罕见病用药可负担性评价及医保政策研究  

Affordability Evaluation of Drugs for Rare Diseases and Research on Medical Insurance Policy

作　　者：李奕昊 唐贵忠[1] LI Yi-hao;TANG Gui-zhong(School of Public Health and Management,Chongqing Medical University,Chongqing 400016,China;不详)

机构地区：[1]重庆医科大学公共卫生与管理学院,重庆400016

出　　处：《卫生经济研究》2022年第4期53-57,共5页

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280320.00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小,大部分患者存在支付困难。对此,应逐步建立起全产业链,鼓励孤儿药研发,使罕见病患者有药可用,提高罕见病保障水平。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 280320.00yuan,and there was a big difference between patient with and without medical insurance.According to the catastrophic expenditure evaluation method,only pirfenidone would cause 11500 catastrophic spending population.According to the evaluation method of impoverishing effect,drugs for rare diseases would cause more than 160000 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.

关 键 词：罕见病 孤儿药 可负担性 医保政策 

分 类 号：R195[医药卫生—卫生统计学]