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以青岛市戈谢病患者为例研究罕见病药物保障多方支付的可行性
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| 篇名： | 以青岛市戈谢病患者为例研究罕见病药物保障多方支付的可行性 |
| TITLE： | |
| 摘要： | 目的：探讨罕见病药物保障多方支付的可行性，为罕见病的治疗及相关政策的制订提供参考。方法：以青岛市戈谢病为例，分析相关医保政策、药品供应情况。以筹资来源划分，对青岛市戈谢 病患者治疗药物经济负担进行测算，并以青岛市戈谢病患者总费用平均数为基础，按照相关流行病学调查数据对全国戈谢病患者药品费用负担进行模拟，分析青岛市罕见病医保模式存在的问题。结果与结论：青岛市制定了一系列医保政策，医保筹资模式包括社会资金（来源于青岛市慈善总会，由药品生产企业提供药品）、医保基金（用于医疗保险统筹范围内个人自付费用的救助）和民政救助（用于医疗保险统筹范围外费用的救助）。伊米苷酶是目前国内唯一经过批准的治疗戈谢病的特异性药物，青岛市采取了定点医师、定点治疗、定点取药制度。截至2017年底，青岛市8位患者的全年用药量为38～170瓶，合计686瓶；治疗年费用为78.66万～351.90万元，合计1 420.02万元；自付费用为0.98万～19.74万元（自付比例为0.46％～8.87％），合计66.14万元；通过补充医保报销的费用为50.98万～178.98万元（占比为54.59％～65.94％），合计857.78万元；3位患者获得了民政救助，救助金额为2.31万～13.00万元（占比为1.89％～4.18％），合计24.14万元。按照相关流行病学调查数据（患病率为十万分之0.15）预估全国约有戈谢病患者2 093人，参考青岛市多方共付模式，预计全国戈谢病患者总药品费用约为37.15亿元，慈善救助可承担12.38亿元，而医保需支出约22.55亿元，个人自付约2.22亿元。从治疗药物负担来看，青岛市多方共付的模式确实减轻了患者的个人负担，取得了较为显著的效果。但青岛市多方共付模式存在“医保移民”、药品可及性较低、药品价格垄断、疾病三级预防有待加强等问题，国家或各省市在制订罕见病相关政策时可参考青岛市的模式，但也需注意存在的问题。 |
| ABSTRACT： | OBJECTIVE： To investigate the feasibility of multi-payment for drugs for rare diseases and also provide reference for rare disease treatment and the formulation of related policy. METHODS： Taking Gaucher’s disease in Qingdao as an example， the relevant medical insurance policies and drug supply were analyzed； according to the sources of financing， the economic burden of treatment drugs for patients with Gaucher’s disease in Qingdao was estimated. Based on the average total cost of patients with Gaucher’s disease in Qingdao， the drug cost burden of patients with Gaucher’s disease in the whole country was simulated according to the relevant epidemiological survey data， and the problems of medical insurance model for rare diseases in Qingdao were analyzed. RESULTS & CONCLUSIONS： A series of medical insurance policies were formulated in Qingdao. The financing mode of medical insurance includes social funds （from Qingdao Charity Federation， drugs are provided by pharmaceutical manufacturers）， medical insurance funds （used for personal self-payment assistance within the scope of medical insurance co-ordination） and civil assistance （used for assistance outside the scope of medical insurance co-ordination）. Imidase is currently the only approved specific drug for Gaucher’s disease in China. The designated physician， treatment and drug-taken system is adopted in Qingdao. By the end of 2017， the annual drug consumption of 8 patients in Qingdao was 38-170 bottles， totaling 686 bottles. The annual cost of treatment ranged from 786 600 to 3 519 000 yuan， totaling 1 420 200 yuan. The self-paid expenses ranged from 9 800 to 197 400 yuan （the self-paid ratio ranged from 0.46％ to 8.87％）， totaling 661 400 yuan. The reimbursement cost by supplementary medical insurance was 509 800 to 1 789 800 yuan （accounting for 54.59％ to 65.94％）， totaling 8 577 800 yuan. Three patients received civil assistance， the amount of which ranged from 23 100 to 13 000 yuan （accounting for 1.89％ to 4.18％）， totaling 241 400 yuan. According to the relevant epidemiological survey data （the prevalence rate was 0.15 per 100 000）， it is estimated that there are about 2 093 patients with Gaucher’s disease in China. Referring to Qingdao multi-payment model， it is estimated that the total cost of drugs for Gaucher's disease in China is about 3.715 billion yuan， charitable assistance can bear 1.238 billion yuan， while medical insurance expenditure is about 2.255 billion yuan， and individual self-payment is about 222 million yuan. From the point of view of drug cost burden， the multi-payment model in Qingdao has lightened the personal burden of patients’ has achieved significant results. There are problems in Qingdao’s multi-payment model， such as “medical insurance immigration”， low drug accessibility， drug price monopoly， three-level disease prevention needs to be strenghten， etc. The state or provinces and cities can refer to Qingdao model when formulating policies related to rare diseases. Great importance should be paid attention to the existing problems. |
| 期刊： | 2019年第30卷第19期 |
| 作者： | 杨燕，何江江，王月强，康琦，胡善联 |
| AUTHORS： | YANG Yan，HE Jiangjiang，WANG Yueqiang，KANG Qi，HU Shanlian |
| 关键字： | 青岛市；戈谢病；罕见病；药物；保障；负担 |
| KEYWORDS： | Qingdao； Gaucher’s disease； Rare diseases； Drug； Guarantee； Burden |
| 阅读数： | 1004 次 |
| 本月下载数： | 22 次 |
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