September 23, 2024 • 30 mins
Clinical trials are an essential part of the process that brings new drug therapies and cures to market, but Brown and Black people are severely underrepresented in this life-saving research.
The problem dates back to misconduct in trials like Tuskegee and a subsequent lack of inclusion in later studies. Unfortunately, a host of stigmas and stereotypes have since become barriers to accessing quality healthcare. We must address the inherent mistrust and break down those barriers now, before it’s too late.
In this episode, I talk with two dawgs from the International Myeloma Foundation: Dr. Joseph Mikhael, and President and CEO, Yelak Biru. Both are working tirelessly to educate and engage Brown and Black communities and bring essential diversity to clinical trials. It’s a heavy lift—it takes time to build trust—but the IMF is focused on the tools and connections that will make a difference.
Join us as we delve into the critical role of clinical trials, specifically in underserved communities, and explore the factors driving reluctance to participate, along with actionable steps to overcome them. Our guests share personal insights and professional expertise on how to build trust and encourage greater participation.
This episode is a must-listen for anyone interested in understanding the complexities and solutions surrounding clinical trials and healthcare disparities in underserved communities.
Listen in and learn how you can help pave the way for a healthier future.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
Yes, yes, yes. Welcome to another episode of Hip Hope Hooray,
Black Men Talking Health.
I am your emcee for this evening. I am Oya Gilbert.
And we got a really, really, really dope episode for you today.
In the building, I have some IMFs, which is the International Myeloma Foundation's top dogs.
(00:23):
I mean, like top dogs. and we are
going to be discussing today clinical trials specifically in
the black and brown community and a lot of the stigmas and stereotypes and
these cats are going to debunk some of those things and give you some real real
information and so to my right is dr joseph mckayle i call him dr j you can
(00:45):
check his bio google him and all that good stuff he got it's too long and on my My left is Jalak Baru.
He is the president and CEO of the International Myeloma Foundation.
Gentlemen, welcome to the show. Thank you for having us.
Thanks so much to be with you. So look, we're going to dive right straight into
it because, you know, this is how we do it on my listeners.
So I'm going to ask you the first question and either one of you can take it.
(01:09):
So typically, you know, in the black community, you have to Stiggy and all those
different things that have affected the mindsets of, you know,
the black and brown community. and a number of other things of mistrust in the health care system.
But specifically, we're talking about clinical trials. So what historical factors
have contributed to the reluctance of black and brown communities to participate in clinical trials?
(01:34):
And how can we work to overcome those things?
Well, I think first, I mean, trying to define part of the problem, right?
And you've already outlined some of it, that first of all, this goes back a long way.
Right. which is part of the challenge why we can't fix it overnight,
although I'm very excited about ways in which, as we're going to talk,
I'm sure in a few minutes, how we can address that.
(01:54):
But historically, it's really been the product of multiple things.
I would summarize it quickly by saying, one, there has been a lot of,
sadly true, but there has been a lot of misconduct in clinical trials.
You mentioned Tuskegee by name, and we could mention several others,
Where in particular disadvantaged populations, very often the black and brown
(02:17):
communities and often others as well, were not treated the way we now would
treat people as we conduct clinical research.
These individuals were not given the right therapy or not followed up correctly
or were actually worse than that, given bad therapies and not given ways to
overcome the side effects from it or were not appropriately followed up.
(02:38):
And so that built a really sad history, obviously, of the way research was conducted.
Add to that, we know that health in general is such an important part of our life.
And the health care system, the way it was built, the way it was designed,
and the way it's been implemented very often disadvantages those that are socioeconomically less involved,
(03:08):
that has historically affected black and brown communities.
And so those social determinants of health have been massive in the area where
people live, their access to groceries or food in general, childcare,
opportunities for employment,
the safety of their water, the safety of crime.
(03:28):
All of those things have had a compounding effect to that history of misconduct
within clinical trials. And then very often the lack of recognition of these
things in the general community.
That's sort of dispensing with, well, you know, this almost view of lesser societies.
It's tragic in our history, which I think, thankfully, over the last several
(03:52):
years is starting to turn the corner.
So that's been historically where we've been. But I know that Yellick speaks
very well to how modern day still has significant elements of these challenges.
And Yalek, I'm always interested in hearing from your side.
Absolutely, Dr. Joe. Oh, yeah, again, thanks for having us.
Yeah, yeah, yeah. I'm just trying to figure out how you just took over my show. I'm going to go.
(04:14):
Yalek, go ahead. No, go ahead. I'm sorry.
In addition to being and serving as president and CEO, I'm also a multiple myeloma patient.
And I have been a patient for the last 28 years. And I have participated in clinical trials.
And it is important to know that clinical trials are a prerequisite for a new
(04:36):
drug to be approved in the US by the US Food and Drug Administration.
While I respect and understand the historical implications of what happened.
We really need to respect that. We really need to also understand where we are
and really truly be energized by the future.
So where we are today is that because of not just the history but the,
(05:02):
differences in socio-economic situation of not just blacks but also the environment
in which they live, they don't have access to clinical trials.
That is number one. Number two is because of the preconceived idea that blacks
know about the history of abuse in the clinical trial system,
(05:28):
they don't get asked to participate in the clinical trials.
So that creates the situation today, not just the disadvantages blacks had in the past.
So, you know, I would completely agree with you. You know, as a lot of people
know my story, I'm also a multiple myeloma patient.
And one of the things that you said before in a previous interview is about passing the baton.
(05:53):
And so one of the things I would like to stress as far as to the black and brown
community is that even though these stereos and stigmas still exist to this day,
You have to remember that I remember that somebody before me,
a black and brown person, decided to do a clinical trial, decided to.
(06:15):
And obviously, back then, that that stigma and stereotype was even more profound.
But they decided to do it and which has me alive and you alive.
And so I think that's a very important piece to make sure that we point out to to to the listeners.
So one of the other things is, is, you know, how can health care professionals,
because that's another piece component to it, how can health care professionals and researchers.
(06:40):
Build trust with black and brown communities to encourage a greater participation in clinical trials?
Well, I mean, there's a lot of ways to answer that. I mean, it starts with,
I mean, how do you build trust anywhere with anything, right?
You've got to be genuine and you got to take time, right?
I can't build trust with you. I mean, you and I met, we were brothers,
you know, instantly, but trust typically takes time, right?
(07:04):
And so, and so what I try to instruct my colleagues in this is it's not just
about you come to me when you're sick and I'll provide something.
It's that kind of community engagement, that investment of time and energy and
of genuine compassion in the community that you care.
You know, if someone has developed that kind of relationship with their healthcare
(07:25):
practitioner, we know, especially in oncology, it improves their outcomes.
So your relationship with your doctor is not just a warm, touchy-feely,
hold hands, sing kumbaya kind of moment. This actually affects your outcome.
And so for us, we have a lot of work to do. Our standards now,
thankfully, are very high.
So in light of the terrible misconduct of the past, we have regulations and
(07:46):
rules and so on, but it's on us to build that trust.
I also think it's on us to provide the right kind of education.
I mean, you say the word clinical trial. If I walked out in the street today
and asked people the microphone about clinical trial, you're going to get a
hundred different answers.
And you said it correctly, that the people have gone on before have given you
benefit, but it's also really important to know that the vast majority of our
(08:08):
patients who we would put on clinical trial is for their benefit.
It's not like I'm donating my body to science.
No, no, you are getting a chance to get a drug earlier, to get a new therapy, to give some.
I have seen hundreds of lives of patients over my career that have been extended
because of the clinical trial they were on, not just because we stand on the
(08:32):
shoulders of giants, as we often say, which is true, but their own benefits.
So really, I think it's a combination of the right education and that compassion
and time that we need to put in for us to start to rebuild that trust,
recognizing it's going to take time.
I have to be conscious of the fact that that person doesn't trust.
And I don't want to do what Yellick said and just pretend, oh,
(08:53):
well, that person is from a historically disadvantaged group.
I won't even talk to them about trials. Sadly, we've seen that.
So it's on us, too, to start saying, no, I should be thinking about a clinical
trial in all of my patients, independent of their background.
So before I let you chime in and elaborate on that, one of the things is that
that's different back in the past.
(09:14):
So, you know, hospitals and things of that nature, health care professionals,
unfortunately, they got KPIs just like any other place because I've seen that happen.
And so, you know, they can only see a patient for 15, 20 minutes and it's on
to the next thing. And it's unfortunate, and I think that's a sad.
Practice that we have, because especially when you're talking about cancer,
(09:35):
people's lives are on the line. So that's one thing.
And then the other thing is when I think about my age in that era,
you know, you typically had the same doctor from almost like childhood all the
way to as a grown person. And that's what's so different now.
And I just want to point that out. That's another aspect that I think that creates
(09:56):
a disparity and an issue along with that.
Could you, you know, elaborate with that? Sure. You guys brought really good points.
What I will add is today for a clinical trial to be designed and initiated and
for patients to participate,
(10:16):
there are a lot of regulatory guardrails that exist that prevent from the injustice
that happened in the past from happening again.
So I think blacks and all of us really need to understand that there are those guardrails.
The second one is clinical trials are designed by humans.
(10:36):
There are doctors, pharmaceutical companies, clinicians that design these clinical trials.
Patients should and can be invited to help design those clinical trials.
And if patients that look like you and me are part of the design process,
the trial is going to be designed, and, in my opinion, have better trust from
(11:00):
those that we are going to invite to be able to participate in those clinical trials.
You hit a really dope point because my slogan is we should be involved from
conception to commercialization when it comes to that.
And another thing about clinical trials that I don't think a lot of people know
is that you are having some of the best medical professionals treating you when
(11:25):
you're doing a clinical trial.
It's not like the normal doctor that you might see in an area that might not
have the specialty in it.
But when you're on a clinical trial, you have high level specialty folks from
the nurses to, you know, to the specialists as well.
I'm going to jump into number three. And this is this is this is a really good one. So what steps?
(11:47):
Obviously, we can talk about all the problems, but what steps can be taken to
ensure that clinical trials are conducted ethnically? and with the best interests
of their communities in mind.
Well, I think part of it is what Jellic shared with us, is that there are some
guardrails and standards that are extremely high that have been put in and unfortunately
(12:08):
had to be put in because of the misconduct in the past.
But it's not just the rules and regulations, you know, it is now I think of
it, we're taking it a further step where the rules and regulations show you,
you know, the sort of the minimum standard and that careful guardrail.
But as we've already been intimating, I think it requires more than that.
(12:29):
It requires the engagement of all parties involved to appreciate the importance
and value of diversity in clinical trials and how they're conducted.
So what does that look like? That means bringing together the FDA,
the pharmaceutical companies, the medical community, the lay community,
and the patient community.
And everyone has a role together. So engaging, like you indicated,
(12:53):
Oya, that it's so important that we have patient engagement from the very start.
But also in the understanding of what's happening here. So what is preventing?
What are those barriers?
We've talked about the historical trust and so on, but sometimes it's very,
very pragmatic. Why do we keep doing clinical trials just in certain states?
You know, up to 80% of African-American patients live in 18 states in this country.
(13:16):
And often those are the states not represented in a lot of these clinical trials,
Alabama, Louisiana, other places like that.
So sometimes it's sheer geography, but it's also recognizing,
like you said, the patient engagement and the materials that are given to patients.
Why do we always have a picture of a white person on the wall?
You know, there's got to be so people and the teams that we have,
(13:38):
right, that we reflect that diversity.
When someone comes in, it doesn't necessarily mean that everyone on the team
has to be of a diverse background, but when someone comes in and do a clinic
and they see at least someone who looks a little bit like themselves,
there's a comfort that comes with that. It's a recognition that we're all in this together.
I agree. So I think there are multiple ways of doing so in the partnership with
(13:59):
everybody, in the engagement of each one of those stakeholders,
and then of us as doctors.
You know, I participated recently in the DRIVE initiative. This is Dr.
Ramo Barahay from Indianapolis, who is really passionate about this issue and
has come up with, I won't go through it in detail, but sort of a five-step process
(14:19):
to foster and ensure that we have appropriate diversity in clinical trials.
Like in myeloma, 20% of people in this country with myeloma are African-American.
And most clinical trials have 3% to 5% representation. And that's crazy.
That's crazy, right? Yeah, that's crazy. And so one of the things that he indicates,
for example, is the patient engagement that we've discussed,
but also having a diversity officer for all these trials, who oversees it,
(14:44):
not as someone who's trying to prevent the trial, but to support and say,
how are we doing in this trial? What are we doing to reach out to this community?
How are we trying to find ways to ensure? And we've done this in some of our
trials recently, myeloma, one of the largest trials we've just done here in
the United States, the determination trial, had 19% representation.
(15:04):
And that's because it was a conscious effort to say, let's bring this trial
to different communities.
Let's have a plan and a strategy to ensure that we make this happen.
So that's a tip of the iceberg. I mean, you know, I could bore you all day long with answers to that.
But to me, that's very important because where there's a will,
there's a way. And that will has to have a way to be fulfilled.
And I think we're starting to see that and we can even do more.
(15:28):
And that's why I think the IMF has to be a big part of this,
because the IMF is one of the very few organizations that can actually bring
all those groups together in a meaningful way.
It's hard for the pharmaceutical company to host this. It's hard for the FDA
to host this. It's hard for patients themselves, if you will,
to host this or the lay community.
But we want to be the convener to facilitate and make that happen.
(15:48):
That's dope. You want to elaborate? I agree with everything.
What I would say is also it is not versus or end. It is end.
It's not blacks versus whites. It is not patients as patients versus the doctor
or the doctor and the patients against the pharmaceutical companies.
(16:11):
We have to all understand the benefit of elevating participation in clinical
trial in general and ensure that we all benefit from that, that's one.
The second point is which Dr.
Joe indicated last, which is others, as you mentioned, may have KPIs.
(16:32):
The number of people they see, then where they have to initiate a clinical trial,
but a nonprofit organization like the IMF, which is a very patient-centered organization,
organization we advocate for we educate
on behalf of the patients right you're not
governed by those rules exactly we do have
(16:53):
our own kpis right the patient is in my opinion the kpi and we need to make
sure that we have a seat and we are seen as a convener of these various entities
and ensure that we are elevating participation in all man i couldn't agree with
you i couldn't agree with you know,
one of the things is, to both of what you said is, first and foremost, you gotta get educated.
(17:17):
You know, I felt like in order to not let things of the past happen,
you need to know what's going on, so you need to be educated.
We can also have a seat at the table, but if you have to have a seat at the
table and you're not educated and not know what's going on, then there's really
no business for you being there.
But one of the things I always try to keep it real is that.
(17:37):
In our community, especially black men, I mean, I don't want to,
I can't have this conversation with you without saying that,
you know, some of this stuff is self-inflicted.
You know, I have friends that just won't even go to the doctors,
let alone talk about a test.
And, you know, I asked them why. And one of them said, hey, I don't want to know.
And that's not like an anomaly as a response.
(18:01):
So I really want to make sure it's clear to to the listeners is that,
you know, we have to sometimes get out of our own way, especially understanding
that it is 2024, not 1924.
And so it's important for me to express that, that especially as black men,
we got to go to the doctor, stop using the ER as our PCP and do things in the
(18:24):
right way and kind of get out of that old stinking thinking.
Can I comment on that for a second? I totally agree with you.
Right. You know, and lots of different ways.
I mean, I was recently we did a program in Indiana in barbershops,
right, to reach out to men.
And one of the gentlemen who had founded that organization explained to me that
one one of his black friends said to him, you know, my wife goes to the doctor
(18:49):
all the time and she and I live in the same house and eat the same food. So if she's good, I must.
And he wasn't saying it. I mean, he was serious, but he was serious.
And so there are, so, so one of the ways I think to help break that barrier
down a little bit is to meet people where they're at and, and,
(19:09):
and have them endeared to medical information that may not just be in the doctor's office.
So that's why we do programs in barbershops, in churches, in fraternities,
in sororities, and in different places where we can say, and this is what the
IMF is doing through our empower program,
you know, M stands for myeloma power, where we're trying to reach people where
(19:29):
they're at to explain the basics of health.
In particular, obviously, we're interested in having them understand what may
happen in myeloma because it so adversely affects the African-American community.
And then maybe lastly, if I can add this one thing specific to clinical trials.
You know i hope i'm a pretty good communicator and now dr joe
loves loves to share things with people but it's a
(19:51):
lot different it's difficult to really understand what you're saying right now
but when it comes from patient to patient like you doing exactly what you're
doing right now you know we've created a program called the clinical trial mentorship
program where we are asking patients from historically underrepresented communities
african-american community latino-american community,
(20:14):
Native American community, who have been on a clinical trial to share their story.
Sometimes the story's good. Sometimes the story's challenging.
But so that when someone hears it peer to peer, so as we're developing this
program now, we're going to be able to use, whether it's through social media,
our in-person meetings, our community engagement, which is such an important part of health.
(20:36):
I really believe in that notion of going out to the community,
not just waiting for them to get sick and come to us.
I think this program is going to help us with that.
So when we did a program in Detroit and there was an individual there who was
sharing his experience of being in clinical trial, I'll tell you,
everybody in the room was listening.
It's one thing for Dr. Joe to say it. It's another thing for patient Oya to say it.
(20:59):
And we think that's going to be a big part of what's coming in the future because
that will even engender that trust that much more when people hear it from someone
within their community,
even, you know, working with you, working with Ice-T as we have,
and others who want to be spokespeople so that people hear from within their
own community the benefits of clinical trials.
(21:20):
Man, I agree with you. It's like, you know, it's just a different way to deliver
the message. And one of the things you both were saying is we got to be in the trenches.
We got to get, you know, grassroots, the trenches, the block,
that's where we need to be to meet people where they're at so we can understand
what truly is their mistrust issue and be able to build that trust.
So I'm going to go to my last question. So how can we increase awareness and education?
(21:44):
I know you have touched on a lot of it already within the black and brown communities
about the importance of clinical trials and the potential benefits of participating in medical research.
The number one information I think your listeners should take is what I said initially.
In order for you and I to have the next best treatment, someone has to go through
(22:09):
a clinical trial, right?
So clinical trials are a precursor for a drug being available.
Number two is that we have to understand the history and the stories that have
happened over the last hundred years, if you would.
But we also really need to ensure that we are not going to repeat that story
(22:31):
as we move forward into the future.
So for us, as patients, as a doctor, as clinicians somewhere else,
and whoever your listeners may be, really need to ensure.
We make commitment on behalf of our future self in order to make sure that we
(22:53):
are going to participate in the clinical trial so we can help bring the drugs
that are important for patients.
But it's also important what Dr. Joe said, that clinical trials is not about just paying it forward.
It really is us benefiting from the drugs of the future today.
Day. We are not going to be experimented. We are not going to be guinea pigs.
(23:16):
We are not necessarily always be able to get a placebo.
We are going to get what's called the standard of care, whatever that standard of care may be.
So I think I will let Dr. Joe explain the Empower program and what we are doing under that umbrella.
But as a patient, we really need to dedicate ourselves to ourselves.
(23:38):
I completely agree. You know, one of the things about the clinical trial,
and you said it's about the person at the time frame,
is that, you know, without having, you know, when we talk about the clinical
trial and the importance of it, you know, we're talking on that level of precision medicine,
you know, and if you have a situation where, you know, the black and brown community
(24:02):
and you say, well, these drugs aren't for us.
We'll never get to that space if you keep just using that same old,
you know, playbook, as they eloquently say.
If you got 30,000 people participating and only, you know, 1,000 or 5,000 are
African-American, then yeah, it's going to probably be more tailored to that situation.
(24:24):
But that's not the, you know, the other folks' fault.
And so we do have to participate in precision medicine. And so I'll let you follow up with that.
Yeah, no, I mean, beautifully described, of course, by Yale.
I think logistically, this means, you know, public education,
breaking the myths and the stigma.
I mean, as I said before, you say the word clinical trial means a lot of things to different people.
(24:46):
People think that they become a guinea pig and they get put in this maze and
the door behind them immediately locks and they don't know where they are.
I mean, this is part of routine medical care. We've been working very hard in
something called DCTs or decentralized clinical trials where it's not just at
the big, big academic centers,
but that we can provide this kind of care out in the community because that's where people live.
(25:08):
That's what we need to provide to them. We need tools for people to find clinical trials.
Just today, we launched at the IMF, this Spark Cures collaboration where on our website.
Anybody can go on and do a very sophisticated search, even anonymously if they
want, of how to find a clinical trial
on multiple myeloma across the whole country or even in their region.
(25:32):
So we have to bring it to the people and not make it that they've got to go
and wait in a big line or make an appointment at a big academic center in three
months from now when it's going to be around.
And so I think that logistical democratization of clinical trials,
if I can use that word. I'm not running for office, brother.
Hold on, wait a minute. Before you do that, because my listeners might break
(25:54):
that word down in layman's terms.
What it means is bring it to the people. All right, there you go. There you go.
Bring clinical trials to people instead of making people go to some very challenging
place to find a clinical trial.
And we want to bring it to the people. And by having people share their experience
through our Empower program as we go community to community across the country,
(26:16):
having people understand the disparity in myeloma, the ways in which we can
overcome it, we want to give that general education as well about what clinical trials are.
That's part of rebuilding that trust. So that someone says, okay,
I'm comfortable enough even just to go to my family doc to get my routine blood
work or get my routine exam.
And then if they come to talk to me someday about a clinical trial,
(26:36):
it's not that far off of a step because I've already reestablished that trust. Man, that's fly.
So go ahead, go ahead. I'll add one final item in that discussion.
Not all Blacks are Blacks, meaning the problem that I have in the Dallas-Fort
(26:57):
Worth area is very different than the problem that I will have in the Detroit
area. Understood. Gotcha.
And so the solution needs to also be tailor-made for that particular community
in which we are trying to solve.
So while the problem of not being able to participate in a clinical trial is
(27:19):
common or unique, not unique,
the solution may need to be tweaked a little bit based on where you live or where I live.
Man, listen, that's an excellent, excellent point.
So gentlemen, listen, you know, I could keep you all here for the rest of the
night and we could do this all night.
But we're going to close. So I typically on my show.
(27:41):
I know I'm great though. Y'all off-guard typically on my show I close with with
one last question and so I'm gonna give it to you. Dr.
Joe first So in your normal everyday life outside of dr.
Joe in When you want to get amped up geeked up pumped up maybe running or something,
Give me a hip-hop song that you listen to.
(28:04):
Oh boy Boy, that's going to be tricky, man.
I'd listen to anything you would sing.
I got to lead with that. I'm sucking up to the chair here, but I got to tell
you, you'd laugh if you knew what I listen to when I run.
So I actually, I listen to a recording of the Bible by a guy who reads it out to me.
(28:30):
So I figure that's how I read the Bible. Oh, man, I'm not going to laugh at
that. No, that's not exactly hip-hop, but it gets me thinking while I'm running.
Okay. And maybe it distracts me a little bit from the hills and the different
things that I seem to run every day.
So if you go on your past, just what's a hip-hop song that you like in general?
Oh, man, you're going to kill me now. I don't want to, I told you, anything you sing, man.
(28:55):
All right, I'm going to go with that one. Uh-oh, he Googling.
I'm going to go look at what is hip-hop.
Thank you for having us listen i thank
you guys for joining me uh we're here at the uh international myeloma foundation
support group support group summit annual it's 20 what is the 25th 25th anniversary
(29:20):
and so like i said as i end all my podcasts peace out and keep 5-0 guessing.
Music.
Yes, yes, yes. Welcome to another episode of Hip Hope Hooray,
Black Men Talking Health.
I am your emcee for this evening. I am Oya Gilbert.
And we got a really, really, really dope episode for you today.
In the building, I have some IMFs, which is the International Myeloma Foundation's top dogs.
(00:23):
I mean, like top dogs. and we are
going to be discussing today clinical trials specifically in
the black and brown community and a lot of the stigmas and stereotypes and
these cats are going to debunk some of those things and give you some real real
information and so to my right is dr joseph mckayle i call him dr j you can
(00:45):
check his bio google him and all that good stuff he got it's too long and on my My left is Jalak Baru.
He is the president and CEO of the International Myeloma Foundation.
Gentlemen, welcome to the show. Thank you for having us.
Thanks so much to be with you. So look, we're going to dive right straight into
it because, you know, this is how we do it on my listeners.
So I'm going to ask you the first question and either one of you can take it.
(01:09):
So typically, you know, in the black community, you have to Stiggy and all those
different things that have affected the mindsets of, you know,
the black and brown community. and a number of other things of mistrust in the health care system.
But specifically, we're talking about clinical trials. So what historical factors
have contributed to the reluctance of black and brown communities to participate in clinical trials?
(01:34):
And how can we work to overcome those things?
Well, I think first, I mean, trying to define part of the problem, right?
And you've already outlined some of it, that first of all, this goes back a long way.
Right. which is part of the challenge why we can't fix it overnight,
although I'm very excited about ways in which, as we're going to talk,
I'm sure in a few minutes, how we can address that.
(01:54):
But historically, it's really been the product of multiple things.
I would summarize it quickly by saying, one, there has been a lot of,
sadly true, but there has been a lot of misconduct in clinical trials.
You mentioned Tuskegee by name, and we could mention several others,
Where in particular disadvantaged populations, very often the black and brown
(02:17):
communities and often others as well, were not treated the way we now would
treat people as we conduct clinical research.
These individuals were not given the right therapy or not followed up correctly
or were actually worse than that, given bad therapies and not given ways to
overcome the side effects from it or were not appropriately followed up.
(02:38):
And so that built a really sad history, obviously, of the way research was conducted.
Add to that, we know that health in general is such an important part of our life.
And the health care system, the way it was built, the way it was designed,
and the way it's been implemented very often disadvantages those that are socioeconomically less involved,
(03:08):
that has historically affected black and brown communities.
And so those social determinants of health have been massive in the area where
people live, their access to groceries or food in general, childcare,
opportunities for employment,
the safety of their water, the safety of crime.
(03:28):
All of those things have had a compounding effect to that history of misconduct
within clinical trials. And then very often the lack of recognition of these
things in the general community.
That's sort of dispensing with, well, you know, this almost view of lesser societies.
It's tragic in our history, which I think, thankfully, over the last several
(03:52):
years is starting to turn the corner.
So that's been historically where we've been. But I know that Yellick speaks
very well to how modern day still has significant elements of these challenges.
And Yalek, I'm always interested in hearing from your side.
Absolutely, Dr. Joe. Oh, yeah, again, thanks for having us.
Yeah, yeah, yeah. I'm just trying to figure out how you just took over my show. I'm going to go.
(04:14):
Yalek, go ahead. No, go ahead. I'm sorry.
In addition to being and serving as president and CEO, I'm also a multiple myeloma patient.
And I have been a patient for the last 28 years. And I have participated in clinical trials.
And it is important to know that clinical trials are a prerequisite for a new
(04:36):
drug to be approved in the US by the US Food and Drug Administration.
While I respect and understand the historical implications of what happened.
We really need to respect that. We really need to also understand where we are
and really truly be energized by the future.
So where we are today is that because of not just the history but the,
(05:02):
differences in socio-economic situation of not just blacks but also the environment
in which they live, they don't have access to clinical trials.
That is number one. Number two is because of the preconceived idea that blacks
know about the history of abuse in the clinical trial system,
(05:28):
they don't get asked to participate in the clinical trials.
So that creates the situation today, not just the disadvantages blacks had in the past.
So, you know, I would completely agree with you. You know, as a lot of people
know my story, I'm also a multiple myeloma patient.
And one of the things that you said before in a previous interview is about passing the baton.
(05:53):
And so one of the things I would like to stress as far as to the black and brown
community is that even though these stereos and stigmas still exist to this day,
You have to remember that I remember that somebody before me,
a black and brown person, decided to do a clinical trial, decided to.
(06:15):
And obviously, back then, that that stigma and stereotype was even more profound.
But they decided to do it and which has me alive and you alive.
And so I think that's a very important piece to make sure that we point out to to to the listeners.
So one of the other things is, is, you know, how can health care professionals,
because that's another piece component to it, how can health care professionals and researchers.
(06:40):
Build trust with black and brown communities to encourage a greater participation in clinical trials?
Well, I mean, there's a lot of ways to answer that. I mean, it starts with,
I mean, how do you build trust anywhere with anything, right?
You've got to be genuine and you got to take time, right?
I can't build trust with you. I mean, you and I met, we were brothers,
you know, instantly, but trust typically takes time, right?
(07:04):
And so, and so what I try to instruct my colleagues in this is it's not just
about you come to me when you're sick and I'll provide something.
It's that kind of community engagement, that investment of time and energy and
of genuine compassion in the community that you care.
You know, if someone has developed that kind of relationship with their healthcare
(07:25):
practitioner, we know, especially in oncology, it improves their outcomes.
So your relationship with your doctor is not just a warm, touchy-feely,
hold hands, sing kumbaya kind of moment. This actually affects your outcome.
And so for us, we have a lot of work to do. Our standards now,
thankfully, are very high.
So in light of the terrible misconduct of the past, we have regulations and
(07:46):
rules and so on, but it's on us to build that trust.
I also think it's on us to provide the right kind of education.
I mean, you say the word clinical trial. If I walked out in the street today
and asked people the microphone about clinical trial, you're going to get a
hundred different answers.
And you said it correctly, that the people have gone on before have given you
benefit, but it's also really important to know that the vast majority of our
(08:08):
patients who we would put on clinical trial is for their benefit.
It's not like I'm donating my body to science.
No, no, you are getting a chance to get a drug earlier, to get a new therapy, to give some.
I have seen hundreds of lives of patients over my career that have been extended
because of the clinical trial they were on, not just because we stand on the
(08:32):
shoulders of giants, as we often say, which is true, but their own benefits.
So really, I think it's a combination of the right education and that compassion
and time that we need to put in for us to start to rebuild that trust,
recognizing it's going to take time.
I have to be conscious of the fact that that person doesn't trust.
And I don't want to do what Yellick said and just pretend, oh,
(08:53):
well, that person is from a historically disadvantaged group.
I won't even talk to them about trials. Sadly, we've seen that.
So it's on us, too, to start saying, no, I should be thinking about a clinical
trial in all of my patients, independent of their background.
So before I let you chime in and elaborate on that, one of the things is that
that's different back in the past.
(09:14):
So, you know, hospitals and things of that nature, health care professionals,
unfortunately, they got KPIs just like any other place because I've seen that happen.
And so, you know, they can only see a patient for 15, 20 minutes and it's on
to the next thing. And it's unfortunate, and I think that's a sad.
Practice that we have, because especially when you're talking about cancer,
(09:35):
people's lives are on the line. So that's one thing.
And then the other thing is when I think about my age in that era,
you know, you typically had the same doctor from almost like childhood all the
way to as a grown person. And that's what's so different now.
And I just want to point that out. That's another aspect that I think that creates
(09:56):
a disparity and an issue along with that.
Could you, you know, elaborate with that? Sure. You guys brought really good points.
What I will add is today for a clinical trial to be designed and initiated and
for patients to participate,
(10:16):
there are a lot of regulatory guardrails that exist that prevent from the injustice
that happened in the past from happening again.
So I think blacks and all of us really need to understand that there are those guardrails.
The second one is clinical trials are designed by humans.
(10:36):
There are doctors, pharmaceutical companies, clinicians that design these clinical trials.
Patients should and can be invited to help design those clinical trials.
And if patients that look like you and me are part of the design process,
the trial is going to be designed, and, in my opinion, have better trust from
(11:00):
those that we are going to invite to be able to participate in those clinical trials.
You hit a really dope point because my slogan is we should be involved from
conception to commercialization when it comes to that.
And another thing about clinical trials that I don't think a lot of people know
is that you are having some of the best medical professionals treating you when
(11:25):
you're doing a clinical trial.
It's not like the normal doctor that you might see in an area that might not
have the specialty in it.
But when you're on a clinical trial, you have high level specialty folks from
the nurses to, you know, to the specialists as well.
I'm going to jump into number three. And this is this is this is a really good one. So what steps?
(11:47):
Obviously, we can talk about all the problems, but what steps can be taken to
ensure that clinical trials are conducted ethnically? and with the best interests
of their communities in mind.
Well, I think part of it is what Jellic shared with us, is that there are some
guardrails and standards that are extremely high that have been put in and unfortunately
(12:08):
had to be put in because of the misconduct in the past.
But it's not just the rules and regulations, you know, it is now I think of
it, we're taking it a further step where the rules and regulations show you,
you know, the sort of the minimum standard and that careful guardrail.
But as we've already been intimating, I think it requires more than that.
(12:29):
It requires the engagement of all parties involved to appreciate the importance
and value of diversity in clinical trials and how they're conducted.
So what does that look like? That means bringing together the FDA,
the pharmaceutical companies, the medical community, the lay community,
and the patient community.
And everyone has a role together. So engaging, like you indicated,
(12:53):
Oya, that it's so important that we have patient engagement from the very start.
But also in the understanding of what's happening here. So what is preventing?
What are those barriers?
We've talked about the historical trust and so on, but sometimes it's very,
very pragmatic. Why do we keep doing clinical trials just in certain states?
You know, up to 80% of African-American patients live in 18 states in this country.
(13:16):
And often those are the states not represented in a lot of these clinical trials,
Alabama, Louisiana, other places like that.
So sometimes it's sheer geography, but it's also recognizing,
like you said, the patient engagement and the materials that are given to patients.
Why do we always have a picture of a white person on the wall?
You know, there's got to be so people and the teams that we have,
(13:38):
right, that we reflect that diversity.
When someone comes in, it doesn't necessarily mean that everyone on the team
has to be of a diverse background, but when someone comes in and do a clinic
and they see at least someone who looks a little bit like themselves,
there's a comfort that comes with that. It's a recognition that we're all in this together.
I agree. So I think there are multiple ways of doing so in the partnership with
(13:59):
everybody, in the engagement of each one of those stakeholders,
and then of us as doctors.
You know, I participated recently in the DRIVE initiative. This is Dr.
Ramo Barahay from Indianapolis, who is really passionate about this issue and
has come up with, I won't go through it in detail, but sort of a five-step process
(14:19):
to foster and ensure that we have appropriate diversity in clinical trials.
Like in myeloma, 20% of people in this country with myeloma are African-American.
And most clinical trials have 3% to 5% representation. And that's crazy.
That's crazy, right? Yeah, that's crazy. And so one of the things that he indicates,
for example, is the patient engagement that we've discussed,
but also having a diversity officer for all these trials, who oversees it,
(14:44):
not as someone who's trying to prevent the trial, but to support and say,
how are we doing in this trial? What are we doing to reach out to this community?
How are we trying to find ways to ensure? And we've done this in some of our
trials recently, myeloma, one of the largest trials we've just done here in
the United States, the determination trial, had 19% representation.
(15:04):
And that's because it was a conscious effort to say, let's bring this trial
to different communities.
Let's have a plan and a strategy to ensure that we make this happen.
So that's a tip of the iceberg. I mean, you know, I could bore you all day long with answers to that.
But to me, that's very important because where there's a will,
there's a way. And that will has to have a way to be fulfilled.
And I think we're starting to see that and we can even do more.
(15:28):
And that's why I think the IMF has to be a big part of this,
because the IMF is one of the very few organizations that can actually bring
all those groups together in a meaningful way.
It's hard for the pharmaceutical company to host this. It's hard for the FDA
to host this. It's hard for patients themselves, if you will,
to host this or the lay community.
But we want to be the convener to facilitate and make that happen.
(15:48):
That's dope. You want to elaborate? I agree with everything.
What I would say is also it is not versus or end. It is end.
It's not blacks versus whites. It is not patients as patients versus the doctor
or the doctor and the patients against the pharmaceutical companies.
(16:11):
We have to all understand the benefit of elevating participation in clinical
trial in general and ensure that we all benefit from that, that's one.
The second point is which Dr.
Joe indicated last, which is others, as you mentioned, may have KPIs.
(16:32):
The number of people they see, then where they have to initiate a clinical trial,
but a nonprofit organization like the IMF, which is a very patient-centered organization,
organization we advocate for we educate
on behalf of the patients right you're not
governed by those rules exactly we do have
(16:53):
our own kpis right the patient is in my opinion the kpi and we need to make
sure that we have a seat and we are seen as a convener of these various entities
and ensure that we are elevating participation in all man i couldn't agree with
you i couldn't agree with you know,
one of the things is, to both of what you said is, first and foremost, you gotta get educated.
(17:17):
You know, I felt like in order to not let things of the past happen,
you need to know what's going on, so you need to be educated.
We can also have a seat at the table, but if you have to have a seat at the
table and you're not educated and not know what's going on, then there's really
no business for you being there.
But one of the things I always try to keep it real is that.
(17:37):
In our community, especially black men, I mean, I don't want to,
I can't have this conversation with you without saying that,
you know, some of this stuff is self-inflicted.
You know, I have friends that just won't even go to the doctors,
let alone talk about a test.
And, you know, I asked them why. And one of them said, hey, I don't want to know.
And that's not like an anomaly as a response.
(18:01):
So I really want to make sure it's clear to to the listeners is that,
you know, we have to sometimes get out of our own way, especially understanding
that it is 2024, not 1924.
And so it's important for me to express that, that especially as black men,
we got to go to the doctor, stop using the ER as our PCP and do things in the
(18:24):
right way and kind of get out of that old stinking thinking.
Can I comment on that for a second? I totally agree with you.
Right. You know, and lots of different ways.
I mean, I was recently we did a program in Indiana in barbershops,
right, to reach out to men.
And one of the gentlemen who had founded that organization explained to me that
one one of his black friends said to him, you know, my wife goes to the doctor
(18:49):
all the time and she and I live in the same house and eat the same food. So if she's good, I must.
And he wasn't saying it. I mean, he was serious, but he was serious.
And so there are, so, so one of the ways I think to help break that barrier
down a little bit is to meet people where they're at and, and,
(19:09):
and have them endeared to medical information that may not just be in the doctor's office.
So that's why we do programs in barbershops, in churches, in fraternities,
in sororities, and in different places where we can say, and this is what the
IMF is doing through our empower program,
you know, M stands for myeloma power, where we're trying to reach people where
(19:29):
they're at to explain the basics of health.
In particular, obviously, we're interested in having them understand what may
happen in myeloma because it so adversely affects the African-American community.
And then maybe lastly, if I can add this one thing specific to clinical trials.
You know i hope i'm a pretty good communicator and now dr joe
loves loves to share things with people but it's a
(19:51):
lot different it's difficult to really understand what you're saying right now
but when it comes from patient to patient like you doing exactly what you're
doing right now you know we've created a program called the clinical trial mentorship
program where we are asking patients from historically underrepresented communities
african-american community latino-american community,
(20:14):
Native American community, who have been on a clinical trial to share their story.
Sometimes the story's good. Sometimes the story's challenging.
But so that when someone hears it peer to peer, so as we're developing this
program now, we're going to be able to use, whether it's through social media,
our in-person meetings, our community engagement, which is such an important part of health.
(20:36):
I really believe in that notion of going out to the community,
not just waiting for them to get sick and come to us.
I think this program is going to help us with that.
So when we did a program in Detroit and there was an individual there who was
sharing his experience of being in clinical trial, I'll tell you,
everybody in the room was listening.
It's one thing for Dr. Joe to say it. It's another thing for patient Oya to say it.
(20:59):
And we think that's going to be a big part of what's coming in the future because
that will even engender that trust that much more when people hear it from someone
within their community,
even, you know, working with you, working with Ice-T as we have,
and others who want to be spokespeople so that people hear from within their
own community the benefits of clinical trials.
(21:20):
Man, I agree with you. It's like, you know, it's just a different way to deliver
the message. And one of the things you both were saying is we got to be in the trenches.
We got to get, you know, grassroots, the trenches, the block,
that's where we need to be to meet people where they're at so we can understand
what truly is their mistrust issue and be able to build that trust.
So I'm going to go to my last question. So how can we increase awareness and education?
(21:44):
I know you have touched on a lot of it already within the black and brown communities
about the importance of clinical trials and the potential benefits of participating in medical research.
The number one information I think your listeners should take is what I said initially.
In order for you and I to have the next best treatment, someone has to go through
(22:09):
a clinical trial, right?
So clinical trials are a precursor for a drug being available.
Number two is that we have to understand the history and the stories that have
happened over the last hundred years, if you would.
But we also really need to ensure that we are not going to repeat that story
(22:31):
as we move forward into the future.
So for us, as patients, as a doctor, as clinicians somewhere else,
and whoever your listeners may be, really need to ensure.
We make commitment on behalf of our future self in order to make sure that we
(22:53):
are going to participate in the clinical trial so we can help bring the drugs
that are important for patients.
But it's also important what Dr. Joe said, that clinical trials is not about just paying it forward.
It really is us benefiting from the drugs of the future today.
Day. We are not going to be experimented. We are not going to be guinea pigs.
(23:16):
We are not necessarily always be able to get a placebo.
We are going to get what's called the standard of care, whatever that standard of care may be.
So I think I will let Dr. Joe explain the Empower program and what we are doing under that umbrella.
But as a patient, we really need to dedicate ourselves to ourselves.
(23:38):
I completely agree. You know, one of the things about the clinical trial,
and you said it's about the person at the time frame,
is that, you know, without having, you know, when we talk about the clinical
trial and the importance of it, you know, we're talking on that level of precision medicine,
you know, and if you have a situation where, you know, the black and brown community
(24:02):
and you say, well, these drugs aren't for us.
We'll never get to that space if you keep just using that same old,
you know, playbook, as they eloquently say.
If you got 30,000 people participating and only, you know, 1,000 or 5,000 are
African-American, then yeah, it's going to probably be more tailored to that situation.
(24:24):
But that's not the, you know, the other folks' fault.
And so we do have to participate in precision medicine. And so I'll let you follow up with that.
Yeah, no, I mean, beautifully described, of course, by Yale.
I think logistically, this means, you know, public education,
breaking the myths and the stigma.
I mean, as I said before, you say the word clinical trial means a lot of things to different people.
(24:46):
People think that they become a guinea pig and they get put in this maze and
the door behind them immediately locks and they don't know where they are.
I mean, this is part of routine medical care. We've been working very hard in
something called DCTs or decentralized clinical trials where it's not just at
the big, big academic centers,
but that we can provide this kind of care out in the community because that's where people live.
(25:08):
That's what we need to provide to them. We need tools for people to find clinical trials.
Just today, we launched at the IMF, this Spark Cures collaboration where on our website.
Anybody can go on and do a very sophisticated search, even anonymously if they
want, of how to find a clinical trial
on multiple myeloma across the whole country or even in their region.
(25:32):
So we have to bring it to the people and not make it that they've got to go
and wait in a big line or make an appointment at a big academic center in three
months from now when it's going to be around.
And so I think that logistical democratization of clinical trials,
if I can use that word. I'm not running for office, brother.
Hold on, wait a minute. Before you do that, because my listeners might break
(25:54):
that word down in layman's terms.
What it means is bring it to the people. All right, there you go. There you go.
Bring clinical trials to people instead of making people go to some very challenging
place to find a clinical trial.
And we want to bring it to the people. And by having people share their experience
through our Empower program as we go community to community across the country,
(26:16):
having people understand the disparity in myeloma, the ways in which we can
overcome it, we want to give that general education as well about what clinical trials are.
That's part of rebuilding that trust. So that someone says, okay,
I'm comfortable enough even just to go to my family doc to get my routine blood
work or get my routine exam.
And then if they come to talk to me someday about a clinical trial,
(26:36):
it's not that far off of a step because I've already reestablished that trust. Man, that's fly.
So go ahead, go ahead. I'll add one final item in that discussion.
Not all Blacks are Blacks, meaning the problem that I have in the Dallas-Fort
(26:57):
Worth area is very different than the problem that I will have in the Detroit
area. Understood. Gotcha.
And so the solution needs to also be tailor-made for that particular community
in which we are trying to solve.
So while the problem of not being able to participate in a clinical trial is
(27:19):
common or unique, not unique,
the solution may need to be tweaked a little bit based on where you live or where I live.
Man, listen, that's an excellent, excellent point.
So gentlemen, listen, you know, I could keep you all here for the rest of the
night and we could do this all night.
But we're going to close. So I typically on my show.
(27:41):
I know I'm great though. Y'all off-guard typically on my show I close with with
one last question and so I'm gonna give it to you. Dr.
Joe first So in your normal everyday life outside of dr.
Joe in When you want to get amped up geeked up pumped up maybe running or something,
Give me a hip-hop song that you listen to.
(28:04):
Oh boy Boy, that's going to be tricky, man.
I'd listen to anything you would sing.
I got to lead with that. I'm sucking up to the chair here, but I got to tell
you, you'd laugh if you knew what I listen to when I run.
So I actually, I listen to a recording of the Bible by a guy who reads it out to me.
(28:30):
So I figure that's how I read the Bible. Oh, man, I'm not going to laugh at
that. No, that's not exactly hip-hop, but it gets me thinking while I'm running.
Okay. And maybe it distracts me a little bit from the hills and the different
things that I seem to run every day.
So if you go on your past, just what's a hip-hop song that you like in general?
Oh, man, you're going to kill me now. I don't want to, I told you, anything you sing, man.
(28:55):
All right, I'm going to go with that one. Uh-oh, he Googling.
I'm going to go look at what is hip-hop.
Thank you for having us listen i thank
you guys for joining me uh we're here at the uh international myeloma foundation
support group support group summit annual it's 20 what is the 25th 25th anniversary
(29:20):
and so like i said as i end all my podcasts peace out and keep 5-0 guessing.
Music.
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