With the coronavirus Delta variant surging and many people citing the Tuskegee Syphilis Study to justify mistrust why they haven’t gotten a shot, the descendants of the men in that study gathered in Washington recently to deliver a message: Keep the Tuskegee name out of your mouths.
“Every time you turn around, there is a mention of the syphilis study,” said Carmen Head Thornton, whose grandfather, Freddie Lee Tyson, was one of more than 600 Black men told they had “bad blood” and recruited for the study that ran from 1932 to 1972. Hundreds of the men were denied treatment in order for researchers to understand the disease’s progression, and generations of Black people have grown up hearing references to that story.
“It hits different when it’s your family member, when it’s your grandpa that’s been impacted by this,” Thornton said. “And to hear that other people are not getting the vaccine because of what happened, we had to address them.”
A new documentary about Tuskegee, along with five related public service announcements airing across multiple platforms since late June, are part of the Ad Council’s sweeping “It’s Up to You” Covid-19 vaccine education initiative.
That effort is part of a wave of campaigns, from national to hyperlocal, leveraging Black gathering places, organizations and cultural touchstones to educate and urge Black people to get the shots. They acknowledge the justifiable history of distrust in the public health system, and try to answer it with myriad approaches.
A New Orleans vaccine rollout campaign used the feathered costumes, local characters, signature locales, and strutting dance moves of Mardi Gras to urge #SleevesUpNola in February.
At the request of the BLK dating app, the rapper Juvenile remixed his 1999 club anthem “Back that Azz Up,” to encourage vaccine holdouts: Girl, you looks good, won’t you “Vax that Thang Up.”
The Hustlers Guild nonprofit, which encourages Black students in science and tech, partnered with Alabama State University and other historically Black universities for “Hustler Talks Shoot Your Shot: Straight Facts about COVID-19 Vaccines” with actor Trevor Jackson of grown-ish in April.
And the Arkansas Department of Health recently used the big personality of the street hustler character – selling incense, oils, custom t-shirts, or catfish dinners out of the trunk – for a video urging people to get vaccinated.
“You have to understand, I’m a hustler,” says one Richard Johnson in the ad, which has been viewed more than 4 million times. “I’m a legit entrepreneur. I sell things. I come into contact with people all the time.” This is why he has to stay safe in them streets, he explains reasonably and why, as a businessman, you understand, he has no choice but to trust the COVID-19 vaccine.
The ad needs to speak to “the young urban Black male that embraces hip-hop culture and that entrepreneurialism,” said Myron Jackson, founder and CEO of The Design Group, the Little Rock marketing firm that produced the ad in partnership with the health department. Arkansas is among the states hardest hit by the Delta variant, and the unscripted ad is one of a series addressing different Black communities. It works because of the charisma of Johnson.
“Let’s not act like in the Black community we don’t have the DVD, CD, catfish dinner-selling personalities. They’re always trying to raise funds,” Jackson said.
While it can be tricky presenting these messages in mixed company, “At the end of the day, is it culturally authentic? You know you can identify with the character,” Jackson said. With so many Arkansans falling victim to COVID-19 after refusing to get vaccinated, “we have to be brave in terms of the messaging.”
While 70% of adults in the U.S. have gotten at least one dose, large pockets of the unvaccinated are scattered around the country. While most of those are white adults (57%), according to the Kaiser Family Foundation, “Black and Hispanic people remain less likely than their White counterparts to have received a vaccine, leaving them at increased risk, particularly as the variant spreads.”
The Tuskegee descendants came to Howard University last month for a screening and panel discussion of the documentary The Legacy: Tragedy to Triumph, and to share their concern about those seeking to exploit the nation’s history of medical racism to stoke mistrust in safe and effective vaccines during a pandemic that is twice as likely to kill Black people as their white counterparts.
“A lot of misinformation is out there that is causing people to think twice, or to hesitate” to take the COVID-19 vaccine, said Lillie Tyson Head, Thornton’s mother and president of the Voices For Our Fathers Legacy Foundation of Tuskegee descendants. “They think the men were injected with syphilis, and they were not.”
These men were not simply victims to be invoked as shorthand for why so many Black people are vaccine-hesitant, the descendants point out. “After the pandemic struck, there were so many references to the public health service study,” Head said. We want “to bring something good from something that was so tragic and shameful and not let that be the last word because those men have a legacy. They were loved and they loved other people.”
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In the past two weeks, U.S. Centers for Disease Control and Prevention data shows the number of Black Americans getting vaccinated has been rising.
Still, you have to stay in “that listening posture because of the survey data that tells us that three out of five Black Americans haven’t been vaccinated already, but it also tells us that we still have one out of five Black individuals in this country who are considering the vaccine,” Cameron Webb, an adviser on the White House COVID-19 Response Team, told the Howard audience during the The Legacy discussion.
Some people are complacent because they haven’t gotten COVID-19, and they think they never will, or they’ll be fine if they do, Webb said. Others lack confidence in the safety and efficacy of the vaccine, and may have internalized disinformation. Or they struggle with vaccine convenience – are the shots accessible, and administered without placing time or financial burdens for those who are ready.
In the spring, Webb came up with the White House’s “Shots at the Shop” initiative to enlist Black-owned barber and beauty shops to help get people vaccinated. The initiative, a partnership with the University of Maryland’s Center for Health Equity trains participants – more than 1,000 people have registered – and connects them with vaccine providers. The personal care product line SheaMoisture then gives $1,000 to shop owners who finish the Zoom training and host vaccination events.
The idea built on years of public health equity research and outreach using Black barbershops for efforts such as HIV/AIDS literacy and cancer screenings. After the pandemic began, some newly reopened shops became sites for mental health outreach, and began doing vaccine outreach after the vaccine rollouts in early 2021. Webb says they started wondering if they could take that idea national.
“Barbershops are the great equalizer,” he said. “Everybody who walks into the shop has a voice. It’s a place of natural information exchange. I think the model is such an appropriate one in Black communities for people to talk about issues where there’s some debate.”
Reed Tuckson, co-founder of the Black Coalition Against COVID-19, said that since the vaccine rollout they’ve been successful reaching older African Americans and those who just needed trustworthy information to convince them to get vaccinated through Zoom town hall meetings with Black organizations. They’ve hosted “Making it Plain,” (derived from the Black church exhortation) information sessions that are indexed on YouTube.
“Now, we’re in this stagnant period,” Tuckson said, where we have smart people “who are absolutely digging in their heels” about not taking the vaccine. He called it a frightening scenario with the Delta variant claiming younger victims than early COVID-19 strains. But “we come from a place of love and compassion as opposed to denigrating them, or trying to say these people are stupid or finger-pointing.”
He calls an upcoming Zoom town hall meeting with the NFL Alumni Health association “so important, obviously, because their work is focused on engaging optimal health for 18- to 38-year-olds and that’s the sweet spot for everybody now.”
It was Tuckson who kept hearing the syphilis study invoked as a reason not to get the vaccine and reached out to the Tuskegee descendants. He connected them with the Joy Collective creative agency, which produces the Ad Council’s COVID-19 outreach to the Black community.
“We have always been grounded in cultural insight and really connecting companies and brands to culture, specifically Black,” said Kelli Richardson Lawson, Joy Collective founder and CEO. The agency created a series of public service announcements that said, “Let’s get back to the things that we all miss,” Lawson said. “Let’s get back to church and let’s get back to girls’ trips instead of solo drinking wine every day.”
The study at Tuskegee “just kept coming up,” Lawson said, “so we thought we needed to tell the human stories of the fathers and brothers and husbands to inspire and encourage people in the Black community who haven’t been vaccinated to get informed about what the study was and what it wasn’t. To let them know all the safeguards that have been put in place prevent that kind of thing from happening again.”
At Howard, descendants and others talked about the urgency of having trusted messengers and credible information, especially in convincing young people to take the vaccine.
Melissa Clarke, an emergency medicine physician who works with hospital systems nationwide to improve population health outcomes, brought her 15-year-old niece, Alaina West, to hear the Tuskegee descendants.
Clarke is especially critical of those outside the Black community who use Tuskegee to advance an anti-vaccine agenda. “They know that basically dropping that misinformation is dropping it on fertile soil because the distrust is justifiable in our community. And so those memes about Tuskegee have been pumped in from the outside by people who do not mean us well,” she said. “And that’s the whole tragic irony of it. We’re listening to people who don’t mean us well.”
One of the issues “with young Black people especially, in this time of heightened consciousness, they’re coming into their understanding of the trauma that Black people have had, this is their way of saying, ‘This is my line in the sand. This is my autonomy. And no matter what you tell me about it, this is my way of retaining control in a society in which I don’t feel in control.’ And so I think the messages really have to be geared around, actually this is not the best place to draw the line in the sand, because it is killing the Black community and actually the way that you can exercise the most control is to make the decision to protect not just you, but your tribe, meaning your immediate family, the people you love the most, the people that you’re around the most,” Clarke said.
That’s part of the same message of the ad campaigns, the outreach to Black organizations, in barber and beauty shops and shared by Black influencers on social media. It is part of the message of the syphilis study descendants want to spread. Days after her father learned he was in the study, “I asked him how did he feel about it,” Head told the audience at Howard. “He was a man of faith and a man of wisdom and belief and he said, ‘I can’t do anything about what has happened to me and all of them, but it’s up to you all to make sure that nothing like this ever happens again.’ ”
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