Study On The Status And Problems Of Rare Diseases Guaranteed By Customized Commercial Medical Insurance In Shandong Province

Background:Rare diseases are serious,with complex etiology and difficult diagnosis.Only less than 10%of rare diseases in the world have approved drugs or clear treatment plans,which seriously endanger people’s health.There are about 20 million patients with rare diseases in China,and the cost of treatment is usually up to one million,which causes great economic burden for families and society.China’s basic medical insurance is broad but not deep,there is a security gap,it is urgent to improve the multi-level medical security system.Customized commercial medical insurance(hereinafter referred to as "customized commercial insurance")is a beneficial attempt to establish a multi-level medical security system in China,and will become a new direction to explore the medical security of rare diseases in the future.By including rare disease drugs into the guarantee responsibility of special drugs or setting a separate list of rare disease drugs,Shandong’s 16 customized commercial insurance focuses on high-value rare disease drugs outside the list,which provides experience for other provinces and cities to provide multi-level medical insurance for rare diseases.Objective:Taking Shandong Province as an example,this study analyzed the status quo of customized commercial insurance for rare diseases,clarified the stakeholders involved in the process and their interest relationships,understood the existing problems of customized commercial insurance for rare diseases from the perspective of stakeholders,and put forward specific suggestions to improve the multi-level medical security system for rare diseases.To provide feasible suggestions on improving and adjusting medical insurance policies for serious diseases.Methods:In this study,16 types of customized commercial insurance from Shandong Province under the guidance of the government were selected as the research object,and quantitative and qualitative methods were adopted to analyze the status quo and existing problems of customized commercial insurance for rare diseases.First of all,the literature research method is used to collect the basic information,protection benefits and organization and operation of customized commercial insurance through academic journal websites,official websites of government departments,and public accounts of customized commercial insurance in various cities.Secondly,the objective sampling method was adopted to select D city and R city in Shandong Province as samples.With reference to the analysis framework of universal health coverage,the data of insurance participation and claims of customized commercial insurance,including rare disease patients,were collected from the three dimensions of population coverage,service coverage and cost coverage.Then,Mitchell scoring method and Delphi method are used to define the stakeholders and their types of customized commercial insurance.Finally,based on stakeholder theory,semistructured in-depth interviews are conducted with stakeholders of customized commercial insurance in the form of one-on-one online meetings.The quantitative data were analyzed by descriptive statistics,such as frequency,frequency,mean value,standard deviation and coefficient of variation.The topic analysis method was used to analyze the interview data.Results:(1)The customized commercial insurance launched in 16 cities in Shandong has set up a list of rare disease drugs,and each commercial insurance covers 12 kinds of rare disease drugs on average;The universal insurance plan for rare diseases is 10,000 yuan,60%-70%reimbursement,and 300,000 yuan maximum.(2)The customized commercial insurance in City D and City R covers fewer rare patients,provides more complete services,and the reimbursement of the overall cost of rare patients is less than 2%of the total expenditure.(3)Provincial/municipal Medical Security Bureau,Health Commission,China Banking and Insurance Regulatory Commission,main underwriting company,other counderwriting companies,designated hospitals,designated pharmacies,drug manufacturers and patients with rare diseases are all stakeholders of customized commercial insurance.Among them,the provincial/municipal Medical Security Bureau,China Banking and Insurance Regulatory Commission and the main underwriting company are identified stakeholders;The health commission and other co-insurers are anticipatory stakeholders;The rest are potential stakeholders.(4)Rare disease insurance is faced with two major problems:inadequate connection of multi-level insurance system and sustainable development of customized commercial insurance;Two suggestions were made to optimize the medical security for rare diseases:first,to improve the multi-level medical security system for rare diseases under the framework of the existing basic medical insurance;Second,focus on the customized guarantee list of rare disease drugs and encourage the commercial insurance to explore payment schemes.Conclusions and Suggestions:Although 16 cities in Shandong have launched customized commercial insurance under the guidance of the government,and set up a separate liability for rare disease protection by setting up a list of rare disease drugs,the data of commercial insurance in the two cities show that there is still room for improvement in the level of protection.Customized commercial insurance involves 9 stakeholders with different roles,advantages and interest demands.In the process of optimizing the insurance scheme for rare diseases,it is necessary to balance the relationship and interest demands among stakeholders.The key problems of customized commercial insurance for rare diseases lie in the lack of cohesive design of macro-level protection system and the common problem of sustainable development of commercial insurance itself.To achieve a breakthrough at the system level,improve the multi-level medical insurance for rare diseases,pay special attention to the guarantee of rare diseases drugs,and clarify the access mechanism of commercial insurance of rare diseases drugs are the ideas to solve the problem of rare diseases protection.It is suggested to base on top-level design and encourage commercial insurance to participate in rare disease protection.Linkage of multiple stakeholders to help product sustainability;Improve the service chain of designpublicity-insurance-claim settlement;To raise public awareness of commercial insurance and rare diseases.