America's coronavirus epidemic has had an outsized effect on people of color, yet clinical trials for coronavirus vaccine candidates mostly consist of white people. But now, as volunteer recruiters look to encourage more people of color to participate, they are confronting widespread mistrust and misinformation in their own neighborhoods.
'This is the work of the devil'
Jorge David Gutierrez, for example, is working on a clinical trial for Moderna's coronavirus vaccine candidate that's being conducted by researchers at Brigham and Women's Hospital. As part of his work, Gutierrez and others have been reaching out to communities in the Boston area that are predominantly home to people of color and those with diverse racial and ethnic backgrounds, STAT News reports.
"If we want to make sure this vaccine works for everyone, then we need to include everyone," Gutierrez explained.
Typically, Gutierrez meets people in the parking lot of the Brookside Community Health Center, which twice a week offers walk-in coronavirus testing and a variety of other health care services. According to STAT News, the lines of people seeking services at the center "[s]ometimes … wrap around the block—a measure of the surrounding neighborhoods' need."
When Gutierrez approaches a person waiting in those lines, he asks for the person's permission to talk about the coronavirus vaccine trial, hoping to establish a feeling of trust. According to STAT News, if he receives permission to discuss the trial, Gutierrez will say something along the lines of: "We're looking for volunteers in the hopes of finding a vaccine that will protect people from getting or developing [Covid 19]. It will involve around six visits over two years. You will not get or develop Covid because of the vaccine. We will not expose you to the virus. You will live your normal life."
But Gutierrez and other workers face a lot of mistrust and misinformation among members of the communities in which they're trying to recruit, and Gutierrez's own mother serves as an example.
According to Gutierrez, his mother, who grew up in Colombia before moving to the United States, has been spending most of her time at home during the epidemic—and spends a lot of her time online, which Gutierrez believes has influenced how she thinks about coronavirus vaccines.
"She's said, 'This is the work of the devil, to get a chip in us, to track us,'" Gutierrez explained.
According to Nicole Taikeff Gabela, a member of Gutierrez's team, there is a certain culture of fear and distrust of medical trials in immigrant communities. That's why she and other outreach workers avoid using words like "investigacion" when speaking to Latin communities because, while the word means "study" in English, it carries connotations related to law enforcement in some cultures, STAT News reports.
"It can cause a lot of harm, it can push people away," Taikeff Gabela said. "We can't ignore that there's a specific climate that has caused a lot of fear in immigrant communities."
Gutierrez said he's heard a host of worries about signing up for a coronavirus vaccine trial in the communities his team is serving, which are home to Dominicans, Guatemalans, Puerto Ricans, Salvadorans, and others. Gutierrez said he's heard people ask, "Is this the Trump vaccine?" and "Are they going to ask me about my citizenship, my legal status?"
According to Paulette Chandler, an epidemiologist who's helping to coordinate trial recruitment for Brigham and Women's, it's important that recruiters approach those subjects gently when trying to get people to sign up for a coronavirus vaccine trial.
"You don't try to push people into this, it's not like a hard business sell," she said. "Ideally you provide the information about what it is, about what the benefits and what the potential harms are, and then you let the person decide, because it truly is an act of altruism."
'I won't be used as a guinea pig for white people'
Recruiters in Northview Heights, a predominantly Black neighborhood in Pittsburgh, are facing similar feelings of distrust and misconceptions in their community.
According to the New York Times, outreach groups in the neighborhood are trying to convince Black people in the community to enroll in Moderna's coronavirus vaccine trial occurring in Pittsburgh, and they're hoping the relationships volunteers have built with local residents could help to boost their effectiveness.
But residents are still wary. For instance, at an informational meeting held by one group of recruiters in Northview Heights, one member of the community said, "I won't be used as a guinea pig for white people"—a statement that reflects deep-rooted mistrust of medical professionals in Black communities that stems from historical and widespread instances of mistreatment of Black patients by researchers and other medical professionals.
Another member of the community said it's safer to wash their hands, stay away from others, and drink orange juice to ward off Covid-19 than to participate in a vaccine trial, the Times reports.
In response, some recruiters are sharing their own decision to participate in trials. For example, when an older woman in the community asked Carla Arnold, a recruiter from the outreach group who is well known in the community, whether Arnold would allow researchers to inject her with an experimental coronavirus vaccine, Arnold responded: "They already did."
Arnold explained, "I am a proud African-American woman. … 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."
Rev. Paul Abernathy—a priest and Iraq War veteran who runs the Neighborhood Resilience Project, a mostly volunteer organization that provides food, medical care, and other services to the lowest-income neighborhoods in the city—also is conducting outreach, and he's said outreach needs to look different in these communities, which also are facing epidemics of violence, food insecurity, poor education, job loss, and poverty.
"We cannot talk about a vaccine without acknowledging these other epidemics," Abernathy 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?'"
Progress being made
There are some signs that outreach efforts from teams like Gutierrez's, Arnold's, and Abernathy's are making headway.
For instance, after Abernathy's team's first week of recruiting, the percentage of people of color in the Pittsburgh area in the vaccine registry had risen from 3% to 8%, the Times reports. People in the registry aren't committed to participating in a coronavirus vaccine trial, but they agree to be contacted by researchers—which is a start.
According to Elizabeth Miller, co-director of the University of Pittsburgh's community engagement program for its Clinical and Translational Science Institute, teams like Abernathy's are making an impact. "The community health deputies have been instrumental in communicating about the vaccine registry in authentic ways," she said.
And the teams' work is making a difference in the makeup of Moderna's coronavirus vaccine trials, which aim to enroll a total of 30,000 participants nationwide. According to Moderna, about 18% of participants in its trials were Black, Latin, American Indian, or Alaska Native as of August 21. But as of October 2, Moderna said about 33% of its participants were "from diverse communities," STAT News reports (Boodman, STAT News, 10/7; Hoffman, New York Times, 10/7).