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Ethical Perspectives on Treatment Options With Spinal Muscular Atrophy Patients

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source: Annals of neurology

year: 2022

authors: Yeo CJJ,Simmons Z,De Vivo DC,Darras BT


Since 2016, three innovative therapies for spinal muscular atrophy have changed the face of disease. Although these therapies often result in remarkable improvements in infants and children, benefits in adults are modest and treatment is not curative. Concerns have been raised about the enormous costs of these medications, the ultimate burden to taxpayers, and the costs to society of withholding treatments and sacrificing or disadvantaging some individuals. Physicians are best positioned to serve our patients by carefully considering the costs, benefits, implications for quality of life, and the interplay of these factors within the framework of core ethical principles that guide clinical care. This article is protected by copyright. All rights reserved.

organization: Boston Children's Hospital, Harvard Medical School, Boston, MA, USA.

DOI: 10.1002/ana.26299

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