Originally published in Business Insider
- Black Americans have been affected by the coronavirus at a disproportionate rate, but many have been wary to participate in vaccine trials.
- The mistrust, experts told Insider, stems from decades of medical experimentation on Black Americans.
- At least two pharmaceutical companies developing vaccines — Moderna and Pfizer — have been trying to recruit more Black participants in their trials.
- Some HBCUs, including Dillard University and Xavier University of Louisiana, have asked their own communities to consider enrollment in trials as well.
- Visit Business Insider’s homepage for more stories.
In September, Tina Pollard and her husband tested positive for the coronavirus. For Pollard, the side effects of the virus have “changed her life completely.”
Despite her enduring symptoms — “brain headaches,” fatigue, coughs, shortness of breath — and recovering from the virus, Pollard, a 52-year-old Black woman, told Insider that she currently has no desire to participate in COVID-19 vaccine trials.
“Until I know for sure that someone has taken this vaccine that looks like me, that may possibly struggle with some of the health issues that I have, then I may consider it,” Pollard said. “But right now, I don’t want to put anything in my body that I don’t know would work for me.”
But some members of the community share skepticism about a vaccine, the world’s biggest hope in halting the spread of the virus. It’s rooted deep in decades of exploitation from the medical community, experts say.
That skepticism appears to extend to phase 3 clinical trials for COVID-19 vaccines, where large numbers of people take vaccines to determine their efficacy.
There are 176 coronavirus vaccines in the works, with about a dozen in phase 3. The demographic breakdown of every trial isn’t available.
But at least two pharmaceutical companies have shown that they’re struggling to get diverse recruits. As of September 28, Pfizer reported that only 9% of its COVID-19 vaccine trial participants in the US were Black.
Moderna, which is producing another vaccine with the National Institute of Allergy and Infectious Diseases, is making strides to close its own gap. The company has posted the racial breakdown of participants for its 30,000-person study. In the last week of August, Black Americans composed only 9% of new enrollees. By the end of September, that figure had increased to 30%.
Historically Black Colleges and Universities (HBCU) are also keenly aware of the problem. The presidents of two of them — Dillard University and Xavier University of Louisiana— have asked members of their communities to consider enrolling, and joined a vaccine trial themselves.
“If we are not represented in the trial in significant numbers there are things we would not learn that is very important after the fact once the vaccine becomes fully applied,” Xavier University of Louisiana President Reynold Verret, who is also an immunologist, told Insider.
The US has a history of exploiting Black Americans for medical research
Black Americans are less likely to participate in coronavirus vaccine trials due to skepticism from the community towards physicians, which stems from a history of medical exploitation, experts say.
Communities have experienced experimentation since slavery, as with the case of James Marion Sims, who performed reproductive health experiments on enslaved women without anesthesia. More recently, the Tuskegee experiment, the case of Henrietta Lacks, and the Holmesburg Prison experiment have existed as notorious illustrations of why the mistrust exists.
“First and foremost you have to understand the historical implications and experience of Black Americans in this country as it comes to medicine,” Dr. Ala Stanford, founder of the Black Doctors COVID-19 Consortium, told Insider. “I would say that African Americans don’t believe in a mistrustful healthcare system because that’s the experience of many in this country.”
Pfizer, in particular, is working on these recruitment challenges by picking trial sites in areas that have diverse populations using a “data-driven approach” with The John Hopkins University and US Census Bureau, a company spokesperson told Insider, as well as using “patient-focused materials” to ensure transparency about participating and using ads to assist with enrollment efforts,
In general, Black Americans are approximately 13% of the U.S population but comprise only 5% of clinical trial enrollees.
The skepticism toward vaccine trials has been illustrated by Blair Kelley, a history professor at North Carolina State University, who drew attention for a tweet criticizing HBCU presidents for promoting the vaccine trials.
Kelley told Insider she respected the university leaders, but questioned the wisdom of putting more Black Americans “on the forefront of a vaccine trial.”
“When you go and you put it on your university letterhead and you ask people who are your underlings, as your staff and faculty, and to the students who are beholden to you to have an education … you don’t want to take that power for granted,” she said.
The participation of Black Americans is important in these tests, according to Dr. Anthony Fauci, because the community has been hit so hard. He told CNN that the trials run by Moderna and NIAID might need to get more than 30,000 participants.
“We’re going to keep going until we get there,” he told CNN.
A study published in May found that disproportionately Black counties accounted for 58% of coronavirus deaths and 52% of nationwide cases, Business Insider previously reported. In March, according to a CDC report, 83% of those hospitalized from COVID-19 in Georgia were Black. And one in four Black Americans knows someone who has died from COVID-19, an Insider poll found in June.
There are nearly 7.5 million cases and over 200,000 deaths linked to COVID-19 overall, according to Johns Hopkins University.
Lillie Williamson, assistant professor at the University of Wisconsin-Madison, said that other contexts like police brutality, racial discrimination in health, and voting can influence medical mistrust.
“All of these things are connected,” Williamson told Insider. ” We can’t think about these things in isolation. All of these things are intertwined and are reflective of broader societal issues in ways in which racism is embedded in all these systems. It’s unfortunate but not surprising.”
Since the start of the pandemic, the Trump administration has put out views about the coronavirus that conflict with science: President Donald Trump has downplayed the use of face coverings for months — while scientists champion them as a way to stop the spread. Trump has also baselessly and repeatedly claimed the virus will simply “disappear” one day.
“There have been so many mixed messages from the federal government about coronavirus that why would we believe you now?” Stanford said. “I think that’s a question in the thought bubble of many Americans, not just Black Americans.”
Health officials and HBCU leaders say Black American enrollment is necessary
Leaders of Historically Black Colleges and Universities (HBCU) have encouraged by members of their communities and other institutions to consider their cooperation in the clinical trials.
Presidents from Dillard University and Xavier University of Louisiana, both HBCUs, issued a statement in early September about their participation.
“Today, there are many regulations in place to assure the ethical execution of medical studies, including oversight by Human Subjects Committees with diverse membership and participation of clinicians of color,” they wrote.
Verret told Insider that the purpose of the letter was to share that he and his peer “rolled up their sleeves” to set an example and to help provide a “full disclosure of what the trial involves” to the community.
He said he participated in the trials when his physician told him the representation of Black Americans in the trial was low at the time. He said becoming well-informed about the process had alleviated his fears about it.
“Not being involved could have serious implications, but good and bad, and I think we need to know that,” Verret said. “We need to know that before the fact, and some people will have to step up, I was one of them.”
As Pollard recovers and faces side effects like numbness on the right side of her body and hand, she said she wants to see how the vaccine impacts “people of color, in the same age group and people who have underlying conditions.”
“I’m afraid to trust it,” she said.
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