Legislative Study On The Protection Of Medical Right And Interests With Rare Patients

The protection of medical rights and interests of patients with rare diseases is related to the survival and development of patients with rare diseases and the justice of the system.In recent years,the legislation of rare diseases in our country has been paid more and more attention,and a series of laws and regulations on rare diseases have been issued,which have changed the state that can not be relied on,and played a positive role in safeguarding the medical rights and interests of patients with rare diseases.However,these regulations have a low rank and involve too narrow areas to effectively solve the problem.So far,there is no systematic legislation to protect the medical rights and interests of patients with rare diseases.The article carries on the research to the domestic and foreign rare disease patient medical treatment rights protection legislation and put forward to protect medical rights and interests of patients with rare diseases in China.The article is divided into five parts:The first part is introduction.This paper explains the background and significance of the selected topic,the research status of medical rights and interests about protection of patients with rare diseases at home and abroad,the research methods and innovations adopted in this paper.The second part is the theoretical analysis of protection of medical rights and interests for patients with rare diseases.This paper analyzes the characteristics of rare diseases from the definition of rare diseases in abroad and china to the classification of rare diseases.On the basis of the above,the article introduces the definition of medical rights and interests of patients with rare diseases and its possible scope in order to explore the legal definition and scope of medical rights and interests of patients with rare diseases.In addition,the article attributes to legislative protection of the theoretical basis of medical rights and interests for patients with rare diseases rooted in Rawls' justice theory and Daniels' health care justice theory.According to information on the Internet.The article holds that the actual basis of the legal protection of medical rights and interests of patients with rare diseases lies in solving the medical dilemma of patients with rare diseases who are difficult to diagnose,have no medicine and can't afford to take medicine,realizing the system justice,guaranteeing fair and equal competitive opportunity for the patients with rare diseases,and responding to the legislative appeal from all walks of life to meet the legislative needs of the public.The third part is the current situation of legislative protection of the theoretical basis of medical rights and interests for patients with rare diseases in China.By introducing the legislation related to rare diseases in China,it is concluded that there are some problems such as lack of basic law,insufficient incentive measures for rare drugs and insufficient medical security for rare diseases.The fourth part examines the legal status on protection of the theoretical basis of medical rights and interests for patients with rare diseases in the United States,Japan and the European Union.Through investigation to concluded priceless experience that special legislation in rare diseases should be carried out,perfect incentives should be established,the main role of government should be clarified in special legislation,and multi-financing system in special legislation should be established.The fifth part is the legislative suggestions in protecting the medical rights and interests of patients with rare diseases.In view of the problems existing in the legislation of our country,we should take the patients with rare disease as the center and formulate special laws.When making special laws,we should make clear the legal connotation of medical rights and interests of patients with rare diseases and rare diseases in our country,clarify the principles of legislation and establish the basic system of protecting medical rights and interests of patients with rare diseases in special legislation.In this system,first,establish the system of research,prevention and diagnosis of rare diseases;second,establish the system of availability of rare drugs and encourage the research and production of rare drugs through various economic or non-economic support to guarantee the supply of rare drugs;third,establish the accessible mechanism of rare drugs including the establishment of policy on the price of rare drugs with the governmental guidance price or negotiated price and the establishment of a medical security system for rare diseases,which is dominated by urban and rural residents' insurance for serious illness,supplemented by basic medical insurance,commercial health insurance,medical assistance and other social donations;fourth,clarify the relevant responsibilities of relevant institutions,including the National Health and Health Commission,the State Drug Administration and other institutions.In addition,it is necessary to make clear in the special legislation the responsibility of violating the law for the regulatory authorities and personnel to ensure that the medical rights of patients with rare diseases are fulfilled.