21 – Overcoming Medical Mistrust, Bias, and Access to Cancer Screening in the LGBTQ+ Community
June 3, 2024

Dr. Scout, Executive Director of the National LGBT Cancer Network, discusses how the LGBTQ+ community faces unique challenges in cancer screening. Dr. Scout highlights the increased cancer risks due to social factors, like discrimination and medical mistrust, and emphasizes the importance of inclusive healthcare provider training. The National LGBT Cancer Network works to educate both the community and providers, runs support groups for LGBTQ+ cancer survivors, and is developing a more comprehensive list of welcoming providers.


Kim 00:08
Hello listeners, your host Kim Thiboldeaux here. Before we start today’s episode I wanted to share an update regarding the podcast. I am honored to have hosted The Cancer SIGNAL for the past year and a half, working with GRAIL and the many guests I have had the pleasure to interview. So it is bittersweet to share that I will be stepping down as host, as I move onto my next professional endeavor. The Cancer SIGNAL will go on, so stay tuned for new episodes with all the great insight and interesting conversations you have come to expect. And thank you for listening.

Today, we are joined by Scout, who is the Executive Director of the National LGBT Cancer Network and the principal investigator of both the CDC funded LGBTQ tobacco-related cancer disparity network and Out: The National Cancer Survey. He spends much of his time providing technical assistance for tobacco- and cancer-focusing agencies expanding their reach and engagement with LGBTQ+ populations. Scout has a long history in health policy analysis and a particular interest in expanding LGBTQ+ surveillance and research. Scout, welcome to the show.

Dr. Scout 01:18
Thank you very much. I’m happy to be here and happy that you’re focusing on the topic.

Kim 01:22
Excellent, excellent. Well, let’s start by telling our audience if you could, a little bit about the National LGBT Cancer Network and the work that you do there.

Dr. Scout 01:31
Yeah, absolutely. So, we really focus on educating our own communities about the cancer disparities that we face, and also some of the challenges that we just face that are different than the general population. We also do lots of training of providers to try and make sure that they can do a better job engaging with our populations and treating us with dignity.

And then as well, we also work a lot with the national mainstream cancer organizations, the advocacy organizations, to make sure that they’re including our issues in the work that they’re doing across the space. So, we do that in a lot of different ways you heard a little bit about, we have a big CDC project with, through that, we run technical assistance to many state departments of health around the country. We are training endlessly, I think, at least for the last months of last year once a week I was doing a training at least. And I’ve already done one and a half so far this week, so I’m meeting my quota.

And then we also are working to try and build the survivor resources that are out there. And after we ran that survey that you had mentioned, Out: The National Cancer Survey, which is the largest one that has existed of current cancer survivors, we realized one of the things that people were really saying they needed was support groups where they could feel welcome, and where they could talk about issues related to being queer and related to their cancer or have it just not be an elephant in the room that they’re worried about. So, as a result of that, we’ve started support groups three times a week online that anybody can come to. So, we’re very much just in trying to kind of build that toolbox of resources, build the evidence base of information, and then build the education level of the whole cancer diaspora that is engaging with people.

Kim 03:07
Terrific, great, great mission and a great background there. Thank you for, level setting for us Scout. So, I’ve read some statistics and seen through some of your materials that in some instances, the LGBTQ community faces a higher risk of cancer. So why? What are the increased risks for cancer for the LGBTQ community?

Dr. Scout 03:29
You know, a lot of people I think one of the first things is, like, well, it’s not a biological difference. But what we realize is that it’s estimated that as much as 80 to 85% of our health risks are from social factors, not biological factors. And social factors is what we have plenty of. So, this really is a game of discrimination and social exclusion.

And related to that, the actual things that end up coming out as risks would be like, one of the things I know we’re going to talk a little bit more about, is combustible tobacco use. That is something we have, quite unfortunately, elevated rates around. And that has been linked with so many cancers. Over the years, you know, we understand that about a third of cancer would just disappear if we stopped smoking cigarettes. And so the fact that we’re doing that more, which all has to do with a response to discrimination, particularly when we’re young, really affects our course.

But then another big factor we have related to this is medical mistrust and our concern about engaging with the healthcare system. So we can talk about more about how that plays out. But it means unfortunately, that for many of us, we are more likely to get our screenings late, we’re more likely not to have that medical home that encourages us to get the screenings, you know. It’s like having the mechanic that tells you “You have to change the timing belt on your car.” It’s such a, you know, you have to have that medical home to say, “Now’s the time to start colonoscopies,” and we have challenges with that.

We also have some other associated life factors, which may create increased risks, like for example, anybody who’s HIV positive, is not going to clear HPV in the same way that other people will. And we know that about after 10 years of that, things like your risk for throat cancer, anal cancer, really start to then go up. And but then those are complicated again, by discrimination. We know, I was, I was actually just talking with a national organization that could provide you know, platform with free advertising for an anal cancer risk campaign, but as they talked about, they’re like, but providers don’t know how to screen for it right? So, should we even encourage the patient, you know, the people at risk, to go see their providers if the providers don’t know how to do an anal pap smear, or don’t know who to even send it to to get it actually analyzed. So, there’s all these layers of complication, which all stem from discrimination. So, that should just give you some examples of why we know that our population, even if we are surviving cancer, unfortunately, demonstrate much less satisfaction, much less optimism related to our lives than the general population does.

Kim 06:01
Yeah, and in a few minutes Scout, I want to dig in a little bit more in the work you’re doing on both the provider side, and the sort of consumer and patient side, because I know you’re working on both ends of that, but let’s dig in a little bit first, on that CDC study. I know that the study was really looking at tobacco use in the LGBTQ community. A couple of stats that we saw, you guys released some of the findings. In 2021, LGBT adults used commercial tobacco at a rate of 27.4% as compared with their cisgender and heterosexual counterparts rate of 18.4. So 27.4 versus 18.4. I also saw on that study, that transgender middle schoolers, middle schoolers use tobacco at a rate of 9.1%, while their cisgender counterpoints, counterparts used it at a rate of 3.8%. So almost three times as high. Talk a little bit more about the study about this trend that we’re seeing in tobacco use in this community and how you guys are tackling it.

Dr. Scout 07:03
Yeah, well, the, really disturbing thing about that is tobacco is such a deep held addiction, that, that if you see numbers that are different from the general population, and in any other population, you’re probably going to have to apply a lot of different resources, a lot of different ways in order to get rid of that disparity, right. And like, that first one you quoted was about 50% higher use of combustible tobacco among our population, again, when that’s, you know, equated with so many cancer outcomes, we’ve got such challenges there. And also remember that most all smokers are starting as adolescents. So, it is relevant to that issue of the trans, you know, middle schoolers and things like that.

This is a game where you, if you make it to the age of 20, you’re not likely to ever get addicted to nicotine. But most all of that addiction happens in those pediatric years. So we’re, I will say, we’ve been watching these numbers for a while, that disparity, the good news is, it’s gone down over time. That is the very good news. It’s even gone down a little bit more since that 2021 number that you’re talking about. But an interesting facet that’s new about it, is it’s starting, the inflection is starting to change, and it’s pieces that are starting to go back up. How is that? Because we’re now measuring not just cigarette use, but also things like vaping, and e-cigarettes and stuff like that. And when we added those numbers in for other tobacco products, we’re starting to see our disparity go back up and go farther away from the general population. And so we’re really concerned about this idea of all of these new e-cigarette products, alternative, alternative tobacco products, things like that, that are using flavors. And they’re using flavors to, you know, if you listen to tobacco industry, they say because of course, you know, middle aged people really need those to get off combustible cigarettes.

But the sad news is, the data shows us that about a third of our queer youth are now vaping and getting newly addicted to nicotine, all using these flavors. And if you’re not familiar with them, they’re flavors like Cherry Starburst, Captain Crunch, you know, birthday cake, things like that, which seem very youth focused if you just even listen to the names of them, right? So it’s really kind of a game of, a shell game of, what should you be looking at? Yes, you’re right. We think that they could reduce risk for those, you know, middle aged folks trying to get off combustible cigarettes. But is the tradeoff that a third of our youth are getting newly addicted to this?

Like, I think it’s like heroin, you know? Heroin has an administration problem with needles. But if we had pill heroin all of a sudden, we still wouldn’t let our youth near it, right? And yet, unfortunately, the outcome right now, is that. So we’re doing a lot of work on trying to get those flavors, particularly menthol, which is disproportionately used by queers and Black folks and practically all of the different racial and ethnic minorities, out of our ecosystem. So that we reduce that level of kind of siren song for the youth for a long-term addiction that we know that they’re going to struggle with for a lot of their life.

Kim 10:03
Yeah, yeah, definitely a challenge and the challenge continues to build with the vaping. You know, as you’ve sort of outlined.

Dr. Scout 10:09
I will say we also have a new program that we’re just about to start where we are going to, luckily we got a big product donation of nicotine replacement therapy, and we are starting a program where we’re going to be working with community centers, helping give people support specifically for cessation and giving them free nicotine replacement therapy to help them move beyond it. So you know, on every end of the spectrum, whether it’s, you know, the 12-year-olds being enticed by birthday cake, or whether it’s, you know, the 65-year-olds trying to finally get to that cessation attempt that works, we’re trying to provide a little bit more support, so we can level that playing field.

Kim 10:42
Yeah. And I love the way that you’re connecting very grassroots, very much at the community level. I want to go back, speaking of that, I want to go back, Scout, to the work that you’re doing in educating those working in healthcare, really the providers to provide inclusive care to the LGBTQ community. You talked a little bit earlier about, touched on sort of the training. Talk a little bit more about that and other ways you are achieving this sort of provider education.

Dr. Scout 11:05
Well, one of the things is we’ve worked with, with The Society for Gynecologic Oncology for practically a year to develop what is, I think the biggest, most involved existing standing training program, which is freely available to all. It is eight modules online, it’s enduring, so you can just take it at your own pace, and it’s, you know, kind of the latest in the communication development stuff for training, so you won’t be bored in this training like some of the more static, you know, PowerPoint trainings have been. And that is, the first five modules are for anybody who works in the cancer field, whether you are a front desk staff, or whether you’re, you know, an oncology, radiologist specialist. And then, the last three are specific to people doing trans care, for GYN/ONC specific trans care. So those first five, anybody in the world can take, and we encourage you to go to our website, or The Society for Gynecologic Oncology website, and learn more about things.

But, we also know from our in-person trainings, that there is a lot of interest right now from the provider community to figure out what they are, and aren’t, doing to be welcoming. And unfortunately, as much as they’re interested, they don’t yet have the skills to counter some of you know, their, preconceived notions. So, whether that’s just as simple as, “I don’t know how to react to someone when they come in and say that ‘they’ is their pronoun,” right?

Or whether it’s this fear, you know, like, one of my friends walked in, and, you know, he, he knew it was a case of cervical cancer. He [the doctor] walked in, saw the couple and talked to the woman and said, “Hey, you know, what’s going on, you know, let’s check in on what’s happening here.” And that person was like, “I don’t have cervical cancer. It’s my partner here, you know, who’s a trans guy with a cervix.” So you know, those, kind of all those ways that you can stumble.

Or you know, another example, one of my friends actually realized when she got her cancer diagnosis, she’s like, “Oh, wow, I don’t want to be facing something that could be life threatening, without being my authentic self.” And so she realized, then she was going to transition in the middle of cancer care. And so she became her authentic and real self because she’s like, “I’m not gonna go out on this note,” right? Not wearing a, you know, a mask. And but, as she points out, she sees seven people before every chemo appointment, she sees seven people before she gets to the chemo at the eighth person. And all those first, out of the eight people, seven of them misgender her. So she gets those seven times she gets those negative medical interactions. So those are the types of things we want to give people, the knowledge base and the skills base. And what we usually find is they’re mostly afraid because they’re confused. Not that they don’t want to do a better job. They’re just confused. So we want to give them the base of education so that they can understand what they should have as basic skills and then what they don’t have to worry about and they can go to Google for if it comes up.

Kim 14:00
Yeah. Wow, that’s terrific. Scout, I want to go to sort of the flip side of the issue and talk about what your organization, The National LGBT Cancer Network, is doing to help LGBTQ individuals find care from healthcare professionals who are knowledgeable with the needs of the community, and are, safe people that that the community can entrust with their health care. What guidance do you give to the individuals?

Dr. Scout 14:25
Well, I will say I’m excited about a project we have emerging right now. We have always, for many, many years, we’ve had lists of welcoming screening providers, and then a list of welcoming care providers. But I will say to be honest, those got a little, they were a little 1.0. But we’ve now been working on a new project based in Manhattan, that we’re starting to roll across the whole country, where we updated and revised our guidelines of what should be a welcoming provider. We’re doing an assessment of all of the cancer providers that we can find in Manhattan to figure out where they stand on kind of that, that level of how welcoming they are. And then we’re going to be introducing a Gen 2.0 version of the list, and then as we do that, we’re going to be opening up nationwide too. So this is going to give us much more capability, whereas before we kind of relied on us assessing every single provider, that doesn’t scale to the national landscape very well whatsoever.

Now people are going to be able to, you know say, “Hey, I had a really good experience with this provider or with this system.” Or they’d be able to check in and say, like, “Hey, I didn’t have as good of an experience. So maybe you need to take that person off of it.” So it’s going to be a lot more, kind of community powered and we are working right now on rolling out the 2.0 version of that. So you should see that coming a little bit later this year.

Kim 15:34
Sort of the power of crowdsourcing, right, on this specific topic?

Dr. Scout 15:37
Right! Amazon taught us the power of five stars, right?

Kim 15:41
Absolutely. Absolutely. Now, that’s, that’s terrific. Scout, I know, in 2020, you launched Out: The National Cancer Survey, a survey for LGBTQ cancer survivors. What did you learn from the survey? And is this something that’s going to repeat? Or how do we continue to learn from that data?

Dr. Scout 15:58
It’s interesting, I think our dream was that the next one we do was actually a caregiver survey, because there were so many people who reached out to us then saying, like, “Can I answer? Because the person that I was a caregiver for isn’t here to answer for themselves anymore. Please let me say something.” And also, because sometimes the caregivers are able to see a bigger picture, right? Like when you’re discriminated against, it’s almost healthy to say like, “No, no, I wasn’t,” because that just says you have more power over your world, right? But that person who is fighting for you sometimes is the one who’s more able to say, “Oh, yes, they were. This is what went wrong,” right? So, we’re actually hoping that we might be able to come out with a caregiver survey pretty soon. And then after that, we absolutely will be re-running this one.

But as far as what we learned from it, there was a lot of information. We were happy that a lot of people did talk about being comfortable in their cancer care, practically more than we guessed. And so that was, that was really great news. But of course, whenever you look at any of the underrepresented populations in the whole queer umbrella: trans folks, bi folks, folks of color – anything like that, that news gets substantively worse. And we were really concerned about the number of people, the great percent of people who said that they could not find any LGBTQ tailored resources for them. Whether that be support groups, whether that be information, whether that be things in their, you know, follow up care plan, anything like that. So we’ve been on kind of a tear, to work with a bunch of other organizations to be like, “Look, please don’t wait for us to make all these things.” Everybody let’s share the load, you know, everybody collaborate with us, work with us, share with us, but let’s all kind of create more resources so the toolbox can be deeper for people to do this. And a good thing I will tell you actually, that’s about to come out, is we’re still working on our biggest analysis paper, and it just got accepted for publication. So we’re very delighted by that. And then big news that it’s going to come out with is something that I’m happy is fixable. So our top line message we got out of the survey is that, if you rate your provider’s office as very welcoming, as highly queer welcoming, you are almost seven times as likely to report being highly satisfied with your cancer care. And that’s exciting, because the first piece of that is something we can all change. It is not flying to the moon; it is easily fixable. And that would create such a different trajectory for us getting to that satisfaction outcome.

Kim 18:25
Yeah, wow. Fantastic. Looking forward to continuing to track that data. Really helpful and enlightening. You touched a little bit earlier on the, the fairly new support groups that you’re providing, I think we certainly know that people impacted by cancer: patients, caregivers, family, often do participate in support groups to get them through. And, oftentimes you see groups that are connecting, you know, young women with breast cancer or other folks who are like you, right? So tell us about the unique groups that you guys have launched and what kind of feedback are you getting about those?

Dr. Scout 18:57
Yeah, so we are running groups three times a week, every single week, right now, come, you know, come ‘blank’ or highwater. Basically, we will be there as the support group for you. And it’s really, it’s been very interesting and, moving, being in that, in those rooms, basically, because what we do see, and we knew it was the case, is that some of us are coming to the table with less social supports. Our family is not accepting us, you know? One of, the first times we ran a survey, one of the most profound quotes that came from it was from a woman who talked about telling her mother that she had cancer and was going in for surgery. And her mother’s reaction was literally “Good – comma – I hope you die,” because that person was having such a challenge with the fact that their daughter was a lesbian.

And so we know how this plays out. That means we do not have some of the social supports that the general population has, whether it’s that you don’t have as many friends who support you, whether people at work aren’t you know, don’t even know that you’re gay, or whether it’s that you are estranged from your family of biological origin. And we really see that in the groups, we see people who literally have a support team of zero. And, you know, we know what it’s like to get a cancer diagnosis. You’re suddenly flooded with information, and you need that support team to help you figure out how to navigate it.

Not even counting, you know, your insurance company, you know, saying no to that procedure, when you need to go through the whole, you know, wait, let’s, let’s figure out if we can change that. So, for all those reasons, when we encounter these people when they have a support team of zero it’s sad for us, but we’re really delighted that we can do some little piece of balancing that. Giving them space in a room where they can talk about their issues, whatever their issues are. Whether it’s that, you know, “I was given no information about sex after cancer,” or that “I have a support team of 20, and yet I feel not heard on this issue,” or “I have that support team of zero,” it doesn’t matter, you can come to the table. And, you know, we hope actually to continue building these out and offer them for very specific subpopulations. Right now, it’s, it’s a little bit of a mélange, but people love, they develop amazing relationships, even with each other being in those rooms.

Kim 21:14
Absolutely. Absolutely. Well done. Really great to hear. Scout, you talked a little bit around issues of trust between patients and providers, trust in the community and that sometimes, the sense is that that is maybe preventing folks from getting the proper cancer screenings. You know, whether it’s MCED, whether it’s, you know, mammography, colonoscopy, that folks, maybe because of the breakdown in trust, aren’t getting in there and getting those screenings and catching cancer early, when it can possibly be cured. So, is that in fact what you’re seeing with some folks in the community? And what can we do to bridge that?

Dr. Scout 21:49
Yeah, it’s a great point that, you know, I’ll just use a personal example here, that, as well resourced as I am, as highly educated and as highly motivated as I am on this topic – to be perfectly honest, I am often late on my own cancer screenings. At the same time, I’m standing in front of a huge audience and saying, “Please do a better job with this,” right? But think about the trajectory of it. Like, I do have a provider that I trust, right? But all that provider has to do is say, “Hey, please go get a colonoscopy,” or something like that, and now the place that she refers me to for the colonoscopy is a set of, you know, 35 providers and a big colonoscopy shop. And as a trans person, I keep thinking, is today the day I feel like being potentially disrespected while naked? And the answer is always no.

So, how do I figure out that that provider shop might be trans welcoming, trans supportive, might treat me with dignity? The unfortunate truth is, for too many medical professionals right now, they’re kind of focusing on getting their providers trained, but they’re not focusing nearly as much on telling us, in a way that we can figure out from our, you know, our apartments or houses, it’s safe to go here. Because, you know, I’m in a very wealthy state, and they may have trained their providers and my local shop, but if I can’t figure that out from here, it’s super easy to just be like, “How about tomorrow instead of today?”

So, we have to remember that there’s that factor, whenever we go to any referred specialist, it can really slow us down.

Kim 23:15
Great. I really appreciate that, that perspective and that background. I’m sorry, we’re coming to the end of our conversation.

Dr. Scout 23:24
No, it’s okay. You told me to be short and I keep yammering on!

Kim 23:26
No, it’s fantastic. I have so much more I’d like to talk about. So, hopefully we can have you back for sure. But as we do wrap up, Scout, anything else you want our folks to know, our listeners, about the National LGBT Cancer Network? Where can, where can folks find you? What’s the website? I’m sure you’re all over social media, any other things you want to announce any, launches happening? You know, give us a wrap there?

Dr. Scout 23:47
Well, the big thing is, cancer-network.org actually goes to the website. And also know that we give away lots of our resources, including things like tailored, tailored outreach materials. We’re actually building a bunch more of them this year, so we expect to be, we have a new kind of campaign to lean into that. And you can take all those things and put your logo on it as long as you decide to sign up to be a free member.

So, we are not about, you know, this is not about us, this is reaching our people is the real main goal. But as well, we also if you’re anywhere in the provider space, we are about to come out with a toolkit we’ve been working with seven of the NCI designated cancer centers for the last year about steps to become more welcoming. And we’re taking all the lessons from that work and putting it into a toolkit which should come out in about three more months. If you’re any place that reaches the queer communities, we also have you get on our listserv. We do things like, you know, run a webinar three months before Pride about how, what some tested strategies for outreaching at Pride. And then of course, if you are at risk in the community for cancer or dealing with cancer, then we have more specialty information pages too. So, feel free to wander through that. That’s a little bit of the hint of some of the things we’re excited about coming up this year. But you know, there’s a lot of work happening. So it will always be even more than that to come.

Kim 25:03
Wonderful! Well, congratulations on all the amazing work that you’re doing to support this important community. And I really appreciate you joining us for the show today, Scout.

Dr. Scout 25:12
Thanks so much, Kim. I appreciate it.

Kim 25:14
This is The Cancer SIGNAL presented by GRAIL. I’m Kim Thiboldeaux, please rate and review our podcast. And be sure to subscribe to learn more about the impact of early cancer detection on future episodes.