程彦, 房云海, 张心声. 血友病救助体系的现状和探讨[J]. 罕见病研究, 2022, 1(4): 375-379. DOI: 10.12376/j.issn.2097-0501.2022.04.003
引用本文: 程彦, 房云海, 张心声. 血友病救助体系的现状和探讨[J]. 罕见病研究, 2022, 1(4): 375-379. DOI: 10.12376/j.issn.2097-0501.2022.04.003
CHENG Yan, FANG Yunhai, ZHANG Xinsheng. Current Status and Discussion of Hemophilia Aid System[J]. Journal of Rare Diseases, 2022, 1(4): 375-379. DOI: 10.12376/j.issn.2097-0501.2022.04.003
Citation: CHENG Yan, FANG Yunhai, ZHANG Xinsheng. Current Status and Discussion of Hemophilia Aid System[J]. Journal of Rare Diseases, 2022, 1(4): 375-379. DOI: 10.12376/j.issn.2097-0501.2022.04.003

血友病救助体系的现状和探讨

Current Status and Discussion of Hemophilia Aid System

  • 摘要: 血友病是一种伴性遗传性出血性疾病, 目前唯一有效的治疗措施是因子替代治疗。中国血友病的诊疗主要存在血友病患者日益增长的生活质量需求与医保、医疗、医药不均衡不充分之间的矛盾。昂贵的治疗费用是造成患者“因病致贫”“因病返贫”的主要原因。本文将通过已有文献数据、现有患者援助项目情况,对血友病救助体系的现状进行分析,旨在通过社会保险、社会救济和医疗机构三方共同努力, 持续开展深度合作,积极探索高质量的医疗服务和多元化的创新支付模式,形成完整的血友病综合医疗救助体系,让血友病患者能够得到规范的诊疗, 争取实现与普通人接近的生活质量。

     

    Abstract: Hemophilia is a hereditary bleeding disorder where the only effective treatment is factor replacement therapy. The main contradiction of hemophilia in China is the contradiction between the increasing demand for quality of life of hemophilia patients and insufficient medical insurance, medical treatment and medicine. Expensive treatment costs are the main reason for patients to "be impoverished due to illness" and "return to poverty due to illness". This article analyzes the current status of the hemophilia aid system through the existing literature data and existing patient aid projects. Cooperation of social insurance, social relief and high-quality medical services is critical to a complete hemophilia comprehensive medical aid system, so that hemophilia patients can receive standardized diagnosis and treatment, and try to achieve the close quality of life as normal.

     

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