首页|"跨界-赋能"框架下罕见病用药保障困境治理逻辑——以Ⅰ型神经纤维瘤为例

"跨界-赋能"框架下罕见病用药保障困境治理逻辑——以Ⅰ型神经纤维瘤为例

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近年来,我国罕见病用药保障环境显著改善,部分病种从国内"无药可用"到"药品纳入基本医保",用药情况逐渐好转.本研究以Ⅰ型神经纤维瘤用药保障历程为例,在描述用药保障变化的基础上,尝试构建"跨界-赋能"解释框架,分析突破保障困境的治理逻辑.研究发现,在市场失灵的罕见病用药领域,政府通过颁布利好公共政策为市场主体赋能,有效激励市场主体发挥主观能动性,市场再次赋能其他治理主体,促使多主体跨界形成频繁互动行为,互动结果积极赋能市场主体,在一定程度上有效弥补了市场失灵,克服了罕见病用药保障的现实困境.
Governance Logic of the Dilemma in Medication Assurance of Rare Disease Under the Framework of"Cross-Border Enpowerment"——Taking the Neurofibromatosis Type 1 as a Case
In recent years,the medication assurance of rare diseases in China has been significantly improved,with some diseases transitioning from"no drug supply"to"including drugs into basic medical insurance list".The study takes the neurofibroma type 1 as a case study,constructing an explanatory framework of"cross-border empowerment"in order to analyze the governance logic of breaking through the dilemma.This study found that in the field of market failures such as rare disease drugs,the government empowers market players by enacting favorable public policies,which effectively motivates them to take the initiative,while the market empowers other governance bodies and facilitates the formation of frequent interaction behaviors among multiple players across the border.The results of the interaction positively empower market players again,which to some extent effectively compensates for the market failures,and overcomes the dilemmas of medication assurance of rare diseases.

rare diseasesmedication assurancemarket failurecross-border empowerment

龚曦、郭晋川

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中国人民大学公共管理学院 北京 100872

中国人民大学健康保障研究中心 北京 100872

北京病痛挑战公益基金会 北京 100050

罕见病 用药保障 市场失灵 跨界-赋能

2024

中国医疗保险
中国医疗保险研究会

中国医疗保险

影响因子:0.492
ISSN:1674-3830
年,卷(期):2024.(4)
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