We have known for many years that cigarette use is more common among people living with HIV in the U.S. than among the general population. The same is true of a host of cancers—some of which are strongly associated with tobacco consumption, others of which are not.
Amid these realities is another stark but obvious fact: Within the U.S., HIV predominantly affects LGBTQ people—and LGBTQ people appear to smoke at higher rates than straight and cisgender people.
At the intersection of all these interconnected issues are people like Scout, Ph.D., M.A. Scout is the executive director of the National LGBT Cancer Network and the principal investigator of the LGBTQ, tobacco-related, cancer disparity research network funded by the Centers for Disease Control and Prevention (CDC). In this capacity, he spends much of his time providing technical assistance for governmental tobacco- and cancer-focusing agencies, expanding their reach and engagement with LGBTQ populations. He leads a team of specialists in the organization’s Rhode Island office, focused especially on building tools and sharing strategies across state departments of health. He is also an expert cultural-competency trainer and sought-after public speaker.
Scout has a long history in health policy analysis and a particular interest in expanding LGBTQ surveillance and research. His work has won him recognition from the U.S. House of Representatives, two state governments, and many city governments. Scout is an openly transgender father of three, a vegetarian, an avid hiker, and currently training for a half marathon.
We caught up with Scout after he presented at SYNChronicity (SYNC) 2020, a virtual gathering of HIV, hepatitis C, sexually transmitted infections, and LGBTQ health leaders in September. During a session titled, “Rolling Down the Window: Smoking Cessation and LGBTQ+ Community,” Scout discussed the latest data around LGBTQ tobacco use in the U.S.
This transcript has been edited for clarity.
Cancer Rates Within U.S. LGBTQ Communities
Terri Wilder: Dr. Scout, thank you so much for being with me today. Before we get started about the national trends in LGBTQ tobacco use, can you tell me a little bit about the National LGBT Cancer Network?
Scout: Thanks for having me. I’m always excited when people are interested in going into one of the lesser-known areas of our health disparity.
The National LGBT Cancer Network was started about 13 years ago to help educate our own communities about our increased risks for cancer and how we also, unfortunately, have worse health outcomes related to cancer—and then to train providers in doing a better job of making us welcome in everything from cancer care, testing around cancer risk in the first place, and then, obviously, treatment. And then, also, we advocate to make sure that all the cancer organizations, projects, and initiatives around the country are inclusive of LGBTQ issues.
Wilder: What are the rates of cancer in the LGBTQ community?
Scout: I would love to answer that, but the truth is, every time we go into the doctor’s office and they ask if we’re LGBTQ on intake—we’re not going to know that answer, because that’s where we get that information. If you ever see LGBTQ on intake at a doctor’s office or a hospital, that’s usually because someone’s fought really hard to get it there. We’re trying to get all this extra health information about us.
Just as another example, until those questions are routinely on intake in doctors’ offices and hospitals, we won’t know what our COVID impact is, either. So, for a lot of the health issues that are really important, we have data points that are around the edges, but we don’t have the main story in the middle, because, basically, the health care system is forcing us to stay in the closet.
That said, the data points around the edges related to cancer would be that we have increased risks, and tobacco is the biggest driver of those increased risks. And when we get cancer, we show less satisfaction with our cancer care. We show less optimism about what our future will be. We have a harder time finding doctors that we think are welcoming. Sometimes we have to go to great extremes to find doctors that we think are welcoming.
Once we get all the information about how cancer impacts us, I think it’s going to be a big story about how we are already socially vulnerable going in. In an area where you have cancer care with a bunch of different doctors you don’t find welcoming—can create a lot of fragility for us, in addition to what already exists related to cancer diagnosis.
Tobacco Use, Stress, and Stigma Among LGBTQ Americans
Wilder: During your presentation, you shared data around tobacco use. Could you share some of the more surprising facts regarding tobacco use in the LGBTQ community?
Scout: What we realized is, there are a lot of us who don’t realize we have tobacco-use disparity in the first place. But, as with a lot of other stigma- and discrimination-related coping strategies, we do have a big tobacco-use disparity. When I started this work about 10 years ago, our smoking rates were 60% higher than the general population.
They’ve dropped since then, but you still see that there’s a huge gap between us and the general population. Our cigarette use rates have continued to drop as well, but right now, they’re still about 40% higher than the general population.
Now we have a new product on the scene, with vaping and e-cigarettes, and that has driven our overall tobacco use right back up to a 60% disparity. So, compared to the general population, we are both vaping and using cigarettes at a pronounced rate. That directly reflects all the stigma and discrimination that we experience on a daily basis in this world of ours.
Wilder: When you say that it’s directly related to the stigma and discrimination, when I think of smoking or vaping, I think of it as a way to cope with stress. Are you inferring that when people in the LGBTQ community face stigma and discrimination, it’s a stressor—and that leads to tobacco use and vaping as a way of coping?
Scout: There are a lot of negative health behaviors you pursue when you’re stressed, right? You know, tobacco use—whether cigarettes or vaping—is definitely one of those behaviors. There’s actually new research that was presented at SYNC that talks about how an unexpected number of LGBTQ tobacco users flat-out admit that they’re doing it to self-harm. They realize that it is bad for their health, and it’s kind of their way of being upset at themselves.
We see in a lot of areas that we use tobacco when we’re under stress—for example, the National Trans Survey shows that for trans people who can’t pass, they’re more likely to be smokers. Likewise, bi people who get less acceptance from both the LGT community and the straight community are also more likely to be smokers.
So, we not only see this stack with social exclusion, but we also see very explicit ways that this could be the way that some of us are even mapping out our own internalized homophobia or transphobia on ourselves.
Wilder: During your presentation, you spoke about tobacco use in the transgender community. Can you talk more about what you presented, and what accounts for the rates in the community?
Scout: That is another place where some of the big data indicators leave out trans people, which particularly frustrates me. But what we do know about it, from full population data, is that the trans tobacco-use rates correlate with LGB rates. And so, again, they’re roughly about 40% to 60% higher than the general population, depending on whether you’re talking about just cigarettes or vaping.
We see from some important sources, like the Trans Survey, that trans people are at a higher risk and are more vulnerable, more isolated socially, and experiencing more discrimination. Trans people are more likely to be using nicotine in some form.
I think that if you talk about the queer community, trans people are particularly vulnerable to social exclusion. So, it only makes sense that that means we’re really going to be struggling with this.
The other half of the equation, though, is we go to doctors more often, usually to get hormones, as long as we can afford that. That could mean that doctors intervene more. Some doctors will refuse to do gender confirmation surgery unless you have quit cigarettes. But, unfortunately, like with a lot of addictive behaviors, we do find that, in general, the population has a tendency to kind of squiggle around health advice like that. Because addictions are powerful and hard to get rid of.
Wilder: People are, understandably, very stressed out about the pandemic. I understand some mental health facilities have waiting lists. Do you think COVID-19 is causing any increase in smoking or use of other tobacco products?
Scout: There are a couple of different layers and ways that it impacts us. First of all, because of our increased smoking rates, we’re much more likely to both be more vulnerable to COVID-19, and then have worse outcomes if we get it. It drives me crazy that we don’t have the data to corroborate that.
So, at the same time, you hear that COVID-19 disproportionately impacts African Americans—especially African-American queers. We have no idea what that means for the rest of the queer population, or how specifically African-American queers are impacted differently than the rest of African Americans, because those data are missing.
We basically have a public health case statement, because of our smoking alone, saying that it was pretty likely that we are more vulnerable to getting COVID-19 and having worse outcomes when we do get it. So, that’s the first way that it impacts us.
Now, what does it mean, as far as our own communities, understanding the stress, the isolation? Does that mean that we’ve reacted by trying to get off of nicotine more? Or does that mean that we’ve reacted by picking it up or using it more? Unfortunately, the data there is still coming out.
We do know that quit lines have reported an increase in people calling them, because people were concerned about having a respiratory depressant—using cigarettes during a respiratory pandemic. On the other hand, especially as the quarantine wore on and on, it’s hard to figure out ultimately if this means people are using tobacco more or less. My guess is they might be using tobacco—they might be trying hard to get off it, in whatever form.
We’re seeing some interesting information surrounding vaping rates; they’ve been starting to drop for the first time. So, we don’t know the complete story yet. It could go either way: stress driving it higher, or concern about our health driving it lower. I certainly hope it’s concern about our health driving it lower.
Wilder: You mentioned in your presentation that tobacco use was ranked the No. 10 most important health issue. What, in terms of perception, is No. 1 for LGBTQ communities?
Scout: We have a series of needs assessments that have been done in different states around the country at different health facilities. And at each of them, you’re right that usually we say, “What are the most important issues for our community?”
And community members respond with, “Well, you know, it’s HIV. It’s mental health. It might be drug use. It might be suicide.” And then you get all the way down to 10 before you get to tobacco, smoking, and vaping.
But the interesting thing is, if you look at the epidemiological numbers, it’s a very different profile. Cigarettes kill about half the people who use them, when used as directed. And a large percent of us are using cigarettes, in at least the one-in-five range. But it depends on which numbers you’re looking at.
If you look overall, there are maybe about 10 million adults in the whole population who are LGBTQ adults in the U.S. population. If at least one in five of us are smoking cigarettes—which kill about half that number of people, when used as directed—you get to about a million people out of our general population that are probably going to die from cigarettes.
In comparison, we have about half a million LGBTQ+ people who are HIV positive. And that is not necessarily, if you’re managing it well, something that needs to be a terminal illness. It can often be chronic and manageable.
So, you can see we’ve got a huge amount of responsive activity related to our HIV infections and how to respond to them. But the truth is, we have much less attention and focus on tobacco, despite the fact that, according to current numbers, twice as many people are going to die of tobacco use, and they may not even have HIV.
So, according to the numbers, epidemiologically, as far as we know, tobacco use is the No. 1 thing that’s taking years off of our lives. And yet we don’t realize that, because the public health communities have not paid attention to us—as we do tobacco-control work—the way they should.
Wilder: When you say that tobacco use kills people in the community, do you mean that they end up dying from cancer or developing COPD [chronic obstructive pulmonary disease]?
Scout: Yes, absolutely. People usually do not die from tobacco use, per se. It’s just that tobacco is highly correlated with so many diseases. It is estimated that a third of all cancers would disappear if tobacco disappears from our planet. So that alone is a huge correlation, which is the reason why, at the Cancer Network, we’re really interested in it.
Yes, it’s also COPD. We have higher incidences of asthma in our communities, which is very likely linked to our increased tobacco use. There are more and more diseases every year that are directly correlated to smoking, including diabetes. We understand smoking is a general health depressant, and it takes its toll on every part of your body as a result.
How Tobacco Companies Target LGBTQ People
Wilder: You shared some great tobacco marketing examples that were targeting the LGBTQ community. Can you talk about them and comment on what the industry is aiming to do?
Scout: I shared some examples in the presentation, like a big Lucky Strike ad that says, “Whenever someone yells, ‘Dude, that’s so gay,’ we’ll be there.” It’s kind of like, No, Lucky Strike. I do not think you’re actually going to have my back, you know, with the gay bashing.
There’s another ad from American Spirit that says, “To live, to love, to breathe, to marry, to inhale; it’s all good.” And, you know, everything but smoking is all good there. So you can see that they deliberately try and mix our civil rights battles with the idea of freedom to smoke.
What’s behind the scenes there, because some of those ads were developed a while ago, is that we actually have records showing how the tobacco industry, during some of the big, high-profile tobacco tax battles, ended up commissioning LGBTQ civil rights leaders to say, “Hey, how do we get the queer people to support the tobacco industry?”
It was these civil rights leaders who were like, “Why don’t you do messaging like this? Why don’t you mix it with the idea of, ‘Hands off our body, let us live our own life,’ because that really resonates with us as we fight for civil rights?”
Unfortunately, it was our own people who taught the tobacco industry how to be more compelling for us. And they listened.
In the same way, we also saw that in the ’90s, because this is going back a long time—that Philip Morris was not only the ideal LGBTQ employer, they also gave more money to HIV organizations and other queer organizations than most anybody else we were seeing. They were a huge corporate citizen in our world. Unfortunately, they also sold something that killed you.
You can see what served their bottom line to us looked like something that was very supportive of us. That makes it difficult to figure out who really are your friends.
Wilder: That was so interesting. Obviously, the tobacco industry follows the data. Everything you’ve shared with me today about the rates of tobacco use and the community, they clearly followed that, too. And then, like you said, engaged with community leaders to help craft those messages. It’s like, “We’re going to target you because we love you. But at the same time, we’re going to try to kill you.”
Scout: Exactly. “But we’re going to advertise very heavily to talk to you about how much we love you.” Especially then, when other corporations were not advertising to us, a lot of people have gratitude. That’s not unreasonable.
Vaping, Nicotine Replacement, and the Smoking-Cessation Struggle
Wilder: You’ve mentioned vaping a couple of times. When it first came on the scene, vaping was promoted as a safer alternative to tobacco use, even by some medical providers. I was always taught that basically anything that you smoke or inhale can always have the possibility of doing some damage to your lungs. Is vaping really safer?
Scout: We’re really concerned about so many data showing that people who vape are getting COVID-19 more frequently. So, it’s a big question mark. The science is at its baby stage. What is very likely is that vaping is likely less harmful than combustible cigarettes. No one’s really questioning that.
But, as one of my colleagues says, if we’re trying to get people to not throw themselves out of the sixth-floor window by smoking cigarettes, is the answer to throw yourself out of the second-floor window by vaping? Or is it just to walk out of the building?
We do have strategies that work for cessation that we know are not risky. Use as much NRT [nicotine replacement therapy] as you can. Don’t shortchange yourself on it. NRT is a great way to help you along with a cessation strategy. Also, make sure you call one of the quit lines, which can all be reached with 1-800-QUIT-NOW. There’s a quit line in every state that can be reached by that single number. They have the best science on how to make sure you get the best information to actually have this cessation attempt stick.
Also, be gentle on yourself. A lot of people take seven or more attempts to get it to stick. Every one of your attempts is part of your journey forward. It may seem like Chutes & Ladders, but it isn’t. It’s more of a straight line, with every one of those attempts being one more step forward on the straight line.
Again, we do know that it’s very likely vaping is much healthier than cigarettes. But we don’t know how unhealthy it is. And we also are finding new information showing that, even as a cessation aid, there’s really contradictory information as to whether it’s even successful at actually getting people off their nicotine addiction.
All of that isn’t even the big story with vaping. Because if you look at vaping you have to understand one thing. The huge story, especially with our communities and vaping, is that over a third of queer youths are right now vaping. That means that a much smaller percentage are smoking cigarettes. That means that over a third of our youth are getting addicted to this highly addictive substance that’s really hard to quit, that people spend decades trying to get away from.
We see some huge increases in youth risk behaviors around vaping that we have not seen in any other youth risk behavior. There’s one survey showing that over 40 years, they’ve never seen a change as fast as they have with people taking up vaping.
So, the big story of vaping is that our youth are getting addicted. It’s, “We’ve got heroin, but instead of needles now, we’re going to give it to you in a pill form. Isn’t that much better?”
But you’re like, “No. Actually, maybe, don’t get people addicted in the first place, might be the better thing.”
When you hear about adult cessation, it’s not the story of vaping. The story of vaping is, what is it doing with our youth right now? That’s a real concern. One of the big things that you’ll see going around are potential bans on flavors, because the flavors are how the kids are getting addicted. Whether you’ve got menthol, or whether you’ve got cotton-candy flavor, that’s what makes vaping fun for youths.
One of the strongest things we can do—and the reason why we really are insistent that this is a social-justice issue for queers—is ban the flavors. That means all the flavors, including menthol.
Wilder: You mentioned NRT—what is NRT?
Scout: Nicotine replacement therapy. It’s the patch, and so on. One of my friends who smokes cigarettes says, “I don’t want to do NRT, because I don’t know how safe it is.”
Then I say, “Wow. You smoke cigarettes—and you’re concerned about how safe NRT is.”
We know that NRT is an incredibly safe way to quit. It will give you the nicotine to let you get off cigarettes; and then you can start to wean yourself off the NRT.
Wilder: So, NRT, in essence, is harm reduction?
Scout: Yes, exactly. It’s a patch. It gives you nicotine without any risks of vaping, without any risks of smoking. But it doesn’t have any of the pleasures of vaping or smoking, either. Which is why eventually you’re like, “I don’t want to be putting this patch on myself my whole life. I want to slowly start to wean down.”
Wilder: During your presentation, you told a great story about your friend, Louis Mitchell, and their experience with smoking. It felt like an important story on how and why a person uses tobacco, and how it’s much more complicated than people realize. Can you share the story about your friend?
Scout: Louis is an African-American trans guy who has struggled with health issues for a lot of his life. He talks about, for him, smoking ultimately came down to the fact that it was one of his oldest friends. More than anything else in his life, smoking is something he’d associated with starting to be more relaxed. Of course, behind the scenes, we know that smoking makes you feel more relaxed because it ratchets up your anxiety in between nicotine hits, right? So as soon as you get your nicotine hit, yes, you’ll be more relaxed.
For more of his life than anything else, he realized that was the thing he would go to, to relax, to deal with stress, discrimination, stigma, anxiety. He wanted to quit smoking, particularly because of his daughter. He wanted to be that kind of role model for his daughter. It was more important that he take care of his health for her than even for himself.
But he was really scared about this idea of giving up his oldest friend. He knew that his friend was, in his words, a liar and a thief. But it still was his oldest friend. He did a good job of showing how complicated it can be for someone to stop this health issue, where, if you haven’t smoked, it seems like maybe it’s easy. If you have smoked, you associate it with all those positive experiences over decades—which means it’s really hard to say, “OK. I’m going to get rid of that thing that’s made me feel happier than so many other things in my life.”
Getting Involved in the Research About Cancer in LGBTQ Communities
Wilder: Your organization has a new survey that you’re launching. Are there ways that people can get involved?
Scout: Yes, absolutely. We are launching our own version of the big Trans Survey, but for cancer survivors. If you’re someone who has experienced cancer—and over 60,000 of us every year are newly diagnosed with cancer, of the LGBTQ population—we really want to hear from you. Not just because of how your cancer experience went, and what we can learn about how doctors could treat you better, but also because cancer survivors, kind of like people with HIV, frequently use different medical providers in a row. This is also our way to try and get insights from frequent fliers of what the medical system needs to do to better serve our population.
We’ve got a lot of cultural-competency trainings out there, but we haven’t asked our own people as much, “What are you experiencing now? What have you experienced in the past? And what do you think needs to change?”
This is our chance to do that. If you have experienced cancer yourself, we’d really appreciate you filling out the survey. Or, if you’re in the community, we’d really appreciate you posting and sharing some of the shareables so that people know that the survey is there, and that this is their chance to weigh in and tell their story, so that we can help use it to change the way the health care system interacts with us.
Wilder: If people want to learn more about your organization and the survey, where do they go?
Scout: It’s at cancer-network.org. We really hope people share the information about the survey right now. That’s really our big focus. We’ve got a lot of other ways that we share information or collect information on this issue. So the more people who are willing to participate in that, the more none of us has to recreate a wheel; but we can kind of build our momentum.