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福建省罕见病患者医疗保障现状及对策
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Study on Medical Security of Patients with Rare Diseases in Fujian
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    摘要:

    摘 要 目的:了解福建省罕见病患者的医疗保障现状,为制定罕见病医疗保障对策提供依据。方法:对7种类型的386例罕见病患者的医疗保障等进行调查分析。结果:7种罕见病患者年平均医疗费用10.9万元,费用最高为220万元。91.2%罕见病患者表示在治疗过程中遇到过较大困难,最主要原因为治疗费用太高(57.7%)。罕见病患者年平均自付医疗费用为5.3万元,76.9%患者一年自付的医疗费用超过家庭年收入的40%,33.4%患者年自付的医疗费用超过了家庭年收入。结论:把罕见病治疗费用纳入医保报销范畴,帮助罕见病患者得到应有的有效治疗,切实减轻患者的个人医疗费用负担。

    Abstract:

    Study on Medical Security of Patients with Rare Diseases in Fujian WU Bin, LUO Ren-xia, CAO Jian-pin, et al. Department of Epidemiology and statistics, Fujian Medical University,Fuzhou,Fujian,350004,ChinaAbstract Objective:To investigate the medical security of patients with rare diseases in Fujian, in order to provide references for establishing medical security policy for rare diseases. Methods: The information of 386 cases with rare diseases were surveyed. Results: The average annual medical cost is 109,000 yuan, maximum cost was 2.2 million yuan. Most of people with rare diseases had encountered difficulties during treatment. The main reasons is high treatment cost (57.7%). The average self-pay part of annual medical cost is 53,000 yuan. The self-pay part exceeded 40% of family annual income in 76.9% cases. The self-pay part exceeded family annual income in 33.4% cases. Conclusion: The treatment costs of rare disease shall be included in the scope of medical insurance, to help rare disease patients be treated, to reduce the burden on the personal medical expenses of patient.

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吴彬,罗仁夏,曹建平,等.福建省罕见病患者医疗保障现状及对策[J].中国卫生经济,2017,(3):37-39.福建省罕见病患者医疗保障现状及对策[J]. CHINESE HEALTH ECONOMICS,2017,(3):37-39.

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