摘要
在我国,大多数罕见病患者群体依旧面临着诊治困难、用药负担重等难题。随着社会对罕见病患者群体关注度的不断上升,国家层面虽然未出台罕见病专项法律法规,但已有部分省市先行试点,探索罕见病用药保障机制。本研究在佛山、广州两地展开调研,发现佛山市形成了包含“平安佛医保”和医疗救助等多层次罕见病医疗保障体系;广州市的补充型商业医疗保险“穗岁康”对罕见病患者的保障力度更加。通过深入分析两地罕见病用药保障机制的特点、实施效果等,总结实施经验,提出建议,为我国制定罕见病相关政策提供良好借鉴。
In China,most patients with rare diseases still face the problems of difficult diagnosis and treatment,heavy medication burden etc.As the society′s attention to rare diseases as a special group continue to rise,although the national level has not issued special laws and regulations on rare diseases,various provinces and cities have already piloted trials to explore the drug protection mechanism for rare diseases.In the investigation of Foshan and Guangzhou,our research team found that Foshan has formed a multi-level medical security system for rare diseases,including"Pinganfo medical insurance"and medical assistance;Guangzhou′s supplementary commercial medical insurance"suisuisuisuikang"is more advanced in protecting patients of rare diseases.In this paper,through in-depth analysis of the content,characteristics and implementation effect of the drug security mechanism of rare diseases in both places,and putting forward corresponding improvement suggestions,hoping that these experiences can provide good references for the country and other provinces to formulate policies related to rare diseases.
作者
韩朦
兰娅菲
张朦
高子雯
褚淑贞
HAN Meng;LAN Ya-fei;ZHANG Meng;GAO Zi-wen;CHU Shu-zhen(Research Center of National Drug Policy&Ecosystem,China Pharmaceutical University,Nanjing Jiangsu 211198,China)
出处
《中国药物评价》
2022年第4期345-350,共6页
Chinese Journal of Drug Evaluation
关键词
罕见病
用药保障
佛山
广州
Rare diseases
Drug protection mechanism
Foshan
Guangzhou
