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在我们身边有这样一群人，他们常年被查不出病因的顽疾折磨，即便查出病因也会因天价的药费而放弃治疗，他们就是"罕见病"群体。到目前为止，世界卫生组织（WHO）对"罕见病"还没有确切的定义，只是笼统地将患病人数占总人口比例的0.065％－0.1％之间的疾病列为罕见病。有关医学机构调查显示，罕见病患者及其家属大部分希望得到制度性的稳定援助。但现实是残酷的，中国在这方面的制度建设极为欠缺，很多罕见病药物并未列入医保。只有很少一部分罕见病患者能够得到少量的社会捐款，或是国外药厂的赠药，但这也并非是长期且稳定的。中国罕见病发展中心主任黄如方表示，中国当下尚未在国家层面上对罕见病采取任何专门的应对措施，包括罕见病药品研发、注册，罕见病患者医疗保障等方面都还处于全国性的制度空白状态。在此方面，可以借鉴发达国家帮助罕见病患者的经验，那就是运用市场激励机制，建立多层次的保障制度。
Detailed Information
| Author: | Phoenix Weekly |
|---|---|
| Publication Year: | 2017 |
| ISBN: | 3680926 |
| Language: | Chinese |
| File Size: | 0.192 |
| Format: | |
| Price: | FREE |
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