When Ricki Fairley was diagnosed with triple negative breast cancer in 2011, her odds of surviving didn’t look too promising. “Triple negative breast cancer is the worst one,” Fairley says. “It has the highest mortality rate, it’s the most aggressive, and Black women get it at 3 times the rate of white women; we really don’t know why.”
Fairly went through a double mastectomy, six rounds of aggressive chemotherapy, and six weeks of radiation treatment — and was, briefly, free of disease. But Fairley says her cancer came back a year after her initial diagnosis, and her doctor said that she had only about two more years to live.
“My doctor only had two cases of triple negative — both women died in nine months,” says Fairley. “I said, ‘Well, I can’t really die right now, because I have a daughter in college.”
She sought out other treatment options and ultimately connected with a different doctor who put her on two drugs, which were experimental for triple negative breast cancer at the time.
Ten years later, Fairley is still here.
In the summer of 2020, she cofounded Touch, the Black Breast Cancer Alliance (BBCA), along with Valarie Worthy, a fellow breast cancer survivor of over 20 years. “She had helped a TNBC breastie start an organization about 15 years ago called TOUCH Therapy,” Fairley says. Worthy’s friend passed away about a year later, but Fairley says that Worthy, “held onto the nonprofit because she said God would give it another purpose.” The organization is geared toward supporting Black women with breast cancer, educating them on the disease, and encouraging them to participate in clinical trials, in effort to help advance research in breast cancer in this population.
Touch BBCA’s primary goal is to “eradicate Black breast cancer,” and “advance the science,” Fairley says, with an emphasis on partnering with other organizations who have a similar focus. “We are an alliance, so we’re trying to work collaboratively with anyone who wants to be in our sandbox — doctors, researchers, other pharma companies,” Fairley says. “Until we work together collaboratively, we’re gonna keep dying.”
Services They Provide
At the beginning of 2020, Touch BBCA and BreastCancer.org partnered together to make clinical trials more accessible for Black women with breast cancer through When We Trial. There, you can learn more about clinical trials, and how to find and participate in your area. “We only have 3 percent participation in clinical trials,” Fairley says. “The newer drugs that are being developed have no participation. They're never going to work for us unless we participate in the research.” Additionally, through Touch BBCA’s website, you can connect with other members of the Black American breast cancer community, access several general breast cancer resources, and find a number of educational fact sheets.
Because of Touch BBCA’s desire to connect with other organizations, they often partner with others when it comes to hosting larger events. “Instead of creating our own events, we are actually layering ourselves on top of events that are already happening, and going into the community where people are already doing stuff and have a relationship,” Fairley says.
On the first Saturday of each month, Touch BBCA hosts their support group, TOUCH Talk. “We have TOUCH Talk retreats and we have a private Facebook group to talk to people, and encourage them, and support each other,” Fairley says.
Fairley is also the cohost — along with Monique Gary, DO, a breast surgical oncologist at Grand View Health in Sellersville, Pennsylvania — of a web series called The Doctor Is In. The show focuses on discussing breast cancer, specifically breast cancer in Black Americans, in a relatable and accessible way. It also often features advocates and experts on the disease. “It's kind of the WebMD for Black people,” Fairley says. “We started just talking about breast cancer and everything about it. We get about 5,000 people in the audience with us in real time.”
Fairley says it’s important to both hear and have these conversations, specifically for Black American women, because of the cultural biases that keep health from being a main topic of discussion in Black American families, says Fairley. “Culturally, we just don't talk about health until somebody's really sick and dying,” Fairley says. “It's not a conversation; it's a sign of weakness.”
“Get s*** done,” Fairley says. “I participate in clinical trials myself all the time, so I can walk the walk. We're trying to really bring this important message to our people, to our women.”