Why Black Data Matters in Clinical Trial Research

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We check records.

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All right. Welcome, everyone. Welcome. Welcome.

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Give it another few moments. Please tell us in the chat where you're joining us from today.

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Unknown
All right. Okay, sir. Hello, everyone. Welcome to today's webinar, Why Black Data Matters and Clinical Trial Research. I am Megan Claire Chase and I am Shares Breast Cancer program director and host of our Busy Life podcast Plus and a seven year invasive lobular breast cancer survivor. Now, before our fabulous speaker comes on the screen, I'd like to tell you a little bit about share.

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Unknown
We are a national nonprofit that supports, educates and empowers anyone diagnosed with breast or gynecology cancers and provides outreach to the general public about signs and symptoms because no one should have to face breast, ovarian, uterine, cervical or metastatic breast cancer alone. For more information about upcoming webinars, support groups podcast and our helplines, please visit our website at Share Cancer Support.

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Unknown
Now we have a few housekeeping reminders for you on call and they are all participants will be muted during this presentation, but our chat is enabled, so please feel free to chat. Right Comments engage with each other, but make sure that you select everyone when using the chat so we can all see. Now we will show a video and then get into some questions.

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Unknown
So please submit any questions through the Q&A section that is at the bottom of your screen. And remember that our fabulous speaker today is unable to give specific medical advice. So please keep your questions general in nature. And we also have closed captioning available. You can enable this feature by clicking on the live transcript button on the bottom of the screen and selecting as the subtitle option.

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Unknown
This webinar is being recorded and we'll share this recording in a few weeks with all of the registrants and it'll also be available on our website. So now I would like to turn the screen over to the fabulous Ricki Fairley. Hey, Megan. Claire, I love you. I love you, too. And you're looking fabulous today, as usual. All for you.

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Unknown
I'm so glad. It's great to be here. It's so great to be here. So I am the CEO and co-founder of Touch the Black Breast Cancer Alliance. I am a 12 year survivor of triple negative breast cancer. I had stage three diagnosed with stage three. I did a double mastectomy. I did six rounds of to see I did six weeks of radiation.

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Unknown
I became no evidence of disease. My doctors had come back in two months for a scan. I went back two months later with exactly a year to the date of my of my diagnosis, and they found five spots on my chest While in the PET scan, my doctor said, okay, Rikki, we have nothing for you. You need to get your affairs in order.

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Unknown
You have about two years to live. And I said, Well, I can't really die right now. I have a daughter at Dartmouth. I've got to pay tuition. So me and you and God, I've got to work this out. And so I went on Dr. Google, which is not a good thing to do. Right. And finally, on the third page of Dr. Google, I found the triple negative Breast Cancer Foundation.

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Unknown
And I called who's now one of my dear friend Hayley Bannerman, And she found me a death probably back then. There are about five doctors across the country that were actually researching triple negative breast cancer. And when I was Reiko Ragan, she was amazing and she put me on what was then experimental for ten Carboplatin in jumps. So that I mean, I did a lot more chemo and I didn't die and it's been 12 years, so this is my God job.

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Unknown
I know that God left me here to do this work and I've been fighting like a girl ever since then to to bring to advanced science. And I really you know, we have so many lovely, wonderful breast cancer advocacy organizations, probably because we're all women and we all take care of each other. But I felt like there was a void in advancing of science for black women.

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Unknown
And, you know, black women have a crazy mortality rate. We're getting breast cancer younger at later stages. At earlier ages. I had a support group the other day and I had two 2424 year old metastatic tnbc patients on my on my resume. And it's just it's disheartening to see that. So what we're finding now is that there's a there's a disconnect in terms of cancer research, because we now know that a black breast cancer cell looks different from a white breast cancer cells.

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Unknown
So the drugs that we have were never tested on black women. And so we're seeing this huge, you know, devoid of black mortality. Rates are higher and we're getting younger. We don't know why we're getting triple negative at three times the rate and we don't know why. So we need more science. So that's why I founded Touch. And so I spend every day working with the pharmaceutical companies that make our drugs that we take to find black women, you know, to basically get more black women into research and get them on to clinical trials.

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Unknown
And that's sort of how we came up with the black data matters mantra. So I guess we can start with the video. You went start with the video making clear and then we can talk some more about our campaign and I'll tell you more about it just kind of sets the stage. Yeah, that's a stage. Do you see this?

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Unknown
When we trial, we make a difference in breast cancer research. When we trial with Save Black Lives, When we trial, we defy the odds. When we trial, we do it for our sisters. When we trial, we do it for our daughters and our sons. When we trial, we set a new standard of care. I was diagnosed with metastatic breast cancer.

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Unknown
I was diagnosed with triple negative breast cancer. At 19 years old, I was diagnosed with metastatic breast cancer at 38. All you hear is cancer, cancer, cancer. You never think about what the doctor's saying. Then the doctor looked at me and he said, Did you hear what I said? And I said, Yeah, but I don't know how to be a breast cancer patient.

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Unknown
The numbers for black women are devastating. Black women have a 41% higher mortality rate than white women. Black women have a 39% higher recurrence rate than white women. Black women get triple negative breast cancer, the worst one at three times the rate of white women. So we're getting breast cancer. Younger at later stages and earlier ages. And it's just devastating.

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Unknown
It's unacceptable. I know my grandma had it and she beat it. And so I just knew that I was going to be me as well. So I think then my fight started was when I realized, okay, I'm up for the fight for my life. So she said, Well, you know, I got this good clinical trial. You can go on as a second phase.

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Unknown
And she said, I think it'll work for you. But the first thing I asked her was like, Am I going to be a guinea pig? You know, because of our, you know, history with the black culture Over the years, clinical trials for many African-Americans have been hocus pocus. So, you know, we know about Tuskegee. And Henrietta Lacks clinical trial is no longer a dirty word.

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Unknown
It is. It's a halo opportunity. It's a message from God. It's an opportunity for you to live past this moment. But we need to get more African-Americans into clinical trials because we are dying at alarming rates and we have to stop this. We really do. And right now there's only a 3% participation rate in clinical trials. And so even the drugs that we're making now, there's no black bodies being tested as we built when we trial.

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Unknown
We tried really hard to make it for breasts by breast about prejudice so people could see themselves in what we're doing. Clinical trials are important. This is top notch research that we need to have as a black community. It's like the butterfly effect. We all got to help each other out. And one way to get to the ultimate end goal and I think the onus is on us that are cancers survivors to tell the story and the least we could do is be on a trial.

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Unknown
But how about for your children and for your children's children? We got to do this thing. We got to save lives. It's just that important. I get emotional every time. I know foul ball does it to you every time I've been. I know she gets me every time I've said so many times, But so we built this campaign based on a research study with the world.

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Unknown
So three years ago, you know, I'm a marketing person by trade, big player. And so I wanted to understand what's in the head of the patient. Right. And we learned very quickly that, first of all, the reason why black women don't participate in trials is because doctors don't invite them. Hello? Right. And so Dr. John, invite them for a bunch of reasons racism, implicit bias, whatever you want to call it.

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Unknown
They don't want to lose their patients. Whatever. Right. And so but secondly, we learned that they really don't understand what a clinical trial is. And so as I was talking to a few minutes ago, our dear friend Jersey Breast, you bless New Jersey, she passed last December, but she was my moment in the focus groups because she said, Ricky, I would never do a clinical trial because you're going to get the sugar pill and die.

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Unknown
Nobody should do a clinical trial. It's going to get the sugar pill like that. And it hit me at that moment that guys are blessed. These don't even understand what clinical trials are, how they work, how the science works, and they think there's a placebo drug. And in cancer research there is no placebo drug. There is no sugar pill.

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Unknown
You're going to get standard of care, but people just don't know that. What does that mean? You're going to get a drug that's already available on the market, that's been tested and approved by the FDA and people are taking and maybe there's something on top of it or a new drug altogether. And it's frankly the science of tomorrow.

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Unknown
You're taking a drug. It's the best science we have for our disease, and you're getting it today, what you get tomorrow and you get a better quality of care. And we know that research shows that you have better outcomes from a clinical trial because you're getting more closely monitored. You've got a whole team of people versus your one oncologist and their nurse monitoring you.

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Unknown
They're getting more scans. So think about it. If you are a new policy and you've started a chemo routine, you're probably not going to get scanned for three months. So you will sit in that chemo chair every week or every other week for three months, and then you got a scan. my goodness, it's not working. You progression in a clinical trial.

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Unknown
You're going to get scans more frequently. You're going to have more more blood tests, more more bloodwork, more skip more everything, checking and a whole team of people monitoring you. So if you do have progression, you can act on it immediately and so you're really getting better care. But our IS didn't know that and a lot of them still don't know that those basic things that I learned that I could convince a black woman to do a trial in 5 minutes with a simple message.

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Unknown
You know that ad bill you took last week, it was in the clinical trial like, well, really, you know that heart I gave my dog, Harper. We're going to clinical trial. The dogs that you give, you gave your kidney. We're in a clinical trial. And they're like, Really? But people had no understanding of what a clinical trial is that it's really a good thing.

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Unknown
And I think historically people want to sort of blame it on the Henrietta Lacks and the syphilis study and how black people have been mistreated. And those are all out there as a cloud kind of in the air. But those things have been handled. They're taken care of by the government. There's so many rules around clinical trials now.

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Unknown
You really are protected and you really are in a safer, more more protected, more precious environment where people are taking care of you and giving you the best care you can get. So so we now, you know, we said, okay, how can we take all the learning that we've been in the research and all these insights and build it into something that would communicate the benefits?

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Unknown
And that's how we got to the video. So we now have about eight of those videos, eight or nine of those videos. So there's a video for each person that you saw in the video. And we have and we have a video gallery on the website. So if you go to one, we trial that org and click on Video Gallery.

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Unknown
You can see everybody's story and that's in that set. And we have a whole nother set of other stories like we have a great video with Karen Peterson talking about, you know, Karen she's one of you know, she's a she's American like me, you know, and she's metastatic and came out of it. And she was like the first person to sign up for our trial.

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Unknown
And she's living and thriving. So I think she's six years out now and she was given no chance like, no, no, like me to your live or something ridiculous like that. So so we just really wanted to break it down and what we're what we're finding is that if you break it down and give the message from a blessing or the voice of trust, right.

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Unknown
Not a doctor, not a scientist, not a pharma company, but from our personal experience, we can convince women to sign up. And frankly, we don't want to die, you know, and this is the best science we have. And, you know, I think also historically, science has been science pharma's approach to science. They have these things called the informed consent.

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Unknown
These horrible 40 page documents that have words that you can't spell, you can't understand a word of it, and you give that to a patient. You scare that scared to death. Right? So, so so now we're working with pharma to change that language and change it and put in words you can spell and and make the materials that people have to read more amenable and more easier to have to digest and understand.

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Unknown
And so that's one of the things we're doing. We're also providing a nurse navigator for the process. So we're working now with on probably I think more one on seven trials now, specific trials, and we're working with three pharma companies where we help design the materials for recruiting, but we provide our 24 seven nurse navigator hotline. And so so we have value.

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Unknown
So when the doctor's office calls up five, you can call Val and she'll talk to you off the ledge. And that's what happens. And we get we get a lot of calls after dinner. So the doctor's office is now closed. The patient has had something happen that day. She went to chemo, She has a headache, whatever, whatever. She sits at dinner with her family.

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Unknown
And our friend was like, well, so what happened? And explain to me? And she can't. So they call us out and Val talks them up the leg. She explains the informed consent to the husband, the daughter, the mom of the lady, whoever wants to know about it. Because guess what? They think that you're going to get the sugar pill.

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Unknown
And I do. So. So. So we explain to the family and we basically provide non medical care. So, gosh, if you need something in your neighborhood that will find it for you, like, you know, maybe you should take a yoga class or maybe you should go to health. So let me find it for you. And so we find resources for people where they are and support them with navigation, you know, through the trial.

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Unknown
So they'll stay in it, so they'll stay in it. So that's something that we just started doing and it's really paying off a lot. We also do a lot of coaching tips, so we're now working with 95 and it's explaining to them stuff like, you know, do you have a black nurse in your office? Do you have a Latina nurse in your office?

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Unknown
Do you have somebody that looks like me in your office? They don't a lot of the time and but they never thought of that before. So. So you're not making our people feel comfortable when they come to you. So we're just trying to change how people think about research and and for a for a pharma company and even for the P.I., they think of science.

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Unknown
But as patients, what do we think about We think about another birthday, a grandbaby being born, a wedding coming up, a college graduation like me for my daughter, a sunrise, a vacation. We're thinking about time. How can you give me more time? And so we have to change how doctors and the researchers think about what's what our what our perspective is.

00:17:57:16 - 00:18:16:23
Unknown
And so, Savannah, I actually just shot these videos. I think we're going to come out with three more videos explaining clinical trials, how I just explained it to you guys. But also so now what happens often if a patient sort of entertaining the concept of a trial, she's talking to her doctor. The doctor then leaves the room to go get the trial nurse for the trial person.

00:18:17:00 - 00:18:34:10
Unknown
So while they're gone, we're made a video that they can reach on a QR code. So the doctor will say, Here's a QR code, Check out this video. And it's basically just me and about talking like I'm talking with you right now. Here's what a clinical trial is. Here's why you should do it and here's how we're going to support you with navigation through the process.

00:18:34:12 - 00:18:54:03
Unknown
And they can interact with us live on a video without, you know, before they even have to think about the trial details. So just we could warm them up, make them feel comfortable and give them a hug, you know, to think about the science. So and that's what's missing. The hug is missing because we're not doing it because we're a molecule or guinea pig or whatever.

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Unknown
We're doing it because we want to win more time. We want our cancer to go away if possible. But also, you know, we're not you know, I don't want people to think that you're a guinea pig and it's a last resort. It's not a last resort. It's the best science we have. And when you start talking about lobular breast cancer like Megan Claire had and triple negative breast cancer like I had, and being a younger person that we don't know why you're 24 and you have metastatic breast cancer, a clinical trial should be a first option for you.

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Unknown
It should be in the set of therapies that the doctor offers you from day one off the cuff, because it's the best science we have. It's medicine of tomorrow. And by the time it gets to a patient, all the bugs have been gotten out about safety. So there's nothing unsafe about it, right? They go through a couple of phases of trials, of testing before you even get to a person.

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Unknown
So by the time it gets to you, we're now testing the efficacy and how efficacious it is relative to some of the drug on the market. So it's totally safe and it's totally a great space to be, especially if you're young, especially if you're, you know, you have one of these rare cancers. So it's really important to to think about trials of something.

00:20:08:24 - 00:20:31:11
Unknown
And we don't have block data and make it clear and I were talking before we got online about some of the side effects that we both have had and they were really from probably from Adria Madison, you know, the red devil that we all took, right? The red devil. But you know, before when we did our research, we actually went back in history and I believe age remission was made sometime maybe late seventies, early eighties.

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Unknown
But there were no black women in those trials. There were no Latinas in those trials. There were no women of color in those trials. So so when we start to get black fingernails or like the black tongues or all the things that are neuropathy after the first session, it's because they don't know. Nobody knows have a science because no one no one has tested it on our bodies.

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Unknown
We're also trying to get some of the companies that are coming out with newer drugs, and they didn't have black women in the trials with 3% participation to check do real world data. But first, let's look at real world data. So drugs like KEYTRUDA, which are changing the landscape for triple negative, it's a great drug. So let's do a study about how is it performing with black women, how is it performing with Latinas?

00:21:18:04 - 00:21:41:21
Unknown
So you didn't have it in the trial? We think it's good. If I could go back and say, Hey, take you through, because these many women are this percent of women did better on that drug, it would be a great thing. So we're having those conversations with pharma as well to say we need more data, we need more information, we need for you to track this stuff and help us figure this out so we have a story to tell so we can help more people.

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Unknown
So that's kind of, you know, the focus of our, you know, a lot of our mission. But, you know, every day I'm a pain in the ass and I tell somebody that their baby is ugly. But but I feel like I have to do that. This is my catch. I'll give you a hug. But I but I do feel like we're getting a seat at the table.

00:21:59:22 - 00:22:22:09
Unknown
And I'm I know that our and I think you guys saw that with your tnbc study that that our pharma partners are really supporting these conversations and supporting this research and supporting this understanding for us that, you know, I don't want anyone to die of breast cancer, but I really just want mortality rate parity for black women and I want mortality rate parity parity for Latina women.

00:22:22:09 - 00:22:43:08
Unknown
I want us to be able I want to make breast cancer. If we can't get rid of it, can it be a chronic disease? But we need more science. And frankly, we're only going to get more science by getting more of us, more of our bodies in the study. So I want people to feel educated and empowered so they can do this work with us because we can't do it alone.

00:22:43:10 - 00:23:02:08
Unknown
And, you know, it's we're fighting kind of an uphill battle because we live in a world of health inequity. We don't have health equity, and we're not going to have it until I when everybody when I say everybody should do is practice the golden rule, which your mother taught you when you were two years old, treat others as you want to be treated.

00:23:02:10 - 00:23:30:24
Unknown
So when you get that treatment plan from your doctor, you know, you go back and say what you would recommend for your momma, your auntie, your grandma, your daughter, because if it's not good enough for them and you're putting them in a trial and not me, it's not good enough for me. So we're trying to educate women and and just help them feel good about not being dismissed by doctors, not being not offered a trial, but demanding the care that we deserve, as all women deserve.

00:23:30:24 - 00:23:48:01
Unknown
So it's all important. You got to put your big girl panties on and be the girlboss of your body because we're not getting the care we deserve and we have to fight for ourselves and ask for it because there is going to be a way out of this. And I have confidence in that. I know we're going to have a way out of this.

00:23:48:03 - 00:24:11:08
Unknown
You know, I have three grandbabies. They're now three, four and six. And I got ten years of where they get boobs to get rid of breast cancer. Their mom, my oldest daughter, she's had a prophylactic mastectomy. Guess what? Because I don't have any mutations. I don't have Broca, but I have three generations of breast cancer on my mom's side, and I have three generations of other cancers on my dad's side.

00:24:11:10 - 00:24:30:19
Unknown
And so the fact that we don't have back up because we don't know about black women, how many black women need bras, whatever, because we have a family history. I took you know, we said we're going to make our own data. We're going to make our own data story because this is not right. So a man is going to prevent this from happening by by having no boobs, having no breast tissue.

00:24:30:21 - 00:24:53:02
Unknown
And so, you know, hopefully we'll get to the point where we do have data about that. But right now, we don't I know somewhere in science there's a there's a gene that black women that's causing triple negative and black women. And we have some studies about that from Ghana. There's a gene called the WG that we don't test for in the States, but we can't wait for that data to happen without participating and making decisions for ourselves.

00:24:53:04 - 00:25:20:21
Unknown
So I have to keep going. I mean, Ricky, you have said a word. Am I going to mean, you know, so I am one of those that I used to be totally against clinical trials because of the history, you know, But you really see the Bear, Huskey and Henrietta and all of that. And I was like, heck no woman ever did a clinical trial.

00:25:20:21 - 00:25:38:18
Unknown
No way. Then I get diagnosed with invasive globular breast cancer, and then, you know, when I'm told, well, 15, you know, 20% of women have it. And then I was like, well, how many black women have it? And now I can answer me. And I was like, okay, So it's like, you know, I'll put that in the back of my mind.

00:25:38:18 - 00:25:59:01
Unknown
Who's right now? I just got to get through what I need to get through. But then when it was time for me to enter the survivorship stage and I was given, you know, the treatment options to try and help, right? The recurrence, I had these rare side effects and some side effects that had not been reported with that medication.

00:25:59:01 - 00:26:22:12
Unknown
And that's when it clicked. I was like, my gosh, now I understand, right? Clinical trials. I don't know. And why it's so important that people who look like us are part of that, because I kept being dismissed. Yeah, that's right. That's not true. That. And I'm like, Yeah, that's right, it is. And we don't they don't know that.

00:26:22:13 - 00:26:39:06
Unknown
I mean, there's so many things that we don't know and we're finding out as patients, right? So, so we have to get in the studies as much as I can. And you know, you know, make clear there's lots of studies, not just drugs, like I've done about eight studies now, like I did one to measure the things I put on my body.

00:26:39:08 - 00:26:56:16
Unknown
One of the things that I wore these bracelets for, to watch what's going on, my body within my environment. I did a study on stress on like how stress how you how you were impacted by stress that cause triple negative. And so there's all kinds of studies and we have a portal on our website for breast cancer trials.

00:26:56:18 - 00:27:17:07
Unknown
So the other the other bad thing is that whole clinicaltrials.gov is like going to have like going to hell blindfolded. It's a horrible place. So that's why we we built a portal on our page on when we tried that or so we basically put a hug around it. And so now we can track what happens to women when they go and what disease they have and where they get stuck.

00:27:17:09 - 00:27:34:10
Unknown
And so it helps you navigate the whole trial system when you're looking for one to get the match that you and and we're happy to help you even coach you through that and make it easy because sometimes they'll just throw it here. Go look at this website. You're never go find the website. So how do we do it?

00:27:34:10 - 00:28:15:22
Unknown
In a nicer way with a hug, with information. We have an 800 number you can call as you're going through the process to help you find the trial for you. So whether it's drugs or behavior and that is so key, right? Because as as we think about how that website, how Web website is designed, is really crucial. And then your even doctors and other researchers are like, yeah, we don't even know really how to read it, but we know that information in there like it's good, but it just has to be broken down in a in a way that can resonate and we can understand what what is that clinical trial about?

00:28:15:24 - 00:28:33:16
Unknown
Yeah, and what's in it for me. So you go in and you put in, I have this kind of breast cancer, I'm in this stage, I've taken these drugs and you put in all your information that you know, right. And, and it'll match a match, give you a match before you have to go through. You know, even the names of the trials are crazy.

00:28:33:16 - 00:28:57:09
Unknown
So we're just trying to make everything easier, make everything with words you can spell, you know, make everything change how and change how people present stuff to us and also give us some control so we can go to our doctrine and say, hold on, wait a minute, this is what I want, or find this for me or be more demanding.

00:28:57:11 - 00:29:23:03
Unknown
Our research study also showed not only were doctors not inviting women to trials, but even when the patient brought up a child to the doctor, like brought up the conversation, she still walked away feeling ill equipped to make a decision. And then she goes home to her mom, who says You're going to have trouble. And she can't defend herself to her family because the doctor still didn't spend enough time with them explaining the science, explaining what was going to happen.

00:29:23:05 - 00:29:50:13
Unknown
And so we have to do that work, you know, and we as blessed if we have to do that work. So this is my job and this is how we have to talk about it and shake people up and say, I need you to talk about it differently, you know, So, you know, Ricky and everyone, we're getting into a Q&A portion here and we do have some questions that were submitted and some I'm sure, sure, we'll get those shortly.

00:29:50:13 - 00:30:21:10
Unknown
But what I want to kick it off with, when you first started, you know, when we trial, like what were the barriers that you were hitting and and how did you get through that to get to where Lilly trial is now and being able to go across the country, you know, educating the black community about clinical trials. So you know it there weren't any barriers or if there were, I didn't see them and maybe that's what it was.

00:30:21:12 - 00:30:43:06
Unknown
So, I mean, it's all God. It's all God how he did this. But I felt like no one could answer my questions so they couldn't say no. He knew. Right. And so when I went to him and said, I need a lot of money here to do this work, and they would say, Well, why all of that? Because black women have a 41% higher mortality rate.

00:30:43:08 - 00:31:06:03
Unknown
Black men. You know, I but I was back. And so when I said, what are your drugs working on black women? Well, we don't know. How many do you have in your trial? Well, maybe one or two. And so when I started asking the questions, they couldn't answer me. So they couldn't say no. Right. I kind of position it so in a way that I couldn't take no for an answer.

00:31:06:03 - 00:31:26:10
Unknown
And I don't I don't believe in No, it's always right, you know, But but I just said I just said, you show me, you show me what you are doing to contribute either to the bad numbers of the good numbers or what are you what are you doing? Pharma? What are you doing, doctors, What are you doing? People with money or people with resources?

00:31:26:12 - 00:31:45:18
Unknown
Tell me what you got. What's working? Is it working for you? Because if it's not working for you, then you better. We got to work something out here. And that's how I got the money. I mean, I got money to do this work, but I but it was basically because there is no answer, because to me, breast cancer right now is in a crisis situation for black women.

00:31:45:19 - 00:32:12:09
Unknown
It is a crisis. When you say a 41% higher mortality rate, a 39% higher recurrence rate. Right. Black women under 35 get breast cancer twice, three times, three times the rate of white women before it, well before they would have that first mammogram. There are no screening guidelines for black women. With the new guidelines we have, when you start to look at all those things and line them up, no one has an answer for that.

00:32:12:09 - 00:32:38:01
Unknown
And frankly, everybody in this ecosystem needs to play a role. The doctors, the scientists, the pharma people, whoever, anybody who has a can touch the word breast cancer in any capacity needs to be responsible and accountable for these horrible numbers. And that's the kind of attention we deserve. And, you know, we don't we don't deserve anything less. And so I didn't let anything rain on my parade.

00:32:38:01 - 00:32:55:05
Unknown
Obviously, you could see that. I didn't I didn't take. No. And I said, well, you know, and even now I feel like I go to all that, you know, I get the Google alert every day. But we need more diversity in clinical trials and everybody's top can talk and talk and talk and talk and talk and but nobody's walking the walk.

00:32:55:07 - 00:33:19:12
Unknown
And I can now say that in the two years that when we trial has been in the in the world, we've signed up 17,468 black women for clinical trials as of yesterday. What see that number and see that number again, 17,468 black women in the clinical trial portal. So I'm very proud of that. And but you know what, Meckler It's not enough.

00:33:19:16 - 00:33:46:05
Unknown
It's not enough. But but so now when I talk to pharma and talk to people who are supporting us, I can say, well, you know, what we did is we got can you can you beat that me? And frankly, I wish everyone would just use our tools there on our website. They're free. If you want to convince a black man to do a trial, show a video to one of our videos, use our tools.

00:33:46:05 - 00:34:21:19
Unknown
I wish. And you know, part of even the analysis that we did was we looked at all of the breast cancer major breast cancer organizations, what they were the words on their websites about clinical trials. Go read them. Go read what comments says, I love you share. But go read what you guys have about clinical trials. And and if you look at the words that you're telling people to explain the science and explain this to them thoroughly work and that really work and you could put a link to when we trial and get all the stuff be a lot easier for trying to write something that's not going to work, right?

00:34:21:19 - 00:34:46:21
Unknown
So we don't work and and we're just going to keep more of it. The other really crazy thing too, So I went back to the FDA. So this number, this black men are 3% participation in clinical trials for breast cancer. So I've now talked to ten people at the FDA saying, okay, what does that 3% mean? Because I wanted to see how my 17,000 what it's relative to what's going to take them or move the needle right.

00:34:46:23 - 00:35:08:08
Unknown
So what is the sort of the numerator and denominator of that fraction to get to that 3%? What are those raw numbers? Nobody could tell me. Nobody could come. And frankly, I learned about three months ago that the FDA, if keeping been tracking that number anymore, but they know it. And the people I've spoken to, the people who work in clinical trials at the FDA cannot explain that 3% to me.

00:35:08:08 - 00:35:32:20
Unknown
So so to me, like, how do I move that needle from 3 to 4, from 3 to 10, from 3 to 40? Right. And frankly, the clinical trial participation rate needs to be commensurate with the burden of disease. So if triple negative breast cancer, if black women get at three times the rate of white women, I'm not from out of that math, but that's the numbers that need to be reflected in the trial participation.

00:35:32:22 - 00:35:49:22
Unknown
And so so no one's even measuring it any more. So I have to measure it. I have to measure something. And so that's what we measure, you know, people coming into our portal and now we can help those people in our portal. We built our own portal so I can talk to them and see them and encourage them and see where they get stuck.

00:35:49:24 - 00:36:16:24
Unknown
Who? Ricky, I am again in prison. Yeah. I got to get into some questions here. Okay. So should someone who is not in active treatment join a clinical trial? Like, aren't there? Yeah. Trials for survivors. Yeah. Yeah. Call me. I'll get you one. I'm Georgetown, and DC has a lot of trials. Those are the ones that I do.

00:36:16:24 - 00:36:39:13
Unknown
I like part of this plan where they if they have a trial, any kind of trial, they call me. I'm on this list. And I'm sure a lot of cancer centers have those kinds of trials. So you can do trials for all kinds of things hair loss, weight loss, diet, like they're measuring all the things. And frankly, anything we can do to learn about black women, we need to learn whether it's whatever it is.

00:36:39:13 - 00:37:05:04
Unknown
So, for example, answering your questions. But you know that the standard of care thing like that up a double mastectomy, double mastectomy is equivalent to radiation and a lumpectomy. Have you heard that? You'll get it. It's going to be fine. There's no difference. So where was that study conducted? Sweden. Sweden. So how many black women were in that trial?

00:37:05:06 - 00:37:27:11
Unknown
Yeah, that's right. There are blind boys. So. And I love these people, but. So I don't feel like that's a good therapy for a doctor to recommend to a black woman. And I have been thrown out of a few doctors offices because I brought that up. But but. But I will ask a doctor in a heartbeat what you're recommending to me.

00:37:27:16 - 00:37:46:04
Unknown
How have your black patients fared with your personal experience as an oncologist? How are your black patients doing with unmet therapy or with this drug or with whatever you ask the question and you know, you kind of throw them off guard. And if I were your kid or your mama, what would you do? What would you do if you were black?

00:37:46:06 - 00:38:16:07
Unknown
What would you do if you were black or Latina or whatever, and throw it in their face And, you know, they don't love that. But I don't really care because it's about my life and your life and our lives. So I'm being asked, what is the one 800 number for clinical trials? Is there? yeah, yeah. So if you if you go into our portal and start the process of finding a trial, but you get stuck, there's a number in there.

00:38:16:07 - 00:38:34:21
Unknown
I don't know what it is. I can find it for you but, but there's a number in the, in the once you're in the portal, when you're, if you're, it can kind of tell you that you're struggling or need help and then it'll pop up and show you who to call. And it's when we trialed ecom, right, that org when got all that every child born.

00:38:34:23 - 00:39:08:13
Unknown
Thank you Michelle when we trial dot org Michelle said just go there and see what that number is. Check out the video gallery and you can go in there and it'll say search trial. So if you go into the search trial button, it'll take you into the portal. Perfect. So, you know, when we think of clinical trials and I know we've talked about triple negative breast cancer, are you seeing like clinical trials where it's for DCIS in black women, you know, lobular and black women?

00:39:08:13 - 00:39:41:15
Unknown
Like how how are you determining like where I guess the growth of clinical trials are going per subtype? So, you know what, I can't really tell you by subtype. I mean, frankly, most of the trials should be for metastatic breast cancer because it kills you. Right. But but, but there are trials. So, for example, like drugs, like like KEYTRUDA, which has been a miracle cure for triple negative, first came on the market, first was approved by the FDA for metastatic.

00:39:41:17 - 00:40:03:22
Unknown
But they very quickly like within like I think several months were able to get FDA approval for early stage, which is great. Which is great because I want to benefit they don't have to be Trudell be right now the other really great drug for triple negative breast cancer it's a third line metastatic drug. It's made by Gilead. So they actually have a bunch of trials for early stage.

00:40:03:24 - 00:40:27:19
Unknown
So to try to get that drug approved for stage triple negative breast cancer since we only have one. And so there are all stages, all subtypes. There's there's a lot a lot of trials for her too. There's a lot of trials for really every subtype. And frankly, black women die more readily of breast cancer at any stage, any age, fear included at any age, any subtype.

00:40:27:21 - 00:40:50:21
Unknown
So we need research across the board. Frankly, we know all know that early detection or getting breast cancer before stage two your is curable. Right. And so your odds of dying are significantly less. So clearly, it would be great to have drugs for that stage to prevent you from that you get from illness. But we need all the drugs, all the stages, all the subtypes, and they're all out there.

00:40:50:22 - 00:41:16:19
Unknown
There's there's trials, a lot of trials for everything. And we're happy to help you find one, you know, We're happy to help you find one. Well, I mean, and you also brought up another good point of genetic testing and then clinical trials because, you know, when, when I got genetic testing and they told me, you know, I had an unknown variant and I was like, well, what does that mean?

00:41:16:19 - 00:41:44:12
Unknown
They're like, we don't like what you're doing now. And then I and as you said earlier, you were like, Yeah, they'll it didn't show. I had a Raka mutation. It's like we don't know what the other mutations are that would do that for women. And so like what do you say when you're out in the communities and a black woman asks you that question, well why should I even bother with genetic testing anyway?

00:41:44:12 - 00:42:06:13
Unknown
And why should I even bother if I am not going to be included or still not going to be included? Well, you want to know because first of all, it can dictate the types of drugs you take. Genomic engine, I mean genetic genetic tension on the testing. But frankly, with black people, family history is equivalent to your genetics almost.

00:42:06:15 - 00:42:34:04
Unknown
Right. So I don't have brother, but I have a huge family history. So that's my daughter kind of gets cut off right? So you have to know your her within know your her. So we actually have a really cool fat worksheet on our love of my girl site that helps you sit down with your momma and your grandma on both sides of the family and fill in all the stuff for really all the black diseases, kidney disease, diabetes and all the blood cancers, lung, prostate, whatever.

00:42:34:06 - 00:43:00:07
Unknown
So we want to foster those conversations in black households. And it's really important to know where you came from because it could dictate anything, because there actually is a study happening right now where colon cancer in my dad led to triple negative in the daughter. Hello. That's me. So there's Summit. We've none of this research we have, so anything is good.

00:43:00:07 - 00:43:27:10
Unknown
Anything is good. But. But the family history and, you know, black people, we don't talk about health at the kitchen table until Uncle Pookie gets his leg amputated or Grandma Edith is in hospice. How'd that happen? Right, Because we don't talk about it. So we're trying to foster those conversations. So we have an HBCU internship program, and they're these lovely, lovely botanical young women, juniors and seniors at black colleges.

00:43:27:12 - 00:44:01:20
Unknown
They're pre-med and they work on our our Tick-Tock. I've never been on TikTok. I can't tell you what they do, but I've been out of that. But they make these amazing videos and their role is to be the conduit in their family to foster these conversations that we pay them for. It's a paid internship. They make videos for each for their peers, but we ask them to sit down with their both grandmothers or their momma and relatives and talk about cancer and talk about breast cancer and talk about breast health because of black breast cancers.

00:44:01:20 - 00:44:31:09
Unknown
I think black breast health is a thing. So learn your risk and know your herstory. So we but we basically challenge them to be the hero of their family. You be the one at the family reunion that stands up. Nobody can eat until the chicken, until you we talk about history and and to foster these conversations the the the ad council did a study a few years ago and it said 92% of black women are aware of breast cancer, probably even higher now.

00:44:31:11 - 00:45:06:24
Unknown
25% actually talk about it with their friends and family, 17% act on the risk. Wow. Scary, right? Yeah. so we ought to be talking about this more. And and I hate like the woman that was on your at the share panel, the B.S. study. Look at that woman. She was 38, right? 38 with CNBC was I think her stage three or three, three B or C, and her mom and her aunt had triple negative and they never talked about it, you know?

00:45:06:24 - 00:45:28:16
Unknown
Yeah. Yeah. And she didn't know their momma had a tissue was sick in that crazy. But that's the secrets that we are keeping are killing us. And so we have to make this cancer thing, not that c thing that you whisper about, but something that you know, who doesn't have a cancer story in their life, whether it's a friend of somebody you know, right, Right.

00:45:28:17 - 00:45:49:10
Unknown
It's an it and we're getting it younger. Like, look, you know, every cancer, we're getting younger, you know, and colon and all the you know, they're getting them younger so well before you would screen. So we got to talk about it as much as possible. And genetic testing as part of genetic testing is critical, but it's even only part of the conversation.

00:45:49:12 - 00:46:20:21
Unknown
True. And I did see a question. Can you still be tested for that? Can you still get genetic testing post-treatment? yeah, for sure. Yes, yes, yes. In fact, we just had a podcast episode. So if you go to share cancer support in our Busy Life podcast where I talked with a genetic counselor and it is important, especially the further you get out in your survivorship.

00:46:20:21 - 00:46:45:12
Unknown
Yeah, like, like, like even my breast cancer surgeon recommended to me last year. Okay, I'll and I will do it. I will do it. But to get another genetic genetic testing with a broader panel. Yeah. You know, and extension. Yeah. Like so have you done that. Is that something that you were encouraged. Encouraged? Yeah. Yeah, I bet you do.

00:46:45:13 - 00:47:02:05
Unknown
Yeah. Yeah, I've done, I've done two different panels. One when I was sick and I did one a couple of years ago and finally when I finished it, one of my doctor called me with the results. I said, Well, what I get is like, is that a good thing? I have no genetic mutations like or who knows, because we just heard about the Duffy gene.

00:47:02:05 - 00:47:23:16
Unknown
But my my Dartmouth roommate, she had breast cancer a year after I did. And so now 11 years ago. And so her doctor retired. So she went in for a checkup this is two years ago. She went in for a checkup. So now she's like eight years out. And her new doctor, a new doctor, said, hey, did you have genetic testing?

00:47:23:18 - 00:47:46:05
Unknown
And she said, No, look, that. And it's funny because ten years ago I didn't even know enough about genetic testing to ask the question for how to help her. Right. Because I was still fresh in it. And so she had rashes back up and she's gotten a son. So she actually had her ovaries removed two years ago. And so, you know, she's eight years out.

00:47:46:05 - 00:48:09:05
Unknown
But thank God that doctor had the wherewithal to ask her to do it. And she had Broca. She has Broca. And so now her daughter, who's 25, is being screened. But had that not happen and also football for you, but it's for your kids and your family like my you know, my daughter had the benefit of me to get to know they had to get a prophylactic mastectomy.

00:48:09:05 - 00:48:33:16
Unknown
But how many families don't know that? Right. Right. So it's paying it forward to you know, And so let me ask you this. When you've been in a clinical trial and and talked with other black patients who have been in clinical trials, how did they deal with that anxiety? Because, yes, it's like you've gotten them to sign up.

00:48:33:16 - 00:48:53:02
Unknown
How or how are you working toward making sure they actually, like get there and and take part in the clinical trial? And of course, there's always you know, you can stop at any time. That is your right that might help them get over that anxiety of like, okay, now I've signed up for this. Okay, I got to show up to that first appointment.

00:48:53:04 - 00:49:21:01
Unknown
So frankly, you're in a clinical trial every time you do any chemo. Think about that. Right? So when you went to sign up to take your red devil treatment, you didn't know what's going to happen to your body. Right? Right. There's some data from other people having that experience. But frankly, you had different side effects anyway. So every time we do any treatment as women, as black women, we're in a clinical trial because you never put that stuff in your body, Right?

00:49:21:03 - 00:49:45:08
Unknown
So it's not it's really no different from a treatment and you're going to either treat your cancer or not, right? So I would think about it that way. But I also, you know, again, it's the best science we have. You're getting tomorrow's drugs today. You are saving yourself, you're saving yourself, you're saving your life. And you're and you're giving yourself more time and you have the power to do that.

00:49:45:10 - 00:50:10:04
Unknown
So why wouldn't you exercise that power? Do you have any When we trial record, like, were there locations? Like are you looking to like have chapters of when we trial across the country and have different sites to like sign people up. I mean, you could say that. So we like to say the last year we did 70 events.

00:50:10:06 - 00:50:33:07
Unknown
We've done 20 already this year all over the country. I don't feed my bed a lot, but we like to say we go where black women live, work, play, pray and play, and we don't go to health events. We go to hair shows and churches and and we do go to all the sorority and drinks and Jack and Jill and all the black women's organization events.

00:50:33:09 - 00:50:54:23
Unknown
But we try to go into the community where we can talk to women when they're not thinking about health and catch them off guard. And I like to call it making intervention. So we do something crazy. So when they walk away from us, they remember us. So like we went to Essence Fest last year and we we took over the the alleyway by the casino that everybody has to sort of walk through to get to the town.

00:50:55:00 - 00:51:10:16
Unknown
And we put out a big dance floor. I had a deejay and blasting music and danced. And Pink Tutu is a big thing, and I've had at least ten people call me from getting something in that bag that we gave them. You know, my mom had breast cancer. My daughter. I found this bag from the thing you did, whatever.

00:51:10:17 - 00:51:32:21
Unknown
Essence. So we try to intervene in their lives. We're actually doing a big event at Martha's Vineyard this summer and, of course, August 13th. Come, go with us. We're doing a thing we did last year called Sisters on the Vineyard. And it's like a health care for black women with with all different. We're having Sunny Hostin as our keynote speaker from The View.

00:51:32:23 - 00:51:53:22
Unknown
And we're going to do and we're going to do Beck's Beck's, the scanning from at the venue at the event. And then we rented a house in the middle of the you know, this is what the black was pretty black people go and. All right. And so all the leaders of the all the community organizations are there. It's a great place to meet influencers, but we're going to do back scanning in our house that we're renting and just make a stink.

00:51:53:22 - 00:52:13:22
Unknown
So here, you know, my crazy Haley child who I work for, she made a really cool bikini love of my girls bikinis. So we're going to walk the beach in bikinis and talk to people about breast cancer. But that's what we're trying to be iconic and how we show up. And I am impatient about being iconic. If you did it last year, I don't want to do it again.

00:52:13:22 - 00:52:30:21
Unknown
I'm going to find a new way to think about it, a new way to talk about it. And I won't accept what happened last year. I don't want to hear about it because last year it didn't work. It's not going to work this year. So we're always trying to think of new fun. And, you know, somebody was telling me how, gosh, what you're doing is really fun.

00:52:30:21 - 00:52:55:21
Unknown
I'm like, It's not fun. Okay. We're trying to make we're not trying to make light of it, but we're trying to make a point in a different way, to educate in a different way. And Haley is an elementary school teacher. Before she came to work with, me and I was a marketing person. So I think between marketing and how to educate and how to people observed, you know, receive data and receive information, that's what we try to work on and try to be different about it.

00:52:55:21 - 00:53:21:02
Unknown
So, you know, and I love that. And y'all don't worry. We'll keep you posted of when Ricky's got that information. And on that, yeah, I didn't answer your question. I didn't answer that question though. So yesterday I sent an email sent to today and we're building a network of black women led grassroots organizations across the country. And so I want to be in 50 states.

00:53:21:04 - 00:53:45:06
Unknown
So now we have 90 organizations and 43 states. It's called Belong Brand. Belong stands for. Bless these empowering leadership and opportunity and nurturing growth. And it's an organization for leaders. So we know we have all these black women out there. And, you know, in every city there's somebody, some athlete whose mom died of breast cancer. They started foundation or some mom died.

00:53:45:08 - 00:54:08:20
Unknown
So we're reaching out to all these women who probably never been to a share conference, never been to ASCO, never been to speaks, but they're in the trenches doing the work, taking care, taking care of people, driving them to chemo. And so we want to help those women and bring them resources and tools and information. So we're going to do a webinar every month with one of our medical doctors to talk about what's the last thing I want to do about this thing.

00:54:08:22 - 00:54:33:07
Unknown
I'm on neuropathy, and then we're doing an every other month coaching session like support group coach session for leaders. So how do you deal with the stress of this horrible disease and people dying? How do you take care of yourself? How do you do self-care? How do you coach people about clinical trials and basically help educate these leaders to do better work in the community so we can't be everywhere.

00:54:33:07 - 00:54:57:17
Unknown
So we're trying to find these tentacles and also we're partnering up these the smaller organizations with local peers, with local clinical trial folks. So they can have them to recruit from, and they have someone in their community to recruit from. So we are trying to be in the community in deeper way. So that is fantastic. And in case anyone doesn't know, PIE stands for principal investigator.

00:54:57:19 - 00:55:25:06
Unknown
Wow, that's amazing. I mean, Ricky, you do such amazing work. I did want to make someone asked if you could elaborate on that. Does the gene in relation to breast cancer and black women. Yes. So I don't know a lot about it. It was discovered by Dr. Lisa Newman at Weill Cornell. She's one of an incredible breast surgeon who has been working in Africa probably for 15 years now.

00:55:25:08 - 00:55:47:19
Unknown
And Melissa Davis, who was working at her in her office but now is the head of genomics at actually incredible badass title and more High School of Medicine. Yeah. So they discovered it a few years ago and they're doing a lot more research to figure out. But but it is not on the US panel. So so we just we're working with Dr. Melissa right now.

00:55:47:19 - 00:56:16:08
Unknown
We just got she just got a cancer Grand Challenge Award and it's a five year study in the US, the UK, Ghana, Nigeria, South Africa, Ethiopia and Kenya. And it's a study for breast, prostate and pancreatic cancer. And it's basically looking at the biology of the cancer cell and why a black cancer cell is different than a white cancer cell and what needs to be done differently across the social determinants of health, the genetics, the genomics and the epigenetics of the environment.

00:56:16:08 - 00:56:37:06
Unknown
So we're helping her with the patient advocacy across the country. So we're going global. I'm not sure how yet, but we're going to Ghana in September to try to figure it out. I, I think, are going to bring some share of people to Ghana to work on it. Yes, you can obviously come on with me. You know, I'm I'm so happy.

00:56:37:08 - 00:57:07:23
Unknown
But we need more data. We need this black data matters. We need more data. And so we're so blessed that Melissa invited us to help her do this research and and help her recruit patients. Yeah, you know. Yeah. So. So here's a question. How how are we to support and encourage those individuals who are okay with trying but are not comfortable or trusting with doctors like, you know, we know that.

00:57:08:04 - 00:57:31:05
Unknown
Okay, maybe you're saying that clinical trial is safe, but how do I know that that doctor is really seeing me and saying, this is the best trial for you? You know, you know, we all have gut, you know, in your gut if it's not right. Right. And I think if you feel if you feel uncomfortable, then if that right use your gut, then use your judgment.

00:57:31:05 - 00:57:53:14
Unknown
I mean, most doctors have good intentions. Do they have less bias biases? Are some of them racist? Yes. That's better word coaching these babies in med school to help them not be that way when they grow up. But but if you don't feel good about the conversation you are having with your doctor, then you go find someone else.

00:57:53:16 - 00:58:11:16
Unknown
And I think it's in your gut. It's not, you know, you don't feel safe. If you don't feel safe with your doctor, how can you know you're not going to trust whatever happens, Right? And so something is making you feel that way, right? That you know, what do you want to feels like when something feels good or bad?

00:58:11:18 - 00:58:27:02
Unknown
Use your judgment, use your gut and call somebody you know, call me. I'll go with you. I'll film with you. I mean, I'll get on face time with you. We'll get in and we can always get another opinion. You know, we have a medical advisory board of 15 amazing black women doctors, and I call them all the time.

00:58:27:02 - 00:58:46:14
Unknown
I was there that night and they text me back. But we'll we'll help find another opinion for you. But it's really it boils down to how you feel and how this doctor makes you feel. And we used to have a blast. She died last year, but she used to say she used to walk into the office and say, I want the truth, Chris appointment today.

00:58:46:19 - 00:59:04:09
Unknown
I do not want the McDonald's drive thru appointment today. I want the appetizer, the cocktail, the salad, the main course, dessert. And apparently. And if you're not going to give me that, then I don't want to be with you, but I do not want you to run and not here. Take your hand off the doorknob and talk to me.

00:59:04:11 - 00:59:28:13
Unknown
Right. And so you have. And if they're not giving you that care, then, you know, we need to find another one. And we can help you find one. But there's plenty of doctors out there. But if you don't if you know in your gut and you don't trust, you know what that feeling is like, that idea that that anxiousness, that stress, you know, that stress, if they're giving you stress, you know, that's my that's my, you know, filter.

00:59:28:13 - 00:59:56:16
Unknown
Like if you're feeling weird, that's stressing you out. You don't need that stress. Get somebody else. Well Rikki, we are at time and I cannot thank you enough I can't believe you're like sitting still for for for longer than an hour because you are all over the place which is a major of what you have created and continue to be an innovator in this space.

00:59:56:16 - 01:00:20:05
Unknown
And that is why it is so important. And I'm so glad you came here today to talk to you. Our shared blockchain munity on why black data matters. We matter and we matter. That's right. So everyone, thank you so much for joining us today. Thank you. And please make sure to check out Cher's website for some upcoming educational programs.

01:00:20:05 - 01:00:44:15
Unknown
Podcast episodes, support groups, and make sure that you follow us on social media as well. And when you pop off here, you'll be hit with the survey. Please take those on. They are anonymous. We will read them and that helps drive our content. So again, this concludes our webinar. And Ricky, you're amazing. I love you. Thank you. I love you.

01:00:44:16 - 01:00:57:12
Unknown
Love you, Love you. Thank you so much for having me. Everybody have a blessed day. Check your breath. Talk to your families. You know do the work. Yes, my girl by everyone. Take care.