国内外罕见病患者医疗保障现状探讨及启示

Preliminary Study on the Status-Quo of Medical Insurance for Patients with Rare Diseases at Home and Abroad

目的通过了解国外罕见病患者医疗保障现状,为国内罕见病患者医疗保障改进提供借鉴,为完善我国罕见病立法及政策提出初步构想。方法检索2006年-2016年国外关于罕见病患者医疗保障的文献,对文献观点及结论进行统计分析。结果国外对于罕见病患者的医疗保障主要以界定罕见病内涵、提高罕见病药品可及性与医疗保险报销比重等方面作为讨论重点。结论罕见病患者医疗保障在不同国家和地区存在差异,本研究涉及鼓励罕见病科学研究、规范罕见病药物管理、增加罕见病在医疗保险体系中的占有率等若干策略。

Objective To investigate the status of medical care for patients with rare diseases abroad to provide reference for the improvement of health care for rare diseases in China and put forward preliminary ideas for improving the legislation and policies of rare diseases in China.Methods This paper retrieved literatures on the medical care of patients with rare diseases from 2006 to 2016 and analyzed the literature views and conclusions.Results Foreign medical care for rare diseases mainly focused on discussing the definition of a rare disease,improvement of the accessibility of medication and the health insurance reimbursement level etc.Conclusion There are differences in medical insurance policies for rare diseases in different countries and regions.The study may include strategies to encourage rare disease research,standardize the management of rare diseases,and increase the occupancy rate of rare diseases in the medical insurance system and several strategies etc.