Not all Americans are enthusiastic about the arrival of the vaccine for the novel coronavirus. A study released in December from the Kaiser Family Foundation found that more than one-third of Black adults surveyed said they would “probably or definitely not” get a Covid vaccine, even if it was free and vetted by scientists.
How does the history of medical racism influence distrust of the vaccine? It’s complicated – and the solutions are even more complex.
WHY IS THERE DISTRUST AMONG SOME BLACK PATIENTS?
The infamous U.S. Public Health Service Syphilis Study at Tuskegee is often cited as a key reason that Black patients may be wary of the Covid vaccine. In the 1930’s, the United States government recruited 600 Black men to study the lifetime effects of syphilis on the body. The men – around 400 of whom were not infected, and around 200 who were infected – were primarily poor Black sharecroppers. The men were promised free healthcare, but were not told that they would not be treated for their disease throughout the course of the experiment, even though a cure for syphilis was soon discovered in the mid-1940s. The study continued for decades as many of the men experienced serious health problems, spread the disease to their families, and died, and was stopped only after The Associated Press published an expose in 1972 – nearly 40 years after the study began.
The Tuskegee study is just the tip of the iceberg, says Dr. Brittani James, a Black doctor in Chicago and assistant professor of medicine at the University of Chicago who runs The Institute for Antiracism in Medicine.
“The reality is, we have centuries of abuses,” James said in a video interview. “You cannot isolate a Black person’s hesitance to take the Covid vaccine and the mistrust of that from their mistrust of medicine and the health care system. Mainstream scientists and medical professionals were crucial to research like Tuskegee, and have continued their philosophies of biological black inferiority, to this day.” (Read our full interview with James here.)
Black patients have seen the impacts of medical racism throughout a pandemic that has disproportionately affected them. In our interviews with Black Covid long-haulers, they have described consistent mistreatment at the hands of practitioners, saying medical providers have often refused to listen or believe their symptoms. In late December, Susan Moore, a physician in Indianapolis, died of Covid-19 – just weeks after livestreaming her description of her mistreatment at the hands of white doctors during her stay at the hospital.
“I put forward and I maintain if I was white, I wouldn’t have to go through that,” Moore said in the livestream of her experiences.
This mistrust of the medical establishment has shaped various steps in vaccine development. While Black people comprise 13.5 percent of the US population, their numbers have been underrepresented in major vaccine trials, leading to some reticence from community leaders to participate in vaccination efforts. Leaders of two historically Black colleges and universities, or H.B.C.U.’s, got pushback on social media in the fall when they encouraged Black communities to participate in vaccine trials.
Yes. Black people should submit to vaccine trials like they have no experience with being used for medical fodder. 🙄🙄*cough cough* Tuskegee experiment, the entire field of gynecology in the US.
— Nkonye (@NdiNaija) September 7, 2020
“Racism is baked into the system of medicine, the institution, the way we deliver care,” James said. “The way that we teach our trainees, and even the way that we conduct our biomedical research….it’s infused, you can’t separate them.”
WHAT IS BEING DONE?
In October, the Centers for Disease Control required all states to submit initial vaccine rollout plans to the agency, which included a requirement to provide communications plans on “building vaccine confidence broadly” and “dispelling vaccine misinformation.” The C.D.C. also recommended that states incorporate leaders from organizations serving racial and ethnic minority groups into any vaccine implementation committees.
According to the Kaiser Family Foundation, “about half (23 of 47, or 49%) of plans specifically mention racial/ethnic minorities or vulnerable populations when discussing COVID-19 vaccine communication,” while “just over a third (18 of 47, or 38%) of state plans include at least a mention of addressing vaccine misinformation but most of these states do not provide specific strategies for countering misinformation.”
So the states are actually in charge, with some more organized and motivated than others, and some more buffeted by political winds.
Some states that were hit particularly hard are starting to think about how to counter the distrust of the vaccine among minority groups.
“There is a clear sensitivity” among the leadership of New York and New Jersey to how to address medical racism in distributing the vaccine, Michael Gusmano, the director of the health systems and policy concentration at Rutgers University, said in an interview. (The New Jersey plan submitted to the C.D.C. in October includes an extensive list of people appointed to the Governor’s Restart and Recovery Commission, which shows several leaders from Black-led business, faith and social justice organizations.)
“When you listen to the governor of either state, when you listen to the people at the Departments of Health, they’re looking at the numbers, they understand them, they make a point of bringing [mistrust of the vaccine] up,” he said. “And so it is clearly, from a policy agenda setting point of view, a priority issue.”
City and state leaders are also initiating action at the local level. In Chicago, Black elected officials from the West Side spoke publicly in late December to throw their support into the vaccine and allay fears.
The first person to be vaccinated in the United States was Sandra Lindsay, a Black nurse in New York City, whose livestreamed vaccination could, Dr. Anthony Fauci said, serve as “a sign of hope for Black Americans who are hesitant to trust the vaccine.” After Lindsay’s vaccination, some Black doctors have taken the cue to throw public support and transparency behind their own vaccinations. A Black doctor in Miami put his vaccination on Facebook Live, while on Twitter, the hashtag #BlackDocs4COVIDVax showcases some Black healthcare providers receiving their vaccinations.
WILL IT WORK?
An investigation from ProPublica found that of the nine states with the highest Black populations, “many have barely invested in overcoming historic mistrust of the medical establishment and high levels of vaccine hesitancy in the Black community,” according to their plans submitted to the C.D.C.
“Spokespeople for the vaccination need to be a diverse group,” Dr. Mark Kittleson, chair of the Department of Public Health at New York Medical College, told ProPublica. “Dr. Tony Fauci is fantastic, but every state needs to find the leading health care experts that represent the diversity in their own state, whether it’s Native American, African American or Latino.”
Kittleson and other experts have suggested recruiting faith leaders to set an example. But Reuters reported in December that Black pastors and faith leaders, who are being called to take the vaccine to set examples for their congregations, are hesitant to show public support for the vaccine.
“As a pastor and as a healthcare worker, I can see why people should take it, because of the devastation that I’ve seen. But I also understand why the African American community does not trust it because of how we’ve been treated in the past,” Reginald Belton of First Baptist Church of Brownsville in Brooklyn told Reuters.
A descendant of one of the Tuskegee participants told ABC in December that she would take the vaccine – but that she understands the skepticism from others.
“I am committed to spending my life in public health and in working in the way that I do because we need that representation,” Carmen Head Thornton, whose grandfather was involved in the study, told ABC . “That’s the reason why the syphilis study happened to begin with because there wasn’t that representation. There wasn’t those voices around the table. And so, we really do need to have that representation engaged in science, engaged in research and engaged in respectful health care.”
“We can’t fix things before naming them,” she said. “This is another problem with doctors. We like to think we’re saviors. Just because we have good intentions, we’re still enacting violence toward black people. Even though we’re in a system that’s supposed to heal people, we have been very complicit and active in the oppression and destruction of Black and brown bodies. And we have to reckon with that.”