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目的探讨戈谢病患者用药负担性,为我国罕见病用药保障体系提供参考。方法对我院2009~2015年戈谢病患者基本情况和伊米苷酶使用情况进行分析,重点关注患者总人数、每年新增或递减人数、患者用药时间、伊米苷酶总药费和平均药费。结果 2009~2015年共有35人在我院领取伊米苷酶,我院戈谢病患者患者从2009年的25人增加至2015年的35人,戈谢病患者年增长率约5.7%(约1.4名·年-1);35名患者伊米苷酶总药品费用13 006.5万元,患者年平均用药金额91.86万元(2010~2015年)。结论近7年,我院就诊的戈谢病人数相对固定;戈谢病用药非常昂贵,个人几乎无法承担,亟须建议建立个人、政府和社会多方付费的罕见病用药保障体系。
Objective To explore the drug burden of Gaucher disease patients, and to provide a reference for the medication system for rare diseases in China. Methods To analyze the basic situation and the use of imiglucerase in patients with Gaucher’s disease from 2009 to 2015 in our hospital, with a focus on the total number of patients, the number of patients newly added or declining each year, the patient’s medication time, the total imiglucosidic drug consumption and the average Drugs. Results A total of 35 patients received imiglucerase in our hospital from 2009 to 2015. The number of patients with Gaucher disease in our hospital increased from 25 in 2009 to 35 in 2015. The annual increase rate of Gaucher’s patients is about 5.7% 1.4 patients · year -1); 35 patients with imiglucerase total drug costs 13 0065000 yuan, the average annual amount of patients medication 918600 yuan (2010 ~ 2015). Conclusions In the past seven years, the number of Gaucher patients in our hospital has been relatively fixed. Gaucher disease is very expensive and can hardly be undertaken by individuals. Therefore, it is imperative to set up a system for safeguarding the use of rare drugs for individual, government and society payment.