上海罕见病用药保障现状研究

A study on the current status of drug security for rare diseases in Shanghai

该文通过梳理上海罕见病用药保障的整体情况,分析目前存在的问题,阐述了罕见病用药保障的价值和可行性。在新政策形势下,上海应充分发挥经济基础好、社会力量强、管理经验足等优势,积极探索构建由政府指导,整合医疗保障、社会救助、慈善帮扶等各方资源,集全社会力量的罕见病用药综合保障模式。为加快探索建立政府支持、社会力量充分参与的罕见病救助专项基金,分阶段推进罕见病用药保障,加强罕见病用药相关配套机制建设,支持罕见病相关医学科技创新,进而为国家层面和其他地区提供经验参考。

This study systematically reviews the overall situation of drug security for rare diseases in Shanghai,analyzes the existing problems,and expounds the value and feasibility of drug security for rare diseases.This study also proposes that under the new policy situation,Shanghai should give full play to the advantages of good economic foundation,strong social power and sufficient management experience,and actively explore a comprehensive drug security model of rare disease guided by the government,integrate resources of medical security,social assistance and charity support,and gather the strength of the whole society.It is necessary to accelerate the exploration of the establishment of a special fund for rare disease medication with government guidance and full participation of social forces.Improve drug security for rare diseases by stages,enhance supporting mechanism,support medical science and technology innovation,so as to provide reference for the country and other regions.