Researchs On The Establishment And Improvement Of China Rare Disease Medical Security System And Orphan Drug Policy

It is a hot topic that improve the life quality of rare disease groups and medical security system of rare disease patients.We are also striving to create equal medical resources for every citizen.Nowadays,in China,it is the primary concern of the government to closely study the speech spirit of General Secretary Xi and vigorously build a healthy 2030 national plan.As a vulnerable group,patients with rare diseases urgently need the attention from national government and public society.How to make the patients with rare diseases receive timely and sufficient treatment.Ensuring the medication of the patients with rare diseases is not only a public health governance problem,but also a key factor related to the overall well-being of the whole society.However,due to the number of rare disease patients is small and the rare disease drugs are extremely expensive.The government’s financial resources are consumed every year,and the research cost is high,also the research and development of pharmaceutical companies are limited with orphan drugs,so the enthusiasm of the research of pharmaceutical companies are poor,so it is difficult to vigorously promote the pharmaceutical companies to produce orphan drugs only through market incentives.This paper expounds the definition and characteristics of rare diseases and orphan drugs in the world,by analyzing the survival situation of Chinese rare disease patients.The comparison of consultation and treatment costs with family income,the sense of social identity and integration of rare disease patients,the satisfaction of first-class consultation,etc,which reveals the existed problems in the current China rare disease security system,and discussing how to reasonably and fairly using the government’s medical insurance catalogue and medical insurance fund.We can maximize the benefits to the patients with rare diseases from the fairness of diagnosis and treatment,the reduction of diagnosis and treatment fees,and the specialization of diagnosis and treatment,so that rare diseases patients can have the same resources and rights of consultation as the common patients.At the same time,it summarizes the rare disease policy and security model of developed countries,which gives enlightenments from four dimensions: management organizations,main laws and regulations,production incentive policies and medical security system.Last but not the least,combined with China’s own conditions and the point that need to be improved,the paper give the suggestions on system constructions,industries constrictions,social sercurity systems.