Tapestry 360 Health Center, Chicago, IL, USA.
Department of Family Medicine, University of Chicago, Chicago, IL, USA.
J Gen Intern Med. 2023 Nov;38(14):3247-3251. doi: 10.1007/s11606-023-08392-0. Epub 2023 Sep 12.
Sickle cell disease (SCD) is the most common monogenetic condition in the United States (US) and one that has been subjected to a history of negative bias. Since SCD was first described approximately 120 years ago, the medical establishment has, directly and indirectly, harmed patients by reinforcing biases and assumptions about the disease. Furthermore, negative biases and stigmas have been levied upon patients with SCD by healthcare providers and society, researchers, and legislators. This article will explore the historical context of SCD in the US; discuss specific issues in care that lead to biases, social and self-stigma, inequities in access to care, and research funding; and highlight interventions over recent years that address racial biases and stigma.
镰状细胞病(SCD)是美国最常见的单基因疾病,也是经历了历史上负面偏见的疾病之一。自大约 120 年前首次描述 SCD 以来,医学界通过强化对该疾病的偏见和假设,直接或间接地伤害了患者。此外,医疗保健提供者、研究人员和立法者对 SCD 患者也存在负面偏见和污名化。本文将探讨 SCD 在美国的历史背景;讨论导致偏见、社会和自我污名化、获得医疗保健机会不平等以及研究资金不足的具体护理问题;并重点介绍近年来解决种族偏见和污名化的干预措施。