[1]李奕昊,唐贵忠.罕见病用药可负担性评价及医保政策研究[J].卫生经济研究,2022,39(4):53-57.
　LI Yi-hao,TANG Gui-zhong.Affordability Evaluation of Drugs for Rare Diseases and Research on Medical Insurance Policy[J].Journal Press of Health Economics Research,2022,39(4):53-57.
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罕见病用药可负担性评价及医保政策研究
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卫生经济研究[ISSN:1004-7778/CN:33-1056/F]

卷:
39
期数:
2022年4期
页码:
53-57
栏目:
疾病经济负担
出版日期:
2022-03-28

文章信息/Info

Title:
Affordability Evaluation of Drugs for Rare Diseases and Research on Medical Insurance Policy
作者:
李奕昊1; 唐贵忠1
1.重庆医科大学公共卫生与管理学院，重庆 400016
Author(s):
LI Yi-hao;  TANG Gui-zhong
School of Public Health and Management, Chongqing Medical University, Chongqing 400016, China
关键词:
罕见病; 孤儿药; 可负担性; 医保政策
Keywords:
rare disease;  orphan drugs;  affordability;  medical insurance policy
分类号:
R195
文献标志码:
A
摘要:
目的:后脱贫时代，对罕见病用药可负担性进行评价，为完善相关医保政策提出建议。方法:用3种方法，对12种罕见病用药的可负担性进行评价，分析医保制度覆盖后罕见病用药可负担性的改善程度。结果:按WHO/HAI标准调查法，罕见病药品最高年治疗费用达280 320.00元，非医保患者和医保患者差异较大；按灾难性支出评价法，仅吡非尼酮就会造成1.15万灾难性支出人口；按致贫作用评价法，罕见病用药会导致超过16万非医保患者陷入贫困。结论:我国罕见病用药可负担性较差，在医保共付体系下，医保制度对罕见病可负担性的改善程度较
Abstract:
Objective To evaluate the affordability of drugs for rare diseases in the post-poverty era, and to put forward suggestions for improving relevant medical insurance policies. Methods This study evaluated the affordability of 12 kinds of drugs for rare diseases by 3 methods. Then we analyzed the degree of improvement of the affordability of drugs for rare diseases after the coverage of the medical insurance system. Results According to the WHO/HAI standard survey, the highest annual treatment cost of rare disease drugs is 280 320.00 yuan, and there was a big difference between patient with and without medical insurance. According to the catastrophic expenditure evaluation method, only pirfenidone would cause 11 500 catastrophic spending population. According to the evaluation method of impoverishing effect, drugs for rare diseases would cause more than 160 000 patients without medical insurance falling into poverty. Conclusion The affordability of drugs for rare diseases in our country is poor. Under the co-payment system of medical insurance, the improvement of the affordability of rare diseases by the medical insurance system is small, and most patients have difficulty in payment. It is suggested to gradually establish an entire industry chain, encourage the research and development of orphan drugs, and improve the insurance for rare diseases.

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更新日期/Last Update: 2022-03-28