drugs Security model |
| 摘要点击次数: 1149 全文下载次数: 765 |
|
|
|
|
|
