罕见病的诊疗与保障是全球共同面临的挑战。早在20世纪80年代,部分国家或地区在实现全民医保或医保体系健全后,开始关注罕见病患者及其医疗保障问题,陆续出台罕见病的相关法规或政策。然而,中国罕见病医疗保障仍处于探索阶段。本文通过介绍典型国家医保体系与罕见病医疗保障的发展历程,分析两者内在逻辑联系,探究罕见病医疗保障的发展规律,在借鉴国外先进经验的基础上,为我国不断完善罕见病多层次医疗保障体系提供建议和对策。
Abstract
The diagnosis, treatment and health insurance for rare diseases is a common challenge around the world. As early as the 1980s, some countries or regions began to pay attention to patients with rare diseases and their healthcare security after the achieving of universal medical insurance or a sound medical insurance system, and successively issued regulations or policies on rare diseases. However, healthcare security for rare diseases in China is still in the exploratory stage. This paper introduces the development process of medical insurance system of typical countries and medical insurance for rare diseases, analyzes internal logical connection of the two, and explores the development of medical insurance for rare diseases. Drawing lessons from advanced experience abroad, suggestions and countermeasures are provided to promote the continuous improvement of the multi-level medical security system for rare diseases in China.
关键词
罕见病 /
医疗保障 /
孤儿药
Key words
rare disease /
healthcare security /
orphan drug
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基金
国家自然科学基金面上项目：利益相关者视角下孤儿药医保准入标准的偏好研究（72174110）
