Conversations on Cancer: National Black Family Cancer Awareness Week—Engaging the Generations
Rea Blakey: It's the Thursday before the Juneteenth Federal Holiday, and that means it's the official start of National Black Family Cancer Awareness Week 2023. I'm Rea Blakey, I'm the associate director for external outreach and engagement at the US Food and Drug Administration's Oncology Center of Excellence, where we're proud to lead both the National Black Family Cancer Awareness Initiatives' social media campaign, be sure to use hashtag BlackFamCan. Also, this conversation on cancer public panel discussion, which is entitled "National Black Family Cancer Awareness Week, Engaging the Generations." Now, this is actually the third annual National Black Family Cancer Awareness Week, it's the official hashtag that we want to make sure that you're aware of, which is BlackFamCan, so that you can use it on social media today through the 21st, which is the length of the actual official week.
We created a social media toolkit for those of you who are not aware, and it's available to anyone who wants to participate. There are no restrictions, you can use anything that's there on that page. We launched the initiative specifically so people would have resources and be able to share information from a trusted resource. There are graphics, videos all right there for your use. Of course, our mission is to increase cancer awareness, to increase cancer equity in particular, reduce morbidity and mortality, and prevent unnecessary cancer burden on families in the most underserved populations. Our OCE Center director, Rick Pazdur, asked the key question a few years back, which led to National Black Family Cancer Awareness Week, and he's on this panel today. Rick, a few words of welcome from you, please.
Richard Pazdur: Thank you, Rea. I want to welcome the panel and all those that are listening to this conversation on cancer. Conversations on Cancer began several years ago, really to engage the public and really to showcase really what we're doing here at the OCE, the Oncology Center of Excellence, but also to really have a social engagement with the public, all of our stakeholders, including patients, academics, clinical trialists, the general public, et cetera, on cancer-related topics. I'm happy we brought these Conversations on Cancer to focus on Black Family Cancer Awareness. As I stated many times, in many times and in many situations, the most trusted people a person has is his own family, basically. One of the issues that has emerged in the past couple of years is an air of medical distrust, and it's important that we address that. One of the major ways of addressing that is to have trusted people that we could get cancer information from.
That includes physicians and other healthcare professionals, but also family members, okay? Because many times, people are very reliant on their aunts, their uncles, their brothers, their sisters, their mothers, et cetera. This is an avenue that we wish to explore here during this conversation on cancer. I'll turn it back to you, Rea.
Rea Blakey: All right. Thank you, Rick. Our panelists have generally agreed to refer to each other by their first names, just for conversation's sake. I am going to ask each panelist to provide just a 15 seconds self-introduction and we will begin with our White House representative and conclude with our celebrity Standup to Cancer ambassador. We'll start with you, Karen. Hi.
Karen Andrade: Hello, everyone. I'm Dr. Karen Andrade, I'm a senior policy advisor at the White House Office of Science and Technology Policy. Happy to be here today.
Rea Blakey: Great to have you. Hi, Keith. How are you today? Let's see. Are you-
Keith Crawford: I'm doing all right. I'm Keith Crawford, I'm a native of Texas. I'm from San Antonio and went to HBCU, Prairie View A&M University, Harvard... I'm sorry, University of Texas, Houston, Howard, and then Harvard for postdoctoral training. I work for Prostate Health Education Network, we are leaders in advocacy for Black men participating in clinical trials, but we create tools for all men on their prostate cancer journey.
Rea Blakey: Excellent, we hope to hear more about that. You're also a cancer survivor, as is our next panelist, Gigi. Hi, how are you?
Gigi El-Bayoumi: Hi, good afternoon. So nice to be with this illustrious panel and with you, Ms. Rea. I'm Dr. Gigi El-Bayoumi, I'm a professor of medicine at Georgetown University School of Medicine and the founding director of the Rodham Institute, which is dedicated to improving health equity in the nation's capital through education.
Rea Blakey: Welcome. Hi, Henry. How are you today?
Henry Henderson: Good afternoon and good... It's still afternoon everywhere. I'm Henry Henderson, I am a cancer biologist by training, medical science liaison by day and by night. I am the co-founder of BlackinCancer and also the director of Cancer Awareness. The organization was developed to create, promote, and amplify Black spaces within the cancer workforce.
Rea Blakey: Excellent. Karriem, how are you today?
Karriem Watson: Doing great, thank you so much for having us here. My name is Dr. Karriem Watson, I'm the chief engagement officer with the National Institute of Health, All of Us Research Program. I'm a cancer disparities researcher by training and happy to be here.
Rea Blakey: Now, I mentioned that we were going to wrap up with a standup to cancer celebrity ambassador, and maybe by now you've figured out that it's Chandra Wilson, who is known for her really breakthrough performance as Dr. Miranda Bailey on Grey's Anatomy, which most people in medicine at some point have watched an episode or two. Thank you so much for joining. Tell us a little bit about why you think it's important to be a Stand Up To Cancer ambassador on this program.
Chandra Wilson: Yes, yes. Thank you for having me. Yes, I've been an ambassador with Standup for Cancer for a while, and my interests are... Basically, like Keith, I'm from Houston, from Texas.
Keith Crawford: [inaudible 00:06:29].
Chandra Wilson: Yes. In my family, in my great-aunt, great-uncle line was an incredible amount of cancer. As we say, cancer took my family members as they got into their fifties and, as the generations under them started to get close to that age, we realized that we needed to change our conversation to where we're not just talking about something inevitable, "You just got high blood pressure, you just got sugar, you just got..." To more of, "Wait a minute, what changes can we make? How can we be advocates for ourselves? This just doesn't have to be what our family has to go through." Based on that is where I started aligning myself and finding organizations that could give me the dialogue that I needed in order to be able to share that with my family. It's my pleasure to be here to learn and also recognizing that this face might mean something to somebody watching, where they'll take the information from me quicker, that they'll take the information from their own doctor or their own family member. I would like to be a good steward over that responsibility.
Rea Blakey: Thank you for sharing that, because for some people, you are the trusted resource. It really is not limited to people specifically in medicine. As we've said, family members, really, are great resources. I just want to take our conversation to get a little bit deeper now, because we're here for the National Black Family Cancer Awareness Initiative. Many of you are familiar that this last week or so, we had a lot of issues with air pollution right across the East Coast in particular. Now, that may seem like a weird segue, however, one of the things that we want to make sure to mention is that this particular initiative aligns with the Cancer Moonshot goals to reduce cancer death rates by at least 50% over the next 25 years. Really, it comes down to what we do as individuals. I'm speaking my way into calling on Karen to talk a little bit about the issues that really have plagued a lot of communities in regards to not only air pollution, water pollution, lead paint, et cetera, where there are higher cancer rates in some neighborhoods, in some communities, in some zip codes.
This is not just new, because there are Canadian wildfires. Karen, would you mind telling us a little bit about this burden for underrepresented communities being more susceptible to cancer?
Karen Andrade: Absolutely. Yes, Rea, that's a very important conversation to have, because it's something that is very important to this administration. I'm very proud to share that I'm part of the team that is implementing President Biden's recently signed executive order on revitalizing our nation's commitment for environmental justice for all. Environmental justice is the concept that not all communities have... It's a goal, environmental justice is a goal that we hope to achieve, that all communities have a fair treatment and meaningful involvement regardless of their color, race, or national origin in developing and implementing environmental laws, regulations, and policies, because we know that not all communities have had access to a healthy environment or to be free of, as you say, air pollution, chemical pollution. There's a discrepancy between the cancer rates that we see between some communities that have been overburdened and have faced more of these toxic exposures.
For example, this is actually... I hope you have a minute. This is something that I learned very early in my career and that became one of my driving intentions. When I was a very young, right after undergrad, I really was aiming to see and hoping to see how environmental science was really put at the bed to the benefit of people. I worked for the city and county of San Francisco and I would get to go to these beautiful public hearings in these beautiful buildings. One day, I walked into one and I saw a person, a woman that looked a lot like me, just a few old years older, and she was giving testimony in this public hearing and sharing how, when she was pregnant, she was being constantly sprayed by pesticides and getting drift of these pesticides through her community.
She was sharing not only that experience, but her son had severe neurodevelopmental delays. She was wondering, "What is the relationship here?" A scientist came up and really started talking about the nuances and about what they had found in this community. It really showed me the power of science really elevating the needs. The need for justice and the need for everybody to share healthy environments. It's absolutely true, as you say, Rea, that different communities have raised... It's a well-documented disparity. Different communities see different cancer risks and some of them having abnormally high cancer rates. That is why, as you mentioned, yes, President Biden has reignited the Cancer Moonshot Initiative and they've really mobilized the national effort to end cancer as we know it. That specifically includes preventing cancer before it starts. This is something that is really an important priority, and understanding and addressing environmental exposures is something that's very important to this work that we're trying to build into a whole of government approach to race and to make key, this work, as part of all that we do.
Rea Blakey: Right. Thank you.
Karen Andrade: Rea, if I could just jump in. Shockingly, in Washington DC, there is one ward, we're the highest rates of cancer. DC, we're number one per capita in the country in cancer deaths. Where there's actually dumping. People know, from all over the city, to go and dump tires, trash, whatever. Now, there are groups that come and clean, but then the next week, it's back up again. Also, what's shocking is that lead contamination, to your point, Karen, that's rampant. It's so important to give those specific examples instead of saying just slogans, which are important, but people tend to glaze over. When one says "Environmental justice," what are we talking about? The other point I want to make is that, so often, African Americans, people of color are blamed, "It's because you're not following a good diet, it's because you're not exercising that you have higher rates of cancer."
When we look at how communities are actually built, no sidewalks, no trees, the canopy of trees that helps. The things that I mentioned, it's important to look at these issues holistically and to avoid using too much in the way of slogans and scientific jargon. We want to just be real. That's why I'm so excited to be on this panel.
Rea Blakey: Yay.
Keith Crawford: I had a point that I wanted to bring up too with Gigi, it dovetails directly. I'm not going to make it a state by state issue, but from the state of Texas and Houston, there's a Fifth Ward. The Fifth Ward is close to the Union Rail Station. You have this redlining that exists in our society. We have, around these red lined areas, the highest level of pollution. What are we going to do? We have two years right now, we have a short period of time to make a change. It's taken so much, even from the people of Houston and for the Fifth Ward, it's taken them a long period of time just to sue, to get recognized something that was truly obvious that NIH publications have already demonstrated exists, especially when we start talking about pollution and toxic chemicals. In the state of Texas, we're talking about oil, chemicals from Fulmont to Freeport, Louisiana, all in that area there. We have to be very aggressive. I wanted to know how aggressive do you think that we'll be able to... How aggressive can we be over the next two years?
Rea Blakey: Is that a question for Karen, because of the two-year reference?
Keith Crawford: Yeah.
Rea Blakey: Okay.
Keith Crawford: Yeah, yeah. Yes.
Karen Andrade: No, Keith, aggressive is an interesting way to frame the question. First all, for Gigi, personally, I don't think of "Environmental justice" as a slogan. Prior to my work in government, which is I'm very new to, I was part of being in the... Not only did I grow up in a community that faced environmental injustice and that works towards environmental justice, but I do think it's about a movement and about giving name and understanding that this is work that has been happening for a long time. As you say, Keith, these legacies. You can find in Texas, in Louisiana, in Oakland... This is a pervasive problem and it's very clear for this administration and for most that this is something that is a legacy, that is entwined with so many of the, as you say, redlining and a lot of the important work that... Pardon, work. A lot of the clear legacies that exist in our society.
Most of the work that is what we're trying to do is to build on and to make sure that the federal government actually has the tools that all the agencies... This isn't just a priority, Keith, for NIH, but this is a priority for all of the agencies. They understand that transportation, that as we build infrastructure, that as we think about that Department of Defense, that all the agencies are thinking and know what environmental justice is, and that is a goal that is a whole government effort. There are multiple things happening, Keith, across the government, so we're trying to coordinate, we're trying to be as quick and as effective as we can possibly be, but there's, a lot of... To me, at least personally, if you get a chance to read that executive order, it is really a statement of not putting anything under the rug and saying, "We've been doing our best," but it really is about saying, "This is a problem, there's so much more that we need to do, and to do it now."
Chandra Wilson: Can I address that for a second, Karen? I'm in between where Gigi and Keith are, because my grandparents' house was in Fifth Ward in Houston. The umbrella of environment is nice, but when you can point to and say, "Hey, 59 freeway goes right through the neighborhood and has caused a big problem." You know what I'm saying? When we're talking about naming it, being able to say, "Okay, that sewage area, that bayou right there, that cell tower," to be able to specifically point to those things and saying, "These are the things that we are putting our eyes on to figure out how can we use its value, but not hurt the community that's adjacent to it."
Gigi El-Bayoumi: That's exactly what I meant.
Chandra Wilson: [inaudible 00:18:53] Value.
Gigi El-Bayoumi: Exactly what I meant. Don't mean to throw out the baby [inaudible 00:18:57] water, but that specificity is so important.
Rea Blakey: This is excellent. I feel like we can segue a little bit more and perhaps talk specifically about issues that have to do with making sure that not only people are aware of the environment and additional cancer risk, particularly among some Black communities due to redlining or whatever historical issues are at play, but also, what about the concept of... This is national cancer survivor month, so because it is, I'm going to turn to Henry and ask him to talk a little bit about some of the work that he's done in regards to genomic testing and talking about disadvantaged communities. Some of it, I would imagine, Henry, is that people aren't even aware of what the necessity is.
Henry Henderson: Yeah. Someone mentioned it earlier, that we should take the complex scientific jargon and bring it down to the fact where my 10-year-old nephew can go back and repeat it to his friends. When we think about testing, specifically genomic testing, you can talk about tumor testing or tumor genotyping. The main thing is we're looking for differences within the cancer. I always like to give the analogy that I have two younger brothers. When we were kids, my mom had to buy different cereals for us, because we didn't eat the same thing. She knew what to do, because she knew our interest, she knew what made us different. That's the exact same thing with cancer, biomarkers are a way for us to look for the differences from cancer to understand what type of treatment may be work best, what type of treatment may not work best, what type of treatment that, "Hey, this may cause a resistance."
Also, clinical trials. There are some times where we don't find anything right now, but we may find something five years down the line that may be helpful for someone to get enrolled into a clinical trial. A biomarker testing or genomic testing is a way to look for differences within the cancer, so that you have the best information to actually treat that patient on an individual level. I really like to stress that people's cancers are different, just how everyone on this panel is really different. Even bringing that in, you have to learn about getting screened as well. Screening is a way to catch cancer early. If we catch something early, we know how to target it, we know how to treat it, but if you catch it later, it makes it really difficult to treat. Historically, we see that Black people specifically, we're screening at a lower rate.
We are offered genomic testing and biomarker testing at a lower rate. These can be tons of things, right? From provider biases, from just not being aware, just from going into the office in the hospital and the doctor's explaining something, you have no idea what they're saying. My family is blessed to have me as a cancer biologist. They can call me on the phone and put me on speakerphone, but not everyone has that. How do we get the communities to understand what we're seeing in the clinics and what we're saying in the papers, and how do we get them to be an advocate for themselves when it comes to this type of testing? I really want to make that point across, that we have to understand that everyone's different when it comes to cancer and that, for screening, we have to understand that Black populations specifically, we get the shorter end of the stick with cancer.
For example, for breasts, we know that white women have a high incidents, but Black women die at a higher rate. Just most recently, we know that colorectal cancer has been on the forefront with some of celebrities passing early. We're now looking at lowering blood screening age for Black men across all cancers. Understanding that these are things we have to know, but we also have to talk about this within our family, so that they know as well. For me, prostate cancer is a very big thing in my family. I [inaudible 00:22:28] with my great-grandfather, but I didn't get to meet him because, of prostate cancer. My granddad is a prostate cancer survivor. Now it's coming up for my uncles, my mom's brothers, to get tested, and I know that me, my brothers, and their children would have to go through the same thing. Understanding that me knowing my cancer history helps me make informed decisions, so I know when to get tested across all cancers as well.
I hope that answers your question, but I'm more than happy to go back and forth or even entertain some more questions around genomic testing and how it's important for us to understand what makes our cancers different.
Rea Blakey: Absolutely. I just want to remind everybody, this is not an inquisition. You are allowed to...
Henry Henderson: No, no, of course not. I just like questions, so if you have any questions... Sometimes I talk and then, if someone says something, I may miss. That builds onto the fruitfulness of the conversation.
Rea Blakey: Yeah, we're we're going to say that that's just being conversational. Because we specifically mentioned prostate cancer and we have Keith here with the Prostate Health Education Network, Keith, why don't you talk a little bit about the importance of screening? You guys have been extraordinarily successful, your track record speaks volumes. Share a little bit about the work that you've done.
Keith Crawford: Thank you. It takes work. People, we can sit back and talk about it, or we can just roll up our sleeves and just get to work. We all have to get to work. Each one of us are working as hard as we possibly can. What I-
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Keith Crawford: Each one of us are working as hard as we possibly can. What I want to say is our most recent one was extremely successful. We did a tri-state promotion about the importance of early detection screening. That was New Jersey, New York, and Pennsylvania. We've reached over 10 million people, but you don't really hear a lot about us, but we're there. What we find is, and this is something that Henry said, the messaging has to be simple, but the messaging comes from reliable people. So the way we set up the tri-state area promotion, and it's not just tri-state. We were in the Virginia, Maryland, DC area, North Carolina, Virginia. I'm flying through Virginia tomorrow to work on free PSA screening, North Carolina, Georgia, Florida, all those states that have a very large black population, but we're both in all over the place. But we were very excited about this one because we reached 10 million people.
But what we did is we bring religious leaders to the table and then also we bring political leaders now at the federal level and at the state level. And then we were lucky to have one of the presidents of one of our sponsors, a group that we're partnering with gave this announcement also the importance of early detection screening and why it's important right now. And so what we've seen is just with physicians also, is that they're not gods. Physicians are your consultants. And then when you bring them down to a level where you're talking with them face to face, patients are more comfortable. And that whole issue of, and I'm very careful because some people say it's a lack of trust. I said it's not a lack of trust. Anytime you develop a relationship with the person, you have to build trust.
Rea, if I'd never met you before, I would never give you my wallet and I don't have a lot of money in it, but I would never give you my wallet.
Rea Blakey: You can give me your wallet.
Keith Crawford: But now that I know you. I say, whoa, do me a favor. Can you hold my wallet for me? I'll be right back. So that's building trust, that's establishing a relationship. And that's so important. So what we recognize and we use a template that that can works for breast cancer also because we partner with breast cancer. We call it Hansel and Gretel. A little bit of information repeat it, a little bit of information, repeat it over and over again and just keep it simple and stupid. So kiss it. And that's kind of where we find success. And something I also want to mention is this. People talk about it, but it can be done. And we have seen success even at the clinical trial level, we have seen success. And success that people won't even believe the level of success. But the point was communication with your clinician, recognizing your physician, your healthcare provider, nurse practitioner, they just want to help too. I'm not saying everybody's perfect and everybody believes that, but you have to have enough information to sit down and have a discussion with your doctor that you feel comfortable with.
Rea Blakey: Keith, I don't want to make you give medical advice, but I know that there are probably people who are listening wondering about the differences in regards to PSA test results for African-American men and where the screening cuts. Again, I don't want to make you give medical advice.
Keith Crawford: No, no, no, no. That's a very important point. Here's what we need to know. Black men are at highest risk for developing cancer. If you have a family history of cancer, you're at a higher risk. So you move from one to six, to one to five. Black men should begin screening for prostate cancer at age 40 or having that discussion.
Rea Blakey: 40.
Keith Crawford: 40, not 45, not 50, not 52 and a half. Like Uncle Pooky said, oh well I had it five years ago. I said, no, no, we got to go back and start and get this done. And same thing. And then it's 44 for black men but for black women with breast cancer. So I said I was at a HBCU. So I go back to my HBU, especially since Zoom and we'll do a tag team with breast and prostate and I'll talk to the young men about prostate cancer even though they're in their twenties because they can go back to their communities and start educating their communities or talk about it at their church so they're ready. But black women, when we talk about breast cancer, I'm talking to women at Prairie View and it's not a plug, but that's where I was. But who are 20, 19 developing breast cancer and they don't know or have that discussion with their mothers or anyone about their breast health.
Rea Blakey: Right. So I'm going to get Karriem to chat up a little bit here because I know he's a fount of knowledge and information, but there's a lot that you can pick from in the meaty sandwich that's been delivered in front of you. So Karriem, your comments.
Karriem Watson: So much. So to pick from just even thinking about my current role in All of Us research program and just even the importance as I think about the comments that Henry made and talking about the importance of genomic testing, genomic data, All of Us research program rolls out of the NIH, National Institute Health Precision Medicine initiative. And as Dr. Gigi said, thinking about that term precision, precise and it really rolls out the fact that we had to acknowledge that a one size fits all approach does not work. Just like different cereals was not going to work for Henry and his brothers. It's the same when it comes to treatment. It's the same when it comes to testing. And science has taken us there. We actually are at a great place in science. We can understand how one's family history, one's DNA can be connected to one's what we call ZNA, your zip code neighborhood associations, right?
Because where you live can impact your health outcomes just as much as information you're born with. And so when I think about the information that we're collecting within the All of Us research program, we're collecting information allows us to understand someone's family history, DNA, genetic information, and couple that genetic information with environmental information with survey data and even social terms of health data. Whereas a cancer disparities research is so important for me to know not just someone, if they've gotten a PSA test to see if they're at elevated risk for prostate cancer, but to also know are they smoking? Do they live in a zip code where I know that there's some policies that are taking place where they may have more access to menthol related cigarettes, which are going to be more difficult to quit. All of these things come together for us to think about precision medicine.
And those are some of the things that we're collecting in All of Us research program. And back to another point that Henry made, you shouldn't have to be a cancer disparities researcher to be able to be that person that your family can call where you know my family history. I lost my birth mother to breast cancer when I was six years old. My dad remarries, my new mother gets cancer and my dad had to become a patient navigator. He had to become to navigate my new mom to how to get through the system. And then during the pandemic, I lost both my new mom to lung cancer and I was doing lung cancer research at the time. And Henry, to your point, I had to pick up the phone and call that community hospital where she was getting her care and say, don't start that chemotherapy yet until you do molecular targeted testing of her tumors.
Because I knew that clinical trials had just came out that would allow her to qualify for certain targeted treatments. But I shouldn't have to be a cancer disparities researcher to say, wait, did you test the tumor? Is my mother getting the most innovative and updated care for that tumor? And guess what? She did qualify for innovative treatment and it extended the quality of her life. She did end up passing, transitioning from complications from lung cancer. And she was never a smoker, never had any of those environment exposures that we would think of. But the quality of life she had was made better because of I was able to give her access to better treatment. And when my brother died and during the pandemic from complications of colorectal cancer, Henry, I was able to make sure, I tell people that, tell my family members we need to get tested or screened for colorectal cancer.
And in our program, I'm so proud of the fact that people who participate, they could find out if they have conditions like Lynch syndrome or if you may be at increased risk for certain genetic conditions that may put you at elevated risk. And then we can have conversations about when should you get screened and those family conversations. And I'll end with the, this concept of what you said Keith about trustworthiness is we have to move beyond. Because a lot of time, particularly in African American community, I tell my colleagues and my peers don't go into the black community expecting for trust just to be there. Sometimes given the health systems a side eye can save our lives, it's okay for us to have a little leeriness to certain things. And don't mistake our leeriness for our desire to not participate or not be engaged, but to really do the work to become trustworthy as a system so that we can have access and awareness and engagement in things from clinical trials all the way to genetic testing.
Keith Crawford: Can I make one statement also? There's one thing and every patient, every person who's online right now is we're moving from the 20 into the 21st century, 83 or 85, no, let me... 80 to 85% of all genetic information that we know is based upon European ancestry. Somewhere around 14 to 15% is based upon East Asian ancestry. We have to participate, we have to be part of All of US program if we're going to have genetic information and these next generation drugs are based upon your genetic makeup and there are positive results coming out of these clinical trials right now.
Chandra Wilson: If I can chime in on that from not being a doctor end of it.
Keith Crawford: I don't know Dr. Bailey, I'm bitting my lip not to...
Chandra Wilson: But Karriem it when you said ZNA, that was a big zinger in my head, because I'd never heard that term before. If Henry were to come onto the block and to talk about DNA and genomes the way you just did, I would be convinced, right? And I would want to bring everybody along with me because of the way you just simply spoke about that. At Standup to Cancer, there is an initiative called Project Teach, which is a training course for black women to learn more about their health and become, I love this term, an empowered patient partner. So basically people that complete the courses are prepared to actively engage with their peers, with researchers, with clinicians to help increase this awareness and participation of black women in clinical trials. So what you were talking about, Keith, is being a part of these clinic clinical trials and being able to get the word out there that nothing bad is going to happen to you, To be able to guarantee that if you are part of a trial, that's not a bad thing.
If you're measuring ZNA, that doesn't necessarily mean that's not another form of redlining, to say that everybody over here is like this. So we're not going to give the good stuff over there. If you're a part of this trial, does that mean that if I'm really ill, am I not going to get what I need because I need to fit into what this trial is... The information since trial is trying to murder, do I have to die in order to be a part of this trial? So the more we can tell participants that this is about do no harm, this is about, I'm not going to let something... I'm not going to let you get pushed to the brink for the sake of research in order to be able to do this research the better and have Henry go on a walking tour around the country because we need to see your face and we need to see folks like you.
I remember when I watched Tyler Perry did the forum about getting the vaccine and answering all those questions and then getting the vaccine on television that meant something to somebody that sits up and pays attention to Tyler Perry. And we were able to hear all about Dr. Kizzy. I mean, I was blown away hearing about her. So all of that's important. So as part of our initiatives going forward, we just have to make sure that we are assuring people that we're not out to let Tuskegee be part of our history, but that we have moved beyond that, right? And now it's about being a part of the solution. And we need our DNA to do it. We need our testing to do it. These numbers need to reflect our community as well.
Rea Blakey: Gigi, I see you are anxious to speak, but Rick, I do want to hear from you after Gigi talks. Okay. You've been quiet.
Gigi El-Bayoumi: Thank you. So I'd like to talk about a model that I think was extremely effective during Covid, to your point, Dr. Bailey. And that is the Black Coalition against Covid, of which one of the co-founders, Dr. Reid Tuckson, is actually the one that is established it and brought a group of us along. So this model, and I would really encourage you to go to the website included bringing all the four HBCU medical schools, the Greek folks, fraternity, sororities, the faith-based community, education, labor unions. And we actually had descendants of the men from the Tuskegee trials or experiments that came on and actually did some of our PSAs. And what they did is they said that first of all, many people had disinformation about what Tuskegee was. People thought that things were being injected, but actually it was the prevention, they were prevented from getting the treatment.
We had researchers like Dr. Kizzy and we had people from Dr. Fauci, from the NIH. And then extremely importantly, not just researchers, but clinicians and just regular folks that look like us speaking to each other. Because when you look at Concordant care, meaning that the patient and the physician or clinician are of the same background, there is a much higher likelihood that people are going to be screened effectively and are going to be offered the treatments, the genomics, all of that. I'm not saying that our white counterparts can't do that. I'm just talking about what is fact and what the research reflects. But I do want to bring up one point, which I think we've skirted around, but I want to actually bring it up. And that is racism in action. What does that mean? Well, I'll tell you, we just had a focus group with the health ministry and at Pennsylvania Avenue, Baptist Church because we're trying to figure out ways of increasing colon cancer screening.
And folks were telling us how the doctors treated patients. And it is awful. It is awful. From telling a person who's dying of colon cancer, and this is his sister that relayed this. The doctor comes in and says, you're going to die. How would you like to die? Or a woman going in, she has diabetes for an exam, for podiatry. The person comes in and doesn't even walk into the room and says, you need to soak your feet. It took her three years to make an appointment with a different podiatrist. So I don't think that we, the healthcare system recognizes not just do no harm, that we actually harm, that we have a chilling effect on people's behavior. And the sad thing to me that we try to educate folks around is that just like when we go shopping for a car or shopping for an outfit and we look at all the different places, we should also find a different doctor.
Keith Crawford: Shop around.
Gigi El-Bayoumi: If the doctor is disrespecting you, walk out. That's just not acceptable. And because I feel like that gets lost and I think it's bigger organizations such as this format that can really hold people accountable. And then finally, my last point is because again, why, to Karriem's point, are there such disparities? And to Keith's point of why there are such great disparities, well, I'll tell you, being on the DC Cancer Coalition Group, that there are 150 physicians that take Medicaid, oncologists, 150 oncologists in the District of Columbia that take Medicaid, they have that on their books. But how many are actually taking patients? Three.
Three patients, three physicians who are oncologists that take Medicaid for the entire District of Columbia. So you see it's several levels as we know. The part that the black fam can is talking about what the history is. So when I was going through my divorce, guess what? I missed getting a mammogram for two years, actually three years. So if somebody's going through a hard time, it is our responsibility as community members, family members to say, I know you're going through a hard time, but did you get your colon cancer screening? Did you get your breast cancer, prostate, lung cancer? I think that these are the kinds of conversations that we need to have individually within families, within communities. And I just want to speak about the role of the faith-based community. Choose healthy life. Awesome. Please look it up.
Rea Blakey: Okay, thank you, Gigi.
Chandra Wilson: Just to follow on that, why is that a 150 are listed, only three taking, is that by choice? Just because they're not [inaudible 00:43:49].
Gigi El-Bayoumi: There's a disincentive and it's called how physicians and others are being reimbursed. And so what's happening in a city like DC, like many other places around the country, more and more physicians are going into concierge medicine. Why? I'm not judging them, let me tell you, as a general internist, all the paperwork, how people are being reimbursed, it's like, this is ridiculous. So if we're going to make an impact, every single one of these things and issues, because I would've never guessed that only three physicians, oncologists, I would've shocked by that. Shocked.
Rea Blakey: Yeah, we are too. Yeah. Yeah. Rick, I do want to ask you, because earlier in the conversation, the question about clinical trials, and I guess there are still some people who worry that they're not going to receive good care or proper treatment. So could you speak a little to the idea of at least standard of care in cancer clinical trials?
Richard Pazdur: Yeah, there's several issues when it comes to clinical trials I'd like to address.
Rea Blakey: Sure.
Richard Pazdur: One of the major issues is the lack of representation of underrepresented and ethnic and racial minority groups in clinical trials, particularly in cancer. And this is a ever increasing problem. And it's not getting better, it's getting worse because what is happening is that many of the clinical trials are offshore where we see not the majority of patients coming from the United States, but the minority of patients coming from the United States. So roughly now for international registration programs for major pharmaceutical companies, many times only about 20% of the patients are coming from the United States and a large portion are coming from other areas of the world. So this puts us behind the eight ball, so to speak. If we're really interested in ethnic and racial diversity in the clinical trials, because we're already starting from a small number of US patients.
So recently, and this is a result of recent legislation, is requirements of companies, pharmaceutical companies, to address this issue prospectively in advance and asking, what is your plan on ensuring ethnic and racial diversification of your enrollment in clinical trials? What are you doing proactively to go out and find people that are currently underrepresented? And I think that this is a major advance. It basically came out of the Covid pandemic and the ensuing kind of unrest during that period of time to really address this issue. And I think we're just beginning on this process of going and dealing with companies to develop plans.
But I think this is an important step forward because here again, unless you address this issue, this challenge prospectively and make companies accountable for it, we're really not going to get the answer. It's difficult to do after the clinical trial is completed. And I also want to make the point is that diversification isn't just in the registration trial. It's throughout the entire spectrum of drug development, including early phase studies of looking at doses of trials and preliminary activity. Those are important trials too, to have early identification of potential differences between ethnic and racial minorities in clinical trials.
Keith Crawford: Can I make a comment just to highlight that? And so normally we have a summit each year in September, and we brought in the FDA to talk about just this topic, this requirement. What we would like everyone to know today is that it works. So we created a tool, online tool that allows you to search, it's not an app, it's just a web tool called Fin Trials. So each-
PART 2 OF 4 ENDS [00:48:04]
Keith Crawford: Web tool called PHEN trials. So each month I take all the actively recruiting clinical trials and place them in their diagnostic bucket. So if you're low risk, intermediate risk, metastatic castration-resistant disease, more advanced diseases, then there are clinical trials that fit. So we partnered with large pharmaceutical companies and we have demonstrated as high as 20% African-American enrollment. So they were at four, three, and four. And we're able to boost it up because we created the tool. We have newsletters and that was very important where you keep it as simple as possible, a PARP inhibitor... I'm not going to go into the detail of something that interferes with DNA repair. I'm just going to say this is a drug that we need to know what your genetic background is. And depending on your genetic background, you could use it. So if we can feed, give people information little bits at a time, but continue to repeat it and then bring in, and so we created something and there was a point that you have to... The doctors need to understand, or the investigators need to understand the expectations of the patient.
And the patient needs to understand the expectations of the doctor. So we bring them together to talk. And when a patient understands standard of care. "Okay, standard of care, what does that mean?" So when I tell people standard of care, I say, "Look, standard of care is like this. Three scoops of ice cream, some chocolate sauce, some nuts and whipped cream. Now versus the clinical trial is three scoops of ice cream, chocolate sauce, nuts, whipped cream, and a cherry." So standard of care is what you're going to get when you participate in a clinical trial. You're going to get cutting edge technology. Somebody said, "Concierge." Concierge medicine at the lowest cost. And then that Tuskegee, we did a survey and we're writing a finishing... Well, we're submitting a paper that the majority of black people that in our population across the country in different areas of the state stated they're not worried about Tuskegee. I just wanted... Can you save my life.
Karen: Right.
Rea Blakey: Right.
Keith Crawford: And so if you can do that, save my life, is it going to benefit my family and is it going to benefit society? You see how people don't say that.
Rea Blakey: Right.
Keith Crawford: And only 1.45% of those who surveyed said Tuskegee would make a difference at their decision because they didn't.
Rea Blakey: For the vast majority of people, it's really about the immediate moment. Kareem, I know you wanted to get in on this.
Karriem Watson: You know this, Rea.
Keith Crawford: I'm like, "We were ready for this one." Yeah.
Karriem Watson: Keith, to you. And I want to just continue to acknowledge and hold up the work that PHEN did. I first started talking about diversity in clinical trials as a graduate student promoting the work that Prostate Health Education Network did. When you all would encourage us around the country, had those virtual race... 5K races around Father's Day and Men's Health Month to talk about getting African-American men aware for prostate cancer screening. And the reason why it was so important for me as a graduate student to work with an African-American urologist and an African-American path geneticist, Dr. Rick [inaudible 00:51:31] and others, was because the messenger matter too.
Keith Crawford: Yes.
Karriem Watson: And that's what... The messenger matter and even the place to Dr. Gigi's point matter. We partnered with a church on the south side of Chicago to host those PHEN networks. And this concept of, and I want... We actually as a program, all of us, we actually went to Macon county and had community town halls with over 300 people in Macon County in collaboration with Tuskegee University to talk about the United States Public Health Service study of untreated syphilis in the African-American male. And the reason I say the full name of that study is because Tuskegee didn't ask for it. And by saying the full name of the study, it takes the onus off of Tuskegee and really begins to have those community conversations. And to Keith's point, there is literature that shows that the main... Majority of the reason why African-Americans don't participate in clinical trials, it's not because of the historical justified medical mistrust. It's actually because of access and awareness. There's been systematic barriers and systematic racism that have not allowed African-Americans to be asked to engage in clinical trials.
We are not asked at the same rate. We often get our care in community health centers where clinical trials are not likely to be conducted. So one of the things we have to start doing is raising the awareness of where clinical trials are conducted, thinking about our federally qualified health centers, thinking about our safety net hospitals and our community hospitals, making sure that places are of where clinical trials are being conducted match where places where those who carry the greatest burden disease are getting their care and then also making sure that we engage those trusted messengers. One of our national partners in All of Us research program is National Baptist Convention, USA. We kicked off All of Us research program in New York at Abyssinia Baptist Church. Who better than the late Reverend Dr. Butts, to talk about the importance of precision medicine research than Dr. Reverend, Dr. Butts and his wife, first Lady Butts. We got trust by proxy through them in that community. Another one of our partners is Delta Research Education Foundation, DREF, which is the not-for-profit arm of Delta Sigma Theta sorority.
And the whole Divine nine, black Greek, the letter of sorority and fraternities are one of our partners. Again, this trusting messenger. And the last thing I want to say is really encouraging. We need more Henrys. We need more [inaudible 00:53:51] on the street. We need more Dr. Gigi's conducting these trials because... So our partnership with HBCUs has also shown that when you get awareness and access to some of these brilliant and bright students, what we can do, we haven't even touched the surface of what we're able to do when we get these opportunities right now.
Keith Crawford: Yeah.
Rea Blakey: Excellent.
Gigi El-Bayoumi: So true. So true. And I would say, I would add that oftentimes what I see having been a... Why I am a medical educator is that sometimes the easiest route for physicians is to say, "Well, I've offered colon cancer screen and a colonoscopy, and I was told no. And so what you see on the chart is patient refused." Instead of saying, "Well, why? What's the barrier? Is it a ride? Well, we've got partners that can give you a ride. Is it the prep? Well, there's a different prep. Oh, have you considered if you're at average risk, there is Cologuard that can use." All these other alternatives. Not to mention lung cancer screening. Many people do not know that if you have had a history of smoking beyond 30 pack years, that you actually qualify to get a CT scan, a low dose CT scan for lung cancer screening. So I think when we're talking about the diversity, equity and inclusion or implicit bias training, that is getting a lot of funding, at least in academic institutions, I would say let's be accountable.
Let's look at how many black versus Latinx versus white patients actually complete colon cancer screening. That's really... It's all about the action. It is not just, that's what I meant by the way, Karen, is that I... It's part of it is I'm so jaded, I'm tired of hearing slogans like Black Lives Matter, where actually black lives are mattering less and less. So that's sort of where I came from there. There needs to be accountability. Show us what you're doing, show us the outcomes. And it's not just enough to say, "Well, here's a referral. Bye-bye." That's not going to cut it.
Keith Crawford: And you said Black Lives Matter. I just wanted to add to this, when you look at the numbers per day, more black people die from cancer than die at the hands of police. And we're not talking about one or two times, we're talking about 10 to 20 times higher rates when we start talking about cancer. And I agree with what you're saying. It can be done. And I just wanted to make a comment. There are people who are just uncomfortable talking with people from other ethnic groups, especially black people. And the point is, there has to be some type, if they can implement in medical school some type of cross-cultural training at least so people can get comfortable.
Gigi El-Bayoumi: I'm going to just interrupt because I feel so strongly about this. They know how to talk to people when they're doing their community service to get into medical school. I'm sorry. If you don't know how to talk to people of different backgrounds, then you should not be a doctor. I mean, that's just -
Keith Crawford: Well then there's a whole bunch. There's a whole bunch of -
Gigi El-Bayoumi: No, no, I know that. No, no -
Keith Crawford: But you have to train. You have to train them.
Gigi El-Bayoumi: No. So let me tell you, because -
Keith Crawford: You can say that.
Gigi El-Bayoumi: I will say this. So hear me out.
Keith Crawford: I'm just saying that -
Gigi El-Bayoumi: I have done a lot of thinking. I was program director for 15 years of residents and I would see medical students start for all the right reasons. By the time they were finished with their training, they were jaded and would objectify the very people on whose backs that they have trained. And this is why it is. We actually treat them racism and classism. You got two women both with pneumonia. One is HIV positive, schizophrenia in the middle of a psychotic break, who's homeless with pneumonia. Another one is a college professor. Who is easier to take care of? Well, that's a no-brainer.
Keith Crawford: That's the point is when you make that -
Gigi El-Bayoumi: But please hear me out. Please hear me out. Because what is happening in hospitals and in clinics is that there isn't the support to take care of that homeless woman. Furthermore, the administration will say, "Get that person out of here. Get that person out of here." It's 30 degrees outside. That means home. I mean that means outside in the freezing. So what we are doing is we are saying... And the surrogate, when somebody like that with that demographic comes in, people are like, "Oh, I don't want to deal with that." So we are actually the ones because they don't start off that way. So my answer to this, and this is part of the work that we do at the Rodham Institute, is having the community members themselves, not when they're in distress, not in community clinics, but where they are leaders and we're on equal footing to really see what the issues are to learn about environmental pollution, to learn that there are only in was Washington DC four full service grocery stores which one can argue for 200,000 people that there's no bus that connects Ward seven and Ward eight.
I mean, we could go on and on and on and unless people know that -
Keith Crawford: But I recognize -
Gigi El-Bayoumi: It takes three buses to get -
Keith Crawford: It's stuff that people already know. They've been talking about for -
Gigi El-Bayoumi: No, they... But no, no, no, no, no, no, no, no. Not medical students -
Keith Crawford: Need to talk about it.
Gigi El-Bayoumi: I'll tell you. This is my -
Keith Crawford: There was publications on this. There's publications on this.
Gigi El-Bayoumi: Well, there may be publications. I'm just... I'm breaking it down for you from what happens. I'm an experience -
Keith Crawford: And I'm telling you I'm in the field with -
Gigi El-Bayoumi: I understand, but I'm talking about -
Keith Crawford: [inaudible 00:59:41] -
Rea Blakey: Let's do this, ladies and gentlemen. While I really appreciate your passion in this subject matter, how about we just pose a different question so everybody can sort of -
Gigi El-Bayoumi: Obviously we both feel very strongly.
Rea Blakey: Obviously, and I think they're valid points.
Gigi El-Bayoumi: I'm looking at people where people that are trying to serve. That's the most important thing.
Rea Blakey: Exactly.
Gigi El-Bayoumi: Is that we're all on the same page.
Keith Crawford: I don't disagree with that. I just [inaudible 01:00:09] we have to work, we have to continue to try. We cannot give up. We can't just say, "Oh, it's racist."
Rea Blakey: I think you both agree.
Keith Crawford: Yes, we know it's racist.
Gigi El-Bayoumi: Oh, well [inaudible 01:00:19]. Of course there's no question. I'm not giving up.
Keith Crawford: We have to fight. There are too many people. All the lives that we're meant to -
Rea Blakey: Okay, and so this is not where I'm [inaudible 01:00:29] on this particular program.
Gigi El-Bayoumi: We're the same page.
Keith Crawford: Okay.
Rea Blakey: We've never had this happen before. But it's kind of interesting to watch.
Richard: It's entertaining.
Rea Blakey: So go ahead. What'd you say, Rick?
Richard: It's entertaining.
Rea Blakey: It's entertaining. It is.
Richard: Plus there's a major problem here. But I'd like to hear more from Keith because you were interrupted. So I want to hear your point here.
Rea Blakey: Oh, and we're back.
Keith Crawford: Okay. My point is that from what our experience is, there's... Yes, there's racism. I'm not saying that there's not racism, but there are people out there who lack the ability to effectively communicate and they want to. And what we do is, and I've seen it, we had folks from North Carolina talking to patients and when pats... When, and then we can give them feedback. We give them feedback of, "Well, I don't think you need to use those type of words with black patients. Maybe you should think about using this." I didn't know that. And they will tell you, "I didn't know that that was a problem." I'm not saying that they're not racist people out there, but there's a population of folks who just need help effectively communicating.
Gigi El-Bayoumi: So my point -
Keith Crawford: They're very good. They're very smart. They're very smart. They do a great job. And then when they get in line, they get nervous about black people. The amount of time, minutes that they spend with black people is significantly shorter than the amount of minutes they spend with white people.
Gigi El-Bayoumi: There's no question. And I agree, but my point Keith, is this people... When somebody moves to Washington DC they go to the wharf, they go to the marina, they go to Georgetown and they learn what words, what's happening. By definition as a doctor, I mean do I know everything there is to know about LGBTQ or deaf people or blind people or disabled people? Absolutely not. As the late Dr. Paul Farmer who's a MD PhD, is a medical anthropologist physician, said, "We have to take a mini ethnography." I'm not saying that everybody's racist, but we have different standards so that if a president of let's say, I don't know, France came to that student or the resident or the physician best believe that they would get a very different interaction where people would try to understand them that... So that's my point. And communication is key. But again, unless it's within the context of something bigger, I'm telling you those... I've seen people go through the training, they walk out, they past the black administrative staff and don't speak.
Keith Crawford: But those, they're arrogant people from the get-go. So, they're... But see, they -
Chandra Wilson: Can I ask a question?
Rea Blakey: Can we let Chandra get a word in? Is that okay?
Chandra Wilson: Sure, sure. And this is on the business end. 'Cause that's kind of coming up to me on the NIH and or the FDA when we're talking about... If I'll just say African Americans in particular aren't big enough participants in the trial, what incentives then are other communities getting that we are not getting, right? Because that's what it seems like there's a business model here. At the end of the day, it is there any validity to that? That the community clinic in certain areas isn't getting the same incentive to bring people in as in another area.
Rea Blakey: Let's go to Kareem.
Karriem Watson: Thank you Rea. And I would... Chandra, I will say it's less about the incentive and more about the access and awareness. For example, when you think about, there's a research type of study. When I was... Before I joined the NIH I was actually in university for 17 years conducting cancer disparities research. Those of us that are researchers, there's like a gold standard of research grant, you want to get called it NIH RO1. It's like the premier type of grant you can get. Once I got that RO1, I found out that I was in a category of less than one... Less than 1% of African-American researchers get these types of grants. And then the other piece of that that I learned about is that there's different tiers of research institutions. Like there's a research 1, 2, 3, and then based on that tier type of institution you are, that can determine how much funding you actually get to in order to do certain types of cancer research. I was talking to my colleagues about the importance of some work that's happening at Morehouse School of Medicine right now.
Because there's not one historically black college or university, even including the four medical schools, that is a research one institution. What that means is that they don't have equality and equity in funds to conduct the same types of cancer disparities research that you may have at one of your research one institutions.
Chandra Wilson: Why not?
Karriem Watson: Exactly. And those are the questions, Chandra, that I love that we're having is the why not? And so one of the things that you see happening at Morehouse, and I'm saying Morehouse, but the same thing is happening at Tuskegee. They are recruiting research, Tuskegee University recruiting researchers that can compete for these grants and bring in those funds. I'll end with saying one of my mentors, Dr. Robert Wynn at Virginia Commonwealth University just turned his cancer center from an NCI designated cancer center to a comprehensive designated cancer center. The reason that designation is so important is because that's going to allow him to provide more evidence-based cutting edge research to Virginian's across the state. He's going to be able to do greater outreach into the rural communities. He's going to be able to do greater access and awareness in terms of clinical trials because that new designation gives him new funds. Those funds give him more resources. He can recruit differently. Now he can attract different researchers. And you ask the perfect question is that why? How do we identify these systemic inequities that even exist and who gets the funding?
Keith Crawford: Right.
Henry Henderson: But -
Rea Blakey: Can I ask Henry to comment, because I think this really sort of drives home, Henry, where you live in regards to black researchers and the need to have people be aware of these very issues.
Henry Henderson: Exactly. And I was actually going to tap myself to hop in. So I mentioned at the top of the call, I co-founded an organization with my good friend [inaudible 01:07:12]. She's in the UK called Black in Cancer. And this happened during 2020 when there was a lot of unrest. Everyone was at home on the computer. So we really have a lot to do. We couldn't go outside. And so what we wanted to do is find common interests. And so when I began my postdoc, so I did my PhD at Tuskegee, and so I was surrounded by black researchers. And so it was really normal for me. When I did my postdoc, I went to an institution that was predominantly white and I was one or two black postdocs on my entire floor. And so I was like, "Oh, well I'm not used to this. How do we create more of these in these spaces so that I can be familiar and I can feel comfortable in the space too?" Not to say that I had a wonderful postdoctoral mentor.
So I realized that exact same thing was going on in the UK and with a Twitter DM message, we realized that cancer disparities, we talk about a lot in the US and the UK is a little bit of a taboo situation. They know it's there, but they really don't talk about it. But I didn't learn that until I met my good friend. So we started Black in Cancer for this reason, to increase representation of black people specifically in cancer related fields. We wanted at first to kind of stay within academia, but we didn't realize that, hey, there are black people that need to be in the clinic. We need people to run nonprofits. We need people to lead patient advocacy organizations. We need people to start 5K runs for cancer charities. And so we named it Black in Cancer to encompass all of the cancer workforce. And so by doing that, we came from two pillars. Number one, how do we educate our community? How do we simplify scientific jargon to make it digestible for our aunts and uncles? And number two, how do we get students interested in cancer?
We like it. We're nerds. We like to work on these types of things, but it's an exciting field to be in because there's so much change that can be made. And low hanging fruit. We decided to create two programs to actually do just that. Just recently in our... We've only been... Actually our third year is coming up in August. So we've been still fresh in our infancy, but we've been able to fund 28 students, 13 from the UK, 15 from the US to place them around the country in their respective countries at centers to get research experience. We know that when you go to medical school and when you apply these graduate programs, research experience looks really good on your application. So we eliminated that barrier by placing them and having them getting paid to be at institutions to actually get this research. And after that, after you've gone to college and things like that and you get into your grad program and you're in your postdoc and you want to run your own lab to focus on disparities, one of the things that you need to understand is that funding is really important.
And Kareem mentioned that black funders are, we're not funded at the same rate as our white and Asian counterparts when it comes to this. And so we decided to find some money to fund our postdoctoral researchers. And so we've able to award four postdoctoral awards, totaling a million dollars actually for them to go from their postdoctoral award, from their postdoctoral research fellowship into the [inaudible 01:10:03] so that they have that money to transition with no type of barrier at all. So they'll get 75K during their postdoc and then they'll get a 100K during their professor... Their faculty position. But that doesn't stop there either. How do we retain these postdocs? How do we retain the people who are running the labs? We have to give them more money. And so we created a distinguished investigator award that allows us to fund actual faculty members for three years, for a hundred thousand dollars each year. So having those supplemental funds to conduct these studies, to conduct the research, to diversify our trials, to create patient-friendly materials for education.
And so these are the things that we're doing in Black in Cancer. And I think everyone kind of spoke to it really beautifully in the beginning of the talk. Chandra, I meant Kareem mentioned the messenger matters. Chandra mentioned that we need more of you out on the block talking about this and this is what we're doing. We're creating the space so that black students and graduate students and medical students, people who want to run nonprofits, have the tools that they need to gain the education, to gain the tools and skills they need within cancer to educate our communities.
Keith Crawford: I wanted to tell you also that the state of Massachusetts Governor Healing is really pro at going out. And there was on the hill where they're looking at relationship between HBCUs to have them do internships in Massachusetts at some of the biotech companies that here at Mass. 'Cause we have a lot of biotech companies here. So they're some funds and they're really interested in doing that. Also, Harvard is looking at... So I did my postdoc, so I know when you're talking about you go to a floor where you're the only black person on the floor. I was the first black to graduate from the Department of Immunology at Harvard Medical School and it was... There was nobody there. So what Harvard is beginning to do right now is look at partnering with HBCUs and not just bringing students on, but how do they bring in and be...
PART 3 OF 4 ENDS [01:12:04]
Keith Crawford: ... bringing students on, but how do they bring in and beef up the research? That's why what Karriem was talking about was so important. It's very difficult. If you're not a tier one institution, you're competing with all these tier one institutions for these grants. And your grant could be excellent, but then they say, "Eh, what's the probability of them pulling this off?"
Karen Andrade: But I wanted to mention ... oh, Chandra, go ahead.
Chandra Wilson: And actually, but this is for you Karen, because I feel like if there's a place for government to be able to help, one of the disparities that came out for me during the pandemic was ... and after George Floyd and we were talking about inequities and the things that happened as a result of desegregation. Although desegregation in its idea is correct, when we took children of color away from their circumstance and put them into a new circumstance with nobody there that looked like them to take care of them, we ended up creating an assimilation and a loss of identity. It happens to the Native American community here. So while we are educating our people, and hopefully folks that are watching that get inspired by what you're hearing or that get inspired by Dr. Bailey and say, "I never would've thought of myself as a surgeon until I saw this doctor on television go into the field."
We also have to get people to stay in education so these kids have somebody to look at, right? Like what you're talking about Keith, what you're talking about Henry. That also encourages, right? And if government in any way can play a role in incentivizing the professors, the teachers, the doctors to stay in education so that kids have folks that they can look at and say, "I want to do that."
Karen Andrade: It's very complex, Chandra, because I will tell you that I also was one of ... in the predominantly white institution, and it's very, very difficult in multiple ways to thrive in environments that you have that have not been built for you. And that actually when you fail or when you start withering on the fact that this environment was not meant for you and that you're actually actively being asked to become something else, then the system blames you. So, it's very difficult and I will say that at the White House, I am surrounded by people that understand this deeply and that have, in many cases, come ... survived the systems and that understand them from a very lived experience just how many of these systems are not set for many of these wonderful, brilliant people that we're trying to bring.
As we often talk about pipelines, and they're very important, we are bringing them to systems into places that are not set up in multiple ways for them to thrive. And so I do believe that that is a very deep understanding that has permeated a lot of the work that we've done, at least at the Office of Science and Technology Policy. We've done a lot of work in thinking about science.
You've talked at length about the medical system and I see so many parallels to the scientific system. When we spend a lot of time thinking and encouraging our young students to become scientists but these scientific systems also need to be places where they are welcome, where they are set up to thrive when they're not the only ones. And we're doing a lot of work towards that goal. And so, not only building pipelines, but thinking about the systems and about the environments how we can actually create incentives, as you said, for continuing.
But also it's really hard to be incentivized to stay in a place that is slowly ... You know that it's important, but if it's draining and it's working against what you hope to do and the impact you hope to have, then I will say I also stayed as a postdoc and kept on trying and then eventually decided to try other places so that I could actually use my knowledge and my expertise to hopefully make a change for the better in many of these contexts.
But I will say that something that we're talking about funding, I wanted to highlight something that I mentioned actually last conversation we spoke with, Rea, when you invited me last time was focusing on HBCUs. And I wanted to highlight that the CHIPS and Science Act that was actually passed, oh my gosh, it was last year I believe now. Specifically authorized invest investments to, and this is a quote, "Expand the geographic and institutional diversity of research institutions and the students and researchers they serve." And the goal of that is to support historically Black colleges and universities and other minority serving institutions by specifically asking the National Science Foundation to address persistent funding disparities and federal grant funding opportunities. So the message is getting there. There's a quick, a very real understanding that this is a very real issue and it's having, as you just all heard, multiple ripples of effect that we need to, that we're working and trying and working to address.
Rea Blakey: So Gigi, I'm going to let you have the floor, but I want to remind all of our panelists that we're winding down on time. And so after Gigi makes her comment, we're going to start our wrap up. Each of you will have, oh, I'll say about a minute and a half, two minutes to get your final points across. And then unfortunately we'll be done with this particular conversation on cancer. Can you stand it? No, I can't either. Go ahead, Gigi.
Gigi El-Bayoumi: So since this is Black Fam Can, I'd like to talk about kids and I'd like to share my own personal experience. When I was in fifth grade, they brought two mannequins, one with cotton lungs that were black because of the smoking and one that was just regular cotton. And we had one hour where we learned about lung cancer. That one hour made me, in whatever it was, fifth grade, prevent my mom from smoking. And both of her parents had died from smoking.
I think that as we look at this whole ecosystem, I think it's important to look at kids, especially the middle school kids because they're not teenagers quite yet, and people will actually listen to them and they've got the knowledge and ability to be persuasive. And so, in a city such as Washington DC where in Ward 8, only 47% of kids graduate from high school, it's important to have these enrichment programs that expose kids to health and science, but more importantly, to train them to be champions within their own communities. Kids of that age can be extremely effective.
Richard Pazdur: Can I just follow up on that? We have a program here, which we initiated about 10 years ago now, aimed at students, high school students to bring them into the FDA over the summer, basically, to give them a course on drug development. And it's specifically aimed at inner city schools here in Washington, DC and Baltimore. And this was really an attempt really to get these children ... well, I shouldn't call them children. Adolescents involved with medical careers, so to speak, to see what is possible, so to speak.
Previous to that, this program was populated by the children of employees here at the FDA. So most of these children, or these adolescents, had parents that had MD's or MD/PhD's. They didn't need this program. They were already on their pathway to success, so to speak. So, we realized that there was a need here to select people, to bring them into the FDA to show them what are possible careers here. And I think that's an important thing and really kind of emphasizes what Gigi was saying, really, we have to educate people on what are potential careers because if people don't realize these careers exist or believe that they're out of reach, so to speak, they're not going to go to medical school, they're not going to seek careers in biomedical research. But I just wanted to bring that up because it was in reference to what Gigi was talking about.
Rea Blakey: And the program is called "Summer Scholars". You can look it up on our webpage.
Richard Pazdur: So, next year we'll be recruiting. We have already our students in line for this year.
Rea Blakey: Yes, for this year. But for 2024, remember "Summer Scholars".
Richard Pazdur: And it's specifically aimed at Washington schools and Baltimore schools.
Rea Blakey: Wonderful. Okay. Now we're into the wrap up session. Karriem.
Karriem Watson: Rea, I'm going to wrap it up with this importance of pipelines and talking about us addressing, making sure the pipeline is not leaky either. Similar to Dr. Gigi, I was first exposed to a career in STEM, science and arts, engineering, and math, through our urban league growing up when I was in junior high. They had a program that brought me to Morehouse College and connected me with a mentor that looked like me, that understood my lived experience. And we're doing that in All of Us research program as well. We start as early as high school working with, teaching kids how to code in R and Python, working with high school teachers. So I really want to encourage us all. And then also thinking about as Dr. Karen, my colleague in the government says, thinking about what are some of the incentives to do this work?
I was fortunate to do my postdoc in a place where I got amazing support. And that postdoc support actually allowed me to get some NIH funding to help pay back my student loans. So thinking about how can we encourage young scientists to know all the things that are there? And the last thing I'll say in my wrap up is the importance of ensuring that throughout our training process that our trainees are exposed to patients because I was trained in community based participatory research. So I had patient advocates by there with me telling me that my messaging was off, telling me how to communicate this. So my patient advocates were just as important teachers as my professors were to me because that's what helped me be a better researcher and a better scholar. And so making sure that we never forget about bringing the patient's voice to the work that we do is so important. So thank you Rea to you and the FDA and the OCE for all the work that you all are doing to spread this word.
Rea Blakey: Oh no. We appreciate everything that you do. As you well know, this is a group effort. It takes a village all the time. It's a global thing. Keith, I'm going to give you an opportunity to wrap up and I wonder if you wouldn't mind pitching for more prostate cancer screening?
Keith Crawford: Yes, I will. Thank you very much and I'm very excited that I'm here. I just want to say, you know, kind of fired up about all those lives that we're meant to touch. And this is something my father would say, "All the lives that you're meant to touch will never be touched if you're not there." And so we're all here and our objective is to touch lives. So I leave that. First thing, and you haven't heard it this way, prostate cancer is the leading cause of cancer in Black men. Black men die at twice the rate or up as high as 4%, or four times the rate, depending on which group you compare them to.
What causes the problem is multifactorial. There's an environmental component and one major environmental component was COVID. COVID had two phases. The first phase was a complete lockdown. Second phase, there was a recovery. But the problem is, Black men and other underrepresented groups have not maintained or made it back to the baseline. We were already underrepresented in the area of screening, but we're still lower than what we were before 2019. So there's clearly a need to push early detection screening. The earlier you detect a disease, prostate cancer, localized, the five-year survival rate is a hundred percent.
When you get cancer, you don't die from cancer in six months, but you got to detect it early. The 10-year survival rate is like 95% if you detect it early. So, that's what I want to talk about and that's what I want everybody to understand, that we have a lot of work to do. And one other thing I had was when I talked about clinical trials. With clinical trials, it can be done. There's work, there's a clear need for navigators, we can get patients to the door. But in that institutional system, which I don't call social determinants of health now, I use the term structural determinants of health because that structure that the patients have to go through play a key role in whether or not they're going to make it all the way through the clinical trial.
Rea Blakey: Exactly. Thank you, truly, for participating in National Black Family Cancer Awareness Week because I know you guys are doing a lot. And what you just said is going to get somebody's life saved, I'm sure. Gigi, final comments?
Gigi El-Bayoumi: Education is key. Effective communication is key. Our motto is having the community lead because as you just said, Karriem, it is the community that can keep learners, students, residents, and others, honest. And if you do that, then any of the education that people get in medical school or otherwise, which there's a lot of right now but there's no impact, will make a difference. I think what is so important for any of the clinicians or people that are in the healthcare system to remember is this is a calling for all of us on this call.
We have to constantly remind ourselves, no matter how burnt out we are or how disenchanted we are with the healthcare system, that we should be motivated by love. We love the people that we're serving. There are some people I don't particularly like, but I love the people that I'm serving. And let's not forget, it's not just the physicians, it's the medical assistants that put patients in their room that are often from the same communities of people that we're trying to reach. So education should not just be limited to people with letters after their names. But the most important thing that I will say, we're all spokes on a wheel where the patient, the family, and the community are at the center. And remember, #BlackFamCan.
Rea Blakey: There we go. Somebody said it. We only have two minutes left, but somebody finally said it. Karen, your turn.
Karen Andrade: Well, I want to be sure to make time for Henry too, also, and Chandra to say bye. But just, thank you. I know that I have been ... I heard the message loud and clear screenings and more. For me personally, I think it has been a wonderful opportunity to be here. But I also wanted to assure you that in the Biden-Harris administration, what we know is that we need to get closer to communities. We live that value and want to work in partnership and we're working to build systems and to create ... We envision our work and we know that our work ... we focus equity and science and technology as our goal. And just thank you for letting me be part of the conversation.
Rea Blakey: Thank you very much. Henry?
Henry Henderson: I'll keep it really brief. Number one, we need more representation of Black people in cancer related fields. That's just period. That's the end goal. So if you are a postdoc out there right now, the Black in Cancer Postdoctoral Award just opened up, it's due in August. It's 75k during your postdoc a 100k during your faculty position. Apply for that. Additionally, if you are in training and you are already a postdoc or a medical student or a fellow, I actually was a part of the inaugural FDA-AACR Oncology Educational Program. So, really invest in yourself to actually get those tools and skills that you need to make an impact in this field. And so I'll leave it at that.
Rea Blakey: Excellent. Dr. Bailey?
Karen Andrade: Hey, #BlackFamCan.
Rea Blakey: Yes!
Chandra Wilson: No, just a quick thing. Your family history does not have to be your health fate. So, let's bring our whole family in on things that we can do. I knew that cancer was high in my family, so on my calendar, my mammogram started at 30. My mammogram, my dental appointment, my physical, all of that. And big umbrella wise, I know that government is ... there's funding trying to get out into the communities in order to address where the disparities are and what seems like is coming up to me is that local community-based health could really use a position that specifically looks for grants, tier designation, and bringing clinical trials right there locally. That's a position, a nice little place for government to throw funding and say, "Hire this person here", in order to help affect this area so our numbers can get into the clinical trials the way they need to be.
Rea Blakey: Chandra, thank you so much for joining us because I mean, it really has sort of opened up the conversation. You asked some really key questions that allowed all of us, I think, to see things from a slightly different perspective. Rick, I'm going to give you the last word.
Richard Pazdur: I just want to thank everybody for participating. This was an enlightening conversation. We appreciate everybody's input and I think we've all learned a great deal from this conversation on cancer. To you Rea to close out.
Rea Blakey: Thank you all. Really appreciate it. Of course, this is the start of National Black Family Cancer Awareness Week, #BlackFamCan. We want to engage all the generations. Talk to all of your HBCU friends. Talk to your faith-based organizations. Talk to anybody you know who cares and make sure that somebody talks about screening. Somebody talks about cancer prevention. Somebody talks about reducing cancer risk in some form or fashion, maybe less sugar and fat in the diet to prevent obesity. We know there are obesity related cancers. Talk to people, communicate, show that love that we claim we all have and help impact somebody's life in a really positive way. Again, thank you so very much. I know we went over just a hair, but this was good, wasn't it? All right. Thanks everybody. #BlackFamCan.
Richard Pazdur: Bye-bye.
Rea Blakey: Bye-Bye.
Keith Crawford: Bye.
PART 4 OF 4 ENDS [01:32:38]