Solutions to Disparity in Lung Cancer Care: 2nd Lung Cancer Health Equity Summit with Dr. Eugene Manley, PhD

Dr. Eugene Manley, PhD, through his SCHEQ (STEMM Cancer Health Equity) Foundation, is dedicated to addressing disparities in lung cancer research, screening, lung cancer care for underserved communities and patients, and STEMM careers.

In the 36th episode of the Everything Cancer Podcast, Dr. Eugene Manley, PhD, joins us to discuss the important work shared through the 2nd Lung Cancer Health Equity Summit: Black and Latino Patients Navigating Lung Cancer - Stepping Stones to Equity

The summit focuses on implementing real-world solutions to improve lung cancer research, screening, care access, and outcomes. Dr. Manley’s mission is to move beyond discussions of inequity and provide a forum for actionable strategies to reduce disparities and improve outcomes.

Dr. Manley aims to bring together healthcare professionals, researchers, patients, and community leaders to share best practices and build partnerships. Topics include expanding screening access, addressing clinical trial diversity, navigating lung cancer, improving access to care, and increasing representation in lung cancer cell lines. 

The importance of sincere and ongoing community engagement and trust-building is discussed. In their conversation, Dr. Manley and Jill cover the critical nature of including diverse populations in clinical trials and research to ensure effective therapies across all demographics.

Dr. Manley highlights in this conversation how the summit is designed for attendees to bring back solutions to their own communities, practices, and organizations. It is intended to foster collaboration and innovation in cancer screening and care for underserved populations. Patients will be empowered and witness living proof there are many motivated people in their corner. 

2nd Lung Cancer Health Equity Summit Registration:
https://tinyurl.com/LCHES

Submit a poster:
https://tinyurl.com/LCHESPoster

Dr. Eugene Manley, PhD, LinkedIn Info:
https://lnkd.in/e-WinBTT

#LungCancerScreening
#EquityInLungCancerScreening
#EquityInLungCancerCare
#EquityInLungCancerResearch
#ClinicalTrialAccess

Transcript

Hello everybody and welcome to the Everything Cancer podcast. We have a very knowledgeable and dynamic guest Dr. Eugene Manley, who has an incredible background and also runs a foundation that he'll tell you more about, but is here to uplift underserved communities into STEMM (Science, Technology, Engineering, Mathematics, and Medicine) careers and also

to help underserved communities get access, improved access to healthcare and cancer treatment. In particular, he is having a summit in November of which I'm really looking forward to the 2nd Lung Cancer Health Equity Summit, Black and Latino patients navigating lung cancer, stepping stones to equity. And this is out of the SCHEQ Foundation. Thank you for being here, Dr. Manley.

Eugene Manley, Jr, PhD (00:55)
Thank you so much for inviting me, Jill. It's an honor to be on your show and to be able to talk more about the work that we're doing and the summit and how we think it'll be impactful for patients.

Everything Cancer (01:07)
Just from a, I've read the prospectus and people will hear more about it as we're talking. I definitely, it will make an impact for individual patients and for patient communities. Absolutely. think patients when they, survivors, when they listen to this will walk away empowered and knowing that people are really working on their behalf to have access better open for them and

and equity actually occurring instead of people just talking about it, which is what you're trying to do here. So tell us about the summit. What drove you to form the summit? And now that you're here in year two.

Eugene Manley, Jr, PhD (01:50)
Well, the summit, you know, the ideal behind the summit is that we really wanted to bring together people that are not just talking about issues that black and Latino and other underserved communities face, but also really solutions that have been created or implemented that are actually decreasing disparities, decreasing inequities and or improving outcomes. you know, we often just go to meetings. If we hear anything, we have a problem. We have a problem.

Okay. Well, what's the solution? What are steps? What are best practices? What can we learn and implement that then we could possibly use that will move the needle?

Everything Cancer (02:30)
Absolutely. Moving the needle is something that is needed. And Michelle Kirschner actually made a post about that last week on LinkedIn, moving the needle as opposed to us just going to meetings and talking about it, but actually putting action behind it. And you're doing this with the summit with sharing solutions.

So what would give an oncologist a burning desire to be at this summit?

Eugene Manley, Jr, PhD (02:55)
So we think of this summit as having multiple audiences. know, while the goal is really to bring issues and challenges and resources to the patients, it's also for those in the workforce to really understand broadly the depth and breadth of disparities, what you can be done to address them, and then different practices that can be implemented. And also we really want to bring together these stakeholders to learn who else is doing the work.

Everything Cancer (03:00)
Mm -hmm.

Eugene Manley, Jr, PhD (03:25)
and from the different networking sessions for them to build potential partnerships so that they can collectively move things forward for their specific area, but also for the broader community.

Everything Cancer (03:35)
And so they can learn things that they can actually bring back into their own practice and start using. Yes. And so that would involve the social workers in those practices and the navigators, anybody who's involved with seeing the patient and the survivor and their loved ones who are there to support them coming through the doors or even just calling to initially get the consultation.

Eugene Manley, Jr, PhD (03:42)
Ideally, yes, yes.

Everything Cancer (04:04)
One of the things we were talking about before we started the interview is the disparity that exists right now with screening for lung cancer.

Eugene Manley, Jr, PhD (04:14)
Yes, so we know that of the other cancers with screening, lung cancer still is at the lowest rate. I think 6 % of screening eligible population is screened. It might be, at least according to maybe the last National Lung Cancer Roundtable Summit, Lung Cancer Screening Summit, it might be as high as 16, so we may be underestimating.

but either way it's still significantly lower than breast, colon, and prostate. And part of the reason that it's low is that, you know, we still don't have broad implementation of screening. The states that have done Medicaid expansion have now allowed more people to be screened, but we still also have primary care physicians, even some medical providers, that do not know that patients with a history of smoking can be screened. The other thing that is very interesting, we're gonna have a talk.

presented by another person is going to talk, discuss how you can develop comprehensive screening programs that encompass other lung cancer risk factors beyond just the stated history of smoking. And so that'll be very, very powerful to help those that are trying to navigate the space. other, this one part of the reason we also have disparities, you know, just beyond just lung cancer disease is that many underserved populations

are not diagnosed, they're not screened early, they're often diagnosed late. They often, and of course, once you are later to stage, the less likely you are able to get resection and more curative methods. So then it just becomes what can they do and what treatments are available? And we know that not everyone gets all of the biomarkers tested that are available and we know they don't all get NGS (Next Generation Sequencing). So once you get

diagnosed late, then it makes it even harder to address the care.

Everything Cancer (06:10)
Absolutely. And that early diagnosis is critical for better outcomes for so many reasons. Can you go into that a little bit, Dr. Manley?

Eugene Manley, Jr, PhD (06:22)
So, you know, initially, I think we had the first screening trials. I want to say there was the Nelson trial and then the National Lung Cancer Screening Trial. And they both showed that if you did lung cancer screening for high risk populations, you were able to, in essence, do a stage shift. So you could catch it at much earlier stage where it was more treatable.

than later, I think now I can't remember off the top of my head. One of the studies compared screening to x -ray and then the other one, I forgot what the other one compared screening to, but it was, I just can't remember. But the comparisons were sealed that if you screened, you could capture much more lung cancer early. And that was the critical thing. And then that eventually led us to the recommendations for the U .S. Preventative Services Task Force.

Everything Cancer (07:11)
Mm

Eugene Manley, Jr, PhD (07:19)
They were updated within the last two or three years. So now they've reduced the age to 50 Reduced the pack year of history and then they still say you have to have still be smoking or have quit within the last 15 years So there's still some holes in that because there are people that

smoked a lot longer ago, but then they're still not eligible based on this time window of when you have quit. So we still have some work to do there to capture those populations.

Everything Cancer (07:45)
And for our listeners, early diagnosis often means that you can have surgery and then be monitored after surgery or have a short term of treatment as opposed to later and where you have a more advanced form of lung cancer that wasn't caught early and

have a longer treatment that may not necessarily have as good of an outcome. So getting it early before it advances into lymph nodes and metastasizes moves to other parts of the body makes a huge, huge difference in terms of not just outcome, but also how your life proceeds after you've been diagnosed. So what are you going to be talking about in terms of

bringing equity into play for people and bringing access into play. What do you see are the conversations that are going to be happening and the solutions that people are going to be able to bring as a result of this back to their individual practices?

Eugene Manley, Jr, PhD (08:52)
I think if we think of some of the things, you we want, can't discuss, we can't talk about all of them if we'd be here all day, but if we talk about some of the, I think key areas we're going to discuss, we're going to talk about the importance of community engagement and building trust and trustworthiness and how, you know, how do you expect to go into a community to do a trial if they've never seen or heard from you? how do you implement?

Everything Cancer (08:57)
Hahaha!

Eugene Manley, Jr, PhD (09:20)
programs or outreach or work with community stakeholders to then have a presence and foothold and then continue and build on that trust. You know, you can't just come in once and have it and then leave and disappear. You have to sort of stay engaged. so, and then we'll, so we'll have them discuss it about what that entails. We'll have some discussions. You know, we often talk about clinical trials. So, but we know that the trial diversity is still very low. And so how do we address that? That means.

Are we looking at how we're, where are we doing our trials? Are we looking at the diversity of our trial teams? Are we looking at the diversity of our trial sites? If you think about how workforce ties into this, which is a key role, do we even have providers that look like the patients with the greatest rate and or most disparities? Cause we typically don't. And so when you don't have those providers that kind of look or have your lived experience,

It's much harder to feel like you're going to be seen, heard and respected because patients can, talk about the bias experience, how they get disregarded or they get victim blamed if they're in a clinic or you may even get, or not be offered treatment based on what they think you can pay or what they think your insurance level is. and so we're sort of, you know, so that was a couple of aspects. And I think the other aspect that we could discuss even from the basic research side, we always talk about the trials, but

What about the materials that we have to help develop the therapies? We know there is a lack of diversity in cell lines. And so we're going to talk about, know, how the, you know, why this lack of diversity in cell lines and, you know, genomic databases like the CCGA and the GWAS studies directly impact sort of then what gets developed and treated and who it impacts. So we'll have some of those robust discussion and then approaches and things that we can do to try to address and mitigate.

these factors.

Everything Cancer (11:17)
That sounds so incredible and amazing. For our survivors who are listening and their support systems, what is the importance of the cell lines?

Eugene Manley, Jr, PhD (11:30)
So, you know, we actually, I partnered with USC University Southern California and FAMU Florida A&M University and we did a study. We just wanted to know how many just cell lines do we have from diverse individuals and lung cancer? And, you know, ironically, we probably would never thought about this 10 years ago, or even when I started my PhD 20 years ago, because it just wasn't even on the radar. And we found over 800 cell lines. Of these cell lines, 200 were from white individuals.

390 were from Asian 300 were either unidentified or captured so long ago. We didn't have the information or they came from places where they don't capture race ethnicity, you know, sometimes they think that is racist, but it's the same token. could say race is a proxy for SDOH (Social Determinants of Health) and people still have environmental issues and challenges they face. So if you still aren't capturing that stuff in the context of where people live, you're still missing stuff.

But more importantly, we had only 30 cell lines across the set that were from black individuals, only 30. And then none were from Hispanic, Native American, Alaskan Native, Native Hawaiian, or other Pacific Islanders. So this is what we have in the literature, or that we can find of all the cell lines that are available. So that means that if there's only one non -small cell lung cancer cell line for a black person, maybe nine small cell,

and we have all these therapies getting developed, this tells us exactly that we have a problem at curation and banking. And this is translating through because then the targets aren't even relevant to the populations. On top of that, if you think about genetics and epigenetics, if you look at patient populations, we even also know, not directly, but even sometimes related in lung cancer is that black populations have...

sometimes different T tumor rotational burden. They have different epigenetic markers. They have times have different immune marker expression. But if that isn't even captured in the data set that we're developing therapies for, then you could have all the immunotherapies for days and then they're still not gonna work on these populations. So then it shouldn't take you getting to post market analysis. we need more black patients to show this trial is effective. But if you thought about really

bringing those in at the beginning, you would not have to come back and do it late later.

Everything Cancer (14:01)
Raising awareness to this because it is incredibly relevant to have a diverse population reflected,

in those studies, reflected in the research.

It is a complex topic. It really is, but it's important. So to our listeners, if your surgeon, your oncology surgeon asks you or your oncologist asks you to consider donating part of your tumor to this effort, consider with what Dr. Manley is saying.

you will be contributing towards this effort of making sure that your population is represented. So please do consider consenting to that.

Eugene Manley, Jr, PhD (14:42)
And I also want to point out, we talked about the ethnic diversity. I didn't mention the lack of gender diversity in the lung cancer cell lines. So in that same set of cell lines, the overall, we saw it was about 2 .6 times more cell lines from men than women. But in the Asian subset, it was seven to one. And so we have a massive representation of cell lines from men, but we know women, the rates aren't that drastically different.

Everything Cancer (14:58)
Mm

Eugene Manley, Jr, PhD (15:12)
we know we look at the population of Asian females that don't have a history of smoking. They have one of the higher lung cancer rates and we still don't know why they have lung cancer. so we really are trying to fundamentally think about what can we do to make sure the stuff is representative and then we have more follow on studies that captured this breadth and depth. So then we get therapies that have a chance to be more impactful.

Everything Cancer (15:37)
Right. Absolutely. And then with access to clinical trials, one of the prime examples I can think of is with the beginning of wide range use of the immune checkpoint inhibitors, we were told over and over, these are rare autoimmune side effects. And in fact, they're not rare. They happen. Almost everyone ends up with some sort of autoimmune side effects.

And to know we really do need to have a more diverse population that enter the clinical trials. so please, when you see your oncologist ask, if you're not offered a clinical trial, ask about it. And there you can look on through the National Cancer Institute, can look at clinical trials, you can advocate for yourself, you can ask about them.

I'm so glad you're going to be talking about this at the summit. And what were you going to say, Dr. Manley?

Eugene Manley, Jr, PhD (16:43)
No, I just happened to catch an email. my bad. was, I was looking somewhere else and I was like, Nope, I didn't mean it. And it was just flashed in my eye. But I just think this is such an important topic. And I think patients also don't realize when you have a diagnosis, you should always get a second opinion. you should always ask for biomarker testing. If not NGS testing, you know, not everyone gets it, even though it should be available, but,

Everything Cancer (16:58)
Yes.

Eugene Manley, Jr, PhD (17:10)
Typically people may only get one to three biomarkers tested the most common mutations, but we have about 10 to 11 biomarkers now for lung cancer and you know, it's really sad that people don't even know they can get tested for them because then it might get them on an appropriate therapy that would delay that tumor growth or slow the even time sometimes completely halted and so really is important to advocate for that biomarker testing and NGS testing. Of course, the downside is the cost.

which is still an issue, but you should be able to advocate for it.

Everything Cancer (17:45)
Yes, the cost is still an issue, but I'm hoping that that starts becoming more of a non -issue as more advocacy happens on the legislative side for coverage for that. And we have a lot of people that are going to our legislative leaders with the necessity for this. For community leaders that are thinking about attending the summit, Dr. Manley, what would you say to them? Why would they want to be here?

Eugene Manley, Jr, PhD (18:14)
I think it's a great place to just learn about the other work that's being done, learn about practices they could implement. We also will have a poster session. So there'll be a great way to learn what the researchers and other community groups are doing in the space. And so that gets you even more at the more granular levels of really people that are at grassroots level that are doing the work. And I.

Think you'll, you'll learn a lot, you'll grow a lot and you'll hopefully develop some partnerships and relationships that will help as you progress in the things that you're trying to do in your specific community.

Everything Cancer (18:54)
Your community leaders have a great chance, as you were saying, for collaboration with other community leaders and a conversation about what's working for them and what isn't. And enter the same conversations as to what's working for you and what isn't. as the goal, one of the goals of the summit is to find solutions that are working for the particular problems they're running into. So I think you have an excellent opportunity here for your community leaders. Absolutely.

And what about your administrators of your cancer institutes, your cancer programs? What do you feel is really appealing to them for this summit?

Eugene Manley, Jr, PhD (19:35)
I think for them, specifically the COE offices is learning what is being done, really learning about the importance of the diversity of the workforce and how that impacts. If you see people that look like you're more likely to believe you're gonna get care, helping them maybe understand even to some level how to measure success of programs or how to even develop them to make them successful and sort of.

than what you can broadly do or even more locally do that may have an impact. And what I want to point out is that a solution that might work in Flint, Michigan may not work in Louisiana or it may not work in rural Oregon, but there may be some threats you can take away that you can take pieces you can implement. So you still have to develop specifically things for the community you're in.

So that's sort of still important to remember.

Everything Cancer (20:34)
Yes, yes. And there's equity issues and lack of access issues in both cities and rural areas that are very significant, that are going to be brought up at the summit and discussed and problems and solutions discussed, identified and discussed and shared for people to walk away with. What would you say to you have an open invitation to patients to attend?

What would you say to them as far as coming?

Eugene Manley, Jr, PhD (21:07)
I would say for them, it's a great event just to see the depth and breadth of people that are doing work that are trying to help them. Awesome. know, depending on where they are, they may not see anyone that looks like them at all. And they don't know where a provider is. They don't know where to ask questions. They don't know where to get help. So the fact that we'll have all these people in one space will allow them to see who maybe they need, or maybe one of their friends or family members may need to.

help them navigate the disease. So I think it's just, it's great for the, it's free and we're still going to try to keep the information at the level that the patients can understand, but still bring this rich depth and breadth of topics across the spectrum that will impact them. Like civilly will have a panel on nurse navigation, which is so critical now, because you know, a lot of people still don't know that earlier this year we had the new CMS billing codes for nurse navigation.

And that used to be such an issue for hospitals because how do you bill for nurse navigation? know, people are doing it, but it wasn't a line item, so they couldn't really recoup money for it. So now that it's billable, we want more people to know that it's a billable code and why that's so critical for helping those patients. Because, you know, can't you often you get a diagnosis, you get a stack of papers and the patient is not going to read it. So if you can get that nurse.

to help them navigate what this stuff means and try to conceptualize things. It'll help alleviate the stress.

Everything Cancer (22:37)
Yes, nurse navigators are crucial. Absolutely, they're crucial. And that's one of the reasons why CMS, they stepped back and saw the effect that nurse navigators had in terms of outcomes for patients. They did so much better. And they really do help patients avoid a lot of the pitfalls and also avoid delays in care, which is really important. So important when you're on, first of all, with being diagnosed and second of all,

when you're entering treatment to make sure you stay on so that you get optimal outcomes and you have a better quality of life when you're done. And when you say it's free, you're talking about your patients that want to come, right? So that, I love that. Could you dive into the prospectus for us somewhat and kind of give us some highlights from it?

Eugene Manley, Jr, PhD (23:28)
So like I said, we, we, we are planning to have the whole spectrum of the care continued from patients through pharma. So we really are brought. So we will have stuff that talks about the needs of patients, patient advocate groups and resources that they can have. We'll talk about stuff from at the basic translational and clinical trial level. So what are we doing in these spaces? what are disparities? What are, how do we address them?

We're talking about the use of AI and imaging and diagnostics and treatment. We'll be talking about, you know, of course, nurse navigation. We'll do an overview of the late of land of lung cancer disparities and what advances we made in treatment and diagnosis. And we'll, you know, we'll have some stuff related to community engagement, talk about traditional community engagement approaches, non -traditional community engagement approaches, because these are both very critical. You know, people just...

Traditionally think if you go to the church beauty parlor barbershop, you're gonna get everyone you will get some people There are still people that are not religious. There's some people that don't even do those go to those sites So you have to figure out what works for that community and you can't just focus on this We're gonna do a solution here and that's all we're gonna get them off that will not happen. So you got to think broadly We'll have some breakout sessions or really talk about that grassroots community engagement. I think really a great session about

e -vaping, e -cigarettes and vaping. You know, people, you know, somehow believe that vaping is better than cigarettes, but what they don't realize is that actually it's much worse because you're inhaling something combustible. We have no idea of all of the contents and it's way more than what's in nicotine and tobacco. And that's already a lot in there. And because it's going more directly deeper in the lungs, you're seeing more popcorn lung.

And, you know, it's just going to be a matter of time before we start seeing more lung cancer cases. And they're probably going to start showing up at earlier ages. and also they're adding additives on top of these excessive compounds. think so many things also contain, formaldehyde and some of these other carcinogens. It's like, that's probably not something that needs to be inhaled. and so, and we're talking about, you know, different partnerships that people can do.

Everything Cancer (25:34)
Yeah.

Eugene Manley, Jr, PhD (25:52)
And, and, know, trial diversity and we have stuff on veterans and then we'll have the surgeons and oncologists and pulmonologists. So really it's a bit of everything for everyone. we have some hospital systems talking about things that they're doing, and we're talking about some insurers and payers and sort of how are they addressing lung cancer, lung cancer screening and disparities. And so we have this in depth of topics and we have speakers.

from all regions of the country. And so we have representation on every panel. We have no all man panels because, you know, it's very frustrating to go to an event and you see a whole panel of six people that look the same. And, you know, is this all we can do for this topic or community? Like we can do better than that. So.

Everything Cancer (26:35)
I like that, I like that a lot. So it is a very wide range of topics. I encourage our listeners, whether you're a provider, you are a community leader, you are involved in a cancer support organization, a patient,

many topics that are being covered by experts. And I congratulate you with everything that you're accomplishing with this Dr. Manley.

Eugene Manley, Jr, PhD (27:01)
Thank you. Yeah. It's been really a labor of love, but also of necessity. Like how do we get information to those that need it most? We have two links. One is for the general, registration, which is tinyURL.com/L C H E S. And then, we'll take early registration through September 29th. And then we have a second link. Simply, if you were a researcher advocate.

nurse et cetera wants to put in a poster. We have a poster submission pages, early poster submissions are due the 29th and that link is, tiny URL .com/LCHS poster. know I made, I made it really, really, really easy for people. but, but, and so that's sort of the idea. So those are the links we hope to have the perspectives on our official website in the next week, but I'm really trying to not.

Everything Cancer (27:44)
Hahaha

Eugene Manley, Jr, PhD (27:56)
post it until we have all the speakers in, because you know, you don't want to go back doing iterations after iterations. So we're trying to wait till we have all the speakers officially lined up before we post it. But it is on our LinkedIn and online.

Everything Cancer (28:01)
Right, right.

So registration will be in the show notes, the registration links and also the links to submit a poster presentation, which I strongly encourage people to do if they're working on something, if they're passionate about a topic with this knowledgeable to pull that together and where they can make an impact for a community, for an organization. This has been an incredible conversation. There is...

You're right, we could talk about this all day without a problem. There is so much to cover. Could you tell us a little bit about the Sheck Foundation, Dr. Manley?

Eugene Manley, Jr, PhD (28:48)
Yes, so the SCHEQ Foundation, which is the acronym for STEMM and Cancer Health Equity is a nonprofit that I launched last year in August. And broadly, our mission is to increase STEMM workforce diversity and to improve outcomes for underrepresented, underserved, and marginalized populations navigating the cancer care continuum. And really this became an ideal kind of out of a combination of my...

Growing up, my lived experience, my experience is navigating academia, and then just things I saw as I navigated nonprofit space and talking to patients. And sort of core things that we see are that diverse scholars do not often see themselves represented early in STEM fields, so they don't even know they can do the fields. And then because they don't know that they can do it, then they don't know they can go into them. So we're one, trying to increase exposure and access and then helping them understand how to apply and get in college.

One area is you want these diverse scholars to understand not just how to navigate their degree, but understand future degrees that they could possibly do, the alternative career paths that they can do, and how to navigate these systems that may not necessarily be designed to let you succeed, but then helping you understand how to conceptualize that so we can get you in the workforce. So then we have a workforce that can advocate for these populations and for research that impacts these populations. And also we get better standard of care with less bias.

the other side of what we do is related to, health literacy and patient education. You know, the one thing I saw a lot of is that we do a terrible job explaining basic medical information, let alone cancer information to the lay public and also to underserved populations. So we're trying to do infographics and representation to break down that complex terminology, and then trying to conceptualize it in the context of cancer and cancer disparities, and then keep building up.

the resources, you know, starting around long. So the goal is so that they at least see themselves can understand things and hopefully eventually be able to advocate for the care they should get versus what they do get.

Everything Cancer (30:57)
That's a lot you're taking care of and it will make, it is and it will make a huge impact. People understanding their care and their diagnosis and their options is critical to them being involved in their decisions for their care and then also understanding how it may impact their day -to -day life. It's really important that they're involved in those conversations and that they are informed to make decisions.

When you read about the bias as you had brought up, it does exist. There's so many studies about how delivery is different depending on who is involved in the conversation. And there needs to be a real effort for that to go away. Infographics will help that.

people being aware that there's a bias, that there's a change in delivery depending on who they're talking with. And they may be completely subconscious, raising awareness of that will make a difference. But the person receiving the information, the more informed they are, the better decisions they can make for themselves and for their family. because care impacts everyone.

Eugene Manley, Jr, PhD (32:11)
No.

Everything Cancer (32:17)
Cancer care impacts everyone, cancer diagnosis and care. It's not just the patient, it's their family, especially if they're the provider for their family or one of their providers. And by provider, mean income earner because we use provider also for healthcare providers. so having really understanding what is this going to mean to me? How am I going to be able to continue to go to work or what do I need to do for my family to be okay?

is really important to be able to have those conversations with their healthcare team.

Eugene Manley, Jr, PhD (32:51)
And, know, and survivorship is a big and understudied area of lung. And the thing is we have all these therapies and now people are living longer, but these therapies cost a lot of money. And I can't remember the stat, but often people go broke within a first year of being on these therapies because they can't afford it. And then you're in medical collection because you can't pay the bills. And then how are you supposed to stay alive if you can't afford the treatment?

Everything Cancer (32:54)
Yeah.

Eugene Manley, Jr, PhD (33:19)
And so often this may be a reason why some people go to the clinic late. don't want to, cause they have to figure out, how am I going to pay with this? It's my insurance going to cover this. What will my insurance cover? What is my deductible? What's the minimum? And so you have 15 other things. So I think some of that's the reason that you get a delay. Part of it is signals. Part of it is the fear of, well, this is going to burden everybody and we're going to go broke doing it. And, and, and that's unfortunate.

Everything Cancer (33:44)
It is unfortunate that people don't have those initial conversations that out of fear, they don't go. And then oftentimes, as you were alluding to, the care is so much more intensive and expensive when a person is more advanced in their diagnosis, as opposed to going earlier when they first have symptoms. But fear plays a huge factor in that.

and a hope that maybe this will just go away if I don't, if I ignore it. And chances are it won't, but there are a lot of resources available to people through cancer institutes, through healthcare organizations and through other means. But the only way you're going to find out about them is having conversations with people, is reading through literature, is talking with the community support.

Eugene Manley, Jr, PhD (34:34)
exactly.

Everything Cancer (34:39)
that's available and also the support that's available through your local and national resources. There is a saying of when there's a will, there's a way. And oftentimes, if you advocate for yourself and you do research or you work with your social worker that's with your cancer institute, you can find a way, whether it's with the pharmaceutical company or

other means, but at least try before you make the assumption that it's not going to happen.

Eugene Manley, Jr, PhD (35:13)
Yep, exactly. And knowing what you can ask for and what you can't. that's like awareness and advocacy. It's critical.

Everything Cancer (35:14)
Yeah. So engage.

Right. I mean, the worst someone can say is no, but asking is what's going to open the doors. Is there anything else that we didn't talk about that you would like to cover?

Eugene Manley, Jr, PhD (35:36)
I think we covered the bulk of it. think we had a great conversation and thank you so much for inviting me to speak today about the summit and the work that we're trying to do. And I will say, while I talked a lot about what our mission is, that's the long -term play. Like we're not going to do all that right away. That is very ambitious what we're doing, but we are still focused on our lung summit is our important thing. And in our infographics, that's sort of our core areas that we're doing initially. And then we'll slowly phase in the rest of the stuff.

Everything Cancer (36:03)
That's how everybody starts is one step at a time. And you already have a lot of momentum behind you and I only see it growing Thank you for your time today, Dr. Manley.

Eugene Manley, Jr, PhD (36:14)
Thank you so much as well. Have a great day.