Ethical Perspectives on Treatment Options with Spinal Muscular Atrophy Patients

Crystal J.J. Yeo, Zachary Simmons, Darryl C. De Vivo, Basil T. Darras

Research output: Contribution to journalArticlepeer-review

9 Scopus citations

Abstract

Since 2016, 3 innovative therapies for spinal muscular atrophy (SMA) have changed the face of the 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 (QOL), and the interplay of these factors within the framework of core ethical principles that guide clinical care. ANN NEUROL 2022;91:305–316.

Original languageEnglish (US)
Pages (from-to)305-316
Number of pages12
JournalAnnals of Neurology
Volume91
Issue number3
DOIs
StatePublished - Mar 2022

All Science Journal Classification (ASJC) codes

  • Neurology
  • Clinical Neurology

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