Podcast "Let's Talk Cancer": Inclusive care for LGBTQI people

In the latest episode of Let's Talk Cancer by UICC, Mandi Pratt-Chapman from the George Washington Cancer Center in the US sheds light on the microaggressions and other barriers faced by LGBTQI community in accessing cancer services.

Lesbian, gay, bisexual, transgender, queer and intersex (LGBTQI) people may have a higher risk of getting cancer than those who identify as heterosexual or cisgender.

This can be due fear of stigmatisation or negative experiences with healthcare providers, which can lead to a delay in care, as well as lack of knowledge about LGBTQI-specific health issues on the part of providers. LGBTQI people also often suffer discrimination, either overtly or in the form of microaggressions – subtle yet harmful insults, assumptions and prejudices  – that can lead to behaviours known to increase cancer risks, such as drinking and smoking.

Mandi Pratt-Chapman, Associate Center Director for Community Outreach, Engagement and Equity, George Washington University Cancer Center in the US, speaks with Cary Adams, CEO of UICC, about the experiences of these patients and ways to tackle stigma and discrimination.

"I think in the long run, we will get to where we need to be. But right now, I think we're in a regressive pushback period that's driven by fear. What's going to change the health outcomes is the level of acceptance and social support and ability to be yourself."
– Mandi Pratt-Chapman, Associate Center Director for Community Outreach, Engagement and Equity, George Washington University Cancer Center

See podcast transcript below

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Podcast transcript

Cary Adams: Welcome to Let's Talk Cancer. I'm Cary Adams and I'm the CEO of the Union for International Cancer Control based in Geneva, Switzerland. Lesbian, gay, bisexual, transgender, and queer individuals. The LGBTQI community may have a higher risk of getting cancer than those who identify as heterosexual. This can be due to negative experiences with health care providers, which can lead to a delay in care, or the fact that LGBTQI people often suffer discrimination that can lead to behaviour known to increase cancer risks such as drinking and smoking as they seek to cope in a more hostile world. With us today to tell us about the experiences of those patients and ways to tackle stigma and discrimination is Mandy Pratt Chapman, Associate Center Director for Community Outreach, Engagement and Equity, George Washington University Cancer Center in the USA and also affiliated with UICC because she was once a UICC Young Leader. So Mandy, it's an absolute delight to welcome you to this podcast. Thank you very much for joining us.

Mandi Pratt Chapman: Thanks for having me.

Cary Adams: First of all, how did you become an advocate for the LGBTQI community in cancer care?

Mandi Pratt Chapman: I have been engaged in community outreach in the cancer arena and cancer survivorship services for several decades. I came out a little late in life at 32, and when I came out I wasn't really sure about how my queer identity related to my health or my health care. And honestly, for a couple of years I was curious about that but didn't even tell my doctor that I was queer. Eventually I went to my dean and I said, You know, I feel like there's not enough research in this space. I don't really know what disparities may exist or if there's even anything to study. But I feel like this is something that I want to focus on and pursue and he was very supportive. And so I started digging and what I found out really kind of blew my mind. What you mentioned just now in terms of higher rates of tobacco and alcohol use is one of the one of the ways that sexual and gender minorities tend to have disparate cancer health risks.

Cary Adams: Well, let's dig into that specific issue you mentioned there about the higher rates of smoking and alcohol. Tell me about that. Why do you think it is a fact that there are more smokers, there's more use of alcohol in the community? What's causing it?

Mandi Pratt Chapman: It's not being queer that causes the disparity. It's all of the homophobia, transphobia, stress that you experience and are afraid of that lead to behaviours and impulses that are detrimental to our health. We all have abnormal cells circulating in our bodies all the time, but when your stress levels are higher and your immune system isn't working as well, and you're modifying your cells at a more rapid pace because of tobacco or alcohol use, that's what elevates your risk. The other thing that's important to note is major focused marketing from the tobacco and alcohol industries. So in healthcare systems, in schools, in different kind of more traditional social settings, there has been variability in terms of acceptance, which we definitely still see. We didn't really have a lot of safe spaces to exist, and so gay bars were a haven where people could be themselves. And the alcohol and tobacco industry definitely capitalised on that. You know, there was just a huge opportunity to tap into that need for belonging, that need for wanting solace. Right. It's hard to kind of deal with that on a day-to-day basis. So sometimes people choose things that are more healthy coping mechanisms, and sometimes we choose things that are not as healthy.

Mandi Pratt Chapman: There was a campaign called Project SCUM in the mid 90s, and SCUM stood for Subculture Urban Marketing. The "scum" sticks out in your mind, right? That was a campaign by R.J. Reynolds, really focused on homeless individuals and the queer community, particularly gay men. And that was one of the earliest kind of indicators of focused efforts on the queer community. And then in 2001, there was a big campaign for Lucky Strike called "I Choose". So that was definitely feeding into choice. And the 2005 campaign from American Spirit, Freedom's Campaign again, freedom to marry, freedom to choose, freedom to inhale. And Absolut, Jim Beam, Smirnoff. These are all groups that have really given money to queer organisations, including, you know, the human rights campaign and like lots of organisations. So it's a tricky thing when you're dependent on raising money for your mission. But the folks giving you money actually are marketing in ways that are going to reduce the health of the community you're trying to serve. Right. So, I mean, I think that's a challenge for nonprofits everywhere.

Cary Adams: And there was a Harvard study in 2018 which suggested that LGBTQI people in the US are less likely to have health insurance. What's actually causing all of that?

Mandi Pratt Chapman: Health care coverage has been typically linked to employment. So if you are in a State or a jurisdiction that doesn't recognise same sex marriage before the 2015 Supreme Court decision, you may not have been able to benefit from your partner's health insurance benefits. So like when that was changed through expansion of the Affordable Care Act to other forms of health insurance in the US and federal same-sex marriage applicability across States, that expanded employer insurance to spouses and partners where in some jurisdictions that access was already there. I think the challenge is that in the United States it's largely due to spousal and partner benefits being highly variable across states.

Cary Adams: Generally, I understand that it's more unlikely for someone from the LGBTQI community to enter the health care system. There's a reticence to go into that. Is that something that you're familiar with?

Mandi Pratt Chapman: Yeah, absolutely. I mean, I think that when people have negative experiences in the health care setting or hear of negative experiences, there's a there's a likelihood to want to avoid care. What I have found in talking to people as a researcher and in my personal life is that a lot of times, especially transgender people have to educate their providers. And so if you go into an emergency room and you're having a post-op issue and the people there have never seen top surgery and they don't they don't know what they're looking at and you're trying to explain it to them while you're trying to get emergency care, it's a little unsettling, you know. And that's just one example. I helped a friend of mine through gender-affirming surgery several years ago, and every provider but one misgendered them. one nurse got it right. And you think about women's centres and all of the pink and, you know, it deters you from wanting to get screened for a body part that you don't even really want to have. So I think there is a reticence to go into care when you think you might face discrimination or you have in the past.

Cary Adams: And presumably that feeds into what we said at the beginning, that it will cause the community to feel less encouraged to go into the health system to see whether they have a cancer or not. If there's hostility generally.

Mandi Pratt Chapman: You're worried about your basic safety and you don't know if your basic safety is okay day to day, it heightens your level of fight or flight, Right? And so it's hard. It's harder to trust. It's harder to think that people are there for your benefit. And in the US, we're facing a pretty challenging time right now. We've had 417 anti LGBT laws hit State legislatures since January and that's more than all combined in the last five years. And it's coming at a time when a quarter, 1 in 4 trans people say they've been physically assaulted. So like we're still facing a really intense battleground right now that is causes a lot of stress and a lot of fear.

Cary Adams: Is this something that you think is more broadly an issue, outside USA?

Mandi Pratt Chapman: I think in a lot of countries. I imagine that the level of safety would feel even less than how I feel. I have not gone to a country before where I was invited to go because the law still would allow them to stone me. And so I nominated another colleague to do that training.

Cary Adams: What's the the impact on the health of of the community in those countries? Presumably, it's quite dire.

Mandi Pratt Chapman: People probably can't be their true selves and may may avoid care. Certainly they will avoid disclosing or sharing certain parts of their identity relevant to their health if they do have to access care, which is not in the service of their overall health and well-being, right? To live in a society where you can't tell your provider certain things because you're afraid of what the consequences might be. One of the things I talk about in training when I'm talking to providers is – most people know this, but it's not a bidirectional relationship. You don't enter into the clinic wanting your patient to do something for you. You're there as a service provider and the wellness of the person in front of you should be what you're focused on.

Cary Adams: You mentioned the training you give. Could you give us a little bit more information about what you do in that training?

Mandi Pratt Chapman: So I developed a training called Together, Equitable, Accessible, Meaningful. And initially the training was really kind of helping people think about any historically underserved population in their area and addressing the needs of that population. And then I got some funding from NCI to tailor that more specifically to the LGBTQI population and added some content inclusive of some of the things we talked about in terms of tobacco and alcohol. Also, I don't think that we've really touched on this significantly in research, but an area of exploration is really how endogenous and exogenous hormone balance might affect medication management. Some medications operate differently in people assigned female at birth versus assigned male at birth. And what happens if you add hormones? You know, what's the mechanism of action going on there? There are significant considerations, like if you have radiation, if you have pelvic radiation therapy, you you may never be able to have gender affirming surgery, at least having those conversations or knowing if there are options in terms of management of treatment, I think is really important. And also for radiologists, just knowing like which body parts they're looking at, right? If they think they're looking at something and they're looking at a different organ or they don't know a prostate, that can affect kind of how they're interpreting imaging. So pushing people to be positive about data collection, but also take that data and think about how based on what you know, since we don't have great research based on primary principles in medicine, how might this affect the care of the patient?

Cary Adams: Now, you mentioned that this year you've seen a lot of laws passed which are probably detrimental to the community. But have you in your career seen progress?

Mandi Pratt Chapman: Yes, I think the pushback is a fear-based response to losing power. And I think that generationally, like my daughters generation, they don't even understand why this is so much of my career. Like, why is this so? Why is this something worthy of a podcast? Right? Like gender and sexuality are fluid. It's part of the human experience. You know, I think in some countries it's probably more progressive than in the US and other places. I do worry. I worry about people who don't have a voice, who aren't at the table, who are invisible and may not get the care that they need and face extremely high levels of mental distress. But I feel like we're in a regressive period right now as an indicator that eventually this is going to be a non-issue. Eventually, this is going to be something where enough people are going to be out, that physician-to-physician influence and diversity of medical training will in the long run get us to where we need to be. But right now, I think we're in a regressive pushback period in the US that's driven by fear, and it's pretty scary.

Cary Adams: You've written a lot, but you've also done a blog. If I could just capture one of the things you wrote, it was that discrimination hurts us, all of us, not just the community, hurts all of us. Can you expand on that? Because I'm interested in the broader challenges that we face as a result of this position that we find ourselves in.

Mandi Pratt Chapman: I think I was thinking at kind of two levels when I wrote that. I think at the personal level, as humans, I think we're oriented toward fairness and justice based on just my living experience. I feel like the number of times people say that's not fair, right? As a kid, like you're focused on fairness. You want things to be fair. You want to understand the rules, right? And if you're operating in a society where the rules aren't fair, I think that that is distressing for everyone. The other thing, at a population level, I think we do a huge disservice to humanity by not allowing anyone with certain talents to actually achieve those talents. And so by limiting the ability for people to reach their full potential, we are not solving scientific problems.

Cary Adams: We've talked primarily about the patient community, Mandy, but what about the the LGBTQI people who who work within the health system, the oncologists, the nurses and others? Have you studied  how that impacts them and their career and the way that they operate?

Mandi Pratt Chapman: So far I've found that most people have positive experiences with colleagues. I have done lectures in geopolitical areas where I was warned that it was very anti-LGBT and that the area where I was speaking wasn't a positive atmosphere. So I mean, that does exist for sure. But within the health care system and among colleagues so far, I feel like I've seen a lot of collegial support. I think the vast, vast majority of oncology practitioners, at least in the US, want to provide excellent care and value their colleagues' contributions from the LGBTQ community, but don't feel equipped to provide excellent care because the training hasn't caught up with the population demand.

Cary Adams: Well, that echoes my view of the cancer community. I've generally felt that they've been very open and they care passionately about the patient, irrespective of their background or anything about them. So I'm glad you're getting that sort of feedback in your research. Any wise words for anyone from the LGBTQ community that you could offer with regard to cancer prevention and also diagnosis and early detection?

Mandi Pratt Chapman: Well, first of all, for those who are diagnosed with cancer, I would say make sure that you find a provider you're comfortable with, that you feel like you can be yourself with. I think the number of people who really want to provide good care are growing, So don't tolerate feeling like you're isolated and not able to be yourself. At least open up your options to see if there might be someone that is more affirming. I would say to providers, make sure you're telling people to get screened even if it seems obvious to you or even if you think there might be a lower risk. And in terms of prevention, don't let the industries win, take care of yourself. What we have found is that social support mitigates so much. So for people who don't have families that reject them, for people who have strong friendships, strong networks of friends, affirming health care providers, those are the things that mitigate risk, right? So find your people, find social support. That's what's going to change the health outcomes is the level of acceptance and social support and ability to be yourself. So find your people.

Cary Adams: Mandi, that's great advice and I really appreciate you being so candid and open in this conversation because what you do and the research that you provide and share with others is so important to many around the world. And as you know, you have a friend in UICC, we believe passionately in the issue of inequities in cancer detection, prevention and treatment and care. It's the theme of World Cancer Day. And we will continue to push to say that anyone with cancer is a patient. Full stop.

Mandi Pratt Chapman: Thank you so much.

Cary Adams: You've been listening to Let's Talk Cancer, another podcast covering a specific issue for the cancer community. If any of this is relevant to the work that you do or it's something which you have experience in, please feel free to contact us at Communications at uicc.org and please refer to the other podcasts that we've made over the last couple of years. I hope you've enjoyed that podcast and I look forward to joining you at the next one.