What’s pharma doing wrong to improve trial diversity? ‘Everything’
When Ricki Fairley pictures the perfect clinical trial site, she imagines “a beautiful Victorian house on a street in a Black neighborhood” with a wrought iron gate in the front, nudged open just a few inches. On the front porch, a Black grandmotherly figure welcomes patients with a hug, takes their children to a playroom and feeds them spaghetti. She then takes the patient to a treatment room with a comfortable chair, a hand-crocheted blanket and a cup of tea with fresh mint from the garden out back. The soul tunes of Luther Vandross play softly in the background, as Black physicians move in and out of the room.
In her “ideal world,” Fairley would build such a house “in every Black neighborhood in the top 10 cities” across the U.S. to increase clinical trial enrollment among the Black community.
While she has yet to realize that vision, as the CEO and founder of Touch, The Black Breast Cancer Alliance, an advocacy organization aimed at decreasing the breast cancer mortality rate for Black women, Fairley is working to improve the dismal, yet all-too-familiar trial participation statistics. And as a survivor herself, she’s particularly focused on helping Black women.
The Black participation rate has declined consistently over the last decade — falling almost 3% just between 2020 and 2021, a report from the IQVIA Institute for Human Data Science found. And those numbers have real health-outcome consequences.
In breast cancer, for instance, Black women make up less than 3% of clinical trials and have a 71% higher risk of death and 39% higher recurrence rate of breast cancer than their white counterparts. The dearth of data on how the disease and its treatments impact Black patients accounts for some of the discrepancy in outcomes, Fairley argues.
“When you look back in history, there were no Black women in the clinical trials for the drugs that we have as standards of care. For Cytoxan, Adriamycin, Taxol, Taxotere, Herceptin — there were no Black women,” Fairley said. “They're not working to the extent that they should. We need drugs that have been tested on our bodies.”
Still, even with recent FDA guidance that makes diversity a “must have” in clinical trials, pharmas are failing to enroll representative demographics and Fairley doesn’t see anything changing unless the industry completely reimagines its recruitment tactics.
“Pharma hasn't known what to do yet.” she said. “It's hard to get everybody into trials, but they can't get Black women because they're not talking to them the right way.”
What exactly needs to change? Well, according to Fairley, everything.
Fear of the unknown
For starters, the industry needs to begin breaking down the emotional barriers to trial enrollment, she said. While companies are beginning to tackle physical barriers — like location and transportation —these efforts aren’t likely to bear fruit if patients are still weary of science and the medical industry. And chief among the emotional barriers for the Black women she works with is a fear of the unknown.
“They don't understand how the science works. They say ‘I'm gonna get the sugar pill and die.’ And so they're afraid of being a guinea pig,” Fairley said, noting that much of the time “their only reference point is Henrietta Lacks, or the Syphilis study.”
But quelling these concerns is a matter of explaining the science and impact of trials in everyday terms. When Fairley speaks with patients on a personal level and explains that everything from a dog’s heart medication to Advil to cancer medications were once tested in clinical trials, they begin to get it. Then, when she tells them that they’re going to get a medication — whether it’s the standard of care or new drug candidate — they’re even more on board.
"My question in these campaigns is ‘What's Black about it?’ You've got to show that you really care about the audience and are willing to invest in it."
CEO, Touch, The Black Breast Cancer Alliance
Of course, the other major piece of the puzzle is who is relaying the message. Familiar faces, like the Black grandmotherly figure at the door in Fairley’s dream world, are integral.
“They don't trust doctors; they don't trust researchers. They trust other ‘breasties,’” Fairley said of the patients she works with. “Right now, they're going to Dr. Google and they're seeing pronouns like ‘you’ and ‘they.’ When they come to our site, the pronouns are ‘we’ and ‘us.’”
The small difference in language lets the patients know that they’re rather part of a broader movement. Touch extends that message by exclusively featuring Black breast cancer survivors in the informational videos on its site so that patients are hearing the message from people who not only look like them but have been in their shoes.
However, for representative messaging to work, it must be carried through all materials. For instance, Fairley pointed to a Big Pharma campaign on Facebook for a pneumonia vaccine that “had these beautiful ads with a cute little Black couple and the beautiful Black ladies,” but then linked to a website exclusively featuring images of white patients.
“It's like bait and switch. I immediately lost trust because they weren't intentional about their message,” she said. “My question in these campaigns is ‘What's Black about it?’ You've got to show that you really care about the audience and are willing to invest in it.”
A community affair
Changing individual patients’ minds might not be enough. After all, when a patient decides to enter a clinical trial, their whole support network also needs to be on board with the decision. And when mistrust is pervasive, that’s a lot more difficult.
“Even when a patient brings up a trial to a doctor, she still walks away not being informed enough to convince her family that she should do it,” Fairley explained. “She's convinced, she goes home and her mom says ‘You're gonna get the sugar pill.’ And she can't explain to her mom how the science works, so she changes her mind.”
To combat such scenarios, Touch began running a radio ad on hip-hop stations in 10 major cities targeted at young Black women “to make them aware of the science and have them start these conversations at home.”
Data on that specific campaign is murky, but anecdotally Fairley said the organization received countless calls from women asking if they could sign up for a clinical trial, and many of them hadn’t even been diagnosed. It’s just one sign that Touch’s tactics are working, she said.
Since its founding in 2020, Touch has enrolled over 8,700 Black women in breast cancer studies. And Fairley’s already been asked to extend the work into other areas.
“I do believe that the issue of (a lack of) knowledge about clinical trials is the same (across disease areas),” she said. “People always ask me, ‘What are you going to do next? Can you come to Africa? Can you talk to Latinos? Can you do heart disease?’”
And while Fairley remains steadfastly focused on reaching her goal of “mortality rate parity” for Black women, she said if the industry adapted similar tactics and made clinical trials seem as comfortable and safe as visiting a neighbor down the street, recruitment numbers across indications might finally look different.