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助力应对罕见病的高昂成本。

Helping to manage the high cost of rare diseases.

作者信息

Hesselgrave Barbara L

出版信息

Manag Care Q. 2003 Winter;11(1):1-6.

PMID:12790059
Abstract

The recent innovations in electronic technology, discoveries in biotechnology research and changes in FDA policy have resulted in the fast-growing market of specialty pharmaceuticals. These drug agents offer treatment (where there was often none) for patients with rare, chronic diseases such as pulmonary hypertension, Gaucher disease, hemophilia and others. The new drug therapies are expensive, with an annual average cost of $71,000 a year, and often require specialized handling and administration. In response to market need, a new service sector called specialty pharmacy has emerged to manage these therapies. The specialty pharmacy provides services for specialized drug delivery and handling, patient education, drug administration, treatment oversight, and reimbursement assistance. These services assist healthcare providers and payors to enhance quality care and reduce the administrative burden of managing treatments for patients with rare disease.

摘要

电子技术的最新创新、生物技术研究的发现以及美国食品药品监督管理局(FDA)政策的变化,导致了专科药物市场的快速增长。这些药物为患有肺动脉高压、戈谢病、血友病等罕见慢性病的患者提供了治疗(过去常常无药可治)。新的药物疗法价格昂贵,年均成本为每年71,000美元,而且通常需要专门的处理和给药。为满足市场需求,一个名为专科药房的新服务部门应运而生,以管理这些疗法。专科药房提供专门的药物递送和处理、患者教育、药物给药、治疗监督及报销协助等服务。这些服务有助于医疗保健提供者和付款人提高护理质量,并减轻管理罕见病患者治疗的行政负担。

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引用本文的文献

1
The cumulative incidence and trends of rare diseases in South Korea: a nationwide study of the administrative data from the National Health Insurance Service database from 2011-2015.韩国罕见病的累积发病率和趋势:基于国家健康保险服务数据库 2011-2015 年行政数据的全国性研究。
Orphanet J Rare Dis. 2019 Feb 18;14(1):49. doi: 10.1186/s13023-019-1032-6.
2
Genetic counseling throughout the life cycle.贯穿生命周期的遗传咨询。
J Clin Invest. 2003 Nov;112(9):1280-6. doi: 10.1172/JCI20170.