A simple fact drives the push to get more Black people in clinical trials. If Black bodies aren’t included, the treatments developed from those trials may not be as effective for Black lives.
“The databases need to contain the genomic data of African Americans, too,” said Yoriann Hull, a clinical research coordinator at West Cancer Center & Research Institute. “As they’re developing treatments based on genomes within certain ethnicities, everyone has to have a presence. If we’re not there, we end up suffering in the long run.”
Different people may need different medicines. At least partly, that depends on genetics, family medical history, where and how they live and so on. Since 1999, federal policy has recognized those factors. It has urged that patients across the span of races be included in tests of everything from medical devices to therapeutic drugs that companies are developing and seeking federal approval to market.
Get more stories like this in your inbox every Wednesday in The Weekly.
Subscribe to MLK50’s newsletter
and get Memphis-rooted news and insights
right-sized for your neighborhood.
At West, remarkably, Black patients have accounted for up to 50% of participants in clinical trials done through its facilities in Memphis and Germantown. Taking a few basic steps helped West reach that participation rate, which is roughly five times the overall national average of Black patients in medical studies.
“We ask patients to participate. We spend time explaining the trial. We select trials [that] interest and meet the needs of our population,” said breast cancer specialist Dr. Gregory Vidal, West Cancer’s co-director of clinical research and an international lecturer on oncology therapy and drug development.
“Everyone who meets study inclusion criteria,” emphasized researcher Andrea Curry, West Cancer’s manager of patient-reported health outcomes, “is approached about getting into a trial. Everyone.”
Interested in joining a clinical trial? This webpage at ClinicalTrials.Gov lists, among other facts, the location and timeline of clinical trials; researchers and funders of trials; the type of intervention or treatment involved and related research methods; eligibility requirements for prospective trial participants; and whether participants are offered a stipend.
White men, historically, have been the vast majority of clinical trial enrollees, often yielding medicine more tailored for that group than others. For example, some of the earliest beta-blocker drugs for slowing heart rate and, thereby, lowering blood pressure worked better for white people than for many Black people, resulting in what some say were preventable, premature deaths, some researchers have argued. More recently, tests of those drugs on Black patients have led to beta-blockers more suited for them.
Making places like West Cancer, with its relatively robust Black enrollment in trials, more the norm than an outlier requires additional common-sense reforms, experts say.
“A lot of clinical trials are done from 9 to 5. Depending on their life circumstances, different groups may or may not be able to participate in that,” said Michelle Martin, co-director of the University of Tennessee Health Sciences Center-based Tennessee Clinical and Translational Science Institute.
New ways to boost trial diversity are a focus of her recent research, being peer-reviewed before publication in a medical journal and conducted with a physician from the University of Alabama at Birmingham Heersink School of Medicine. That forthcoming study comes on the heels of an analysis by Cornell, Harvard and Northwestern universities finding that Black patients are more willing to participate in a clinical trial when Black researchers are conducting it. The Journal of Health Economics published that study last month.
“I’m glad this topic of diversity continues to receive attention,” added Martin, also founding director of the Center for Innovation in Health Equity Research on UTHSC’s Memphis campus. “Race is a consideration. But thinking beyond race, we’ve got to consider a person’s lived circumstances and experiences, and how that impacts their ability to be involved. Sometimes, those things travel together. How do we mitigate those circumstances that are barriers?”
Medical trials, experts say, should better address many among a host of realities: the environmental and economic conditions of patients’ neighborhoods, patient income or occupation, access to health care amid growing shortages of doctors and other clinicians, and whether patients have reliable transportation to a trial site or a wireless connection for self-reporting what a trial aims to gauge.
Black people comprise about 14% of the U.S. population but an estimated 10% of clinical trial participants overall. They are as few as 5% of enrollees in trials regarding specific diseases, including cancer. The figures, however, may not tell the full story. Participants’ race was not listed in 57% of more than 20,000 U.S. trials conducted from March 2000 through March 2020, according to one of the latest and largest analyses. The trials enrolled 4.6 million patients, according to Harvard Medical School and Stanford University School of Medicine researchers, whose work was published in July 2022 in The Lancet.
More than two decades ago, Michael Sheffield enrolled in the first of several clinical trials of drugs to treat his insomnia. At the time, his sister was in medical school studying pediatrics. She told him about trials and the dire need for Black trial enrollees.
“When we met, the doctor running the trial … was pleasantly surprised that I was Black,” said Sheffield, a health industry executive with a master’s degree in communications management. “We talked about just needing more Black people to participate.”
The health industry should adjust its messaging and recruitment around trials, Sheffield said.
“A lot of companies or organizations don’t recruit for medical and drug trials in places where Black people go,” he added. “Maybe you want to recruit at an HBCU or something like that … If you explain it, they will understand on a different level and want to participate. Plus, college kids need money and a lot of trials pay.”
Some clinical trials offer a stipend or expense reimbursement. The appeal of others is the potential for cutting-edge, experimental medicine to achieve what existing medicines do not. As part of that treatment, patients get more than the usual number of follow-up visits to the doctor.
Years before she started working at West Cancer, researcher Curry said her favorite uncle enrolled in a randomized trial. Only after such a trial ends do patients and their families learn whether they received a drug or other intervention that’s being developed or a placebo containing no medicine. Curry’s uncle did get the actual drug. It didn’t heal him. But his participation meant much to his family.
“He was contributing to something important. Maybe not for him, but for the field of medicine and, maybe, for another patient down the line,” Curry said.
She riffs on that theme when she meets patients face-to-face, explaining how critical it is for Black people to influence the present and future of medicine. She repeats it while enrolling participants for her office’s current observational study, which provides no hands-on care but lets cancer survivors self-report how they adhere to and assess their follow-up care.
To get a wide assortment of participants in trials she’s collaborated on at West, Curry had to stop prejudging patients. An elderly Black woman forced that shift during Curry’s first few months on the job.
“This particular study used a cellphone app to answer surveys,” Curry said, recalling the patient. “And I was like, ‘Well, she meets the criteria, but she’s probably going to tell me, ‘No.’ She was in her 80s. When I got to her, she had an iPhone and an Apple Watch. She started flipping that phone around, showing me things.
“We can look at an area code and say, ‘Oh, but they won’t have a computer.’ But I’ve learned to never discredit anyone. I approach every single one of them with the same intensity and joy and respect. If you want to increase your recruitment, give everyone a fair chance.”
West Cancer Center, years ago, began listing everyone on its multiracial staff of physicians as co-investigators on medical trials. (Those trials counted 250 participants over the 12 months included in West’s 2023-24 annual report.) The move has been part of the center’s broader effort to break down barriers. If a trusted health care provider deems a trial beneficial, their patients likely will, too, Vidal said.
“Our patients trust their MDs and, therefore, have confidence in their recommendations,” he wrote in an email to MLK50. “… We consider clinical trials an active part of patient cancer management.”
Health and criminal justice journalist Katti Gray’s news coverage has appeared on ABC.com, CBS.com, and in The Guardian US, the Los Angeles Times, Newsday, Reuters, The Washington Post and other publications.
This story is brought to you by MLK50: Justice Through Journalism, a nonprofit newsroom focused on poverty, power and policy in Memphis. Support independent journalism by making a tax-deductible donation today. MLK50 is also supported by these generous donors.