When Dr. Thomas Beavers concluded Sunday service on March 15th, 2020, he never imagined that it would be the last time he’d see congregants fill the pews of the New Rising Star Church — affectionately known as “The Star” in the Eastlake community of Birmingham, Alabama — for at least a year. Since then, Beavers, who serves as pastor to approximately 3,800 members of the church, has held weekly services online.
At the beginning of the pandemic, Beavers says that many members of The Star had questions similar to those being asked elsewhere in the country — like whether Covid-19 is real, and why it meant suspending in-person worship. “When people started hearing of Covid-19, and how bad it was, there was a lot of disbelief,” Beavers tells Rolling Stone. “And then when people started seeing loved ones dying of Covid-19, the disbelief immediately turned to fear — of both the virus and the unknown. Then, we saw that not only did Black people get it, but when we got it, we were not doing as well as our Caucasian counterparts.”
Once the Covid-19 vaccine rollout began at the end of 2020, Beavers found himself addressing other areas of concern within his community. Sometimes it involved responding to questions on whether the vaccine was created to kill Black people — a myth Beavers dispelled “by letting people know that we don’t need a vaccine to kill Black people: Covid-19 is killing Black people.” Other times, people who wanted the vaccine came to him frustrated because after multiple attempts to get the shot, the vaccination sites in their area kept running out of doses.
But much of the media coverage on African Americans and the Covid vaccine so far has ignored situations like the one Beavers described — where Black individuals are actively seeking out the vaccine — opting instead to single out the entire demographic as being particularly vaccine hesitant. Typically, this assertion is explained with a quick reference to the U.S. Public Health Service (USPHS) Study of Untreated Syphilis in the Negro Male in Macon County, Alabama. Better known as the Tuskegee Syphilis Study — or simply “Tuskegee” — this research took place from 1932 to 1972 and involved the grossly unethical act of withholding treatment from approximately 600 African American male participants.
And while that may make for a tidy timeline of medical mistrust among Black Americans, it leaves out too much of the story. “The challenge I see with this narrative — and its continuation — is that it’s very myopic,” says Dr. Lisa Fitzpatrick, an infectious diseases physician and CDC-trained medical epidemiologist based in Washington, D.C. “It doesn’t talk about the breadth and depth of the issues facing people. It’s such an oversimplification.”
Reality is far more complex. It involves recognizing that Black Americans are not a homogenous population with a single, shared viewpoint; in which all members base their medical decisions in 2021 on a study that ended nearly half a century ago. It also requires understanding that medical mistrust — including vaccine hesitancy — is the result of ongoing, present-day health disparities, not exclusively historical medical mistreatment. While it can make sense to frame vaccine hesitancy as a threat to public health, positioning it as a problem specific to African Americans is not only inaccurate and unjust — it’s also harmful.
Vaccine hesitancy isn’t black and white
Though the current focus is largely on the failings of the Covid-19 vaccine rollout, when that becomes more streamlined, attention will increasingly shift to public trust. Wide-scale acceptance of the vaccines is necessary not just to save more individual lives in the short-term, but for us to reach herd immunity. And that’s where concern about vaccine hesitancy comes in: the idea that people who are unsure about the Covid-19 vaccine will ultimately be the ones who determine our fate.
Often, the rates of vaccine hesitancy referenced in this context come from a November 2020 Pew Research Center survey on confidence in the Covid-19 vaccine, in which approximately 42 percent of Black Americans said they would definitely or probably get a COVID-19 vaccine — compared to about 83 percent of English-speaking Asian Americans, 63 percent of Latinx Americans, and 61 percent of white adults.
Over the past few months, that figure has been used repeatedly to label African Americans as more vaccine hesitant than any other segment of the population, but the results of other surveys tell a different story. According to data from Civiqs released on February 23rd, 2021, white Republicans have the highest rates of vaccine hesitancy of any demographic group, with 56 percent indicating that they’re unsure or will not receive the vaccine, compared to 31 percent of Black Americans, 30 percent of Latinx Americans, and 7 percent of white Democrats, Axios reports.
Dr. Fitzpatrick, who is also the founder of Grapevine Health — which creates accessible, trustworthy health content for underserved and under-resourced communities — looks at these survey results in a different way. For example, data from the Kaiser Family Foundation released in December 2020 indicate that 15 percent of Black Americans reported that they would “definitely not” get the Covid-19 vaccine (which just happens to match the 15 percent of White Americans in this category, as well as the average across all demographics.) This leaves 85 percent of African Americans on what Fitzpatrick refers to as an “acceptance continuum” — which includes people who are questioning or seeking more information on the vaccine, as well as those actively looking to get vaccinated, and people who have already gotten the vaccine.
“So why aren’t we talking about that?,” she questions. “Because if we want to get under the pandemic, we shouldn’t keep emphasizing how many people won’t do it, when the vast majority of people want to take this vaccine — especially if we answer their questions.”
There are vaccine hesitant individuals in every demographic; it is not exclusively an African American issue. In some situations, Fitzpatrick says, when a survey’s findings indicate that Black individuals are “the most” vaccine hesitant, it’s only by a difference a few percentage points. “I think it provides a scapegoat,” Fitzpatrick says. “When we don’t get everybody vaccinated they’ll say, ‘well, they didn’t want it anyway.’ And I think that’s just not true.”
Differences in vaccine hesitancy among African Americans
Survey data aside, it’s important to remember that there is not a single, collective perspective or position of all Black individuals in the United States. “African Americans are not a monolith,” says Dr. Faith E. Fletcher, a bioethicist and assistant professor at the University of Alabama at Birmingham School of Public Health and a senior advisor to the Hastings Center. “We must avoid perpetuating single stories, dominant narratives, and critical misunderstandings about African American communities rooted in scientific racist ideologies, including those that characterize African American communities as vaccine hesitant, distrustful, and hard-to-reach.”
For example, Beavers says that he has seen generational differences in attitudes towards the Covid vaccine among African Americans. “What I’ve found is that sometimes people who are a little bit more seasoned — a little bit older — may trust the vaccine a little bit more, juxtaposed to my demographic, my age group,” the 38-year-old pastor explains. “That’s where a lot of the mistrust is.”
His observations echo the results of a February 2021 survey from the National Foundation for Infectious Diseases, which found that Black adults 60 years of age and older are more willing to be vaccinated against Covid-19: 68 percent plan to receive the vaccine, compared with 38 percent of Black adults between 18 and 44 years old.
According to Beavers, other sources of vaccine hesitancy among members of his community in Birmingham include skepticism over how multiple safe and effective vaccines were developed in such a short period of time, and the role that former president Donald Trump and his administration had in the process. Of course, these concerns aren’t limited to any particular demographic, and, given Trump’s mishandling of every aspect of the pandemic, absolutely make sense. (Fortunately, we do know that while the research did take place at unprecedented speed, no corners were cut in the Covid-19 vaccine trials, and the fact that the rollout didn’t begin before Election Day, per Trump’s fantasy timeline, is reassuring.)
As a pastor and trusted source of information, Beavers has had an inside look into the range of challenges his local community faces when it comes to the Covid-19 vaccine. And while many of the conversations center on effectively navigating healthcare as an African American in 2021, sometimes they involve addressing one particular question about the vaccine in relation to the past: “Is this the new version of Tuskegee?”
The U.S. Public Health Service Study of “Untreated Syphilis in the Negro Male” in Macon County, Alabama
Cynthia Wilson can trace her family’s Tuskegee roots as far back as 1840, seven years after the city was founded, and three years before it was incorporated; both her parents attended university there. Though Wilson, 69, only spent a couple years of her childhood in Tuskegee — she was raised farther north, in Jefferson County — she eventually moved back in 1987, spending more than 25 years at Tuskegee University, first as an archivist and then a public information resource specialist.
Part of Wilson’s work at the university involved setting the record straight about what really happened during the Syphilis Study, starting with the name of the study itself. “When people refer to it as the ‘Tuskegee Experiment,’ it makes my skin crawl,” she tells Rolling Stone. Because in reality, the men with syphilis were not provided with any medical intervention — and that was the point.
“In spite of the fact that the Public Health Service said that they were going to treat these men at some point, the protocol for the study was to watch the progression of the disease to autopsy — and you cannot do an autopsy unless somebody is dead,” Wilson explains. “So if you want to say that they were ‘experimenting’ with their lives — no, they weren’t. Because they weren’t trying anything to see if this worked better than that. They were basically seeing what happens with this disease — if you don’t treat it — [until] death.”
Although it has been nearly 50 years since the end of the syphilis study, Wilson says that evoking what happened in Tuskegee has become a way for African Americans to reference their collective history and experience with the medical establishment — even in situations that don’t precisely mirror the conditions of the research. “A lot of times, you don’t have a name to put on it,” she explains. “You know something didn’t go right, and in order to have some kind of label — some ability to speak to it — the syphilis study provides an example of how we are treated, more than the reality of what that mistreatment may have actually been.”
Of course, the mistreatment of African Americans at the hands of the medical establishment long predates the start of the study. This is something Dr. Vanessa Northington Gamble addressed in 1997 in her seminal article “Under the Shadow of Tuskegee: African Americans and Health Care.” Specifically, she explained why the widespread interpretation of the Syphilis Study as “the most important reason” for African Americans’ mistrust in medicine and public health overlooks broader historical and social contexts — including the countless medical injustices that took place prior to its start in 1932.
Gamble’s article sparked a wider discussion on the importance of looking beyond the syphilis study to better understand medical mistrust and health disparities affecting African Americans, and the impact they continue to have on public health. Unsurprisingly, most of these historical examples of medical mistreatment didn’t make it into textbooks; they didn’t fit into the standard narrative of American progress and triumphs in medicine.
They are, however, the basis of journalist and medical ethicist Harriet A. Washington’s 2007 book Medical Apartheid. In it, she chronicled the country’s long history of the exploitation and abuse of Black bodies in the name of medical progress — from experimentation done on non-consenting enslaved individuals, to the robbing of African Americans’ graves to obtain bodies for practicing autopsies, to using eugenics to justify a lower standard of healthcare for Black people and other forms of “scientific racism.” But as convenient as it would be to categorize these unethical practices and their effects as strictly problems of the past, that is far from accurate.
So much more than Tuskegee
There is no doubt that the syphilis study has been hugely influential in the United States — both in terms of the unquantifiable extent of its harms, as well as being the impetus for establishing our current guidelines for ethical research, including the protection of human subjects. But so much media focus on one of innumerable historical occurrences of the medical mistreatment and abuse of Black Americans ignores the countless health disparities resulting from systemic racism in today’s society.
For instance, when Fitzpatrick is out on the streets of D.C. answering questions about the Covid-19 vaccine from people of color, she estimates that only one in 10 people bring up Tuskegee. “I mean, it’s really obvious and it’s really egregious, and there are photos to back it up, but different forms of injustice are happening now,” she explains. “I think it’s shortsighted to say ‘Black people won’t get vaccinated because of Tuskegee.’ We have lots of other reasons.”
In fact, those looking for a more modern example of the harms of racist and unethical research practices need not look further than pulse oximeters — the small devices placed on the end of a fingertip to measure a person’s blood-oxygen saturation — which have become a medicine-cabinet staple during the pandemic. Given that the technology behind the device was developed using a group of mostly white participants, some pulse oximeters in use today have been found to produce inaccurate readings when used on African Americans or other people of color. The Food and Drug Administration issued a statement on the limitations and risk of inaccuracies related to the device on February 19, 2021.
Framing African American hesitancy in 2021 as being solely (or at least mostly) the result of a study that ended in 1972 (albeit one that lasted 40 years) makes it sound like the only thing getting in the way of eventual herd immunity in the U.S. is Black individuals moving past this single incident. “In relation to medical mistrust, this reminds me of the sentiment many have when discussing the impact of the Atlantic slave trade on contemporary African American communities: many folks believe we should be ‘over it,’” says Dr. Alicia L. Best, a socio-behavioral researcher and assistant professor of public health at the University of South Florida.
But when considering both U.S. chattel slavery and the Syphilis Study, Best stresses the importance of keeping two things in mind: their length of time, and the accumulation of injustice. “We are talking about extensive episodes in history and not single events in time,” she tells Rolling Stone. “Secondly, these episodes are situated in the context of ongoing, intersecting, and unreconciled injustices which accumulate and continue to reinforce mistrust.”
In fact, Fitzpatrick says that there are plenty of present-day manifestations of these accumulated injustices without having to rely on historical explanations of Covid-19 vaccine hesitancy among African Americans. “Even before the pandemic, Black people were dying and had disproportionately high rates of chronic diseases and health conditions like cancer, diabetes, stroke, heart disease — you name it,” she explains. “And it’s because of all the social issues and the stress associated with being Black in the United States.”
As long as people are talking about medical mistrust among African Americans, Fitzpatrick sees it as a chance to address issues that extend far beyond vaccine hesitancy. “We have an opportunity before us — and I don’t want to miss it,” she says. “We have to put the elephant on the table, and talk about this distrust holistically, and really acknowledge and accept people’s experiences, and figure out how to address them.” Here are some strategies, courtesy of Beavers, Best, Fitpatrick, Fletcher, and Wilson.
Address institutional mistrust
In order to stop the ongoing generational accumulation of medical mistrust, Best and Fletcher say that healthcare, research, and public health institutions must start by admitting their untrustworthy actions and acknowledging that African Americans’ mistrust is justifiable. And this is only the start of a process toward reconciliation, they write in an article published online in November 2020 in the Journal of Health Care for the Poor and Underserved.
According to Fitzpatrick, this process has to begin with a broad acknowledgement from the U.S. government for not only past injustices, but also for “what’s happening with Brown and Black people in our country today.” And, she says, it needs to be sincere and come from someone other than Vice President Kamala Harris. “It’s fortuitous that she’s become the vice president, but I don’t want someone like her to become responsible for apologizing for what’s happened to Black people over the last 400 years,” Fitzpatrick explains. “It’s the optics of it.”
Along the same lines, institutional mistrust should be approached in the same way as trust in general — something that can be gained, and, once lost, must be restored through trustworthy actions, Best explains. “We must stop framing mistrust as a shortcoming or willful ignorance among African American populations, but rather a coping strategy in a society that has not always displayed trustworthiness,” she says. “The benefit of this approach is that it shifts public health priorities toward strategies that address faulty systems, rather than what may be perceived as faulty individuals.”
Taking this approach in 2021, Fitzpatrick says, requires listening to people’s concerns and talking about bigger issues. “Vaccine hesitancy — it’s a flash in the pan, because we’re not going to be in the pandemic forever,” she notes. “But these issues will still be there. They’ve always been there.”
Change the narrative
One way to shift focus away from the perceived vaccine hesitancy among Black Americans is to elevate success stories instead. “We are witnessing laudable community-focused vaccination strategies across the country, including from groups like the Black Doctors COVID-19 Consortium in Philadelphia, which implemented a 24-hour, walk-up vaccination site,” Fletcher says, noting that in a single weekend more than 4,000 people were vaccinated, according to reports. “This is an example of an innovative approach that meets communities where they are and facilitates vaccine acceptance.”
Not only does this highlight present-day solutions instead of continuing to characterize an entire population as basing most of their medical decisions in 2021 on an event from the past, it also provides a concrete example of healthcare providers working to build trust and trustworthiness within communities of color. “To advance health equity,” Fletcher explains, “we must actively resist and challenge existing narratives that portray communities of color as risky, irresponsible, and incapable of behavior change, and shift the responsibility to structures that disadvantage some members of society.”
Focus on access
It’s not enough simply to move the conversation away from vaccine hesitancy among Black Americans, Fitzpatrick says — it must now center on improving access to the vaccine and finding ways to deploy it into communities. “This, to me, is going to be the biggest problem we have,” she adds.
Ultimately, the extensive coverage of vaccine hesitancy may have exacerbated the challenges related to accessibility, making real issues easier to ignore. “We don’t even have enough vaccines to vaccinate the Black people who do trust the vaccine,” Beavers says. “We’re really between a rock and a hard place right now.”
Similarly, Beavers has observed that the limited accessibility of the vaccine to African Americans adds another layer of mistrust. “There’s a lack of vaccination sites in the Black community in Birmingham, Alabama,” he explains. “And so, then you have the question: ‘Why?’ You know, ‘Why? Why are we always the ones to be in a disparity when it comes to healthcare? Why are we always the first to die, and the last people to get the vaccine?’”