Eliminate Race-Based Epidemiologies

American biomedical care systems are profoundly and systemically racialized for historically marginalized communities, especially for Indigenous and Black communities. To address health inequities in the Black community, medicine, science, and public health offer epidemiology of disease risk centered on race. Positivist biomedical communities often espouse that Black communities have higher rates of hypertension, diabetes, heart disease, and asthma in children—which are actual inequities. However, these inequities are frequently presented without an explanation of the fundamental causes of diseases other than a person’s race or assumed poverty status because of their race. The consequence of this lack of explanation often results in indolent and inaccurate conclusions about an underrepresented community’s biological inferiority. Take, for example, Covid-19, a disease we once knew very little about. From 2020 to 2022, we watched scientists offer explanations for racialized risk,1 rebiologize racial difference,2 and offer racialized diagnoses and treatment schemas3 that ultimately biased how Black folks were cared for by healthcare providers. Racism was ever-present in care, and human-centered loving, connected care was absent.

Covid-19, like the disease ALS (amyotrophic lateral sclerosis), reflects a microcosm of American beliefs about race and disease. I focus here on a rare disease, ALS, to show how racialized conceptions of disease and care produce adverse outcomes for Black patients, their families, their communities, and the United States. In what follows, I examine how racial bias in epidemiological ways of conceptualizing disease impedes equitable biomedical care for Black people with ALS. With respect to the qualities of care developed in the introduction to this volume, I see this brief case study as an example of the disconnection of care. Meaning that the production of racialized ideologies and practices impede the delivery of care, thereby not distributing care equitably. Central to the inequitable distribution of care are the ways that systemic and structural racism racialize care in unproductive modes, both for scientists and physicians and communities, who both speculate racially when trying to understand a disease like ALS with an unclear etiology. It is imperative to remove race from the epidemiology of disease risk (or “race-based epidemiology”) and instead focus on epidemiologies of racism. This means readdressing how we use epidemiological tools and reconceptualizing how we operationalize epidemiological variables.

Scholars investigating descriptive and experimental epidemiology must deploy a critical health equity framework that forces their analyses beyond the collection of numbers vis-à-vis significant secondary data sources (e.g., birth and death certificates, patient medical records, disease registries) that alone cannot paint a complete story of disease distribution and the factors determining and mitigating that distribution. Researchers must ask who’s missing, why they are missing, and how existing paradigms of knowledge shift with the population group’s inclusion. As Lisa Bowleg writes, “If researchers conceptualize ‘race’ rather than social processes based on race (e.g., racism, racial trauma) as the source of health inequities, then every decision (e.g., the operationalization of variables, measures, hypotheses, analyses, interpretation of results, and the potential for intervention) hinges on this choice.” This choice then hinders us from identifying the many “modifiable factors such as those shaped by structural racism” that do not accurately capture all populations impacted by disease or help us locate the putative cause (or causes) of a disease.4 Epidemiologies of racism then go beyond description and observation and offer a profound elucidation on the root causes of racialized health inequities and omissions. The methods functionally stay the same, but epistemologies radically shift. This shift is essential in the rare disease space, especially for diseases like ALS.

ALS typically causes death two to five years after the first symptoms. Despite the success of the Ice Bucket Challenge, which raised over two hundred million dollars toward ALS research, relatively little is known about the fatal condition—including which populations are most at risk. Cultural representations of ALS perpetuate an image of the person living with ALS as a white man, racializing the disease as one that only affects white people. The perpetuations of ALS as a “white disease” are then passively recommitted when considering familial-genetic connections to ALS disease etiology. Although 90 percent of ALS incidence is “sporadic” (affecting anyone), 10 percent of cases occur when a family has a history of ALS. Similarly, within multinational and global trials, the inclusion of Black people is often limited. White ALS representation in clinical trial participation is over 90 percent. These data points frequently do not reflect the local population where participants are enrolled and allow for scientific fantasies and projections to create racialized epidemiological explanatory models about risk.

Close examination of how racialized diagnosis and risk become entangled with histories of biological racial differences makes equitable and inclusive interventions to improve Black health possible and demonstrates how reconnection makes unbiased care possible. This critique is not simply an exposé of how ALS care is racialized but an indictment of how racialized care produces adverse health effects like premature death precisely because of race as a lens for conceptualizing experiences of disease. Here, I trace not only these disconnections of care that make the economy of ALS care nearly impossible for Black people but also suggest that the removal of race-based epidemiologies will ensure a futurity of life for those who have been historically undervalued and underrepresented in many unique disease spaces. Rather than reducing race to a biological difference during medical decision-making and care, ALS offers a distinctive mode of animation where public ideologies and care providers can relate and reconnect to Black patients with ALS without the lens of racial science and medicine.

For decades, the ALS Association’s website declared, “93% of patients” in their ALS Patient Care Database “are Caucasian.” Early in my volunteer and research engagements with the ALS community, I could not believe this was an epidemiological truth. The more that I talked to doctors during my research, the more they would simply respond, “Black people don’t get ALS as often as Caucasian populations.” The responses I heard from doctors, scientists, physician-scientists, and nurses echoed a similar refrain. Journalistic outlets like ALS Today, ABC News, and WebMD reiterated the same statistic but restated it even more definitively: “93% of people with it [ALS] are white.”5 As the ALS Ice Bucket Challenge exploded in popularity around the world, I became even more startled at the way the statistics were visualized and communicated from entertainment communities directed at Black communities. In their article “ALS: The Disease Behind the Ice Bucket Challenge,” Black Entertainment Television offered nine ALS “facts,” noting that 60 percent of ALS cases were men and “93% are white.” Indicating that ALS impacts primarily white people suggests that a disease—with very unclear etiological causes—is a “white disease,” especially in nonacademic communities. Even more significantly, epidemiology research suggests that the risk for ALS is highest for white men between forty and sixty years old. This “fact” about ALS epidemiology was repeated consistently not only by medical providers I interviewed and scientific sources on ALS but also by Black people and their caregivers affected by the fatal disease, leading to suspicion.6

For example, consider the experience of Robert Moore. After living with ALS symptoms for nearly two years, Moore was rushed to the hospital in December 2019 after he stopped breathing on his own. Before this visit, Moore had seen countless care providers, including neurologists, pulmonologists, and an internist, for his frequent seizures and deteriorating muscle strength. Even after his family suggested to his doctors that it could be ALS after their online research, Moore’s doctor’s said, “No, it’s not. It’s not that. We just have to change his seizure medication.” After a week in the hospital, doctors diagnosed Moore with ALS. Exactly six days after his diagnosis in the hospital, Moore died from the final stages of ALS. I asked Moore’s niece why she thought it took so long for him to receive a diagnosis for his symptoms. “I heard it’s [the disease, ALS] not common in Black people,” she said. Moore’s experience with biomedical care demonstrates that scientific epidemiological accounts do not always account for community stories. Especially community stories and experiences that have historically been—and continue to be—dismissed, ignored, and rendered invisible by biomedicine. While Moore’s family did believe that ALS does not affect Black people, this ideology ceased once they connected the dots through their own research and symptomology. What results is an example of a false epidemiological looping mechanism that affects not only popular understandings of the disease but also the perceptions of clinicians and persons living with ALS, I learned.

Beliefs about the epidemiology of race in ALS also seep over into ALS diagnoses of Black people with ALS, keeping people from timely diagnoses because of racialized assumptions. Rosa Turner, a sixty-four-year-old Black woman with an ALS diagnosis, asked me, “Is there a test for this shit?” as I drew her blood for a clinical research study. “This shit” referred to her ALS diagnosis that took years to receive. Turner lamented how long it had taken her to receive an ALS diagnosis despite going to more than ten medical providers. Research on Black people’s relationship to biomedicine overwhelmingly shows that Black women like Turner do not access medical care because of histories of scientific experimentation and patient mistrust,7 but many patients I interviewed expressed an ardent willingness to confront the medical system to find out about their symptoms. Turner shared with me that “I literally asked the doctor one time, ‘Is there a test for this shit?’ And he told me, ‘No ma’am. Not for you.’ ’Cause he said it didn’t run in my family.” When I asked if she had inquired if others in her family had ALS, she joked: “Hell no!”

The doctor’s failure to offer Turner a test had real implications for her diagnosis, care, and perception of medicine. But also, this brief moment serves as an example of how not making connections leads to failed care. The clinical and biological presentations of “familial ALS” and sporadic ALS are often quite related;8 however, the onset of symptoms of familial ALS can sometimes begin earlier. What struck me about her doctor telling her the test was “not for” her was that the declaration relied on a racialized assumption that she didn’t have familial ALS because she wasn’t white—regardless of the fact that researchers have noted that genetic testing may be helpful in better understanding ALS disease progression and can also help differentially diagnosis ALS from other neurodegenerative diseases, such as Alzheimer’s, Parkinson’s, Spinal Muscular Atrophy and other neuromuscular diseases, all of which are common clinical mimics of ALS. While genetic testing for ALS is not typical for diagnostic purposes, nearly all the white ALS participants in my study had been offered genetic testing during or after their formal ALS diagnosis. And some of these participants had the same doctor as Turner. How could the trajectory of her care have changed if racialized assumptions about her genetics had been avoided? Without these stories and experiences from people who are assumed to not be “at risk” for ALS, the epidemiology of race in ALS can lead to harmful care, whether or not it is intentional.

Even at the U.S. Department of Veterans Affairs (VA) hospitals, where care resources for ALS are more extensive because of ALS’s connection to those who have served in the military, care can still be disrupted and disjointed when assumptions about ALS are racialized through the creation of connections between race and disease categories. Given that their benefits are robust and cover much of their needs, most veterans with ALS report being content with the care and support offered by the VA. This is partly because the VA provides more connections to other persons with ALS in the community through clinic visits. But also because many VA systems have transparent processes and systems to facilitate a person with ALS’s desired needs around their clinical care and contribute financially for paid home health care, home modifications, resources toward an ADA-accessible car, and even special monthly compensation. For example, John Williams, a Black man in his late sixties, was entitled to receive monthly support checks, insurance benefits (including prescriptions, medical supplies, and prosthetic items), home improvement and structural housing grants, automobile grants, adaptive equipment, aide allowances to pay for care providers, and much more. The VA also offered him ALS-specific clinical care for veterans to improve continuity of care between specialists (e.g., neurologist, pulmonologist, physical therapist, occupational therapist, speech therapist, and social worker) to holistically support the person with the embodied challenges that the disease presents. Despite the robust care and economic benefits, Williams and his wife, Janice, were less than thrilled with the care they had received at the VA because of how arduous the diagnostic process had been.

Janice: You know, it’s like I feel like we [Black people] . . . just get, just pushed through the system . . . in the shuffle. No one takes time to explain anything where you can understand it. You know, he has to understand . . . I got to interpret it for him, when you’re [referring to clinicians at Truman Memorial Hospital] the professional, I feel like you ought to be, uh, telling us what we both can understand it. The only thing that helps me is the fact that I work in intensive care and I see and hear a lot of things. But just the average Joe . . . [. . .  .] When I took him to just an appointment, they put the thing on his arm and the thing start squeezing his arm. He’s like, “What, what, what’s going on?” I said, “Babe, the machine is taking your blood pressure.” My husband, last time he is at a doctor or the doctors that he’s been going to, they had to . . . [hesitates]

Chelsey: Pump it up.

Janice: Yeah. So I mean, something that simple . . . he didn’t know what that thing was doing. So, I was able to explain to him what it was doing. You know what I’m saying? But he just . . . People just get caught up, girl, in the shuffle.

Despite the generous benefits they qualified for, Janice felt the people there to help her and her husband needed to communicate with them more effectively, which offers an example of failed connection-making. I asked Janice if she thought race was a factor in how the staff related to her and Williams, and she laughed, “Race is always a factor.”

Race is always a factor, but racism is an even stronger factor and is rooted in Black people with ALS becoming “caught up in the shuffle.” However, being “caught up in the shuffle” has deadly consequences. On average, Black people with ALS live shorter lives by six months compared to white people with ALS. As Moore discussed, I knew of six other Black people with ALS who died days or weeks after their formal ALS diagnosis. Our current epidemiological methods that foreground race would not capture Black ALS sufferers like Moore. While ALS is a terminal disease, if diagnosed early there are remarkable technologies and support services to extend an individual’s life. Yet, because of the racist assumptions that go into the epidemiology of ALS, Black people are often assumed to not be at risk for the disease and are subsequently undiagnosed. An epidemiological focus on how racism contributes to death—and especially early deaths—could capture these experiences and move away from the harmful distraction of race as a biological difference. It would also serve as a form of care that animates and treats Black patients with ALS with full autonomy, respect, and cultural attunement.

Through ethnographic accounts that value Black people’s stories as data, researchers can demonstrate significant racial disparities in ALS experiences, and the racialized risk assessments of ALS can be shown. However, it requires looking past race-based epidemiology to find persons living with ALS like Moore, Turner, and Williams, whose racialization by their clinical providers left them without treatment and missing from recognized records, registries, and clinics for ALS patients. Instead, epidemiologies of racism and the risk of premature death point to how individuals and their families slip through the U.S. healthcare system. “Attention to the historical and contemporary processes by which populations are sorted into hierarchical groups with different degrees of access to the resources of society,” writes Leith Mullings, “shifts our analysis to racism rather than race . . . and to resource distribution as the larger context that constrains and enables what appears as voluntary lifestyle choices.”9 Like Mullings’s “Sojouner Syndrome,” which demonstrates the way that the intersections of racism and sexism in the lives of Black women cannot be wholly understood by looking separately at the risk factors of race, class, and gender, ALS is no different but requires us to look beyond the “Black health issues” or medical issues/diseases that medical anthropologists and health scholars tend to compartmentalize Black health. This skewed reality is especially true when a real risk factor of racism is a premature death, often as a result of limiting, disconnected, and disconnecting health care.

Without diagnostic accuracy and equitable health care, inequities lead to further health disparities and “health omissions,” the process of falling into biologically deterministic thinking that omits certain individuals from diagnosis, care, or research studies. Exposing these biases in ALS epistemic paradigms pushes biomedical researchers to reimagine how race and class operate in niche diseases like ALS in the United States. This reimagining disrupts assumptions that Black people are exclusively affected by “Black-only diseases,” like diabetes, hypertension, sickle-cell, and certain cancers. In contrast, white people are the only group susceptible to a myriad of unknown, life-limiting diseases accepted as worthy of research, innovation, treatment, and a cure. The particular localities of racism and bias are embedded in scientific inquiry and systems of care that overwhelmingly affect the poor and the marginalized.

“Interventions alone will not undo racism,” writes Dána-Ain Davis.10 Instead, new scripts must be written, and medical worlds must be co-constructed with historically marginalized populations. The tools we have do not work to understand the depths of anti-Black racism. By focusing on epidemiologies of racism, we can better improve care and sustain life even for people with terminal diseases like ALS. When science, medicine, and public health can better articulate and locate medical racism, we will see that our existing tools for fixing the race issue in biomedicine and science would be better served by focusing on the root causes. One of the real culprits of ineffective care and late diagnoses is anti-Black racism and how it functions not just to create disparity but in how it abuses, gaslights, and ignores the symptoms and experiences of Black people seeking care by perpetuating racialized disease ideologies and disconnected forms of care.

Cultural beliefs and bias affect how we create knowledge around unknown diseases, and “white supremacy still functions to induce harm today, everywhere we are in America,” asserts Yesmar Oyarzun.11 Racialized care also creates health inequities and exacerbates existing systemic inequalities caused by anti-Black racism and white supremacy. The opposite of race-based epidemiology is not developing “race”-specific diagnostic formulas and experiments because the socially constructed nature of race suggests that these methods would be erroneous and inutile. Better care for Black people—and all people—is attuned to how histories of racial science and biomedicine have shaped how medicine and public health are presently conducted. A case for the epidemiology of racism is centered on a more honest, radical, and loving form of care for Black communities in the United States. Through this new animation, a reconnection of care is made possible toward better health and, ultimately, more prolonged survival to make ALS a livable disease.