Ricki Fairley is CEO of TOUCH Black Breast Cancer Alliance. Fairley is an award-winning veteran that has transformed her strategic acumen into breast cancer advocacy. Fairley’s a founding member of #Black Data Matters in partnership with Ciitizen, The Center for Healthcare Innovation and Morehouse School of Medicine. The following is an excerpt of the conversation she had with Dr. Weaver.
WEAVER: As a triple negative breast cancer survivor and thriver Ricky’s purpose, passion and ministry is to bring attention, science and action to eradicating breast cancer for Black women. What does having triple negative mean?
FAIRLEY: There are several subtypes of breast cancer. There are three main kinds. One is based on an estrogen. Another one is based on progesterone. Last one is based on a protein called HER2.
If you test negative for all three of those it’s called triple negative. It has the worst outcomes with the highest mortality rate. It’s the most aggressive breast cancer, and it’s the only breast cancer that doesn’t have a drug to prevent recurrence. You may have heard of taking Tamoxifen or something for five years, we don’t have a drug. It comes back after a year or two and it’s killing us in crazy numbers.
It also affects Black women at three times the rate. Almost 30% of the breast cancers that Black women get are triple negative. It’s a nasty disease and we’re getting it at younger ages at later stages. We only have one treatment option for early-stage triple negative and two treatment options for metastatic triple negative that are targeted for our disease.
WEAVER: Why are you so committed?
FAIRLEY: Because we’re dying. I was diagnosed with stage three, triple negative. I did a double mastectomy, six rounds of aggressive chemo, and six weeks of radiation almost a year to the day of my diagnosis. They found five spots on my chest wall. My doctor at the time said, “Ricky, you’re now metastatic. You have two years to live, get your affairs in order.” I said, “I can’t really die right now.” I have a daughter at Dartmouth. I’ve gotta get her through school. I went on Google and at the time in back then 10 years ago there were three pages of “You’re gonna die.” When I found the Triple Negative Breast Cancer Foundation, I reached out to them, and they hooked me up with one of about five doctors in the country that were researching triple negative breast cancer. She put me on some experimental drugs that weren’t approved yet for triple negative. I’m here 10 years later. I know that God left me here to do this work. I’ve met too many women who didn’t have the experience that I had and have died or are dying. I got my daughter through college. I remember sitting at graduation at Dartmouth, with my mom and my friends and my sister is thinking, God, we made it to graduation, now I have help other women.
Black women have a 41% higher mortality rate than white women. Black women with breast cancer have a 39% higher recurrence rate of breast cancer than white women. The worst facts to me are the ones for young women. Black women under 30 get breast cancer at four times the rate of white women. Black women under the age of 35 get breast cancer twice the rate of white women. The earlier numbers are well before they would get that first mammogram at age 40. It’s just outrageous to me because they don’t even know about it. The words health and equity are not a thing for me. It doesn’t exist. It’s health inequity. We’re not going to get to health equity until every healthcare professional practice the golden rule–treat others as you want to be treated. I challenge our patients to ask, “Would you give this treatment plan to yourself, your mom, grandma, daughter, or auntie?”
We must get to that level of care and that’s across every industry. If everybody practiced the golden rule, we would have equity and inclusion. We would have people at the table having good conversations about having diverse representation in our workforce, in our lives, across everything.
WEAVER: Why are Black women under 35, the largest population in our workplace, more likely to get higher rates of cancer and higher rates of triple negative?
FAIRLEY: If you look back in history, at all the drugs that we have on the market right now, there were no black women in those clinical trials or in the research study. There’s a premise practiced by doctors right now that once you have cancer, getting a lumpectomy, taking a lump of where the cancer is out and doing radiation is equivalent to getting a double mastectomy, which is what I had. That research was done in Sweden. Black women weren’t involved in those conversations in those studies. It doesn’t work for us. We need more Black oncologists and Black doctors. We’re trying to work on that with our internship program. I sit on the board of the Center for Healthcare Innovation and they’re having a diversity hiring fair to help bring more Black employees into science and drug companies.
We started our movement “When We Tri(al).” We interviewed about 300 Black Breasties last year. We tried to understand what their fear was of clinical trials and research. We know about the earned medical mistrust with Henrietta Lacks, the syphilis study and the Black community being abused by research historically. I knew there was something deeper than that. First, they’re not asked by their doctors. Secondly, they’re afraid. The fear of the unknown and having a lot of misconceptions and bad and wrong information made them shy away from clinical trials. We decided that we need to educate them and our Breasties club members. The members have unconditional love and trust. We’re breaking the information down in elementary terms with real examples to help Black women understand how the science works to make them feel better about it. That’s the purpose of our movement.
We’re trying to force these conversations into the Black families by using young women to reach out to young women. We have an H.B.C.U. internship program. We have a radio campaign on Radio One to young women so that they can have these conversations and get people to fight these barriers and build trust.
WEAVER: How do you advise a Black woman in the workplace to share that she has breast cancer and to ask for the support she needs?
FAIRLEY: The line I use is “no one fights alone.” When you have breast cancer, you cannot do it alone and you must rely on people. You don’t have to be embarrassed about being sick. We have a lot of conversations with Breasties explaining it’s okay to ask for help.
I was never alone for a year. My friends showed up from every chapter of my life. When you know someone’s in need, just show up. Don’t even ask how can I help you? I started a club with them called SMAD (Sisters Making a Difference).
WEAVER: Let’s say I’m a white male supervisor. What are the things that I can do to provide support?
FAIRLEY: Use cultural humility. It’s the golden rule. It’s looking at how you’re going to make somebody feel and how they’re going to walk away from that conversation. And how would you feel when you walked away from that conversation?
Working in corporate America for 30 years, I was very often the only Black person, the only woman in the room surrounded by white males. I never gave them a pass or let them get away with stuff. I got to the point where I can’t let people away with what they said. Now I’m doing that with pharma. I do believe in our breast cancer space the pharmaceutical companies are stepping up to the plate. They’re seeing where they’ve gone wrong with Black women. They’re seeing us dying and I’ve forced the conversation about Black women having breast cancer. It’s a different disease that warrants a different attention. I’m getting a great response to that. It’s not underserved. It’s unsupported. With breast cancer you must stand up and ask the doctor for that clinical trial and ask for the care you deserve.
WEAVER: How important is the mental mindset in this battle?
FAIRLEY: “No” is never the answer. It’s always “How?” I don’t take “no” for an answer and I don’t say no. There’s always a way to get what you want. You just must figure it out how to get what you want and to get it done.
WEAVER: What do you want people to say about you when you’re not in the room?
FAIRLEY: First, she knows her stuff. Second, she does excellent work. Third, she’s very passionate about what she does. Fourth, I get shit done. I’m always going to solve the problem in a creative different way.