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镰状细胞病:公平与质量问题。

Sickle cell disease: a question of equity and quality.

作者信息

Smith Lauren A, Oyeku Suzette O, Homer Charles, Zuckerman Barry

机构信息

Department of Pediatrics, Boston University School of Medicine, Medical Center, Boston, Massachusetts, USA.

出版信息

Pediatrics. 2006 May;117(5):1763-70. doi: 10.1542/peds.2005-1611.

Abstract

Thirty years ago, the first major federal legislation concerning sickle cell disease treatment was passed, resulting in the development of comprehensive sickle cell centers. We are now at another watershed moment in the treatment of this illness with the passage in October 2004 of the Sickle Cell Treatment Act, designed to substantially expand specialized sickle cell treatment programs. This legislation offers a remarkable opportunity to significantly improve health outcomes for individuals with sickle cell disease if it is implemented with a specific focus on the distinct but related issues of equity and quality. Despite major advances in sickle cell disease treatment that have occurred over the past 3 decades, important gaps exist both in the equity of government and private philanthropic support for research and in the uniform provision of high quality clinical care. This article assesses the current gaps in funding support and in the implementation of improvements in clinical care in order to suggest strategies for making optimal use of the opportunity that the new legislation presents to improve the health of all individuals affected by this disease.

摘要

30年前,第一部关于镰状细胞病治疗的重要联邦立法获得通过,促成了综合性镰状细胞病治疗中心的建立。随着2004年10月《镰状细胞病治疗法案》的通过,我们正处于该病治疗的又一个关键节点,该法案旨在大幅扩大专门的镰状细胞病治疗项目。如果这项立法在实施过程中特别关注公平性和质量这些既不同又相关的问题,那么它将为显著改善镰状细胞病患者的健康状况提供一个绝佳机会。尽管在过去30年里镰状细胞病治疗取得了重大进展,但在政府和私人慈善机构对研究的支持公平性以及高质量临床护理的统一提供方面仍存在重大差距。本文评估了当前在资金支持和临床护理改善实施方面的差距,以便提出策略,以最佳利用新立法带来的机会,改善所有受该病影响个体的健康状况。

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