目的: 梳理普惠险对罕见病用药的保障模式,并评估将罕见病纳入保障范围对普惠险产品运营的影响,为进一步探究普惠险参与罕见病保障的可持续性的发展路径提供经验证据。方法: 通过甄选不限制罕见病既往症的62款产品,归纳总结普惠险对罕见病用药的保障模式。同时基于保险精算定价技术,选取5款具有临床特殊疗效、患者用药需求迫切的罕见病高值药以及与之对应的普惠险产品进行保障成本分析。结果: 目前普惠险产品对罕见病的保障模式主要包括医保目录内保障、特药保障、医保目录外住院保障与其他保障。普惠险在保障罕见病方面具备一定的可持续性。结论: 普惠险能在一定程度上弥补罕见病患者的保障缺口,但绝大多数产品对罕见病的保障水平仍存在较大提升空间,未来应重视优化普惠险的产品保障责任。在充分考虑当地医保政策与罕见病药物价格等因素前提下,普惠险将罕见病纳入保障范围后,可以通过保证一定的参保率与设置合理的赔付标准,有效利用大数法则平衡运营风险,从而实现可持续性。

Objective: To summarize the guarantee mode of inclusive health insurance for rare diseases, and evaluate the impact of including rare diseases into the guarantee scope on the operation of inclusive health insurance, as to provide empirical evidence for further exploring the sustainable development path of inclusive health insurance for rare diseases. Methods: The guarantee mode of inclusive health insurance for rare diseases is summarized by selecting 62 products that does not limit the pre-existing conditions of rare diseases. Based on actuarial pricing technology, 5 high-value drugs for rare diseases with special clinical efficacy and urgent drug demand of patients and their corresponding universal benefit products with prominent insurance coverage are selected to conduct insurance cost analysis. Results: At present, the guarantee modes of inclusive health insurance for rare diseases mainly include insurance coverage in the medical insurance catalog, special drug coverage, hospitalization insurance coverage outside the medical insurance catalog and other coverage. Inclusive health insurance has sustainability in protecting rare diseases. Conclusion: Inclusive health insurance can make up for the protection gap of patients with rare diseases to a certain extent, but there is still a large room for improvement in the protection level of most products for rare diseases, and emphasis should be placed on optimizing the product protection responsibility of inclusive health insurance in the future. On the premise of fully considering local medical insurance policies and drug prices for rare diseases, inclusive health insurance can effectively balance operational risks by ensuring certain coverage rate and setting reasonable compensation standards, so as to achieve sustainability.