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“‘Are we going to be guinea pigs for the vaccine?’”
For months, Dr. James Hildreth’s sister had been asking questions like this.
While public health officials were urging Americans to take measures to help stop the coronavirus, high rates of infection within Black communities fueled his sister’s mistrust, said Hildreth, the president of Meharry Medical College, an historically Black institution in Nashville. She had no desire to be vaccinated, and thought officials wanted people like her — Black people — “to prove the vaccine is safe so others will take it.”
Those concerns have been echoing from communities across the U.S., according to Hildreth, a member of the Biden administration’s COVID-19 Health Equity Task Force. He also has worked as a Food and Drug Administration adviser on the veting of the COVID-19 vaccines’ safety and effectiveness for their emergency use authorization. He knows whose lives are at stake if he doesn’t take these roles seriously.
The coronavirus pandemic repeats a truth that communities of color in the United States have been saying for generations: They suffer worse health outcomes compared to white communities, and systemic racism drives those disparities.
At each turn during America’s COVID-19 response, Black, Latino and Indigenous people have endured higher rates of infection, lack of access to and insurance coverage for testing and treatment and death. Despite greater vulnerability to the virus, disproportionately fewer people of color have been vaccinated across the U.S. compared to white people as the nation’s immunization campaign ramps up.
Memories of historical atrocities run long and suspicions high when it comes to medical care. Black Americans are more likely than white Americans to say they do not trust their health care provider, rooted in both contemporary experiences — like that of Dr. Susan Moore, a Black physician who died of COVID-19 after posting on social media that her pain and calls for help were not taken seriously — and other painfully recent history.
From 1932 to 1972, federal researchers examined the effects of syphilis on Black men when left untreated. None of the 623 participants in the United States Public Health Service Syphilis Study were told what was happening, and, in one of the worst examples of unethical medical research in modern U.S. history, researchers secured no one’s consent. They were told they had “bad blood,” but researchers withheld actual treatment from them, even after penicillin was discovered as an effective, affordable and readily available therapy for the disease.
Freddie Lee Tyson was one of the men in the study. A carpenter, loving husband and father of nine children in Tuskegee, Alabama, Tyson worked throughout his adult life to build a better world for himself and his family. Tyson served as a deacon in his church and a firefighter. With his hands, he built his children’s Catholic school and the barracks at present-day Moton Field Municipal Airport, where the Tuskegee Airmen excelled as the first Black pilots in the U.S. military during World War II and became national heroes.
But with all of his accomplishments, he didn’t deserve to be “treated as though he didn’t have any worth,” said his daughter, Joyce Christian.
He was never told him he had contracted congenital syphilis from his mother or that he was enrolled in the study, and since he never developed symptoms, he wouldn’t have guessed it either. When the Associated Press leaked reports that the men had been denied needed medical care for decades, one of Tyson’s sons, who was enlisted in the Air Force, called his family with the news. Researchers ended the study, and later a phone call came for Tyson confirming he had been a test subject. Shortly thereafter, he independently found his name on a list of participants. Tyson’s family was first shocked and then angry — “all the things you have when you find out a loved one has been in a study so inhumane,” said Christian, 72, a retired nurse who told her family’s story to the PBS NewsHour.
Christian said that after a few days, her father had advice for one of her sisters: “‘I can’t do anything about it now, but you can. You all can do something about it and never let this happen again to anyone.”
Freddie Lee Tyson, center, sits next to his wife, Johnnie Mae Neal Tyson, while surrounded by seven of their nine children. Tyson was one of 623 Black men who were unknowing included by the federal government in the secret United States Public Health Service Syphilis Study between 1932 and 1972. Photo courtesy of Joyce Christian.
Growing up, Alanna Nichols was warned about the hazards of the U.S. health care system for Black patients. Nichols’ mother, a nurse for more than two decades in Ohio, told her about the horrors in Tuskegee, and that Black mothers and newborns suffered worse outcomes during childbirth than white mothers and infants. Be careful about taking new prescription drugs, her mother would caution.
“Underrepresented groups are always targets for bad experiments,” said Nichols, 44, an entrepreneur and social worker by training, who added she keeps up with new peer-reviewed research on health
When the coronavirus emerged, her family — including her husband, a military veteran and U.S. Postal Service worker who has been in remission from prostate cancer — took health precautions seriously and began to avoid travel. Nichols said she obsessively washed her hands and wore face masks.
In December, the Food and Drug Administration began authorizing vaccines to prevent COVID-19 infections for emergency use, the first time the agency had done so to stop a viral pandemic.
The only people Nichols knows personally who have gotten vaccinated are teachers at her son’s school, but she said her husband will be “first in line” when it’s his turn to get vaccinated.
Nichols, though, still has too many questions about the vaccine candidates. What group saw the weakest results? What are the side effects? Everything about the pandemic remains “so new and confusing,” Nichols said, who craves more transparency about what is happening.
“It makes you a little paranoid to jump so fast without knowing the actual [vaccine] data points that’s driving urgency,” she said. The only trusted messenger she said she would believe is a retired health care professional “who don’t have skin in the game” and who “understand what the paranoia or needs are as it relates to underrepresented communities.”
“I need them in the conversation right now,” she said.
After the birth of her first child, Gabriela Momen endured dark feelings she eventually realized were symptoms of postpartum depression. A married Mexican-American mother of five in Round Rock, Texas, Momen raised concerns about her welfare during a check-up. But “My doctor just dismissed them” and chalked everything up to the “stress of being a homemaker and just my culture,” she said. Momen never received mental health care, and it had another lasting effect.
“It made me not trust white people to be in charge of my well-being,” she said.
Nearly a decade later, the coronavirus pandemic and calls for racial justice following the death of George Floyd opened Momen’s eyes to other forms of insidious, casual racism. In her predominantly white neighborhood, Momen, 34,says it wouldn’t matter if her family drove better cars or had more money to throw around than their neighbors. They would always be viewed as different because of the color of their skin, their religious beliefs as Muslims and their last name (her husband is Palestinian American).
Momen said she feels “like the vaccine was not created for us,” and resents calls from public officials to get vaccinated for COVID-19.
“It makes it feel like rich, white men made a vaccine that worked for them and now we’re going to have to take it to protect them,” Momen said as she nursed her 1-year-old child, the sound of her four older children participating in virtual classes humming in the background.
A self-described middle-class supporter of “Medicare for All,” Momen said she feels like national calls for more expansive health care coverage are ignored, “but when they have a vaccine, they shove it down our throats.”
Even if her family decides to eventually get the vaccine, she is discouraged by the current lack of shots near her home in suburban Austin. Members of her household (who include her in-laws) are also concerned about data that suggest some vaccines may be somewhat less effective at preventing infections from certain COVID-19 variants.
Momen said she needs more people who look like her and her family to advocate for vaccines and play a greater role in developing them. Only then, Momen said, will she gain enough confidence to accept any vaccine used against the coronavirus.
Kymberly Hartfield, 45, began following headlines about COVID-19 when it was still just a blip in the American news cycle. When China started to construct pop-up hospitals in Wuhan to treat patients of a mysterious pneumonia-like illness, Hartfield said she sensed catastrophe and “really started paying attention to what was going on with the virus.”
Hartfield, a Black mother of three and a community activist in Marietta, Georgia, has avoided vaccines for years; she has never gotten a flu shot. When the Trump administration appeared to inject politics into public health campaigns, such as promising that a vaccine would be ready ahead of Election Day, “I was a firm ‘hell no,’” Hartfield said.
Yet Hartfield kept a close eye on the vaccine effort. From her perspective, Operation Warp Speed “eliminated red tape,” and the technology used to develop the two first vaccines had been advanced over several years, not rushed overnight. That gave Hartfield “valid reasons to trust the speed of it all,” she said.
It wasn’t until Christmas during a phone call with her Great Aunt Lois when she made up her mind to get vaccinated. Her 79-year-old aunt lives nearly 400 miles away in Moss Point, Mississippi, and has been a fixture throughout Hartfield’s life.
Being unable to see her aunt for months on end has been one of the hardest things for Hartfield to accept about the pandemic, she said. Her aunt isn’t comfortable using computers or even smartphones (“she’s just super old school”), so Hartfield can’t text her aunt photos or see her facial expressions when they do catch up on the phone. When her aunt asked Hartfield if she planned to get vaccinated for COVID-19, Hartfield said no.
“‘If you’re not going to get vaccinated, how are we going to see each other?’” Hartfield said her aunt asked.
That struck Hartfield. And then she heard a doctor quoted in a news report say, “Whatever the side effects are, we can treat that easily. It’s COVID we can’t treat easily.”
“That made sense to me,” Hartfield said. And together with missing Great Aunt Lois, Hartfield’s misgivings eased.
The coronavirus and George Floyd’s death exposed rampant inequalities in the U.S. with such force that “there’s no turning back,” Hartfield said. “Most people recognize there’s systemic, structural changes that need to be made and the appetite to do so is greater than ever. That’s why I call it a blessing in disguise.”
But if public health officials think they can convince skeptical people in Black communities to get vaccinated, they won’t, Hartfield added. Instead, she said, experts should offer transparent information to these communities and empower them to decide for themselves — as she did. To get there, she thinks that policymakers and public health officials must be more creative in reaching out to communities of color and people who are discouraged and struggling to pay the rent and feed their families: “It’s overwhelming to the point where people give up and say, ‘If it happens, it happens. I’ve got other things to deal with. I don’t need another hard thing to deal with.’”
Joyce Christian of Somerville, Tennessee, with her husband, Will and grandchildren Will IV and Anara Christian on Jan. 6, 2021. She is a retired nurse who wants to encourage people in the African American community to take the COVID-19 vaccine. Photo by © Karen Pulfer Focht
Over time, Dr. James Hildreth’s sister began to change her mind about getting vaccinated for COVID-19, he said. It took several weeks of seeing friends and colleagues in her community get their shots to make her more comfortable. Now she is asking him which of the approved COVID-19 vaccines she should get.
More than simply “hearing information that you need to hear,” Hildreth said, it is important for his sister and others to be “hearing it from someone that you trust.”
Stories like Hildreth’s may soon be more abundant as more and more people get vaccinated and trust grows. But monitoring just how equitably federal, state and local governments handle distribution may still present challenges. In a recent report from the Centers for Disease Control and Prevention, there was no race or ethnicity data for roughly half of all vaccine doses distributed from mid-December to mid-January. That’s problematic, Hildreth said, because until the U.S. keeps better records, “we can’t truly know what the real disparity is. We need to collect the data to know where all our resources need to be.”
Freddie Lee Tyson’s experience, and the larger history of atrocities weigh on his daughter every day. To ensure no family suffers in the same way, Christian, her siblings and the descendants of those 623 men established the Voices For Our Fathers Legacy Foundation to honor their memory.
“The men had no idea,” Christian said. “With COVID, we know what’s happening. We know about the facts.”
The virus is real and has killed more than 500,000 in the U.S. The vaccines, developed by “the best minds in the world,” are the best way to end this pandemic, Christian said. So she, too, has decided to get vaccinated because the only way out is to “rely on science. We have to believe in science.”
Laura Santhanam is the Data Producer for the PBS NewsHour. Follow @LauraSanthanam
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