OMOIGUI: Sickle Cell Disease and the Medicalization of Blackness
The difference between an “A” and a “T” has brought a lifetime’s worth of pain and suffering to millions of people of African descent, both in the developing world and in the United States. The impact on the quality of life of people who suffer from sickle cell disease is palpable. I know because I’ve watched members of my own family experience it, and the specter of this genetic disorder has loomed over me, a confirmed carrier of sickle cell disease, ever since I can remember. Caused by a mutation in the hemoglobin-Beta gene on chromosome 11, the disease disrupts vital blood flow to organs and tissues. The mutation creates the stiff, sickle-shaped blood cells that pile up and block vessels for which it is named. It results in lung tissue damage that can lead to acute chest syndrome, pain episodes, and strokes.
When crisis strikes, we trust in our doctors and other medical professionals to provide us with the best healthcare they can. Yet, sadly, racism’s reach is unlimited. It even colors the ways that doctors perceive and treat us. Patients suffering from this disease that predominantly affects people of color know this truth all too well. Health inequity hinders access to care and funding, and the intersections of race and class come into play. Conversely, diseases like cystic fibrosis, which primarily affect white people, receive 11 times more National Institute of Health funding and 440 times more funding from national foundations.
In an interview with 60 Minutes, Jennelle Stephenson describes the pain in vivid detail: “It’s terrible, it’s horrible… [Pain] Everywhere. My back, my shoulders, elbows, arms, legs, even my cheekbones, just pain. It’s a very sharp, like, stabbing, almost feels like bone-crushing pain. Feels like someone’s kind of constricting your bones, and then releasing constantly.”
The excruciating pain that afflicts patients like Jennelle often goes untreated. In light of the opioid crisis and the subsequent crackdown on pain medication prescriptions, doctors are wary about the opioids sickle cell disease patients request to manage their pain. This is compounded by racial disparities in pain management. In a National Academy of Sciences study, researchers found that black Americans are “systemically undertreated for pain relative to white Americans.” However, medical treatment refracted through the lens of race is not only the product of explicitly racist individuals but also of implicit biases that lie far beneath the surface. Conscious and unconscious bias result in disparities in access to resources and care.
Commonly believed to be purely rational and objective, medicine is an inherently hegemonic discourse. In reality, it is rooted in the cultures and value systems of those who practice it. Traditionally conceptualized as a “black disease,” sickle cell disorder has played a crucial role in medicalizing race. Even though Middle Eastern, Indian, and Mediterranean people also carry the gene variant that is responsible for the disease, sickle cell is still discussed as if it only affects people of African descent. Sickling occurs in the bodies of people in malarial regions, specifically the tropics. Yet, its association with blackness has informed assumed linkages between “the sickle cell gene, the black body, and natural selection.”
More often than not, medicine as an institution has mapped ideas of racial difference on black bodies. Blackness does not only operate as a social construct but as a clinical concept. Its arbitrary nature is self-evident. From the one-drop rule to the use of blood group data to designate thirteen races, conceptions of racial identity are far from monolithic. The weaponization of blackness to concretize inequality dates back to the 18th and 19th centuries when white doctors employed medical knowledge of blackness as a “medically significant marker of difference” for plantation efficiency, colonial interests, and mastery of black bodies during slavery. The past is truly present: even today, false notions of biological difference between black and white people color the way medical students and residents assess and treat black patients’ pain.
To exist in a black body is to contend with the constant indignities of racism. The use of medicine to foreground notions of racial inequality tells the frightening story about how racism permeates almost every aspect of life. Its impact on healthcare outcomes for sickle cell patients should inspire honest and robust conversation about mitigating racial bias in practitioners and the institution of medicine at large.