“The reasons I hear African Americans will not participate are heartbreaking and disappointing. I have heard about the Tuskegee experiment a lot.”
Calethia Hodges has an arduous task: persuade Black people who have a deep mistrust of experimental drugs and medical institutions to participate in clinical trials to help find a vaccine for the deadly coronavirus.
It is quite the paradox. African Americans have been disproportionately devastated by COVID-19, but they are inadequately represented in human studies that would treat a disease that has claimed more than 116,000 lives in the United States. Almost a quarter of those were Black, according to a study called Color of Coronavirus by APM Research Lab.
“And that’s why I do what I do,” said Hodges, a clinician at Infinite Clinical Trials outside Atlanta. “And that’s why I am here, in this neighborhood that is predominantly African American.”
African American participation in the trial is critical, medical experts have said. Researchers of pharmacogenetics — the science that studies how genetic factors affect reactions to drugs — stress that medicine could produce different results based on race and genetic, socioeconomic and environmental dynamics.
Translation: A vaccine might not work in African Americans if African Americans do not participate in the clinical trials to create the drug.
And so the power of persuasion ranks high on Hodges’ job. She has to overcome the Tuskegee Study of Untreated Syphilis in the Negro Male, when infected Black men were solicited to be a part of a 40-year study (1932 to 1972) to treat the disease with penicillin and were offered free medical exams, free meals and burial insurance.
But they were not given the drug, and 28 of the original 399 Black men died of syphilis, 100 died of related complications, 40 of their wives were infected, and 19 of their children were born with congenital syphilis. That dark past remains a hurdle to clear.
“The reasons I hear African Americans will not participate are heartbreaking and disappointing,” Hodges said. “I have heard about the Tuskegee experiment a lot. And I have heard ‘They [doctors] will give me the virus.’ And ‘They will put a chip inside me.’ Many say their parents raised them ‘to never participate in medical research.’ It’s all tough to overcome.”
Dr. Larry Graham, a retired pulmonologist, understands the lack of trust but insists that African Americans have to get over it.
“Genetics related to racial differences make it essential that we be involved in broad-based and diverse clinical trials of medications and vaccines,” he said. “The expanding discipline of pharmacogenetics has taught us that we may respond differently than other races to both medicines and vaccines. We must be sure it works in Black folks. This can only be determined by our inclusion in the research-based trials of such vaccines.”
But Dr. Aletha Maybank, the American Medical Association’s chief equity officer and group vice president of its Center for Health Equity, said she is concerned that there is not an urgency from institutions to include African Americans in the myriad vaccine studies underway.
“There is a fear with COVID-19 how intentional the hundreds of trials are about diversity,” Maybank said. “I’m not clear and would make the assumption that they are not intentional. If so, I haven’t heard about it yet.
“But if the distrust pre-COVID-19 was strong, the chances are even less now that Black people will participate. I worry about exploitation and medicines’ being used on patients without their knowledge or consent.”
Hodges said coronavirus human trials at her location will not occur for another month or two. She has been successful in getting African Americans to participate in other trials — most recently for women who experience “hot flashes” — through distributing educational pamphlets. “Information is power,” she said.
It also helps that Hodges is Black. “They see me and give me a chance to at least share my information with them,” she said.
And in extreme cases, she said, she invokes the experience of some cancer patients to make her point.
“When the patient with cancer hears, ‘There’s nothing else we can do,’ they turn often to clinical trials,” Hodges said. “It’s the last resort. With the coronavirus, the question becomes: ‘Would you rather be on a ventilator or try a drug?’ That’s a view that might get people to participate.”
For Maybank, the way to bridge the divide is simple: work at it.
“With any relationship, you build it,” she said. “Folks doing work from leading institutions have asked, ‘How do we build trust?’ Well, it’s not rocket science. It’s about building relationships. Are you getting to know me beforehand? Are you speaking in a language I understand? Are the concepts broken down so that they are digestible? Are you present? Are you giving resources to our neighborhoods beforehand? That’s not rocket science. It’s building a relationship. That’s how you build trust. And trust is a fundamental value in humans. There’s no rocket science behind it.”
Dr. John Maupin, the former president of Meharry Medical College and Morehouse School of Medicine, said a collection of historically Black colleges and universities that focus on public health is working to form a consortium that will focus on “culturally sensitive care.”
“Specific clinical research,” he said. “How do you administer treatments? Do you present a cure at an early or later stage? Is a higher dosage needed? Those questions have to be answered, because everybody’s different. Races have different genetic makeup and genetic impact. So it’s critically important that clinical trials are across the spectrum of individual differences that pick up their minute differences that may not be noticed from one racial makeup to another. That’s why we have to be there.”
Maupin acknowledges that the challenge to change minds is significant. “The problem is: Do I trust them? That’s why the ability for a Morehouse and Meharry to have a clinical research center is vital,” he said. “It will allow Black people to come.
“We have to have more [HBCUs conducting trials] because people will trust them more than they will some other institutions. I’m not saying all are untrustworthy. I’m saying there would be greater trust in institutions led by those who come from the patients’ backgrounds.”
Hodges took it a step further. “I often tell patients they have a chance to take a drug that not only could help them, but could be very important to the next generation.”
CORRECTION (June 17, 2020, 10:45 a.m. ET): A previous version of this article misstated the estimated percentage of Black Americans who have died from the coronavirus, according to a study called Color by Coronavirus by APM Research Lab. Almost a quarter of the more than 116,000 Americans who have died were Black, not more than half.
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