We Learned the Wrong Lessons from the Tuskegee ‘Experiment’

Rarely a day goes by without national news stories about vaccine hesitancy: How many people say they definitely will or won’t get a shot and how many are in the ‘maybe’ box. No account is complete without a particular focus on Black Americans who–despite contracting, being made severely ill and dying from coronavirus at higher rates than other racial and ethnic groups– express the most reluctance to being injected with something developed to save their lives.

When asked to explain why so many Black people simply don’t trust the Federal government with their health, the most common answer is “because of what happened at Tuskegee.” Reference to that seminal event has become shorthand for past medical betrayal, abuse and exploitation at the highest levels. 

In 1932, the U.S. Public Health Service dangled the promise of free medical care to recruit poor Black men in Macon County, Alabama to participate in the “Tuskegee Study of Untreated Syphilis in the Negro Male.” Even after penicillin emerged as an effective treatment 15 years later, the researchers withheld the drug and watched as the men died or were ravaged by the effects of untreated syphilis.

Based on my reporting and personal conversations with friends and family, it’s clear many people don’t know what happened at Tuskegee. They mistakenly believe the 600 Black men were injected with something bad (syphilis) that made them sick when, in reality, the 399 men who had the disease were denied something good (a dose of penicillin) that would have healed them.

But even many who have the details right learned the wrong lesson from that shameful episode in American medical history. Instead of rejecting vaccines and new therapeutics that are routinely used to successfully treat and cure the majority population, Tuskegee should have taught Black people to make a simple demand: Give me whatever you’re giving the white folk.

If that had happened 70 years ago, Tuskegee, Alabama might be better known for the HBCU that bears its name than for a government injustice chronicled in books, movies, plays and Congressional hearings.

My home state of North Carolina was one of the first to release coronavirus data by race. The numbers from Charlotte and Mecklenburg County showed the virus’ disparate impact on people of color and were soon confirmed by the skyrocketing COVID-19 rates in other cities with high Black populations.

I saw early on how our well-justified mistrust of public health initiatives, a penchant for baseless conspiracy theories and a misreading of medical history would allow the crisis to take an outsize toll on the Black community.

That’s why months later, I decided to participate in the vaccine trials. I wanted to ensure that Blacks were adequately represented in the research and to show that the vaccine should be embraced, not shunned. My motives weren’t completely altruistic, however. Clinical trial volunteers were supposed to be at or near the front of the line when a vaccine became available. That couldn’t happen soon enough for me.

While some people thanked me for doing my part for medical science, others were perplexed and even angry that I would become a human guinea pig to the very medical establishment that has used our bodies for experimentation without care or consent.

The data and recent studies show that, rather than being recruited as lab rats, People of Color are too often cut out of cutting edge research. Blacks make up about 13 percent of the U.S. population but, on average, 5 percent of clinical trial participants for disease treatment.

It’s almost taken as a given that our distrust is responsible for the low participation rates. But a study published in the American Cancer Society Journals found that some study recruiters viewed racial and ethnic minorities as less promising participants and others reported withholding trial opportunities from them based on these perceptions.

That seemed to play out in the first Phase 1 Moderna trial of 45 people; 40 were white and two were black. Pfizer and Moderna said diversity was a priority for their phase 3 vaccine trials but cited the difficulty in recruiting Black trial participants. That wasn’t my experience.

Last summer, I applied for the Pfizer and Moderna trials but I wasn’t even screened while two of my white friends were recruited right away. I submitted another application–highlighting my ethnicity this time–after Moderna announced that it slowed enrollment to increase participation among minority volunteers. Still nothing. In mid-November, I was finally recruited for the Johnson & Johnson vaccine trial.

Racism and discrimination in the healthcare system show up in the form of neglect, indifference and dismissal. The COVID death toll was higher among Black and brown people because too many had their symptoms dismissed, were turned away from hospitals rather than admitted or were forced to work in dangerous conditions because they were deemed essential.

Much of the fear of the vaccine is prefaced on the assumption that Black people would be expected to go first to make sure it was safe for everybody else. The low numbers of people being vaccinated in the communities hardest hit by COVID-19 show just the opposite has happened.

These present day examples show that, like Tuskegee, we are at much greater risk of being denied care than of receiving harmful or malicious care. That’s what we should really fear. Demanding and receiving whatever white people are getting sounds simplistic but it is by far the shortest and simplest route to ending the pervasive health disparities of this pandemic.

This is an opinion and analysis article.

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