Medical Racism: Alive and Well

By Courtney Carden, MBA, MSN, RN

“You don’t get sick until you go to the doctor.”

Growing up, I heard this phrase often from my elders. The fear of doctors came from many places. One, doctors were expensive; two, most of them did not seem to listen; and three, there were too many stories of bad medicine and Black people being used in experiments without their knowledge or consent. Most of us simply did not trust a doctor. Instead, we went to our neighbors for remedies that frightened parents would try before they got the doctor involved.

To break a fever, bathe a child in rubbing alcohol. Feed a cold, starve a fever. Try oatmeal baths for itching. Use dark liquor on a baby’s gums for teething. Never give a child who is vomiting dairy. An onion or a potato under the foot with a sock on can draw out illness. If all else fails, “go lay down and rest” worked more often than not — just add a little ginger ale, saltine crackers, the “Price is Right” on TV, and chicken noodle soup for lunch and dinner.

These old wives’ tales worked, even if they were simply anecdotal and ritual in nature, and for the most part are still followed today. I grew up knowing about these remedies, and I also remember hearing about horrible medical practices on Black people. Some I have learned were true, others were embellished, but all of it led to many people in the Black community not trusting the health care system, not wanting to take their kids to the doctor and not believing the government when it wants to get us on board with something we are adamantly against.

Horrifying History

In 1932, 399 men who were infected with syphilis were told they would be treated for what they termed “bad blood." However, the true experiment was to follow untreated syphilis to learn all the stages of the disease. The men thought they were being treated but were not. Even after penicillin became standard treatment for syphilis, these men were unknowingly denied treatment. They did not even know they had syphilis. They took the disease home to their wives, who then passed it on to their children. For 40 years, the famous Tuskegee Experiment ran. The health care professionals involved knew they were outside of the scope of “do no harm,” but continued anyway. It was not until Jean Heller of the Associated Press wrote about this unethical experiment that the study was halted.

Many people to this day believe the participants were purposefully injected with syphilis. While there is no evidence of that in the Tuskegee Experiment, there is evidence that the U.S. government knowingly gave people syphilis in Guatemala in the 1940s. Of more than 5,500 participants — Guatemalan prisoners, sex workers, soldiers, children, and psychiatric patients — about one-quarter were deliberately infected with syphilis, gonorrhea or chancroid. All of them were enrolled in the experiments without their consent, some as young as 10 years old.

Another egregious example is that of James Marion Sims, the “Father of Modern Gynecology,” who created techniques and tools still in use today. However, this well-respected man with statues in his image operated on enslaved Black women during the 1840s without anesthesia. The women were put through hours of procedures and surgery while awake. None of us today could imagine being operated on without the assistance of anesthesia and pain medicine. In addition to Black women, he also operated on Black children. Why didn’t he use anesthesia? Because he did not think Black people could feel pain. This notion that Blacks have a higher pain tolerance has been around since slavery and persists even today.

Still other studies perpetuated racial stereotypes and increased discrimination against Black people. Imagine your child being enrolled in a childcare program only for the National Institutes of Health to study them to see if they would become criminals. In Baltimore, 7,000 boys were tested to see if they had XYY syndrome and if that made them more aggressive and more likely to commit crimes later in life; their parents were told the tests were for anemia. Or imagine enrolling in an actual study on sickle-cell anemia in the 1970s and being told to simply not have kids if you were a carrier. Many African Americans —who subsequently faced discrimination due to the study — came to believe that the sickle-cell screening initiative was merely a disguised genocide attempt. Finally, imagine going to a doctor to deliver your baby after a rape, and they forcibly sterilize you without your consent, like Elaine Riddick, a victim of a government eugenics program keeping people deemed undesirable from having more children. Even as recently as last year, immigrant women held at a detention center in Georgia were sterilized without informed consent or their knowledge.

Powerful Stories

Stories like this plague the trust Black and minority communities have in medicine. In what has been termed “medical racism,” the government and medical community has a big dark secret — one passed in the stories told at beauty shops, churches, picnics and family dinners. In too many cases, instead of owning up to the wrongs, people in power bury the history, deny its impact or emphasize that the events happened in the past, denying the validity of the real and justified emotions and fears of people of color.

And many of us know or are the victims of acts of medical racism to this day. Black women are more likely to die in childbirth regardless of economic or educational background than any other group of women. At the end of 2020, a doctor who was infected with COVID died after begging her doctors to listen to her; they denied she was in pain, she was discharged and 12 hours later admitted to another hospital where she later died. The hospital’s excuse: “She was intimidating to the staff.”

When the COVID vaccine became a reality, many Black Americans balked at the idea of getting the vaccine. The mistrust is palpable. Very few Blacks signed up for the clinical trials, and many others are vocal on social media about not trusting this vaccine or many others. Among U.S. participants in the clinical trial for the Pfizer vaccine, 9.8% were Black (vs. 13% of the U.S. population), 13% were Hispanic (vs. 19% of the U.S. population), and 4.4% were Asian (vs. 5.9% of the U.S. population). In the Moderna vaccine trials, 9.7% were Black, 20% were Hispanic, and 4.7% were Asian.

To Black Americans, there is not enough evidence of the vaccine’s benefits. It feels rushed, and it reeks of the government experimenting on people of color. Is the vaccine safe? Can we put out a vaccine without enough data? Will this make things worse? Are the manufacturers confident the vaccine will create the herd immunity we need to return to normal? Then I started seeing the one thing that gave me the biggest pause. The push to get Black people to promote and care about this vaccine. Medical racism was finally being acknowledged, but only because they needed us to comply.

Justified Distrust

“They aren’t telling us the truth.” Black Americans are very much aware of the history of the government lying to people of color. Even as the government acknowledges medical racism, it seems disingenuous because they want Black people to get this shot, as if they are saying “We know we’ve messed up in the past, but trust us this time.”

Many of us are saying, “No, not this time.”

We acknowledge that a vaccine would be a great thing to help us to get back to normal; we acknowledge that this virus is not going away any time soon. But trust has to be earned. Black people are not monolithic; we do not group think. There are many who proudly jumped in line to take the vaccine. I personally know doctors, nurses, physician’s assistants and techs that have gotten the shot. Even my mom received her first dose. She asked me what I thought, and I told her I did not know. I do not know if this will give us the normalcy we want. She has a new grandbaby, and her fear is not getting to see him grow up. She said she was going to chance it for her family.

While she and my colleagues understand the concerns, they want their lives to go back to normal, so they took the chance. They have seen how this virus has devastated this world and want it to end. Many of them are people of color who know the same history and stories, but they choose to believe that this will be safe. And that is okay. For those of us taking a wait-and-see approach, there is justification in that as well. The healing will not come in one vaccine. It will take this country educating doctors, nurses and systems that medical racism is a real thing, and I am not sure that is a virus we can kill.