Mistrust lingers in Black community
Memories of Tuskegee study, inequalities create obstacles
“We have this COVID and I want to keep my family safe, keep myself safe and keep the people around me safe so we can continue to do business and keep the doors open and then take care of the people. A haircut makes people feel good.”
Anthony Gathers
Barbershop owner
Anthony Gathers owns two barbershops, one in south Phoenix and one in Chandler.
On a recent morning, the 50-year-old Gathers stood in his south Phoenix shop, Ageez Hair Center, trimming the hair of one of his regular customers, Jerry McPherson, who comes in weekly for a haircut.
Gathers wore a face mask and gloves to protect himself and others from the new coronavirus and he insists that anyone who enters his shop also wear a mask. If a customer walks in without a mask, Gathers provides one.
So it’s not surprising that Gathers was eager to get the COVID-19 vaccine as soon as possible.
“We have this COVID and I want to keep my family safe, keep myself safe and keep the people around me safe so we can continue to do business and keep the doors open and then take care of the people,” Gathers said, his electric clippers buzzing away. “A haircut makes people feel good.”
There was a part of Gathers, however, that was hesitant about getting the vaccine. He was concerned that the vaccine was developed seemingly so quickly, and therefore apprehensive the vaccine might have been rushed, a concern shared by many Americans.
But as a Black American, Gathers had another concern — one rooted in a shameful event in American history.
“You know, back in the day, all those stories from the ‘40s, that came up,” Gathers said.
He was referring to the infamous
Tuskegee study.
Over a 40-year period starting in 1932, the government’s Tuskegee study denied proper treatment to hundreds of impoverished Black male sharecroppers in Alabama without their knowledge or consent in order to study the progression of syphilis. The study continued even after a cure in the form of penicillin was developed in the 1940s. The untreated men with syphilis died, went blind, or suffered other several health problems from the disease, which they also passed on to others.
Although many Americans are unfamiliar with the Tuskegee study, it remains embedded in the minds of many Black Americans decades after it ended.
“It’s very prevalent in the community,” said Gathers, whose barber shops caters mostly to Black Americans. “I hear that every day.”
The study, officially titled the “Tuskegee Study of Untreated Syphilis in the Negro Male,” fomented a long-lasting mistrust of the medical community among Black Americans that continues to this day, experts say.
Limited supplies of the vaccine and obstacles in getting access to the vaccine such as transportation and technology have made it more difficult for many Black Americans to get the vaccine, Dr. Edmund Baker said.
He is the medical director at the Equality Care Center, which provides affordable health care to underserved populations. Baker has helped organize vaccine events aimed at helping Black people and other people of color gain access to the vaccine and to persuade them to get it.
But mistrust rooted in the Tuskegee study is also an obstacle, Baker said.
“That was 40 years of not treating people for syphilis and just watching the progression of syphilis all the way through some terrible outcomes and allowing it to spread through the community . ... And the government knew about it and never stopped it, so there is a lot of trust issues,” Baker said.
Mistrust has fueled hesitancy
Mistrust rooted in the Tuskegee study has contributed to a greater hesitancy of getting the COVID-19 vaccine among Black Americans, who have received disproportionately fewer doses of the vaccine but have disproportionately higher rates of COVID-19 hospitalizations and deaths, experts say. The COVID-19 hospitalization rate for Black Americans is nearly three times higher than non-Hispanic white people and the death rate is nearly twice as high, according to the CDC.
In Arizona, more than 2.5 million people had received at least one dose of the COVID-19 vaccine as of April 12, according to Arizona Department of Health Services data.
But only 54,011 Black people had received at least one dose, which is 2.1% of the total, according to the data. Black people make up 5.2% of the state’s population, according to census data.
In Maricopa County, more than 1.3 million residents had received at least one dose of the vaccine as of April 12. Of those, 40,024 were Black people, or 3% of the total. Black people comprise 6.4% of the county’s population, according to census data.
Nationally, about 120 million Americans have received at least one dose of the vaccine. Of the nearly 67 million for which race and ethnicity data are available, 8.4% were Black people, according to Centers for Disease Control and Prevention. Black people make up 13% of the U.S. population.
“I think it was a watershed event,” Dr. Marcella Alsan, a professor of public policy at Harvard Kennedy School, said of the Tuskegee study.
Her research has shown that after the Tuskegee study became public in 1972, medical mistrust increased, and doctor visits and life expectancy among Black men decreased. Black men have the worst health outcomes of any racial or ethnic group in the country.
“Similar to COVID itself, it has really shown a light on how unequally people are being treated and were being treated in this country,” Alsan said.
But Alsan was careful not to pin mistrust of the medical community by Black Americans solely on the Tuskegee study. She said there have been other historical events of mistreatment and exploitation before and after the study that have also contributed to that mistrust.
“The reason that I’m trying to be really careful here is because I don’t want to take away from the everyday racism that people still feel in medicine, which provides ample opportunity for there to be disparities even without the legacy of Tuskegee,” Alsan said.
Alsan noted that there is a common belief that as part of the Tuskegee study Black men were injected with syphilis. Although there is no evidence Black men were actually injected with syphilis, that narrative also contributes to the mistrust many Black people continue to have of the medical community, Alsan said.
Her research has shown that doctor visits among Black men are much higher when they are assigned a Black doctor as opposed to a white doctor.
Overcoming mistrust because of historical reasons is one of the biggest challenges in getting more Black Americans to get the COVID-19 vaccine, said Olga Davis, a professor at Arizona State University’s Hugh Downs School of Human Communication, whose work focuses on reducing health disparities in the Southwest.
That mistrust is rooted not only in the Tuskegee study, but in ongoing racism, Davis said.
She cited a new voting law in Georgia that critics say is intended to suppress Black voters and the death of George Floyd, a Black man who died last summer in Minnesota after being handcuffed and pinned to the ground by a white police officer who is on trial for murder. The trial, Davis said, was causing all Americans but especially Black Americans “to relive” Floyd’s death all over again.
“So Tuskegee I would say is just a moment in time, and yes it has had its rippling effects of mistrust and distrust of the medical profession. But it would have been something historical and a specific moment in history had it ended right there. It has not,” Davis said.
Davis said more needs to be done to overcome the hesitancy many Black Americans have about getting the vaccine.
There needs to be an understanding that African Americans are not refusing to get the vaccine “but their certainly is a hesitancy,” Davis said. “Hesitancy is not the same as refusal.”
On March 30, Black members of the National Academy of Medicine posted a video online urging Black Americans to get vaccinated for COVID-19, in part to address hesitancy over the vaccine.
Animated rap videos on YouTube produced by Hip Hop Public Health also urge Black Americans to get the vaccine.
“Trust me. Believe me. We’re not going to have another Tuskegee,” a rapper sings.
‘I don’t want to die’
The Tuskegee study came up during a recent telephone town hall with Gov. Doug Ducey and Arizona Department of Health Services Director Dr. Cara Christ.
A caller name Michael in Glendale said on one hand he wanted to get the vaccine because he has preexisting conditions that put him at risk of dying of COVID-19. But on the other, he didn’t know if he could trust the vaccine.
“I’m an African American, and it hasn’t been that long since the Tuskegee experiments. So I’m not sure if I can trust it or not,” the caller said. “But I do want to get it because I don’t want to die. ... I’m kind of in a Catch-22 here.”
Christ responded: “We would recommend that you get vaccinated and we know that there is mistrust due to historical reasons. … That is why we have been working with faith leaders and community leaders to show that this vaccine is safe and effective.”
Responding to hesitancy
Steve Elliott, a spokesperson for the Arizona Department of Health Services, said the state recently held a separate telephone town hall specifically aimed at addressing vaccine hesitancy in the African American community.
“We recognize that Arizona and other states face deeply rooted historical challenges when it comes to administering the COVID-19 vaccine in communities where there is longstanding mistrust of the medical community,” Elliott said.
For the event, Christ and Ducey joined Alan “AP” Powell, founding chairman of the Herozona Foundation to answer questions during the event that drew 10,422 participants.
Because of “the Tuskegee experiment, and some of the things that happened in the past, a lot of African-Americans have some reservations about participating in some of this stuff,” Powell said in an interview.
The state is expanding a pilot program “using highly targeted and culturally appropriate outreach” to areas of Phoenix with higher percentage of African-Americans, he said.
Elliott noted that a recent CDC report ranked Arizona third in the nation in getting COVID-19 vaccinations to socially vulnerable people, based on race, ethnicity, language, socioeconomic status and vehicle access.
“We were pleased to see Arizona’s efforts win this national recognition, but we know there is much more outreach to be done as vaccine supply begins to approach demand,” Elliott said in a written statement.
The state plans to launch a public service announcement that includes a diverse group of influencers, among them several African American community leaders.
Maricopa County has made several efforts to address mistrust issues and reduce disparities, including working with community and faith-based groups to hold pop-up vaccine events aimed at diverse and hard to reach populations, said county spokesperson Ron Coleman.
For instance, the Mayo Clinic and First Institutional Baptist Church, which has a predominantly Black congregation, will hold a vaccine event on April 16, 17 and 18, Coleman said.
“We know that there are multiple obstacles to getting vaccine — some logistical, and some rooted in historical events and policies,” Coleman said in a written statement.
Registration is being prioritized to members of First Institutional Baptist Church and residents of Tanner Development housing who have no access to technology or transportation, Coleman said. Registration will open to the public once First Institutional And Tanner clients who lack technology access and transportation have had the opportunity to register, to ensure access and equity.
The county recently held a vaccine event at Harmon Park to serve residents of ZIP codes that have had low vaccine rates, including 85009, 85007 and other neighboring ZIP codes. Both ZIP codes are located in south Phoenix. About 82% of the eligible residents in the 85009 ZIP code remain unvaccinated as of April 12, and about 61% in the 85007 ZIP code, county data shows.
Access, mistrust biggest obstacles
At Ageez Hair Center, portraits of Dr. Martin Luther King Jr. and former President Barack Obama hang on the wall.
The barbershop is located on Southern Avenue near 7th Avenue in the 85041 ZIP code of south Phoenix. County data shows more than 68% of the eligible residents in that ZIP code have not been vaccinated for COVID-19.
Several customers said they believe mistrust and a lack of access has prevented many Black people from getting the vaccine.
“I think it’s a combination of both,” said McPherson, the customer who had stopped by for his weekly haircut.
“Some folks have a mistrust, which means they haven’t even tried to get the vaccine,” said McPherson, 39, who is director of economic empowerment at the Greater Phoenix Urban League. “And those who have tried, there have been obstacles in actually getting it.”
He had not gotten the vaccine, but intended to after having contracted COVID-19 in February. His 46-year-old cousin died of the disease.
One of the biggest obstacles, McPherson said, was getting online to register for the vaccine and then trying to score one of the limited slots once vaccines become available.
“There is the need for education, informing them of what the vaccine is and how it works and the need for it and also having to educate them of how they can actually get it,” said McPherson.
“When vaccines have become available, you have to be online at a certain hour and folks are at work, folks are traveling, are commuting, folks are on the bus, and they don’t even have the opportunity to register for the vaccine, even if they did want it,” McPherson added.
Jerrold Boudreaux, 51, who works in information technology, who also stopped by Ageez for a haircut, said he knows many Black people are hesitant to get the vaccine because of mistrusted rooted in the Tuskegee experiment. He believes the mistrust is less prevalent among Black people who belong to higher socioeconomic groups.
“Everyone I know is getting the vaccine or trying to get the vaccine,” Boudreaux said.
He got his first shot in March at COVID-19 vaccine site at Chandler-Gilbert Community College and was scheduled for his second dose on April 7.
“I had transportation and the ability to get out there, but I live in this part of town,” Boudreaux said.
But he said he understands that many Black working-class people in south Phoenix don’t have the time or transportation to get to the ChandlerGilbert Community College site or are reluctant to travel outside of their own communities to get the vaccine.
He lamented that a COVID-19 testing site had been set up at nearby South Mountain Community College, but not a vaccine site.
“You had a test site there, why can you not have a vaccine site there?” Boudreaux said.
Gathers, the owner of the barbershop, got his single Johnson & Johnson vaccine on March 13 at Cortez Park by volunteering at a vaccine event hosted by Equality Health.
Gathers heard about it from Baker, the doctor who runs the Equality Care Center. Baker invited several Black community leaders to the vaccine event in hopes that by getting the vaccine they would dispel some of the hesitancy others have in getting it.
“As people started getting the vaccine, I’ve seen people’s minds change,” Gathers said.