00:00:13 Asha Dahya

Hello friends! Welcome to another episode of the RePRO Film podcast. I’m your host, Asha Dahya, thrilled to be back in conversation and community with you all. If you’re listening to the RePRO Film podcast for the first time – welcome! And you should know that this podcast series is part of our free monthly newsletter called the Repro Periodical, which you can subscribe to at reprofilm.org. Each month we center our content around a repro health and justice theme, and since October is Breast Cancer Awareness month, it seemed like an obvious choice. 

Many of us are familiar with the numerous pink-colored campaigns that dominate throughout October, raising awareness about this issue that, according to the CDC, is the second most common cancer among women in the United States. 

But the data goes much deeper than that, and we wanted to go beyond the various campaigns and images. One of our core values at RePRO Film is to lift up intersectional issues through storytelling and advocacy. There is a distinct intersectionality that often gets buried in headlines and social media posts when it comes to breast cancer, so this is something I wanted to dive into on this month’s episode. 

Today I have the pleasure of speaking with a powerful woman, a survivor, a mom, a grandmother, and a thriving leader in Ricki Fairley. She is the CEO and co-founder of TOUCH, the Black Breast Cancer Alliance. Touch drives the collaborative efforts of patients, survivors, advocates, advocacy organizations, health care professionals, researchers and pharmaceutical companies to work collectively, with accountability, toward the common goal of eradicating Black Breast Cancer. 

Ricki co-founded TOUCH to address Black Breast Cancer as a unique and special disease state, with the overall goal of reducing the mortality rate for Black women. According to the data, Black women are 41% more likely to die of breast cancer than white women. That is a startling number, one which is not talked about enough in the larger mainstream conversation about breast cancer awareness. 

As a Triple Negative Breast Cancer Survivor/Thriver, Ricki’s purpose is to bring focus, attention, research, science, and action to eradicating Black Breast Cancer, and supporting and coaching what she calls her “Breasties” through their breast cancer experience.

Ricki is a founding member of #BlackDataMatters, in partnership with Citizen, The Center for Health Care Innovation, and Morehouse School of Medicine to encourage and elevate the importance of Black Women participating in clinical trial research. In January 2022, she started the When We Tri(al) Movement to change the game for Black women participating in clinical trials to improve outcomes for Black women with breast cancer.

I had no idea that Breast Cancer impacts Black women differently, I’m sure I’m not alone in this. I’m so thankful to learn from Ricki and become familiar with what TOUCH are doing. I’m also thankful for the opportunity RePRO Film has to share this URGENT message with our community during Breast Cancer Awareness month. Take a listen!

 

00:03:24 Asha Dahya

Ricki Fairley, thank you so much for joining me on the Repro film podcast and welcome! It’s great to speak with you.

 

00:03:30 Ricki Fairley

I’m so happy to be here with you and so excited.

 

00:03:32 Asha Dahya

Where did it all begin? Tell me about your involvement with TOUCH and what made you want to launch this organization?

 

00:03:37 Ricki Fairley

First of all, we call it “Breast Cancer Action” month. So let me tell you my story. That’s kind of how I got to TOUCH because it’s my god-job. I was diagnosed with stage 3A, triple negative breast cancer and I can explain that later. But it’s the worst one has the highest mortality rate. It’s the most aggressive and black women get it at three times the rate of white women, and we don’t really know what we’re getting it younger and at later stages and it’s a nasty beast. So I had a double mastectomy. I did 6 rounds of standard of care, chemo, nasty, aggressive chemo. Then I did six weeks of radiation and then my doctor said OK, Ricki, you have no evidence of disease come back in two months for a scan.

So I went back two months later and was exactly a year to the day of my first diagnosis and they found five spots on my chest wall. So my doctor said, OK, Ricki, you are now metastatic. You have two years to live, get your affairs in order. And I said, well, I can’t really die right now. I just can’t. I have a daughter at Dartmouth. I have to pay tuition. So maybe you and guidance, but we gotta work this drug. What do you got for me? And I realized my doc didn’t really know a lot about triple negative breast cancer because nobody did. And I went to the doctor. And on the third page of Doctor Google, I found the triple negative Breast Cancer Foundation, which was about four or five years old at the time I called them, and they found me a doctor, probably one of about 5 in the country that we’re actually doing research on triple negative breast cancer.

So this amazing Doctor Ruth O’Regan, and she put me on some drugs that were then experimental for for triple negative breast cancer. So I did a lot more chemo and I didn’t die.

It’s been 12 years. Wow. So I’m very blessed. I know that I’m a miracle, but it’s my God job, so I know God left me here to do this work so really I went to work right after I got better and I’ve been on the board of the triple negative Breast Cancer Foundation ever since then. But I started just doing advocacy work and trying to figure out, OK, what’s going on in this world of advocacy. And I’m a marketing person. I tried. I worked at coke. I worked at the this guy. Did you know brand management, marketing stuff? And so I’m like trying to put together the PowerPoint presentation of what is right so I did and I went to our big breast cancer conference. It’s called San Antonio Breast Cancer Conference a few years ago. And I started talking to the pharmaceutical companies about what I started labeling black breast cancer. It’s a thing. It’s different. We have a different disease state. We have different everything about it. And we have different outcomes. And frankly, the data says now that if you’re a black woman, black women have a higher mortality rate at any stage of breast cancer when they get it any age that they are any subtype. Across the board, so we’re going to die. Before a white woman dies with any breast cancer circumstance, even stage 0 with the lowest five year mortality rate of anybody over, no matter what stage or some type of breast cancer you have, which is crazy, right?

We have a 1% higher mortality rate. Think about that for every 100 white women who die of breast cancer, 141 black women die. And saying that we have a 39% higher recurrence rate.

So we get it back faster, right? And then the the one I hit the most is black women under the age of 35 get breast cancer at twice the rate and die at three times the rate. Unacceptable, right? Like, so we have a different disease. So I started painting this picture of black breast cancer and and and even the advocacy groups kind of thought maybe what do you mean black breast? It’s the thing like, why is.

Why are why are these stats happening? Why are we? Why don’t we have this data? Why is it what? Why we? Why are we painting this picture? And so so I started think talking about it and saying something’s gotta be wrong with the science.

Right, like we’re all doing stuff. We’re taking the same drugs, we’re doing the stuff, but the drugs aren’t working for us. We’re dying. So something’s gotta be wrong. Pharma with your science.

Did you test it on our bodies? Well, no, they didn’t. And I went back and looked in history for some of the main drugs that we used and there were no black women in the clinical trials, really.

From like you know, 20 years ago, 10 years ago, whatever. And then I started looking at, OK, So what FDA, what are you doing about this? And it turns out.

That there’s only 3% participation in clinical trials, according to black women, according to the FDA. And when I push on that number, OK, 3% of what like what are you talking about here and can’t answer the question.

 

00:08:15 Asha Dahya

What’s the overall number?

 

00:08:16 Ricki Fairley

What’s the big number like? How many women? What is 3% representing the number of women, right, they can’t. So there’s so much unknown about black women and the science and the data, and it’s all funky. And so I started just screaming.

People saying your baby is ugly would help me fix it. What are you doing? And so we did a big research study two years ago and we found I wanted to understand, like, what’s in the mind of a of a a black breasting. What’s in your? Why are you not participating in clinical trial? Why are we not in? And what we learned was?

First of all, doctors do not invite black women to clinical trials.

For whatever illicit bias, racism, whatever it is, they don’t invite us. Oh, you’re a single mom. You’re free. Kids not going to show up whatever. But really, more importantly, from from an emotional perspective. Black women are afraid of the unknown. They fear the unknown because no one ever explained to them what a clinical trial is and how the.

Science works, so we heard was I’m going to get the sugar pill and die. And look, wait a minute. Hold on. There’s no sugar pill in Cancer Research. You’re not going to get a sugar pill. Well, how do you know that? I said, you know that Advil you took last week? It was in a clinical trial. You know that Tylenol you gave your baby was in a clinical child. You know that heart medicine I give my dog. It was in a clinical trial.

When you start to explain it. Explain the science in words. They can spell. They get it like they don’t really understand that you’re going to get standard of care. So you’re going to get a drug that’s already on the market, maybe not doing the best job, but it’s been tested right and nothing new on top of it or something new and Instead of it you’re going to get a drug, and frankly, in a clinical trial, you’re going to get a better quality of care because there’s going to be more people poking you and prodding you and scanning, you’re gonna get more scans if you go on chemo today and do a regular chemo tour of duty. You probably wouldn’t get a scan to see if it’s working for three months. If you’re in a trial, they’re canning you constantly because they want to see how the drug is doing and frankly, if you have a progression or your disease gets worse, they’ll change you instantly and you’ll be done and you’ll get more supervision and we know the data shows that we have better outcomes. People on trials have better outcomes.

 

00:10:31 Asha Dahya

Really. Wow.

 

00:10:33 Ricki Fairley

And that’s been proven. So if you’re a black woman under 30 under 40 and you get triple negative breast cancer, your best treatment plan as a trial as a clinical trial because you’re getting the best side, you’re getting the drugs that are going to be available tomorrow, today, and you’re going to get a better standard of care. And it’s where you need to be. So.

We took all the learning that we got from this, from this research, and we built one week trial.

So if you go to our website whenwetrial.org, you’ll see that we took women, Breasties the voice of trust and had them explain or us explain clinical trials, as in the science of it, to other breasties we are the voice of trust. You know that this Breastie thing is this club that you don’t want to be in if you don’t have to. But once, and it’s like unconditional love and trust.

So we have the Breasties explained to other breasties how a trial works and what standard of care is and what the fundamentals of science are. Sign me up. I don’t wanna die. We launched in about a year and a half ago. We’ve now signed up, almost 14,000 black women for clinical trial portal.

 

00:11:37 Asha Dahya

That’s amazing.

 

00:11:38 Ricki Fairley

But we also hit the road, so we have this video library and all this video great content on our website explaining trials. But we go every day somewhere where black women live, work, play, pray and we’re in community, we’re talking to women, not in health fairs, because that’s preaching to the choir. we’re going to hair shows and music festivals. And we went to the, you know, the beach and Martha Center went on the budget. Black people were there. And the essence festival, like we do all these things where people are in the community, we partner with, got to the divine 9 and the links incorporated in Jack and Jill. All the black women’s organizations where we can find them when they’re having fun and hanging out and we can talk to them about this Science and sort of kept them off guard and they’re interested. We went to a black women’s tech event. We went to a black women writers event. So all these things are sort of in the community that connect, but in a way that they can hear us, I think by the end of October, we will have done according to my daughter, we will have done 60 events and 52 weeks. But we find that we have to connect, we have to hold their hand. We have to look in them, look them in the eye. And they get it. And they’re signing up, which is the most important thing is they’re signing up, they’re wanting to participate in the science, and it’s working. So we’re going to keep doing it because it’s not enough. We’re going to go down fighting to get women into the science and hopefully get better drugs. That’s all we’re going to get them is to participate.

 

00:13:01 Asha Dahya

And just the listeners, Hayley is your daughter who works with you at Touch, correct?

 

00:13:05 Ricki Fairley

Yeah, she’s my boss. She’s 31. She’s probably been my boss for her whole life. You know, she took a turn off from Dartmouth and took care of me. She’s my chemo buddy. You know, she was afraid to be away. That we wouldn’t tell her what was going on. So she just came home. She was a teacher for eight years, elementary school teacher in inner city. And that’s really her passion. But now her teaching skills are what we do every day. What we use every day, we’re able to educate and empower women and equip them with the information they need to demand the care they deserve. I don’t think we’re going to get to HealthEquity until everybody in our ecosystem practices the golden rule. And what does that mean? What’s your mother taught you when you were two years? Ohh treat others as you wanna be treated and So what we do is we help black women demand that level of care. So when people come to me and patients come and say OK Ricki, the doctor said I should do this treatment plan I said will you go back to that doctor and say is that the treatment plan you would give your Mama your auntie. Your daughter. Because if it’s not good enough for your family, it’s not good enough for me. That’s what we do every day. We just teach women how to demand the care they deserve, to demand the the clinical trial to ask for our clinical trial and hope we give them the knowledge and the the power to be the CEO of their own health, especially on breast cancer, because what we’re finding with young women, so many women are getting sick and dying.

It’s because they go present with the lump and the doctor says Ohh. You’re too young for a mammogram. Come back in six months and we’ll talk to you then and six months are dead.

And so that’s why we teach people, know your bodies, know your normals. But if you do feel something abnormal, you can defend it to the doctor and say, wait a minute that wasn’t here last week, that wasn’t here a month ago. Give me a mammogram. Check me out. Give me a sonogram and demand the care they deserve. We also teach women to know their her story.

You know, sit down with your Mamas and your grandma’s on both sides, and your dads and your grandfather. Everybody should sit down at the kitchen table and we actually have a worksheet on our love of my girls website. We can go and sit down with your family and talk.

Bad health because you know, black families don’t talk about health until Uncle Pookie kids his leg amputated or grandma unit is in Hospice and like, well, how that has happened. We’re now finding so many connections between between prostate cancer and colon cancer and breast cancer that even with triple negative, I don’t have any genetic mutations.

00:15:34 Ricki Fairley

But we have a family history of three generations and I have told cancer on my dad’s side, so that contributed to my breast cancer. So my kids are at risk. We encourage them to get genetic testing. But but genetic testing Is really only about 5 to 10% of breast cancers, but still family history is so important. Because guess what? We’re now discovering genes in West Africa for triple negative breast cancer that we don’t test in the states that affecting black women.

So again, a lack of science so we’re really focused on solving the problem, you know solving the science.

 

00:16:06 Asha Dahya

Clearly the data the data exists and so there’s something you know, there’s the gap between knowing the data and having black women in the trial and like you said that you know they’re seeing these patterns, it’s recurring at faster rates than white women and black women under 35, which is so heartbreaking and shocking. We’ve talked a lot on the Repro film podcast about the disparities in the American healthcare system and the systemic racism and the history, and how do we change that. How is TOUCH working to not just raise awareness, but take action potentially change the status quo in the healthcare system to affect women?

 

00:16:45 Ricki Fairley

I know I’m a bad ass. I do a lot of good things, but I can’t change the mindset of a racist 50 year old white oncologist. But what I can do is teach black women how to care for themselves, to demand the care they deserve. We focus on saying, OK, challenge your doctor, fire your doctor. Even our research shows that patients bring up clinical trials to their doctors. They still walk away feeling ill equipped to make a decision because the doctor. Use words they can’t spell or didn’t explain it, or give them enough time to make them feel comfortable with the clinical trial. So that’s why we have to educate them and teach them what to ask for, how to ask the questions. And so that’s what we do. I feel like I can make a difference by teaching black women what to do. And the care that they need that they can ask for, you know and and challenge challenging the system, challenging doctors just don’t accept that the doctor’s giving you all the right information because they’re only human. I would say most doctors have good intentions, but there’s a lot of illicit bias. They don’t even realize that they’re hurting you.

I helped one of our drug company partners make a group of videos that illustrates a doctor patient interaction over screening was it’s a young woman that comes in with A and says I feel I feel something and come back in six months. We we shot it four different ways to demonstrate illustrate the illicit bias of this. Just kind of wrote it off and and was really just listen. I do it today. I’m really busy. I’ve got I haven’t had lunch yet, I mean. All those factors going to play in this doctor patient interaction, so that’s why we have to say hold on tell the doctor you need this is what you need. These are the questions you’re going to ask and be prepared. Go to the doctor with somebody. With a buddy. Don’t go by yourself. And we have a list of questions to ask and and we’ll we you know, I go on FaceTime with many patients. I’ve been thrown out of a few doctor’s offices.

 

00:18:37 Asha Dahya

But maybe you know you. It’s like we need to be more bold and bad ass like Ricki Fairley in these doctor’s offices and demanding “listen to me. I know my body. I am my own best advocate.”

 

00:18:47 Ricki Fairley

I know my body and if I know this wasn’t here before and I can talk about that. Because I’ve I’ve touched my breasts and felt them and looked at them in the mirror. And I know this was different, but I can validate my conversation a little better with the doctor, you know? And if I can say, you know, my 2 grandmothers have breast cancer. My aunt died of this. You know what I mean if I Can speak that. But we also try to get people to practice, you know.

Self-care health is your is part of your self-care. You know when you get your nails, check your breasts, make it part of your routine. You know you are the CEO of your own head. You have to figure out what that means, and moms are the CEO of their families health. And wives of the CEOs that their husbands help, unfortunately, you know, we have, as women have to do all the jobs. But you have to do the job.

 

00:19:35 Asha Dahya

And including our on ourselves.

 

00:19:36 Ricki Fairley

And doing your own and not putting yourself last. Whether they send airplanes, put the mask on yourself first. I also learned in my breast cancer experience that my piece is not negotiable. I know that my breast cancer came from stress. I had to do a lot of things to not only get the cancer out of my breasts and in my body. Anything that wasn’t bringing me joy, people, things, whatever had to go. So I was the breadwinner from my family. I was the rain maker from my ad agency that I was a partner in, so I was taking care of everybody, right. And I used to think about the 70 salaries I had to pay every two weeks with my agency and and was been to 30 years and that I had to take care of in my family. So I had a meeting with my nurse navigator early on in my cancer and she said, Ricki, you are so stressed out. You need to get the stress out of your life. I’m like, what do you mean, stress? Who has time for stress? Stress is for wimps. Like hop out. Like what am I gonna do? Not be the kid today. And I started yelling at her like I don’t want stress is like, how do I know I’m stressed. She said, well, how many times a day do you either think or say the word “asshole?”

And I never really said out loud, but in my head, that’s what I called a lot of people.  With adjectives, bad ones probably 100 times a day. That was the name I actually called my husband of 30 years and my business partner of 10 years. so when that became my filter for stress. And so if I haven’t either think or say the word, then you’re a cancer and you gotta go. So I divorced my husband of 30 years out. I quit my business owners of 10 years. I sold my big house in the suburbs in Atlanta and I moved to a little one bedroom condo on the beach. And I go paddle boarding every day that I can, but I changed everything about my life and even now I don’t drive and traffic. I don’t get in situations where I’m going to feel stressed cause I can feel stress at the cellular level. Now I know what it feels like, figured it out. I eliminate it from my life in every way that I can. And I’m an airport runner. I fly a lot. I used to be like the last person on the plane. Now I’m the first person on the plane. I would always like be running through security.

And now dance for security. I go get something to eat, sit at my computer. I watch a movie. Like maybe that’s also maybe getting older, but I really do try to not have Stress. I work at that. I work at peace. You have to want it. Fire it and work at it. Because, well, it’s crazy. You know, you never put your cell phone down.

 

00:22:19 Asha Dahya

No, I agree and it sounds like there has to be a holistic part of healthcare, not just your physical health, but mental health, emotional health, spiritual health. All of that is part of it.

 

00:22:30 Ricki Fairley

Really a mental health professional should be part of your care team when you have cancer.

My navigator said you want to see a psychiatrist. I’m like, well, I’ve never seen a psychiatrist before. I never had therapy. And I said, well, is that going to cure my breast cancer is I can help. And I did see a therapist, and it was a great thing. It was a great part of my care and I recommend that to everybody, every patient because you know, I hear women say “getting my breast cut off is like, you know, emasculated or being castrated.”

Those kinds of words they use. So what does that mean mentally? What does that do emotionally when you, you know, even losing your hair, you’re bald and healthy is way better than cancer and hair, you know? But things cause emotional strife and you have to address it and it should be part of your care.

 

00:23:24 Asha Dahya

Absolutely. You said. You know, when you get your nails checked, check your breasts and you know that whole self-care 360, you know, view toward life. And I wanna talk about Segway if I can. To your former co-founder Wanda McCulloch and and also where the name touch came from because it’s such a you know. Heartbreaking but beautiful story about who she was and what she did after her diagnosis. Can you tell me more?

 

00:23:48 Ricki Fairley

About Wanda. So I didn’t know. Wanda, our co-founder. She was young, triple negative patient.

a masseuse. And she wanted to give free massages to metastatic patients. Breast care patient breast cancer patients. And so she set up a foundation and raise money to be able to get free massages to women with breast cancer. And so, Valerie, my precious, precious Co founder, was on her board chair. And she helped her set up the foundation.

Like the 501C3 set up a board and helped to raise money to give these massages so Wanda had triple negative breast cancer. And as it does with young women that came back with a vengeance and she died after a year.

So I know. So we love her dearly. But Valerie, the board kind of disbanded and she said.

You know what? What? God is telling me to hold on to this foundation, this 501C3 that we just established and this name touch therapy. So she did. She held on to it. She paid the taxes.

Every year she did all the paperwork. She kept it, she said. I know this hasn’t another power or another purpose, and so we became friends. We both worked for an advocacy, other organizations, and we became friends. And so I kind of told her my vision for TOUCH, which was really to advance science for black women, you know, to talk about the science and you know, and there’s so many breast cancer advocacy groups doing great, great work. But I wanted to really focus on eradicating the disease. I want to get rid of it. I don’t want to be here in 20 years talking about we’re a very advocacy organization. So I told him my vision. And so one day, you know, we often talk at 6:00 in the morning. I’m going on my paddle board. And she’s like, walking or something. So she came home in the morning, 6:00 AM. OK Ricki, God woke me up this morning and told me to give you a gift. And she said. I have this 501c3 and she told me the story of Wanda and she gave me this 501c3 that would have taken probably a year to get in the state of Maryland where I live and and so we could instantly have a foundation be able to raise money and have a platform. And so I was going to call my organization.

00:26:00 Ricki Fairley

For the organization, the Black Breast Cancer Alliance. So we just made it touch the black Breast cancer alliance. And so now we not only do we reach people, what we touch people so. So Val’s our cofounder and she is my less blessed, blessed precious friend. Now. I spent the weekend with her last weekend and she lives in in Durham, NC. And she is our goddess. And so she actually now runs our Nurse Navigator program. So now we are together working with Pharma on their trials, helping them design, designing all the communication to patients. We say like, what’s black about it? And we’re taking their ugly brochures that look really horrible and have big words that people can’t spell. Throw them in the garbage and rewriting the copy and putting beautiful black on the on the on the pictures to get more black on recruited for the trials and then balls the fair got. So she explains the informed consent to the families.

And then she coaches these women on a 24/7. So when the doctor’s office closes at 5.

And somebody at dinner, the family has a question and they start to get nervous at 8:00 in the morning, whatever. At night or 2:00 in the morning. Have a headache. They can call Val building this nurse navigator program so we can help patients stay in the trials. So not only are we to perform a recruit for the trials and get the blood women in them, but also keep them in it.

 

00:27:21 Asha Dahya

That’s amazing. And so if someone looks like, because I know when you look on your website, there’s a portal for, you’re looking for trials, how does it work if someone comes to the TOUCH website. How would they get involved in the trial?

 

00:27:32 Ricki Fairley

We actually have three websites. The main one is touch bca.org and you can get to everything from that site, but then we have a site called when we trial.org and that’s specifically to educate about clinical trials. And then we have a site love of my girl spelled.

You are us.org for young women who don’t have disease to just educate them about black breast health. So. But when you go to either touch or when we trial, we have a page. If you want a clinical trial, it will click you to we have 3 portals on the site where you can get matched to a.

00:28:08 Ricki Fairley

So you could put your information in so one of them is for metastatic breast cancer. One of them is breastcancertrials.org, where it’s for all breast cancer and then one of them is for triple negative breast cancer.

So it takes to a trial that you could be looking. We are literally in the process of building our own portal that will be ready, hopefully like in a week. Or to anybody this time this podcast comes out and so we’ll have one portal that will be more of a matching portal. So we’ll be able to collect more information about the patients, your age, what kind of breast cancer you have, how long have you been sick? Are you metastatic? What are you needing? So we’ll start to be able to aggregate that data to be able to go back to pharma.

And say these are the kinds of trials people are looking for, but this is what? Well, these are and help them do a better job matching patients to trials. So there’s this overall website calledclinicaltrials.gov where every trial for every disease is in this.

God, God forbid. Horrible website. It’s like going to hell blindfolded with your your hands tied behind your back. It’s really very difficult to navigate. It’s very scientific and patients can’t go there.

 

00:29:18 Asha Dahya

Not made for the average person, clearly.

 

00:29:20 Ricki Fairley

no. So we’re trying to put a cushion around that and make it easy and make actually easy. So that’s what we’re building our own portal.

 

00:29:27 Asha Dahya

Clearly the need is there, and clearly they’re willing to take participants and expand the science and the pharmaceutical companies want to get better. And so it’s just a matter of, like, the vehicle to getting.

 

00:29:38 Ricki Fairley

Yeah, that’s what we’re trying to prevent. We’re trying to link patients to the pharma company.

End up on the companies to the patients. So I spend a lot of my days talking to our pharma partners about how to do it better and and you know what? I feel so blessed that they have embraced me. I mean, I was about and the President and bodacious and contacting them. But but they have embraced us and they’re funding our work and they’re giving US resources.

And they’re let’s do this work. And so we’re so blessed to have them as partners, and their hearts are so big to do this work and you know people See the love every day. From them, I see them reaching out. I see them. You know, even Genentech as we kind of started this nurse navigator program within. And they came to us and said, you know, we wanted to do a better job reaching patients. And we came to this together and, you know, and we we made this thing happen that doesn’t exist. We’re the only first and only advocacy company that’s providing nurse navigation for a clinical trial.

 

00:30:38 Asha Dahya

That’s, I mean, that’s huge. It’s it’s 2023 and that’s only existing now.

 

00:30:43 Ricki Fairley

Right, right, right. But you know, really impatient about being iconic. I feel like we’ve done. There’s so many people in this space doing work, but they’re doing the same as they did last year and it didn’t work last year. You know, one of my favorite Albert Einstein quotes is a problem cannot be solved within which the framework which was created right. You know that quote.

 

00:31:03 Asha Dahya

Ooh, yes, that’s that’s a powerful quote.

 

00:31:05 Ricki Fairley

So we’re trying to like do something different, you know.

We have two hashtags: #GSD Get Shit Done.

 

00:31:13 Asha Dahya

I love it.

 

00:31:16 Ricki Fairley

And and the other one is #DIS Do Iconic Shit.

 

00:31:20 Asha Dahya

Ohh, I love that too.

 

00:31:22 Ricki Fairley

We’re trying to be iconic and I’m impatient to get this done, so I’m gonna challenge everything every part of the spectrum, you know right now we’re challenging screening new screening guidelines came out a couple months ago and there’s no screening guidelines for Black.

If you read the print, they basically lowered the age for screening for mammograms from 50 to 40. Well, black, only 930 bucks. So 40 is not even good enough, right? But also, if you read the fine print for women of average risk, well, black women don’t have average risk.

We have high risk. And so they only even have guidelines for us, because those guidelines don’t work. So I’m pushing that envelope. We’re, you know, we’re we’re getting support from from Congress. We’ve been like loving, you know, to help get better, better screening bills and stuff. So we’re trying to do all the things to change everything about the system.

 

00:32:22 Asha Dahya

It makes you wonder how many other people of different heritage and background and ethnicities, how many others are being ignored by the system and that intersectionality how it affects. I just turned 40. I’m I’m going for my very first screening in a month now and but like you said, you know, there are other nationalities and ethnicities and people with different heritage that are dying of different black women dying under 35. So yes, all of this needs to be revitalized. And so it really does take someone iconic to really change things up. And so I love that. And I wanna talk about the love of my girls campaign and tell me about what it does. And you said you’re, you know, you’re targeting young women, young black women. And it’s not just about self checks. It’s about a holistic view of your health. So tell me more about that.

 

00:33:09 Ricki Fairley

This is all Hailey and Emily. You know my you know, I live with 31 year olds, but they’ve really wanted to do something for women who aren’t sick. That wasn’t scared. That wasn’t about camp. That just would educate young women about and. And I kind of spoke to this earlier, but they’re basic kind of three calls to action. Know your body. Look at your breasts. Know your breasts. Know it like with conviction, like touch them. Feel them, know them. And we have great tools to help you figure that out with your grandma. Sit down with both grandmas and talk to them and get them to pull it. Pull it out of them, and then the third one is, as I said, make it an active self-care, make it part of your routine. So we have a lot of swag that helps you remind you of that. Like we have hair bow. It’s so when you go to bed, check your breasts like they’re trying to connect all the, all the swag to like a life thing so that people will practice, you know, taking their breasts while they’re on, you know, in their in their daily life. We’re doing stuff like doing roller skating parties. We’re doing a day of beauty in Chicago in a few weeks. Do you like makeovers? Come get new eyelashes or whatever. So we’re trying to again go into the community in a big way. We have an HB CU internship program that we’ve had now for four years, though I think we have. We’ve now up to 65 interns. We have 10 right now. we’re doing a black college tour at homecoming events. So wherever we have an intern, we’re doing an event. So the interns are bringing their friends together and our interns manage our TikTok, which I don’t even how to turn on. But so we’re now bringing in some TikTok influencers to help us talk to women.

It’s really fun. I mean, you can check it. We have a really, cool video on our site. The colors are really very retro in 70s. You know, we want them to talk, just talk, talk, talk, talk, talk, talk to your mama, talk to your auntie, to talk to each other. And then we ask our interns to make a video with their mom or their grandma and their best friend. During the internship we get these great conversations where in most circumstances it’s the first time they’ve already talked to their moms about breasts. We’re trying to make it fun and if black breast cancer is a thing, then black breast health is a thing

 

00:35:24 Asha Dahya

Yeah, that’s amazing. And I love the way that you’re just really filling in those gaps that exist, like those knowledge gaps and those conversation gaps. And the other thing that I love that you’re doing is the the weekly Facebook live web series and the doctor is and tell me about that and and how that started because that’s really sharing the knowledge and amplifying this issue of black breast cancer just exponentially.

 

00:35:49 Ricki Fairley

We literally started the doctor is in at the beginning of COVID and and so we our first episode was April 15th at whatever year that was 2020 we we officially launched touch that June we started the show and and so we have our our great medical director Monique Gary she’s a breast surgical oncologist in Pennsylvania and she and I have worked just on the phone once. She rang me Saturday afternoon and we both just gotten some calls from a Breastie saying I’m not going to go to chemo. I’m not going to get my mammogram because of COVID. And we’re like, oh, my God, they can’t do that like that. We didn’t know what COVID was, and we didn’t have a vaccine but they can’t not go to chemo. Oh, my God. Right. So I said, OK, let’s do a Facebook live. I love Facebook. I’m like a Facebook fantatic. And we just started talking about you guys. Get real. Go get your mammograms. Go do your chemo. We cannot let COVID stop you from doing your treatments. And we have, like, 800 reviews on my Facebook. And so I’m like, hmm, I went with this meeting. So, so, you know, I’ve done marketing my whole career. So one of my good friends owns blackdoctor.org. And so it’s really a platform kind of like WebMD for black people and but their Facebook page has 2.2 million followers. So I sent the video ready and he’s like, well, let’s make a show. I’m like, well, how do we do that? He’s like, I know, Ricki, figure it out. We started out by saying, OK, we’ll do 20 shows, 20 episodes and we didn’t know what I said then. We have 20 topics. The 20 topics ended and we just kept on going and now we’ve done 3 1/2 years during COVID we had huge audiences because people couldn’t go anywhere, so our best show, we had 80,000 views. And we don’t average around 30 or 40 now we’re like 5-10,000 a week. We have a pretty loyal audience and they’re from all over the world and we talked to them in the comments pretty readily. We talk about everything and anything, we just don’t seem to be running out of topics when the show is booked through January now next year, so.

 

00:37:54 Asha Dahya

Oh my gosh.

 

00:37:55 Ricki Fairley

Every time I meet a new friend, I bring him on our show. Brings her sign. She’s very brilliant and charismatic and lovely. And I bring the Breastie love and we just talk. It’s like me and you were talking like a kitchen table conversation. And actually, you know the guy this morning who wanted to be on the show. And I said, you know, we don’t have a lot of men on our show. So you’re really going to have to, like, pass my test because it’s a girl. Then he passed the test. But you actually said he had watched a couple of episodes. He said he felt like he was piercing A sorority meeting. But we do try to make it about the issues that we deal with, whether it’s lymphedema or or I can’t sleep tonight or I have vaginal dryness or my kids are driving me crazy or I don’t know how to cook. Right now I don’t feel like cooking. What can I do? So I mean it could be anything and we try to hit on every topic that’s relevant to a crusty. We interviewed our breasty friend, Sheila Johnson. She is an amazing metastatic chiro. And she’s been metastatic for 12 years. She was diagnosed metastatic at age 43. She is living her best. I think she went to six Beyoncé concerts for metastatic breast cancer. And so BET made a movie about her and it’s coming out next week. So we had her on the show with the director and a doctor, Doctor Contessa, who has, like, she’s like a celebrity doctor in Atlanta. And she played the doctor in the movie. So we had a show about Sheila. The week before, we talked about all the doctors that you should encounter on your care team. In addition to your oncology that you should have a, you know, mental health professional just who should you be putting on your care team.

And we repeat a lot of stuff, though, because every day, every day, every day I wake up and I think, OK, who’s going to get that call today? Yes, you have breast cancer. So we have newbies coming into our breast club every day. I just got a text before I can talk to you about. You know, she just had someone die in her life. Can we talk about death? Talk about Hospice and palliative care and all those things. We did a show on moms whose young daughters died of breast cancer.

We do a love show on Valentine’s Day of couples, we’ve done a show where we had prostate and breast in the same house happen more than you know. So we’ve talked to grandmothers. We’re doing a show our next week show. I see my other daughter Amanda. She works for gofundme. So she’s going to do a show and how to do a go fund me for his money for your college, for your for your if you want to party or go on a trip, or do your own make up. We just feel like it’s an outlet for our women. We do it and it just keeps happening. 

 

Asha Dahya

That’s incredible. So the week the doctor is in on the blackdoctor.org Facebook page, everyone should tune in and, you know, just see the community that’s being built and the information that’s being shared. I I really love this. And Ricki and I, I don’t wanna take too much more of your time. I know you are busy in your peaceful, iconic state. we don’t add any stress, but before you go, What message do you have to women of all ages, black women who are maybe finding out they’re diagnosed for the first time? How would you encourage them? How would you support them? What do you want them to know in this moment as they begin their journey?

 

00:41:12 Ricki Fairley

Just get the best care you can and Healthcare is not always available to everybody. Don’t go to the emergency room to get this care. Get the best care you can and we will help you. Call me. Text me, e-mail me and I will help you find a doctor and a care team. Get the best care you can and also know that your piece is non-negotiable. Make choices in life, find joy in your life and we have so many Breasties who are like working through chemo. Don’t walk through chemo. Take FMLA. That’s what it’s for, you know, like, take a minute. Take care of yourself. But know your bodies, know your bodies be. Be aware of your body. Not only your breast, your whole body. You know. You know your body better than anybody else. So be aware of it. And take care of yourself, be the CEO of your own health. But if you do have a lump and you do feel scared, you know, call us. We have great support systems. We have, we have touch talks every every month and and we’ll help you get to and through this diseases how we like to say it, just love on yourself and get the best care you can and then find joy.

 

00:42:13 Asha Dahya

And make sure you visit touchbca.org for all the information and links to the other websites. Ricki before you go, I do have one more question. Sorry. There was two questions. What message do you have to everyone you know in terms of breast cancer action not just awareness, but action beyond the month of October. Why should this be a year round conversation?

 

00:42:34 Ricki Fairley

I wish people only got breast cancer during the month of October, but they don’t and and it kind of, you know, kind of reminds me of Black History Month in February. I’m still black on March 1st. I appreciate the attention that we get during October like I wear a lot of pink and I fly a lot, so I get upgraded on delta all the time, which is great. I love that, so we appreciate all the stuff, but this is going on all the time. Women are getting sick every day. Women are dying every day. So just be cognizant of it and you know, one in eight women are gonna get breast cancer. One in eight around your circle of friends, you know, almost everybody you know has some cancer story, whether it’s not breast or something else. So just be aware of it, but you know, do the right thing, you know. You know, I would love to eat Mac and cheese and fried chicken every day, but I don’t take care of your body. Move your body, take a walk. I tell everybody, take a walk, you know.Just take care of yourself and this is the only body you have to be grateful for it and you know you can’t prevent breast cancer, a lot of other cancers are you can’t early detect it. So know your body so that you can position yourself to early detect it.

 

00:43:43 Asha Dahya

That’s powerful advice. Ricki Fairley, I’m just so in awe of everything that you’re doing. And I’m really inspired to take these messages and share it with my community. And I hope our listeners will too. But thank you so much for your time today and everyone, please check out touchbbca.org / “For The Love of my Gurls” website. Well, thank you so much, Ricki Fairley, you are iconic, you really are.

 

00:44:07 Ricki Fairley

Thank you so much.

 

00:44:09 Asha Dahya

I hope you are moved, motivated and informed as much as I was by this conversation. I also encourage you to share it with your community and in your conversations this month and ALL year round when talking about breast cancer. 

You can follow @Touchbbca on instagram, and tune into Ricki’s weekly “The Doctor Is In” Facebook live web series on the Blackdoctor.org Facebook page. 

Be sure to share this episode with a friend and help us spread the repro film message and mission by subscribing to our Periodical at rePROFilm.org.

 

The Repro Film podcast is executive produced by mama.film

Hosted and produced by me, Asha Dahya, 

Edited by Kylie Brown, 

With original music by ParisJane and Marrice Anthony.

The periodical is programmed by Neha Aziz and written by Emily Christensen 

Alex Sgambati is our Social Media Manager

You can find us on social media @reprofilm on Instagram, watch our additional video content on our Youtube channel @reprofilmorg where you can catch the replay of all our recent IG lives, as well as filmmaker screenings and panel discussions with yours truly! 

Bye for now!