我国罕见病医疗保障政策的伦理思考  

Ethical Reflections on Rare Disease Medical Security Policy in China

作　　者：赵丽娟 燕娟[1] ZHAO Li-juan;YAN Juan(School of Humanities and Social Sciences,Shanxi Medical University,Taiyuan 030001,China)

机构地区：[1]山西医科大学人文社会科学学院,山西太原030001

出　　处：《医学与哲学》2022年第16期12-16,共5页Medicine and Philosophy

基　　金：2020年山西省高等学校人文社会科学重点研究基地项目(20200116);2021年山西省研究生教育创新项目(2021Y427)。

摘　　要：罕见病患者群体作为“脆弱人群”,其医疗权、健康权的维护应受到更多关注。通过梳理我国现行罕见病医疗保障政策,发现存在的问题,如诊疗体系尚未健全、药品可及性有限、多层次保障体系尚未成熟等,结合生命至上、公正、共济三项伦理原则的思考,从政府、医院、社会三个主体视角探寻完善罕见病医疗保障政策的合理路径,提出“政府引导、维护公正;社会共担、温暖互助;医院关怀、敬畏生命”的对策和建议。营造尊重、公正、互助、和谐的氛围,切实解决罕见病患者群体看病难、看病贵等现实问题。Patients with rare disease are regarded as"vulnerable group",the protection of their rights to medical care and the rights to health should receive more attentions.The purpose is to sort out the current medical security policies for rare diseases in China and detect existing problems such as the imperfect diagnosis and treatment system,limited drug accessibility,insufficient multi-level security system.Combined with ethical reflections on the three principles of life first,justice and mutual assistance,a reasonable path is explored from perspectives of the government,hospital and society.Several proposals and suggestions are proposed,such as government-guided,justice maintenance,joint responsibility in the society,mutual assistance,hospital care,and reverence for life.The main goal is to create an atmosphere of respect,justice,mutual assistance and harmony,and effectively solve the practical problems of rare disease patients such as difficult and expensive medical treatment.

关 键 词：罕见病 医疗保障 伦理原则 

分 类 号：R-05[医药卫生]