国家级罕见病专项基金
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全国政协委员孙洁:建议设置国家级罕见病专项基金
Jing Ji Guan Cha Wang· 2025-09-21 08:29
Core Viewpoint - The establishment of a national rare disease special fund is essential to address the payment challenges associated with rare disease medications, as highlighted by the increasing number of drugs included in the medical insurance catalog but facing high costs that limit accessibility [1][2]. Group 1: Current Situation and Challenges - The Chinese government has shown increasing attention to rare diseases, with the introduction of the first and second batches of rare disease catalogs in 2018 and 2023, respectively [1]. - Despite the growing number of rare disease medications approved for inclusion in medical insurance, high-cost drugs remain difficult to incorporate into the catalog, leading to a growing contradiction between the availability of drugs and payment guarantees [1][2]. Group 2: Local Initiatives and Their Impact - Zhejiang Province established a rare disease medication guarantee special fund in December 2019, serving as a model for other regions and introducing a personal payment cap to alleviate patient burdens [2]. - Jiangsu Province has proposed a clear mechanism for rare disease medication guarantees, emphasizing a multi-channel funding approach involving government, market entities, and charitable organizations [2]. Group 3: Proposed Solutions and Benefits - The establishment of a national rare disease special fund could enhance the fairness and efficiency of medical insurance coverage for rare diseases and innovative drugs, ensuring that urgently needed foreign drugs reach domestic patients [3]. - A special fund would diversify funding sources and engage social resources in supporting rare disease medication, thus not relying solely on existing medical insurance funding models [3]. - Increasing public awareness of rare diseases and supporting local innovation in drug development are additional benefits of establishing a special fund [3].