Racial Disparities Reported in the Initial Presentation of ALS


A retrospective study presented at the 2022 Annual NEALS Meeting reported health disparities in the initial presentation of Black patients with ALS in comparison with White patients.

Kelly Gwathmey, MD, assistant professor of neurology, VCU

Kelly Gwathmey, MD

In a recent retrospective study conducted by those at Virginia Commonwealth University (VCU) Health, health disparities such as functional capacity and upright vital capacity (UV) were identified in the initial presentation of Black vs White patients with amyotrophic lateral sclerosis (ALS).1 The report captured the negative impact that social determinants of health have on Black patients with ALS in their care and clinical outcomes in the United States.

Eighteen Black patients with ALS reported an initial ALS functional rating scale (ALSFRS-R) ranged from 19 to 40 with a mean of 33. In addition, the initial VC ranged from 23% to103% with a mean of 59% for 25 Black patients with ALS. In comparison, 108 white patients with ALS had an initial ALSFRS-R that ranged between 19 and 48, with a mean of 39.7. Notably, the initial VC ranged from 35% to143% and a mean of 82% for 117 white patients.

At the 2022 Annual Northeast Amyotrophic Lateral Sclerosis (NEALS) Consortium Meeting, held November 1-3, in Clearwater Beach, Florida, coauthor Kelly Gwathmey, MD, assistant professor of neurology, VCU, and colleagues presented the data in an abstract platform session. “VCU Health ALS Clinic team is establishing a program to partner with community based primary care physicians to educate and offer immediate access to a neuromuscular neurologist to hopefully shorten the diagnostic delay of all patients,” Gwathmey and colleagues wrote.

The study, which ranged from 2016 to 2022, recruited 32 Black patients with ALS who met inclusion criteria (women, n = 12; men, n = 20; bulbar-onset, n = 9; limb-onset, n = 23). During that time, the clinic also enrolled 123 White patients with ALS (women, n = 57; men, n = 76; bulbar-onset, n = 26; limb-onset, n = 107).

All noted that, “In this study, during this time, VCU Health had 17 Black patients enrolled, mean ALSFRS-R of 26 and mean VC of 65%. There were 124 White patients enrolled with mean ALSFRS-R of 33 and mean VC of 76%.”

Patients were excluded if they did not follow up after the first visit or had inadequate referral records that had outlined a previous evaluation.

In a previous database review study coauthored by Christina Fournier, MD, MSc, and colleagues, findings showed that Black patients with ALS had longer median survival, longer diagnostic delay, lower baseline ALSFRS-R and vital capacity compared to white patients.2 The review included 1,298 patients with ALS (Black, n = 203; white, 1,095) between 1997 and 2020 at the Emory ALS Center in Atlanta, Georgia. Although Black patients had a longer median survival, race was not an independent predictor of survival when controlling for age at symptom onset, bulbar onset, and C9orf72 positivity.

Gwathmey et al noted that future research, “is needed to understand the barriers to diagnosis in the Black ALS community which may include misdiagnosis, disinterest or fear of seeking medical attention, and financial obstacles.” In addition, further investigations are needed for identifying the underlying causes of racial differences in patients with ALS.2

Click here for more coverage of NEALS 2022.

1. Brockenbrough P, Cox S.Z, Gebhardt M, Fan Q, Gwathmey K. A Retrospective Review of Racial Disparities in Initial Presentation of ALS Patients. Presented at: 2022 NEALS Consortium Meeting, November 1-3; Clearwater Beach, Florida. Abstract 118
2. Brand D, Polak M, Glass JD, Fournier CN. Comparison of Phenotypic Characteristics and Prognosis Between Black and White Patients in a Tertiary ALS Clinic. Neurology. 2021;96(6):e840-e844. doi:10.1212/WNL.0000000000011396
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