Black Patients with ALS Face Significant Diagnostic Delays, Large Study Confirms

Shaw, Gina

doi:10.1097/01.nt.0000734792.14999.ad

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“…Kimberly lamented the plodding pace of the hospitalization that finally led to Rosalie's diagnosis of ALS. Some literature has suggested that doctors assume ALS is a predominantly white man's disease and thus do not consider ALS diagnosis for other types of patients; this leads to diagnosis delays and premature death (Brand et al 2021;Carter 2021aCarter , 2021bShaw 2021). I asked Kimberly about the timeline of her mother's formal ALS diagnosis and she explained: How much would having an earlier diagnosis have changed Rosalie's life?…”

Section: Rosalie's Doubt and Denialmentioning

confidence: 99%

“…Instead, they serve as examples of how doubt is a fundamental feature of anti-Black medical gaslighting. As noted earlier, some ALS researchers and clinicians are explicitly biased toward believing that Black people cannot contract certain diseases (Hogarth 2017;Washington 2006), including ALS (Carter 2021a(Carter , 2021bShaw 2021). There is more than a misdiagnosis at work in Rosalie's case, although the misdiagnosis is an important feature.…”

Section: A Co-constitutive Racial and Gendered Analysismentioning

confidence: 99%

“…Some literature has suggested that doctors assume ALS is a predominantly white man's disease and thus do not consider ALS diagnosis for other types of patients; this leads to diagnosis delays and premature death (Brand et al. 2021; Carter 2021a, 2021b; Shaw 2021). I asked Kimberly about the timeline of her mother's formal ALS diagnosis and she explained:

Chelsey : She just never got the diagnosis?

Kimberly : She never got the diagnosis.…”

Section: Rosalie's Doubt and Denialmentioning

confidence: 99%

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Gaslighting: ALS, anti‐Blackness, and medicine

Carter

2022

Feminist Anthropology

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Gaslighting has become a popular term to describe experiences of doubt and manipulation that make individuals or groups feel like their lived realities are not valid. Much of the theoretical work utilizing gaslighting as an analytic can be found in psychology literature or feminist domestic violence discussions. More recently, political scientists, philosophers, and sociologists have noted the structural, political, economic, and social processes that enable gaslighting to move beyond an interpersonal dynamic between women and their abusers. This essay extends these arguments through a Black feminist anthropological lens to examine how anti‐Black medical gaslighting functions structurally within medical systems, individually through implicit biases held by healthcare workers, and collectively through cultural norms. Despite Black patients’ learned mistrust of the medical system and often after multiple failed attempts to receive care or answers, ethnographic vignettes reveal that Black people with amyotrophic lateral sclerosis (ALS) and their caregivers continue to fight to be heard by the medical establishment despite being gaslit.

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Section: Rosalie's Doubt and Denialmentioning

confidence: 99%

Section: A Co-constitutive Racial and Gendered Analysismentioning

confidence: 99%

Chelsey : She just never got the diagnosis?

Kimberly : She never got the diagnosis.…”

Section: Rosalie's Doubt and Denialmentioning

confidence: 99%

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