哥伦比亚罕见病医疗保障制度研究及其启示

Enlightenment from the Study on the Medical Security System for Rare Diseases in Colombia

罕见病保障是我国社会关注的热点话题。近年来,随着医疗保障体系的不断完善,罕见病保障能力得到提升,医保目录已纳入多种罕见病用药,但在立法、制度建设等方面仍存在不足,患者治疗负担较重。哥伦比亚通过立法建立了独立于公共医保的“最高预算”基金,对罕见病患者进行保障。文章在构建罕见病政策分析框架的基础上,从“制度目标、制度设计、制度效能”3个层面剖析了哥伦比亚罕见病保障制度,基于保障经验,建议我国从优化登记系统、完善立法体系与探索专项基金保障3个方面完善罕见病保障体系。

The rare disease protection is a hot topic in China.In recent years,with the improvement of the medical security system,National Reimbursement Drug List(NRDL)has included a variety of rare disease drugs and the medical security of rare disease has been improved.However,there are still some"exobitant price"drugs not included in NRDL.Colombia passed legislation creating a"maximum budget"fund,separate from public health insurance,to protect patients with rare diseases.To explore the rare diseases security system in Colombia,the policy analysis framework for rare diseases are constructed from the aspects of system objective,system design and system efficacy"to analyze the rare.Based on the security experience,it is suggested to improve the rare diseases security system in China from optimizing the registration system,perfecting the legislation system and exploring independent guarantee.