罕见病医疗负担对支出型贫困的影响研究

我国罕见病患者医疗负担较重,容易诱发支出型贫困。本文利用2016年中国罕见病家庭医疗负担与筹资策略调查数据,使用FGT(Foster-Geer-Thorbecke)贫困测量指数测量了家庭罕见病医疗负担及其导致的支出型贫困水平。结果发现,家庭罕见病人均医疗费用占人均收入的比重高达61. 14%,而补偿比例仅为23. 93%。罕见病医疗费用支出的致贫率超过35%,支出型贫困深度与强度指数分别为2. 81和25. 43,支出型贫困缺口与内部差异都很大。目前,罕见病家庭主要依靠非正式或个人的方式来筹集资金,政府医疗保障制度的实际减贫效果并不理想。本文的模拟测算结果显示,在基本医疗保险制度的基础上提高大病保险制度的待遇水平可以显著降低罕见病家庭的支出型贫困水平,并据此提出对应的政策建议。

The effect of medical burden of rare diseases on expenditure poverty

There are a heavy medical burden on rare disease patients and their families in China, and they tend to be trapped in expenditure poverty. Making use of the data of the survey of medical burden and fund raising strategies of families with rare diseases in China in 2016, this paper uses the FGT (Foster-Geer-Thorbecke)poverty measurement index to measure the cost of medical care and the level of expenditure poverty in families with rare diseases. The results show that the proportion of per capita medical expenses in per capita income in families with rare diseasesis up to 61.14%,whilethe compensation ratio is only 23.93%. The poverty rate of rare disease families is more than 35%, and the depth and intensity indices of expenditure poverty are 2.81 and 25.43 respectively. Moreover,the internal differences of poor families and the gap between their expenditure poverty ratesare large.At present,rare disease patients and their families mainly rely on informal or personal methods to raise funds, and the actual poverty reduction effect of the government medical security system is not satisfactory. The simulation results of this paper show that improving the treatment level of critical illness insurance system based on the basic medical insurance system can significantly reduce the expenditure poverty level of families with rare diseases.Accordingly,this paper proposes corresponding policy recommendations to reduce the medical burden and expenditure poverty of rare diseases families.