Episode 9: Black and African-Descent Collaborative For Prostate Cancer Action (BACPAC)

BACPAC is addressing the alarming prostate cancer disparities affecting Black men through innovative patient-centered research that transforms how cancer care is delivered. Black men are 2-2.4 times more likely to die from prostate cancer and 60-70% more likely to be diagnosed with aggressive forms, making this community-driven approach essential for creating effective solutions.

• BACPAC stands for Black and African Descent Collaborative for Prostate Cancer Action.
• The organization brings together researchers, patient advisors, and community members.
• Black men often face barriers when requesting PSA screening despite higher risk factors.
• Current research projects include STAR (post-surgery care), GEMS (aggressive cancer factors), and resource toolkit development.
• Virtual research community connects over 2,500 people, including 1,500+ prostate cancer survivors.
• Patient advisors provide critical insights that shape research questions and methodologies.
• Research focuses on solutions rather than just documenting existing disparities.
• Cultural context matters - many Black men prefer PSA blood tests over digital rectal exams.
• The organization aims to become independent to influence prostate cancer research nationally.
• The annual symposium on October 4th will share research findings and build community connections.

Join us at bacpacnetwork.org to connect with our virtual research community, participate in surveys, or become a patient advisor. Support our upcoming walk/run/bike event by searching for "BACPAC" team at obliteride.org.

#BACPAC

#ProstateCancer

Bad Science: Changes in politics and ideology do not change our need to be vigilant.

Chapters

• 0:00 Prostate Cancer Disparities for Black Men
• 0:59 Introduction to Backpack Organization
• 5:10 Origins and Naming of Backpack
• 8:45 Purpose and Mission of Backpack
• 18:51 Patient-Centered Research Approach
• 25:53 Overview of Current Research Projects
• 41:52 Virtual Research Community and Engagement
• 48:57 Upcoming Events and How to Get Involved
• 1:08:37 Closing Thoughts and Contact Information

Transcript

Dante: 0:00

So we already know about, for example, the incidence and the mortality rates. So you can find this information on ACS, the American Cancer Society, or the NCI, national Cancer Institute. About the mortality rates they're anywhere from 2 to 2.4 times higher compared to men of other racial and ethnic backgrounds men of other racial and ethnic backgrounds. Also, you're looking at about 60 to 70% incidence rate, which means they're 60 to 70% more likely to be diagnosed with aggressive forms of prostate cancer. So we're talking about Black or African-American men or African descent men that also get prostate cancer more and die from it more.

Grantley: 0:59

This is the Real Health Black Men podcast, where we empower men to take control of their health. We provide vital information and build community support. Join us as we discuss everything from major health challenges to mental wellness to physical fitness. So if you're ready to level up your health and your life, you're in the right place. Let's get started. Welcome back to Real Health Black Men. Thank you for listening. Thank you for your support.

Grantley: 1:30

Today we're discussing a topic which is very dear to my heart. It's an organization called BACPAC, and I have some friends with me who are going to help us understand who BACPAC is, what we do, why we exist and how you can get involved. So today, my guests are Dante Moorhead, Ben Young and Dr. Yaw Nyame. You've heard from Dr. Nyame on our previous episode about your men's urologic health and you may hear some more from him today, but today we're going to focus mostly on Dante and Ben telling us the story about BACPAC. So, gentlemen, welcome. Yeah, thanks for having us. Let's begin by saying what BACPAC is and then having you to introduce yourself. So who wants to tell us what BACPAC means? Go?

Ben : 2:24

ahead, ben, go ahead. Ben wants to tell us what BACPAC means. Go ahead, ben, go ahead. I was hoping that it was daunting. BACPAC is a an organization. Um, that started, um it were. There were a lot of starts. I would say that there were a lot of starts, as far as I know of. I was doing some social justice work up in Snohomish County, washington, and someone or somehow I got connected to, Dante Moorhead, who was at the time working for Fred Hutch doing some field work on our outreach work. Long story short, I didn't get any funding direct funding from him, but he invited me to something else and on how to write a grant. Um, I didn't really know exactly what I was getting into, but I went nonetheless and, um, I was partnered with, uh uh, Dr. John Gore as my. I can't remember what the term was that they called it, but he was my.

Dante: 3:52

I think they paired us with like grant mentees or writing mentees or, at the time, and it was interesting conversation because it was on prostate cancer.

Ben : 4:04

It was interesting, interesting conversation because it was on prostate cancer and I don't believe at that time that I had explained to anyone that I had just gone through prostate cancer myself, a prostatectomy myself, a partial prostatectomy, prostate to me, and, uh, so it was. It was new, fresh, but it was something that I was definitely interested in because I know that I couldn't be the only one, um and and that had that. It was such a mystery too, because all I was seeing was the medical side of it, because all I was seeing was the medical side of it.

Grantley: 4:50

And as it related directly to me as opposed to relating to the community, so you guys came up with the name BACPAC Black and African Descent Collaborative for Prostate Cancer Action. How'd you arrive at that name? Well, go ahead.

Dante: 5:10

It's a group discussion. Yeah, it was, it was a group discussion, um, so for those, okay, so how it came about, from how I remember it you can correct me if I'm wrong here but for those who know yao, he has, he's big on acronyms like whenever he's doing a project he'll come up with these like marketing names and acronyms for something, and then it'll be like star or this and that third, and so we're having a group discussion about names and we came up with a different couple and then he, he uttered this phrase like the black and African descent, for he's thinking that out in his head. And so, um, and him and his cool acronym names. And then, as he's doing that, um, I remember jenny was like like BACPAC, shout out to jenny lee. And she was like like BACPAC. And then I just remember I was like, yeah, how about BACPAC, like like a backpack? And at, just remember, I was like yeah, how about BACPAC, like like a backpack? And at that point I was like yeah, yeah, because we can have brothers walking around with BACPAC and it's a good look, you know, and I still have my BACPAC. We got that swag, but that's how the name came around, because he was thinking of yet another acronym and these long phrases and then we kind of stretched it or shortened it excuse me to BACPAC and so that's where it came from the Black and African Dissent Collaborative for Prostate Cancer Action Network and then kind of put it together, and so that's how I remember it and my memory is pretty accurate.

Dr. Nyame: 6:58

So I think that's how it came out and my memory is pretty accurate. So I think that's that's how you know. I went to, um, I got a degree at a school that really was known for branding. One of the things you realize was you know, uh, brands are are useful in so many ways. Right, they help with communication. Um, one of the things I love about a good brand is, uh, it brings the team together. You's like, yeah, if you don't have a team name, like what do you call yourselves? Right, are you really a team? Yeah, that's true. Even when you're a kid, right, when you're young, uh, you know, you might, you might go shirts, no shirts.

Dr. Nyame: 7:38

I remember back in the day that all of a sudden, people were like, all right, we're, we're the, we're the bulls, or whatever you know, cause you, you wanted that identity. And then you think about how strong a brand, like even the bulls brand at that time in the nineties, was, everyone wanted to identify with it. So, yeah, I don't, I mean I, who knows who, I who came up with the name BACPAC. We give Jenny credit, cause she, I really do think she, she, she is the one who put it all together.

Dr. Nyame: 8:04

I think that we actually we worked towards the name back in a backwards fashion too, in that we decided that we wanted to use BACPAC as the acronym and then we were able to work towards, um, you know, uh, a name that would fit that acronym, and and Dante was responsible for that Dante really wanted us to have BACPAC. He was like, yeah, we're going to wear them around. So then that became kind of a thing, which is, as you know, grant Lee. Now every event we have, we've got some extra BACPAC that we're giving to new members and people who show up to hold all their stuff together. And I think, symbolically Dante said this right it's like where you hold all of your valuables, your knowledge. And so we felt like, you know, symbolically, the BACPAC organization was going to hold all the things that were important to us with regards to addressing the needs of black men who had prostate cancer. So what is the purpose?

Grantley: 9:10

of BACPAC. What is the purpose of BACPAC that you came?

Dr. Nyame: 9:14

up with. I'm going to answer this and then I'm going to step back and let these two gentlemen talk. Um, you know, I think the purpose has changed. You know, I think the purpose has changed. Originally, BACPAC for me was an opportunity to bring black prostate cancer patients together to help us do better research as an institution here at the university, but we've grown a lot since 2020. We're a much different group and I think we serve different purposes now.

Dr. Nyame: 9:52

Um, but that the mission was simple when we started. You know, make black voices part of the prostate cancer research. You know, you know, uh, ecosystem, if you will. Um, it just was a missing voice and we would be talking about disparities in prostate cancer and there wouldn't be a single black patient around to to even share a little bit about their journey and experience, and so it made a lot of sense to me to create space to hand power to community.

Dr. Nyame: 10:28

But more you know, and handing power to community is really important, but I think handing power and giving space to patients right is one thing to be black in America, but it's another thing to be black and have an illness or a chronic disease that you're managing that that mean that's a very unique experience, um, and I felt that BACPAC was going to allow us to have let people get into that room, arm them with the information to have their opinions, matt, you know, be heard, uh, and and influence, you know, um, the way that we did research, because research is how we make things better, uh, in my opinion. So, anyways, that's, that's BACPAC to me. I'm really curious to hear what BACPAC means to Ben and Dante, cause I think they they've been there from the beginning and they've seen this thing change in a pretty significant way.

Grantley: 12:42

Thank you for that, dr Naomi. So, before we move into what BACPAC means to Ben and Dante, why don't we have you guys introduce yourselves? Tell us who you are, what you do and maybe your role in BACPAC as well. So who you are, what you do and maybe your role in BACPAC as well. So who you are, what you do and your role in BACPAC. Go ahead, ben.

Ben : 13:06

I am a community activist. At best it's all a lifetime. Yes, it's a lifetime. You know I've done other things for for pay.

Ben : 13:34

As some of you may know that community activism it's a lot of difficult work and sometimes, true community activists, they are bouncing their head against the wall. One of the things that stood out for me when this originally started was some of the statistics that Dr Niani said, and the biggest one, of course, was that half of the there are so many deaths here in America with prostate cancer and over half of them are Black cancer and over half of them are black, but there's only 3% of research and science that were associated using black people or black men. And that got me to really going to say that we have got to do our part. We can't be dependent upon someone else doing something, and it is that community activism that got me riled up and tried to get other folks in the community motivated to want to rally behind this and do something, and that first something, of course, as it continues to be, is early detection. How do we get more people from the community involved in the early detection? And it's interesting.

Ben : 15:15

I thought that I knew the answers to that and then I realized that you know, sometimes, every now and then, I'm not the smartest person in the world Every now and then. And so I listened and I heard and very enlightened and that's where I'm at with BACPAC, how it's kind of evolved into what it is now- Thank you.

Dante: 15:48

Yeah, let's see who I am and what I do. Those are like two different things PhD student University of Washington, community health educator, cancer health equity researcher and a graduate research assistant with BACPAC at the University of Washington. I know we had this conversation earlier. I've been here about, well, I've been with them for about four years or so. At this point I'm living here in Seattle, originally from North Carolina, from Chicago, from where I'm from, we like to say NC by way of Chicago and I think that Ben gets it. So that's kind of my dad and I think my, my.

Dante: 16:38

I know that my identity as a black or african-american male is important to me and it's um, interacts with my future work and my research and so the work we do at BACPAC it kind of speaks on that. Um, I look to like blend um research with social justice and activism and community organization and and advocacy, and so, um, that's that's a little bit of me. Um, former semi-pro athlete, I can claim that uh in soccer, uh, and um, yeah, that's that's pretty much me in a nutshell yeah.

Grantley: 17:22

Are you excited for 2026 in Seattle?

Dante: 17:24

oh, yeah, yeah, yeah it's funny you say that. Yeah, hopefully, I think it's gonna be way more traffic than we need, but I'm super excited. I know my partner, my wife. She's just like she was rolling her eyes. She's like we're not going to all these games. I'm like, all right, I guess what you say.

Grantley: 17:46

All right.

Dr. Nyame: 17:46

Yeah.

Grantley: 17:48

I tell people. You know when I came, I tell people all the time I said you think you know what being fanatical about sports is through football and basketball, but you have not seen what fanatical about sports is until you see soccer people show up. Oh yeah, for a World Cup game, oh yeah, I've seen. It's a different level of fanaticism.

Dante: 18:12

Different level. I've seen Barcelona play in Barcelona twice and, like I, was there when Messi scored his 400th goal, career goal, wow, yeah. So anyway, we got off topic. But yeah, that's it, we got off topic.

Dr. Nyame: 18:27

Yeah, we got off topic, we sure.

Dante: 18:29

But yeah, that's me, that's who I am and that's kind of what I do. I'm glad to be kind of nested in, coming from an organization that did that and then being nested in this organization under the mentorship of some great people who are kind of helping me along the way.

Grantley: 18:49

So you said you research in health disparities and one of the things that is in the purpose of BACPAC on the website is you know we said that through research we seek to find out why prostate cancer disparities exist and use that knowledge to improve the health of men in our community. So just give us a little taste about what are some of the disparities that you are aware of or that you are researching as a PhD student that might be pertinent to this conversation.

Dante: 19:21

Yeah, so, oh, there's tons. So we already know about, for example, the incidents and the mortality rates. So you can find information on ACS, the American Cancer Society, or the NCI, National Cancer Institute, about the mortality rates. They're anywhere from 2 to 2.4 times higher compared to men of other racial and ethnic backgrounds. Also, you're looking at about 60 to 70% incidence rate, which means they're 60 to 70% more likely to be diagnosed with aggressive forms of prostate cancer. So we're talking about black or African-American men or African descent men that also get prostate cancer more and die from it more, and those are the two important ones. And then we talk about early detection, for example. So the screening that's available to get screened Prostate cancer is very treatable, so it's important that men get screened.

Dante: 20:21

So a lot of my research or work likes to focus on prevention and early detection, and so I try to. I like one of the things I do like to talk to men about this, about what works for them, what will get them into getting screened, and some, there's some disparities there. What will get them into getting screened, and some, there's some disparities there. And, um, if you just listen to their narratives and their experiences, you can learn a lot. So, um, I do do a lot of qualitative work because I like to talk, I like to interview um men. I think their experiences and stories are very important, and so you know, for example, I learned that the DRE, or the digital rectal exam, is not very popular among black men from a cultural, contextual standpoint. So if we want them to get screened, instead of hustling that DRE and they refer to it as Dr Dre, that's what they call it they don't want that. So one way to help them to get screened is to kind of push them towards other methods of screening that are simpler and more effective.

Dante: 21:27

And then also, we also know that there are some differences in surveillance and follow-up care post-treatment, for example, from biopsies or surgery or for radiation, that follow-up care looks different. So a lot of the things that I'm reading about and studying about Yaw and BACPAC and the team are, you know, researching those things and they're also getting these types of experiences and stories. You know from men, from partnerships, from communities of men and things like that, and so, when we look at early detection and screening, you know from men, from partnerships, from communities of men and things like that, and so when we look at early detection and screening. We look at, you know, getting your PSA test. We look at your follow-up care after you've been diagnosed, after you've had surgery or radiation treatment, or even, for example, are providers giving you all the options or are they just like any surgery? Or are they saying, oh, we're going to actively do active surveillance for you, or do you need this, what?

Dante: 22:26

They're not getting all their options, they're not getting all the treatment options, they're not getting all the information and there's not enough information that's readily available in the context of the black African-American men when it comes to this, especially for aggressive forms compared to that of, you know, their white male counterparts.

Dante: 22:46

So these are some of the things that you know I've come across and there's tons of literature out there.

Dante: 22:50

Yeah, put me on a paper like a couple years ago by Emily Recon I can't forgive me if I butchered the name where we learned that from these major trials that kind of looked at PSA testing, and then I also learned that as part of that, since like 1996 or maybe or 1990, I can't remember but most of these trials that they collected data on and how well PSA testing works, these samples were predominantly white men. So we don't necessarily have enough information on the population that's affected most by this disease burden compared to white men. You see what I'm saying. So all these things are relevant and they point to like glaring disparities that exist for this particular disease. And so, yeah, I kind of and that's also important to my own identity as a Black man, as a Black male researcher. So not only does like the work at BACPAC check all the boxes for that, but I also consider it a very worthy cause because this is a heavy disease burden for this certain population.

Grantley: 23:57

Thank you, you know it's an opportune time for us to be talking about this because, you know, just recently our former president was diagnosed with aggressive prostate cancer and even though he is white in that population, this is an opportunity for us to reinforce the messages that you just brought up about the importance for black men to get tested and early screening, because we know that the disparities are there.

Dr. Nyame: 24:25

Yeah, I want to say something about that just from the clinical standpoint. You know, uh, we have a really effective test for detecting cancers early in PSA and blood tests. You can add that on to any checkup you know doctor's visit, where you're getting your cholesterol. You know your sugar and other things checked. You know, while your kidneys are working. We really scrutinize this test and we've almost in some ways demonized it and there are some populations that are very vulnerable as a result.

Dr. Nyame: 25:02

So older patients, regardless of how fit they are, are more likely to be told they shouldn't get tested. And in the early work we did with Dante and Ben, we learned from black men. We interviewed that many times when they approached their doctors to say I want to get a PSA test to get screened, they were being told oh don't, no, don't worry about it. This, this cancer, is not that serious and uh, um, for a cancer that's disproportionately killing black men, right, and so, um, I think the president's example is is a powerful one, because here is the most powerful person in the country with access to everything and who knows? I don't want to speculate, but who knows? But his age likely plays a factor into whether or not.

Dr. Nyame: 25:56

He gets this routine, what could be a routine test. I don't like to use examples of one to make strong arguments. That's not the right way to go about it. I mean, I think if we learn anything from what black men are experiencing, from what we see in the president, from what black men are experiencing from what we see in the president, we definitely need to critically reevaluate how we use this test, how we make it available to people that should have it and need it. And, to be honest, that's been a big part of what BACPAC has been doing over the last year and a half is re-envisioning how to test better and also how to get testing into the hands of people in a way that won't harm them but will allow them to maximize that benefit that you get from catching a cancer early.

Grantley: 26:50

You know you said you don't like to do it once. So it's more than one, because the same thing happened to me when I first talked to my GP about getting my PSA tested. He tried to talk me out of it. In fact, he talked me out of it for a year and asked me to look into some of the research. But I knew my family's history and so I went back and I said I want to have this test done and I want to start monitoring it back. And I said I want to have this test done and I want to start monitoring it. So one of the things that we do on this podcast is we encourage men to take control of your health. You know you're paying the bill. It's your insurance, it's your health. You're the one who's going to suffer with it, and sometimes you have to be a little bit more persuasive with your doctor to say yeah.

Grantley: 27:35

I understand that you may not think it was important right now, but I'd still like to do it. So then, once we started tracking it, we saw my length. Every time I had a PSA test the number went up. From that very first time, all right, and then it started to go up faster. So the curve it was just creeping. And then the last three tests it just shut up. But if we weren't tracking it I wouldn't have known that and we wouldn't. It was changing.

Dante: 28:04

I had that done to me. Yeah, speaking to what you both talking on, I requested, when I asked for a PSA test about three years or so ago. I was kind of deterred from it as well. I know the information, though, and what their assessment is kind of based on, but it's still an important test. Like we need a tool to at least talk about prevention and to get screened.

Dante: 28:29

And so my hematologist, oncologist, was telling me well, you know, you're fairly young. First of all, I was 40. And then he was saying well, this test, you know, it's not really accurate and stuff like that. It just seemed like the whole conversation was kind of deterring me from getting it, and so I kind of had to press for it. I was like, listen, you're already drawing, doing a blood draw. Just add it on. I would like it, you know.

Dante: 28:55

So it's kind of taking charge of your own health and knowing the information. And given that I knew the information and I wanted to tell him man, do you know where I work? Like, give me the test, I know what I'm talking about. Let me get the test. You don't know me. Like, give me the test, I know what I'm doing. I have other health circumstances but I thought it was important to have. So you're absolutely right when you know men should take you know, control their own health and know the information and you know it's a, it's a good test, especially for you know. It's important tests for black men to know and to get started early because most times they're not diagnosed until later ages and by then it could have advanced as far as the stages.

Ben : 29:40

So I thank you, I, I recognize a lot of the things that I went through, being that, now that I'm 70, there are, there are there are a lot of uh, health challenges that folks go through, of challenges that folks go through. And uh, of course, I was going through and I was actually being seen by a doctor or a GP, uh, on a regular, pretty regular basis, and it just you know. So I was, I actually am one of those that have. I may have dreaded it, but I had the annual DRE and it was just, I just looked at it as something that I had to have. The other thing, and it was at that point, it was actually a PA that did it and she said, I think you probably need a PSA test, man. I was 61. And, yeah, I was 61. And so I said, sure, sure, why not? I haven't had one in about two years? And she said, yeah, I haven't had one in about two years. I did it and sure, it came back. My number was very elevated and so I went to a urologist and things just flew from there and about four months later I made that decision. But it is one that, when you're talking about men and their health, it is. You can go into the doctor for one thing, but there are many other things that you could also ask that doctor to check and test, and that's something that, through BACPAC, we're able to get more people to be aware.

Ben : 31:56

Because I have been living in this area about two and a half years a little more than two and a half years now and still just getting to know my neighbors. And my neighbor stopped me. He was riding in the road and the next thing I know he was telling me about his prostate cancer treatment and what he was going through. And you know, both of us are retired and it's kind of amazing because we sat there and we talked. But I have six people that I talked to in this little circle that I'm in, and out of that, six five of us are 100% aware of prostate cancer and it's probably because of so many in this area that are now seeing it and seeing and it is important for us.

Ben : 32:53

Dante, my point here is this is that, Dante, when I was doing my study or a little survey that I was doing there in the community, dante said that perhaps we need to go to younger men and at first I thought why? And then, after he said it a couple of times and very demonstrably, I was appreciative of it. Though I was appreciative of it, though I was appreciative of it. It wasn't rude, it was just trying to make me understand that the earlier that we get folks tested, or at least knowing knowledgeable about it, the better off that we are. And that's what I'm seeing, is that, from based upon the surveys and studies that are coming out now, that this is important for us.

Ben : 34:00

It's important for us to take control of ourselves, and the only way of us taking control of ourselves is being knowledgeable about it. And our job at least my job is to go out and spread the word and make sure that people have that opportunity to at least seek the knowledge. At least seek the knowledge. Maybe not because I can't tell you I can't tell someone all about prostate cancer, because that's not me. What I can tell you is the experience that I went through, and I know that everybody's experience is going to be a little different, so proud of the fact that I'm a part of something that is disseminating information constantly, and new information and current information on what's going on in the world of the process.

Grantley: 34:53

Thank you. That is a great transition to the next part of our conversation is the work that BACPAC is doing and hopes to do. But before we get into that, I get into that. I've got one more question just for clarification and then we're going to get into the work. So, um, Dante, Fred Hutch Cancer Institute work for at , is that correct? I used to.

Dante: 35:19

That's where, yeah yeah, yeah, now you're at the university. Yeah, I'm at. I'm at the now and I'm with BACPAC and Yow at University of Washington, maryland.

Grantley: 35:28

Right. So you and Dr Nyame are at the University of Washington. So the question is is BACPAC a part of the Fred Hubbs Cancer Institute, Is it part of the University of Washington or is it a standalone organization that is just affiliated with those organizations because of where we're located, I don't know who wants to take that call oh man, I figured so.

Dr. Nyame: 35:56

Uh, we? The truth is we don't know. I mean, it's nobody really understands what BACPAC is right. If you ask some of the people in my department, they kind of talk about our research team as BACPAC. But you know and then you know.

Dr. Nyame: 36:11

Obviously we who are involved in BACPAC know that it is a separate group of men. I think the vision and the dream is that it's standalone, that we have a group of a powerful group of patients that can go to any researcher in the country and say, hey, you're not doing it right or we can help you do it better. Right now our research team gets to take advantage of that, you know, every week. But I think that's the vision. So the answer to your question is I think it's separating. It started out as a UW entity and very intertwined, but I think we're starting to have an appropriate separation so that the group can influence, advise, support independently without having to feel like they have to be representative of the UW or Fred Hutchins' agenda. Right, there's some freedom there if it's not a university entity. So I think that's important.

Grantley: 37:23

So what made BACPAC different from other prostate cancer organizations? Is it the patient focus or is it the research focus? What would you?

Dr. Nyame: 37:35

say the most obvious is the focus on Black people. I mean, you know, there's a lot of organizations out there. Prostate cancer, cancer is common y'all. We talked about this in our last podcast but one in eight men, one in six black men, you're uh are going to be diagnosed in their lifetime, so it's very common and so, uh, there's a lot of great organizations prostate cancer foundation zero. There's even an advocacy awareness education group called FINN that is started by Tom Farrington. A Black prostate cancer survivor has done a lot of work.

Dr. Nyame: 38:17

But I think, you know, our focus on Black people was one differentiator. Then the second was a research. You know, I think we didn't want to come together with the purpose of educating or getting the word out as our only focus. We wanted to help do the research that would make doctors and healthcare providers practice differently, and I want to. I got to say this. I said I would keep my words brief. That's never true.

Dr. Nyame: 38:46

Um, this idea that we have to study what, what, the why, the disparities exist as a, as wasted energy, we we've known that's been reported on for a long time, right. So I think what we do, that's different is we're studying how to make those disparities go away. That's different, right. So you know we're doing all this work, we're having all these conversations, we're building towards studies that will prove that we can do better and that in doing that, you know, we're providing the ammunition, hopefully, for others to do the same. What do I mean by that?

Dr. Nyame: 39:28

We spent a good chunk of our Wednesday evening meeting talking about we don't need to test whether or not people need social support. To have more than 2% of the people be from a rural area or be Black, latino, you know, indigenous, then you got to provide the social support that's got to be built in for anybody who wants to participate. So you know, philosophically, you know we take this approach that we're not going to spend a lot of energy and time trying to describe the things that have been true, um, in health care in america for, you know, 50, 60, 100 years. Uh, we're really focused on how we overcome those things and the group provides so much rich information, novel thoughts on how we approach that that are, I really think, going to be game changers. In 10, 15 years You'll look back at the results of the studies this group is doing and say, wow, you know right, this was a turning point in how we approached cancer research in the US.

Grantley: 40:45

So we're going to get into the details now, based on these two questions what is the virtual research community, which is something that we talk about, which I think is unique to us, how does it work? And then the second part of it is what, specifically, is some of the work that BACPAC is doing? We talk about the research that is happening and that kind of stuff, but I want to get into some of those specifically. So let's should we start with the work that BACPAC is doing and then come back to the virtual research community, or is the virtual research community a good springboard into the work that we're doing?

Dante: 41:27

Dan to you, I guess we could talk about the work, I guess, and then the virtual research community, because that sort of advises a lot of the work.

Grantley: 41:39

Okay, okay, so give us an overview of some of the specific work that BACPAC is doing right now.

Dante: 41:47

Oh wow, that is a whole separate show.

Grantley: 41:51

Yeah, just give us the topic of.

Dante: 41:53

Maybe the focus yeah, yeah, I might want to give you that it's. His catalog is deep, ok, I can All right, please stop me and correct me and jump in by any means. So is there's multiple studies and projects going on, some that are current, some that are about to start. Um, currently there's there's the STAR, which is focusing on secondary treatment after radical prostatectomy, and black men. So, looking at follow-up care following your diagnosis and your your prostatectomy, I'm currently doing interviews with patients for that as well, and we're looking at patterns of like outcomes for secondary treatment and post-surveillance, like what are those differences in your post-treatment experiences and why do they matter? So that's that's one. Um, you know, jumping at any time, explain more if you need to, yeah then um, there's also the, the GEMS, again, with these acronyms um, germline, environmental, social, something structural GEMS, um, and that's looking at like determinants of aggressive and lethal prostate cancer and black men. And that's an important one because it's like building a cohort or a group of black men to study biological factors of aggressive prostate cancer and looking at any like genetic mutations and forming a biorepository or, like you know, collecting samples and tissue samples and things like that to look at these and to look at how it's affected. That's a really huge one, I think, and I'll let him speak more of that in a minute. And then there was EDAB, and I don't remember the acronym, but that's like multi-stakeholder engagement. That's also important, so organizing and creating equity around like prostate cancer outcomes, looking at early detection. So organizing these stakeholders and having actually Black men advise us on like solutions or to increase early detections, like how can we do screening tests, better strategies around PSA testing. It's very patient centered and it's very patient engaged, and so these men come together as advisors and they kind of identify any strategies and screening that are needed or early detection, and they kind of drive our research agenda.

Dante: 44:19

And then there's COMBAT PC again another acronym, but that one's about creating like a resource toolkit and it's developed in like partnership with black men who are trying to help create these resources along with providers. It gives you information on clinical trials. It gives you information on PSA testing, what tools could help raise awareness, or what tools or resources you can be armed with during a clinical encounter to help you with your shared or informed decision-making when you're talking about your health on the prostate care continuum. And then so, and there's the big one and I'll let him speak to that where we're trying to form like a cancer health equity hub or center. That's kind of going to organize all of this work, where BACPAC is going to be housed in this and developing different interventions and support and also hosting like cancer center activities.

Dante: 45:12

So there's going to be community benefit grants, there's going to be uh, you know, a organization helping push the work forward. It's even supporting, like train the trainers or citizen scientists are helping black men to empower their own care, like training them to do some of the work and the research, and even, hopefully, an activity where we support future people or students who want to do that work and kind of develop and train the next group of cancer, prostate cancer, health equity researchers, things like that. So that was like four or five. I'm missing a ton. I'm just trying to give a big overview. Feel free to jump in Yao, but those are the ones that come to mind that are current.

Dr. Nyame: 45:57

Yeah, that's a good summary. The way we look at it is you can't affect this big problem. You know, ben, you know, said at the beginning that black men are twice as likely to die from prostate cancer I think Dante also alluded to that 50% or so more likely to be diagnosed. So the burden is huge, right, and we calculated that burden. You know it's a lot of life lost due to prostate cancer. I think we talked about that in our last show. So when you have a complex problem like this, the engineer in me, from way back when when I was an engineering student, feels that you solve complex problems at multiple points. Right, you can't, you can't just go in the equation and, and you know, move one particular small piece of it and expect the output to be different. Right, you gotta approach it at all in in the ways that you can and all the different points where it needs assistance. So we did we. We looked at the problem from start to finish, from diagnosis, through treatment, through to to to death, and said how can we alter death? Right, and what we've learned in our conversations is that there are all these different points where we might let patients down. Right, we might not be screening enough. We certainly don't understand why black men are getting more cancer. We need to figure that one out. That's been true for a long time. Once people are at their decision point, we're not supporting them to get treated right, and maybe then they get overwhelmed and they either don't get the right treatment or they walk away from treatment when they should get it. And then once people are treated or they get supported right, that's a whole nother journey. So that's why Dante's here describing all these different projects. They're kind of supporting, they're holding up and addressing all those different points. And you, you know what we've done is we've done our preliminary work right. We kind of understand how we want to approach supporting those different arenas. That's what the last few years was was just getting a lay of the land or understanding the landscape.

Dr. Nyame: 48:20

And I think the next three, four years is all going to be about action, which is going to be fun, right. It's going to be going to trials and studies and seeing if the things that we think are going to be beneficial actually help right. And, to echo the words of Ben at a meeting from last year, we want our studies to help everybody right. To help everybody right. The goal is to make sure that if you get in a study that's a BACPAC study that you come out the other end bettering yourself, your health, in some way, um, rather than like really trying to say okay compared to doing nothing or compared to what you might have experienced in your community.

Dr. Nyame: 49:03

If you're lucky and the computer draws you to the BACPAC, you know deluxe package, you're going to do real well. And if you don't get the deluxe package, well, good luck. Like we're not, we're not really interested in that. So it's been fun and that's helping us reinvent the way we think about how we're going to measure benefit too, right, that's what I mean by. Maybe in 10 to 15 years we may have had a really positive impact on on the field because we may help people think about being more patient and community centered and what. What we think is a meaningful benefit Right Right now. Benefit is just like less people die, right, but that's not good enough.

Grantley: 49:45

So yeah, and the thing that I think about is, as we solve these issues, as we get to better understand, you know, why there's disparities in the Black community, why people are diagnosed more and more aggressive and more lethal. It also benefits the entire population as a whole, right, the entire scientific, entire medical community as a whole, because hopefully, what we are coming up with are also things that can be used in other areas of the prostate cancer world. So, ben, what's your role in any of these studies? Are you involved in any of these studies? How do you fit in?

Ben : 50:52

Has questions come up or creation of some of the questions that are being asked in some of the surveys, my experience and roles within the community and how folks talk to me. I once did I was was doing part of the survey and I was sitting around. There must have been 10 guys, I think, and 10 black men that were sitting around and 10 black men that were sitting around and you know the the I think I said it to you Before we got started how we're in this group. None of us had the code switch and because none of us had the code switch, we got got thoughts or answers or things that were said that we probably wouldn't say in any other type of group except for that. But because we were there and we were only focused on prostate cancer and and when you had real health, we were having real talk, and the real talk says that some of the things that we don't think about or we don't talk about in polite circles, and so that's what gets interjected into my patient-centered focus with BACPAC.

Grantley: 52:39

So one of the things that we talk about and I think Dante and Dr Naomi you mentioned it is the role of patient advisors, and it seems to me that that's also one of the unique things about BACPAC. Obviously, I'm not an authority on all the research going on in science, but it seemed to me like this topic of having patient advisors and patient input to the research is unique to BACPAC, or maybe semi-unique or maybe better, not popular in the industry. Is that true or is it? And also, what do you see the benefit for having patient advisors?

Dr. Nyame: 53:21

I mean, every good new idea you have is kind of an old idea, right. I think partnering with people to do better research has been around in various forms. Certainly partnering with community you will hear terms like community-based or community-partnered research that exists for community-level interventions, right, and so a good example of that was the pushes to do more colorectal screening. You know, getting people to be comfortable thinking about colonoscopy by training your barber to have that conversation, and people actually started to do that with prostate cancer screening too, right. So you're getting your cut and your barber your well-trained barber, she's talking about, you know, the NBA finals. And then they switch up and say, by the way, you know about colon cancer and that's been really effective, right, and that was one of those partnerships between researchers and community members. I do think that what we're doing is unique for the, the, the, the thing we're trying to address. We have collaborators and you know people that we work alongside here at the university that are doing this and other similar populations. So actually we are doing this roses project. Now BACPAC that's not my acronym, by the way, so I can't take credit for all of them. That's Dr Kemi Dulles, but she works with Black women around endometrial cancer, right. So similar concept.

Dr. Nyame: 54:55

But what's interesting to me is in medical research. But what's interesting to me is in medical research, even in medical care delivery, we don't do the thing that business people do, right, like and I say this all the time, ben and Dante have heard this a million times but you know, you don't open a business in a neighborhood of any type, you know, coffee stand, t-shirt store without understanding what the people want and need, right, you don't just get an investment to open your doors and then just start selling coffee certainly not going to open that store next to another coffee store. You know, you do your research and you understand where the need is and how to serve best. And we, that's not been required in medicine. You know, we uh, I hate the term we sit in the ivory tower and, um, and we, we, we pontificate. It's my favorite thing to have in the medicine why? Why do you think black men have, like, have you talked to any black men recently? Like you know, they may have some thoughts, and so that's been really great for us.

Dr. Nyame: 56:03

What I also love is a trickle-down effect Some of the things that we say in our room when some of our collaborators are there that do different type of work.

Dr. Nyame: 56:14

They hear it and then all of a sudden, two years later, I'm here as someone else, you know, talking in their lane, and they're using our you know, they're using our concepts, clearly, the way they think about the uh, the power in the room. I also love how different everybody is in the room, cause sometimes when people look at this problem they just say black man, boom, right, just like one category, right. And you guys know what I'm talking about. You know all the different personalities, all the different walks of life, that all has to be represented when you think about the problem. So yeah, you know, I don't want to take credit as, like Dante and me and Jenny and our research team, we're doing something revolutionary because it's it is old, you know this partnered approach been around since at least the 80s, like in a formalized academic context, right. But yeah, I think we're doing it different, right, which is I think that's what makes it a little bit more modern, especially applying it to big clinical trials, which is really our goal. That's going to be different.

Grantley: 57:37

Thank you.

Dante: 57:39

So, dante, uh, let's tell us a little bit about this virtual research community yeah, so it's basically a community that consists of, like, collaborators, researchers, patient advisors, and they're connected, you know, throughout the country and it's virtual and um. They each kind of advise or have input on various activities and studies you know for BACPAC, and so it's just a way of keeping everybody sort of you know connected and there's opportunities where they can provide direct input on, you know, some of the surveys or some of the cancer research that BACPAC is doing. They also can participate in webinars and educational content that's on our website and, yeah, they help us connect with other community-based organizations, other researchers, and so it's kind of like a big collaborative and that's pretty much what it is, yeah.

Grantley: 58:37

How many people are involved in it? So far, okay.

Dante: 58:39

So I'll let you answer this. But it's like I think it's over, like we got invites or we we sent out invites and then we got a huge response and then he was concerned that some of them were bots. And then he because it was like 2200, 2400 people, um, and he was like, oh man, those are bots, those are. And he was like I'm going to check. And then I believe that they checked and there weren't. So it's a pretty big, pretty big network. It's up there like between 1,500, 2,000 people who are involved and we keep in touch with them via. You know, web internet virtual means those type of things. You know, web internet virtual means those type of things. So it's a pretty big network that's associated with BACPAC that helps drive our work and our research agenda and just to stay connected.

Dr. Nyame: 59:27

Yeah, it's a big group 20, over 2,500 people, over 1,500 prostate cancer survivors. So it's a big group, Big group.

Dr. Nyame: 59:45

And you know I still worry that the people are not, that we have some bots and not everyone is real. It's an internet-based group, right, but I'll tell you, dante is interviewing people from this group. So, you know, what we wanted to do was have an audience of people that were willing to lend their voices on their experience, to kind of supplement what we have in our smaller group. You know the 20 men or so that you know 25 men that come to Seattle and work with us and jump on Zooms, and so we put out a request to do some interviews of people that were not part of our advisory team, that were in the virtual research community. And, according to Jenny, even though AI is really good, dante has talked to some real human beings from what we know. So it's really exciting that we've had an opportunity to expand BACPAC to include, you know, this virtual component.

Grantley: 1:00:42

Yeah, I think that's a really exciting part of what we do and I forgot to say this earlier. But just for full disclosure, I am one of the patient advisors on the GEMS study, just to put that out there. So I'm not just doing this interview as an interviewer, I'm doing this interview as a participant and also a patient survivor. So just to make that clear, just our guess.

Grantley: 1:01:09

Some of my thoughts may be biased by my experience and these guys are good guys to hang out with. We have a good time together whenever we get together Very good time Pretty fun. Yeah, we have a good time together whenever we get together Very good time, it's pretty fun. Yeah, I was surprised when I actually got the invitation from you to join the GEMS group. I was like, okay, but I've learned so much since I've joined that group. The sessions we have, the lectures and the training to be a patient researcher has been eye-opening and actually mind-blowing at times when I think about it. So what are some of the events that BACPAC supports and what events do we have coming up that maybe our listeners and our viewers could also get involved in?

Dr. Nyame: 1:01:59

Yeah, so our group, the gentlemen on this, uh, on this podcast today, plus about 25 more, maybe 30, get together once a year to just do the work. Right Cause, because of the way we we formed and where everybody's all over the country I guess we haven't said this, but we got um brothers coming in from what? Detroit, uh, north Carolina, now Dallas, uh, austin, texas, you know horns down, um, but uh, so we're, we're from all over and uh, and as a result, you know it's good to work in person at least once a year, right, and we're actually there's a call out for us to maybe even do it more than once a year, maybe twice. So that is a but that's a working meeting for BACPAC and that's kind of internal business. On October 4th we're going to have our symposium that's open to the public. October 4th we're going to have our symposium that's open to the public. Uh, we opened the cancer center doors.

Dr. Nyame: 1:03:03

Our, everyone from our team, uh, is out there and that event really is to do what has become something that is a request of the BACPAC advisors. Right, you guys say we got to get the word out. Pretty much every time we meet, we have to get the word out about prostate cancer, about screening and so we really want, and about the research we're doing, like what we're learning. So we want to use the symposium to do that. So we got a date. We're partnering this year with Zero, a big advocacy organization. We got a really incredible slate lined up. You're going to get to hear from everybody in the group in some capacity. So we're looking forward to building community and educating at that event.

Grantley: 1:03:52

And that's going to be at the Fred Hutchinson Cancer Institute.

Dr. Nyame: 1:03:55

Yeah, it'll be on the Fred Hutchinson Cancer Institute, but it's a hybrid event, so when we go live, maybe we can share the link and the QR code to be posted along with this episode. But you can sign up. For those that are not in Seattle or can't make it in person, there will be an option to hop on the Zoom and at least participate, as you can.

Grantley: 1:04:17

Is it limited to just the United States or people in other countries can register?

Dr. Nyame: 1:04:20

We had one person from a internet, one international participant, last year, so we we have capacity to have another timezone s might make it tricky. Uh, I know, every time I call family in Ghana they're like seven, seven hours ahead. So uh it might be some limitations there, um, but yeah, all are welcome.

Grantley: 1:04:42

Yeah, so we talk about the research, we talk about the patient advisors, we talk about the virtual research group, we talk about the symposium that's coming up in October. Is there any other way that people can get involved with BACPAC? I mean, we're not a membership organization, yeah, we're not a member you have to use, and stuff like that. How could people get involved with BACPAC? I mean, yeah, we're not a membership, yeah, we're not a member you have to use, and stuff like that. Well, how could people get involved.

Dr. Nyame: 1:05:05

so I think, uh, the two ways to get involved. Number one if you want to have your advice, um, your experiences, your knowledge, be part of the prostate cancer research apparatus. If you will ecosystem, I said earlier I need to come up with a simpler word, but you can sign up for the virtual research community. We send surveys, often paid surveys, where your voice can be heard and you can share your experience, and that goes to medical research. That informs what we do. Next, and certainly, as I said, we you know these interviews that Dante is doing are paid interviews or you get an opportunity to share your experience and we demonstrate how much we value your time in that endeavor by providing a small fee for that consultant fee, if you will. So the virtual research community is a great way to get involved.

Dr. Nyame: 1:06:03

Number two if you're a survivor and you want to be on one of these teams, email us. You know, when we started, every time we had a project I'd have to email Ben. Hey, ben, we got an idea for you. Poor Ben had to say felt like he had to say yes to all this work, and now we get to spread it around. I had to say felt like he had to say yes to all this work, and now we get to spread.

Dr. Nyame: 1:06:22

I had the email, Ben. Now we get to spread it around. Grantley So, , you said I'm surprised you asked, but you, you know, at the symposium you're like, if there's a project, I'm willing to participate, and there's always a project, so uh, there's, that. There's good way for people to become advisors. And then the third, and this is a plug and hopefully you can share the link you know the BACPAC Team. We're doing a walk, run, bike ride event here in Seattle as part of a Obliteriteride. That's going to call attention to our mission. It's going to help us raise some money and a great way to be in community, to be active and to demonstrate the power of being a cancer survivor or cancer researcher. I'm really looking forward to getting the group together for that event and to show out, as they say. I think we'll have some BACPAC swag for the team and we'll be loud and proud as we advocate for better prostate cancer care for black men. So be on the lookout for that too.

Grantley: 1:07:24

That's a great one, and the website is obliterideorg O-B-L-I-T-E-R-I-D-E, dot O-R-G, and our team is called BACPAC B-E-S-C, p-e-s-c, and you can donate to that. Three of us already signed up for that and, um, I already had my injury, so I don't want to do really well. My chain came off my bicycle the other day going up here. Oh, sorry to hear that. My foot landed on the derailleur. It's not good, but I'm doing good. I'm looking forward to that. That's going to be fun. So, as we wrap it up here, our time is coming to a close. As we wrap it up here, I really want to thank you, gentlemen, for being here, but is there any closing comments that you would want to share with our listeners or any words of encouragement? Let's start with you, ben, and then we go to Dante and then we have Dr. Nyame close it out.

Ben : 1:08:29

For me, it's always. I'm grateful to be a part of the community, part of the community. It is many days, for personal reasons or personal health reasons, that the folks in this community have given me that to move forward and not be so self-centered, so to speak. I'm still. I still have this overinflated ego and I wear hats to try and keep it in check. The reality is that it is a BACPAC at this point that, even from the virtual standpoint, that has given me greater hope for all of the things that I wanted to see happen in my lifetime. From the health community, I know that prostate cancer is just one thing, but it's one major thing, especially for African-American males, and I'm just glad to be a part of.

Dante: 1:10:03

Yeah, I'm echoing some of the sentiments as well. I'm also uh glad to be a be a part of it and uh thank. Also thank you to to you, grantley, for having us here today, and uh also thanks to to Yao and Ben. Um, ben was like my number one guy. I had a lot of partners, but I reached out to Ben for everything, and so I'm grateful for that and hopefully I would say hopefully we have a chance to connect with you know Black men out there and that they reach out and be a part of this, Because I really believe that your voice matters and your experience matters and you can really help us push the work forward.

Dante: 1:10:47

I think that this is a truly good organization. It's really good work and I'm proud and excited to be a part of it. I think it's a part of my own journey and I think it's part of my own journey and I think it's great. I have the opportunity to work with tons of patients, speak to a ton of men and learn a lot from them. So, for those who are watching, listening, hopefully you can be a part of that experience and we hope that we have the opportunity to connect with you and kind of address this issue, because prostate cancer among Black and African-American men is is is a heavy disease burden and um, we want to make sure we have the chance to address it. So that's all and thanks for having uh having us on today.

Dr. Nyame: 1:11:31

I mean I I echo what what Ben and um and Dante have said this um, this experience has been an incredible one. It's been a been a fun ride. Uh, one of the things that I love most about this is the community. We have real friendships, right, um, you know, the first time met ben, you put your hand out nice to meet you, sir. You know it's a little stiffer handshake. You're still feeling each other out. You're're grateful for the partnership, but it's not the same as when I see Ben now and I give him a big hug and you know it's just. There's a warmth there that really exists. There's a respect there that's really hard to put into words.

Dr. Nyame: 1:12:16

And so you know I want that community to grow. You know, selfishly, I want that. I want others to have that experience. You know other survivors who want to make a difference, to know that there is a space where we can help you change what you don't like about the way that that prostate cancer care is being given or approached. And so I think that's my final words. If you're sitting at home and you have a long list of the things that we're doing wrong in health care with regards to prostate cancer, there's a place for you to share that list and try to make things better share that list and try to make things better.

Grantley: 1:13:01

And our website is BACPAC B-A-C-P-A-C-network. org and you can see the virtual community there, some of the work that's being done. You can also sign up, as we said before, if you want your voice to be heard, if you want to communicate with us, you can see it through BACPACnetwork. org . Thank you, gentlemen, for your time, Thank you for here today. It was a great discussion and I appreciate you and thank you for giving us the hour hour, your time to share with our audience. Yeah, absolutely. Write us at real health black men at gmailcom realhealthblackmen at gmailcom To support this podcast. Go to buymeacoffee. com forward slash realhealthblackmen, buymeacoffee. com Real Health Black Men and to become a corporate sponsor, send us an email.