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Black Women and Breast Cancer

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Published on September 15, 2021

Breast Cancer Survivor Raises Awareness

Ricki Fairley, a triple-negative breast cancer survivor and the co-founder of Touch, The Black Breast Cancer Alliance, speaks with Patient Power co-founder Andrew Schorr about the alarming statistics that Black women with breast cancer face and how clinical trials and spreading information can save lives.


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Transcript | Black Women and Breast Cancer

Andrew Schorr:
Hello and welcome to Patient Power. I'm Andrew Schorr in San Diego. Joining me from Annapolis, Maryland is Ricki Fairley. Ricki is a powerful leader in the breast cancer community, and specifically that of Black women affected by breast cancer. Ricki, thanks for being with us.

Ricki Fairley:
Thanks for having me. Thanks for having me. I'm so glad to be here with you.

Andrew Schorr:
Thank you. So, Ricki, we should say that you are a triple-negative breast cancer survivor.

Ricki Fairley:
Yes, I am.

Andrew Schorr:
Any of us, I think, are survivors say, “If we survive what do we do with the rest of our life?” And you decided that you were going to use your skills in communication and marketing and empowerment, if you will, to really tackle what had been a tremendous problem, and remains it, among Black women with breast cancer. So first of all, do you think that's why you survived, to do what you do?

Ricki Fairley:
Oh, yeah. I know that God left me here to do this work. I had stage three triple-negative. I did all the stuff. Double mastectomy, six rounds of chemo, six weeks of radiation. A year to the day of my diagnosis, which is very typical of triple-negative, I had five spots on chest wall. My doctor told me I was metastatic and said, "Okay, get your affairs in order. You probably have two years." And I said, "No, no, no. You don't really understand. I have a daughter in college. I can't die right now you got to get me at least get my daughter through college. And so me, you, and God need to work this out. What can we do?" And I reached out, I went back on more chemo and after four months of chemo, my cancer was gone and I had no other disease and I'm still here. That was almost 10 years ago. It'll be 10 years in October. So I know I'm a miracle. I know I'm so blessed to be here and I know God left me here to do this work.

Andrew Schorr:
But let's talk about the work. The statistics for Black women with breast cancer are bad. So help us understand how bad it is.

Statistics on Breast Cancer in Black Women

Ricki Fairley:
It's really bad. It's really bad, Andrew. So, the mortality rate for Black women is 42% higher than white women. A new statistic just came out from JAMA Oncology in January that Black women with breast cancer have a 71% higher risk of death. Black women have a 39% higher recurrence rate than white women. Black women under 35 get breast cancer at twice the rate, die at three times the rate. Black women are 2.3 times more likely to get triple-negative breast cancer, which has not very many treatment options until yesterday, till recently. Which is really great news. And you know, the highest mortality rate for breast cancer. So we get the bad disease and we don't survive it. And there's a lot of reasons why.

Andrew Schorr:
Well, let's talk about that. First of all, you mentioned triple-negative. Triple-negative, where there hadn't been progress for many years, lately and even right now there is progress and that comes out of clinical trials.

Ricki Fairley:
Yes.

Andrew Schorr:
So that's been one of the reasons for mortality, right? Is that Black women either don't know about trials, are hesitant about trials, don't have the resources to be in a trial, it’s at a distance, afraid of trial. Talk about that and sort of the disconnect where progress can be made, but it's not happening so much for Black women.

Why Is it Important to Spread Information About Clinical Trials?

Ricki Fairley:
So right now the participation rate for Black women in clinical trials is 3%. That may as well be zero, right? So everybody's failing despite a lot of resources and money being put into it by PhRMA, it's not working. It’s not working. And you know, I'm a marketing person, I'm not a scientist, I'm not a doctor. But I spent my 30-year marketing career talking about messaging and how to messaging, how to communicate with people in a way that's going to be effective. And the messaging that we have isn't working. It's not working. So, we need to kind of change the game on how we talk to Black women. But it's all of that stuff that you mentioned. It's fear, it's all the bad science. I mean the historically bad experiences with Black people and science. It's access to care. It's the social determinants of health. It's all of those things that preclude us.

It's also the fact that a lot of doctors don't ask us to participate in trials; 24% of Black women will say, well, they were never asked to participate in a trial. So, it's all about racial bias and all the bad stuff, all the bad discrepancy. But there's a huge fear by Black women because of the bad history. And if you look at all of like the technical barriers, no one's ever looked at the emotional barriers. And so that's what we've been doing at TOUCH, is really kind of digging into what are the emotional barriers that are keeping Black women from understanding what a trial is and how to engage in it. And there's a lot of stuff there. And we just completed the qual study of a huge research project that we're doing right in the middle of a quant study right now.

But the qualitative study showed us that Black women are getting incorrect information from other breasties. So we don't trust the medical system. We don't trust our doctors. We don't trust the hospitals. We don't trust the pharma companies, right? But who do we trust? We trust each other. So I often will get a call. "Okay. Ricki, the doctor told me to do X-Y-Z therapy, but what do you think?" And I'll have to say, "I'm not a doctor, but I can give you three examples of who did that chemo or who had that study or who did whatever." So that's the trusted voice.

And so breasties are saying things like don't do the clinical trial you're going to get the sugar pill and die. And I knew there was a lack of understanding of a trial but it's really, really deep. It's really, really deep. And so when you hear that from a breastie who you trust, you believe it. So we're trying to change the game on that. And now put together like a movement. We're trying to start a movement on educating breasties to give the right information to other breasties, to arm them with the right information. And what I… I interviewed, recently interviewed 48 women and got like, crazy messaging. And what I learned though, that the good news is, is that on a scale of one to five, if one, meaning I'll never do a trial to five meaning sign me up today. I can get women from a one to at least a four and even a five in five minutes with the right information coming from me, the credible voice of a breastie.

And it's basic things like, “You know that chemo that you took or that you're taking right now? In your body, it's a clinical trial.” You don't know if it's going to work. When I took TAC [docetaxel (Taxotere), doxorubicin hydrochloride (Adriamycin), and cyclophosphamide] and Carboplatin (paraplatin) I had no idea what was going to work for me. So, guess what? It was a clinical trial in my own body. So, you're doing one right now, right? Or “You know that Advil that you took for a headache last week? Well guess what? It was in a clinical trial. That Tylenol that you gave your baby for a fever was in a clinical trial.”

And when you start to unpack that and say, "Guess what? If a doctor gave you a sugar pill, he'd be under the jail." So all the bad stuff that happened historically actually led to laws that are in place to protect you. So, when you break it down and start to give them information that they don't have, and have never heard of before, they change their perception, and they change their behavior. Even stuff, you know, Black women are these like bad ass powerhouses, we take on the world, we take care of everybody. I will give you my last piece of chicken. I will walk and buy you a car, and we'll take care of you because someone told me to love you if I don't love you myself, right? And when you take away that power from her and make her vulnerable, she's not going to engage.

So we're trying to figure out how to teach her how to understand why clinical trials are powerful. Like do it for your daughter, do it for your granddaughter, do it for your family. If you're not going to do it for yourself do it for somebody else that you love, right? And make an impact, not only for your own health, but for your community. So, all that messaging now we're testing in a quant study to help us figure out what's the best way to deliver these messages to Black women and to Black breasties. Kind of, we're building this choir. What I call a choir of Black breasties. So, we're going to be our voices in the community and start to help us start this movement about getting it right and getting and understanding where it needs to be.

Andrew Schorr:
Wow. Well, I am so excited for your enthusiasm and the messaging. I'm not in the Black community and I'm certainly not a Black woman, but it seems like doing it for your family is an important one. So you have TOUCH, the Black Breast Cancer Alliance, and you're trying to pull all this together. Do you feel that the collaboration is starting to happen, and these messages can go out through your organization to other organizations and even like Black churches where people have community?

How Is Your Organization Raising Awareness?

Ricki Fairley:
Yeah. So, we literally are at the point where we are testing messaging and developing the messaging now. We have a great Black advertising agency called Ten35, and they are a bunch of brainiacs who are helping us formulate what the words need to be, how to say it. And then we're going to basically do a community ground game. And we've got some great partners. We're working with breastcancer.org, with Morehouse School of Medicine, with the Center for Healthcare Innovation, and with Citizen, and Comen. And we’re going to use all of these tentacles into the community, but it's going to be a ground game. It's going to be a lot of digital communication, but also going into the churches, to hair salons, to all the Black organizations, to the community organizations, to the NAACP, the National Council of Negro Women, the Black Women's Health Imperative. We're going to basically by any means necessary reach out into the community where people live, work, play, and pray. That's our mantra.

So, you know, I worked at Coke and our mantra at Coke was "We want Coke to be within arm’s reach of the consumer." So what does that mean? You can go anywhere and get a Coke. In your refrigerator, at the gas station, in the vending machine, at the supermarket, at the big port store, whatever. So I want our message to be within arm's reach. I want people to know about it and know we need to talk about clinical trials at the kitchen table, before your shift, before you need one. We need to bring it home. And so, a lot of our outreach has going to be with young Black women because they not only need to have their own self, know how to self-examines as part of their own purpose, but also to be the voice into the family. "Hey grandma, did you get your mammogram? Hey mom." And so a lot of our education is going to be with young people to help them be a voice for their families.

Andrew Schorr:
Wow. Ricki Fairley you're a dynamo.

Ricki Fairley:
I'm crazy. I know.

Andrew Schorr:
We know why you survived to do this and as you said about Coca-Cola, you know growing up, it was on the candy store, it was on the soda fountain. If you went to the beach, it was on the beach towels, on the race car, everywhere, with positive feelings. And I think that's what we need about clinical trials and for Black women, for sure, to turn it around. And I want to thank you for your leadership in working on that. Ricki, we’ll speak again. And is there a website that you want to mention that people could go to?

Ricki Fairley:
Yeah. So, our website, it's the word touch, T-O-U-C-H B-B-C-A.org. Right, Black Breast Cancer Alliance.org. So touchbbca.org. Also, we have a web series every Wednesday night at 6pm Eastern Time on the Blackdoctor.org Facebook page. It's called “The Doctor Is In.” And so, we're on talking about breast cancer every day. Today, we're talking about inflammatory breast cancer.

Andrew Schorr:
Thank you for all you do. We'll talk again. I'm Andrew Schorr with Ricki Fairley, remember knowledge and being a powerful patient can get the best care. Thank you so much for being with us.

Ricki Fairley:
Thank you so much. Thank you so much. You be blessed.

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