The diagnosis, treatment and health insurance for rare diseases is a common challenge around the world. As early as the 1980s, some countries or regions began to pay attention to patients with rare diseases and their healthcare security after the achieving of universal medical insurance or a sound medical insurance system, and successively issued regulations or policies on rare diseases. However, healthcare security for rare diseases in China is still in the exploratory stage. This paper introduces the development process of medical insurance system of typical countries and medical insurance for rare diseases, analyzes internal logical connection of the two, and explores the development of medical insurance for rare diseases. Drawing lessons from advanced experience abroad, suggestions and countermeasures are provided to promote the continuous improvement of the multi-level medical security system for rare diseases in China.
Key words
rare disease /
healthcare security /
orphan drug
{{custom_sec.title}}
{{custom_sec.title}}
{{custom_sec.content}}
References
[1] Feng S, Liu S, Zhu C, et al.National Rare Diseases Registry System of China and Related Cohort Studies: Vision and Roadmap[J]. Hum Gene Ther, 2018,29:128-135.
[2] Chan AYL, Chan VKY, Olsson S, et al.Access and Unmet Needs of Orphan Drugs in 194 Countries and 6 Areas: A Global Policy Review With Content Analysis[J]. Value Health, 2020,23:1580-1591.
[3] 黄如方,邵文斌.中国罕见病医疗保障城市报告2020[R].蔻德罕见病中心.(2020-05-30)[2022-02-21]中国罕见病医疗保障城市报告2020[R].蔻德罕见病中心.(2020-05-30)[2022-02-21]http://mp.weixin.qq.com/s/ycksmXEcT1w7wj6RwWSvbw.
[4] Manchikanti L, Helm Ii S, Benyamin R M, et al.Evolution of US Health Care Reform[J]. Pain Physician,2017,20:107-110.
[5] Khosla N, Valdez R.A compilation of national plans, policies and government actions for rare diseases in 23 countries[J]. Intractable Rare Dis Res,2018,7(4):213-222.
[6] 蒋蓉,邵蓉.美国罕见病药物资格认定管理政策分析及对我国的启示[J].中国食品药品监管,2020,(04):88-93.
[7] Ikegami N, Yoo B K, Hashimoto H, et al.Japanese universal health coverage: evolution, achievements, and challenges[J]. Lancet,2011,378:1106-1115.
[8] 冯俊超,刘路路,李顺平,等.日本罕见病医疗保障及其对我国的启示[J].中国药物经济学,2021,16(01):27-30.
[9] 丁乙芳,李洁.基于制度移植视角对我国孤儿药管理制度构建研究[J].中国卫生事业管理,2017,34(07):518-520+527.
[10] 许飞琼. 澳大利亚的医疗保险制度及其借鉴[J].中国医疗保险,2013(05):68-70.
[11] IQVIA艾昆纬.中国罕见病高值药物医疗保障研究报告[R]. IQVIA艾昆纬(2020-10-28)[2022-02-21]https://mp.weixin.qq.com/s/JX_cfmvi6Pp02TPepS349w.
[12] Paim J, Travassos C, Almeida C, et al.The Brazilian health system: history, advances, and challenges[J]. Lancet,2011,377:1778-1797.
[13] Arnold R J, Bighash L, Bryón Nieto A, et al.The role of globalization in drug development and access to orphan drugs: orphan drug legislation in the US/EU and in Latin America[J]. F1000Res,2015,4:57.
[14] 童伟,宁小花.俄罗斯免费医疗:发展历程、效果分析、困境及未来发展方向[J].俄罗斯东欧中亚研究,2020, (01): 65-92+156-157.
[15] 罕见病发展中心.中国罕见病药物可及性报告2019[EB/OL].北京:罕见病发展中心.(2020-02-28)[2022-02-21]http://www.cord.org.cn/news/528.html.
[16] 王东进. 与时偕行的中国医疗保障制度(上)[J].中国医疗保险,2019,(08):1-5.
