Rea Blakey :

Hello and welcome to the FDA Oncology Center of Excellence Conversation on Cancer. This is our fifth annual Conversation on Cancer, specifically commemorating Black History Month. It's entitled 'What's on the Horizon? Historically Black Colleges and Universities in the Future of Cancer Care.' I'm Rea Blakey, I'm the Associate Director for External Outreach and Engagement at the Oncology Center of Excellence. And our panel will be discussing a number of important issues today, including managing community care and the cancer burden and oncology resources, as well as amplifying the needs for cultural competence, which I'm sure we could spend all day on. Also, the importance of clinical trials, another huge area where there's just not enough engagement. So we want to address that today, but we also want to be cognizant of the part where there needs to be a little bit of context presented today. And my co-moderator, Dr. Luckson Mathieu, will provide you with that. Luckson, welcome.

Dr. Luckson Mathieu:

Thank you, Rea. I am grateful for the opportunity to co-moderate with you this important and very timely Conversation on Cancer. I'd like to coin it the Black Month History Edition. So before we go any further, I would like to briefly establish the background and the context of our meeting today. So if we quickly jog back our memory back in 1837, the first institution for formerly enslaved African Americans was created to teach some basic skills such as reading, writing, and arithmetic. A little over a century later or so in 1964, the Civil Rights Act was passed, and at that time, several more, it was coined at that time predominantly Black institutions, PBI, opened up and the attempt was to educate and uplift African Americans educationally, socially.

Now these PBIS are known today as HBCU, Historically Black College and Universities, and there are currently about 107 HBCUs in the United States. Between 1968 and today, there were 19 different HBCUs that have been open. However, only four with the promise of two more is currently open and is fully operating right now. We are so privileged to have leaders and representatives from these four HBCU medical schools with us today, and so we're really excited to talk to them. One last fact is that over the past five years between these four medical schools, HBCUs, over 50% of African-American doctors are coming out of these four schools. So I'm going to pass it back over to you, Rea, as we continue with some context here.

Rea Blakey :

Thanks Luckson. And just for context, you're one of them and we're grateful to have you at the Oncology Center of Excellence. We consider ourselves pretty well rounded at OCE, which is our acronym, Oncology Center of Excellence. We want to make sure that we include all who want to be included. And so with that in mind, we thought we'd go a little bit outside the boundaries today. So we've mentioned we have the HBCU Medical School leads here with us and we're thrilled about that. We also have a representative from the White House who will be talking to us a little bit about the Cancer Moonshot and STEM programs in particular, we have a fantastic cardiovascular surgeon who has a very strong role in the Black community and also represents another HBCU. And we also have big thrill, Stand up to Cancer Celebrity Ambassador, Sonequa Martin-Green, who is joining us.

I do want to start with Sonequa, but I want to make sure that we have all of the other panelists introduced. So at this time, we're going to ask each panelist individually to take just 30 seconds to give a little bit of background about why you are on the program and for the folks who are watching in the audience, there is a bio sheet that is extensive with all of the fabulous accolades and achievements of the folks on the panel. We're very, very thrilled about how well we've been able to curate this panel. But I'm just going to start randomly with just quick introductions, one minute or less. Please, Donald?

Donald Alcendor :

Yes, my name is Donald Alcendor. I'm an associate professor at Meharry Medical College and I've been working in cancer for some time, particularly HIV Associated Cancer, specifically Kaposi Sarcoma. I did the work at Johns Hopkins where I was in viral oncology. Currently I'm working with the Tennessee SEAL Program. I'm the director of research for the state of Tennessee NIH sponsored Community Engagement Alliance against COVID-19.

Rea Blakey :

Thank you. Karen, welcome.

Karen Andrade:

Hello, happy to be here, Dr. Karen Andrade, I'm a senior policy advisor at the White House Office of Science and Technology Policy in the inaugural Science and Society team. And so I'm happy to be here to join you all and to also chat about what the administration is doing both in the Cancer Moonshot work, but also in STEM careers and the STEM ecosystem and how to build an equitable and just STEM ecosystem. So happy to be here today, Rea, and everyone.

Rea Blakey :

Thank you, David?

David Carlisle:

Well, hello everyone, greetings, great to see everyone. I'm David Carlisle and I'm the president and CEO of Charles R. Drew University of Medicine and Science in Los Angeles. And we're very excited to be here in this panel. And I'll just say we're going through an institutional inflection because we've operated a two year-two year program in conjunction with the Geffen School of Medicine at UCLA for 40 years, CDU just will be matriculating its first class of new medical students into our own new medical school in the fall of 2023, so just a few months away. Very happy to be here. And the CEO is very involved in oncology research.

Rea Blakey :

Congratulations on that. Sonequa, welcome. Oh, I think you might-

Sonequa Martin-Green:

Thank you so much for having me. I'm Sonequa Martin-Green. I'm an actor, I'm a producer. I'm the first Black female captain and lead in the Star Trek franchise. And I have been a part of Stand Up to Cancer for some years now, just dropping like coins in the bucket here and there but I really want to do more and I want to be a fly on the wall. I am in the presence of great geniuses and I thank you all for not just for your genius, but for your heart and for your passion, and you inspire me, all of you. So I just am very excited to listen and see what I can do if there's anything I can do. I also lost both of my parents, my mother had cancer three times, she ultimately passed from a heart attack and then my father passed from liver cancer a day apart and cancer's rampant in my family, so I have that connection as well to want to do something.

Rea Blakey :

Your being here is doing a lot already because I'm sure there are lots of people who are saying, "Is that really her?" And yes it is, we got her. She's here. And so she's joined our panel. Thank you so much. But you talk about the caring as well as the genius, that leads me to Stephen Noble. Hey Stephen.

Stephen Noble:

Hey Rhea. Hey everybody. Good afternoon. I'm Stephen Noble, I'm a board certified cardiothoracic surgeon here at Chesapeake Regional Healthcare here in Chesapeake, Virginia, where I serve as a medical director of the lung cancer screening program. I also have a clinical focus in robotic-assisted lung surgery. I also am the author of the children's book, The Heart of the Hero, the story of Dr. Daniel Hill Williams. And I serve as medical director or medical advisor for Live Chair Health healthcare startup organization looking to impact healthcare disparities of people of color, leveraging the community places of safe trust. I'm also a graduate of Xavier University, proud HPCU graduate. Pleasure to be here today.

Rea Blakey :

Thank you. Brian, how are you today?

Brian Rivers:

I'm doing well, Rea. Excited to be here. Good afternoon everyone. Brian Rivers, professor in the Department of Community Health and Preventive Medicine, also director at Cancer Health Equity Institute where we're leading in the creation and advancement of cancer health equity. I'm a cancer disparities researcher by training and NIH funded investigator as well as an American Cancer Society investigator. I look forward to having a great conversation really detailing how we are working to train the next generation of culturally competent clinicians as well as researchers.

Rea Blakey :

Excellent. And speaking of culturally competent clinicians and researchers, hi Carla.

Carla Williams:

Good afternoon everyone, I'm joining you from the campus of Howard University in Washington DC where I serve as the interim director of our cancer center. And our founding and continuing mission has always been around cancer, health equity, cancer disparities, and now what we frame as health justice. And I also happen to be a big Star Trek fan girl.

Rea Blakey :

Well Carla, let me just ask you, because you were the last to introduce, would you like to have the first shot at a question to Sonequa anything in particular?

Carla Williams:

Absolutely, and I think I would start with, because I think we share something besides a love for what the Star Trek world really has brought to our imaginations, but you mentioned your family history and I also have significant family history regarding cancer. So I guess what for you would be something that you would like to see brought to that space around helping people be aware of family history, being able to do something with that information?

Sonequa Martin-Green:

That's a wonderful question. I feel like awareness, it's multi-pronged, right, raising awareness? But I think what is missing in my humble opinion is access to the information. I think that obviously we know about the disparities in our community and the Black community, and even if you just isolate my family, it's not just my parents. My one of my sisters is battling right now and all of my maternal grandmothers, brothers and sisters, every single one of them, also my paternal aunts and uncles, it's just everywhere.

But I think that that's the case with a lot of Black families and especially in the South. But my family wouldn't know where to go to learn about any of this. They wouldn't know where to go to learn about clinical trials. They would say, "What you want me to do, you want me to go what? What site? What?" It's like it needs to be more palatable for them. It needs to be presented in a way that, dare I say, is entertaining, that catches their attention and their focus. And then it also has to just be logistically more available as well, I think.

Rea Blakey :

Sonequa, I'm going to have to take this opportunity to thank you for participating last year in #BlackFamCan, which is the social media campaign that we did here at the Oncology Center of Excellence for a National Black Family Cancer Awareness Week. And that segue was just so beautiful that I couldn't resist because the opportunity exists there for all people to share information. Obviously our focus is to make sure that Black families in particular have as much information as possible, but we also want it to be a week in which people can use whatever resources, whatever approach, however they want to disseminate information to their networks, have that opportunity to have those family discussions, to engage the generations to make sure that there are awareness campaigns that meet people where they live.

We really wanted to be community-based and I have to confess that I don't think we would've been as successful last year had you not posted for us on Instagram. By the way, ladies and gentlemen, at that time she had 1.2 million followers so that kind of boosted our numbers, if you know what I mean. So we're hoping that we can ride on the wings of your advocacy again this year. But point being that everybody has a role to play, right? So Luckson, and I'm going to hand it to you to move things forwards here, but I think that is kind of the theme of today is we all have something we can contribute, whether it be at an HBCU in regards to the future of cancer care or if it has something to do with, for example, STEM programs and the Cancer Moonshot. So Luckson?

Dr. Luckson Mathieu:

Yeah, sure, absolutely. And just kind of following up on that, when we talk about the next generation, we talk about the future. If we're talking about the future, we have to talk about students, the next generation. Karen, I'm going to bring you into the conversation. Can you talk to us a little bit about what efforts that are currently going on or recently been going on in regards to increasing awareness of minority students involvement such as STEM programs and also cancer careers in your line of duty?

Karen Andrade:

Absolutely. Thank you, Luckson, I'm so happy to chat about that. And actually, this is work that is happening now and has just really started to not only get through the momentum, not only become about saying what we want to do, the visions that we want, but also taking action. So this last December, the White House Office of Science and Technology Policy actually released a vision. It was authored by the wonderful Dr. Alondra Nelson, who I hope will listen to this conversation in the future. And also our team, our science and society team, which is titled Equity and Excellence, a vision to transform and enhance the US STEMM. So includes science, technology, engineering, mathematics and medicine, and it really frames us as ecosystem.

And the really vision really starts from the concept of really thinking about all parts of an ecosystem needs to be healthy in order for all to thrive. So at the very beginning, it names the need to tear down institutional barriers which have long stood in the way of equitable participation in the fields of science, technology, engineering, mathematics and medicine, and that have prevented the American innovation ecosystem from really achieving its full potential.

So Luckson, central to this plan really is increasing awareness, pathways and also changing institutions so that we can increase minority students' involvement in STEM programs and medical careers, of course, including cancer. But also we know, and I know this also in a personal way, that it is essential for the institutions to really be there to change it, to really drive for institutional structural change so that these young students when they arrive, they are really in a context where they're set to thrive. And I know this, I was actually at a medical school of a leading academic institution, and I can say that it was really a time where I felt it was actually a medical school, but I felt so personally and professionally isolated. And this was in great part because not only was I a young parent, but also there was very limited support for the very few Latino postdocs that were in the room in those rooms.

So Luckson, we're working to increase pathways and to make those more available, that they have very better funded, that they have more sustainable funding, but also want to make sure that we're working towards a structural change so that those students can thrive. And so that's not only one of but the vision, but also we launched this past December a summit, we had a summit where we coordinated over $1 billion of promised public and private funding to focus on promoting science literacy, access to STEMM education, addressing shortages of STEM teachers and really mitigating bias and discrimination and harassment in the STEM workforce and providing data collection and improving data collection to improve accountability across the STEM ecosystem. And that's just the tip of the iceberg of what we're doing over here at the White House.

Dr. Luckson Mathieu:

I think we all would say we appreciate that heavy lift that you guys are all doing. Just to add, just one other question I have for you, Karen, is you talk about your experience as a graduate, I'm going to say Mahari number one, all right, establish that. What is your experience in regards to the relationship that you have with HBCUs in regards to cancer screening and prevention survivorship? What work are you guys are doing there? What's going on there?

Karen Andrade:

So what is very unique about this Cancer Moonshot is that, well, it has a very clear goal, which is to cut the death rate from cancer by at least 50% over the next 25 years and improve the experience of the people and their families living with and surviving cancer. So that approach, as you will know, is really focused on the patients and their caregivers and access to the medical systems and preventative measures. So that has been the heart of what this Cancer Moonshot is all about.

And so the place that I believe that this work is led by seven actions that are listed on our website. But the two crucial ones I want to really bring up that I think really focused on the intersection with HBCUs, the first is, the number one action that we're working towards is first to address inequities. And we're doing this by really taking in and understanding that cancer is a disease for which there are stark inequities in access, from cancer screening and diagnostics to treatment and support. And that those inequities are really across gender, race, region, and resources. So the administration is really aiming to ensure that all communities in America, rural, urban, tribal, and everywhere else have access to the cutting edge cancer diagnostics, therapeutics, and clinical trials.

But the second is to really, and I think it's essential to learn from all patients. So that's the second action item. To really do that, we know as an administration that cancer is a disease in which we don't learn enough from patients. And so if we can turn our cancer system and the way that we've been calling it a learning system, because at the end it is amazing that we know that when cancer patients are asked to help with their experience, to make their data available, to help those to future research, it can be done and they're oftentimes willing to do this. But we also know that it has to be done with respecting privacy and ensuring the safety of that data.

So what we know is that all of this work is impossible without community engagement. And so we've been doing that talking, so the Cancer Moonshot team wanted to be sure that I mentioned that they've had both the Cancer Cabinet, which is an inter-agency group that is charged with this work to really try to push this forward through the agencies, through many of the federal agencies and the Cancer Moonshot team, they've been having over 50 conversations just in the last year in diverse communities. And that's just the beginning. We had the STEM equity round tables that were hosted by OSTP and my organization within the White House. And as I was mentioning earlier that in every single case, we're aiming to bring the voices of not only of the communities that are on the ground, and that's where I think the intersection is and can be with HBCUs. And, yeah, we're really in the beginning of that work, Luckson, but it definitely has deep roots and we're making sure that they're in the community as well.

Rea Blakey :

Karen, I'm going to try and open this up a little bit more to some of our other panelists, but that was really good information. Stephen, I saw you nodding along the way. Wonder what you'd like to add in. And then Donald, I'd love to hear from you after we hear from Stephen.

Stephen Noble:

I appreciate it, Rea. I think Karen made a great point as far as cancer as a learning system. As providers, we need to engage our patients. We need to ask them to participate. And oftentimes we find that when we do ask patients to participate, whether it's given information, asking about their experiences, there's so much information that we can gain. Anecdotally, I've had patients come to me that stated that they had to encourage or impress upon and urge their own primary care provider to do a screening test to get that lung cancer screening CT scan or to get that colonoscopy, although they didn't meet traditional criteria. And so part of that sort of learning is really understanding what patients go through so that we as a healthcare system can really try to tackle those barriers where they may be. Sometimes it's education from a provider's perspective, but also it's education and not really knowing what our patients are going through to get to where they need to go.

Oftentimes I can hear we in the community, in the medical community say a patient is non-compliant. Well why is that patient non-compliant? Do we understand what sort of barriers that they have to go through to kind of get the test? Do they understand truly what chemotherapy does, what immunotherapy does, the need for all these imaging studies, surveillance, CT scans, things of that nature? And so Sonequa made a great point about trying to educate but doing it in such a way that it's fun or entertaining. And I think that the onus is on the medical community to really try to break down the nuances of cancer care in a way that the patients can understand it.

To that point, I think it's very important for all patients to bring a family friend or somebody with them when they come to their visit so that you have two sets of ears in the room really listening to that sort of conversations that's being had. The patient is getting a lot of information a mile a minute, so it's that other person that's in the room that can really take the notes and can help kind of decipher what's going on, because all too often patients are missing about 50% of any information that is given to them at that...

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Stephen Noble:

About 50% of any information that is given to them at that cancer discussion or that patient visit. So it's really incumbent as far as all of us to be involved, both engaged as far as education, but having those conversations and really asking our patients some questions that all too often we don't really get down to brass tacks about.

Donald Alcendor :

Yeah. So good afternoon. Thank you for having me. I guess I want to talk about things from people on the ground. I think if you're going to move any initiative, you have to move the community. It means that you have to move the community and at some times you have to move them where they are. So you have to go where they are. You have to participate in things they care about in order to move those communities.

And so the first thing I think you have to do is educate the community. You have to have certain people that's going to do that for you, because the community doesn't listen to everybody. And showing up in a white coat doesn't give you privilege within the community in terms of having their ear. And so I think what you have to do is partner with people in the community, the so-called ambassador networks that you can. You have to partner with CBOs that have been in that community 25 years, 30 years.

I can tell you now we have seen where people that don't have a formal education can step up and make gains in the community that we could never have. I have seen pastors, and they are in control when it comes to their congregation. And if you want something to happen in that church, hence happen in that community, you have to engage these pastors and they will help you with that. And so the pastors want you to come to them in earnest as well. You have to come to communities in earnest with the understanding that we are going to help you help yourselves, and we're going to provide you with education. We're going to provide you with awareness. We are going to give you opportunities to navigate within that community to the healthcare system.

But many times on the ground, you have people that don't have insurance. And I think when you're trying to offer a community an intervention, whether it be a survey or a screening test, you have to meet the immediate needs of that community before they have the conscious mind to listen to what you have to say. And so when it comes to Ms. Sanequa talking about cancer in the family, so the medical history, a lot of people don't understand that genes control just about everything in your body. You see what I'm saying? And they control whether you will develop cancer in some ways as well. There are a number of spontaneous cancers that happen, many of them controlled by dysregulation of genes, by genetic alterations that lead to the over expression of certain proteins that can result in a transformed phenotype in a cell that leads to a cancer.

And the idea is that cancer, as we know, it doesn't go away. Cancer doesn't take a day off. You see what I'm saying? And so the idea, the longer you wait to get treatment, and again, we know that many people that need this treatment are in circumstances at home that doesn't allow them to leave from a day of work to go and get screened for their cancers. And when you think about the immediate needs of some people, their families come first, and a lot of times they put their health and wellness second to that call. And so all I'm saying is that meet these communities where they are, address their immediate needs, and through these trusted messengers, you communicate with them.

Dr. Luckson Mathieu:

Yeah. This concept of not applying this helicopter approach where you fly in when you need something and then you fly out and you come in, that never works. People are real, they keep it real, and they can spot that a thousand miles away, and they don't want to have anything to do with that. Again, I learned that at Maharry.

But let's just move further in the conversation. Let's bring everyone in now, and it's wide open popcorn style. I'm going to bring up a topic and let's just chew on it a little bit. So enrollment and clinical trials for minority population has a complicated history. We all are aware of the disparity gaps in clinical trial participation for minorities here at the FDA, the Oncology Center of Excellence, we have several initiative addressing disparities in clinical trial participation, whether we are talking about project equity or we're talking about the diversity plan guidance. And so we're trying to do some of our part over here.

What I'm going to post to the panel here today is how are you as the representative of HBCUs, medical schools, addressing this cancer disparity when it comes to clinical trial enrollment? And I think I felt like there's been a good amount of exposure of the gap. If I read one more publication about cancer disparity exists in clinical trial enrollment, I'm going to go crazy, but I'm more interested in the intervention. I remember back in medical school, I remember reading a paper ahead the past 20 years of proven interventions for clinical trial disparities. How many years later do we have. What I want to know is what are some of the interventions that you have? And, Donald, you've already started talking a little bit about that. What are the interventions that work for you guys that could become a blueprint for a lot of other schools or organization or even pharmaceutical companies when it comes to enrollment of clinical trial patients of minority background?

Donald Alcendor :

Yeah, I'm a big believer of starting early, and I don't think you're too young to understand the importance of clinical trials. You have to make people understand very clearly what clinical trials are, what the intent of a clinical trial is going to do. And many people want to know exactly what will be important that I will get out of a clinical trial. That means when a clinical trial is completed, dissemination of that information into the community is absolutely necessary. And so you have people, a lot of them that would participate in clinical trials. They don't know anything about a clinical trial. And so what they have in their mind is a tremendous amount of misinformation that you have to deal with on the front end. And the idea, if you don't deal with this misinformation, then they won't budge.

Again, you also have to have people that will set examples. And what I mean by that, you have to bring somebody in from that community that has gone through cancer and gone through a screening procedure and can sit down there and tell them that firsthand, somebody just like them, that they know, that participating in a clinical trial and is willing to tell that personal perspective to an audience. That can be in a town hall meeting. That can be at an event of some sort. And of course there are all sorts of clinical trials.

And when you talk about kids, you're talking about vaccine preventable cancers and they're out there. And we know HPV vaccines are very important. And the idea is that what I do personally is that I go out into the community and speak. I go to the church and spend time with the church folk, and then after the session is over in church, the pastor will give me 10 minutes to deliver my message on cancer, on Alzheimer's, or whatever kind of interventions we're trying to establish with the congregation.

And after that is done, if you want to get something out of that community, whatever it is you're trying to needs to be in the vestibule of that church before they've had a chance to change their mind. My understanding is that you have to oftentimes go where people are not. And you have to get there in ways that are unconventional. And the way we do it is we have a mobile unit that goes out into the community to deliver this information. And of course we partner with Matthew Walker where they have a large mobile van that can actually do mammograms and different types of screenings to support the health and wellness of these communities that are in need.

Rea Blakey :

Donald, thanks for mentioning that. I have to think about how often people think there's no way to even prevent cancer. And that's part of cancer awareness. A lot of things that have to do with diet and exercise and lifestyle choices, not smoking, not drinking, those kinds of things impact, potentially, whether or not one is at greater risk for cancer. But even that basic information sort of has to be reinforced repeatedly. Back when I was in journalism school, you had to tell people something seven times for them to actually believe it. And that doesn't necessarily mean that it sticks, but while they're in the vestibule, as you say, while it is sticking, maybe that's an opportunity to try to get another layer of depth about that cancer awareness and so forth.

Brian, I know you have a lot of information about what works at Morehouse and how you've been able to incorporate the community. You've been working in this inequity field for a long time. And then of course, we absolutely want to hear from Carlin David as well.

Brian Rivers:

Yeah, excellent. Thank you, [inaudible 00:32:35]. And just building on what has already been said, I think the commonality is just understanding the importance of trust and how trust is a multidimensional concept. I think Donald eloquently displayed it through his examples of the engaging the community, whether it's faith-based organizations, and then how do you engage those faith-based organizations in a respectful way? Well, whether there's other community-based organizations that are in the community in which you're looking to target individuals, extremely important.

Here at Morehouse School of Medicine, we're known for our social mission, our connectivity to the community. We're located in the southern corridor of the United States, and I think we're all familiar about the historicity of events that took place at the Tuskegee University. Now there's some data that suggests that some individuals still remember what happened. And there's a multi-generational effect that we have to address when we go out into the community.

So in our work, and we've recently been funded through the National Cancer Institute and introduce cancer health disparities partnerships to advance cancer health equity, to really sort of better address increasing how we increase awareness, how we educate our community, realizing that while of course information about a clinical trial is extremely important, we found in our catchment area that others just want to know about the bioethical framework that you're employing with them. If I participate in this research study or in this clinical trial, tell me how my information will remain private or how my data will be kept confidential? Or what's the return of value for my participation?

And oftentimes we go out in with very high expectations that we're going to go out and we're going to educate all these individuals about clinical trials, and then we're going to see an uptick in enrollment, but more so the patients just want to know, one, can I trust you to keep me safe and to keep my family safe?

And so we've taken a different approach and we're not only focusing on key strategic outreach strategies, but then we're also looking entry strategies as well. And so I have to give a plug to my good colleague Robert Wynn, who is over the Robert Wynn Diverse Career Development Award in partnership with American Association for Cancer Research that are actually on their third cohort of training clinical trialists. And a lot of these clinical trialists that they're training are from underrepresented communities. Those communities that have historically been disproportionately impacted by cancer.

And so taking an approach, not just at the patient level, but then also looking within our cancer ecosystem, especially within health systems and seeing what transformative approaches we can put forth to better understand what are some strategies that work. So training individuals from impacted communities as clinical trialists and then placing them back because these individuals, as the data suggests, are more likely to go back to their respective areas of where they were raised, where they were reared in practice.

And so taking this multi-level approach I think is something that we're going to see more and more of. I know the National Cancer Institute recently had a tremendous initiative on connecting populations to clinical trials, a tremendous initiative that is really purposed to have this multi-level approach to engaging communities and transforming health systems all hopefully while moving this narrative from, oh, it's been 25 years and we're still seeing less than 10% of racial ethnic minorities participate in trials. When is enough going to be enough? 1993, I think the issuance came out mandating better representation of racial ethnic groups, especially women, in clinical trials. And so we have to begin to move the needle forward.

I know Carla's doing very similar work as they have very similar funding mechanisms that we have really trying to better understand how do we employ community engagement strategies in a way that really address the multidimensionality of trust?

Carla Williams:

And I'll add on to what Brian said with two points. And the first one dovetails around the issue of trusting and engaging communities, but I would be remiss and I would get my card pulled, so to speak, as a leader around community engagement if I didn't echo what our community advisors consistently tell us and this is you can look at the American Association of Medical Colleges' work on trust and trustworthiness with institutions.

And the concept is very simple, is that people are experts in their own lives and we have to recognize and honor that to build that trust. If we are dismissive of how people express their needs and concerns, then we're not going to build trust. So first and foremost, while there is medical expertise at the table, we have to recognize and honor that people are experts in their own lives and what's going to work for them.

And when we start listening to that, then we can get to building a clinical trial's infrastructure that works for people. Before we started, we talked about some of the challenges of living in a rural area or even in an urban area, having access. So if you build a trial where there are too many visits or it's too complicated because we haven't listened, then that's going to create an automatic barrier. So I think we have to look at how we are contributing to structures that are going to facilitate engaging diverse communities.

And I think the second point I wanted to make around the workforce, particularly here at Howard, what I'd like to see come online soon is that we talk about what we call principal investigators, the physicians, and we definitely need to train them, as Brian said, and have people who are situated in the communities who can open doors and pathways for participation.

But that's not the only role in the workforce. They're pharmacists, they're nurses. They're administrators, they're data scientists, they're business and business officials who have to organize all of these activities. And so I think that's another thing that HBCUs can bring is that we can fully diversify the workforce so that from end to end, we're seeing that diversity. And what happens again, is that people are bringing their lived experience. And so if I'm doing a budget for a clinical trial and I know that they're going to be transportation barriers for our participants, guess what? I'm going to build that into the budget. But if I haven't experienced that, then it may not be top of mind to do that. So I think we need to really think more broadly about what we talk about when we talk about diversifying the clinical trials' workforce.

Dr. Luckson Mathieu:

David, I'm going to bring you in to the conversation and pick your brain a little bit on your thoughts on what we've shared so far.

David Carlisle:

Well, I appreciate that and thank you very much. And I think you hit on a key word that I was going to speak to you, and that word is shared or share. And as I'm listening to the comments this morning, I am struck by the commonality of perspectives here or reach us focusing on unique aspects of our programs. Basically, I think we could almost take the same statements and exchange them from, or move them from institution to institution, and we would be saying many of the same things. I think if we're talking about clinical trials and increasing the effectiveness of clinical trials, listening to what the HBCU medical schools have to say is a critical component we're delivering on this topic. If we want to expand this success, one thing that I would strongly recommend to our federal partners is to expand our footprint.

We know what we're talking about, we know what we're doing. We know how to make it work. We can do even more, and we can do more in our local communities and we can do more nationally. So I would say that our collective institutions, including others such as Xavier, for example, represent some kind of the special sauce that can bring clinical trials to the people who need them more and bring people to participate in clinical trials more as well. I would listen carefully to the messages here and just think of if there were twice as many people in institutions who are actually working in this regard. And that's why I look for other institutions who are very, very active with new medical schools such as Morgan State, such as Xavier. This is going to make a big change.

I would say also in terms of the pipeline, we do need more medical scientists of every type, and this includes not just physicians, but even laboratory science individuals. And if I was to want to invest long term in expanding the clinical trials' infrastructure, it might be to invest in each of our institutions to produce more laboratory scientists who can do the work supporting the clinical trials. Just a thought there. So thank you very much.

Rea Blakey :

David, thanks for that. Sanequa. I couldn't help but notice that you were fist pumping and, yeah, right on, and power to you, and bring it. Yes, baby, all of that. What are your thoughts about this concept of trust being really at the core of what we're trying to accomplish?

Sonequa Martin-Green:

It's all been so eloquently, comprehensively said, from everyone. That's the root of it really. As far as clinical trials goes, I think the root is that distrust, and that engagement that needs to happen. And this is so exciting to hear about the things that are happening, even Black Fam Can, encouraging those family discussions as well and going to people where they are, like Donald said, and also having those culturally competent clinicians coming up. Also, it's what everybody has been saying, it's so invigorating to hear all of you and to hear the work that is being done. And David was just saying to hear that we all are sharing in this perspective, it makes me excited and my mind starts to go of all of the sort of creative opportunities that we can have going, like Donald was saying, going to churches, utilizing the HBCU campuses, and I start to think about all kinds of barbecues and performances and things, but also having those people that have been through it to say, "Hey, I'm just like you. I did the trial. It was great." Also, that confidentiality.

All of that distrust at the root of it, to me, it almost seems like, at least with my family, I'm going to be brutally honest, it feels impossible with my family to build that trust, where if they knew about a clinical trial and they had access to get there, the mobile units, they were able to be transported to where the trial is. I would be concerned that they would never trust it, that they would say, "Nah, no, thank you. I'm not getting involved in that. I feel like it would be dangerous for me and my family." So I understand that it is something that will take time and will take, you have to come at it from a lot of different angles. I understand that, too. But this conversation is very hopeful for me. It's very, I don't know, it's innovating and inspiring and I start to think about the possibilities, and I'm also dramatic. So it kind of is what it is.

Rea Blakey :

Which we love.

Sonequa Martin-Green:

My bad. I'm [inaudible 00:45:25].

Brian Rivers:

Passion.

Sonequa Martin-Green:

I feel like I'm growing and expanding as I'm listening.

Rea Blakey :

Well, listen, obviously the work that you do being dramatic does kind of cross the bridge because let's face it, a lot of people are not medical. They're not sitting around thinking about cancer awareness or anything that has to do with genetics or cells or phenotypes or anything else. But they will potentially watch Star Trek Discovery and see the first African American captain who is in command of the ship and everything else that she participates in and say, "Hey, there's an opportunity where I could be a leader in science."

PART 2 OF 4 ENDS [00:46:04]

Rea Blakey :

Hey, there's an opportunity where I could be a leader in science, but I hadn't thought of that until I saw Sonequa doing it. So trust me, the work that you're doing makes a huge difference and it is important for people to know that you have a vested interest as a celebrity ambassador for Standup to Cancer because it crosses all medium.

Donald Alcendor :

Yeah, I wanted to say something about the diverse workforce and I want to use my example as a part of that. Again, most of us on this panel have come from HBCUs and when I started in microbiology, I had an African mentor and he made us all call each other sir in the laboratory because he wanted us to have respect for one another. He told us that the books read the same and the difference is how bad you want it. And that means using a flashlight, riding a bus 60 miles one way to go to an HBCU college. And it was all said and done. I think when you think about it, the struggles in your life make you who you are and you're defined by that. And those struggles, depending on what they are and how well you're able to accept them, as you go forward in life, no matter how much that struggle might be, you're able to handle it.

Because see, many times you have to leave that HBCU environment and to go into majority schools to do it. And when you go there, you're the only one like yourself in every classroom. And so you have to survive that. And the struggles that you had at that HBCU allows you to do that. It allows you to believe in yourself and it allows you to deal with all of the little things that might happen to you in that environment. And overall, it strengthens you and it becomes your foundation. And remember, your foundation is what you look upon when you're at your worst. You know what I'm saying? And I think the HBCUs did that. And again, when I think about it, being at Johns Hopkins was great, but I bumped my head on the ceiling all day long and coming full circle back to an HBCU, I got my greatest opportunities.

And so I'm saying that everybody doesn't have an opportunity to go to a magnet school where STEM education is something that's emphasized, but you have to think about everybody when you're thinking about a plan, you see? And if you want to do something about the next generation, you have to reach down for those young people that have no direction, many of them having no parents, you know what I'm saying? And so they struggle with that.

And so I think what's important is that for a diverse education, a diverse workforce, you have to develop the infrastructure for that to happen. And you might ask yourself, do we have that now? I would suggest that we don't. I heard a pastor from New York City tell me that, "In New York City, by the time you're 15 years old, you know if you're going to jail or you're going to do something else with your life." And that's very hard for me to hear for a young person like that to make a hard choice like that in life. And I think for this workforce, you need to create policies that will put plans in action and they have to be all encompassing and you have to be committed to that goal. That's all I wanted to say.

Dr. Luckson Mathieu:

I can relate to that a lot, Donald. I'm born and raised in the inner city Miami, Overtown area, and then going off to Harvard, which is completely different. I had one white guy in my entire school of 2,600 and then I went to Harvard in Cambridge and then trickled down to Tennessee and went to Meharry where I found family again. And it just felt comfortable. And Donald, you know all about this in regards to the late Pam Williams and the structure that she had. There's a model there that says, "Worship God through service to mankind." That was pushed from day one when I walked into the halls of Meharry and to this day, that still rings in my head the importance of serving others. And this ties with the work field diversity, it's a tricky place when I think we say that everyone should be comfortable with anyone they see as their provider.

I mean, that's great, that's the ideal, but that's not the real. So that doesn't happen. I think when you have a diverse population and a work field that is representing all walks of the field, like physician, nurses, patients are going to feel more comfortable, just the reality, with people that look and sound and talk like them. So we can keep living in this ideal world where everybody's supposed to be comfortable with everybody or we can get real and say, "You know what? We have to increase this diversity in the work field and we have to be mindful." I heard the other day someone said that, "It's a business decision, it's in your best interest as a business to have a diverse population." If you don't want to understand from a human altruistic, then put money involved. Your business will do better if you have a diverse population because you're going to be pulling in more people that feel more comfortable with your product.

So I think we just need to move forward and accept the real that people will feel more comfortable, people will more likely enroll in clinical trials if they see someone that they can trust. If someone has a different background, they can even relate to them outside of the science, that they can crack a joke and say, "You know what? I can relate to that. I remember that character. I know that person. I remember that TV show." All that apprehension just melts away and they're comfortable now. "And now what do you want from me?" They're ready to give whatever they can.

And I know, Donald, you talked about this, I want everybody to share a little bit, in how during COVID, it forced us to realize more of what's going on in reality when it comes to the health field. So I just want to pivot a little bit and talk about over the past 2, 3, 4 years, what are some lessons that we have learned, that HBCUs have learned that have brought to the forefront of probably things that honestly, HBCUs already knew, but I think the world started to realize and with regards to the care that we received among minority patients? And so just let's talk about that a little bit.

Brian Rivers:

Yeah. So I'll kick us off and that's great. For us, we learned that in the time of chaos, that's the wrong time to go out and try and do health education. People want answers, people want solutions and people want interventions. I think what COVID made extremely clear to us all is that we must begin to normalize the research process in a way that all individuals understand the value of science and the value of research. In the time of chaos, it's not the time to teach individuals about research and about science. Which we found ourselves doing because there was a lot of vaccine hesitancy around uptake of the vaccine. And then again, it goes back to this whole notion and this construct of trust. Trust for researchers, trust for research, trust for the healthcare system and trust for healthcare providers. So we must begin to normalize genetic literacy in STEM classes, we must begin to normalize research literacy at a very young age.

And I just got a quick plug to the American Cancer Society, they get it, similar to NCI Center to Reduce Cancer Health Disparities. I mean us and the other three black medical schools recently received a very novel inaugural award from the American Cancer Society, entitled Diversity in Cancer Research Institutional Development Grant led by Ellie Daniels. And what this award does is it allows us HBCUs to begin to strategically advance cancer prevention and control through a lens that we're comfortable with, whether it's community engagement or whether it's retooling and resourcing our providers that are in safety net hospitals or federally qualified health centers, both settings that are always resource constrained. We're able to fund post-doctoral fellows through this award. We're able to fund clinician scientists. We're able to fund pilot grants to early stage investigators.

We're able to fund master thesis now, those pursuing masters in clinical research and public health. We're able to fund individuals in our PA program, also in our biomedical enterprise. These are resources that we didn't have before, that really constrained what we were able to do in the community. So think about it, we have these fabulous relationships with the community, but because of this whole notion of resource allocation, we cannot do everything that we need to do. And so we're extremely excited to have received this award. We've also been very fortunate enough through our patchy grant partnerships with Advance Cancer Health Equity to establish a pipeline. So now we have growth sales, is what we call it, that targets high school students with cancer education, cancer research, small research project in the month of June over a four-week period. And then they're paired with, of course, a team of seasoned mentors.

We have our CRISP program, which targets undergraduate students. So we have a pipeline program with Spelman College and Morehouse College and Clark Atlanta and now Albany State University as well as Georgia College and State University. And then again, funding from our federal government that helped us raise the tide. Lastly, our SCREP program, our Summer Cancer Research Education Program targeting graduate students and first year medical students. So having that continuity, helping normalize science literacy and research literacy where it is a topic at the table at dinner, where it is a topic with the fellows when you're in the gym. It's something not germane just to scientists or just those folks in the white coat, but we can talk about it in an intelligent way in the barbershop or in a small group at church or after three hours in a beauty salon. We really can change the conversation and normalizing science is fun, let's bring it back. Science and research is outstanding and it is a key pillar of our society.

Rea Blakey :

You make strong points, Brian, and that's why I love you as a panelist because you always deliver. I would be remiss if I didn't mention on Sonequa's behalf and that folks that stand up to cancer, that they actually have a health equity initiative that focuses and addresses disparities in cancer research and screening and treatment. One of the things that everybody on this panel and throughout the audience needs to know is that they have a community engagement grant program and they're now accepting applications to support and compliment work of teams in four different cities. That would be Dallas, Los Angeles, Philadelphia and Chicago. It has to do with early phase clinical cancer trials. But there's money out there to be had from private organizations as well. These grants are for two years and they range between I think $50,000 and $100,000 to the organizations teams that are the winners of the grant opportunity. But there's resources, we just need to let everybody know about the resources and then as you say, "Normalize the conversation." Sonequa.

Sonequa Martin-Green:

Thank you. I was just thinking about working in tandem with, we've been talking about even doctors actually seeing their patients and actually talking to them like human beings because something that we all know happens and that I've experienced and seen for myself is doctors who could care less about their black patients in the south especially and in my hometown even. And so that patient advocacy is so important. I believe it was you, Steven, that was saying it earlier, that somebody needs to come with and be there with patients as they're getting this information because they're getting a lot. It might have been you, Brian. But they're getting a lot of information, they're getting a lot of science and a lot of medical speak from their provider. But they don't know what it means, they don't know what it means for them, what it means for their future, they don't really understand it.

And if they don't have a family member that can go with them or explain it to them after the fact, I've seen the pain that that causes. And of course I've been that advocate for my parents as well, my sister especially. And I'm sure there is something like this that I just am not privy to yet, but I wish that there was some sort of way of engaging with people as an addendum to their doctor visit. A hotline they can call or something that is very simple, quick access for them to actually speak to someone who can break it down for them if they don't have an advocate in their family or a friend or something like that. But if they can call someone who knows, someone who's in the medical field, but who is like them, maybe this is a dream, but I feel like something like that is just another layer that could be added, another ingredient in the stew it of that advocacy and that community engagement and also building that trust.

Brian Rivers:

Sonequa, you make some good points there. And that's one of the, I think, strong points that a lot of the medical schools share in their approach toward community engagement. It's the use of community health workers or even patient navigators, the model the Harold Freeman developed about 10 years ago. And it really addresses this whole need of social support, but even more so a lot of the times these individuals are from these impacted communities that serve as a liaison between the healthcare system and helping the individual digest just that onslaught of information that they receive within that visit. And a lot of individuals, when they don't understand the information, that we found in our research, it is almost paralyzing where they do nothing. And so to your point, we really need to foster again, what are key intervention strategies? We know disparities exist, we know that it's horrible for some groups versus others, but I like this discussion around these intervention strategies and what are some best practices that we can scale up and sustain? So thanks a lot for that, Sonequa.

Stephen Noble:

Sonequa brings up a great point, and one of the things that I have seen in my own practice is that it takes a village to really deal with cancer care. And what I mean by that is when a patient comes into me and to talk about lung cancer, the way that our system is set up, that visit is supposed to be 30 minutes, maybe an hour. And so within 30 minutes, I'm supposed to explain cancer to this individual that's experienced this before. And so what it takes is it takes my office staff as well as the other patients in my office to understand that Dr. Noble's going to run a little bit late. Why? Because he's sitting up here trying to give the best care possible to that one particular individual. And then when you eventually get in to see me, I'm going to sit up here and spend that hour with you to painstakingly go through as much as we go through as far as drawing out pictures, making sure that the patient digests it.

But it takes a lot of time and as a system, we're confined by time constraints. We've got to get as many patients in as possible and so ultimately it feels as if each patient becomes a number, but this is actually an individual. So it takes patience on everybody's part. It takes us to reevaluate how we schedule patients, using other providers, for example, nurse practitioners, the nurse navigators, as well as other individuals to help with this information. I like the idea of, again, trying to break the information down for our patients and giving them some sort of contact in which they may have questions after hour, who can they go to? And so again, a lot of this is, it takes a village to really get someone through cancer care.

Dr. Luckson Mathieu:

Yeah, that's a good point. I just want to make the point real quick. So go ahead. Actually, Donald, I'm going to let you make this point and then I'll jump in.

Donald Alcendor :

So I want to say a little bit about cancer care. And so let's say you're walking into a physician's office, you've been diagnosed with cancer unfortunately, and then you're asked about what my treatment plan might be. I mean, we cannot go away from this stage and not talk about the disparities in cancer treatment today. You know what I'm saying? And the idea is that we know that certain people are offered certain types of therapies in terms of options, it may not be the best option. But again, if you're sitting there with no insurance or you've got the least bit of insurance, underinsured with, say, TennCare or something like that, you'd likely get an option that might not benefit you in the long run. You see? And then you're talking to a physician that spends seven minutes with you after giving you a cancer diagnosis. And so you're looking at it and saying, "What are my options here?"

He's telling you what you have and you don't understand that, he's telling you how to treat it and you don't understand that, and he's given you options that are unclear to you. And then now you have to go home being completely frightened and basically you've been traumatized during that visit. And the idea is that you have to go away with an understanding that if I don't do what he's saying to me, then I'm going to be in trouble. And again, you might say, 'Well, I don't trust what he's saying to me. I'm going to go somewhere else, a second opinion." And maybe that trip might be a trip to a place like Meharry or one of the other three HBCU medical schools. You see what I'm saying? And so what I'm saying is that when we think about cancer treatment and disparities, we're talking about people living in certain communities where the cancer screening infrastructure is so poor and so outdated that it's giving people basically radiation doses that may not be sufficient or even more than it should be.

Meaning that I sat on a panel and an expert from Johns Hopkins said that in some of these communities, they have outdated equipment that needs to be changed in order for people to get the right kind of diagnosis and cancer therapies. Are they getting the right amount of radiation or more than they need? And so I'm just saying that if you're standing in your circumstance, maybe with no insurance and having no information or not enough information and no medical advocate for you, I think that the patient, and usually this is a black and brown patient, is at an impasse. And again, we need to think about them.

Dr. Luckson Mathieu:

So this fits perfectly Donald with what I wanted to bring forth to the group again. And so let's chew on some of this idea of, in the age of precision medicine and personalized medicine care, often underserved population, as you talk about Donald, are forgotten, they're left behind. And so this precision medicine is not quite the case for a wide variety. It's not limited to just minorities, but to minority populations. So I just want to have the group talk about that and your experience. What are the critical, key, ideals, concepts? If we had this magic wand that I had, I could just wave it and then tomorrow morning it's real, that happened. How can we fix that? What do we have to be mindful of to not let underserved populations be left behind and not taking advantage of this age of precision medicine?

Because in my line of work, there's a lot of targeted therapy that's come out for lung cancer, but if I go back home and I talk to people in the community and the area, they're like, "What are you talking about?" "You had lung cancer and you could be tested for something else, there's a biomarker, it's not just automatically a chemotherapy." I sound foreign to them because this building behind my back, it doesn't trickle down to where I'm from in the inner city of South Florida. Not well enough. And so just let's talk about that a little bit, about precision medicine and the need for it to actually trickle down to populations that are underserved?

David Carlisle:

I'm going to make a comment that includes precision medicine, certainly Luckson. And it's, if I was a policymaker, if I was a federal or state funder, if I was a foundation, a philanthropic organization, I would be listening to this conversation and looking at who's speaking and saying, "Wow, this is really powerful." If I want to get a return on my investment, whether it's federal funds, donated funds, corporate funds, and move the ball on cancer disparities, I would invest in historically black medical schools and other colleges and universities because we're in the communities where the biggest effect change needs to occur and can occur. And guess what? We know how to do it. And we're walking the walk every day. So I would say, give us more resources because we can deliver on those resources, whether it's precision medicines specifically, oncology in general or healthcare disparities in general. This is where the action is and I would urge more focus on institutions like ours.

Brian Rivers:

Yeah. And I totally agree with David's comments, saying-

PART 3 OF 4 ENDS [01:09:04]

Brian Rivers:

Yeah, and I totally agree with David comments in that regard. It's amazing what you can do when you are properly resourced, realizing that you have the strong connection to the community, and they're really looking to you for the answers for some of these complex diseases that we're seeing running rampant in our communities. We're going to be launching in a couple of months an initiative entitled Clinical Trials Genomic Education Program, really to help drive what we're seeing as key drivers to precision medicine. We know that genetics, environment and one's lifestyle are all the key factors that are really driving precision medicine here in this country, and as well as around the world. And realizing the importance of one's genetics and understanding those genetic mutations that exist within as well as between groups is extremely important if we're going to see precision medicine actualized for all individuals in this country, but in particular those racial and ethnic groups that are disproportionately impacted by cancer. For most of the cancers, African Americans still have the highest cancer related mortality in comparison to other groups. And the question begs why?

So there's something not just within the individual genome, but it's also in their socio, more the environment, that we have to better understand as well. It's not a either/or, but it's an and. We saw that with COVID. Who was more adversely impacted by COVID in this country? And we saw it was Blacks or African Americans. And so again, that just [inaudible 01:10:32] something is in this environment that we're not getting right or we're not totally understanding as it relates to health outcomes. And so in addition to better diversifying individuals representation in these genomic studies and these genomic trials that would then power and drive genetic education and genetic counselors, which you're seeing more and more are now key aspects of the healthcare delivery system, the genetic counselors, we want to make sure that that reference guide, if you will, or the cancer genome atlas, if you will, is reflective of all individuals but not just a certain population that they're looking to generalize those findings and force fit on all individuals.

We have to better understand social determinants of health in the context of health outcomes, and again, what are some key intervention strategies that we can put forth. Now, here in Atlanta, Grady Hospital, I'll give them a shout-out real quick, they are a safety net hospital. They have actually downloaded the Z module in Epic, where within that Z module is a social determinant assessment or collector of information that they implement with every patient that walks in the door, every single time, multiple data points, really being able to contextualize the manifestation of the disease within an individual and understanding that this environment may be making you sick in collaboration with other exposures.

And then lastly, I'll say one of the key drivers, and I'm excited about, our AUC, the Atlanta University Center Data Science Center because we know that we're going to need data analysts. It's going to be a lot of big data that's going to help power clinical decision making, and we need to make sure that we have adequate representation of all individuals as data scientists or data analysts. And so, again, we have the key training programs and certificate programs targeting undergrads as well as graduates within the Atlanta University Center, which is comprised of Morehouse College, Spelman, Clark Atlanta, Morris Brown, and Morris School of Medicine, making sure that, again, there's representation at the table. And at the end of the day, if we're really going to see precision medicine actualized, we have to really hone in on representation across the board.

Donald Alcendor :

Yeah. I just want to say something and put the context of provision medicine on the table. The human genome was sequenced decades ago, and the genome they decided to sequence was not an African American. And so that created an opportunity for gene therapy. And so from gene therapy, we knew that we could find the mechanisms that were involved in dysregulation of genes that may turn on proteins or turn off proteins to cause cancers. And from there, we went on to just basically understanding biomarker research. And biomarker research allowed us to identify biomarkers expressed by certain cancer cells that would be more amenable to certain cancer drugs. And one in particular is breast cancer in African-American women. So triple-negative breast cancer has come to an understanding by way of precision medicine that there are certain drugs for that particular disease and other drugs are not suitable for that disease.

And so we have continued to learn how important it is, from a molecular level, the expression of certain cancer genes, certain drugs will work better after you understand the underlying mechanism of how the cancer works. And so precision medicine has been invaluable for us. And going forward in the future, I know we will find more important reasons to enhance precision medicine at HBCUs, and the idea we know clearly that certain medications will cause harm in African American people. And so we clearly know from precision medicine that all medications don't work the same for all people.

Rea Blakey :

Carla, I'm going to let you jump in here, but I just want to remind our panelists, we're kind of winding down on the last 15 minutes of our program. And we do want to give you all an opportunity to have one or two minutes of final thoughts or summarization, so sort of be clicking that up in your minds while we listen to Carla's comments.

Carla Williams:

Thank you, Rea. I just wanted to circle back to [inaudible 01:15:17] phrased the question about equity and precision medicine. And what came to mind is, again, from the patient's point of view, we always have to keep the person, the patient, at the center of what we're doing. And from that perspective, that person has one job, and that is to get well. And there's a lot of work that that patient has to do, and it actually brought a meme or a TikTok to mind where the person says, "I can't do my job, and your job, and his job, and her job." The patient's job is to get better. So equity in delivery of the care is our job.

And so I think what came to mind for me is what are our accountability metrics to make sure that we are delivering equitable care? And I think that's somewhere where HBCUs can lead. How are we leading around deciding and propagating those equity metrics? And then from the standpoint of a patient or a family caregiver, give me a report card on how you're doing. I don't need to know every single detail, but I can understand if you're an A, B, C, or D. And so I think there's some things that we can add to the mix that aren't there that will simplify this so that patients can focus on their job of getting better.

Stephen Noble:

One of the things that the group has touched on, both Donald and Brian as well as David, is that oftentimes we're starting to realize that our zip code is just as important or more important than our genetic code, and so really, targeting those zip codes in those disparate areas. And so echoing David's point about giving more money or more resources to HBCUs, especially because HBCUs produce the leaders in health. You have three organizations in particular from HBCU graduates, Health In Her Hue by Ashlee Wisdom, which is a digital health tech company that really looks at offering care specifically for Black women. You have Live Chair Health, which was started by Andrew Suggs, a graduate from Claflin University. His organization goes into barbershops, churches, hair salons and works with the hairstylist, the barber, the hair professional, as well as working with housing authorities, trying to encourage patients and give them a what's in it for me from the standpoint of taking a health journey with the organization, really trying to bring a lot of these collaborative groups together.

So these community based organizations that are started by HBCU graduates are key. And so it really echoes the sentiment that HBCUs are not only producing the doctors, the lawyers, the scientists, but also those entrepreneurs in digital health tech that really need the resources and the funding that all too often they don't get as much of in comparison to their white counterparts. Their white counterparts receive a lot of DC capital funding, but you don't see that same sort of DC capital funding behind Health In Her Hue, behind Live Chair Health and behind the organization We Got Us. And those are three organizations that are really out there in the organizations, in the streets doing the work in zip codes in which a lot of healthcare organizations dare not go.

Rea Blakey :

Stephen, was that part of your summary or should we circle back to you?

Stephen Noble:

You can circle back to me.

Rea Blakey :

Okay. All right. So we'll officially start the summaries now just as our dwindling moments. Karen, we haven't heard from you for a while. Why don't we start with you?

Karen Andrade:

I know. Well, I do think that it's so important to listen. And so I've been listening and taking notes and I'm really eager to go back and have conversations. I have so many questions from my Moonshot counterparts. But I did want to finish, or at least to wrap up, by saying that, trust me, I am surrounded by HBCU grads at the White House, yes, absolutely, and that HBCUs really, they're part of so many of our legislative actions because it is well known across the administration that minority serving institutions, HBCUs, HSIs. You are diversifying the STEM workforce, creating academic communities that help students thrive. And it's also well known that you've been doing this pioneering work without the support that is needed.

And so we are, as an administration, really aiming to change that. And not only that, we're moving beyond recognizing the leadership, but really taking action. And so one of those first examples that I hope that shows that we're moving into action is that the CHIPS and Science Act really authorized substantial investments to expand the geographic and institutional diversity of research institutions and the students and researchers that they serve, specifically supporting HBCUs and other MSIs by asking particularly the National Science Foundation in this case to address persistent funding disparities in federal grant funding opportunities because we know that these research disparities have often been positioned already wealthy, predominantly white institutions as the primary beneficiaries of the research funding and opportunities.

And really, one of the goals of this CHIPS and Science Act is to really start to inject money into HBCUs, but as the beginnings of that work, and also I wanted to share promising examples. For example, there's a program at NIH called Community Partners for Advancing Science for Society. At this point, as far as I know, it's not as strongly linked to the cancer community. But what it is linked to and what we are eager to support and understand over here at the White House is how does this, what is called COMPASS, Community Partnerships to Advance Science for Society, at NIH, it has been a response equally to understanding that there needs to be money that goes to address health inequities at the ground level, and that it starts from the communities.

And so this program, it really is focused on bringing the money directly, the funding directly, to community organizations, to community-based organizations. And so federal funds can actually move to communities that are on the ground. And so I share this as a showing of our intent and our goal to really move the needle in this direction, and just so much the gratitude for allowing me to listen, allowing me to participate and to be part of this conversation.

Rea Blakey :

Thank you so much for joining. We've probably got about, I don't know, eight minutes for the rest of you. So try to be cognizant of the fact that we're going to try and get comments from everyone. So Donald, you can go next.

Donald Alcendor :

Yeah. I just want to say that disparities are generational and cyclical. And the idea is we want to make a change. We have to be part of that change. And we have to make the communities that we live in a part of that change. What I'm concerned about is that will the political landscape change the policies and the gains that we're making with the Biden administration? And another thing is that I don't think children or young people should be left out of this conversation. They're the future and they should be treated as such. And I'd like to say this last thing, is that we are working at Meharry with other HBCUs to be part of a group that may include someday all HBCUs in the Going for Gold Cancer CEO Roundtable program. This is through the SAS Corporation out of Cary, North Carolina. And what they're trying to do is to bring all HBCUs one day under their umbrella and have cancer prevention, awareness, education, diagnosis, treatment, navigation, survivorship, all under one roof at the individual HBCUs. And so it's a large undertaking, but they are ready to do it.

Rea Blakey :

Thank you, Donald. We look forward to working with you on that and everybody else on the panel. David, would you like to go next?

David Carlisle:

Certainly. Thank you very much. And I would just say that we are really the solution to so many of the problems that plague health and healthcare in the United States because we are in the communities where the disparities are most manifest. So I would call out to everyone to focus on the benefits of working with HBCU organizations because we've delivered the goods for such a long time and we, again, know how to do it. And so we are an excellent source of information, resources, and especially, I think, benefits that extend beyond the communities that we serve. So I would say that we should be the recipients of additional investments going forward as we seek to target these disparities.

Rea Blakey :

We are the community. And Carla, I know for a fact, and Howard, you're one of our go-tos because you're close by. But when we launched National Black Family Cancer Awareness Week, it just made sense. We're all part of the same family. Your final thoughts?

Carla Williams:

Well, thank you Rea. And everyone is welcome to our campus. We'd love to host you all here for the next Black [inaudible 01:25:37] events. My comments would be going back to the top of the hour where I said I am truly a Star Trek fan girl, but I dabble in Star Wars. And so when we founded our American Cancer Society funded research program, we called it the Jedi Center, JEDI Cancer Center, which stands for justice, equity, diversity, and inclusion. And justice is the top of that sphere because how I define justice and health justice is that we are permanently correcting the conditions that have allowed the disparities and inequities and injustices to arise and persist. And so that means getting down to those deep structural issues that are going to have long-term change. And to the point that Karen made, the COMPASS Program is starting to get to that. So we're really excited about the next work that's coming forward.

Rea Blakey :

Thank you, ma'am. Can't wait. Sonequa, that was a perfect segue to you. Final thoughts?

Sonequa Martin-Green:

Thank you. That's my final thought, is thank you for letting me be here, and letting me listen, and letting me learn and be in your presence, each and every one of you. You taught me something. You taught me a lot of things, all of you, and my mind is racing. So I have lots of questions that I'm going to take to my people. This is very exciting and I appreciate what each and every one of you has done. And I want to celebrate you on this Black History Month, which should be every month. But nevertheless, you're heroes in the true sense of the word. So thank you for being that and for letting me be here with you.

Rea Blakey :

Thank you. Thank you for your celebrity, your artistry, and your commitment and passion to making sure that people have a greater awareness of the important issues of the day. We do appreciate you. Let's see now. Brian, Stephen, Luckson, we have three minutes. That means if we're really going to be equal and show compassion for others, that would be one minute a piece. So Brian, can you do it?

Brian Rivers:

I can do it, Rea. And I just wanted to say simply, thank you. Thank you, Rea, thank you, Luckson, thank you to the FDA, Oncologist Center of Excellence, Rich and others. Thank you for providing this conversation. Thank you for providing a platform to have this conversation during Black History Month. I think it's extremely important that we continue to keep this at the forefront. And I really appreciate all of the work that you guys are doing on this call, and I really hope that the funds continue to flow, hint, hint, from the White House and the Cancer Moonshot Initiative, to really provide the critical funding to our sponsors, whether it's NCI, [inaudible 01:28:30] or other agencies that really then allow us to do what we need to do to be successful. So again, thank you for all that you guys are doing. I'm hopeful as we move from models of health disparities to health equity and health justice. You guys have a great rest of the day.

Rea Blakey :

An extraordinarily equitable final comment. Thank you, Brian Rivers. Stephen, we're back to you.

Stephen Noble:

Well, thank you, Rea, thank you, Luckson, thank you to FDA, and great panel. It's a pleasure to be here. Just want to say, again, support HBCUs. We need to make health a priority. It's important for us all to know our family history and to invest in our youth. The youth are our future, as Donald said. And most importantly, we all need to vote. Voting is very important. Healthcare is not a right in America, it's a privilege. And therefore, voting is very important for things such as Medicaid expansion. And we see significant disparities in which Medicaid was not expanded in those states. So voting is very important and it's impactful to our health. So thank you.

Rea Blakey :

Thank you for all the great work that you do in the community and across the globe, because I know you have tentacles that reach into all kinds of communities. So thank you. Luckson, you have the last word on behalf of the Oncology Center of Excellence, sir.

Dr. Luckson Mathieu:

Sure. Thank you, Rea. I just want to thank everyone for the time that they gave us this afternoon. I started off by saying I feel very grateful. I really do mean that. Very privileged to share this virtual room with you each. Those in the medical field will know the Hippocratic Oath. It says, first do no harm. I think what we see here today through the conversation with the HBCUs is that they go further than just first do no harm. They serve others. And I think the teaching point that I got from here is that they can't do this alone. And so as much as we can from here, the FDA OCE, we will continue to try to create this environment. I hope this is not our last conversation, just the first. And I hope that those who are listening can join the efforts of the HBCUs and make this happen, that we can move forward and there is a future, a very bright future, when it comes to HBCUs and cancer care. So thank you again, everyone.

Rea Blakey :

Thanks all. I just want to remind everybody that coming up, the Thursday that is before Juneteenth, starts the National Black Family Cancer Awareness Week Social Media Campaign. Make sure to use the hashtag [inaudible 01:30:57]. Tell everybody. We have a webpage that has all kinds of information on it about how you can participate and get involved, do things that make a difference for the people that you love and in your community, because it takes a village, as we all well know. Want to thank you all for joining us on this Black History Month version of Conversations on Cancer. And to all of our HBCU fans, thank you. We appreciate you so much. Have a great day everybody.

Sonequa Martin-Green:

Thank you, Rea. Thank you, everybody.

Rea Blakey :

Bye-bye, all.

PART 4 OF 4 ENDS [01:31:33]