Episode 57: Why do Black women with breast cancer have worse outcomes?

Ricki Fairley (00:02.014)
Yeah, so it was actually really funny because we were having a work retreat that like ended up being in Miami. So my mom was like, we're never going back to Miami for a work retreat. You guys did not work, aka me. But while we were doing that, we thought of my husband thought of the word blessed because we were looking for a term that encompassed kind of the

Again, for us, our work is like, what's black about this? We focus on black breast cancer. And so we thought about the word breast is, like, how do we make this more black? And it's like, we all pretty much grew up in some kind of jerk setting. And the concept of feeling blessed and feeling deserving is a large part of our community. And so that word just worked really, really well. And so we made it. Now we have two shirts, logos, all kinds of stuff. We love you better than breasting.

The Patient from Hell (00:58.275)
Okay, I'm gonna ask you probably a dumb question, I apologize, but can you tell me what's black about breast cancer?

Ricki Fairley (01:01.151)
No.

Ricki Fairley (01:04.778)
Alright, so when I got sick and I started to dig around, I'm a marketing person by trade, so I live by PowerPoint, like making PowerPoint decks, right, showing research, trying to figure out what to do, right? And so I started putting all the data together in a PowerPoint presentation. And when I saw, you know, black women have a 41% higher mortality rate than white women, black women have a 39% higher recurrence rate of breast cancer than white women.

Black women under 35 get breast cancer at twice the rate, die at three times the rate of white women. Black women between the ages of 20 and 29 have a 58% higher chance of dying from breast cancer than white women. I can keep going. The stats are horrible. Black women are three times more likely to get triple negative breast cancer. And so I put this all together in a PowerPoint presentation. I said, something is wrong. And no one could explain the numbers to me.

And I went to the big breast cancer conference in San Antonio that happens every December. And I started talking to our, to pharma, the pharma companies that make breast cancer drugs. And when I painted this picture for Black women and said, this is a devastating situation. This is basically a crisis. And what are you doing about it? No one had really thought about it that way. I said, well, something's wrong. So I'm gonna call it black breast cancer. Black breast cancer is a different disease. And then I went back and looked in history to look at the clinical trials for all of the drugs that are standard of care that we all take,

and there were no black women in the trial. And I said, well, these drugs are not working for us. And then I started to look for scientists doing research and it started to bubble up. And now we have this community of scientists that are basically validating and proving that a white breast cancer cell looks different from a black one. And we're doing it by subtype, by stage. And so basically black women die of breast cancer at any stage, including zero, any age,

any subtype, and any level of affluence you recently found out too, like having the same insurance as this white counterpart doesn't change their outcomes either. Yeah, we have this, we work with a scientist at Emory and she did a study that found that black women who have good health insurance still have a 60% higher mortality rate than white women with good health insurance. Black women who live in a socioeconomic, high socioeconomic neighborhood have a 126%

The Patient from Hell (03:10.945)
Wow.

Ricki Fairley (03:29.258)
more likely to die of breast cancer than their neighbors in the same neighborhood. So it's not about money, it's not about status, it's about science and the cells are different. The drugs are not working for us and we need different science and that's why we're so focused on advancing the science and trying to get better drugs and trying to get more black women into clinical trials. Also right now, black women only have a 3% participation level in clinical trials, which is basically zero. And frankly, the FDA can't even explain what that number means.

Like how many women is that? And they stopped measuring it. So until we get more black women into the resource of developing the drugs, we're gonna keep dying. And I think too, when you talk to the FDA, cause again, we're like, what is it? Let's fix it. We don't even care who the problem, where it started, let's just fix it. You know, when you've been doing the research, we're talking to them, like now the FDA has made it so, clinical trials have to have a diversity plan, right? But there's not many

criteria for that. It's just like have a diversity plan. There's no like, this is what that needs to entail, you know? Yeah, and they don't have any metrics for how to vote. Exactly. And so like right now there's this thought of like we told them to have a diversity plan, but like there's no checking on that. There's like little accountability about what that actually means. And so I think we just have to like dive into that criteria.

The Patient from Hell (04:52.085)
Can I maybe summarize what I'm hearing from you guys? Because I think there's a very, very important point you all are making that I'm not sure is well understood in the broader breast cancer community. Because what I'm hearing you say is it's not about socioeconomic status, it's not about money, it's not about access, it's not about wealth, it is about the biology of the disease.

Ricki Fairley (05:16.478)
Exactly, exactly that. Clearly access to care, when you get the screening guidelines, all of those things play a role, but at the end of the day we're dying because the drugs don't work. We're dying because, you know, clearly you could blame it on the fact that we, since we didn't get screened under 40 because the mammogram guidelines are for 40, that we probably got the first cancer diagnosed at a later stage. That clearly also plays a role here, but still.

When you get someone who takes the drug and it's a white woman to a black woman, the black one's gonna die.

The Patient from Hell (05:50.989)
Wow.

Ricki Fairley (05:51.433)
Yeah.

The Patient from Hell (05:53.549)
Do you guys know from your work whether there's any sort of genetic studies done on the different cells?

Ricki Fairley (05:59.874)
There's a bunch of genetic studies. So I recently learned about a thing called variants. And actually it's a variant on your cell and we know that black women have different variants. So we're actually working with Melissa Davis, she's an incredible researcher at Morehouse School of Medicine. She just got a Cancer Grand Challenge grant and we're doing the patient advocacy with her. And she's studying four factors, okay. So.

the social determinants of health, so what's your body mass, where do you live, what are you eating, all those kinds of things, right? The genetics of your cell, and clearly though, genetic breast cancer is only about 5% of breast cancer, okay, have to have a gene, right? But we know it, and we don't know for black women because there could be some genes we haven't identified yet, okay? So in the black community, a family history is pretty equivalent to having a genetic history.

So if you've got a couple of generations like we do, I don't have any genetic mutations, but we have three generations of breast cancer on one side, colon cancer on the other, so that counts. The other one is genomics. So that's like the biology of the cancer cells, right? And the last thing is epigenetics, which is the environment. So do you live in Flint, Michigan, where the water is bad? And so our study is basically those four factors, studying those four factors, a black cell versus a white cell, for breast, pancreatic, and prostate.

And we're doing it in the UK, Ghana, Nigeria, South Africa, Ethiopia, and Kenya. And she's done research in West Africa already that's validating that there are significant differences. She already identified a gene in Ghana called the Duffinol gene that could be attributed to triple negative breast cancer and black women. So we're looking at those four factors, and now we're looking at the gestalt of all of those factors. Like, how do they impact each other? And you put them all together,

put that cancer cell that's been analyzed and all those filters together, what does that look like? So there's been genetic research done, there's been some genomic, but not a lot. And even in the genomic research, there are no black bodies in the cells that we're studying. And I think too, it's also like so many women, like her college roommate, who's also a blesstie like when she went through her cancer diagnosis, and now she's an amazing survivor,

Ricki Fairley (08:18.402)
but no one ever asked her if she wanted genetic testing. And so she didn't get genetic testing until years later. Despite the fact that she has a daughter and kids and they could have just said it was for your kids. And so, but she has BRCA. And she didn't know until 10 years later. And so it's like, why are we not even making it standard of care to get genetic testing when you get diagnosed? So we can even dive into this research.

So she ended up having her ovaries removed because she had a risk of ovarian cancer and she has a daughter, so.

The Patient from Hell (08:53.775)
Oh man. Okay, so I had a question for you, Ricki. How did you go from being a marketer to knowing so much about the biology of the disease?

Ricki Fairley (09:04.006)
I studied it, I studied it. I wanted to figure out why I was sick and I found some really great doctors to help me. So when I first moved to Maryland, after I was sick, I quit my life and started a new one. I moved back home to where I grew up in Annapolis and I still had my port. I was just a month out from my second go round of chemo. So I met my doctor at this common lunch that somebody had invited me to. And so...

I said, can you flush my port? So when you have a port, you have to get it flushed. That means they've cleaned it out so often, right? And so I found when they wanted to do it, she's like, well, why do you have a port? And I said, because my oncologist in Atlanta told me I would have it for the rest of my life. She said, you can't just gonna come back with your triple negative. You may have to see the port in. And she wouldn't take it out. And Dr. Regina said, Vicki, we're taking that thing out. We can get the OR on wine cinch, and she took it out for me. But even just the mentality about triple negative was you're gonna die,

you're going to get it back. So I know I'm crazy, right? So that's how I met my doctor. And she was like, we're not taking this, we're going to take it out. And I thought, you know.

The Patient from Hell (10:15.373)
Okay, can I – I have two questions for you.

Ricki Fairley (10:18.932)
Okay, can I answer the last one? Okay.

The Patient from Hell (10:20.265)
Yes, you totally answered the last one. And one I think is a, it's a, I'm just gonna ask it and then you can tell me if I should change my question, okay? Alright, so one on the port, I hear you. I had a port for 18 months and I am amazed, the doctor told you that you couldn't remove it.

Ricki Fairley (10:31.955)
Okay. Yeah.

Ricki Fairley (10:36.819)
Okay.

Ricki Fairley (10:41.79)
Yeah, I had it for two and a half years.

The Patient from Hell (10:44.169)
That to me is just...

Ricki Fairley (10:45.974)
Like what have you still had it? I know I had my tissue expanders for two and a half years because I had to go back on chemo so I couldn't get my surgery.

The Patient from Hell (10:56.168)
Vicki, that just... I feel...

The Patient from Hell (11:02.121)
I don't think I haven't heard any anger from you at all. I am feeling angry right now, which is why.

Ricki Fairley (11:08.348)
You know what, I know so many women that died from what I had. I feel so blessed to be here that I'm not angry because I feel like my experience gave me my purpose and it is my God's work. I feel like God gave me this job to do and so I'm not angry. You know, I mean, you're so much younger than me though so you should be angry.

I'm angry when I see young people with breast cancer, with triple negative breast cancer, and I'm angry that we don't have the drugs that we need and the resources that we need. And that's what drives me to yell at people every day because I am angry when I talk to them. I'm like, your baby is ugly. What are you doing to help us? Like, what are you doing? And I'll give you a hug. I'll, you know, but give me a different baby because this one's not working for us.

The Patient from Hell (11:55.309)
Okay, so my, my like potentially inappropriate question is I haven't heard you say the same one so far. And I'm definitely probably going to be putting words in your mouth. I know you're not saying it. But I know one of the things that drives me in the work we do at Manta is the injustice of it. Because it is an element of injustice, right, which is

Ricki Fairley (12:10.763)
Yes.

There is, I mean, there is no health equity. You know, people talk, I love, we were just doing this panel with blackdoctor.org and all these, all these pharma people have the title. I'm the director of health equity. I'm the VP of health. What the hell do you do? Because there is no health equity. I, you know, like, what are you doing? What is your job? Tell me how you do this. Show me the money. Show me what you got from me. Because the way I look at it is, we don't have health equity. We have...

The Patient from Hell (12:17.709)
Thank you.

Ricki Fairley (12:39.042)
We have a lot of health illiteracy, and Hayley actually hates when I use those words because it blends so I feel like I'm going home patient, but people just don't know. Black people don't talk about health at the kitchen table until Uncle Pookie gets his leg amputated, or Grandma Edith is in hospice. We don't talk about it, we don't know about it. We keep a lot of secrets from each other. The secrets are killing us. And we don't know, you don't know what a clinical trial is until you have to do one, or until you're in a crisis, right? So we don't know, and so I don't.

The Patient from Hell (13:02.548)
of tonight's episode, which means a lot. So thank you.

Ricki Fairley (13:05.558)
we're going to get to help equity with people being not educated to the extent that they need to be and being treated with the golden rule. What's your mother taught you when you were two years old? Treat others as you want to be treated and when everybody wakes up in the morning every doctor, every scientist, whatever and says I'm going to treat everybody like I want to be treated and so we send patients back to the doctors so often saying you go back to that doctor and say is that the treatment plan you would give your mama, your auntie?

The Patient from Hell (13:21.317)
That's it. I'll see you next week. Bye. Thanks for listening.

The Patient from Hell (13:27.693)
So, thank you for taking the time to speak with me.

Ricki Fairley (13:31.914)
your grandma, your daughter, because if it's not good enough for your family, it's not good enough for me. And that's we educate them. And I think between Hayley's you know, education experience and my marketing, we've created these messages that we test and are resonating with patients. We try to help them deal. I want to shout out my first week at work. I will not really I was like taking a quick vacation before when my school year ended. And then I was going to start working for her. But I

The Patient from Hell (13:37.538)
Thank you.

The Patient from Hell (13:44.265)
with these messages.

The Patient from Hell (13:50.477)
Thank you.

Ricki Fairley (14:01.61)
like met with, I was visiting my friends in California, and I met with a nurse navigator who's a, you know, very much a part of our community, Auntie Zee. She was like, I knew a lot from when I first met her, and she was like, no, breast cancer is a social justice issue. And like when she had framed that for me, it was a really great framing for me to just like start this work, because I did have that in the back of my mind and still do.

The Patient from Hell (14:09.153)
Thank you.

The Patient from Hell (14:15.885)
judicial justice issue.

The Patient from Hell (14:21.549)
to start this work. Good luck to you. Yeah.

Ricki Fairley (14:26.578)
And that's why I feel like you choose words like we are going to be iconic about this because in order to move this needle and change this issue, we have to see it as the urgency that we approach a social justice issue.

The Patient from Hell (14:28.169)
So it's important to be iconic about this, because it's like an honor to have spent a moment with a person that's actually active.

The Patient from Hell (14:41.839)
So I really appreciate you framing it that way. Because in preparation for this podcast, I assumed we would be talking about social justice. I had not assumed we'd be talking about the biology of the disease being different. And I think that's actually, the reason I say those two things together is because I think part of the problem I think is in the breast cancer community is...

When we talk about race, when we talk about social economic status, when we talk about social determinants of health, there is a blasé acceptance of it.

Ricki Fairley (15:13.622)
Yes, the social determinants of how I collect this big bucket, you just throw shit into. Okay, well, obesity, or you didn't nurse your babies, or whatever, and I see that happening, and it's so much bigger than that. It's so much broader than that. And so we try to break it down and say, focus on the science. What is happening with these cells? What is that drug actually doing to these cells? I don't care about what they ate for dinner or that they live in a food desert or.

The Patient from Hell (15:20.465)
crap.

Ricki Fairley (15:42.374)
If the sales are not functioning the way that they should, the drugs aren't gonna work. Yeah, the access to care, yes, we agree, we need better access to care. With that said, if the medicines don't work, then what's the access to what? You know, like we want the medicines to work. And so like we, it is a twofold issue in that way, but like we can't say, hey, like let's fix the access to care issue if the medicine's not working.

Now, Zee will tell you, Auntie Zee will tell you that, you know, she works at an inner city hospital in Oakland and she triages her patients before she can even talk about chemo. When was your last meal? Where are you living? Where are your kids? You know, where are you going to sleep tonight? So she does have those conversations because of who her patients are. And so that isn't, those are issues. Those are clear issues. But they're issues for any disease, for anything. Not just breast cancer,

right? She could have diabetes and have the same issues. So, but for breast cancer, even if you give us the medicine, if the medicine isn't right, and frankly, you know what, I believe this is true for many diseases, okay, because most, most drugs are tested on 50-year-old white men. So when you see these black people with diabetes at age 50, getting blind and losing limbs, and the white person taking the same drugs at age 50, thriving, what's wrong with that picture? To me,

The Patient from Hell (16:55.661)
Yes.

Ricki Fairley (17:09.538)
those strokes were never tested on our bodies and they're not as effective. We're seeing it with heart disease, diabetes with kidney disease, and so I really believe what we're seeing in breast is gonna be rampant across every disease state when you start to look at the science. And we just came from this conference where there are 100 people in the room talking about this, talking about cancer and talking about the black diseases, kidney disease, heart, all the things, cardiovascular disease, but I feel like

The Patient from Hell (17:11.413)
Yes.

Ricki Fairley (17:38.47)
We came into this space with breast cancer to look at something different. I wanted to understand why. Why is this happening? And I don't feel that the other guys have gotten there yet. But they're gonna get there because I believe the same stuff is happening. Those drugs are not made for our bodies. People weren't tested. They weren't tested on black people and they're dying in different numbers. So if black people have a higher mortality rate across a plethora of diseases, something's wrong.

And so I feel like, you know, they just haven't gotten there yet. And I've been like, a pain in the ass. And when you talk about breast cancer, it's a funny world because it's like women led and so like things just happen faster. You know? Well, you know, breast cancer, we have more problems than any other cancer, than any other disease really, because it's women. Yeah. We all take care of each other, you know, and we're a problem solver, right? Like, how can I help you babe? That's the fun part of the work is that we do, we don't, we don't really see that besides our

our partners in this work.

The Patient from Hell (18:42.145)
I want to draw a parallel and maybe potentially an unfair parallel. But so I grew up in India. I came to the US for undergrad. But when I hear you talk about breast cancer, it reminds me of breast cancer back home. Right. Again, it's South Asian women are not studied. So similar issues, but not enrolled in trials. We are bucketed in Asian and Asian is well, Southeast Asian.

Ricki Fairley (19:08.17)
Everybody, right. Right, right.

The Patient from Hell (19:11.477)
Genetically, we know we're different, right? And I remember this moment where my oncologist and I were having this debate because she wanted me to go on a specific type of hormone therapy. And I was just like, this makes no sense. She's like, it's guidelines. I'm like, yes, but look at the trial. Look at the number of women at 30 who were enrolled in this trial. It was south of 3%. And I was like, okay, now do a demographic cut and tell me how many 30 year old South Asian women were in this trial. We're talking...

Ricki Fairley (19:13.857)
Right.

Ricki Fairley (19:30.884)
Right.

The Patient from Hell (19:40.481)
five people, two people, and you're going to tell me, I'm going to take 10 years of treatment on that? And so we had a whole debate on it. So I– eventually she said, you should try it, experiment with it, see how you feel. And I was like, okay, fair enough. Like, you know, enough one experiment, all right, I'll try it. I came back and I had these horrible joint pain, like horrible, horrible joint pain. The conversation with Mira, that's not in the trial. We haven't studied that adverse effect, it's not in the trial.

Ricki Fairley (19:41.654)
Right, right, right.

The Patient from Hell (20:06.729)
I just happened, and this was pure coincidence, I happened to talk to a clinician who happened to be a PI who brought that drug to market. And in conversation with her, I was like, hey, I'm having these symptoms, it's not in the trial data. She goes, yeah, but it's a known thing and it happened in the South Asian population that we had. But because the N was so small, it never made its way to the actual study.

Ricki Fairley (20:27.702)
Never met a physical, yeah, no, never did. Yeah, yeah. Well.

The Patient from Hell (20:30.993)
I just knew that I'd think like...

Ricki Fairley (20:34.07)
So typical, it's so typical. It's like going to, like, it's, whenever you go to the DMV, right, you're just like hating that experience because usually someone's looking at a list of things and saying if you don't have these things, you just can't get, you know, we're not gonna serve us today. You know, it's like these guidelines, right? And so it's like the fact that somebody just looked at this piece of paper and said, you check these boxes, or like, here's the medicine for you because you check these boxes, versus like,

looking at a whole person using their brain, you know, it's like, why am I getting the same experience in my health care, you know, you expect it when you go to certain places, but like not right in my health care, you expect in what we want is individualized care, right? We want you to be in an experience where you get what you need based on even like, I've heard moments where, you know, great oncologists said,

I know your daughter's getting married, let's make sure that your chemo is planned around that so you can be a real person that day. You know what I mean? Like even those small choices would make a really big difference for people who are in trials, want to be a part of the science, but like don't know that that's an option or like not all oncologists give you that option. Yeah, well that's treating you like you want to be treated, you know? But even like a lot of the protocols, like there's a protocol that...

a double mastectomy is equivalent to a lumpectomy plus radiation, right? So you have to get your boobs up. Well, guess where that study was done? In Sweden, 60 women. The BRCA gene came from, I believe it came from, where the Mormon people are? Oh my goodness. You know, Utah. Yeah, Utah. There's no black people in Utah.

The Patient from Hell (22:15.041)
You done?

Ricki Fairley (22:23.619)
Thank you. I literally have, we will have a conversation later. But yeah, but I mean, a lot of these studies that are driving standard of care did not include women of color. You can find the one study to back up your work and it would just be like this small thing, right? Like that's what we're dealing with in this world that like you can just jump off this ledge because you saw one piece of information from this obscure thing.

or article and so it is like how do we make sure that people are doing this homework and have this space to do so much. Do they have a wifi to do this homework? You know? Right.

The Patient from Hell (22:58.613)
I want to share, I'm so happy you just said that, because I want to share, actually, one, I'm gonna go back to something you said before, before I go there. I have never heard anyone compare getting cancer treatment to going to the DMV.

Ricki Fairley (23:10.614)
I just did that for the first time and I'm gonna do it again because it's like, why is this a thing?

The Patient from Hell (23:16.14)
I think you are totally right. I think that is actually an incredible thing. That is brilliant. I think that is such a good analogy. I think it is so accurate. I actually agree.

Ricki Fairley (23:20.054)
It's a great analogy. Yeah, yeah.

Ricki Fairley (23:27.934)
There's a checklist. Let's go down the checklist. And frankly, the checklist isn't thorough. The checklist was developed by somebody who hadn't really thought about it because- It was probably made in Sweden. Yeah, right, because the black people get a different checklist because they don't get genetic testing. They don't get genomic testing. And they have a different checklist. You know, other people- Do I need a different checklist because I am, because I look this way? Right, right. You know what I'm saying? Like, what are-

where is this criteria coming from and how are we deciding how it's implemented? And then while we implement, are we looking outside of it just because this person is presenting something new? Like joint pain, right? Are they like, take me a second to say, hey, let me figure out why that is. Not like, oh, sorry, we didn't see that in the study. Or why did my nails turn black? Or why did my tongue turn black? Or like, we're having different symptoms that were never recorded. Were never recorded, but frankly

every black woman who does chemo, whatever, any person who does chemo, you are doing a clinical trial in your body because that drug was never tested with your body before. So when I explain clinical trials to people, I say, you're doing one right now because with your putting this chemo into your body, you hope it's going to react in a way that's been seen before, but maybe not. You don't know. And for me, I took TAC, you know, Taxi-Terra, Adriamycin, Xytoxin, the cocktail.

The Patient from Hell (24:30.337)
Yes.

Ricki Fairley (24:52.458)
It didn't work for me. My cancer came back.

The Patient from Hell (24:56.813)
I think you said something super, super important right now. And honestly, it's the reason we call our podcast what we call it. So the podcast is called The Patient From Hell because there's a book that was written by a professor at Stanford that I happened to get my hands on. Actually, someone gifted it to me when I got diagnosed. And he essentially argues that medicine, as it's done today, especially trials, is done on populations. It's cohorts, right? It's groups of people. And the reality is, if you are an outlier,

Ricki Fairley (25:14.126)
BLEH

Ricki Fairley (25:20.582)
Yes.

The Patient from Hell (25:25.341)
a deviate from the cohort it was tested on, clinicians and medicine generally do not know how to treat because they're not that way. The science is not done that way and they're not trained that way, which means that if you're a patient, that you are an outlier on any dimension, the only way to navigate oncology is to figure out the self-experimentation because you're totally right. You getting a chemo drug when the trial was not done on someone like you is effectively like you getting that drug with no data.

Ricki Fairley (25:33.602)
They don't.

Ricki Fairley (25:54.322)
Right, exactly. It's totally that way. It's totally that you're getting that drug with no data. That's why I actually love the Manta Cares notebooks. I like to write things out. I wish I had that when she was going through her diagnosis because a way to just like track the symptoms as we see it. That's why we have, you know, we have been working through nurse navigation, the end-credible trials through Touch Care. But like, it's so important to start recording those things because like...

how cool would it be if we find that like, oh, the third week of everyone's thing, they felt this way. And it's like, if we can start to like name these things, how great is it for patients say, third week, take off, because you know, it's gonna be rough, you know, just like anything like that would be so great. Even the guidelines, the, you know, the current guidelines from the US task force are, you know, basically, it says, if you are, if you are at high risk,

The Patient from Hell (26:31.949)
Yes.

Ricki Fairley (26:50.966)
these guidelines do not work for you to get a mammogram at age 40. What does that mean? Black women, women with BRCA and women over 70. So there's a, you know, if you read the small type, these guidelines that we don't have guidelines for black women. It also doesn't say what there's no, like, there's no link to here's a risk assessment or here's a thing to like actually help you understand. We just don't have any guidelines for you because we don't have any data.

The Patient from Hell (27:16.621)
Ricki, uh, I'll share. Your comment right now is so timely. So I had to switch insurances because I was in a PPO plan, switched to a different plan. I had to switch oncologists, you know, classic like healthcare moment. Anyway, so I used to, to the point you're making, I'm not black, but I'm South Asian, and I skew young. On those two dimensions, I'm an outlier from the standard.

Ricki Fairley (27:37.228)
Right.

Ricki Fairley (27:41.225)
Right, from the standards, right.

The Patient from Hell (27:42.981)
And I have high dense breasts, which means that a mammogram effect is not helpful. That's not right. So my oncologist under my PPO plan was like, you need to do a whole breast ultrasound. So I've had mammograms for three and a half years and had whole breast ultrasounds with it. I go to this new system and this is what April 18th. It's been four and a half months of me negotiating to get a whole breast ultrasound. And I'm walking into the reason I say it's timely. I'm actually walking into an appointment today with a new oncologist.

Ricki Fairley (27:45.758)
Right. Doesn't work for you.

The Patient from Hell (28:12.189)
And in anticipation, I sent the guidelines, highlighted the part. This is why I am not, this is why I sent that. That was the only, once I sent it in writing was when the system took me seriously.

Ricki Fairley (28:15.498)
Right, right, right.

A Kansas-Burma immigrant, right. Right, right.

Ricki Fairley (28:28.95)
Well, she's been trying to get a mammogram for a year at age 31. I've been trying.

And also like trying to live the experience of the average young black woman, not someone who like is actually in this space for my age, just to even know what this is like. And I keep on getting, I got the referral for my PCP. And then I keep on going to these websites to make an appointment and it just knocks me off when I put in my birthday because I'm too young. And so, but the interesting thing is I recently tried to find a new PCP because I'm retired and

The Patient from Hell (28:58.274)
Yeah.

Ricki Fairley (29:04.63)
This is, it's funny that you're going to a new oncologist appointment because I want, this is like an interesting thing because we do tell people to be the CEO of their own health, to be a girl boss. And for me that says like, yes, date around to find the doctor that you want, that works for you. So I did, I did a primary care appointment with this doctor. I didn't want to go at first, not because I'm busy, but I've also been told you will keep your appointments. So, I will take more advice. Go this appointment.

thought it was in person and to being virtual, log in anyways, even though like I'm looking for something in person so I can like actually have someone fill me up and touch my boobs and tell me what I'm seeing. You know, yeah, like I want, yeah, please. But no, so I go to this online appointment and she basically, you know, it's like, not directly dismissing me, but I can feel that she is not understanding the urgency of the time giving. And so then she basically said like,

The Patient from Hell (29:43.513)
Yeah, maybe on the 5th floor.

Ricki Fairley (30:01.986)
I'll try to help you get a mammogram, which is like where we ended. But the thing for me, The doctor. The thing for me that was interesting was this. I also went to this appointment because I quickly saw that it'd be $50 to cancel, right? So I was like, just go, you know, just go. And then.

I got the bill for this appointment where I felt dismissed and it was a hundred dollars. It would have been cheaper for me to have not gone. Now what's crazy about this is it made me reflect back on my learnings or just my teachings around like I'm telling people to go date for doctors and I'm now saying like I now know how that might cost money and let me be clear about I'm saying that but I also want to be honest about how I don't have a solve for that piece because it's nice of my, I get to go

try to figure out which doctor works for me. If that was my last $100 though, I would not be in this scenario. Right.

The Patient from Hell (30:55.077)
So can we use that to go back to your comment on people don't have internet access? Because I think that's a really important point on access to care, and I actually don't think people understand that. I think in the world of chat GPT and AI, everyone's like, oh cool, new tech, we can solve healthcare problems with AI. And I'm like, well, you know, people don't have internet access, you guys. We're still in the world of...

Ricki Fairley (31:00.65)
Yeah. Yeah, no, I think.

Ricki Fairley (31:16.642)
Yeah, I taught in an inner city school during COVID right in DC. Um, my entire school, um, is, you know, like 99% black population in North East DC. And so that was my first time as somebody who did grow up, you know, really like privileged and to see how many houses didn't have internet when we sent Chromebooks home to these kids to do their online learning at home and they don't have wifi. And so it was a moment for me to just.

kind of put that together and kind of clue in because it was alarming to go ahead and make sure that all my families not only had the devices but also the wi-fi even bandwidth to do that, you know, to like to do their online schooling during COVID. You know? We also find, you know, we did a little research, we did a project on digital help and you know telemedicine and we find even, you know, most black women

have a smartphone. The penetration is like 95% or whatever, right? But that smartphone is the household computer. So during COVID, for example, that was the place where there are three kids did the homework with a single mom, right? They all had to share the phone or they didn't have the bandwidth. They had the phone, but they didn't have the bandwidth to conduct an interview with a doctor, right? Or they didn't wanna share their business in a small apartment where everybody could hear them on the phone with the doctor.

So they didn't have privacy. So there are a lot of issues around telehealth that we're not ready for. AI scares the shit out of me, I have to say it. I'm sorry, because if you look at, AI is built on the input that people are putting into it. What color are they? What brains are they? What education level are they? Who are these people, right? If they're inputting, and so they're building a system that's automatically flawed, automatically flawed, right? And to me, it's gonna be racism on steroids.

The Patient from Hell (33:02.427)
Yes. Mm-hmm.

Ricki Fairley (33:14.966)
because they're gonna make decisions, they're not gonna have a heart. Like even people who are ultimately racist, somewhere there's some level of emotion that's making them, you know, that's involving their decision making. This is not gonna be that. It's not gonna have that. And it scares me to death until we get that right. So I tell everybody, if you can participate in building AI, please do, because it's all gonna come back to haunt us. And we now live in this society where we have license to be racist.

We're still gonna pull from, even though today there's so many more black articles and so many more people populating the content that we take in, with that said, AI is still going to pull from all of the years where there wasn't content. There wasn't content. There was content that was that people of color wasn't being featured or honored. And so it's still going to skew that way. It's gonna take a long time for it to get right, I think. You know what I mean?

The Patient from Hell (34:13.548)
Oh yeah.

Ricki Fairley (34:13.77)
because of what's going in. It's like shit in, shit out. Sorry.

The Patient from Hell (34:18.341)
No, don't apologize. I think that's right. I think that's absolutely right. I think the amplification of bias, the amplification of racism, the amplification of, broadly, generalistically speaking, the darker side of humanity, I think happens. And I think

Ricki Fairley (34:33.482)
Yeah, but that's why we can't change that. I know I'm a badass. I can't change racism. I can't. I can't change illicit bias. But what we can do is educate black women. And that's what we do every day. And we have an HBCU internship program to educate these young women who are pretty much students. To say, here, how can you be a better doctor? It's getting a litte loud in here, but we educate women and say, here's what you need to know. Here's how you need to be the girl boss of your bodies.

Here are the questions you ask your doctor. Here is the kind of care you demand. And here's how you talk to people. And you can't, you have to own this. And help yourself. And that's what we teach people.

The Patient from Hell (35:13.321)
Ricki, I want you to talk about two things you just mentioned. One was briefly, you mentioned single moms in the Black community. And if I remember the stats, it's staggering as to how many.

Ricki Fairley (35:22.978)
73%, 73% single moms. It's huge.

The Patient from Hell (35:27.309)
So can you talk about how does that come to be and then how does it affect cancer, right? Because it's a very specific lens when you are a single mom going through treatment. I think that's super hard.

Ricki Fairley (35:40.65)
Yeah, and we, yeah, it's huge. I mean, we don't have a data point for the percent of single moms that have cancer. We don't have a data point, but we do know that, you know, that there, it's a huge number. And we know that they're the breadwinners for their family. And when they get sick, the household is at risk. Well, frankly, cancer is a disease, is a family disease, no matter who is in your family, right? Whether it's your kids, your married, whatever. But...

The Patient from Hell (36:04.609)
Yes.

Ricki Fairley (36:09.39)
Clearly, if you're the breadwinner for your family, you're the holder of the health insurance. So if you stop working, anybody could get sick and die, right? And so it's a huge thing. And we know that black women under 35 are getting breast cancer at twice the rate of white women and dying at three times the rate. So we have right now two patients we're talking to. They're 24 with metastatic triple negative breast cancer. We have the manager of our triple negative support group, Deltra.

She's 38, she has five kids. Five girls. Five girls, five girls. Metastatic triple negative breast cancer. And she's thriving, God bless her. But she got diagnosed at 34. And she's the norm. We have Latoya who's 39 and she got diagnosed at 36. She has three babies. There are three babies under seven when she got diagnosed. And she had stage 3B but.

Her doctor basically deprived her of one of our best drugs we have for triple negative, Keytruda. Just to be clear though, she's not a single mom. Oh, she's not. Yes, but she has a great, there's her husband. But I think the thing that, like the way you should get back into her story, cause it goes back to the DMV moment. But I think too, it sucks when you find out the story that like they became a single mom when they got diagnosed. Yes.

happens a lot. Yeah, that happens a lot. That's what's awful. Because I think about the toy. I mean, the toy husband how he's like, he's a part of I could talk to so many more men about yes, how to like, be a part of their lives and not bounce, right? Not bounce. But we do have a lot of men that bounce because it's a story that like, do or the women or the women leave their husbands because they're not feeling supported. You know, Delta left her husband with five girls and triple negative breast cancer metastatic.

The Patient from Hell (37:51.053)
Oh. Hmm.

Ricki Fairley (37:57.122)
So yeah, I shouldn't have brought Latoya up in that single long thing. But still, I think that, you know, we have to look at the impact on our families and look at the impact on our children and what's happening with them, even with their genetics or their family history, to help teach them. You know, we have Michelle. Michelle is married, I have two kids, but she's, you know, she has a seven-year-old daughter who's like a little badass. She actually interviewed me for her own little interview series.

But for her mom, but she interviewed her mom's doctor. She interviewed me. She has like all little YouTube channel of like videos that she's made, but it's a family disease and we have to rectify that and we have to help all women, but like the single women are really at risk. And most of them do have, you know, most black women have a matriarch, whether you're single or whatever, you have a matriarch or black women to take care of you. But still we met a woman last summer. She was 38, she had

stage 3b triple negative breast cancer, both her mom and her mom's sister also had triple negative breast cancer within the last two years and they never talked about it. They didn't know that each other had it, the sisters, until the daughter had it and the niece had it and they finally admitted it to each other. The family situations are insane. And I think too, like, when you mentioned single moms first too, I've been thinking this has been a, we've been talking to this conversation for a minute.

I have this herstory worksheet. I think it's great. It's pretty comprehensive of like, not just breast cancer, but diseases that like, could are risk for breast cancer. So prostate, ovarian cervical, hypertension, diabetes, colon, all of that. And it says like, here's, go through your mom's side and go through your dad's side. So I've always been conflicted with passing up this worksheet because that's not always what families look like anymore, right? You have so many different.

family structures. So I think about the LGBTQIA community who like might have not a relationship with their parents now. I think about people who are adopted. I think about the single mother, single father, anything in that space where you might not have access to your genetic history and if you're not, if you have a family that's not talking about health, right, you're really at a disadvantage to knowing your risk. So how do we, like it made me think like,

Ricki Fairley (40:15.486)
if you're adopted, you should get free genetic testing at age 18 or like whenever at age, but like that should be a norm, you know, cause like you should have access to your family history in some capacity. And so I think it's that twofold issue of like genetics, family history, herstory. Yeah, but like having, like knowing both those, but if you don't have access to them, both those, what do we do? Yeah. We met a woman last week that is adopted and she's really angry

about health. She works for NIH. And so she spent a couple of years looking for her birth parents. She found her birth mom about eight months ago, and her birth mom's family is riddled with breast cancers. Riddled. All at young ages. And so she immediately went and got herself checked out, but she's angry about the fact that no one could help her with that and that she had to go find herself and like how many women are in her situation.

The Patient from Hell (40:57.293)
Wow.

Ricki Fairley (41:10.838)
where she has so much breast cancer on her mother's side and she knows nothing about her father's side, but still just knowing about that just made her just mad. Oh my God, what do I have to do now? And she's trying to fix herself.

The Patient from Hell (41:23.949)
Hmm. Ricki and Hayley, you and I could talk honestly for hours, I'm almost certain. And we're talking about such complex, such nuanced aspects of black breast cancer that if you guys are up for it, I'd love to do part two and dive a little bit more deeper into some of the things you're doing because I think it's really important to talk about them because I'm not sure the broader breast cancer community hears it often enough. In fact, I'm almost sure.

Ricki Fairley (41:42.015)
Yeah, let's do it.

Ricki Fairley (41:49.738)
Yeah, we'd love to, you know, there's so many issues and there's so much work to do. And so many, you know, so it's like, okay, what mountain are we going to climb today? What are we going to tackle? And I think that we've worked really hard to be, I say that we're impatient about being iconic. And we are just in the community. And what Hayley's job was basically to take us where black women live, work, play, pray and slay, and we know that we have to meet them where they are and educate them with stuff that they've never heard of.

They might not have any idea of, but they need to know. So that's what we do. We'd love to do more. And it's fun to like have an audience – or like to speak to, like you just said, the broader cancer community, because I do think like the work we do in clinical trials can translate to all other cancer types. You know, like I think this issue that we're seeing in breasts is going to be an issue in other places as well, especially with regards to certain ethnicities, races, et cetera. Yeah.

The Patient from Hell (42:33.729)
Sure.

The Patient from Hell (42:42.533)
I feel very, I want to wrap this episode up with a question for you all. Because one of the things that I, we've talked about a lot of really, really difficult things today. And normally, not normally, there's no normal, but usually when we talk about these things, most people don't have a level of acceptance that I'm hearing from you. I see acceptance. It may not be the right word, but.

I just hear this like, this is reality, how do we make it better? And I would love for you to talk about how you get there because at least I, I am not that yet, I am definitely grappling with a lot of like, dah, like angsty energy. I'd love for you to talk about that because I think that's, I actually think it's essential to you guys showing up to be iconic because you're painting the future.

And I find that to be really cool. So I'd love you to talk about how you got there.

Ricki Fairley (43:43.382)
It's unacceptable. The data is just unacceptable. It's just unacceptable. I can't think of a better word. Her sister, she's an older sister, seven years older, she has three babies, so I work for them. My two daughters and my three grandbabies. They're three, four, and six. I don't want them to ever speak the words breast cancer, and I got about 10 years before they get boobs. So they're my purpose. I think about them all day. So my older daughter, her sister, just had a prophylactic mastectomy a month ago, two months ago

because we have a family history and no one can explain this to me. So let's cut the boobs off, it's the only way to get rid of it. But I don't know, I can't go to sleep at night knowing that there's an opportunity to change something. And I know we all do this work, we all can pat ourselves on the back and say, we helped somebody today, we hugged them, we took them to chemo, we fed them food, whatever. But until we change the science.

with conviction, with intention, until we change how we talk about it and think about it, with cultural agility, it's not gonna change. And the stuff that's been done in the past did not work. Show me where it worked. Why are we still working on cancer still? Why is it not fixed? We got a COVID vaccine, we fixed AIDS. Why isn't it fixed? And so I can't rest until it's fixed for my girls. I think it's just about being solution-oriented, you know what I mean? Which I think...

can come from a lot of different emotions, right? It could be acceptance, it could be anger, it could be whatever, right? And so whatever's driving you, continue to feel that and use it to be solution oriented. Cause I don't think it's a matter of like, there's one way to feel. It's more just like, what are you doing with it, with whatever feeling you're having to create change, to drive this mission, to, and keeping in the back of your mind that like, cancer is our enemy, nothing else, like not.

person that I met over there that was annoying or like not the travel that I have to do or the things like that. It's just like keeping in the back of my mind that cancer is. And check each other on that because sometimes you do get messily busy in the work. And like I'm the first one to check and be like, can't like clear the, like make sure it's stop. Cancer is our enemy. Focus on that because, and it's when you see people kind of lose sight of that you see people forgetting about the need, like, you know.

Ricki Fairley (46:08.35)
or just using those guidelines that we know don't work. That's when I feel like that happens, is when you just forget about the mission at hand, and that's like a life being saved.

The Patient from Hell (46:21.361)
On that note, you guys, I am so, so humbled that you took the time to do this. Truly, I'm walking away with a very different lens on Black Breast Cancer. And I am hopeful that people listening in will also have that shift, which I think is absolutely essential to telling a new story in the future. So thank you.

Ricki Fairley (46:39.982)
Thanks for having us. We'll come back whenever. Take care. Take care of yourself, my blesstie. You're my blesstie. You're our blesstie. We'll send you a t-shirt. We'll send you a blesstie t-shirt. Okay, thank you. Take care. Take care.

The Patient from Hell (46:42.261)
Done! Schedule it.