Talk of the Towne episode 08: ZERO Prostate Cancer
Antidote’s podcast, Talk of the Towne, hosted by Antidote’s Senior Clinical Informatics Manager, Dr. Richard Towne, is an interview series featuring members of Antidote's partner network. During each episode, Rich and his guests take a closer look at particular therapeutic areas, the latest research developments, and specific pain points that impact the patient population.
September is Prostate Cancer Awareness Month, which provides the perfect occasion to feature Dr. Reggie Tucker-Seeley and Kris Bennett from ZERO Prostate Cancer. Dr. Tucker-Seeley, Vice President of Health Equity, and Kris, Director of Health Equity and Community Organizing, have devoted their careers to advancing representation, reducing barriers to health equity, and building communities to improve the patient experience.
In this episode, Rich explores these areas of expertise focusing on their relevance to the prostate cancer patient community. The conversation touches on research developments, the importance of medical research, and ways in which industry professionals can adopt a patient-centric approach to all aspects of the clinical trial process. Listen to the episode below or scroll further to read the transcription.
Talk of the Towne episode 08 transcript
Rich Towne:
Hi, everyone. Welcome to Talk of The Town, the podcast from Antidote that bridges the gap between clinical research and conversation. I'm Rich Towne, a trained pharmacist, and the senior clinical informatics manager at Antidote. Today I'm thrilled to welcome Dr. Reggie Tucker Seeley and Kris Bennett from ZERO Prostate Cancer, one of the members of Antidote Partner Network.
Dr. Tucker-Seeley has over 20 years of experience working in cancer, public health, and the health disparities research, and has a specific focus on racial and ethnic disparities and their impact. His past work has involved transforming health disparities policies, and in 2017 he was selected for the Robert Wood Johnson Health Policy Fellowship program. Since 2021, he has worked as vice president of health equity at ZERO Prostate Cancer, where he works closely with ZERO's leadership and racial disparities task force to create greater access to high quality healthcare, improved prostate cancer outcomes.
Kris's past experience is centered mainly around health equity and health disparities, and he has worked in community healthcare, homeless services, and the political sector. Kris has an undergraduate degree from Leslie University, a master's in management from Durham University in the UK and is working towards a dual MSWMPH from the University of Alabama. Since 2022, he has worked at ZERO to increase awareness, improve health equity, and connect with the community impacted by prostate cancer. Welcome to the show, Reggie and Kris.
Reggie Tucker-Seeley:
Thank you. Thanks for having us.
Kris Bennett:
Thanks for having us.
Rich Towne:
Okay, so to sort of set the stage, second only to skin cancer, prostate cancer is the most commonly diagnosed cancer in men. It's estimated that one in eight men will be diagnosed with prostate cancer during his lifetime, and 3.1 million men are living with prostate cancer in the US. Prostate cancer is also the second leading cause of cancer death in men. When the condition is caught at an early stage, nearly 100% of those diagnosed will be alive in five years. While all men are at risk for developing prostate cancer, the risk increases significantly as they age, especially for Black and Latino men. Black men are 1.7 times more likely to be diagnosed with prostate cancer and 2.1 times more likely to die from prostate cancer than white men. Among Hispanic Latino men in the US, prostate cancer is the most commonly diagnosed cancer, comprising more than one in five new cancer diagnoses.
For over 25 years, ZERO has helped people impacted by prostate cancer, providing support, education and community for those who are diagnosed and their loved ones. As a leading national prostate cancer nonprofit, they work tirelessly on their mission to end prostate cancer, address health equity issues and help all who are impacted by the disease. Every September is designated as Prostate Cancer Awareness Month, an event dedicated to spreading the news about prostate cancer and emphasizing the importance of regular screening and early detection.
Today we're very excited to chat with Reggie and Kris about all things prostate cancer, highlighting recent breakthroughs in research and diversity and discussing the landscape of prostate cancer clinical trials. Just to start off with a really quick question, prostate cancer has a five-year survival rate of over 99% when it's caught early, as I mentioned before, obviously that survival rate over five years, but because there are no real symptoms, it's primarily detected through routine screening. Can you talk about why that early detection is so important and some common barriers that might prevent men from being regularly screened?
Reggie Tucker-Seeley:
I think you stated the importance of it, that if it's caught early, the survival is close to 100%. That highlights the importance. I think there's often an assumption that navigating healthcare is easy, that one can just sort of find what one needs really quickly. One can find a provider with whom one is comfortable and just sort of navigate the system and have the resources to pay for what one needs. I think those highlight many of the challenges that is those assumptions. That is oftentimes it is challenging to get to the healthcare delivery system. It is challenging to pay for what one needs in that system and then also understanding how to navigate it.
You often hear men don't want to take care of their health, men don't want to talk about their health at all, and so we also have to provide the context in which men will do those things. Women engage with the healthcare delivery system much earlier than men do and then when we finally do engage with the healthcare delivery system, it's generally to find something wrong. Like you mentioned, prostate cancer does not generally have symptoms, and so the reason that men might engage with the healthcare system to get a prostate cancer screening requires them to be proactive.
Then for African-American men or for men from historically marginalized communities, there is a history of discrimination and racism within the healthcare delivery system. You are also asking people to enter a system that has historically not necessarily treated them the best. So if more historically marginalized communities, they are navigating other systems which have historically marginalized or discriminated against them, and now you're asking them to now engage in another system that will potentially historically marginalize and discriminate against them. We have to ensure that we provide a context that is welcoming to men and that provides the resources for them to get the services that they need.
Rich Towne:
That actually brings up two questions. The first one that I'm curious about, is there any data suggesting, and one of the biggest problems facing healthcare today is that the healthcare appointments are very, very short. What percentage of patients that are eligible for prostate cancer screening actually receive it during a visit or primary care visit, let's say?
Reggie Tucker-Seeley:
Well, yeah. That is the challenge, that is the guidelines have not necessarily been consistent around who should get screened. The guidelines were that men that once they're age 50, they should have that conversation with their provider. But then if you're African-American, then you should be younger, and also the United States Preventive Task Force a few years ago gave a prostate cancer screening. I think it was either a C or a D, which meant that it was not recommended for patients. Then there was the issue of overtreatment that was present in the early 2000s. I think all of those challenges, the providers need to know what the guidelines are and then provide those resources to patients.
Rich Towne:
That's interesting because that's a misconception on the provider front maybe, where knowing about the necessity and how often they should be performing it, even counter to the guidelines. The question that I have next is then misconceptions on the patient's side. For a male patient eligible for prostate cancer screening, are there any common misconceptions that you think that there are and that maybe you could clear the air around?
Kris Bennett:
I definitely think there's a lot of misconceptions around ... especially early detection and testing. I think one of the first ones is the DRE, the digital rectum exam. I think that is probably one of the largest misconceptions is that you have to go in and do the DRE. Of course, we want that to happen, but we want that to happen in tandem with a PSA test. The reason we want that to happen is because it's going to give you a way more clearer picture of what's actually going on.
Again, to Reggie's point, we're not necessarily talking about these things at an earlier stage, and so we want to get the best baseline numbers that we can get and the best way to do that is to really get all that testing that we can get done. But again, it really does start off with a PSA test. That's just a simple blood test. We want to make sure that we're doing that and normalizing the conversations around that to be as proactive as we can.
Rich Towne:
We mentioned with the importance of paying for care. So when a patient hears something like a PSA test, how is that usually conducted? Is it part of a usual blood panel? Where would they get that done?
Reggie Tucker-Seeley:
Yes, it can be part of the usual blood panel that patients get. You can request it from your provider and also check to see whether or not that's going to be covered by your insurance. I think, again, it goes back to what I said at the beginning, this assumption that we all know what our insurance covers, all of the things that oftentimes you put the onus on the patient for knowing what their insurance covers. But yes, it's part of the usual blood panel that a patient can request when they go in to see their primary care doctor.
Rich Towne:
So I think this ultimately gets to something that I think is not just related to prostate cancer, but just the medical system as a whole. If a patient is listening to this and now they're thinking, "That's a good point, Reggie, I don't know what my insurance covers", are there any good resources or where would you point them to figure out ... obviously for the case of something like PSA, that's going to be something that most insurances will likely cover, but in the grander scheme of things, is there a suggested approach for patients to really engage with their insurance plans and figure out "How do I get the care that I need?"
Reggie Tucker-Seeley:
I mean, unfortunately, as we saw during the COVID pandemic, most of our health insurance is linked to where we work, and so really getting an understanding of what your coverage is through your employer, which then they should be able to connect you with someone through your insurance company to let you know what are the things that your insurance covers. I think there's a saying that Kris introduced me to, that unfortunately we don't necessarily know about many illnesses or what it covers until we experience it. Most of us don't know about prostate cancer until it impacts us or impacts our family, and then figuring out how to navigate that then comes next.
Rich Towne:
Perfect. So to move on from there, when we talk about covering drugs and just changes in a hole in the medical system, there have been two new radioactive agents approved for prostate cancer, Pluvicto and Posluma. Just in a whole, how do you see developments in the prostate cancer space, not just these two drugs, sort of changing the detection and treatment landscape?
Reggie Tucker-Seeley:
Any time new drugs or new treatments are made available, it's important to ensure that those are equitably accessible by patients. Generally what we see is that folks who have access to really high quality care get first access to those treatments. We actually have a podcast conversation on our website at zerocancer.org with the patient who recently had the Pluvicto treatment with a member of our health equity task force, Dr. Joe Osborne. I'd encourage your listeners to listen to that conversation because he talks about what it was like navigating this new radioactive treatment. I think regardless of what the new treatment is, it's important that the treatment is made equably accessible, and especially if it is showing better survival benefits, we have to make sure that that is accessible to all patients and not just patients with the resources to pay for it.
Rich Towne:
I think this ultimately ... I feel like the conversation always returns back to the same route and this shows part of the issue is when patients are diagnosed with prostate cancer, they receive their official diagnosis, how does their treatment journey usually start and what are some sort of pitfalls or errors that you see along the way with patients who are starting that journey?
Reggie Tucker-Seeley:
Generally, you get your PSA with your primary care physician, and there may be something there that shows that you need to see a specialist, so then you may go to a urologist who then will do additional testing, which might include PSA testing and an MRI. If treatment is necessary, then that might be sent to an oncologist. But I think to step back from what is the usual pathway, there's this expectation that folks know how to do this, which I think is a challenging part here, which I think is the great thing about organizations like ZERO that provides resources around how to navigate healthcare questions to ask your physician as you're navigating this process.
But I think when patients are navigating this, this may be the first time, many of them have talked to a urologist, have talked to an oncologist, and these are all providers and physicians that many of us don't necessarily encounter. Thinking about how do patients go from community to primary care to specialty care, and then after treatment, back to primary care and back to community, that can be a challenging journey that many patients may need some help in navigating.
Rich Towne:
To me, it sounds like a lot of the onus here is going to be on that healthcare provider to provide resources, point patients in the right direction.
Reggie Tucker-Seeley:
Well, I think too, it's important to think about the healthcare team. It's not just the provider, it's sort of the team that comes around the patients. There's research on the cost of care and who should have the conversation with the patients around costs. Oftentimes, patients want the provider to have that conversation, and the providers don't want to have that conversation just because they don't necessarily know the cost of care. I think it's important to think about the set or the team of providers that wrap around patients to help them navigate, be it physicians, nurses, nurse navigators, social workers, the entire team that should come around the patient to help them navigate that process that I described earlier.
Rich Towne:
One of the key things for this podcast that, regardless of therapeutic area, it always seems to be a difficult area for both patients and providers and the medical team to broach is pointing patients to where a clinical trial could be a good fit or vice versa if a patient saw something about a clinical trial in maybe a local hospital nearby or a local research clinic. What are some misconceptions specifically for prostate cancer regarding enrollment in a clinical trial?
Kris Bennett:
I wouldn't say maybe it's a misconception. I think the biggest thing here, I believe, is really the trust piece. I think there's always this idea that the olive branch has to come from both ends when in reality the olive branch should be coming from the medical side to the folks that are on the ground. Oftentimes we talk about how we're tailoring these messages about clinical trials, and it might not resonate with people in these communities. It's not really addressing the distrust, really addressing the access to these trials. Even if people can actually access these trials, what do those incentives look like? I'm specifically thinking of my grandmother on the south side of Chicago, and this might not have anything to do with prostate cancer, but it's very relevant to it. Grandmother lives on the south side of Chicago. Most of those clinical trials are way up north in places that a lot of times you can't even access on public transportation.
You might get a gift card for $40, but that gift card isn't going to do anything. Then, plus you might have those uber surcharges. There's a lot of different factors that kind of go into it from transportation to what those incentives are to what you might even feel like you're getting out of this and also how you're prioritizing these types of things. A lot of times, to Reggie's point earlier it's about how you're prioritizing these types of things for folks. Oftentimes people assume that we are going to be so concerned with our health when in reality we might be more concerned with what's going on in the day-to-day life, especially for somebody that doesn't have access to these types of things.
Rich Towne:
No, I think that's really, really profound, and I think that really gets to the core. You mentioned this is not just about both parties meeting in the middle with an olive branch. Clinical trials are meant to be patient-centric. The medical system is meant to be patient-centric. One of the ones you mentioned that I know is a hot topic in the clinical trial community is arranging and providing for travel. I think something that's the bare minimum is getting someone to the site, but then maybe beyond there, "Oh, well we'll arrange for your travel, but you also have a full-time job and you've got kids at home, and even if we pay for your travel, you can't actually make it to the site."
Are there any things that patients have explicitly said are missing, aka, I would love to participate in a clinical trial, but some things, i.e. travel, are missing, and are there any other things such as newer innovations in medical research and maybe something like decentralized clinical trials that you've seen making advances in prostate cancer space or just in general?
Reggie Tucker-Seeley:
Yes. In the cancer space generally, or in the clinical trial space, there's an organization called the Lazarex Foundation. I think they used to partner with Massachusetts General Hospital and their cancer health equity program where they provided financial resources for patients as they were navigating a clinical trial. I think it's important to make sure that those resources are provided, that engaging in a clinical trial does not cause financial harm to the household. Again, this is sort of the assumptions that we have about people navigating healthcare generally and then clinical trials specifically. someone is navigating care, they may not be able to work if that was the primary breadwinner of the household. Now the household doesn't have that income to count on as that patient is navigating care or clinical trial.
I think taking what Kris mentioned, taking everyone's entire life into account, this one considers whether or not one can engage in the clinical trial. That can influence, whether or not a provider assumes that a patient will say yes to engaging in a clinical trial. If an investigator needs to meet their accrual numbers, which they all do, they may think, "I'm not going to ask this patient. This patient seems like they may not necessarily say yes. So I'm just going to skip to patients that I think will say yes to the clinical trial", and generally those are going to be patients who look like they have the financial resources. In this country, historically, individuals who have more resources are non-people of color.
Rich Towne:
I think that actually leads perfectly to another question that I feel like I always ask each episode on Talk of the Town. Let's say that there is an investigator researching prostate cancer, and they obviously receive guidance from above and resources from above, but themselves as an individual, want to increase diversity, reach other marginalized communities, and they really want to make this clinical trial more accessible for everyone. What advice would you give them on how can they achieve those goals?
Kris Bennett:
One thing I would say is, first of all, listen. I think a lot of these things are going to sound very, very simple, but I mean, oftentimes these are things that are skipped, especially when we're coming from a place ... it's kind of that power dynamic. We're seen as the experts when in reality the folks closest to the pain have to have the power. I think for me, some of the things that I've seen, especially in the work that we've done, is really listening to communities. I know oftentimes people see our name and they're like, "Oh, they have all the resources in the world." That might be true, but Reggie and I, we talk about it a lot on our team, just because you build it does not mean they will come. What you really want to do is make sure you're listening to the folks on the ground to make sure that these things are resonating with them and that they're actually going to help.
So really kind of personalizing that trial. You want to make sure that this is something that's going to actually benefit these folks and that it's something that they're going to be able to see themselves in, making sure that they're tailoring those kinds of messages around what the clinical trial is to make sure that it's not a kind of one size fits all thing. Then again, just really addressing that distrust. That's a valid reason why folks of color in marginalized communities do not participate in these clinical trials, so what is it that you're doing to be as transparent as you possibly can about what has happened in the past? Just being able to address that, that goes a long way and opening up some doors. Then just being able to identify some of those stakeholders and champions in the actual community.
Again, we talk a lot about this on our team. We don't want to reinvent the wheel, especially in communities that we don't live in. I think that's a misconception and a lot of this space where all Black folks are the same. Being Black is not a monolith. Being part of any community is not a monolith. We want to make sure that we are bringing experts to the table or they're building their own table and informing what we're doing. Those are a few things that I would definitely suggest.
Reggie Tucker-Seeley:
I second those points. I think oftentimes when we talk about the distrust or the mistrust that communities may have with the healthcare system, and especially in the Black community, we go to Tuskegee, which was a horrendous event, but we also have to triple that with contemporary racism and discrimination that folks experience. How is your organization addressing the historical mistrust or events that the community may have with you, but also contemporary racism and discrimination that folks experience? Addressing those things simultaneously I think will be important in developing and being viewed as a trustworthy partner in the community to ensure that folks engage with your healthcare delivery system and with eventually your clinical trials.
Rich Towne:
I think that's super powerful because I mean, transparency is key. I feel like unfortunately in the medical system it's the opposite of transparency. There's a lot of opaqueness, there's a lot of extra steps and hurdles that maybe intentionally or unintentionally are preventing people from getting the care they need. Something that you mentioned that I kind of want to dig into this more because I think there's an extra dynamic with prostate cancer specifically, where beyond all of this, beyond the historical distrust and all the other factors that you talked about, we talked at the start that prostate cancer, especially in the early stages, doesn't present with symptoms, isn't seen as a problem, so how do you reach patients that not only are they distrusting of probably when they actually are having symptoms and need treatment, but before it gets to that point?
Kris Bennett:
I mean, it's a lot of upstream work. It's a lot of trying to be as proactive as we can, and really it's a lot of normalizing and breaking that stigma that's attached to it. Anytime, especially in communities of color or just really marginalized communities, there's that kind of strength or manly-hood attached to anything that has to do with the sexual function in met. We want to be able to break those stigmas and have those conversations. One thing that a kind of champion of ours, David Moffitt always talks about, he always says our biggest strength is our vulnerability. I think that is something that we can all kind of attest to as anybody who might identify as a man feels, that strength to be vulnerable is really big.
We want to make sure that we're going in normalizing these conversations, making sure that these messages are being told and actually believed by these trusted partners and these key people in communities, not just that we're talking at them, telling them, "This is what you need to regurgitate to your folks or to your congregation". We really want to make sure that folks feel empowered enough to be able to, again, empower others on their journey to get folks to buy into this.
Rich Towne:
I think, absolutely, empowerment is the key. as much as we want the healthcare system to change, I think a patient being empowered, asking the right questions, taking the right actions, and feeling supported by organizations like ZERO, I think that's going to be absolutely critical. So we've talked about the provider, we've talked about the patient, and we've talked a little bit about patient advocacy groups like ZERO, looking at it from the root of a clinical trial or the treatment system. If we look at these sponsor companies, they've obviously struggled for decades and increasing diversity, even though they've stated they have these goals.
I guess this is a pretty big question, but why do you think this is still such a problem for them to actually find the right patients, and what do you think they can do on their scale of reducing those barriers for study enrollment?
Reggie Tucker-Seeley:
I think it's also about who's asking the question. When you think about the research question, who posed the research question? Who was around the table and were representatives from the community around the table when that clinical trial was developed? I think issues around workforce diversity. I can tell you in our conversations with sponsors, we don't often see a racially diverse group of people asking us to help them engage with communities of color. I think it starts with a workforce that looks like the community in which you are trying to engage and ensuring that people in the community see people who look like them and trying to get them to participate in those particular studies. I think starting there, increasing workforce diversity will go a long way in terms of addressing this issue.
Kris Bennett:
I definitely want to double down on the representation piece. I think it's something that even myself, this is a large reason as to why I got into this space. I think that's something that a lot of these companies can definitely buy into and start to really invest in the community engagement piece, how we're actually intentionally engaging with the community and trying to get them to really see us as that trusted partner. This is going to take time. I often say racism did not happen overnight, so we should not expect a solution overnight. Angela Davis says all the time in a lot of her talks, we're not doing this work for our generation, we're not even doing this work for the generation directly after us. We're doing this work for 50, 100 years after we're gone. So being able to lay that groundwork and engage in the community in that way.
Then the last point that I feel I want to make is oftentimes I feel like we operate in a space of default versus the work that we're doing being intentional. With prostate cancer as an example, of course you're going to be working in spaces with Black and Brown community because the rates are so much higher in those communities, but what are we doing to actually be intentional about the work that we're doing in those spaces? That's something that I pose to a lot of the folks that I work with is what are those intentional actions that we're doing to increase the representation, to increase that trust, to increase just that overall feeling of we're doing what we're supposed to be doing because we know we need to do it versus we have to do it because we're working in this space of default.
Reggie Tucker-Seeley:
Too, I want to add something to ensure that the listeners don't just hear that representation matters and that's all that matters, because generally what some organizations will do as someone who has participated in multiple diversity efforts is that they will hire the person, and usually it's only one or two, and then very little effort is focused on retention. It's not just recruitment of a diverse workforce, it is the retention of a diverse workforce. Thinking about the environment in which you are recruiting people of color or people from historically marginalized communities, and whether or not your culture has to now change to address that new workforce diversity that is present to ask the questions that are relevant to ensuring that your clinical trial is diverse.
Rich Towne:
Absolutely. One of the resounding pieces of feedback we've gotten from patients, and Kris sort of brought this up with the story about his grandmother, when they're picking sites and where they are, how important can site selection be and the face that greets them at the clinical trial? How important can that be to patients to have someone in their neighborhood or within a reasonable travel distance and be greeted by someone that looks like them?
Kris Bennett:
that's almost everything. I mean, I understand that folks are going to invest in these clinical trial sites because they know that they're going to be successful. It's a lot of money that's going into it. I am not naive. I understand that. But again, this is that operating in that space of intentionality, if we want to be intentional about this, we have to bring these sites to the people. Everybody talks about meeting people where they're at. This is meeting people where they're at. You can not get any closer unless you're moving this clinical trial into their helm. You want to be in the community. You want to be able to provide them with a space where folks feel comfortable and they can see themselves in this stuff.
To Reggie's point, that the folks that are now in this site who might look like that community are being supported by this organization. I would 100% say it is critical and necessary if you want this to be successful. If we really want to stop hearing about why aren't clinical trials diverse, I mean, we have to do things like this in order to actually make sure that they are successful.
Rich Towne:
So beyond just moving it into the neighborhood, sometimes a sponsor might've already launched a trial or looking to onboard new sites. One of the things that arose out of the pandemic that can be seen as a boon for medical research is the rise of decentralized technology, aka, bringing treatment into the home. is there anything that can be decentralized, like a telehealth visit or just a conversation with the investigator at the site? Like you said, Kris, unfortunately they've spent all this time and effort signing up sites, but once they've decided, "Oh, maybe this isn't the best fit for the patient population we're trying to reach", is there anything that they can do to sort of reach the patient before the patient gets to the site?
Reggie Tucker-Seeley:
Yeah. I think the struggle is that the process was allowed to get that far, that the organization allowed the process to get that far to where they realized that, "Oh, we are not connected to the community that we are trying to reach, and maybe our investigators are not prepared to engage with this community." Again, it goes back to something that we talked about earlier, that is who is around the table when the initial research questions get asked and when the initial proposals get developed to ensure that the community in which you are trying to reach is at the table to give you feedback in terms of where these studies should be conducted. Because, again, I know that we have studies that have made it this far, but generally the reason is because the people who the study needed to reach were not there to ask the research question or were there to be part of the conversation as the study was being developed.
Rich Towne:
I think that's exactly it. What's that quote? It's cliche, an ounce of prevention is worth a pound of cure.
Rich Towne:
So to put the bare minimum effort ahead of time is going to pay off dividends down the road. I do think that for any organization, I'm sure there are some that ZERO works with, that are much more engaged than others and actually implementing these changes that you've suggested.
Reggie Tucker-Seeley:
Well, I think too, I mean we saw in 2020 when everyone was coming out with their statements against structural racism and folks were wanting to do something to address the sizable disparities that were coming to the fore during that time, but I think oftentimes the infrastructure of many organizations is not really set up to do anything after making that statement. I think making sure that there are processes in place for engaging in communities and genuine engagement, the engagement that Kris mentioned earlier, protocols or infrastructure to actually listen to what the folks in the community need in order to meet those needs.
I mean, I recognize that Kris and I work at a prostate cancer organization. It's prostate Cancer Awareness Month. But many of these issues, regardless of the month, are going to be relevant for ensuring that we have diversity in clinical trials across different cancers that we have that we attempt to eliminate the healthcare disparities that we see in terms of access and quality.
Rich Towne:
That actually kind of brings me to a slightly different point when we talk about other barriers. This is more so sort of specific about prostate cancer in general, is when we look at inclusion/exclusion criteria, how those are put together, how those are assigned, sometimes we see that those are overly strict or overly restrictive as to the patients that they allow in. Once again, this is a common question I ask people, is there anything in regards to the inclusionary factors for a patient to participate? How have inclusion exclusion criteria potentially made it difficult for patients to enroll in the clinical trial and are there any things that people can do to help fix those?
Reggie Tucker-Seeley:
Well, I think one of the challenges is that people of color generally have more than one chronic condition as we age. The presence of multi-morbidity may exclude patients of color from specific clinical trials. So really thinking through the ways in which multi-morbidity may impact the diversity of the clinical trial participants. The other thing is, I think there was a paper, I want to say it was in 2017 or 2018, that showed that for some protocols, they were basically just cut and pasted from previous protocols. So a really sort of thoughtful evaluation of whether those inclusion and exclusion criteria are relevant for that particular study, and again, ensuring that people from the community are around the table as those evaluations are happening.
Rich Towne:
100%. Because that's something that we've commonly seen is a sponsor might put 40 or 50 criteria in, which might guarantee that they have this very homogenous population and that's not going to match the people that are actually being treated with the drug. I just think that's an incredibly powerful point.
My last question I always ask is a bit of a doozy. I already asked this partially, but I think it's great given the way the conversation has progressed to maybe revisit it. The way I like to end Talk of the Town, and I'd love if both of you answered, is giving a piece of advice to one of three parties, one specific piece of actionable advice. The first person is, let's say, a Black man with prostate cancer. In regards to clinical trials or maybe if you want to be more broad of treatment in general, do you have any advice or pointers for them that they can implement in their journey?
Reggie Tucker-Seeley:
I think it's important to know your PSA numbers, because having that initial baseline in terms of being able to determine whether or not that number has increased, because it is the slope of your PSA number over time, that is indicative of whether or not there is an issue. So getting that baseline PSA, and so for Black men, start having that conversation in your late 30s, early 40s about getting that baseline PSA and being able to track that every year at your annual physical.
Kris Bennett:
I would say, and this is just based more off of stories that I've heard while kind of doing my job in this space, our folks, our people want us here, so we have to continue to arm ourselves with the knowledge to be able to stick around. To Reggie's point, just understanding your PSA. Don't be afraid to ask questions and most of all, don't be afraid to just talk about this stuff. I think the stigmas that surround it are quite literally killing us, and so we want to make sure that we are breaking that stigma. Let's normalize these conversations as much as we can. I know I say it a lot, I played basketball, when we would play basketball and we'd wear pink, everybody knew it was for breast cancer. Let's normalize the conversations around prostate cancer as well. So just normalizing those conversations is something I would definitely try to get across to a Black man for sure.
Rich Towne:
Perfect. Another person that might be listening to this podcast is, let's say an investigator of a site, let's say, in Chicago, that site in Chicago earlier that you mentioned. They hear this podcast and they really want to make a difference for how they approach the community and making sure that they make their trial accessible for all. Just at their level of an investigator. They don't have control over the protocol, they don't have control over where the sites go, but they do have control over who they're able to screen, what piece of advice or anything else that you'd tell them.
Reggie Tucker-Seeley:
They probably have a bit of control over who they hire to work on the study, and so making sure that you get people from the community that you want as part of your clinical trial to be staff members on that study.
Kris Bennett:
Be as intentional as you can about the decisions that you can actually make. So just doubling down on Reggie's point, you're going to be able to hire staff, make sure that you're hiring folks from the community that understand the community and not just look like the community.
Rich Towne:
That's perfect. I think that really wraps up one of the biggest things and one of the easiest things people can do to implement today, because always a need for more help at the sites and I think this is a really easy way to start. The last one, when we think about the ... let's say a therapeutic team at the study level, at the protocol design level, they're listening to this podcast and they're inspired, they might think "We do need to have people from the community around the table the next time we do it." Is there anything else on top of that that you would tell someone at this level of maybe a pharmaceutical company or maybe another academic institution that's conducting clinical research?
Reggie Tucker-Seeley:
I would say stay the course. I mean, I think one of the things that I've seen during this process is something that I've termed equity fatigue. They say, "Oh, we're talking about health equity again, we're talking about health disparities again." But yes, we're talking about it again because the disparities are still there. I think folks often want to continue doing the things as they've always done them. We know that that's not going to work and so change is required here and just stay the course. If we genuinely want to address the disparities that we say that we do, and if we genuinely want the health equity that we say that we want, that's going to require us to do things differently.
Kris Bennett:
I love that. I mean, I would say again, the folks closest to the pain should have the power. They're going to know about their life, they're going to know about what's going to keep them engaged. They're going to know about what is going to just keep them in these types of trials. So listen, it is very simple. Listen to what's kind of going on in the community,
Rich Towne:
I think that's a great place to wrap up. Where can patients and providers and everyone find more about what you do at ZERO Prostate Cancer?
Reggie Tucker-Seeley:
All of our information is available zerocancer.org. Kris and I lead the Black Men's Prostate Cancer Initiative, which includes a support group for Black men that has a virtual option and an in-person option in the Atlanta area, and we're hoping to stand up more of those across the country. Kris leads our prostate cancer and the Black Community Film series events. That's our programming to raise awareness around prostate cancer. Then as a researcher, I engage in our research partnerships. Specifically, we have partnerships in the St. Louis area and the Charleston area and Georgia and eager to engage with other researchers focused on prostate cancer health disparities.
Rich Towne:
All right. Well, thank you so much for being on Talk of the Town, Reggie and Kris. Hopefully everyone who listens to this gets a lot out of it.
Reggie Tucker-Seeley:
Great. Thanks again for the invitation.
