Episode 11: Cancer and the LGBT Community — A conversation with Scout (MA, PhD) Executive Director of the National LGBT Cancer Network

Episode summary written by Francesca Jacklin

In this week’s episode, Dr Bahijja has the opportunity to discuss cancer screening risk and healthcare disparity in the LGBT community with Scout, who is the Executive Director of the National LGBT Cancer Network in America and the principal investigator of the Centres for Disease Control and Prevention (CDC)-funded LGBTQ tobacco-related cancer disparity network.

Photo provided by Unsplash

(Dr Bahijja): Hello Scout, thank you for joining us today on Monday Science, we are very excited to have you on the podcast. I wondered if you could first tell us a little bit about yourself?

“Absolutely, I’m very happy to be here. I am currently the Executive Director of the National LBGT Cancer Network, and I have been working in cancer, tobacco, and LGBTQ+ health disparity for my whole career, which is a longer than you might think! I’ve been working since around the mid 90’s on national health disparity related to queer folks, and even before that I was working in civil rights related to queer issues, so I have a long history of hopefully helping some change come about, and certainly speaking up and saying “what about us?”.”

(Dr Bahijja): That’s amazing, and if you don’t mind just clarifying what health disparity could mean, just in case some of our listeners may not understand the term.

“Yeah, when I first talked about going back to school, my mentor said I should think about studying LGBT health disparities, and I thought why would we have disparities? We’re not biologically different from other people. But now I understand how naiive that was because we realise a certain amount of our health is caused by biological factors, but an even greated amount is caused by behavioural and emotional factors, things that can be influenced by your outside world. Biology is a piece of the equation but almost the smaller piece of the equation. Health disparities are when any population has a systematic trend that differs from the general population in their health. Usually, health disparities are popultations that have experienced discrimination, and that’s refelcted then, for example, African-American men are more likely to die of heart attacks than white men might be. So that’s a health disparity, and usually, when we dig down and find out why that’s the case, discrimination is at the core. In that same way, the LGBTQ+ community, which of course overlap all of the different populations that experience discrimination as well, we have a pretty systematic set of health disparities that we experience. As my mentor was saying, we should research this and you should go back to school and get your PhD in it. I realised there’s a world of interesting information there and a world to dig into, and we’ve only scratched the surface thus far.”

(Dr Bahijja): Yeah thank you for that, and I think the intersectionality, the complications that can occur when you have all these different things that you have to take into account, and wanting to get equal access to healthcare is a challenge. And it’s a shame that we still have to talk about this in 2020.

“I mentioned that I worked in civil rights and I was the co-chair of the largest LGBTQ+ civil rights march that’s existed in the United States at least, in 1993. And I would say that we had a recent supreme court decision in the US to help give us employment protections, but it’s really sad to thik how many years after 1993. You know, our wish list of equality related things, and we still haven’t gotten many of them. Progress here is really slow, on these important issues.”

(Dr Bahijja): Before we get on to the main topic, I’d like to ask you to clarify terms, so that our listeners have an understanding of what we’re talking about. So firstly, could you explain what LGBTQI stands for?

“Yeah so we’re talking lesbian, gay, bisexual, and those three things are usually considered sexual oritentation. Transgender is considered gender identity. Q is often referred to as queer, which is kind of an umbrella term, it could mean any one of those things. Q sometimes also means questioning, which is particularly appropraite for youth… And then I is intersex, and sometimes intersex is referred to as disorders for sexual development, but that’s a very distinct phenonema, a biological or genetic phenomena that is something that is very measurable… LGBTQ are more mental, emotional based so there is no kind of dipstick test for it, right? I’ll explain a bit more about transgender too. So at birth, most of us are assigned a gender, which is, they are looking at your genitalia, and saying from your biological manifestation, you are assigned either female or male… As we grow into emotional, psychological, fully realised beings, some of us realise that it doesn’t fit. There are a couple of different ways we can think about that. One would be ‘hey those two boxes of male and female seem fine, but I’m in the opposite box’, or ‘hey, those boxes don’t seem to represent my reality, so I’m going to say that I’m somewhere outside those boxes’. People who would not fit equally into those boxes might represent themselves as gender nonconforming, another way to say it might be non-binary. And then people who are subtly different from what they were assigned at birth, could call themselves transgender. Sometimes transexuals are people who identify as the exact opposite box, but that could be flexible too… But basically, whenever you see someone where their lived experience, their true gender, which is how they represent their experience of masculinity, femininity, and all the combinations thereof, in their mind, and their behaviours, and their dress and in the world, doesn't;t fit that M or F that was given to them on their birth certificate, that person would usually call themself a variant of transgender…”

(Dr Bahijja): Could you just clarify what the term cis refers to?

“Yeah it’s just the opposite of trans, so if that gender you were assigned at birth still fits you, you’re cis, no issues, on you go. If it doesnt’ fit you, so I was assigned female at birth, that’s not my experience, so it didn’t fit, so I’m trans.”

(Dr Bahijja): Thank you! I wasn’t aware that the LGBTQ community could potentially be at risk of different types of cancer, so could you explain what the risks are, and highlight any cancers which have the highest risk in a general sense?

“Absolutely. So first of all, to tell you this story, let me tell you what’s missing from the story, and why it’s missing. As an example, we have seen a lot of data coming out recently showing how African Americans, indigenous populations, and lat-mex people have higher rates of disparities relating to COVID right? This has been really insightful and helpful data to help understand the population. But what you don’t see is anything related to LGBTQ+ impact relating to COVID. Why is that? Because our data is usually not collected. Unfortunately, fundamentally, those data are usually derived from hospital records, but when we go to hospital, we are kind of forced to stay in the closet. If we wanted to be able to tell someone that hello, I’m gay, trans, whatever I feel like, we can’t, because they don’t usually ask. And since they don’t ask, it seems like a small thing, but it means that we don’t have a lot of outcome data, like cancer outcome data. So what we do usually have is risk data, and a very small amoutn of outcome data. With the risk data, we usually see the titanic heading for an iceberg, there’s going to be a problem. Know what I mean? So risk data shows when there may be a problem ahead, and maybe we can turn around the iceberg, but there could be an issue right? So risk data helps show us what’s likely to happen, and in public health it’s called a public health case statement, where we anticipate something’s going to happen. So, that being said, most of what I can tell you is where we have data showing what’s likely to be the case. Until we start collecting outcome data, I can’t yet show you the proof that it’s happened, because we are forced to stay in the closet.

“So, that said, if there is one take away, if you ever have anybody ask you if you’re queer on a medical record, be happy about it, because that is one of the most powerful sets of questions that can exist, to try and help LGBTQI+ health disparities and move forward. It’s just asking on intake, if we’re queer or not… What we have is a huge disparity, people don’t realise epidemiologically it’s the number one thing affecting our population. If you think of LGBTQI health disparities, what comes up in your mind, in terms of risk factors?”

(Dr Bahijja): I’ve been trying to think what I think would be a risk factor, and in all honesty I can’t, because I don’t want to cause offence.

“What about general health issues, what do you think of those?”

(Dr Bahijja): I would say mental health.

“Yeah, yeah, and probably HIV too? Absolutely, and that’s what most people think. But what we don’t realise is the number one thing taking years off our life is actually smoking. As an example, in the United States, we’ve got about half a million people who are LGBTQI+ who are HIV+ and in comparison, we have about 3 million smokers. And smoking pretty consistently kills people who smoke. You realise now that from a numbers standpoint, tobacco is our big problem. And we don’t realise it, but it is related to over a third of all cancers. They would just disappear if smoking stopped, so it’s a pretty toxic interaction with cancer. We not only use cigarettes at a much higher rate, we also use e-cigarettes, and menthol use. Across the board, if there’s a smoking disparity to be had, we usually see it clustering in our population.

(Dr Bahijja): So when you break apart the LGBTQI and I suppose, taking into account that there is not enough data because of something as ‘simple as a form’, right? Because it’s an admin — why does it always come down to admin?! But actually, I guess with my next question, and I don’t know if there is an answer to this right now — do you have any specific cancers that are related to, for example, transgender people, or maybe in your work with tobacco risk, have you noticed any trends?

“That’s a great question. First of all, there is among gay men, trans women, and bi-men, a big issue relating to HPV. And HPV is related to a lot of cancers, and specifically anal cancer. One of the things that people don’t understand is that there is an anal pap smear that you can do as a test for anal cancer, but have we heard of any guys or trans women getting Pap smears? No we haven’t, because when we go to the doctors, and talk to them about this, most of the doctors don’t know how to do it. Anal cancer, especially in gay men, trans women, and bi-men, has been labelled an epidemic, because it’s such a big problem. Doctors don’t know how to screen for it, it’s rampant in the population, it’s very related to HPV, and that’s not the only cancer related to HPV.”

(Dr Bahijja): And what is a Pap smear? Is this a case of, we need to create awareness and then advocacy and education so that there is more training on how to do the pap smear. Is it difficult to do?

“…I have no idea how it’s actually done, but what I do know is that we need to make sure the doctors are actually trained to — doing the pap test is actually the easier part. Getting it read accurately is the challenge, and getting the doctors to realise it should happen is the challenge.. There are layers of training there that are right now just missing from the healthcare system.”

“The third big thing is HIV cancers, which also tend to cluster around the same populations of gay, bi-men, and trans women. But if we’re talking about what affects trans folks more, it has a tendancy to cluster with all the LGBTQ+ impacts, and has a tendancy to be related to HPV, HIV, or tobacco use. The fourth kind of silent problem in the room, is that it’s pretty likely that we will not be getting healthcare as frequently and appropraite cancer screenings as frequently as we should. My partner, who’s sitting across the room from me now, despite the fact that I run a cancer network, she had to drag me tooth and nail to get a dermatologists screening for something suspicious on my back. Did I want to go find a new dermatologist? Did I want to go explain that I was trans, did I want to you know, tell everybody I was trans, have you ever served any trans people, you know, and then stand naked in front of them? Heck, no! Finally she took me by the scruff of my neck, and it was cancer. So now multiply that by people who don’t happen to be running cancer organisations, and you can see that going to a specialist to try adn get cancer screenings — for some of us, it’s the last thing in the world we want to do, because we have not had the acceptance by healthcare providers.

(Dr Bahijja): Thank you for sharing that, and I hope you’re okay now.

“It’s fine yeah, it was one of those snip and go cancers.”

(Dr Bahijja): That’s good. You’ve just highlighted, I don’t know in terms of in America sort of what the screening process… I’ll speak about the UK, sort of what I know. So at a certain age, you’re supposed to get a smear test for cis women, and I guess it would be trans men potentially, if they haven’t had surgery. There used to be back in the day, it used to be if the person was a virgin or not. So they would assume that if they’ve had sex, they need to have the smear test. If they haven’t had sex, they don’t need to have it. You get a letter from the GP saying that you need to come and get the smear test. And if the smear test is fine, then you just get a recall every three years. For men, I think in terms of prostate checks, that’s only really done over forty years, is when they get called to have a check. Prior to that, it’s just information on checking your testicles, your breasts. So is there something similar like that, a national call for screening, in the US?

“Actually there isn’t. There are medical protocols that you can look up, but there isn’t something simple and easy on when you should advise trans folks on when they should get their different kinds of screenings. It’s a very specific set of surgeries as to whether you still have a cervix or not, kind of thing, and gender conformation surgeries may or may not affect that. If you are a trans man (that means you were assigned female at birth) and you have top surgery, you still actually have breast tissue after the surgery that is still at risk for breast cancer. Likewise trans women, who are taking hormones also have breast tissue that is also at risk of breast cancer. It is a little bit of a patchwork of risks, but there is no simple, easy place for a doctor to find that advisement. That means that too often, and in addition, lots of doctors are prodded by their software — this person is this age, they’re now ready for their blank. There was a small clinic in Canada, where they did a study of their trans patient population. They actually found out, I may mislabel these slightly, but the trans patients were 40, 50, and 60% less likely to get a breast, cervical, and anal cancer screenings (they may be in reverse order) than the general population. Okay, we can understand why trans guys are less likely to get breast and cervical screenings because the protocols are not prompting the doctors to do that because they’re listed as male or female under their health records. But why are trans people less likely to get anal cancer screenings? That’s not dependent on the protocol! To me it’s obvious, because in the same way the trans patient doesn’t want to go to the provider to get this done because we’ve had such problems with our providers. But for them it’s like, it’s not just the protocols, we’ve got a deeper problem here…”

…To hear the full conversation, listen to episode 11 of our Monday Science Podcast on Spotify or Apple Podcasts.

Thank you to Scout for his amazing insight into the disaprities and challenges faced by the LGBTQI+ community in healthcare.

If you have any questions you’d like to be answered by Dr Bahijja, feel free to send them in via the website chat, or email MondayScience2020@gmail.com. You can also send us your questions as a voice message via
https://anchor.fm/mondayscience/message. We love to hear your thoughts!

Additional information available on the Monday Science website (https://mondayscience.wixsite.com/podcast/episode11)

N.B. If you’re a virgin — meaning you haven’t had sexual (vaginal) intercourse — you may still have a low risk of cervical cancer, but you can still consider testing. Please consult further with a healthcare professional.

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