迈向伦理药物定价：欧洲孤儿基因组治疗基金。
Towards ethical drug pricing: the European Orphan Genomic Therapies Fund.
机构信息
Institute for Medical Humanities, University Hospital Bonn, Venusberg-Campus 1, D-53127, Bonn, Germany.
出版信息
Gene Ther. 2024 Jul;31(7-8):353-357. doi: 10.1038/s41434-024-00452-2. Epub 2024 Apr 24.
Abstract
An increasing number of novel genomic therapies are expected to become available for patients with rare or ultra-rare diseases. However, the primary obstacle to equal patient access to these orphan genomic therapies are currently very high prices charged by manufacturers in the context of limited healthcare budgets. Taking into account ethical pricing theories, the paper proposes the implementation of a pricing infrastructure covering all European member states, which has the potential to promote distributive justice while maintaining the attractiveness of genomic therapy development.
摘要
预计将有越来越多的新型基因组疗法可用于治疗罕见病或超罕见病患者。然而，目前在有限的医疗预算背景下，制造商收取的高昂价格是这些孤儿基因组疗法平等惠及患者的主要障碍。本文考虑到伦理定价理论，提出了实施涵盖所有欧洲成员国的定价基础设施的建议，这有可能在保持基因组疗法开发吸引力的同时促进分配公正。
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