September 5, 2025 • 74 mins
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
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Dante (00:00):
So we already know about, for example, the incidence and
the mortality rates.
So you can find thisinformation on ACS, the American
Cancer Society, or the NCI,national Cancer Institute.
About the mortality ratesthey're anywhere from 2 to 2.4
times higher compared to men ofother racial and ethnic
(00:23):
backgrounds men of other racialand ethnic backgrounds.
Also, you're looking at about60 to 70% incidence rate, which
means they're 60 to 70% morelikely to be diagnosed with
aggressive forms of prostatecancer.
So we're talking about Black orAfrican-American men or African
descent men that also getprostate cancer more and die
(00:43):
from it more.
Grantley (00:59):
This is the Real Health Black Men podcast, where
we empower men to take controlof their health.
We provide vital informationand build community support.
Join us as we discusseverything from major health
challenges to mental wellness tophysical fitness.
So if you're ready to level upyour health and your life,
you're in the right place.
Let's get started.
Welcome back to Real HealthBlack Men.
(01:27):
Thank you for listening.
Thank you for your support.
Today we're discussing a topicwhich is very dear to my heart.
It's an organization calledBACPAC, and I have some friends
with me who are going to help usunderstand who BACPAC is, what
we do, why we exist and how youcan get involved.
So today, my guests are DanteMoorhead, Ben Young and Dr.
(01:52):
Yaw Nyame.
You've heard from Dr.
Nyame on our previous episodeabout your men's urologic health
and you may hear some more fromhim today, but today we're
going to focus mostly on Danteand Ben telling us the story
about BACPAC.
So, gentlemen, welcome.
Yeah, thanks for having us.
Let's begin by saying whatBACPAC is and then having you to
(02:18):
introduce yourself.
So who wants to tell us whatBACPAC means?
Go?
Ben (02:24):
ahead, ben, go ahead.
Ben wants to tell us whatBACPAC means.
Go ahead, ben, go ahead.
I was hoping that it wasdaunting.
BACPAC is a an organization.
Um, that started, um it were.
There were a lot of starts.
I would say that there were alot of starts, as far as I know
(02:46):
of.
I was doing some social justicework up in Snohomish County,
washington, and someone orsomehow I got connected to,
Dante Moorhead, who was at thetime working for Fred Hutch
doing some field work on ouroutreach work.
(03:09):
Long story short, I didn't getany funding direct funding from
him, but he invited me tosomething else and on how to
write a grant.
Um, I didn't really knowexactly what I was getting into,
(03:32):
but I went nonetheless and, um,I was partnered with, uh uh, Dr
.
John Gore as my.
I can't remember what the termwas that they called it, but he
was my.
Dante (03:52):
I think they paired us with like grant mentees or
writing mentees or, at the time,and it was interesting
conversation because it was onprostate cancer.
Ben (04:04):
It was interesting, interesting conversation because
it was on prostate cancer and Idon't believe at that time that
I had explained to anyone thatI had just gone through prostate
cancer myself, a prostatectomymyself, a partial prostatectomy,
prostate to me, and, uh, so itwas.
(04:31):
It was new, fresh, but it wassomething that I was definitely
interested in because I knowthat 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 allI was seeing was the medical
side of it.
Grantley (04:50):
And as it related directly to me as opposed to
relating to the community, soyou guys came up with the name
BACPAC Black and African DescentCollaborative for Prostate
Cancer Action.
How'd you arrive at that name?
Well, go ahead.
Dante (05:10):
It's a group discussion.
Yeah, it was, it was a groupdiscussion, um, so for those,
okay, so how it came about, fromhow I remember it you can
correct me if I'm wrong here butfor those who know yao, he has,
he's big on acronyms likewhenever he's doing a project
he'll come up with these likemarketing names and acronyms for
something, and then it'll belike star or this and that third
(05:32):
, and so we're having a groupdiscussion about names and we
came up with a different coupleand then he, he uttered this
phrase like the black andAfrican descent, for he's
thinking that out in his head.
And so, um, and him and hiscool acronym names.
And then, as he's doing that,um, I remember jenny was like
(05:56):
like BACPAC, shout out to jennylee.
And she was like like BACPAC.
And then I just remember I waslike, yeah, how about BACPAC,
like like a backpack?
And at, just remember, I waslike yeah, how about BACPAC,
like like a backpack?
And at that point I was likeyeah, yeah, because we can have
brothers walking around withBACPAC and it's a good look, you
know, and I still have myBACPAC.
We got that swag, but that'show the name came around,
(06:19):
because he was thinking of yetanother acronym and these long
phrases and then we kind ofstretched it or shortened it
excuse me to BACPAC and sothat's where it came from the
Black and African DissentCollaborative for Prostate
Cancer Action Network and thenkind of put it together, and so
(06:40):
that's how I remember it and mymemory is pretty accurate.
Dr. Nyame (06:58):
So I think that's how it came out and my memory is
pretty accurate.
So I think that's that's howyou know.
I went to, um, I got a degreeat a school that really was
known for branding.
One of the things you realizewas you know, uh, brands are are
useful in so many ways.
Right, they help withcommunication.
Um, one of the things I loveabout a good brand is, uh, it
(07:22):
brings the team together.
You's like, yeah, if you don'thave 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.
I remember back in the day thatall of a sudden, people were
like, all right, we're, we'rethe, we're the bulls, or
(07:49):
whatever you know, cause you,you wanted that identity.
And then you think about howstrong a brand, like even the
bulls brand at that time in thenineties, 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 alltogether.
I think that we actually weworked towards the name back in
a backwards fashion too, in thatwe decided that we wanted to
(08:13):
use BACPAC as the acronym andthen we were able to work
towards, um, you know, uh, aname that would fit that acronym
, and and Dante was responsiblefor that Dante really wanted us
to have BACPAC.
He was like, yeah, we're goingto wear them around.
So then that became kind of athing, which is, as you know,
(08:36):
grant Lee.
Now every event we have, we'vegot some extra BACPAC that we're
giving to new members andpeople who show up to hold all
their stuff together.
And I think, symbolically Dantesaid this right it's like where
you hold all of your valuables,your knowledge.
And so we felt like, you know,symbolically, the BACPAC
(08:59):
organization was going to holdall the things that were
important to us with regards toaddressing the needs of black
men who had prostate cancer.
So what is the purpose?
Grantley (09:10):
of BACPAC.
What is the purpose of BACPACthat you came?
Dr. Nyame (09:14):
up with.
I'm going to answer this andthen I'm going to step back and
let these two gentlemen talk.
Um, you know, I think thepurpose has changed.
You know, I think the purposehas changed.
(09:37):
Originally, BACPAC for me wasan opportunity to bring black
prostate cancer patientstogether to help us do better
research as an institution hereat the university, but we've
grown a lot since 2020.
We're a much different groupand I think we serve different
purposes now.
Um, but that the mission wassimple when we started.
You know, make black voicespart of the prostate cancer
research.
(09:57):
You know, you know, uh,ecosystem, if you will.
Um, it just was a missing voiceand we would be talking about
disparities in prostate cancerand there wouldn't be a single
black patient around to to evenshare a little bit about their
journey and experience, and soit made a lot of sense to me to
(10:23):
create space to hand power tocommunity.
But more you know, and handingpower to community is really
important, but I think handingpower and giving space to
patients right is one thing tobe black in America, but it's
another thing to be black andhave an illness or a chronic
(10:45):
disease that you're managingthat that mean that's a very
unique experience, um, and Ifelt that BACPAC was going to
allow us to have let people getinto that room, arm them with
the information to have theiropinions, matt, you know, be
heard, uh, and and influence,you know, um, the way that we
(11:09):
did research, because researchis how we make things better, uh
, in my opinion.
So, anyways, that's, that'sBACPAC to me.
I'm really curious to hear whatBACPAC means to Ben and Dante,
cause I think they they've beenthere from the beginning and
they've seen this thing changein a pretty significant way.
Grantley (11:27):
Thank you for that, dr Naomi.
So, before we move into whatBACPAC means to Ben and Dante,
why don't we have you guysintroduce yourselves?
Tell us who you are, what youdo and maybe your role in BACPAC
as well.
So who you are, what you do andmaybe your role in BACPAC as
well.
So who you are, what you do andyour role in BACPAC.
(11:49):
Go ahead, ben.
Ben (11:52):
I am a community activist.
At best it's all a lifetime.
Yes, it's a lifetime.
(12:18):
You know I've done other thingsfor for pay.
As some of you may know thatcommunity activism it's a lot of
difficult work and sometimes,true community activists, they
are bouncing their head againstthe wall.
One of the things that stoodout for me when this originally
(12:43):
started was some of thestatistics that Dr Niani said,
and the biggest one, of course,was that half of the there are
so many deaths here in Americawith prostate cancer and over
half of them are Black cancerand over half of them are black,
but there's only 3% of researchand science that were
(13:09):
associated using black people orblack men.
And that got me to really goingto say that we have got to do
our part.
We can't be dependent uponsomeone else doing something,
and it is that communityactivism that got me riled up
(13:33):
and tried to get other folks inthe community motivated to want
to rally behind this and dosomething, and that first
something, of course, as itcontinues to be, is early
detection.
How do we get more people fromthe community involved in the
(13:54):
early detection?
And it's interesting.
I thought that I knew theanswers to that and then I
realized that you know,sometimes, every now and then,
I'm not the smartest person inthe world Every now and then.
(14:15):
And so I listened and I heardand very enlightened and that's
where I'm at with BACPAC, howit's kind of evolved into what
it is now- Thank you.
Dante (14:34):
Yeah, let's see who I am and what I do.
Those are like two differentthings PhD student University of
Washington, community healtheducator, cancer health equity
researcher and a graduateresearch assistant with BACPAC
at the University of Washington.
I know we had this conversationearlier.
(14:56):
I've been here about, well,I've been with them for about
four years or so.
At this point I'm living herein Seattle, originally from
North Carolina, from Chicago,from where I'm from, we like to
say NC by way of Chicago and Ithink that Ben gets it.
So that's kind of my dad and Ithink my, my.
(15:24):
I know that my identity as ablack or african-american male
is important to me and it's um,interacts with my future work
and my research and so the workwe do at BACPAC it kind of
speaks on that.
Um, I look to like blend umresearch with social justice and
activism and communityorganization and and advocacy,
(15:48):
and so, um, that's that's alittle bit of me.
Um, former semi-pro athlete, Ican claim that uh in soccer, uh,
and um, yeah, that's that'spretty much me in a nutshell
yeah.
Grantley (16:07):
Are you excited for 2026 in Seattle?
Dante (16:09):
oh, yeah, yeah, yeah it's funny you say that.
Yeah, hopefully, I think it'sgonna be way more traffic than
we need, but I'm super excited.
I know my partner, my wife.
She's just like she was rollingher eyes.
She's like we're not going toall these games.
I'm like, all right, I guesswhat you say.
Grantley (16:31):
All right.
Dr. Nyame (16:32):
Yeah.
Grantley (16:34):
I tell people.
You know when I came, I tellpeople all the time I said you
think you know what beingfanatical about sports is
through football and basketball,but you have not seen what
fanatical about sports is untilyou see soccer people show up.
Oh yeah, for a World Cup game,oh yeah, I've seen.
(16:56):
It's a different level offanaticism.
Dante (16:58):
Different level.
I've seen Barcelona play inBarcelona twice and, like I, was
there when Messi scored his400th goal, career goal, wow,
yeah.
So anyway, we got off topic.
But yeah, that's it, we got offtopic.
Dr. Nyame (17:13):
Yeah, we got off topic, we sure.
Dante (17:14):
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 nestedin, coming from an organization
that did that and then beingnested in this organization
under the mentorship of somegreat people who are kind of
helping me along the way.
Grantley (17:34):
So you said you research in health disparities
and one of the things that is inthe purpose of BACPAC on the
website is you know we said thatthrough research we seek to
find out why prostate cancerdisparities exist and use that
knowledge to improve the healthof men in our community.
(17:54):
So just give us a little tasteabout what are some of the
disparities that you are awareof or that you are researching
as a PhD student that might bepertinent to this conversation.
Dante (18:06):
Yeah, so, oh, there's tons.
So we already know about, forexample, the incidents and the
mortality rates.
So you can find information onACS, the American Cancer Society
, or the NCI, National CancerInstitute, about the mortality
rates.
They're anywhere from 2 to 2.4times higher compared to men of
(18:29):
other racial and ethnicbackgrounds.
Also, you're looking at about60 to 70% incidence rate, which
means they're 60 to 70% morelikely to be diagnosed with
aggressive forms of prostatecancer.
So we're talking about black orAfrican-American men or African
descent men that also getprostate cancer more and die
(18:52):
from it more, and those are thetwo important ones.
And then we talk about earlydetection, for example.
So the screening that'savailable to get screened
Prostate cancer is verytreatable, so it's important
that men get screened.
So a lot of my research or worklikes to focus on prevention and
early detection, and so I tryto.
(19:14):
I like one of the things I dolike to talk to men about this,
about what works for them, whatwill get them into getting
screened, and some, there's somedisparities there.
What will get them into gettingscreened, and some, there's
some disparities there.
And, um, if you just listen totheir narratives and their
experiences, you can learn a lot.
So, um, I do do a lot ofqualitative work because I like
to talk, I like to interview ummen.
(19:37):
I think their experiences andstories are very important, and
so you know, for example, Ilearned that the DRE, or the
digital rectal exam, is not verypopular among black men from a
cultural, contextual standpoint.
So if we want them to getscreened, instead of hustling
that DRE and they refer to it asDr Dre, that's what they call
(20:02):
it they don't want that.
So one way to help them to getscreened is to kind of push them
towards other methods ofscreening that are simpler and
more effective.
And then also, we also know thatthere are some differences in
surveillance and follow-up carepost-treatment, for example,
from biopsies or surgery or forradiation, that follow-up care
(20:26):
looks different.
So a lot of the things that I'mreading about and studying
about Yaw and BACPAC and theteam are, you know, researching
those things and they're alsogetting these types of
experiences and stories.
You know from men, frompartnerships, from communities
of men and things like that, andso, when we look at early
detection and screening, youknow from men, from partnerships
, from communities of men andthings like that, and so when we
(20:47):
look at early detection andscreening.
We look at, you know, gettingyour PSA test.
We look at your follow-up careafter you've been diagnosed,
after you've had surgery orradiation treatment, or even,
for example, are providersgiving you all the options or
are they just like any surgery?
Or are they saying, oh, we'regoing to actively do active
(21:08):
surveillance for you, or do youneed this, what?
They're not getting all theiroptions, they're not getting all
the treatment options, they'renot getting all the information
and there's not enoughinformation that's readily
available in the context of theblack African-American men when
it comes to this, especially foraggressive forms compared to
that of, you know, their whitemale counterparts.
(21:31):
So these are some of the thingsthat you know I've come across
and there's tons of literatureout there.
Yeah, put me on a paper like acouple years ago by Emily Recon
I can't forgive me if Ibutchered the name where we
learned that from these majortrials that kind of looked at
PSA testing, and then I alsolearned that as part of that,
(21:53):
since like 1996 or maybe or 1990, I can't remember but most of
these trials that they collecteddata on and how well PSA
testing works, these sampleswere predominantly white men.
So we don't necessarily haveenough information on the
population that's affected mostby this disease burden compared
to white men.
(22:13):
You see what I'm saying.
So all these things arerelevant and they point to like
glaring disparities that existfor this particular disease.
And so, yeah, I kind of andthat's also important to my own
identity as a Black man, as aBlack male researcher.
So not only does like the workat BACPAC check all the boxes
(22:34):
for that, but I also consider ita very worthy cause because
this is a heavy disease burdenfor this certain population.
Grantley (22:42):
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 diagnosedwith aggressive prostate cancer
and even though he is white inthat population, this is an
opportunity for us to reinforcethe messages that you just
(23:03):
brought up about the importancefor black men to get tested and
early screening, because we knowthat the disparities are there.
Dr. Nyame (23:10):
Yeah, I want to say something about that just from
the clinical standpoint.
You know, uh, we have a reallyeffective test for detecting
cancers early in PSA and bloodtests.
You can add that on to anycheckup you know doctor's visit,
where you're getting yourcholesterol.
You know your sugar and otherthings checked.
(23:32):
You know, while your kidneysare working.
We really scrutinize this testand we've almost in some ways
demonized it and there are somepopulations that are very
vulnerable as a result.
So older patients, regardless ofhow fit they are, are more
(23:52):
likely to be told they shouldn'tget tested.
And in the early work we didwith Dante and Ben, we learned
from black men.
We interviewed that many timeswhen they approached their
doctors to say I want to get aPSA test to get screened, they
were being told oh don't, no,don't worry about it.
This, this cancer, is not thatserious and uh, um, for a cancer
(24:15):
that's disproportionatelykilling black men, right, and so
, um, I think the president'sexample is is a powerful one,
because here is the mostpowerful person in the country
with access to everything andwho knows?
I don't want to speculate, butwho knows?
(24:37):
But his age likely plays afactor into whether or not.
He gets this routine, what couldbe a routine test.
I don't like to use examples ofone to make strong arguments.
That's not the right way to goabout it.
I mean, I think if we learnanything from what black men are
(25:01):
experiencing, from what we seein the president, from what
black men are experiencing fromwhat we see in the president, we
definitely need to criticallyreevaluate how we use this test,
how we make it available topeople that should have it and
need it.
And, to be honest, that's beena big part of what BACPAC has
been doing over the last yearand a half is re-envisioning how
(25:22):
to test better and also how toget testing into the hands of
people in a way that won't harmthem but will allow them to
maximize that benefit that youget from catching a cancer early
.
Grantley (25:36):
You know you said you don't like to do it once.
So it's more than one, becausethe same thing happened to me
when I first talked to my GPabout getting my PSA tested.
He tried to talk me out of it.
In fact, he talked me out of itfor a year and asked me to look
into some of the research.
But I knew my family's historyand so I went back and I said I
(26:01):
want to have this test done andI want to start monitoring it
back.
And I said I want to have thistest done and I want to start
monitoring it.
So one of the things that we doon this podcast is we encourage
men to take control of yourhealth.
You know you're paying the bill.
It's your insurance, it's yourhealth.
You're the one who's going tosuffer with it, and sometimes
you have to be a little bit morepersuasive with your doctor to
say yeah.
I understand that you may notthink it was important right now
(26:23):
, but I'd still like to do it.
So then, once we startedtracking it, we saw my length.
Every time I had a PSA test thenumber went up.
From that very first time, allright, and then it started to go
up faster.
So the curve it was justcreeping.
And then the last three testsit just shut up.
But if we weren't tracking it Iwouldn't have known that and we
(26:47):
wouldn't.
It was changing.
Dante (26:49):
I had that done to me.
Yeah, speaking to what you bothtalking on, I requested, when I
asked for a PSA test aboutthree years or so ago.
I was kind of deterred from itas well.
I know the information, though,and what their assessment is
kind of based on, but it's stillan important test.
(27:09):
Like we need a tool to at leasttalk about prevention and to
get screened.
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 likethat.
(27:30):
It just seemed like the wholeconversation was kind of
deterring me from getting it,and so I kind of had to press
for it.
I was like, listen, you'realready drawing, doing a blood
draw.
Just add it on.
I would like it, you know.
So it's kind of taking charge ofyour own health and knowing the
information.
And given that I knew theinformation and I wanted to tell
him man, do you know where Iwork?
Like, give me the test, I knowwhat I'm talking about.
(27:51):
Let me get the test.
You don't know me.
Like, give me the test, I knowwhat I'm doing.
I have other healthcircumstances but I thought it
was important to have.
So you're absolutely right whenyou know men should take you
know, control their own healthand know the information and you
know it's a, it's a good test,especially for you know.
(28:13):
It's important tests for blackmen to know and to get started
early because most times they'renot diagnosed until later ages
and by then it could haveadvanced as far as the stages.
Ben (28:25):
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 thatfolks go through.
(28:49):
And uh, of course, I was goingthrough 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 ofthose that have.
I may have dreaded it, but Ihad the annual DRE and it was
(29:14):
just, I just looked at it assomething that I had to have.
The other thing, and it was atthat point, it was actually a PA
that did it and she said, Ithink you probably need a PSA
test, man.
I was 61.
And, yeah, I was 61.
(29:37):
And so I said, sure, sure, whynot?
I haven't had one in about twoyears?
And she said, yeah, I haven'thad one in about two years.
I did it and sure, it came back.
My number was very elevated andso I went to a urologist and
(30:04):
things just flew from there andabout four months later I made
that decision.
But it is one that, when you'retalking about men and their
health, it is.
You can go into the doctor forone thing, but there are many
(30:24):
other things that you could alsoask that doctor to check and
test, and that's something that,through BACPAC, we're able to
get more people to be aware.
Because I have been living inthis area about two and a half
(30:46):
years a little more than two anda half years now and still just
getting to know my neighbors.
And my neighbor stopped me.
He was riding in the road andthe next thing I know he was
telling me about his prostatecancer treatment and what he was
going through.
And you know, both of us areretired and it's kind of amazing
(31:09):
because we sat there and wetalked.
But I have six people that Italked 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'sprobably because of so many in
(31:30):
this area that are now seeing itand seeing and it is important
for us.
Dante, my point here is this isthat, Dante, when I was doing my
study or a little survey that Iwas doing there in the
(31:52):
community, dante said thatperhaps we need to go to younger
men and at first I thought why?
And then, after he said it acouple of times and very
demonstrably, I was appreciativeof it.
Though I was appreciative of it, though I was appreciative of
(32:13):
it.
It wasn't rude, it was justtrying to make me understand
that the earlier that we getfolks tested, or at least
knowing knowledgeable about it,the better off that we are.
And that's what I'm seeing, isthat, from based upon the
(32:38):
surveys and studies that arecoming out now, that this is
important for us.
It's important for us to takecontrol of ourselves, and the
only way of us taking control ofourselves is being
knowledgeable about it.
And our job at least my job isto go out and spread the word
(33:02):
and make sure that people havethat opportunity to at least
seek the knowledge.
At least seek the knowledge.
Maybe not because I can't tellyou I can't tell someone all
about prostate cancer, becausethat's not me.
What I can tell you is theexperience that I went through,
(33:24):
and I know that everybody'sexperience is going to be a
little different, so proud ofthe fact that I'm a part of
something that is disseminatinginformation constantly, and new
information and currentinformation on what's going on
in the world of the process.
Grantley (33:39):
Thank you.
That is a great transition tothe next part of our
conversation is the work thatBACPAC is doing and hopes to do.
But before we get into that, Iget into that.
I've got one more question justfor clarification and then
we're going to get into the work.
So, um, Dante, Fred HutchCancer Institute work for at ,
(34:03):
is that correct?
I used to.
Dante (34:04):
That's where, yeah yeah, yeah, now you're at the
university.
Yeah, I'm at.
I'm at the now and I'm withBACPAC and Yow at University of
Washington, maryland.
Grantley (34:13):
Right.
So you and Dr Nyame are at theUniversity of Washington.
So the question is is BACPAC apart of the Fred Hubbs Cancer
Institute, Is it part of theUniversity of Washington or is
it a standalone organizationthat is just affiliated with
those organizations because ofwhere we're located, I don't
(34:36):
know who wants to take that calloh man, I figured so.
Dr. Nyame (34:42):
Uh, we?
The truth is we don't know.
I mean, it's nobody reallyunderstands what BACPAC is right
.
If you ask some of the peoplein my department, they kind of
talk about our research team asBACPAC.
But you know and then you know.
Obviously we who are involved inBACPAC know that it is a
separate group of men.
(35:03):
I think the vision and thedream is that it's standalone,
that we have a group of apowerful group of patients that
can go to any researcher in thecountry and say, hey, you're not
doing it right or we can helpyou do it better.
Right now our research teamgets to take advantage of that,
(35:26):
you know, every week.
But I think that's the vision.
So the answer to your questionis I think it's separating.
It started out as a UW entityand very intertwined, but I
think we're starting to have anappropriate separation so that
(35:47):
the group can influence, advise,support independently without
having to feel like they have tobe representative of the UW or
Fred Hutchins' agenda.
Right, there's some freedomthere if it's not a university
entity.
So I think that's important.
Grantley (36:08):
So what made BACPAC different from other prostate
cancer organizations?
Is it the patient focus or isit the research focus?
What would you?
Dr. Nyame (36:21):
say the most obvious is the focus on Black people.
I mean, you know, there's a lotof organizations out there.
Prostate cancer, cancer iscommon y'all.
We talked about this in ourlast podcast but one in eight
men, one in six black men,you're uh are going to be
diagnosed in their lifetime, soit's very common and so, uh,
(36:45):
there's a lot of greatorganizations prostate cancer
foundation zero.
There's even an advocacyawareness education group called
FINN that is started by TomFarrington.
A Black prostate cancersurvivor has done a lot of work.
But I think, you know, our focuson Black people was one
(37:06):
differentiator.
Then the second was a research.
You know, I think we didn'twant to come together with the
purpose of educating or gettingthe word out as our only focus.
We wanted to help do theresearch that would make doctors
and healthcare providerspractice differently, and I want
(37:27):
to.
I got to say this.
I said I would keep my wordsbrief.
That's never true.
Um, this idea that we have tostudy what, what, the why, the
disparities exist as a, aswasted energy, we we've known
that's been reported on for along time, right.
So I think what we do, that'sdifferent is we're studying how
(37:50):
to make those disparities goaway.
That's different, right.
So you know we're doing allthis work, we're having all
these conversations, we'rebuilding towards studies that
will prove that we can do betterand that in doing that, you
know, we're providing theammunition, hopefully, for
(38:11):
others to do the same.
What do I mean by that?
We spent a good chunk of ourWednesday evening meeting
talking about we don't need totest whether or not people need
social support.
To have more than 2% of thepeople be from a rural area or
be Black, latino, you know,indigenous, then you got to
(38:39):
provide the social supportthat'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 alot of energy and time trying to
describe the things that havebeen true, um, in health care in
america for, you know, 50, 60,100 years.
(39:00):
Uh, we're really focused on howwe overcome those things and
the group provides so much richinformation, novel thoughts on
how we approach that that are, Ireally think, going to be game
changers.
In 10, 15 years You'll lookback at the results of the
studies this group is doing andsay, wow, you know right, this
(39:24):
was a turning point in how weapproached cancer research in
the US.
Grantley (39:30):
So we're going to get into the details now, based on
these two questions what is thevirtual research community,
which is something that we talkabout, which I think is unique
to us, how does it work?
And then the second part of itis what, specifically, is some
of the work that BACPAC is doing?
(39:52):
We talk about the research thatis happening and that kind of
stuff, but I want to get intosome of those specifically.
So let's should we start withthe work that BACPAC is doing
and then come back to thevirtual research community, or
is the virtual researchcommunity a good springboard
into the work that we're doing?
Dante (40:12):
Dan to you, I guess we could talk about the work, I
guess, and then the virtualresearch community, because that
sort of advises a lot of thework.
Grantley (40:25):
Okay, okay, so give us an overview of some of the
specific work that BACPAC isdoing right now.
Dante (40:32):
Oh wow, that is a whole separate show.
Grantley (40:37):
Yeah, just give us the topic of.
Dante (40:38):
Maybe the focus yeah, yeah, I might want to give you
that it's.
His catalog is deep, ok, I canAll right, please stop me and
correct me and jump in by anymeans.
So is there's multiple studiesand projects going on, some that
are current, some that areabout to start.
Um, currently there's there'sthe STAR, which is focusing on
(41:02):
secondary treatment afterradical prostatectomy, and black
men.
So, looking at follow-up carefollowing your diagnosis and
your your prostatectomy, I'mcurrently doing interviews with
patients for that as well, andwe're looking at patterns of
like outcomes for secondarytreatment and post-surveillance,
(41:23):
like what are those differencesin your post-treatment
experiences and why do theymatter?
So that's that's one.
Um, you know, jumping at anytime, explain more if you need
to, yeah then um, there's alsothe, the GEMS, again, with these
acronyms um, germline,environmental, social, something
(41:46):
structural GEMS, um, and that'slooking at like determinants of
aggressive and lethal prostatecancer and black men.
And that's an important onebecause it's like building a
cohort or a group of black mento study biological factors of
aggressive prostate cancer andlooking at any like genetic
(42:07):
mutations and forming abiorepository or, like you know,
collecting samples and tissuesamples and things like that to
look at these and to look at howit's affected.
That's a really huge one, Ithink, and I'll let him speak
more of that in a minute.
And then there was EDAB, and Idon't remember the acronym, but
that's like multi-stakeholderengagement.
(42:28):
That's also important, soorganizing and creating equity
around like prostate canceroutcomes, looking at early
detection.
So organizing thesestakeholders and having actually
Black men advise us on likesolutions or to increase early
detections, like how can we doscreening tests, better
strategies around PSA testing.
(42:49):
It's very patient centered andit's very patient engaged, and
so these men come together asadvisors and they kind of
identify any strategies andscreening that are needed or
early detection, and they kindof drive our research agenda.
And then there's COMBAT PC againanother acronym, but that one's
about creating like a resourcetoolkit and it's developed in
(43:11):
like partnership with black menwho are trying to help create
these resources along withproviders.
It gives you information onclinical trials.
It gives you information on PSAtesting, what tools could help
raise awareness, or what toolsor resources you can be armed
with during a clinical encounterto help you with your shared or
informed decision-making whenyou're talking about your health
(43:34):
on the prostate care continuum.
And then so, and there's thebig one and I'll let him speak
to that where we're trying toform like a cancer health equity
hub or center.
That's kind of going toorganize all of this work, where
BACPAC is going to be housed inthis and developing different
interventions and support andalso hosting like cancer center
(43:56):
activities.
So there's going to be communitybenefit grants, there's going
to be uh, you know, aorganization helping push the
work forward.
It's even supporting, liketrain the trainers or citizen
scientists are helping black mento empower their own care, like
training them to do some of thework and the research, and even
(44:18):
, hopefully, an activity wherewe support future people or
students who want to do thatwork 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 bigoverview.
Feel free to jump in Yao, butthose are the ones that come to
(44:41):
mind that are current.
Dr. Nyame (44:42):
Yeah, that's a good summary.
The way we look at it is youcan't affect this big problem.
You know, ben, you know, saidat the beginning that black men
are twice as likely to die fromprostate cancer I think Dante
also alluded to that 50% or somore likely to be diagnosed.
(45:03):
So the burden is huge, right,and we calculated that burden.
You know it's a lot of lifelost due to prostate cancer.
I think we talked about that inour last show.
So when you have a complexproblem like this, the engineer
in me, from way back when when Iwas an engineering student,
(45:26):
feels that you solve complexproblems at multiple points.
Right, you can't, you can'tjust go in the equation and, and
you know, move one particularsmall piece of it and expect the
output to be different.
Right, you gotta approach it atall in in the ways that you can
(45:46):
and all the different pointswhere it needs assistance.
So we did we.
We looked at the problem fromstart to finish, from diagnosis,
through treatment, through toto to death, and said how can we
alter death?
Right, and what we've learnedin our conversations is that
there are all these differentpoints where we might let
(46:08):
patients down.
Right, we might not bescreening enough.
We certainly don't understandwhy black men are getting more
cancer.
We need to figure that one out.
That's been true for a longtime.
Once people are at theirdecision point, we're not
supporting them to get treatedright, and maybe then they get
(46:28):
overwhelmed and they eitherdon't get the right treatment or
they walk away from treatmentwhen they should get it.
And then once people aretreated or they get supported
right, that's a whole notherjourney.
So that's why Dante's heredescribing all these different
projects.
They're kind of supporting,they're holding up and
addressing all those differentpoints.
(46:49):
And you, you know what we'vedone is we've done our
preliminary work right.
We kind of understand how wewant to approach supporting
those different arenas.
That's what the last few yearswas was just getting a lay of
the land or understanding thelandscape.
And I think the next three, fouryears is all going to be about
action, which is going to be fun, right.
(47:10):
It's going to be going totrials and studies and seeing if
the things that we think aregoing to be beneficial actually
help right.
And, to echo the words of Benat a meeting from last year, we
want our studies to helpeverybody right.
To help everybody right.
(47:33):
The goal is to make sure thatif you get in a study that's a
BACPAC study that you come outthe other end bettering yourself
, your health, in some way, um,rather than like really trying
to say okay compared to doingnothing or compared to what you
might have experienced in yourcommunity.
If you're lucky and the computerdraws you to the BACPAC, you
know deluxe package, you'regoing to do real well.
(47:54):
And if you don't get the deluxepackage, well, good luck.
Like we're not, we're notreally interested in that.
So it's been fun and that'shelping us reinvent the way we
think about how we're going tomeasure benefit too, right,
that's what I mean by.
Maybe in 10 to 15 years we mayhave had a really positive
impact on on the field becausewe may help people think about
(48:18):
being more patient and communitycentered and what.
What we think is a meaningfulbenefit Right Right now.
Benefit is just like lesspeople die, right, but that's
not good enough.
Grantley (48:31):
So yeah, and the thing that I think about is, as we
solve these issues, as we get tobetter understand, you know,
why there's disparities in theBlack community, why people are
diagnosed more and moreaggressive and more lethal.
It also benefits the entirepopulation as a whole, right,
(48:57):
the entire scientific, entiremedical community as a whole,
because hopefully, what we arecoming up with are also things
that can be used in other areasof the prostate cancer world.
So, ben, what's your role inany of these studies?
Are you involved in any ofthese studies?
How do you fit in?
Ben (49:37):
Has questions come up or creation of some of the
questions that are being askedin some of the surveys, my
experience and roles within thecommunity and how folks talk to
me.
I once did I was was doing partof the survey and I was sitting
(50:01):
around.
There must have been 10 guys, Ithink, and 10 black men that
were sitting around and 10 blackmen that were sitting around
and you know the the I think Isaid it to you Before we got
started how we're in this group.
None of us had the code switchand because none of us had the
(50:27):
code switch, we got got thoughtsor answers or things that were
said that we probably wouldn'tsay in any other type of group
except for that.
But because we were there andwe were only focused on prostate
(50:48):
cancer and and when you hadreal health, we were having real
talk, and the real talk saysthat some of the things that we
don't think about or we don'ttalk about in polite circles,
(51:13):
and so that's what getsinterjected into my
patient-centered focus withBACPAC.
Grantley (51:25):
So one of the things that we talk about and I think
Dante and Dr Naomi you mentionedit is the role of patient
advisors, and it seems to methat that's also one of the
unique things about BACPAC.
Obviously, I'm not an authorityon all the research going on in
science, but it seemed to melike this topic of having
(51:47):
patient advisors and patientinput to the research is unique
to BACPAC, or maybe semi-uniqueor maybe better, not popular in
the industry.
Is that true or is it?
And also, what do you see thebenefit for having patient
advisors?
Dr. Nyame (52:06):
I mean, every good new idea you have is kind of an
old idea, right.
I think partnering with peopleto do better research has been
around in various forms.
Certainly partnering withcommunity you will hear terms
like community-based orcommunity-partnered research
that exists for community-levelinterventions, right, and so a
(52:30):
good example of that was thepushes to do more colorectal
screening.
You know, getting people to becomfortable thinking about
colonoscopy by training yourbarber to have that conversation
, and people actually started todo that with prostate cancer
screening too, right.
So you're getting your cut andyour barber your well-trained
(52:50):
barber, she's talking about, youknow, the NBA finals.
And then they switch up and say, by the way, you know about
colon cancer and that's beenreally effective, right, and
that was one of thosepartnerships between researchers
and community members.
I do think that what we'redoing is unique for the, the,
(53:13):
the, the thing we're trying toaddress.
We have collaborators and youknow people that we work
alongside here at the universitythat are doing this and other
similar populations.
So actually we are doing thisroses project.
Now BACPAC that's not myacronym, by the way, so I can't
take credit for all of them.
That's Dr Kemi Dulles, but sheworks with Black women around
(53:37):
endometrial cancer, right.
So similar concept.
But what's interesting to me isin medical research.
But what's interesting to me isin medical research, even in
medical care delivery, we don'tdo the thing that business
people do, right, like and I saythis all the time, ben and
Dante have heard this a milliontimes but you know, you don't
(53:58):
open a business in aneighborhood of any type, you
know, coffee stand, t-shirtstore without understanding what
the people want and need, right, you don't just get an
investment to open your doorsand then just start selling
coffee certainly not going toopen that store next to another
coffee store.
You know, you do your researchand you understand where the
(54:19):
need is and how to serve best.
And we, that's not beenrequired in medicine.
You know, we uh, I hate theterm we sit in the ivory tower
and, um, and we, we, wepontificate.
It's my favorite thing to havein the medicine why?
Why do you think black men have, like, have you talked to any
black men recently?
(54:40):
Like you know, they may havesome thoughts, and so that's
been really great for us.
What I also love is atrickle-down effect Some of the
things that we say in our roomwhen some of our collaborators
are there that do different typeof work.
They hear it and then all of asudden, two years later, I'm
(55:03):
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 thinkabout the uh, the power in the
(55:30):
room.
I also love how differenteverybody is in the room, cause
sometimes when people look atthis problem they just say black
man, boom, right, just like onecategory, right.
And you guys know what I'mtalking about.
You know all the differentpersonalities, all the different
walks of life, that all has tobe represented when you think
about the problem.
So yeah, you know, I don't wantto take credit as, like Dante
(55:55):
and me and Jenny and ourresearch team, we're doing
something revolutionary becauseit's it is old, you know this
partnered approach been aroundsince at least the 80s, like in
a formalized academic context,right.
But yeah, I think we're doingit different, right, which is I
think that's what makes it alittle bit more modern,
(56:17):
especially applying it to bigclinical trials, which is really
our goal.
That's going to be different.
Grantley (56:22):
Thank you.
Dante (56:24):
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'reconnected, you know, throughout
the country and it's virtual andum.
They each kind of advise orhave input on various activities
(56:45):
and studies you know for BACPAC, and so it's just a way of
keeping everybody sort of youknow connected and there's
opportunities where they canprovide direct input on, you
know, some of the surveys orsome of the cancer research that
BACPAC is doing.
They also can participate inwebinars and educational content
(57:08):
that's on our website and, yeah, they help us connect with
other community-basedorganizations, other researchers
, and so it's kind of like a bigcollaborative and that's pretty
much what it is, yeah.
Grantley (57:22):
How many people are involved in it?
So far, okay.
Dante (57:24):
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 gota huge response and then he was
concerned that some of themwere bots.
And then he because it was like2200, 2400 people, um, and he
was like, oh man, those are bots, those are.
(57:46):
And he was like I'm going tocheck.
And then I believe that theychecked and there weren't.
So it's a pretty big, prettybig network.
It's up there like between1,500, 2,000 people who are
involved and we keep in touchwith them via.
You know, web internet virtualmeans those type of things.
You know, web internet virtualmeans those type of things.
So it's a pretty big networkthat's associated with BACPAC
(58:08):
that helps drive our work andour research agenda and just to
stay connected.
Dr. Nyame (58:13):
Yeah, it's a big group 20, over 2,500 people,
over 1,500 prostate cancersurvivors.
So it's a big group, Big group.
And you know I still worry thatthe people are not, that we have
(58:33):
some bots and not everyone isreal.
It's an internet-based group,right, but I'll tell you, dante
is interviewing people from thisgroup.
So, you know, what we wanted todo was have an audience of
people that were willing to lendtheir voices on their
experience, to kind ofsupplement what we have in our
smaller group.
You know the 20 men or so thatyou know 25 men that come to
(58:56):
Seattle and work with us andjump on Zooms, and so we put out
a request to do some interviewsof people that were not part of
our advisory team, that were inthe virtual research community.
And, according to Jenny, eventhough AI is really good, dante
has talked to some real humanbeings from what we know.
(59:17):
So it's really exciting thatwe've had an opportunity to
expand BACPAC to include, youknow, this virtual component.
Grantley (59:27):
Yeah, I think that's a really exciting part of what we
do and I forgot to say thisearlier.
But just for full disclosure, Iam one of the patient advisors
on the GEMS study, just to putthat out there.
So I'm not just doing thisinterview as an interviewer, I'm
doing this interview as aparticipant and also a patient
(59:48):
survivor.
So just to make that clear,just our guess.
Some of my thoughts may bebiased by my experience and
these guys are good guys to hangout with.
We have a good time togetherwhenever we get together Very
good time Pretty fun.
Yeah, we have a good timetogether whenever we get
together Very good time, it'spretty fun.
Yeah, I was surprised when Iactually got the invitation from
(01:00:09):
you to join the GEMS group.
I was like, okay, but I'velearned so much since I've
joined that group.
The sessions we have, thelectures and the training to be
a patient researcher has beeneye-opening and actually
mind-blowing at times when Ithink about it.
(01:00:30):
So what are some of the eventsthat BACPAC supports and what
events do we have coming up thatmaybe our listeners and our
viewers could also get involvedin?
Dr. Nyame (01:00:45):
Yeah, so our group, the gentlemen on this, uh, on
this podcast today, plus about25 more, maybe 30, get together
once a year to just do the work.
Right Cause, because of the waywe we formed and where
everybody's all over the countryI guess we haven't said this,
but we got um brothers coming infrom what?
(01:01:06):
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, youknow it's good to work in person
at least once a year, right,and we're actually there's a
(01:01:29):
call out for us to maybe even doit more than once a year, maybe
twice.
So that is a but that's aworking meeting for BACPAC and
that's kind of internal business.
On October 4th we're going tohave our symposium that's open
to the public.
October 4th we're going to haveour symposium that's open to
the public.
Uh, we opened the cancer centerdoors.
Our, everyone from our team, uh,is out there and that event
(01:01:52):
really is to do what has becomesomething that is a request of
the BACPAC advisors.
Right, you guys say we got toget the word out.
Pretty much every time we meet,we have to get the word out
about prostate cancer, aboutscreening and so we really want,
and about the research we'redoing, like what we're learning.
So we want to use the symposiumto do that.
(01:02:14):
So we got a date.
We're partnering this year withZero, a big advocacy
organization.
We got a really incredibleslate lined up.
You're going to get to hearfrom everybody in the group in
some capacity.
So we're looking forward tobuilding community and educating
(01:02:35):
at that event.
Grantley (01:02:37):
And that's going to be at the Fred Hutchinson Cancer
Institute.
Dr. Nyame (01:02:40):
Yeah, it'll be on the Fred Hutchinson Cancer
Institute, but it's a hybridevent, so when we go live, maybe
we can share the link and theQR code to be posted along with
this episode.
But you can sign up.
For those that are not inSeattle or can't make it in
person, there will be an optionto hop on the Zoom and at least
participate, as you can.
Grantley (01:03:02):
Is it limited to just the United States or people in
other countries can register?
Dr. Nyame (01:03:06):
We had one person from a internet, one
international participant, lastyear, so we we have capacity to
have another timezone s mightmake it tricky.
Uh, I know, every time I callfamily in Ghana they're like
seven, seven hours ahead.
So uh it might be somelimitations there, um, but yeah,
all are welcome.
Grantley (01:03:27):
Yeah, so we talk about the research, we talk about the
patient advisors, we talk aboutthe virtual research group, we
talk about the symposium that'scoming up in October.
Is there any other way thatpeople can get involved with
BACPAC?
I mean, we're not a membershiporganization, yeah, we're not a
member you have to use, andstuff like that.
How could people get involvedwith BACPAC?
I mean, yeah, we're not amembership, yeah, we're not a
member you have to use, andstuff like that.
(01:03:48):
Well, how could people getinvolved.
Dr. Nyame (01:03:50):
so I think, uh, the two ways to get involved.
Number one if you want to haveyour advice, um, your
experiences, your knowledge, bepart of the prostate cancer
research apparatus.
If you will ecosystem, I saidearlier I need to come up with a
simpler word, but you can signup for the virtual research
(01:04:12):
community.
We send surveys, often paidsurveys, where your voice can be
heard and you can share yourexperience, 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 paidinterviews or you get an
(01:04:32):
opportunity to share yourexperience and we demonstrate
how much we value your time inthat endeavor by providing a
small fee for that consultantfee, if you will.
So the virtual researchcommunity is a great way to get
involved.
Number two if you're a survivorand you want to be on one of
(01:04:52):
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 foryou.
Poor Ben had to say felt likehe had to say yes to all this
work, and now we get to spreadit around.
I had to say felt like he hadto say yes to all this work, and
now we get to spread.
I had the email, Ben.
Now we get to spread it around.
Grantley So, , you said I'msurprised you asked, but you,
(01:05:13):
you know, at the symposiumyou're like, if there's a
project, I'm willing toparticipate, and there's always
a project, so uh, there's, that.
There's good way for people tobecome advisors.
And then the third, and this isa plug and hopefully you can
share the link you know theBACPAC Team.
We're doing a walk, run, bikeride event here in Seattle as
(01:05:34):
part of a Obliteriteride.
That's going to call attentionto our mission.
It's going to help us raisesome money and a great way to be
in community, to be active andto demonstrate the power of
being a cancer survivor orcancer researcher.
I'm really looking forward togetting the group together for
that event and to show out, asthey say.
(01:05:56):
I think we'll have some BACPACswag for the team and we'll be
loud and proud as we advocatefor better prostate cancer care
for black men.
So be on the lookout for thattoo.
Grantley (01:06:10):
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 candonate to that.
Three of us already signed upfor that and, um, I already had
(01:06:30):
my injury, so I don't want to doreally well.
My chain came off my bicyclethe other day going up here.
Oh, sorry to hear that.
My foot landed on thederailleur.
It's not good, but I'm doinggood.
I'm looking forward to that.
(01:06:51):
That's going to be fun.
So, as we wrap it up here, ourtime is coming to a close.
As we wrap it up here, I reallywant to thank you, gentlemen,
for being here, but is there anyclosing comments that you would
want to share with ourlisteners or any words of
encouragement?
Let's start with you, ben, andthen we go to Dante and then we
(01:07:12):
have Dr.
Nyame close it out.
Ben (01:07:14):
For me, it's always.
I'm grateful to be a part ofthe community, part of the
community.
It is many days, for personalreasons or personal health
reasons, that the folks in thiscommunity have given me that to
(01:07:43):
move forward and not be soself-centered, so to speak.
I'm still.
I still have this overinflatedego and I wear hats to try and
keep it in check.
The reality is that it is aBACPAC at this point that, even
(01:08:11):
from the virtual standpoint,that has given me greater hope
(01:08:32):
for all of the things that Iwanted to see happen in my
lifetime.
From the health community, Iknow that prostate cancer is
just one thing, but it's onemajor thing, especially for
African-American males, and I'mjust glad to be a part of.
Dante (01:08:49):
Yeah, I'm echoing some of the sentiments as well.
I'm also uh glad to be a be apart of it and uh thank.
Also thank you to to you,grantley, for having us here
today, and uh also thanks to toYao and Ben.
Um, ben was like my number oneguy.
I had a lot of partners, but Ireached out to Ben for
(01:09:11):
everything, and so I'm gratefulfor that and hopefully I would
say hopefully we have a chanceto connect with you know Black
men out there and that theyreach out and be a part of this,
Because I really believe thatyour voice matters and your
experience matters and you canreally help us push the work
forward.
(01:09:32):
I think that this is a trulygood organization.
It's really good work and I'mproud and excited to be a part
of it.
I think it's a part of my ownjourney and I think it's part of
my own journey and I think it'sgreat.
I have the opportunity to workwith tons of patients, speak to
a ton of men and learn a lotfrom them.
So, for those who are watching,listening, hopefully you can be
(01:09:55):
a part of that experience andwe hope that we have the
opportunity to connect with youand kind of address this issue,
because prostate cancer amongBlack and African-American men
is is is a heavy disease burdenand um, we want to make sure we
have the chance to address it.
So that's all and thanks forhaving uh having us on today.
Dr. Nyame (01:10:16):
I mean I I echo what what Ben and um and Dante have
said this um, this experiencehas been an incredible one.
It's been a been a fun ride.
Uh, one of the things that Ilove most about this is the
community.
We have real friendships, right, um, you know, the first time
(01:10:36):
met ben, you put your hand outnice to meet you, sir.
You know it's a little stifferhandshake.
You're still feeling each otherout.
You're're grateful for thepartnership, but it's not the
same as when I see Ben now and Igive him a big hug and you know
it's just.
There's a warmth there thatreally exists.
There's a respect there that'sreally hard to put into words.
(01:11:01):
And so you know I want thatcommunity to grow.
You know, selfishly, I wantthat.
(01:11:28):
I want others to have thatexperience.
You know other survivors whowant to make a difference, to
know that there is a space wherewe can help you change what you
don't like about the way thatthat prostate cancer care is
being given or approached.
And so I think that's my finalwords.
If you're sitting at home andyou have a long list of the
things that we're doing wrong inhealth care with regards to
prostate cancer, there's a placefor you to share that list and
try to make things better sharethat list and try to make things
better.
Grantley (01:11:46):
And our website is BACPAC B-A-C-P-A-C-network.
org and you can see the virtualcommunity there, some of the
work that's being done.
You can also sign up, as wesaid before, if you want your
voice to be heard, if you wantto communicate with us, you can
see it through BACPACnetwork.
org .
(01:12:07):
Thank you, gentlemen, for yourtime, Thank you for here today.
It was a great discussion and Iappreciate you and thank you
for giving us the hour hour,your time to share with our
audience.
Yeah, absolutely.
Write us at real health blackmen at gmailcom
(01:12:29):
realhealthblackmen at gmailcomTo support this podcast.
Go to buymeacoffee.
com forward slashrealhealthblackmen, buymeacoffee
.
com Real Health Black Men and tobecome a corporate sponsor,
(01:12:50):
send us an email.
So we already know about, for example, the incidence and
the mortality rates.
So you can find thisinformation on ACS, the American
Cancer Society, or the NCI,national Cancer Institute.
About the mortality ratesthey're anywhere from 2 to 2.4
times higher compared to men ofother racial and ethnic
(00:23):
backgrounds men of other racialand ethnic backgrounds.
Also, you're looking at about60 to 70% incidence rate, which
means they're 60 to 70% morelikely to be diagnosed with
aggressive forms of prostatecancer.
So we're talking about Black orAfrican-American men or African
descent men that also getprostate cancer more and die
(00:43):
from it more.
Grantley (00:59):
This is the Real Health Black Men podcast, where
we empower men to take controlof their health.
We provide vital informationand build community support.
Join us as we discusseverything from major health
challenges to mental wellness tophysical fitness.
So if you're ready to level upyour health and your life,
you're in the right place.
Let's get started.
Welcome back to Real HealthBlack Men.
(01:27):
Thank you for listening.
Thank you for your support.
Today we're discussing a topicwhich is very dear to my heart.
It's an organization calledBACPAC, and I have some friends
with me who are going to help usunderstand who BACPAC is, what
we do, why we exist and how youcan get involved.
So today, my guests are DanteMoorhead, Ben Young and Dr.
(01:52):
Yaw Nyame.
You've heard from Dr.
Nyame on our previous episodeabout your men's urologic health
and you may hear some more fromhim today, but today we're
going to focus mostly on Danteand Ben telling us the story
about BACPAC.
So, gentlemen, welcome.
Yeah, thanks for having us.
Let's begin by saying whatBACPAC is and then having you to
(02:18):
introduce yourself.
So who wants to tell us whatBACPAC means?
Go?
Ben (02:24):
ahead, ben, go ahead.
Ben wants to tell us whatBACPAC means.
Go ahead, ben, go ahead.
I was hoping that it wasdaunting.
BACPAC is a an organization.
Um, that started, um it were.
There were a lot of starts.
I would say that there were alot of starts, as far as I know
(02:46):
of.
I was doing some social justicework up in Snohomish County,
washington, and someone orsomehow I got connected to,
Dante Moorhead, who was at thetime working for Fred Hutch
doing some field work on ouroutreach work.
(03:09):
Long story short, I didn't getany funding direct funding from
him, but he invited me tosomething else and on how to
write a grant.
Um, I didn't really knowexactly what I was getting into,
(03:32):
but I went nonetheless and, um,I was partnered with, uh uh, Dr
.
John Gore as my.
I can't remember what the termwas that they called it, but he
was my.
Dante (03:52):
I think they paired us with like grant mentees or
writing mentees or, at the time,and it was interesting
conversation because it was onprostate cancer.
Ben (04:04):
It was interesting, interesting conversation because
it was on prostate cancer and Idon't believe at that time that
I had explained to anyone thatI had just gone through prostate
cancer myself, a prostatectomymyself, a partial prostatectomy,
prostate to me, and, uh, so itwas.
(04:31):
It was new, fresh, but it wassomething that I was definitely
interested in because I knowthat 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 allI was seeing was the medical
side of it.
Grantley (04:50):
And as it related directly to me as opposed to
relating to the community, soyou guys came up with the name
BACPAC Black and African DescentCollaborative for Prostate
Cancer Action.
How'd you arrive at that name?
Well, go ahead.
Dante (05:10):
It's a group discussion.
Yeah, it was, it was a groupdiscussion, um, so for those,
okay, so how it came about, fromhow I remember it you can
correct me if I'm wrong here butfor those who know yao, he has,
he's big on acronyms likewhenever he's doing a project
he'll come up with these likemarketing names and acronyms for
something, and then it'll belike star or this and that third
(05:32):
, and so we're having a groupdiscussion about names and we
came up with a different coupleand then he, he uttered this
phrase like the black andAfrican descent, for he's
thinking that out in his head.
And so, um, and him and hiscool acronym names.
And then, as he's doing that,um, I remember jenny was like
(05:56):
like BACPAC, shout out to jennylee.
And she was like like BACPAC.
And then I just remember I waslike, yeah, how about BACPAC,
like like a backpack?
And at, just remember, I waslike yeah, how about BACPAC,
like like a backpack?
And at that point I was likeyeah, yeah, because we can have
brothers walking around withBACPAC and it's a good look, you
know, and I still have myBACPAC.
We got that swag, but that'show the name came around,
(06:19):
because he was thinking of yetanother acronym and these long
phrases and then we kind ofstretched it or shortened it
excuse me to BACPAC and sothat's where it came from the
Black and African DissentCollaborative for Prostate
Cancer Action Network and thenkind of put it together, and so
(06:40):
that's how I remember it and mymemory is pretty accurate.
Dr. Nyame (06:58):
So I think that's how it came out and my memory is
pretty accurate.
So I think that's that's howyou know.
I went to, um, I got a degreeat a school that really was
known for branding.
One of the things you realizewas you know, uh, brands are are
useful in so many ways.
Right, they help withcommunication.
Um, one of the things I loveabout a good brand is, uh, it
(07:22):
brings the team together.
You's like, yeah, if you don'thave 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.
I remember back in the day thatall of a sudden, people were
like, all right, we're, we'rethe, we're the bulls, or
(07:49):
whatever you know, cause you,you wanted that identity.
And then you think about howstrong a brand, like even the
bulls brand at that time in thenineties, 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 alltogether.
I think that we actually weworked towards the name back in
a backwards fashion too, in thatwe decided that we wanted to
(08:13):
use BACPAC as the acronym andthen we were able to work
towards, um, you know, uh, aname that would fit that acronym
, and and Dante was responsiblefor that Dante really wanted us
to have BACPAC.
He was like, yeah, we're goingto wear them around.
So then that became kind of athing, which is, as you know,
(08:36):
grant Lee.
Now every event we have, we'vegot some extra BACPAC that we're
giving to new members andpeople who show up to hold all
their stuff together.
And I think, symbolically Dantesaid this right it's like where
you hold all of your valuables,your knowledge.
And so we felt like, you know,symbolically, the BACPAC
(08:59):
organization was going to holdall the things that were
important to us with regards toaddressing the needs of black
men who had prostate cancer.
So what is the purpose?
Grantley (09:10):
of BACPAC.
What is the purpose of BACPACthat you came?
Dr. Nyame (09:14):
up with.
I'm going to answer this andthen I'm going to step back and
let these two gentlemen talk.
Um, you know, I think thepurpose has changed.
You know, I think the purposehas changed.
(09:37):
Originally, BACPAC for me wasan opportunity to bring black
prostate cancer patientstogether to help us do better
research as an institution hereat the university, but we've
grown a lot since 2020.
We're a much different groupand I think we serve different
purposes now.
Um, but that the mission wassimple when we started.
You know, make black voicespart of the prostate cancer
research.
(09:57):
You know, you know, uh,ecosystem, if you will.
Um, it just was a missing voiceand we would be talking about
disparities in prostate cancerand there wouldn't be a single
black patient around to to evenshare a little bit about their
journey and experience, and soit made a lot of sense to me to
(10:23):
create space to hand power tocommunity.
But more you know, and handingpower to community is really
important, but I think handingpower and giving space to
patients right is one thing tobe black in America, but it's
another thing to be black andhave an illness or a chronic
(10:45):
disease that you're managingthat that mean that's a very
unique experience, um, and Ifelt that BACPAC was going to
allow us to have let people getinto that room, arm them with
the information to have theiropinions, matt, you know, be
heard, uh, and and influence,you know, um, the way that we
(11:09):
did research, because researchis how we make things better, uh
, in my opinion.
So, anyways, that's, that'sBACPAC to me.
I'm really curious to hear whatBACPAC means to Ben and Dante,
cause I think they they've beenthere from the beginning and
they've seen this thing changein a pretty significant way.
Grantley (11:27):
Thank you for that, dr Naomi.
So, before we move into whatBACPAC means to Ben and Dante,
why don't we have you guysintroduce yourselves?
Tell us who you are, what youdo and maybe your role in BACPAC
as well.
So who you are, what you do andmaybe your role in BACPAC as
well.
So who you are, what you do andyour role in BACPAC.
(11:49):
Go ahead, ben.
Ben (11:52):
I am a community activist.
At best it's all a lifetime.
Yes, it's a lifetime.
(12:18):
You know I've done other thingsfor for pay.
As some of you may know thatcommunity activism it's a lot of
difficult work and sometimes,true community activists, they
are bouncing their head againstthe wall.
One of the things that stoodout for me when this originally
(12:43):
started was some of thestatistics that Dr Niani said,
and the biggest one, of course,was that half of the there are
so many deaths here in Americawith prostate cancer and over
half of them are Black cancerand over half of them are black,
but there's only 3% of researchand science that were
(13:09):
associated using black people orblack men.
And that got me to really goingto say that we have got to do
our part.
We can't be dependent uponsomeone else doing something,
and it is that communityactivism that got me riled up
(13:33):
and tried to get other folks inthe community motivated to want
to rally behind this and dosomething, and that first
something, of course, as itcontinues to be, is early
detection.
How do we get more people fromthe community involved in the
(13:54):
early detection?
And it's interesting.
I thought that I knew theanswers to that and then I
realized that you know,sometimes, every now and then,
I'm not the smartest person inthe world Every now and then.
(14:15):
And so I listened and I heardand very enlightened and that's
where I'm at with BACPAC, howit's kind of evolved into what
it is now- Thank you.
Dante (14:34):
Yeah, let's see who I am and what I do.
Those are like two differentthings PhD student University of
Washington, community healtheducator, cancer health equity
researcher and a graduateresearch assistant with BACPAC
at the University of Washington.
I know we had this conversationearlier.
(14:56):
I've been here about, well,I've been with them for about
four years or so.
At this point I'm living herein Seattle, originally from
North Carolina, from Chicago,from where I'm from, we like to
say NC by way of Chicago and Ithink that Ben gets it.
So that's kind of my dad and Ithink my, my.
(15:24):
I know that my identity as ablack or african-american male
is important to me and it's um,interacts with my future work
and my research and so the workwe do at BACPAC it kind of
speaks on that.
Um, I look to like blend umresearch with social justice and
activism and communityorganization and and advocacy,
(15:48):
and so, um, that's that's alittle bit of me.
Um, former semi-pro athlete, Ican claim that uh in soccer, uh,
and um, yeah, that's that'spretty much me in a nutshell
yeah.
Grantley (16:07):
Are you excited for 2026 in Seattle?
Dante (16:09):
oh, yeah, yeah, yeah it's funny you say that.
Yeah, hopefully, I think it'sgonna be way more traffic than
we need, but I'm super excited.
I know my partner, my wife.
She's just like she was rollingher eyes.
She's like we're not going toall these games.
I'm like, all right, I guesswhat you say.
Grantley (16:31):
All right.
Dr. Nyame (16:32):
Yeah.
Grantley (16:34):
I tell people.
You know when I came, I tellpeople all the time I said you
think you know what beingfanatical about sports is
through football and basketball,but you have not seen what
fanatical about sports is untilyou see soccer people show up.
Oh yeah, for a World Cup game,oh yeah, I've seen.
(16:56):
It's a different level offanaticism.
Dante (16:58):
Different level.
I've seen Barcelona play inBarcelona twice and, like I, was
there when Messi scored his400th goal, career goal, wow,
yeah.
So anyway, we got off topic.
But yeah, that's it, we got offtopic.
Dr. Nyame (17:13):
Yeah, we got off topic, we sure.
Dante (17:14):
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 nestedin, coming from an organization
that did that and then beingnested in this organization
under the mentorship of somegreat people who are kind of
helping me along the way.
Grantley (17:34):
So you said you research in health disparities
and one of the things that is inthe purpose of BACPAC on the
website is you know we said thatthrough research we seek to
find out why prostate cancerdisparities exist and use that
knowledge to improve the healthof men in our community.
(17:54):
So just give us a little tasteabout what are some of the
disparities that you are awareof or that you are researching
as a PhD student that might bepertinent to this conversation.
Dante (18:06):
Yeah, so, oh, there's tons.
So we already know about, forexample, the incidents and the
mortality rates.
So you can find information onACS, the American Cancer Society
, or the NCI, National CancerInstitute, about the mortality
rates.
They're anywhere from 2 to 2.4times higher compared to men of
(18:29):
other racial and ethnicbackgrounds.
Also, you're looking at about60 to 70% incidence rate, which
means they're 60 to 70% morelikely to be diagnosed with
aggressive forms of prostatecancer.
So we're talking about black orAfrican-American men or African
descent men that also getprostate cancer more and die
(18:52):
from it more, and those are thetwo important ones.
And then we talk about earlydetection, for example.
So the screening that'savailable to get screened
Prostate cancer is verytreatable, so it's important
that men get screened.
So a lot of my research or worklikes to focus on prevention and
early detection, and so I tryto.
(19:14):
I like one of the things I dolike to talk to men about this,
about what works for them, whatwill get them into getting
screened, and some, there's somedisparities there.
What will get them into gettingscreened, and some, there's
some disparities there.
And, um, if you just listen totheir narratives and their
experiences, you can learn a lot.
So, um, I do do a lot ofqualitative work because I like
to talk, I like to interview ummen.
(19:37):
I think their experiences andstories are very important, and
so you know, for example, Ilearned that the DRE, or the
digital rectal exam, is not verypopular among black men from a
cultural, contextual standpoint.
So if we want them to getscreened, instead of hustling
that DRE and they refer to it asDr Dre, that's what they call
(20:02):
it they don't want that.
So one way to help them to getscreened is to kind of push them
towards other methods ofscreening that are simpler and
more effective.
And then also, we also know thatthere are some differences in
surveillance and follow-up carepost-treatment, for example,
from biopsies or surgery or forradiation, that follow-up care
(20:26):
looks different.
So a lot of the things that I'mreading about and studying
about Yaw and BACPAC and theteam are, you know, researching
those things and they're alsogetting these types of
experiences and stories.
You know from men, frompartnerships, from communities
of men and things like that, andso, when we look at early
detection and screening, youknow from men, from partnerships
, from communities of men andthings like that, and so when we
(20:47):
look at early detection andscreening.
We look at, you know, gettingyour PSA test.
We look at your follow-up careafter you've been diagnosed,
after you've had surgery orradiation treatment, or even,
for example, are providersgiving you all the options or
are they just like any surgery?
Or are they saying, oh, we'regoing to actively do active
(21:08):
surveillance for you, or do youneed this, what?
They're not getting all theiroptions, they're not getting all
the treatment options, they'renot getting all the information
and there's not enoughinformation that's readily
available in the context of theblack African-American men when
it comes to this, especially foraggressive forms compared to
that of, you know, their whitemale counterparts.
(21:31):
So these are some of the thingsthat you know I've come across
and there's tons of literatureout there.
Yeah, put me on a paper like acouple years ago by Emily Recon
I can't forgive me if Ibutchered the name where we
learned that from these majortrials that kind of looked at
PSA testing, and then I alsolearned that as part of that,
(21:53):
since like 1996 or maybe or 1990, I can't remember but most of
these trials that they collecteddata on and how well PSA
testing works, these sampleswere predominantly white men.
So we don't necessarily haveenough information on the
population that's affected mostby this disease burden compared
to white men.
(22:13):
You see what I'm saying.
So all these things arerelevant and they point to like
glaring disparities that existfor this particular disease.
And so, yeah, I kind of andthat's also important to my own
identity as a Black man, as aBlack male researcher.
So not only does like the workat BACPAC check all the boxes
(22:34):
for that, but I also consider ita very worthy cause because
this is a heavy disease burdenfor this certain population.
Grantley (22:42):
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 diagnosedwith aggressive prostate cancer
and even though he is white inthat population, this is an
opportunity for us to reinforcethe messages that you just
(23:03):
brought up about the importancefor black men to get tested and
early screening, because we knowthat the disparities are there.
Dr. Nyame (23:10):
Yeah, I want to say something about that just from
the clinical standpoint.
You know, uh, we have a reallyeffective test for detecting
cancers early in PSA and bloodtests.
You can add that on to anycheckup you know doctor's visit,
where you're getting yourcholesterol.
You know your sugar and otherthings checked.
(23:32):
You know, while your kidneysare working.
We really scrutinize this testand we've almost in some ways
demonized it and there are somepopulations that are very
vulnerable as a result.
So older patients, regardless ofhow fit they are, are more
(23:52):
likely to be told they shouldn'tget tested.
And in the early work we didwith Dante and Ben, we learned
from black men.
We interviewed that many timeswhen they approached their
doctors to say I want to get aPSA test to get screened, they
were being told oh don't, no,don't worry about it.
This, this cancer, is not thatserious and uh, um, for a cancer
(24:15):
that's disproportionatelykilling black men, right, and so
, um, I think the president'sexample is is a powerful one,
because here is the mostpowerful person in the country
with access to everything andwho knows?
I don't want to speculate, butwho knows?
(24:37):
But his age likely plays afactor into whether or not.
He gets this routine, what couldbe a routine test.
I don't like to use examples ofone to make strong arguments.
That's not the right way to goabout it.
I mean, I think if we learnanything from what black men are
(25:01):
experiencing, from what we seein the president, from what
black men are experiencing fromwhat we see in the president, we
definitely need to criticallyreevaluate how we use this test,
how we make it available topeople that should have it and
need it.
And, to be honest, that's beena big part of what BACPAC has
been doing over the last yearand a half is re-envisioning how
(25:22):
to test better and also how toget testing into the hands of
people in a way that won't harmthem but will allow them to
maximize that benefit that youget from catching a cancer early
.
Grantley (25:36):
You know you said you don't like to do it once.
So it's more than one, becausethe same thing happened to me
when I first talked to my GPabout getting my PSA tested.
He tried to talk me out of it.
In fact, he talked me out of itfor a year and asked me to look
into some of the research.
But I knew my family's historyand so I went back and I said I
(26:01):
want to have this test done andI want to start monitoring it
back.
And I said I want to have thistest done and I want to start
monitoring it.
So one of the things that we doon this podcast is we encourage
men to take control of yourhealth.
You know you're paying the bill.
It's your insurance, it's yourhealth.
You're the one who's going tosuffer with it, and sometimes
you have to be a little bit morepersuasive with your doctor to
say yeah.
I understand that you may notthink it was important right now
(26:23):
, but I'd still like to do it.
So then, once we startedtracking it, we saw my length.
Every time I had a PSA test thenumber went up.
From that very first time, allright, and then it started to go
up faster.
So the curve it was justcreeping.
And then the last three testsit just shut up.
But if we weren't tracking it Iwouldn't have known that and we
(26:47):
wouldn't.
It was changing.
Dante (26:49):
I had that done to me.
Yeah, speaking to what you bothtalking on, I requested, when I
asked for a PSA test aboutthree years or so ago.
I was kind of deterred from itas well.
I know the information, though,and what their assessment is
kind of based on, but it's stillan important test.
(27:09):
Like we need a tool to at leasttalk about prevention and to
get screened.
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 likethat.
(27:30):
It just seemed like the wholeconversation was kind of
deterring me from getting it,and so I kind of had to press
for it.
I was like, listen, you'realready drawing, doing a blood
draw.
Just add it on.
I would like it, you know.
So it's kind of taking charge ofyour own health and knowing the
information.
And given that I knew theinformation and I wanted to tell
him man, do you know where Iwork?
Like, give me the test, I knowwhat I'm talking about.
(27:51):
Let me get the test.
You don't know me.
Like, give me the test, I knowwhat I'm doing.
I have other healthcircumstances but I thought it
was important to have.
So you're absolutely right whenyou know men should take you
know, control their own healthand know the information and you
know it's a, it's a good test,especially for you know.
(28:13):
It's important tests for blackmen to know and to get started
early because most times they'renot diagnosed until later ages
and by then it could haveadvanced as far as the stages.
Ben (28:25):
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 thatfolks go through.
(28:49):
And uh, of course, I was goingthrough 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 ofthose that have.
I may have dreaded it, but Ihad the annual DRE and it was
(29:14):
just, I just looked at it assomething that I had to have.
The other thing, and it was atthat point, it was actually a PA
that did it and she said, Ithink you probably need a PSA
test, man.
I was 61.
And, yeah, I was 61.
(29:37):
And so I said, sure, sure, whynot?
I haven't had one in about twoyears?
And she said, yeah, I haven'thad one in about two years.
I did it and sure, it came back.
My number was very elevated andso I went to a urologist and
(30:04):
things just flew from there andabout four months later I made
that decision.
But it is one that, when you'retalking about men and their
health, it is.
You can go into the doctor forone thing, but there are many
(30:24):
other things that you could alsoask that doctor to check and
test, and that's something that,through BACPAC, we're able to
get more people to be aware.
Because I have been living inthis area about two and a half
(30:46):
years a little more than two anda half years now and still just
getting to know my neighbors.
And my neighbor stopped me.
He was riding in the road andthe next thing I know he was
telling me about his prostatecancer treatment and what he was
going through.
And you know, both of us areretired and it's kind of amazing
(31:09):
because we sat there and wetalked.
But I have six people that Italked 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'sprobably because of so many in
(31:30):
this area that are now seeing itand seeing and it is important
for us.
Dante, my point here is this isthat, Dante, when I was doing my
study or a little survey that Iwas doing there in the
(31:52):
community, dante said thatperhaps we need to go to younger
men and at first I thought why?
And then, after he said it acouple of times and very
demonstrably, I was appreciativeof it.
Though I was appreciative of it, though I was appreciative of
(32:13):
it.
It wasn't rude, it was justtrying to make me understand
that the earlier that we getfolks tested, or at least
knowing knowledgeable about it,the better off that we are.
And that's what I'm seeing, isthat, from based upon the
(32:38):
surveys and studies that arecoming out now, that this is
important for us.
It's important for us to takecontrol of ourselves, and the
only way of us taking control ofourselves is being
knowledgeable about it.
And our job at least my job isto go out and spread the word
(33:02):
and make sure that people havethat opportunity to at least
seek the knowledge.
At least seek the knowledge.
Maybe not because I can't tellyou I can't tell someone all
about prostate cancer, becausethat's not me.
What I can tell you is theexperience that I went through,
(33:24):
and I know that everybody'sexperience is going to be a
little different, so proud ofthe fact that I'm a part of
something that is disseminatinginformation constantly, and new
information and currentinformation on what's going on
in the world of the process.
Grantley (33:39):
Thank you.
That is a great transition tothe next part of our
conversation is the work thatBACPAC is doing and hopes to do.
But before we get into that, Iget into that.
I've got one more question justfor clarification and then
we're going to get into the work.
So, um, Dante, Fred HutchCancer Institute work for at ,
(34:03):
is that correct?
I used to.
Dante (34:04):
That's where, yeah yeah, yeah, now you're at the
university.
Yeah, I'm at.
I'm at the now and I'm withBACPAC and Yow at University of
Washington, maryland.
Grantley (34:13):
Right.
So you and Dr Nyame are at theUniversity of Washington.
So the question is is BACPAC apart of the Fred Hubbs Cancer
Institute, Is it part of theUniversity of Washington or is
it a standalone organizationthat is just affiliated with
those organizations because ofwhere we're located, I don't
(34:36):
know who wants to take that calloh man, I figured so.
Dr. Nyame (34:42):
Uh, we?
The truth is we don't know.
I mean, it's nobody reallyunderstands what BACPAC is right
.
If you ask some of the peoplein my department, they kind of
talk about our research team asBACPAC.
But you know and then you know.
Obviously we who are involved inBACPAC know that it is a
separate group of men.
(35:03):
I think the vision and thedream is that it's standalone,
that we have a group of apowerful group of patients that
can go to any researcher in thecountry and say, hey, you're not
doing it right or we can helpyou do it better.
Right now our research teamgets to take advantage of that,
(35:26):
you know, every week.
But I think that's the vision.
So the answer to your questionis I think it's separating.
It started out as a UW entityand very intertwined, but I
think we're starting to have anappropriate separation so that
(35:47):
the group can influence, advise,support independently without
having to feel like they have tobe representative of the UW or
Fred Hutchins' agenda.
Right, there's some freedomthere if it's not a university
entity.
So I think that's important.
Grantley (36:08):
So what made BACPAC different from other prostate
cancer organizations?
Is it the patient focus or isit the research focus?
What would you?
Dr. Nyame (36:21):
say the most obvious is the focus on Black people.
I mean, you know, there's a lotof organizations out there.
Prostate cancer, cancer iscommon y'all.
We talked about this in ourlast podcast but one in eight
men, one in six black men,you're uh are going to be
diagnosed in their lifetime, soit's very common and so, uh,
(36:45):
there's a lot of greatorganizations prostate cancer
foundation zero.
There's even an advocacyawareness education group called
FINN that is started by TomFarrington.
A Black prostate cancersurvivor has done a lot of work.
But I think, you know, our focuson Black people was one
(37:06):
differentiator.
Then the second was a research.
You know, I think we didn'twant to come together with the
purpose of educating or gettingthe word out as our only focus.
We wanted to help do theresearch that would make doctors
and healthcare providerspractice differently, and I want
(37:27):
to.
I got to say this.
I said I would keep my wordsbrief.
That's never true.
Um, this idea that we have tostudy what, what, the why, the
disparities exist as a, aswasted energy, we we've known
that's been reported on for along time, right.
So I think what we do, that'sdifferent is we're studying how
(37:50):
to make those disparities goaway.
That's different, right.
So you know we're doing allthis work, we're having all
these conversations, we'rebuilding towards studies that
will prove that we can do betterand that in doing that, you
know, we're providing theammunition, hopefully, for
(38:11):
others to do the same.
What do I mean by that?
We spent a good chunk of ourWednesday evening meeting
talking about we don't need totest whether or not people need
social support.
To have more than 2% of thepeople be from a rural area or
be Black, latino, you know,indigenous, then you got to
(38:39):
provide the social supportthat'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 alot of energy and time trying to
describe the things that havebeen true, um, in health care in
america for, you know, 50, 60,100 years.
(39:00):
Uh, we're really focused on howwe overcome those things and
the group provides so much richinformation, novel thoughts on
how we approach that that are, Ireally think, going to be game
changers.
In 10, 15 years You'll lookback at the results of the
studies this group is doing andsay, wow, you know right, this
(39:24):
was a turning point in how weapproached cancer research in
the US.
Grantley (39:30):
So we're going to get into the details now, based on
these two questions what is thevirtual research community,
which is something that we talkabout, which I think is unique
to us, how does it work?
And then the second part of itis what, specifically, is some
of the work that BACPAC is doing?
(39:52):
We talk about the research thatis happening and that kind of
stuff, but I want to get intosome of those specifically.
So let's should we start withthe work that BACPAC is doing
and then come back to thevirtual research community, or
is the virtual researchcommunity a good springboard
into the work that we're doing?
Dante (40:12):
Dan to you, I guess we could talk about the work, I
guess, and then the virtualresearch community, because that
sort of advises a lot of thework.
Grantley (40:25):
Okay, okay, so give us an overview of some of the
specific work that BACPAC isdoing right now.
Dante (40:32):
Oh wow, that is a whole separate show.
Grantley (40:37):
Yeah, just give us the topic of.
Dante (40:38):
Maybe the focus yeah, yeah, I might want to give you
that it's.
His catalog is deep, ok, I canAll right, please stop me and
correct me and jump in by anymeans.
So is there's multiple studiesand projects going on, some that
are current, some that areabout to start.
Um, currently there's there'sthe STAR, which is focusing on
(41:02):
secondary treatment afterradical prostatectomy, and black
men.
So, looking at follow-up carefollowing your diagnosis and
your your prostatectomy, I'mcurrently doing interviews with
patients for that as well, andwe're looking at patterns of
like outcomes for secondarytreatment and post-surveillance,
(41:23):
like what are those differencesin your post-treatment
experiences and why do theymatter?
So that's that's one.
Um, you know, jumping at anytime, explain more if you need
to, yeah then um, there's alsothe, the GEMS, again, with these
acronyms um, germline,environmental, social, something
(41:46):
structural GEMS, um, and that'slooking at like determinants of
aggressive and lethal prostatecancer and black men.
And that's an important onebecause it's like building a
cohort or a group of black mento study biological factors of
aggressive prostate cancer andlooking at any like genetic
(42:07):
mutations and forming abiorepository or, like you know,
collecting samples and tissuesamples and things like that to
look at these and to look at howit's affected.
That's a really huge one, Ithink, and I'll let him speak
more of that in a minute.
And then there was EDAB, and Idon't remember the acronym, but
that's like multi-stakeholderengagement.
(42:28):
That's also important, soorganizing and creating equity
around like prostate canceroutcomes, looking at early
detection.
So organizing thesestakeholders and having actually
Black men advise us on likesolutions or to increase early
detections, like how can we doscreening tests, better
strategies around PSA testing.
(42:49):
It's very patient centered andit's very patient engaged, and
so these men come together asadvisors and they kind of
identify any strategies andscreening that are needed or
early detection, and they kindof drive our research agenda.
And then there's COMBAT PC againanother acronym, but that one's
about creating like a resourcetoolkit and it's developed in
(43:11):
like partnership with black menwho are trying to help create
these resources along withproviders.
It gives you information onclinical trials.
It gives you information on PSAtesting, what tools could help
raise awareness, or what toolsor resources you can be armed
with during a clinical encounterto help you with your shared or
informed decision-making whenyou're talking about your health
(43:34):
on the prostate care continuum.
And then so, and there's thebig one and I'll let him speak
to that where we're trying toform like a cancer health equity
hub or center.
That's kind of going toorganize all of this work, where
BACPAC is going to be housed inthis and developing different
interventions and support andalso hosting like cancer center
(43:56):
activities.
So there's going to be communitybenefit grants, there's going
to be uh, you know, aorganization helping push the
work forward.
It's even supporting, liketrain the trainers or citizen
scientists are helping black mento empower their own care, like
training them to do some of thework and the research, and even
(44:18):
, hopefully, an activity wherewe support future people or
students who want to do thatwork 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 bigoverview.
Feel free to jump in Yao, butthose are the ones that come to
(44:41):
mind that are current.
Dr. Nyame (44:42):
Yeah, that's a good summary.
The way we look at it is youcan't affect this big problem.
You know, ben, you know, saidat the beginning that black men
are twice as likely to die fromprostate cancer I think Dante
also alluded to that 50% or somore likely to be diagnosed.
(45:03):
So the burden is huge, right,and we calculated that burden.
You know it's a lot of lifelost due to prostate cancer.
I think we talked about that inour last show.
So when you have a complexproblem like this, the engineer
in me, from way back when when Iwas an engineering student,
(45:26):
feels that you solve complexproblems at multiple points.
Right, you can't, you can'tjust go in the equation and, and
you know, move one particularsmall piece of it and expect the
output to be different.
Right, you gotta approach it atall in in the ways that you can
(45:46):
and all the different pointswhere it needs assistance.
So we did we.
We looked at the problem fromstart to finish, from diagnosis,
through treatment, through toto to death, and said how can we
alter death?
Right, and what we've learnedin our conversations is that
there are all these differentpoints where we might let
(46:08):
patients down.
Right, we might not bescreening enough.
We certainly don't understandwhy black men are getting more
cancer.
We need to figure that one out.
That's been true for a longtime.
Once people are at theirdecision point, we're not
supporting them to get treatedright, and maybe then they get
(46:28):
overwhelmed and they eitherdon't get the right treatment or
they walk away from treatmentwhen they should get it.
And then once people aretreated or they get supported
right, that's a whole notherjourney.
So that's why Dante's heredescribing all these different
projects.
They're kind of supporting,they're holding up and
addressing all those differentpoints.
(46:49):
And you, you know what we'vedone is we've done our
preliminary work right.
We kind of understand how wewant to approach supporting
those different arenas.
That's what the last few yearswas was just getting a lay of
the land or understanding thelandscape.
And I think the next three, fouryears is all going to be about
action, which is going to be fun, right.
(47:10):
It's going to be going totrials and studies and seeing if
the things that we think aregoing to be beneficial actually
help right.
And, to echo the words of Benat a meeting from last year, we
want our studies to helpeverybody right.
To help everybody right.
(47:33):
The goal is to make sure thatif you get in a study that's a
BACPAC study that you come outthe other end bettering yourself
, your health, in some way, um,rather than like really trying
to say okay compared to doingnothing or compared to what you
might have experienced in yourcommunity.
If you're lucky and the computerdraws you to the BACPAC, you
know deluxe package, you'regoing to do real well.
(47:54):
And if you don't get the deluxepackage, well, good luck.
Like we're not, we're notreally interested in that.
So it's been fun and that'shelping us reinvent the way we
think about how we're going tomeasure benefit too, right,
that's what I mean by.
Maybe in 10 to 15 years we mayhave had a really positive
impact on on the field becausewe may help people think about
(48:18):
being more patient and communitycentered and what.
What we think is a meaningfulbenefit Right Right now.
Benefit is just like lesspeople die, right, but that's
not good enough.
Grantley (48:31):
So yeah, and the thing that I think about is, as we
solve these issues, as we get tobetter understand, you know,
why there's disparities in theBlack community, why people are
diagnosed more and moreaggressive and more lethal.
It also benefits the entirepopulation as a whole, right,
(48:57):
the entire scientific, entiremedical community as a whole,
because hopefully, what we arecoming up with are also things
that can be used in other areasof the prostate cancer world.
So, ben, what's your role inany of these studies?
Are you involved in any ofthese studies?
How do you fit in?
Ben (49:37):
Has questions come up or creation of some of the
questions that are being askedin some of the surveys, my
experience and roles within thecommunity and how folks talk to
me.
I once did I was was doing partof the survey and I was sitting
(50:01):
around.
There must have been 10 guys, Ithink, and 10 black men that
were sitting around and 10 blackmen that were sitting around
and you know the the I think Isaid it to you Before we got
started how we're in this group.
None of us had the code switchand because none of us had the
(50:27):
code switch, we got got thoughtsor answers or things that were
said that we probably wouldn'tsay in any other type of group
except for that.
But because we were there andwe were only focused on prostate
(50:48):
cancer and and when you hadreal health, we were having real
talk, and the real talk saysthat some of the things that we
don't think about or we don'ttalk about in polite circles,
(51:13):
and so that's what getsinterjected into my
patient-centered focus withBACPAC.
Grantley (51:25):
So one of the things that we talk about and I think
Dante and Dr Naomi you mentionedit is the role of patient
advisors, and it seems to methat that's also one of the
unique things about BACPAC.
Obviously, I'm not an authorityon all the research going on in
science, but it seemed to melike this topic of having
(51:47):
patient advisors and patientinput to the research is unique
to BACPAC, or maybe semi-uniqueor maybe better, not popular in
the industry.
Is that true or is it?
And also, what do you see thebenefit for having patient
advisors?
Dr. Nyame (52:06):
I mean, every good new idea you have is kind of an
old idea, right.
I think partnering with peopleto do better research has been
around in various forms.
Certainly partnering withcommunity you will hear terms
like community-based orcommunity-partnered research
that exists for community-levelinterventions, right, and so a
(52:30):
good example of that was thepushes to do more colorectal
screening.
You know, getting people to becomfortable thinking about
colonoscopy by training yourbarber to have that conversation
, and people actually started todo that with prostate cancer
screening too, right.
So you're getting your cut andyour barber your well-trained
(52:50):
barber, she's talking about, youknow, the NBA finals.
And then they switch up and say, by the way, you know about
colon cancer and that's beenreally effective, right, and
that was one of thosepartnerships between researchers
and community members.
I do think that what we'redoing is unique for the, the,
(53:13):
the, the thing we're trying toaddress.
We have collaborators and youknow people that we work
alongside here at the universitythat are doing this and other
similar populations.
So actually we are doing thisroses project.
Now BACPAC that's not myacronym, by the way, so I can't
take credit for all of them.
That's Dr Kemi Dulles, but sheworks with Black women around
(53:37):
endometrial cancer, right.
So similar concept.
But what's interesting to me isin medical research.
But what's interesting to me isin medical research, even in
medical care delivery, we don'tdo the thing that business
people do, right, like and I saythis all the time, ben and
Dante have heard this a milliontimes but you know, you don't
(53:58):
open a business in aneighborhood of any type, you
know, coffee stand, t-shirtstore without understanding what
the people want and need, right, you don't just get an
investment to open your doorsand then just start selling
coffee certainly not going toopen that store next to another
coffee store.
You know, you do your researchand you understand where the
(54:19):
need is and how to serve best.
And we, that's not beenrequired in medicine.
You know, we uh, I hate theterm we sit in the ivory tower
and, um, and we, we, wepontificate.
It's my favorite thing to havein the medicine why?
Why do you think black men have, like, have you talked to any
black men recently?
(54:40):
Like you know, they may havesome thoughts, and so that's
been really great for us.
What I also love is atrickle-down effect Some of the
things that we say in our roomwhen some of our collaborators
are there that do different typeof work.
They hear it and then all of asudden, two years later, I'm
(55:03):
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 thinkabout the uh, the power in the
(55:30):
room.
I also love how differenteverybody is in the room, cause
sometimes when people look atthis problem they just say black
man, boom, right, just like onecategory, right.
And you guys know what I'mtalking about.
You know all the differentpersonalities, all the different
walks of life, that all has tobe represented when you think
about the problem.
So yeah, you know, I don't wantto take credit as, like Dante
(55:55):
and me and Jenny and ourresearch team, we're doing
something revolutionary becauseit's it is old, you know this
partnered approach been aroundsince at least the 80s, like in
a formalized academic context,right.
But yeah, I think we're doingit different, right, which is I
think that's what makes it alittle bit more modern,
(56:17):
especially applying it to bigclinical trials, which is really
our goal.
That's going to be different.
Grantley (56:22):
Thank you.
Dante (56:24):
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'reconnected, you know, throughout
the country and it's virtual andum.
They each kind of advise orhave input on various activities
(56:45):
and studies you know for BACPAC, and so it's just a way of
keeping everybody sort of youknow connected and there's
opportunities where they canprovide direct input on, you
know, some of the surveys orsome of the cancer research that
BACPAC is doing.
They also can participate inwebinars and educational content
(57:08):
that's on our website and, yeah, they help us connect with
other community-basedorganizations, other researchers
, and so it's kind of like a bigcollaborative and that's pretty
much what it is, yeah.
Grantley (57:22):
How many people are involved in it?
So far, okay.
Dante (57:24):
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 gota huge response and then he was
concerned that some of themwere bots.
And then he because it was like2200, 2400 people, um, and he
was like, oh man, those are bots, those are.
(57:46):
And he was like I'm going tocheck.
And then I believe that theychecked and there weren't.
So it's a pretty big, prettybig network.
It's up there like between1,500, 2,000 people who are
involved and we keep in touchwith them via.
You know, web internet virtualmeans those type of things.
You know, web internet virtualmeans those type of things.
So it's a pretty big networkthat's associated with BACPAC
(58:08):
that helps drive our work andour research agenda and just to
stay connected.
Dr. Nyame (58:13):
Yeah, it's a big group 20, over 2,500 people,
over 1,500 prostate cancersurvivors.
So it's a big group, Big group.
And you know I still worry thatthe people are not, that we have
(58:33):
some bots and not everyone isreal.
It's an internet-based group,right, but I'll tell you, dante
is interviewing people from thisgroup.
So, you know, what we wanted todo was have an audience of
people that were willing to lendtheir voices on their
experience, to kind ofsupplement what we have in our
smaller group.
You know the 20 men or so thatyou know 25 men that come to
(58:56):
Seattle and work with us andjump on Zooms, and so we put out
a request to do some interviewsof people that were not part of
our advisory team, that were inthe virtual research community.
And, according to Jenny, eventhough AI is really good, dante
has talked to some real humanbeings from what we know.
(59:17):
So it's really exciting thatwe've had an opportunity to
expand BACPAC to include, youknow, this virtual component.
Grantley (59:27):
Yeah, I think that's a really exciting part of what we
do and I forgot to say thisearlier.
But just for full disclosure, Iam one of the patient advisors
on the GEMS study, just to putthat out there.
So I'm not just doing thisinterview as an interviewer, I'm
doing this interview as aparticipant and also a patient
(59:48):
survivor.
So just to make that clear,just our guess.
Some of my thoughts may bebiased by my experience and
these guys are good guys to hangout with.
We have a good time togetherwhenever we get together Very
good time Pretty fun.
Yeah, we have a good timetogether whenever we get
together Very good time, it'spretty fun.
Yeah, I was surprised when Iactually got the invitation from
(01:00:09):
you to join the GEMS group.
I was like, okay, but I'velearned so much since I've
joined that group.
The sessions we have, thelectures and the training to be
a patient researcher has beeneye-opening and actually
mind-blowing at times when Ithink about it.
(01:00:30):
So what are some of the eventsthat BACPAC supports and what
events do we have coming up thatmaybe our listeners and our
viewers could also get involvedin?
Dr. Nyame (01:00:45):
Yeah, so our group, the gentlemen on this, uh, on
this podcast today, plus about25 more, maybe 30, get together
once a year to just do the work.
Right Cause, because of the waywe we formed and where
everybody's all over the countryI guess we haven't said this,
but we got um brothers coming infrom what?
(01:01:06):
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, youknow it's good to work in person
at least once a year, right,and we're actually there's a
(01:01:29):
call out for us to maybe even doit more than once a year, maybe
twice.
So that is a but that's aworking meeting for BACPAC and
that's kind of internal business.
On October 4th we're going tohave our symposium that's open
to the public.
October 4th we're going to haveour symposium that's open to
the public.
Uh, we opened the cancer centerdoors.
Our, everyone from our team, uh,is out there and that event
(01:01:52):
really is to do what has becomesomething that is a request of
the BACPAC advisors.
Right, you guys say we got toget the word out.
Pretty much every time we meet,we have to get the word out
about prostate cancer, aboutscreening and so we really want,
and about the research we'redoing, like what we're learning.
So we want to use the symposiumto do that.
(01:02:14):
So we got a date.
We're partnering this year withZero, a big advocacy
organization.
We got a really incredibleslate lined up.
You're going to get to hearfrom everybody in the group in
some capacity.
So we're looking forward tobuilding community and educating
(01:02:35):
at that event.
Grantley (01:02:37):
And that's going to be at the Fred Hutchinson Cancer
Institute.
Dr. Nyame (01:02:40):
Yeah, it'll be on the Fred Hutchinson Cancer
Institute, but it's a hybridevent, so when we go live, maybe
we can share the link and theQR code to be posted along with
this episode.
But you can sign up.
For those that are not inSeattle or can't make it in
person, there will be an optionto hop on the Zoom and at least
participate, as you can.
Grantley (01:03:02):
Is it limited to just the United States or people in
other countries can register?
Dr. Nyame (01:03:06):
We had one person from a internet, one
international participant, lastyear, so we we have capacity to
have another timezone s mightmake it tricky.
Uh, I know, every time I callfamily in Ghana they're like
seven, seven hours ahead.
So uh it might be somelimitations there, um, but yeah,
all are welcome.
Grantley (01:03:27):
Yeah, so we talk about the research, we talk about the
patient advisors, we talk aboutthe virtual research group, we
talk about the symposium that'scoming up in October.
Is there any other way thatpeople can get involved with
BACPAC?
I mean, we're not a membershiporganization, yeah, we're not a
member you have to use, andstuff like that.
How could people get involvedwith BACPAC?
I mean, yeah, we're not amembership, yeah, we're not a
member you have to use, andstuff like that.
(01:03:48):
Well, how could people getinvolved.
Dr. Nyame (01:03:50):
so I think, uh, the two ways to get involved.
Number one if you want to haveyour advice, um, your
experiences, your knowledge, bepart of the prostate cancer
research apparatus.
If you will ecosystem, I saidearlier I need to come up with a
simpler word, but you can signup for the virtual research
(01:04:12):
community.
We send surveys, often paidsurveys, where your voice can be
heard and you can share yourexperience, 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 paidinterviews or you get an
(01:04:32):
opportunity to share yourexperience and we demonstrate
how much we value your time inthat endeavor by providing a
small fee for that consultantfee, if you will.
So the virtual researchcommunity is a great way to get
involved.
Number two if you're a survivorand you want to be on one of
(01:04:52):
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 foryou.
Poor Ben had to say felt likehe had to say yes to all this
work, and now we get to spreadit around.
I had to say felt like he hadto say yes to all this work, and
now we get to spread.
I had the email, Ben.
Now we get to spread it around.
Grantley So, , you said I'msurprised you asked, but you,
(01:05:13):
you know, at the symposiumyou're like, if there's a
project, I'm willing toparticipate, and there's always
a project, so uh, there's, that.
There's good way for people tobecome advisors.
And then the third, and this isa plug and hopefully you can
share the link you know theBACPAC Team.
We're doing a walk, run, bikeride event here in Seattle as
(01:05:34):
part of a Obliteriteride.
That's going to call attentionto our mission.
It's going to help us raisesome money and a great way to be
in community, to be active andto demonstrate the power of
being a cancer survivor orcancer researcher.
I'm really looking forward togetting the group together for
that event and to show out, asthey say.
(01:05:56):
I think we'll have some BACPACswag for the team and we'll be
loud and proud as we advocatefor better prostate cancer care
for black men.
So be on the lookout for thattoo.
Grantley (01:06:10):
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 candonate to that.
Three of us already signed upfor that and, um, I already had
(01:06:30):
my injury, so I don't want to doreally well.
My chain came off my bicyclethe other day going up here.
Oh, sorry to hear that.
My foot landed on thederailleur.
It's not good, but I'm doinggood.
I'm looking forward to that.
(01:06:51):
That's going to be fun.
So, as we wrap it up here, ourtime is coming to a close.
As we wrap it up here, I reallywant to thank you, gentlemen,
for being here, but is there anyclosing comments that you would
want to share with ourlisteners or any words of
encouragement?
Let's start with you, ben, andthen we go to Dante and then we
(01:07:12):
have Dr.
Nyame close it out.
Ben (01:07:14):
For me, it's always.
I'm grateful to be a part ofthe community, part of the
community.
It is many days, for personalreasons or personal health
reasons, that the folks in thiscommunity have given me that to
(01:07:43):
move forward and not be soself-centered, so to speak.
I'm still.
I still have this overinflatedego and I wear hats to try and
keep it in check.
The reality is that it is aBACPAC at this point that, even
(01:08:11):
from the virtual standpoint,that has given me greater hope
(01:08:32):
for all of the things that Iwanted to see happen in my
lifetime.
From the health community, Iknow that prostate cancer is
just one thing, but it's onemajor thing, especially for
African-American males, and I'mjust glad to be a part of.
Dante (01:08:49):
Yeah, I'm echoing some of the sentiments as well.
I'm also uh glad to be a be apart of it and uh thank.
Also thank you to to you,grantley, for having us here
today, and uh also thanks to toYao and Ben.
Um, ben was like my number oneguy.
I had a lot of partners, but Ireached out to Ben for
(01:09:11):
everything, and so I'm gratefulfor that and hopefully I would
say hopefully we have a chanceto connect with you know Black
men out there and that theyreach out and be a part of this,
Because I really believe thatyour voice matters and your
experience matters and you canreally help us push the work
forward.
(01:09:32):
I think that this is a trulygood organization.
It's really good work and I'mproud and excited to be a part
of it.
I think it's a part of my ownjourney and I think it's part of
my own journey and I think it'sgreat.
I have the opportunity to workwith tons of patients, speak to
a ton of men and learn a lotfrom them.
So, for those who are watching,listening, hopefully you can be
(01:09:55):
a part of that experience andwe hope that we have the
opportunity to connect with youand kind of address this issue,
because prostate cancer amongBlack and African-American men
is is is a heavy disease burdenand um, we want to make sure we
have the chance to address it.
So that's all and thanks forhaving uh having us on today.
Dr. Nyame (01:10:16):
I mean I I echo what what Ben and um and Dante have
said this um, this experiencehas been an incredible one.
It's been a been a fun ride.
Uh, one of the things that Ilove most about this is the
community.
We have real friendships, right, um, you know, the first time
(01:10:36):
met ben, you put your hand outnice to meet you, sir.
You know it's a little stifferhandshake.
You're still feeling each otherout.
You're're grateful for thepartnership, but it's not the
same as when I see Ben now and Igive him a big hug and you know
it's just.
There's a warmth there thatreally exists.
There's a respect there that'sreally hard to put into words.
(01:11:01):
And so you know I want thatcommunity to grow.
You know, selfishly, I wantthat.
(01:11:28):
I want others to have thatexperience.
You know other survivors whowant to make a difference, to
know that there is a space wherewe can help you change what you
don't like about the way thatthat prostate cancer care is
being given or approached.
And so I think that's my finalwords.
If you're sitting at home andyou have a long list of the
things that we're doing wrong inhealth care with regards to
prostate cancer, there's a placefor you to share that list and
try to make things better sharethat list and try to make things
better.
Grantley (01:11:46):
And our website is BACPAC B-A-C-P-A-C-network.
org and you can see the virtualcommunity there, some of the
work that's being done.
You can also sign up, as wesaid before, if you want your
voice to be heard, if you wantto communicate with us, you can
see it through BACPACnetwork.
org .
(01:12:07):
Thank you, gentlemen, for yourtime, Thank you for here today.
It was a great discussion and Iappreciate you and thank you
for giving us the hour hour,your time to share with our
audience.
Yeah, absolutely.
Write us at real health blackmen at gmailcom
(01:12:29):
realhealthblackmen at gmailcomTo support this podcast.
Go to buymeacoffee.
com forward slashrealhealthblackmen, buymeacoffee
.
com Real Health Black Men and tobecome a corporate sponsor,
(01:12:50):
send us an email.
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