Advocating for Diverse Representation in Clinical Trials with Ricki Fairley

Clinical trials test the safety and benefits of new treatments as well as new combinations (or new doses) of standard treatments. They can also study other parts of care including risk reduction, diagnosis and screening. People volunteer to take part in clinical trials and those who join help further the knowledge base that helps improve breast cancer care. Here today to share the importance of having a wide range of women represented in these clinical trials is Ricki Fairley.

About Ricki

As a Stage 3A Triple Negative Breast Cancer Survivor/Thriver, Ricki’s personal purpose, passion, mission, ministry and blessing is to bring focus, attention, research and action to eradicating Black Breast Cancer, and supporting and coaching what she calls her “Breasties” through their breast cancer experience. Ricki is an award-winning seasoned marketing veteran that has transformed her strategic acumen into breast cancer advocacy. Ricki recently co-founded Touch, The Black Breast Cancer Alliance to address Black Breast Cancer as a unique and special disease state, with the overall goal of reducing the mortality rate for Black women. Ricki founded and serves as co-host for “The Doctor Is In,” a weekly live web series on the BlackDoctor.org Facebook page. 

She is a founding member of #BlackDataMatters, in partnership with Ciitizen  to encourage and elevate the importance of Black Women participating in clinical trial research. She serves on the Board of Trustees for the Triple Negative Breast Cancer Foundation where she spearheads the Marketing Committee and directs multicultural outreach. She is a board member for the Center for Healthcare Innovation, a non-profit research and educational institute making healthcare more equitable. She also serves as an Ambassador and Advisor for the Live Humanly Campaign and works with companies to provide the patient advocate voice for breast cancer drug development. She serves on the National Accreditation Program for Breast Centers (NAPBC) Advocacy and Outreach Committee.  She writes regularly for BlackDoctor.org, Black Health Matters, the Cincinnati Herald and the Black Press. 

Transcript

Adam (00:46):

Clinical trials test the safety and benefits of new treatments, as well as new combinations or new doses of standard treatments. They can also study other parts of care, including risk reduction, diagnosis, and screening people volunteer to take part in clinical trials and those who join help further the knowledge base that helps improve breast cancer care here today to share the importance of having a wide range of women represented in these clinical trials is Ricki. Ricki welcome to the show.

Ricki (01:17):

Thank you for having me. I’m so excited, Adam. This is one of my favorite topics.

Adam (01:21):

Well, I’m excited to talk to you and let’s start. I would love to hear about your breast cancer journey and what has fueled your passion for bringing attention to eradicating breast cancer specifically through clinical trials?

Ricki (01:33):

So my, I am a nine-year survivor of triple-negative breast cancer. I had stage three triple-negative, and I did the typical therapy. I then they’ll affect me, did a lot of chemo, radiation, and then a year to the day, almost it came back as triple-negative. Does I had five spots on my chest wall. My doctor gave me two years to live and to get your affairs in order. And I said, no, no, you don’t understand. I have a daughter at Dartmouth. I have to pay for tuition. So me, you and God need to work this out. What have you got from me? So I went back on chemo and didn’t, didn’t work more chemo at the time. It wasn’t a trial, but it was an experimental drug for triple negative. So it was just kind of been approved for triple negative.

Ricki (02:12):

And then I had surgery to put in my implants and the cancer was gone. We don’t know what happened, but God had another plan for me. And I’m still here nine years later and all is good. And I know that God left me here to do this work, to be an advocate. And I’ve really been an advocate ever since. So I’ve been on the board of the triple negative breast cancer foundation, really, since right after I got well. And and I’ve done advocacy for a bunch of pharma companies for whatever. And then I recently started my own foundation called touch the black breast cancer Alliance, because I want the industry to focus on black breast cancer. And what do I mean by that? Black breast cancer is a different disease. Why black women are dying at a 42% higher rate than white women, black women under 35 get breast cancer at twice the rate die.

Ricki (03:01):

At three times, the rate black women have a 39% higher chance of recurrence. 21% of black women don’t make it to five years versus 8% of white women. And I could go on and on with more stats. Wow. We don’t know why we don’t know why. And I really believe that our physiology is different. We get triple negative breast cancer, which is the, you know, the worst breast cancer, which is what I had at twice. The rate 2.3 times, the rate of white women. And we don’t really have the science to understand it. And why don’t we have the science is because black women don’t participate in clinical trials and the numbers are all over the place, but there’s somewhere between three, I’ve heard 3% participation, 5%, maybe even 7%. There are actually two new triple negative drugs for metastatic them just come out in the last year or two. And they both had higher levels of participation. And thank God for that because of the numbers of black women getting triple negative. So they’ve done a better job at recruiting women, but overall, the industry is not doing well at recruiting black women.

Adam (04:04):

So I’m curious, like why do you think that is like, what is the, what’s the struggle with recruiting black women to clinical trials?

Ricki (04:11):

So there are a lot of historical reasons. I’m sure you’ve heard of Henrietta Lacks and similar stories and all the bad history that black people have had with research, right? So that’s sort of in people’s minds, but you know, it’s really more in the minds of older black people, not younger. But they’re not making the headway with younger ones either. So it’s not only that. Also I get a lot of fear of the placebo drug. I’m going to get the placebo drug, I’m going to drink water and I’m going to die. And so there’s a lack of understanding of exactly how a trial works. That really, you only get, you get standard of care. So you’re not going to get nothing, right. A lack of education is part of it, but I actually, Adam, believe it’s deeper than that. I really believe that, that we haven’t uncovered the right messaging.

Ricki (04:52):

And I am not a doctor. I am not a scientist, I’m a marketing person. And so I’ve spent my entire career convincing people to buy products they probably don’t need to buy, like Coca Cola. You know, it gives them diabetes and obesity. So I understand how to message my 30-plus year career, you know, trying to figure out how to convince consumers, to think a different way, but have a different way. And I don’t think the industry has cracked that nut, that we don’t really understand the, that, you know, clearly there’s mistrust, there’s lack of education. And also there’s all the kind of social determinants of health, like transportation, you know, access to healthcare, all those things. But I believe there’s an emotional reason that we have not uncovered yet that we need to figure out how to talk to her, who should talk to her, where to talk to her and what are the exact words we need to tell her to motivate her to do this work. And I’m, I’m actually in the process. I just got funding to do a research project to that effect and to really understand her psyche, understand what’s going to make her tick and what’s going to change her perspective and, and get her to participate. So I’m really, really to feel this research. We’re going to feel that in January and hopefully have this like secret answer by it by mid year, next year.

Speaker 3 (06:04):

I love that. That’s so exciting. I want to hear more about that. Yeah, that’s great.

Ricki (06:09):

I’m so excited to do this work and you know, I kind of use the example of Harriet Tubman. So if you saw the movie Harriet, have you seen it? Not yet. No, you have to watch it. It’s really great. It’s but the way they depict her is to me, the epitome of a black woman’s psyche. So she’s this very strong woman. She’s she’s very spiritually connected. She gets these visions from God and passes out and then wakes up and like knows where to go. I could see it kind of defines the path of where to go. And she basically says, I’m going to take, put my life at risk for you. And I’m going to take you from the slavery situation to freedom, being chased by guns and dogs and all these bad things. But don’t challenge me. Don’t question me, don’t criticize anything I’m doing, do everything my way, because I have a gun and I will shoot you.

Ricki (06:58):

And, and, and she basically is, you know, powerful woman, but she has a path. She has a program and she’s wants to stay in control. So if you’re going to, but she’s going to put her life at risk. As long as you follow her rules, right? That’s the black woman in my house. I will give you my last piece of chicken. I will pay your rent before I pay my mortgage. I will do whatever for you, because I love you. But follow my rules when you live in my house. And so totally in control, she’s a helicopter mom, a helicopter grandma. And I am one. I know a lot of them. So when you put her in a situation of a clinical trial, you take away all that control. You take away all that, that power that she has in her body and her inner psyche.

Ricki (07:41):

And you put her in this very vulnerable position where you put her in her car and take her out of her house, her neighborhood driver, across town to an a doctor’s office where she sees no one that looks like her Watson to the sterile environment, where they’re all, you know, white people and scientists and whatever doctors that she doesn’t have any familiarity with. And then you want to stick a needle in her arm of a drug. You don’t know what’s going to happen no way. So you’ve taken her out of this, this powerful position of who she is and how she defines herself and making her totally vulnerable. And she’s never going to work that way. So what I really want to uncover is how do I change the messaging that we tell that we’re telling her so that we can give her the power in that situation? So instead of her feeling vulnerable, she can feel powerful. She can feel in control of not only her own health, but the health of her family, the health of other people. And my kind of bandaid kind of messaging right now is do it for your daughter.

Ricki (08:37):

Anything for everybody that she loves, but she comes last. So to somebody that you care about, you know, and, but we’ll see, I’m anxious to see what this answer is. And I’m, I’m, I’m hoping that what we uncover will change the ecosystem and how we, we really, all of pharma talks to her to recruit her. Yeah. Or we’re definitely

Adam (08:56):

Going to have you back on the show to share that messaging with us, for sure. That sounds amazing. Just a couple more questions about clinical trials. So tell me, talk a little bit about why you view clinical trials as, so,

Ricki (09:09):

Because we don’t have the science, the drugs aren’t working right now, but it’s not working. I mean, why are black women dying? You tell me, why are they dying? They’ve got that. We’ve got the same drugs and that have been tested on white women. And, but we’re dying. And, and you can, and you can blame it on psychosocial factors, access to healthcare, not good insurance, all those things. But I think those are excuses and those are things we could throw money at, but she’s still dying. You know, I had a friend die last week from triple negative, 43 years old has a 23, 20 year old daughter. She had triple negative. She went through all the therapy, the same therapy that I went through. Right. You know, no evidence of disease. It came back nine months later and she lasted 18 months. Why then she took the same drugs I took. So I don’t think we know, I don’t understand the science. And so it’s so important for us to do this research and understand the physiology and the biology of black women. So we can find drugs or figure out how to tweak the drugs or make the process work better to work on our bodies. Yeah.

Adam (10:14):

It’s so important that women of color are represented in clinical trials. Right. So we can understand how these drugs can better help them.

Ricki (10:21):

I want to figure it out. I want people to stop diamond. I don’t want anybody to die of breast cancer, but at least I want mortality rate parody. Yeah. Black women should not die at a 42% higher rate. Yeah. And young black women shouldn’t die at three times. The rate and black women are getting triple negative at stage three and stage four. I mean, the numbers too are ridiculous of women, black women who get Denovo metastatic breast cancer. I have two precious grand babies, a third one on the way. And I don’t want them to ever speak the words, breast cancer. And they’re like, yeah, that’s right. That’s right. So that’s why I would do this work there, my purpose.

Adam (10:58):

So, so Ricki how can our listeners help break down some of these barriers to get rid of medical mistrust or barriers to clinical trials?

Ricki (11:08):

You know, it’s really just doing this understanding. I mean, I think right now, there’s not much we can do. And I feel I’m feeling like if we can understand that have a messaging works and how we can make it work better, that will help a lot. But I think, you know, if you’re in a position where you can educate about clinical trials and you can help people understand it better and understand the science, do that, teach them when you, when you talk to a patient, also talk to the patient in a way that you can empower them and make them feel powerful by the, not by the knowledge that you’re giving them, right. Try to reduce the vulnerability. And that comes from the nurse navigators, from the doctors that they interact with from really the whole ecosystem. If you, if you’re in a position where you can help educate about research, take advantage of that and really help somebody understand it better. If you can.

Adam (11:59):

I love that. Well, Ricki, this has been fantastic. Do you have any final thoughts or words you’d liked for our,

Ricki (12:05):

You know, we have to do this work. We have to save the world. And, and I’m, you know, I fight like a girl every day to try to figure this out. And I think everybody else should too. And I hope that we can, you know, make a difference and, and help people do the right thing here and do this better. So look for good stuff. Look, I’ll come back to you. I’ll come back to, to Chris. And, you know, actually the research that we’re working on, you know, Komen is one of my partners in working this on working on this. So we have a great team of brilliant people, you know, Coleman Krista Smith from Coleman and breast cancer.org and Morehouse school of medicine and the center for healthcare innovation. We’re all doing this together and citizen and company called citizens. So we have a really great collaborative team of brainiacs that are going to solve this problem. We’re going to figure it out

Adam (12:50):

Well, Ricki, thank you for paving the way on this. It’s so important and really appreciate the work that you’re doing. And thank you for joining me

Ricki (12:57):

Today. Thank you so much for having me and I’ll be back. We’ll figure it out. We’ll have the answer and we’ll save the world.

Sponsors

This episode is brought to you by Amgen Oncology.