Testing HydroxyChloroquine on Black COVID-19 patients is more medical racism
These types of harms against Black people, globally, have been commonplace for decades.
by Ivory O.
My two younger sisters and I were on Facetime with our mother recently, discussing the current state of the world. My youngest sister was making fun of our mom for freaking about HydroxyChloroquine. Apparently, my mother had been distressed since the president announced that researchers are looking into using HydroChloroquine, famously known for its use as an anti-Malarial drug, as a cure for COVID-19.
My family and I are originally from Nigeria, and being a board certified Medical Laboratory Scientist, I am fully aware of HydroxyChloroquine and its use for malaria and other chronic diseases such as Lupus. I asked my mother to recall her experience taking the anti-Malarial drug and she launched into a passionate story about her and her siblings having different reactions to the drug, and how hers was one of the worst.
“The Devil’s drug,” she shouted, remembering how itchy she was and how much pain she felt all over her body as a little girl, requiring shots of Vitamin B12 and still feeling miserable. She shuddered and looked off into the distance. “Sometimes, I wondered if actually contracting Malaria would’ve been better.”
I am always interested in our family medical history and being a Medical Laboratory Scientist has given me grounds to ask more invasive questions. And luckily I had, because through these questions I realized the harm that HydroChloroquine, now being looked at in the global eye as a possible treatment for COVID-19, could pose to Black people all over the world.
Next, I asked my mother if she had ever been tested for Sickle Cell, and she was immediately offended. Growing up, Sickle Cell disease was seen as a death sentence in her community. Married couples were even encouraged to get genetic testing to see if the pair had a chance of passing the disease on to their children. She, very passionately, stated that she was told her blood type was B negative, so she couldn’t have Sickle Cell. When I informed her that the Sickle Cell trait isn’t correlated with our ABO Rh Blood Type, she was stunned. My younger sisters were, of course, quite confused at why our mother reacted this way at the mention of HydroxyChloroquine and Sickle Cell.
Sickle Cell is a genetic disease that affects the structure of Red Blood Cells, which ultimately affects how our Red Blood Cells deliver oxygen throughout the body. As a chronic disease, it affects people whose ancestry can be traced to areas where Malaria is a problem—like Sub-Saharan Africa, most noted for its Malaria epidemic.
The disease requires a person to be homozygous, meaning they carry two mutated alleles. This means that someone with only one mutated allele can be an unaware carrier. For a while, after the discovery for the Sickle Cell Trait (SCT), it was believed to be benign, having no major side effects. However, based on information learned within the last decade, that is no longer believed to be true. This is primarily because those with SCT can go into Sickle Cell crisis if they take HydroxyChloroquine.
HydroxyChloroquine, once absorbed, can cause the body to go into a hypoxic state in which the cells leak their contents, singling them out to be removed by the body from circulation. This helps treat Malaria because the parasite eggs are unable to survive in these conditions. In those with Sickle Cell, the harmful shape of their red blood cells can make it incredibly challenging for those parasite eggs to take hold; this is what led researchers to believe that Sickle Cell was an adaptation against Malaria. However, if a person with Sickle Cell contracts Malaria, due to the Sickle shape, their red blood cells are incredibly fragile and unable to tolerate the hypoxia, thus going to Sickle Cell crisis.
It is believed that there are 300 million people who have SCT—including 9% of African Americans in the United States—however, most are unaware. SCT is the reason why the NCAA now screens for Sickle Cell in their athletes. Those with SCT, when exposed to hypoxia, high altitude, dehydration and extensive exercise, can have organ damage due to the sickling of their red blood cells. This unfortunately, is why SCT continued to be a leading cause of sudden death in African American athletes and military trainees.
Since Sickle Cell occurs predominantly in those of African descent, there is still so much we don’t know about this disease and the people suffering from it have very little options for treatment. With an estimated 3 million African Americans with the mutation, only 16% of those of child-bearing age are aware that they are carriers of it.
If HydroxyChloroquine gets approved to be used against COVID-19, it will be harmful for millions of African Americans. However, these types of harms against Black people, globally, have been commonplace for decades.
There is a well documented history of Black people across the Diaspora being abused in the name of medical science and research. In America, laws and regulation surrounding consent for research and not causing harm to people enrolled in research studies wasn’t a topic for discussion until a newspaper outed the researchers involved in a study in the early 1970’s for abuse. In the Tuskegee Project—a study conducted in partnership with the United States Public Health Service from 1932 to 1972—Black men were unknowingly injected with Syphilis in order to determine the full progression of the disease, and continued to be injected long after there was a cure acknowledged in 1945.
It was only very recently that laws were put in place to prevent and agencies were created to report cases of harm or potential abuse like what happened at Tuskegee. As different medications start being pushed on us it is very important to remember that, both among medical practitioners and medical researchers, mistreatment of Black people had no set punishments until about 40 years ago.
The Tuskegee Project isn’t the only story of its kind and this is why I advocate for Black people in the hospital. By sharing what I know as a Black Medical Laboratory Scientist, I feel as though I’m helping by speaking truth into people’s fears when it comes to Healthcare and Research. Black people have been abused and the medical community has done very little to acknowledge history and Healthcare professionals often undermine and cast aside our fears. But Black people are valid in our fears, apprehensions and mistrust of the Healthcare system because, like most other things, it was a system that wasn’t built with the belief that Black People deserve care.
If HydroxyChloroquine is determined to be a viable treatment of COVID-19, a perfect response would be ER physicians being diligent with their Black patients, being aware of the clinical presentation of Sickle Cell crisis. Hospital Laboratories should ensure that their Hematology staff are aware of the possible increase of Sickle Cell Crisis and ensure staff are aware of its complete blood count (CBC) presentation, also ensuring enough bench staff able to perform Sickle Cell testing.
Since that is not our current reality, Black patients should clearly advocate that they would like these tests to be performed. Let Healthcare professionals know of your concerns of Sickle Cell, let them know if you have been taking HydroxyChloroquine. If any Healthcare professionals try to dismiss or belittle your concerns, ask them what prevents them from ordering these tests, ask them if they are denying care and if so you would like a different doctor or legal counsel.
I hope with this information, the people of my community will be better prepared to navigate these systems that were never made with Black lives in mind.
My name is Ivory O. I am a board certified Medical Laboratory Scientist here in the Midwest. I am a new mother and a curator of the online book club on IG called @BooksForAngst, we read self help books written by professionals in their field.