The Doctor Is In For #blackdatamatters

Yesterday, patient advocate and founder of TOUCH Ricki Fairley joined breast cancer surgeon Dr. Monique Gary to discuss the importance of clinical trials for black cancer patients on her show The Doctor Is In. She was joined by fellow breast cancer survivors Chawnte Randall, Sheila McGlown, and Sharon Rivera, all of whom—along with Ricki—have shared their stories here on our blog, as well as Dr. James Lillard from the Morehouse School of Medicine. 

The purpose: to shed light on the underrepresentation of black cancer patients enrolled in clinical trials for cancer research and to advocate for broader participation from the community as part of the #blackdatamatters initiative.

“I believe black breast cancer is a different disease,” Ricki stated at one point during the broadcast; “We don’t know enough about our science and our physiology. We haven’t done enough research on our bodies to know what works right.”

Dr. Monique Gary added that testing is “being done primarily on European women and Caucasian women here in the states.” For the black community, she stressed the importance of improved research through greater participation. “We need to know our genomics, our genetics, and our tolerance to certain medications,” she said; “You cannot personalize medicine to a genome when you don’t have the data.” 

The panel discussed a number of reasons as to why black participation remains low today and trust was a major issue. “We still think about Tuskegee,” Ricki said, referencing the infamous experiment. “As a community we’re going to have to get past it. We have to do trials to move forward with medicine in general,” stated Dr. Monique; “We had to do trials to show that a lumpectomy was just as good as a mastectomy. We want treatments that are less toxic and more effective for our disease. We want to tailor it down to the cell in order to treat our cancer better. That’s gonna require some participation from us.”

Chawnte Randall added that black women are not offered the same access as other patients, describing her own experiences in the process. “I had been happy with my oncologist, but when I got my metastatic diagnosis he didn’t think trials were a good idea,” she recalled; “But I had learnt all this info about trials and I wanted to do immunotherapy, so I advocated for myself. I got a second opinion and they put me on the trial, which helped immensely.”

As a whole, the panel agreed that personalized medicine is where healthcare is headed, but that it couldn’t personalize its care to black patients without more research and more participation. “We want you to consider clinical trials and have tough conversations around the dinner table,” Dr. Gary said in summary; “It’s not acceptable to say: I don’t want to participate. Our people are perishing because we don’t know enough. We have to step up to the plate here.”

When asked about the benefits of clinical trials, Dr. Lillard said: “It’s really huge. As part of our study we actually provide free genetic sequencing as well,” adding that many clinical trials have additional benefits beyond the treatment itself. “Together with Ciitizen, we hope to use the access to your medical records to improve access to clinical trials. I’m excited to be working together.”

Latrisha Horne from Total Cancer Care joined the call as well to talk about some of the program’s successes with enrollment and how to better spread the word about clinical trial benefits. “Once people understand that their participation in trials can impact the future, they want to be a part of them. As African Americans, I know we fear being a part of experiments, but the more we talk about the benefits of precision medicine, the more open patients are to it. Even in the midst of COVID-19. We’re seeing a great response from patients right now.”

As to addressing the fear of trials in the black community, Sheila noted that finding a doctor you can trust is paramount. “What motivates me to go every few weeks is the fact that I can help others,” she said; “If, God forbid, my daughter gets cancer, my participation can potentially help her. Ultimately, it’s my legacy. I want to leave something positive in the world.”

Sharon added: “I was scared, but when someone new is diagnosed with this disease, it really makes me emotional. So I do this for them. Chemo is not easy. If I can save just one person from having to go through it, then I’m more than willing to do it.”

Tomorrow at 12 PM EST, Ricki Fairley and Dr. Monique Gary are headed back online for another discussion about clinical trials and the black community at the Touch BBCA Facebook page. For more information about the #blackdatamatters initiative, visit the website here. To view a recording of the entire program yesterday on BlackDoctor.org, click here.