Northwest Arkansas Democrat-Gazette
EXPERTS say diversity needed in vaccine studies.
Each fall, the Rev. Rob Newells urges the congregation at Imani Community Church in Oakland, Calif., to get a flu shot. He builds bridges every day between the country’s most vulnerable, marginalized communities and the medical system, defusing suspicion about HIV prevention treatments and educating people about medical research. He prods health care leaders to think harder about their messengers: Don’t send a white doctor to tell Black people what they “need” to do for their own good.
But with the first largescale coronavirus vaccine trial in people set to start today, Newells finds himself in an unfamiliar place: on the fence about what to tell his colleagues, his community, his cousins. Biomedical research, Newells knows, is a long and painstaking process — and he is concerned about a vaccine campaign that seems so narrowly focused on speed.
“What are we doing that we haven’t done before? I haven’t got good enough answers for me to tell my community, ‘This is just like we have been doing in HIV, where I’m comfortable there’s community at the table,’” Newells said. “What are we sacrificing for the speed, and if we’re not sacrificing anything, why couldn’t we move at this speed with other studies?”
The unprecedented scientific quest to end the pandemic with a vaccine now faces one of its most crucial tests, and nothing less than the success of the entire endeavor is at stake. A vaccine must work for everyone — young and old; Black, brown and white. To prove that it does, many of the 30,000 volunteers for each trial must come from diverse communities. It’s a scientific necessity, but also a moral imperative, as younger people of color die of coronavirus at twice the rate of white people, and Blacks, Hispanics and American Indians are hospitalized at four to five times the rate of white people in the same age groups.
“If this is a vaccine trial that enrolls a bunch of 20-somethings or white college graduates, it will not give us the information we need,” said Francis Collins, director of the National Institutes of Health.
Newells has experienced the reality behind the grim statistics within his own family. A cousin in St. Louis was on a ventilator for three weeks in March. An aunt and an uncle were hospitalized with covid-19, the illness caused by the virus. His professional experience as a biomedical advocate and executive director of the AIDS Project of the East Bay has taught him how crucial it is to include members of minority groups in trials if a treatment or drug is to succeed in the real world.
A decade ago, a revolution occurred in HIV, when the first pill regimen to prevent it was shown to be effective. But a trial in San Francisco was dominated by gay white men, Newells said, and as the drug became available through an extension to the clinical trial, it was those men and their social circles who embraced it.
“The Black people in Oakland didn’t really know about it, hadn’t been learning about it for a couple years,” Newells said. “We know from that experience that we have to engage people early in the research end of it, so by the time something gets approved, it’s not something brand new. I think it’s going to take time to talk to people about vaccine research.”
MINORITY ROLES
The race to create a coronavirus vaccine has so far played out in the arcane domain of biology. Can the vaccine trigger the body’s immune system to protect against an infection? Which vaccine technology is more promising? How long do virus-fighting antibodies that are circulating in people’s blood stick around?
The definitive answers to those questions will not come from laboratory experiments, but from large-scale human clinical tests that have long struggled to include minority communities.
Unethical research abuses of Black and brown communities, including the Tuskegee experiments that withheld syphilis treatments from Black Americans and Guatemalan experiments that deliberately infected prisoners with sexually transmitted diseases, have become cultural touchstones for many people of color, sowing deep distrust of medical authorities. That mistrust — coupled with unequal access to health care, information barriers and racial bias — means they are underrepresented in research trials.
“Now, along comes the pandemic, and it’s more important now than ever that we have minorities included. We should be jumping over mountains to try and make this work,” said Consuelo Wilkins, vice president for health equity research at Vanderbilt University Medical Center.
In normal times, it can take years of planning to create trials with representation from minority communities, a job that often comes down to human interaction and time. That task is all the more complicated now, with faceto-face interactions limited by the pandemic, community gatherings presenting a risk for virus spread and a rush to recruit. And it’s happening against the backdrop of a nation grappling with systemic racism.