'I Won't Be Used as a Guinea Pig for White People' - The New York Times

PITTSBURGH — The recruiters strode to the front of the room, wearing neon-yellow vests and resolute expressions. But to the handful of tenants overwhelmed by unemployment and gang violence in Northview Heights, the pitch verged on the ludicrous.

Would you like to volunteer for a clinical trial to test a coronavirus vaccine?

On this swampy-hot afternoon, the temperature of the room was wintry. “I won’t be used as a guinea pig for white people,” one tenant in the predominantly Black public housing complex declared. Another said she knew of five people who had died from the flu shot. Make Trump look good? a man scoffed — forget it. It’s safer to keep washing your hands, stay away from people and drink orange juice, a woman insisted, until the Devil’s coronavirus work passed over.

Then an older woman turned the question back on Carla Arnold, a recruiter from a local outreach group, who is well-known to people in the Heights:

“Miss Carla, would you feel comfortable allowing them to inject you?”

Ms. Arnold, 62, adjusted her seat to face them down, her eyes no-nonsense above a medical mask.

“They already did,” she replied.

The room stilled.

Recruiting Black volunteers for vaccine trials during a period of severe mistrust of the federal government and heightened awareness of racial injustice is a formidable task. So far, only about 3 percent of the people who have signed up nationally are Black.

Yet never has their inclusion in a medical study been more urgent. The economic and health impacts of the coronavirus are falling disproportionately hard on communities of color. It is essential, public health experts say, that research reflect diverse participation not only as a matter of social justice and sound practice but, when the vaccine becomes available, to help persuade Black, Latino and Native American people to actually get it. (The participation of Asian people is close to their share of the population.)

People of color face greater exposure to the virus, in part because many work in front line and essential jobs, and have high rates of diabetes, obesity and hypertension, all of which are risk factors for severe Covid-19. But even when those factors are accounted for, people of color still appear to have a higher risk of infection, for reasons researchers cannot yet pinpoint, said Dr. Nelson L. Michael, an infectious-disease expert at the Walter Reed Army Institute of Research.

“Historically, we test everything in white men,” said Dr. Michael, a member of the vaccine development team at Operation Warp Speed, the public-private partnership set up by the White House. “But the disease is coming after people of color, and we need to encourage them to volunteer because they have the highest burden of disease.”

Now, academic researchers at trial sites like Pittsburgh’s are turning to neighborhood leaders to attract more diverse pools of participants. The Urban League of Greater Pittsburgh sponsored an information webinar and the New Pittsburgh Courier, which has a large, African-American readership, published articles about the trial.

And in the Hill District, which contains the city’s oldest Black neighborhoods, volunteers from the Neighborhood Resilience Project, a faith-based initiative that offers a food bank, clothing and a health clinic, are trying to reach people where the pandemic is raging in crowded, multigenerational homes.

The recruiters knock on doors and buttonhole neighbors. Sitting on worn sofas in small, close apartments, they address fears with respect and facts.

Image Carla Arnold, right, discussing volunteering for a coronavirus vaccine trial with Cecilia Goshay in Ms. Goshay’s home. Credit... Chang W. Lee/The New York Times Image Ms. Arnold handing out information on the vaccine outreach project. Credit... Chang W. Lee/The New York Times

Ms. Arnold carefully explained to the tenants her decision to participate in the trial for the vaccine being developed by Moderna, a company that has received pledges of $1.5 billion from the Trump administration for its effort.

“I am a proud African-American woman,” she said. “As African-Americans, we always seem to get less out of things that go on. I want us at the forefront of this. I want to make sure that Black people are represented. I’m going by faith that these people won’t do to African-Americans what they did to us in Tuskegee. I’m holding them accountable.”

The hard resistance in the room wobbled. Pandemic experiences tumbled forth.

A granddaughter was sick with it. A woman knew a 24-year-old who had caught it, and it was beating him up. Covid had put a neighbor down the hall in a coma.

In frustration, a woman shouted: “I asked paramedics why people here are getting sick, and they said, ‘There’s no social distancing.’ But you can’t social-distance in a place like this, everyone on top of each other.”

Ms. Arnold seized the moment. Go door to door with me, she pressed. Talk to folks about Covid-19 safety, about signing up for the vaccine registry.

The registry, a bank of people willing to be contacted about the clinical trials, does not commit you to getting the experimental vaccine, she added, only to being called by researchers.

“You’re not going to be the guinea pig,” the supervisor of the volunteers, Tyra L. Townsend, chimed in. “White people are.”

That is because, she said, most of the vaccine trial registrants so far are white.

The room hesitated, perched on the precipice of decision-making. No firm commitments. But interest, definitely.

The recruiters said they would return to the Heights at 6 p.m. to begin knocking on doors.

Join us?

Science vs. scientists

Black and Latino people, along with Native Americans, are being hit far harder by the coronavirus than white people are. A recent analysis by the Kaiser Family Foundation shows that from March through mid-July, people of color were five times more likely to be hospitalized for Covid-19 than their white counterparts and that through Aug. 4, the rate of death among Black people, relative to their share of the population, was at least twice as high. In Allegheny County, which includes Pittsburgh, the Black population’s rates of cases and hospitalizations have been almost as stark.

While Black people stand to benefit greatly from a coronavirus vaccine, surveys show that they are the group least likely to trust one. In a poll last month by the Pew Research Group, only 32 percent of Black respondents said they were likely to take it, compared with 52 percent of white respondents. Historically, Black people have been more hesitant than other groups to get vaccines, especially the flu shot, and are also far less likely to volunteer for medical research; one study showed their participation hovering at about 5 percent. They are 13 percent of the population.

The mistrust is built on present disparities as well as a long history of abuse. Studies show that Black people in the United States have less access to good medical care than do white people and their concerns are more likely to be dismissed. Notorious medical experiments on Black people continue to exacerbate suspicion. They include surgeries by Dr. J. Marion Sims, a 19th-century gynecologist, on enslaved Black women, the 40-year-long Tuskegee study, in which doctors deliberately allowed syphilis to progress in Black Alabama sharecroppers, and researchers’ taking of cells without permission from Henrietta Lacks, an African-American cancer patient, in 1951.

“It’s not the science we distrust; it’s the scientists,” said Jamil Bey, head of the UrbanKind Institute, a Pittsburgh nonprofit organization whose programs include virtual town halls on racism, the pandemic and vaccine trials.

Some public health experts said that the percentages of volunteers from various groups should replicate the disproportionate impact of the virus but that they hope at least to mirror the population so that about a third of participants are Black, Latino and Native American.

By mid-September, 407,000 people in the United States had enrolled in the vaccine trials through the website for the national Covid-19 Prevention Network, but only 11 percent identified as people of color.

Image The Rev. Paul Abernathy, a priest and the founder of the Neighborhood Resilience Project, at St. Moses the Black Orthodox Christian Church in Pittsburgh. Credit... Chang W. Lee/The New York Times

Trials for vaccines developed by the drug companies Moderna and AstraZeneca are being conducted at local sites across the country, including the University of Pittsburgh. In June, Dr. Elizabeth Miller, a co-director of the community engagement program for the university’s Clinical and Translational Science Institute, reached out to local groups to help with recruitment.

At early meetings, Rev. Paul Abernathy, 41, an Orthodox Christian priest and Iraq War veteran who is Black, spoke up: The national strategy of radio commercials, online ads and church sermons was not enough to persuade people to enroll, he said. They needed to be pulled into conversation, one on one. And he had just the team to do so.

In 2011, Father Paul, as he is known locally, founded an organization that he recently renamed the Neighborhood Resilience Project. Run mostly by volunteers, it provides food, counseling, medical care and other services to the city’s poorest neighborhoods. In April, in response to the pandemic tearing through those communities, his group trained volunteers to check on their neighbors. These “community health deputies” offered masks to young people hanging out on corners and picked up food and medicine for older people.

Why not have the deputies recruit for the vaccine trials? suggested Father Paul, a Pittsburgh native whose ancestry is African-American, Syrian and Italian-Polish. “People trust folks who look like them, who know them,” he explained.

For weeks, his offer languished, and the registry remained stubbornly white.

“Do they think we are unable to comprehend the vaccine information?” Father Paul asked in exasperation.

In late August, as the deadline for enrollments approached, the researchers relented: Go for it.

Conversations

On a recent morning, Father Paul’s team climbed aboard a modest R.V. to fan out to some of Pittsburgh’s struggling neighborhoods. “There is a great deal that is against us,” Father Paul said. “And we have to be honest about that. Our community needs more than what we have. But with a good spirit and a willing heart, miracles can happen.”

They rolled through the streets, carrying backpacks full of bottles of water, bags of Cheez-Its and cards with contact numbers. Father Paul rode shotgun, wearing his clerical collar and trademark fedora. As the R.V. paused at traffic lights, people waved at him. “How y’all doing?” he shouted back.

Image The Neighborhood Resilience Project’s R.V. making a stop in the Hill District in Pittsburgh. Credit... Chang W. Lee/The New York Times Image Father Paul (in an orange vest), and Father Martie Johnson, Jr. (in a yellow vest) talked with residents both about the Covid vaccine trials and the traumatic impact of a recent shooting. Credit... Chang W. Lee/The New York Times

At one stop, LaRay Moton, 61, a community health deputy, introduced Father Paul to her neighbors in the Bedford Dwellings, a public housing complex: Lori Strothers, 56, and her daughter Jayla, 26.

Then they learned that the vaccine was the reason for the priest’s visit.

“It’s scary,” said the younger Ms. Strothers. “You’re being filled with unknown things. There’s not enough data.”

“So how much data would you need to feel comfortable?” Father Paul asked.

“I’m a visual person,” she explained. “I need to see it on paper.”

He turned to his deputies. “Let’s work to get spreadsheets to her,” he said.

At a store in the housing complex’s basement, stocked with free surplus and secondhand goods, the air was musty and the aisles tight and twisting, crammed with clothes, dishes, bicycles, books.

Almost unseen amid the clutter was the store’s founder and proprietor, Effie Williams, 80, a tiny figure enthroned in her office chair.

Ms. Moton, the volunteer, knew better than to try to distract people who were shopping. Instead, she pitched to Ms. Williams, whom she wanted to help spread the word.

Ms. Moton is something of a community matriarch in the Bedford Dwellings. Earlier that day, she had been visiting older tenants, knocking loudly at every door and calling out: “Put your face mask on, baby! You got company!”

Image Effie Williams, left, the proprietor of the Bedford Dwellings’ “free store,” listened as Father Paul and Ms. Moton spoke about the Covid-19 vaccine trials. Credit... Chang W. Lee/The New York Times Image Ms. Moton, left, and Father Paul prayed with Janice Jenkins in Ms. Jenkins’s apartment in the Bedford Dwellings. Credit... Chang W. Lee/The New York Times

Then she had plopped herself down beside the tenants, asking about their chemotherapy and their blood pressure, deftly working up to flu shots and vaccine registries.

Now in the store, Ms. Moton launched into her spiel. “I’m here to talk about wellness checks and Covid-19, ” she said to Ms. Williams. “What are your thoughts about the vaccine?”

Ms. Williams cocked a dubious eyebrow.

Unruffled, Ms. Moton plowed ahead. She turned to two women who were minding young children and helping Ms. Williams with the store.

“What about you?” Ms. Moton asked. “Would you be interested in participating in the trial here in Pittsburgh?”

“I’m scared of side effects,” Shaquala Miller, 29, said.

Father Paul stepped forward, explaining that so far, the only reported reaction was a temporary swelling at the injection spot. This trial was already in Phase 3. Phase 1, he explained, was “high risk and low benefit.” By the time Phase 3 rolled around, “you’ve got low risk and high benefit.”

A handful of shoppers drew close. Father Paul cranked it up a notch.

“We want to make sure that the vaccine will get into our community and work for us,” he said. “I guarantee you it will be in other communities!”

“That’s right!”

“Don’t leave us out!”

“When is it starting?”

Ms. Moton practically shouted with glee: “Now!”

Ms. Miller said tentatively: “Maybe I’ll sign up. Just as long as you know it’s safe. I have three kids. ”

Ms. Williams suggested that Ms. Moton leave cards with the registry information in the store. And she decided to give the vaccine a try. “I guess it doesn’t bother me,” she announced. “I’m old.”

“I can help you register, Miss Effie,” Ms. Moton offered.

And then in a low voice, she asked, “Miss Effie, have you eaten today?”

Ms. Williams looked down at her lap.

Handing her a bag of Cheez-Its, Ms. Moton said, as she made a note: “Don’t you worry. I’ll get that taken care of right away.”

One more trauma

Image Father Paul and other volunteers in the R.V. on their way to seek vaccine trial volunteers. Credit... Chang W. Lee/The New York Times

To Father Paul, Covid-19 is one more deadly trauma in a litany that has shaken Black neighborhoods. People come to his organization seeking food, health care and clothes and wind up talking about stabbings, overdoses, robberies, fires, domestic violence.

“I was seeing more PTSD in my community than I saw in Iraq,” he said, referring to his yearlong tour of duty as a staff sergeant in 2003, during which he saw combat.

Upon his return, he became an outspoken opponent of the Iraq War and completed masters degrees in divinity and in public and international affairs. About six years ago, Father Paul began working with researchers from Duquesne University and the University of Pittsburgh to develop a manual for community development, informed by the sustained, incapacitating trauma so prevalent in the neighborhoods his group serves. Now, often summoned by the Pittsburgh police, Father Paul’s volunteers arrive after a shooting or a stabbing to administer emotional first aid.

The weight of so many traumas on a community, he said, is in part what makes it so hard to ask for volunteers for the trials. Daily survival can feel so all-consuming that participating in an institutional research experiment seems utterly beside the point.

“We cannot talk about a vaccine without acknowledging these other epidemics,” Father Paul said. “Our kids aren’t being educated, and food lines are longer. Hope is gone, too. So if you say to people, ‘That makes volunteering for the vaccine trials more meaningful,’ they will say: ‘Are you kidding me? My house got shot at last night. And you really want to talk about Covid?’”

A change of plans

Image A trauma response team, in orange vests, visited the Three Rivers Manor apartment complex, where a baby had been killed, offering “trauma teddies” and face masks. Credit... Chang W. Lee/The New York Times

At 6 p.m., as promised, his teams returned to Northview Heights. But there would be no door-to-door vaccine pitches this evening.

A few nights earlier, during a gunfight, a stray bullet had pierced a wall of a nearby public housing complex, killing a 1-year-old baby as he slept in his crib. His two grieving grandmothers lived in Northview Heights.

Father Paul and his trauma response teams, wearing orange vests, had already been to the scene of the shooting the previous night. Orange tape marked the bullet holes. People peered at the teams through broken shade slats, and stared from stoops, turning away as they approached.

A woman who was sobbing and cursing beckoned. Her teenage stepson had also been killed over the weekend, and she wanted to let loose.

“I watched the officers try their hardest to save that baby!” said the woman, who identified herself only as Tyffani, 44.

Father Paul held her hand. She bowed her head as he prayed. “There is no prayer more powerful than the prayer of a broken heart,” he said. “Heal her in her brokenness and raise her up in peace.”

A bulwark had been breached. Neighbors who had watched warily began to accept comfort from the trauma teams, as well as masks and information cards.

Now, at Northview Heights, a balloon release to honor the grandmothers’ grief had been hastily arranged for the evening.

Image Charniece Cabbagestalk, in yellow shirt, comforted Kamia Jones, center, whose 1-year-old grandson had been killed by a stray bullet. Ms. Cabbagestalk gave Ms. Jones a mask with the boy’s picture on it. Credit... Chang W. Lee/The New York Times Image Balloons released at a ceremony for the slain infant. Credit... Chang W. Lee/The New York Times

More than 100 people, many carrying floating, bobbing bouquets of white and colored foil balloons, assembled on the sloping lawn next to the apartments. The weeping grandmothers, wearing T-shirts printed with the baby’s smiling face, were swarmed by mourners. On the periphery, children played tag, and teenagers set off firecrackers.

Almost no one wore a mask.

“This is our culture of death — memorial sites, murals and balloon releases,” said Father Paul. “This is what we do. We don’t even have to think about it.”

The teams’ backpacks included cards with information about vaccine trials, as well as cookies and small stuffed animals.

“We ask parents if we can give their kids a teddy bear,” explained Roxane Plater, a volunteer. “The kid smiles, the parents ask what we do — and that’s our opening.”

Ms. Plater scoped out the crowd. “Do you need a mask?” she asked. People looked startled, as if in a fog, and gratefully accepted one, or produced their own.

A domino effect unfurled: as more people put on masks, others pulled on their own. The teams offered cards with contacts.

The balloons were distributed, followed by keening, anguished speeches. A GoFundMe page for funeral expenses was announced. Then, all at once, flocks of balloons floated away, some tangling in trees and telephone wire, others sailing higher.

And, abruptly, the gathering was over.

As people walked away, Charniece Cabbagestalk approached a weeping grandmother of the dead baby and offered a black cloth mask imprinted with a photo of the woman’s grandson. Since the pandemic began, Ms. Cabbagestalk has made more than 100 such masks as gifts for people whose loved ones died violently.

Father Paul shook his head sadly. “A mask for Covid and violence,” he said. “Two pandemics hitting the Black community in one image.”

Progress

Image Diane McCray, left, and John Burwell, community health deputies, talked to a woman waiting at a bus stop about the Covid-19 vaccine trials. Credit... Chang W. Lee/The New York Times

By the following week, there were signs that the outreach efforts were helping. The portion of people of color in the Pittsburgh area in the vaccine registry had risen to 8 percent, from 3 percent. Because trial leaders can choose whom they finally enroll, they have been increasing the percentage of nonwhite subjects. Moderna reported that nationwide, as of Sept. 28, 26 percent of those enrolled were Black.

Dr. Miller, the University of Pittsburgh professor who coordinates outreach for the local vaccine trials, was elated. “The community health deputies have been instrumental in communicating about the vaccine registry in authentic ways,” she said.

During the week, the recruiters had confronted an array of questions.

Won’t melanin protect me from Covid?

If you had Covid, can you go in the trial?

How do you know that white folks won’t get one vaccine and Black folks another?

How do you know what they’re putting in the Black vaccine?

At a weekly meeting over Zoom, the health deputies and the researchers reviewed a new script to help answer those questions.

Then Ms. Townsend, who trains volunteers, asked Ms. Arnold, the Northview Heights community health deputy, to speak about why she had decided to lead by example and get an injection.

Years ago, Ms. Arnold said, she was visiting her father, a prostate cancer patient, in the hospital. She saw drip bags attached to him, including one filled with yellow liquid. What’s that? she asked. Platelets, she was told.

It was then that she learned that there weren’t enough African-Americans in the blood donor base to help all the Black patients with cancer or sickle cell disease. That was when she began to donate blood.

“I was just trying to save him and other African-Americans,” she said, “because we didn’t have a fair shot at getting better sooner.”

And now, she said, how could she ask people in the community to volunteer for the coronavirus vaccine trials if she hadn’t done so herself?

“That’s why I joined this vaccine study,” Ms. Arnold said. “So African-Americans can have a seat at the table.”

Image Neighborhood Resilience Project volunteers speaking to a resident at the Three Rivers Manor complex. Credit... Chang W. Lee/The New York Times
https://www.nytimes.com/2020/10/07/health/coronavirus-vaccine-trials-african-americans.html