The policy model of medical security system for rare diseases

There are 6000 to 8000 internationally recognized rare diseases, only 1% of which can be effectively treated, and most of them need life-long drug treatment, with an average annual cost of over 100000 yuan or more In the coming of international rare disease day, we will review the old articles and see the author's thinking on the medical security of rare diseases in 2015 One subject: as a quasi public goods, the government's responsibility for rare diseases can not be completely solved by patients' individuals and families, or by social charities and other organizations (China's social charities are not perfect, and it is difficult to maintain such long-term projects for a long time) Only by the intervention of the government's tangible hands can we maintain social equity The government should legislate for rare diseases and their related orphan drugs as soon as possible to protect the rights and interests of patients with rare diseases Two key points: give priority to solve the orphan drug guarantee and disease type determination scope, give priority to solve the orphan drug supply problem related to treatable rare diseases, and ensure that the rare disease patients with clear diagnosis and effective treatment can be fully guaranteed Since there are more than 6000 kinds of rare diseases in the world, it is impossible to integrate them into the security system in a short period of time Therefore, we should take the degree of social identity and national tolerance as an important basis, and gradually integrate them according to priorities Three mechanisms: financing mechanism, reimbursement mechanism and evaluation mechanism financing mechanism: according to the theoretical analysis above, it mainly comes from social medical insurance fund and public financial fund; at the same time, it can take social charity donation fund as an important supplement The government should correctly understand the high cost of rare diseases From the perspective of patients' micro individuals, the cost of rare diseases is extremely high, but from the perspective of society, due to the extremely low incidence rate, the number of rare diseases requiring high price orphan drugs is very small, compared with other medical costs, the rare diseases that need to be guaranteed are controllable For example, the incidence rate of gerschneider disease is 0.2 ‰, assuming an average annual medical cost of 1.5 million yuan per person and an average annual cost of 3 yuan per person in the whole society According to who statistics, the incidence rate in developed countries is 3 ‰, assuming an average annual medical cost of 400000 yuan per person and an average annual cost of 12 yuan per person in the whole society for malignant tumors Therefore, the social cost of rare disease security is generally less than that of malignant tumor Reimbursement mechanism: in view of the extremely expensive and long-term payment characteristics of orphan drugs for rare diseases, a small amount of personal burden will also be catastrophic medical expenses for patients and their families, and the expenses of orphan drugs for rare diseases necessary for treatment should be reimbursed in full; on this basis, reimbursement can be considered for nutrition necessary for life support Evaluation mechanism: whether the medical security system for rare diseases is effective should not only be considered from the perspective of health economics, but also be designed from the perspective of sociology In particular, social identity and tolerance of rare diseases should be taken as evaluation indicators To some extent, the social value of establishing the medical security system for rare diseases is far greater than the economic value Four levels: basic medical insurance, serious illness insurance, medical assistance, social charity four levels of security system (1) basic medical insurance: because in addition to special drugs for rare diseases such as orphan drugs, other drugs and services required for treatment of rare diseases are basically necessary to ensure survival, and should be undertaken within the scope of basic medical insurance (2) Serious illness insurance: the risk of catastrophic medical expenses incurred by families is mainly the expenses of special drugs such as orphan drugs Therefore, such drugs should be included in the medical expenses of serious illness insurance and bear part of the expenses (3) Medical assistance: the government shall arrange necessary financial funds according to financial resources to provide necessary assistance to patients with rare diseases (4) Social charity: after the first three stages of social security, the remaining medical expenses of rare diseases are not much, but there may be a certain gap, which can be solved by establishing a charity fund; if the government has sufficient financial resources, it can be considered that the charity fund, after deducting the social fund-raising funds, the part of its expenditure gap is covered by the finance.