我国罕见病医疗保障制度优化路径研究--基于疾病负担公平视角

Research on the Optimization of Medical Security System for Rare Diseases:Based on the Perspective of Disease Burden Equit

目的:以血友病为例,研究揭示罕见病家庭疾病负担状况与特征,为优化罕见病医疗保障政策提供思路。方法:用Link5等级表达疾病负担程度,采用描述性统计及单因素方差分析方法。结果:居住非省会城市、选用相对便宜药物、药物可及性差、参保居民医保、未注册门诊保障、保障种类相对少的患者疾病负担更重(P<0.05)。结论及建议:罕见病医疗保障政策存在明显的地区及人群间不平衡,进而影响患者药物可及性、可负担程度以及药物选用、治疗模式决策,降低脆弱群体健康福利,建议针对罕见病实行省级统筹,统一基本医保政策推进制度公平,探索患者自付止损机制实现稳定预期,引导高值药品纳入商保目录,完善多层次医疗保障制度体系。

Objective:Taking hemophilia as an example to study the status,characteristics and influencing factors of family disease economic burden of rare diseases,and to provide countermeasures for optimizing the medical insurance policy of rare diseases.Methods:Link5 is used to express the degree of disease burden and descriptive statistics and one-way analysis of variance are used as methods.Results:The incidence of CHE in families of patients with rare diseases is more than 50%.Patients with non-provincial capital cities,relatively cheap drugs,poor accessibility,resident health insurance,unregistered outpatient insurance,and relatively few types of insurance have a heavier disease burden(P<0.05).Conclusion&Suggestions:The risk of CHE for families is high,and there is obvious regional and institutional imbalance,which further affects the accessibility and affordability of medicines,as well as the decision-making of drug selection and treatment mode.We should promote the construction of a special medical insurance system at the provincial level,give the right to choose medical insurance,establish an annual stop-loss mechanism,include universal health insurance in the national negotiating sequence for rare drugs,and consolidate a multi-tiered medical security system.