The Washington PostDemocracy Dies in Darkness

Anti-vaccination leaders fuel black mistrust of medical establishment as covid-19 kills people of color

The memory of the horrific Tuskegee syphilis study makes some African Americans suspicious of a coronavirus vaccine

Erik Underwood, center, with anti-vaccination activists — including, from center right, Robert F. Kennedy Jr., Kevin Jenkins and Joyce Brooks, a leader with the Colorado NAACP — at a June rally in Denver. (Children's Health Defense)

The message came to Erik Underwood early this summer: Robert F. Kennedy Jr. wanted him to stand by his side at a rally on the steps of the Colorado Capitol in Denver.

Underwood, an African American entrepreneur coming off a failed U.S. Senate bid in Colorado’s Democratic primary, had long revered the Kennedy family for its legacy of civil rights activism. But until recently he would not have guessed the cause that would bring him together with a member of that dynasty on a Sunday in June.

Kennedy, one of the nation’s leading anti-vaccination activists, was in Denver to oppose a bill tightening the state’s exemptions from immunizations for schoolchildren. After months of discussion with vaccine skeptics, Underwood had adopted Kennedy’s cause as his own. Despite the overwhelming consensus of doctors and scientists who say vaccines are safe for most people of every race, Underwood now believed that the drugs not only were dangerous but also posed a special threat to black children.

“I see this as an injustice for everybody,” he said, “especially for the black community.”

The bill ultimately passed, but not before debate over it showcased a remarkable new alliance between the anti-vaccine movement and black leaders in Colorado. Among those who testified against the bill, alongside Kennedy and white parents, were a local NAACP leader and a prominent Black Lives Matter activist.

The dynamics on display in Denver have nationwide implications as scientists race to create a vaccine for the deadly coronavirus, which has taken a disproportionately steep toll on people of color. Although African Americans stand to benefit enormously from a vaccine, they remain distrustful of a medical establishment with a history that includes the Tuskegee syphilis study and surgical experiments on enslaved people — not to mention the ongoing disparities they confront in the U.S. health-care system.

A recent Washington Post-ABC News poll found that 63 percent of black adults said they were likely to get a coronavirus vaccine, compared with 70 percent of whites and 78 percent of Hispanics. Only 32 percent of black adults said they would definitely get a vaccine, compared with 45 percent of whites and Hispanics.

Anti-vaccination leaders seize on coronavirus to push resistance to inoculation

The possibility that anti-vaccination leaders — who have already made common cause with those dismissing the risks of the pandemic and protesting state safety restrictions — could further undermine faith in a vaccine among people of color is profoundly worrisome for public health officials.

“It is of great concern to me,” said Anthony S. Fauci, the federal government’s top infectious-disease expert. “If there’s anyone you want to get vaccinated, and anyone for whom vaccination would be most beneficial, it would be for the people [anti-vaccination activists] are trying to influence not to get vaccinated.”

He said it was vital not only to build African Americans’ trust in the vaccine that is ultimately developed but also to persuade them to participate in clinical trials, ensuring that the medicines are safe and effective for all racial and ethnic groups. Efforts to enroll more people of color in clinical trials for other drugs have been underway for years, with mixed results.

Anthony S. Fauci said he was "cautiously quite optimistic" about trials for covid-19 vaccines during a July 14 Georgetown University event. (Video: Georgetown Institute of Politics and Public Service)

Repeated studies have demonstrated the safety of vaccines for the vast majority of those who receive them. Many count immunizations — which have all but eliminated diseases that once sickened, crippled or killed millions of people every year — as among the greatest advances in the history of medicine. The 1998 study by Andrew Wakefield that purported to show a link between a common vaccine and autism, launching the modern anti-vaccination movement, was exposed as fraudulent and retracted.

Anti-vaccination activists’ interest in minority communities is not new. Kennedy has repeatedly sought allies among African American leaders. Several years ago, Wakefield, the disgraced British ex-physician who was also behind the 2016 film “Vaxxed: From Cover-up to Catastrophe,” helped persuade many Somali immigrants in Minneapolis to avoid the vaccine for measles, mumps and rubella. The Somali community was later hit by the state’s largest measles outbreak in nearly three decades.

But amid the social fracturing surrounding covid-19 and the ferment over racial injustice that has swept the United States following the killing of George Floyd in police custody, there are signs that the anti-vaccine movement’s message is gaining new traction.

‘Visions of Tuskegee’

It was last year, after she and other activists had toiled to block an earlier school immunization bill, that Denver chiropractor Julie Bogdan said she realized something was amiss in their movement.

“It was apparent to me that it looked very — it looked very white, to be honest with you,” Bogdan recalled.

She decided to send out feelers among leaders in Denver’s black community. Her goal, she said, was simply to ensure that people of color were adequately educated about the alleged risks of inoculation.

“The intention was just to allow their community to have information and to decide on their own behalf whether or not it was a movement they wanted to participate in,” Bogdan said.

Through an African American friend, Bogdan convened a summit of sorts at a Chipotle restaurant with Theo Wilson, a Black Lives Matter activist in Denver. Wilson said he had questioned the safety of vaccines but had not been involved in activism on the subject. He said the movement’s themes — a predatory pharmaceutical industry profiting from the ignorance of vulnerable people — resonated with him.

“Visions of Tuskegee still dance in our heads, man,” Wilson said in an interview. “There is, in the black community, common cause — much larger than people would think — because of our history in the medical community.”

Bogdan also broached the subject with one of her patients, Joyce Brooks, a black woman who heads the education committee of the Colorado NAACP. Brooks helped arrange a presentation for the Denver chapter’s leadership by Colorado anti-vaccination activist Phil Silberman and Toby Rogers, an economist who frequently attacks the safety of vaccines on social media and has done work in the past for Kennedy’s Children’s Health Defense nonprofit group.

At that meeting, the pair ran through data they claimed showed that black children were more prone than white children to suffering vaccine injuries. Brooks said her NAACP colleagues were impressed by the information and taken aback that Democratic legislators pushing to narrow vaccine exemptions had not consulted with them.

“People really felt informed,” Brooks said, “and rather angry that they hadn’t heard about this.”

Silberman and Rogers also met earlier this year with a group that included African American pastors and other community leaders at a Denver steakhouse. Underwood, who attended, said their message was well received. “Let me tell you this: The black community gets it,” Underwood said. “The black pastors got it. I got it, certainly.”

At least four black leaders — including Underwood, Wilson and Brooks — spoke against the state legislation strengthening vaccination requirements when it came up for a vote last month, according to the Mountain West News Bureau, which reported extensively on the debate over the legislation.

Assertions of disproportionate harm to African Americans from inoculation are often based on a 2004 Centers for Disease Control and Prevention study that set off one of the more bizarre episodes in vaccine science history. That study, conducted in Georgia, observed slightly higher rates of autism among children who had received immunizations than among those who had not. The authors said this was probably because autistic children were required to be vaccinated to participate in preschool special-education programs.

Their findings were called into question when one of the authors, William Thompson, later claimed the CDC had suppressed data showing a stronger link between vaccines and autism in black children than in white children. Thompson’s allegations, made during secretly recorded telephone conversations with anti-vaccine activist Brian Hooker, were never substantiated. A 2014 paper Hooker published on the subject was retracted.

“Immunizations are so important. I cannot think of any other medical intervention that’s more important,” said David Satcher, a black physician who served as U.S. surgeon general from 1998 to 2002 and who before that was director of the CDC. “I would be very suspicious of someone who tried to talk me out of immunizing my children.”

Satcher acknowledged that public health officials face special barriers among African Americans but said it is vital that they continue advocating the benefits of vaccines that have been proved safe and effective.

On Thursday, the president of the American Board of Internal Medicine and others urged the federal government to enlist doctors and scientists of color to build confidence in a coronavirus vaccine in minority communities. In a letter to Moncef Slaoui, who is heading up the Trump administration’s coronavirus vaccine development program, they said health officials should “take the trust gap seriously as a problem to be addressed, every bit as substantive as having enough syringes and needles with which to deliver a vaccine.”

‘Not going to be guinea pigs’

The extent of that trust gap has already become evident during the coronavirus pandemic.

In Hobson City, Ala., a predominantly black town of 800 people, Mayor Alberta Cooley McCrory said residents have largely avoided free coronavirus tests that she arranged with help from a local hospital and county health officials. Their fear, she said, is that the tests are part of a secret experiment to infect them with the virus.

“They’re not going to be guinea pigs,” McCrory said, summarizing the concerns of town residents. “They don’t want to end up like the people did in Tuskegee.”

‘You’ve got bad blood’: The horror of the Tuskegee syphilis experiment

She said they likewise have expressed reluctance about the prospect of a coronavirus vaccine. “They definitely don’t want shots of any kind,” said McCrory, who has begun conferring with her counterparts in the Alabama Conference of Black Mayors on strategies to allay suspicions.

Hobson City is about 100 miles north of the town whose name is synonymous with one of history’s most notorious breaches of medical ethics: Tuskegee, Ala. Beginning in the 1930s, U.S. government scientists tracked the progress of untreated syphilis in hundreds of black men, concealing the true nature of their research and withholding penicillin after it was identified as an effective treatment.

Instances of mistreatment and inequity are not confined to the history books. Studies have repeatedly found that black patients with broken bones, appendicitis or other serious ailments have been less likely to receive painkillers than white patients. In 2016, researchers at the University of Virginia found that half of the white medical students they surveyed were willing to entertain one or more false statements about biological differences based on race, such as the notion that African Americans have less-sensitive nerve endings than whites.

Such ongoing, personal experiences — rather than notorious episodes such as Tuskegee — are the foundation for many African American’s mistrust of doctors, said Harriet A. Washington, author of “Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present.

“This has gone on systemically for 400 years, and people have an oral history,” she said.

That history is now returning to haunt the U.S. medical establishment.

Federal health officials are considering offering some of the first doses of a coronavirus vaccine to the most vulnerable groups, including African Americans, Latinos and the elderly. But their motive for doing so — to speed medicine to people who have suffered inordinately high rates of severe sickness and death from covid-19 — is being questioned.

Del Bigtree, a national leader in the anti-vaccination movement, alleged that the true rationale for a phased release of a vaccine could be to observe its effects in black and brown people, turning them into unwitting test subjects.

“The United States of America has a history of testing on African American people,” Bigtree said in an interview. “To all of my African American brothers and sisters, I want them to know, look — it looks like they might try to create a fear base in you to make you part of a safety trial.”

That suggestion — vigorously denied by Fauci — is one that Brooks, the Colorado NAACP official, finds all too plausible. Black and 73 years old, she falls into a vulnerable demographic group to whom health officials would like to offer a vaccine to as soon as possible.

But if that day comes, she said, she already knows what her answer will be.

“It’s another experiment,” she said. “And I would hope African Americans would say, ‘No, you’re not shooting me up with that.’ ”

Eddy Palanzo and Scott Clement contributed to this report.

Read more:

Anti-vaccination leaders seize on coronavirus to push resistance to inoculation

A Virginia preacher believed ‘God can heal anything.’ Then he caught the coronavirus.

The first measles vaccine was named after him. But he didn’t vaccinate his son.

‘Heil Trump’ and an anti-gay slur scrawled on a church lead to an unlikely suspect — and a hoax

Coronavirus: What you need to know

Vaccines: The CDC recommends that everyone age 5 and older get an updated covid booster shot. New federal data shows adults who received the updated shots cut their risk of being hospitalized with covid-19 by 50 percent. Here’s guidance on when you should get the omicron booster and how vaccine efficacy could be affected by your prior infections.

New covid variant: The XBB.1.5 variant is a highly transmissible descendant of omicron that is now estimated to cause about half of new infections in the country. We answered some frequently asked questions about the bivalent booster shots.

Guidance: CDC guidelines have been confusing — if you get covid, here’s how to tell when you’re no longer contagious. We’ve also created a guide to help you decide when to keep wearing face coverings.

Where do things stand? See the latest coronavirus numbers in the U.S. and across the world. In the U.S., pandemic trends have shifted and now White people are more likely to die from covid than Black people. Nearly nine out of 10 covid deaths are people over the age 65.

For the latest news, sign up for our free newsletter.