摘要
建立健全罕见病保障机制有助于加快我国全民健康覆盖和健康中国建设进程,也有助于推动我国生物医药产业转型升级。文章从罕见病的定义、药品供应保障和费用分担,以及对医药产业发展的促进等方面对部分国家和地区的做法进行梳理,总结其经验启示与建议。一是界定罕见病范围是建立罕见病保障机制的前提和基础,需要从多维度对罕见病进行界定,更好地推动罕见病保障机制的建设。二是改善药品可及是建立罕见病保障机制的重要内容,需要进一步加强对国内企业的支持力度,及时将国内企业涉及罕见病的相关产品纳入医保目录,更好地改善罕见病患者的药物可及性。三是普惠与特惠相结合的医疗保障制度是缓解罕见病患者就医负担的主要手段,应优先建立普惠性制度,让所有罕见病患者均能获得基本医疗保险制度的待遇保障。在此基础上,探索建立特惠性保障制度,缓解罕见病患者因病返贫、因病致贫问题。四是建立健全罕见病保障机制是实现我国生物医药产业转型升级的重要助推器。应加强医疗保障政策与医药产业政策的衔接,进一步完善我国罕见病保障机制,推动医药产业转型升级和高质量发展,更好地满足我国罕见病患者的药品保障需求。
Establishing and improving the medical security mechanism for rare diseases will not only help to accelerate the process of universal health coverage and Healthy China Construction,but also help to promote the transformation and upgrading of China’s biomedical industry.However,at present,the construction of rare disease security mechanism in China lags behind.This paper reviewed the practices of some countries and regions from the aspects of the definition of rare diseases,drug supply and cost sharing of rare diseases,as well as the promotion of the development of the pharmaceutical industry,and summarized their experience,implication and suggestions as follows.First,defining the scope of rare diseases is the premise and basis for establishing the medical security mechanism of rare diseases.China needs to define rare diseases from a multidimensional perspective to better promote the construction of the medical security mechanism of rare diseases.Second,improving drug accessibility is an important part of establishing a rare disease medical security mechanism.China needs to further strengthen its support for domestic enterprises,timely include the products related to rare diseases of domestic enterprises into the medical insurance catalogue,and better improve the drug accessibility of patients with rare diseases.Third,the medical security system combining inclusive and preferential protection is the main means to alleviate the medical burden of patients with rare diseases.China should give priority to establishing an inclusive system so that all patients with rare diseases can obtain the benefit from the basic medical insurance system.On this basis,it is suggested to explore the establishment of a preferential security system to alleviate the problem of poverty caused by illness.Fourth,establishing and improving the medical security mechanism for rare diseases is an important booster to realize the transformation and upgrading of China’s biomedical industry.China should strengthen the connection between medical security policy and pharmaceutical industry policy,and further improve the security mechanism of rare diseases in China,and promote the transformation,upgrading and high-quality development of the pharmaceutical industry to better meet the drug needs of patients with rare diseases in China.
作者
朱坤
ZHU Kun(Chinese Academy of Fiscal Sciences,Beijing 100142,China)
出处
《南京医科大学学报（社会科学版）》
2022年第1期1-5,共5页
Journal of Nanjing Medical University（Social Sciences）
基金
百济神州(上海)生物医药技术有限公司委托课题“我国罕见病保障机制研究”。
关键词
罕见病
医疗保障
孤儿药
药物可及性
rare diseases
medical security
orphan drug
drug accessibility
作者简介
通信作者:朱坤(1973-),男,江苏射阳人,博士,副研究员,研究方向为医疗保障与卫生财政政策研究,7862030@qq.com。
