Lies. Year after year, researchers told lies to hundreds of Black men bamboozled into participating in one of this nation’s most torturous studies. “Special” treatment just for them included painful spinal taps. They didn’t really have “bad blood,” just syphilis — which could have been treated by penicillin, a readily available medicine achingly kept out of reach.
Black Lives didn’t matter. But Black deaths carried a premium, so their plan was to track study participants till autopsy.
When health authorities ignored a young Public Health Service worker’s concerns and doubled down on the “Tuskegee Study of Untreated Syphilis in the Negro Male,” he alerted the media. Scathing news coverage triggered the formation of an outside advisory panel whose findings shut down one of the nation’s most shameful episodes.
Understandably, mistrust of medical professionals continues to burn deeply.
Yet, here I am.
I climbed a couple of flights up to a non-descript clinical room adorned with aging travel posters of beaches now off-limits, waters dotted with cruise ships no longer safe to board.
Pinching with two fingers, one of the study staff has primed a hunk of my upper left arm for a jab of one of the experimental COVID-19 vaccines the world has pinned its hopes on. Already, I’ve been weighed, my blood pressure checked, my internal organs assessed, an astonishing amount of my blood liberated and sloshing in a handful of test tubes, my nasal cavity conquered by swab. It’s like getting water up your nose while swimming, they say. True enough. And equally unpleasant.
These are among the unpleasantries that we volunteers undergo for federal regulators to gauge whether this and other potential COVID-19 remedies are safe and effective enough for millions around the globe to take. A vanishingly small number of clinical trial volunteers are Black, like me. We account for 21% of COVID-19 deaths, 13% of the U.S. population and a mere 3% of vaccine clinical trial volunteers.
The troubling shadow of Tuskegee is one explanation why.
Myriad polls have taken the pulse of the jittery U.S. citizenry, gauging our willingness to roll up a sleeve for a shot of COVID-19 vaccine. One of the largest polls finds that Black Americans completely buy into vaccination as a way to create a firebreak to slow SARS-CoV-2’s wildfire spread. But only 14% to 18% of Black Americans “mostly or completely” trust that a COVID-19 vaccine will be safe or effective. The same poll finds that knowing about the Tuskegee Syphilis study sends the likelihood of the Black people getting a COVID-19 vaccine plummeting.
Unlike Tuskegee, the world is watching in real-time.
I leave the clinic toting a bright red bag with study materials, a digital thermometer, a notebook and a cell phone loaded with an app that I’ll use to report side effects. A study recently published by the New England Journal of Medicine about this novel vaccine candidate indicated its woes could include pain, swelling, flu-like symptoms, fever.
The next day, I report tenderness in my upper arm near where I got the shot. If I were aboard a plane trying to empty the overhead bin, my left arm wouldn’t be up to the task. Fortunately, the pain subsided by the next day.
Like the study staff, I am blinded so I don’t know if I got the real deal or a dummy shot. And they’ve asked me not to get an antibody test. I don’t react to the seasonal flu vaccine, so feeling like someone punched me in the deltoid was kinda good news. Maybe I got the actual vaccine.
For seven days, I balance a thermometer under my tongue for a few seconds, tapping answers and my temperature into the app and pressing submit. I get a follow-up call asking similar questions about symptoms and inquiring whether I’ve taken any medicine.
As a reporter when Colorado was the epicenter for West Nile Virus infections, I remember someone broke into a pharmacy to steal medicines that were in short supply. Also during my reporting days, I appeared on C-SPAN to talk about a shortage of the annual flu vaccine. Anxious Americans, especially people made vulnerable by chronic health conditions, wanted the shot, including a panicked woman whose anxiety I tried to allay.
There won’t be sufficient COVID-19 vaccine in the early months, so states are working on detailed distribution plans. But no one’s busting down pharmacy doors this time. A sizable chunk of the U.S. is leery about the COVID-19 vaccine, fearing research teams cut corners to deliver outgoing President Trump a campaign talking point. Even doctors and nurses are among those warily watching from the sidelines.
I keep an eagle eye on Eric Topol’s Twitter feed.
He’s applauded the sprint from SARS-CoV-2 sequencing to reports this month of impressive vaccine efficacy as “one of science and medical research’s greatest achievements.” He’s also on the prowl for missteps. Topol illustrates posts to his 351,000 Twitter followers with journal articles marked up with yellow highlighter. He’s taken the Trump administration to task for lacking a national pandemic plan and for letting “politics prevail.” He’s chided AstraZeneca and the University of Oxford for “bad lack of transparency” and lauded the World Health Organization for making “the right call” after reviewing all remdesivir data.
Unlike Tuskegee, results from this trial may help others.
I volunteered to test one of the messenger RNA vaccines in development, because it isn’t powered by weakened virus. I didn’t want to shed virus at a time when it’s unclear how much viral shedding is infectious. Instead, this mRNA vaccine delivers marching orders to my muscle cells to produce the virus’ spike protein that it will display on its surface. If my immune system is astute, it will recognize the spike protein and rally an immune response. I envision a mini red flag waved at a charging baby bull and hope I’ve already begun to build antibodies from the first injection.
Around the nation, some 30,000 of us have participated in Moderna’s clinical trial, and the company announced Nov. 30 that its experimental therapy was 94% effective at preventing COVID-19 and 100% effective at preventing severe disease.
A month later, I’m back for a second dose, the money shot. Already, I know that more side effects are associated with this second shot. Unexpected things can happen, like young healthy volunteers who ended up hospitalized while testing a novel monoclonal antibody. Even this mRNA vaccine left one volunteer shaking with fever and racked with pain.
I felt discomfort in my left (non-dominant) arm quicker with the second shot, occurring the same afternoon as the shot. The tenderness was episodic. I could type just fine, elbows at 90 degrees. But yikes, when I reached on top of the fridge for a paper towel, I was quick to switch to my right arm to dodge the pain. Tapping at the app, I noticed potential side effects had grown to a laundry list, now including headache, fatigue, muscle aches, aches in several joints, nausea/vomiting, chills. Fortunately, the pain wasn’t enough to require a painkiller.
I’ll return to clinic three more times for additional bloodlettings, will send updates via app monthly, and cap it off with a final clinic visit about two years from now.
Weeks ago, during my first visit to clinic, we reviewed the informed consent. Because I already read it, I only had a couple of questions. But other study participants wanted to know what would happen if the FDA rules on the therapy while the study is underway. As one would expect, the volunteers in the placebo arm would get the vaccine.
Unlike Tuskegee, I will receive medicine.
Diedtra Henderson is a freelance science writer and former print news reporter with more than 20 years of experience working as a staff writer for the Miami Herald, Seattle Times, Denver Post, Associated Press, and Boston Globe.