Erin Spain: This is Breakthroughs, a podcast from Northwestern University Feinberg School of Medicine. I'm Erin Spain, editor of the Breakthroughs newsletter. In 2016, Northwestern created the first university-wide institute dedicated to studying sexual and gender minority health. Studies show that members of this group, which includes lesbian, gay, bisexual, transgender, queer, and gender nonconforming people have a higher risk of health problems from suicide to substance abuse and sexually transmitted infections.
Brian Mustanski: My name is Dr. Brian Mustanski. I'm the director of the Northwestern Institute for Sexual and Gender Minority Health and Wellbeing and I'm also a professor in the Department of Medical Social Sciences in the Feinberg School of Medicine.
Erin Spain: Let's talk a little bit about how LGBTQ people have been studied in the past and where we are today.
Brian Mustanski: Yeah. We've come a long way in the, in the last 20 years, you know, we can go back even 50 years to think about the work of say Alfred Kinsey, who was one of the first to really try to count how many people were part of the SGM community and came up with these very well-known estimates like 10 percent of the population is SGM. There's been a lot of interest over the proceeding decades and really trying to understand the size of the population and you might be surprised to know that that research continues. We still actually don't have fantastic estimates on the size of the population and part of that is that there's different ways of counting it. You can focus on how people identify, do they identify as lesbian, gay, bisexual, transgender, do they have same sex attractions? Have they engaged in a romantic or sexual relationships with people of the same sex? So those, depending on how you quantify that, you might get different numbers. And so research is still continuing to try to develop new methods for how to best understand the size of the population. And in fact an important development was in the 21st Century Cures Act, which was passed with bipartisan support by Congress, signed into law by President Obama. It actually calls specifically in the 21st Century Cures Act for more work addressing the needs of the sexual gender minority population, including some methodological research that'll improve the quality of the work that's being done.
Erin Spain: I know the NIH, around the same time that we established the institute at northwestern, the NIH also made a commitment to studying this population.
Brian Mustanski: Several years ago the NIH created an office of sexual gender minority research that is charged with coordinating the work across the entire NIH. And I actually serve as an advisor in an advisory board to that office. A few other exciting developments are that last year, sexual gender minority people were officially designated as a health disparity population by the NIH, which includes other health disparity groups like racial-ethnic minorities, people living in rural areas. And that designation is important because it creates new opportunities for funding, focused on health disparities. And before that, in 2010, the federal government included sexual gender minority populations in their healthy people 2020 goals. Those are the goals that the US government makes every decade to address health disparities in the United States. 2010 was the first time that they included LGBT or sexual and gender minority people in those goals. And those goals are important because they call for data to be collected to address the disparities within the community, as well as set goals for closing some of those disparities. So that, those are some important developments.
Erin Spain: Here at Northwestern. We have this institute that's dedicated to now to study in this population. And you have about 75 people who are actively engaged in research. Tell me about some of the projects that are taking place here,
Brian Mustanski: The institute really grew out of what's called the IMPACT program, which is was my lab at the time which was focused on the health of LGBTQ youth. And as the IMPCT program grew within the department of Medical Social Sciences, we are getting bigger and bigger. We had more and more projects, more and more faculty. At some point the program was actually probably larger than a lot of institutes at northwestern and it really made sense from a perspective of really taking advantage of that capacity and, and the supports that would come with having an institute to found an institute. And since that time we've really flourished, you know, sometimes I say it feels like we're strapped to a rocket because, you know, just even over the last couple of years we've grown to having you know, millions of dollars of research funding. We've had an incredible response from philanthropists who are interested in supporting our work, you know, not, not everything we do can get supported with federal dollars. So philanthropy is just so critical to creating opportunities for us to educate the next generation of people who want to do this kind of work. At the NIH, about 80 percent of the funding they have focused on the SGM population is focused on HIV aids. We know that HIV AIDS is a, is a major health issue that disproportionally affects our community. And similarly, I would say at northwestern, about 80 percent of our SGM research focuses on HIV aids, but we're very committed to advancing work on other health issues as well. So we've been doing work on mental health, on suicide, suicide, understanding how to measure suicide risk and LGBTQ youth, for example. Understanding what factors are putting them at risk for suicide, what are protective factors like family support, community support. We're very excited. We've been very interested for many years and part of our strategic plan for the institute was to grow research focused on women's health and with some investments that we made, we have our first grant focused on women's health. It's focused on intimate partner violence in young lesbian and bisexual women. And so we're very excited to have that work happening and there's a lot of things that are now spinning off of that focused on other women's health issues. We're also very interested in other populations that have been understudied, that are part of the SGM community. You might be surprised to know that bisexuals actually represent the largest number of SGM youth. That's the biggest group, but there's been very little research today on the health of bisexual young people and so we were happy to recruit a new faculty member, Dr. Brian Feinstein this last year, whose primary focus is on the health of bisexual adolescence. And we're also very interested in moving into new health issues as well. So we have some new grants focused on cancer prevention. We have a project focused on increasing HPV vaccinations in young gay and bisexual men. We have a project focused on cancer survivorship in adult gay men who are cancer survivors and also living with HIV. So we're, I'm very excited to be moving into some of these new areas as well.
Erin Spain: It is exciting to hear about all these new projects, but as you mentioned, HIV/AIDS, it still needs a lot of attention because while the numbers are going down in the general population of people diagnosed, in young gay men, the numbers are still rising, especially in Latino and African American men, young men are at the highest risk. Can you talk a little bit about some of your research specifically and how you're finding ways to connect with these young men and educate them?
Brian Mustanski: Yeah. It's so important. I mean the developments that we've made in HIV prevention and care over the last 20 years are very exciting and we are seeing declines in numbers of diagnoses in the general US population. But unfortunately we see other populations that are really left behind and that very much includes young gay and bisexual men, particularly Black and Latino, young gay and bisexual men. The CDC recently estimated that if we don't change these patterns, that one in two black gay men will get HIV at some point in their life. One in six Latino and one in 11 white gay and bisexual men will get HIV
Erin Spain: That sounds like a public health crisis.
Brian Mustanski: It is absolutely a crisis. And we've been studying, I've been studying this population for the last 15 years and we are very committed in our institute to do research that doesn't just observe problems but really creates interventions to address them. So we really have this mentality of doing translational research, observing an issue, studying a population, understanding the patterns, the risk and protective factors, and then using that information to create services and programs and interventions. So we've been doing, for example, a very long term cohort study of young gay and bisexual men in Chicago. It's actually the longest running study of young gay men ever done. We are now following some of the guys for over 13 years had been in the study. They really grew up with us in many ways. They were in their teens and now in their in their late twenties and thirties and we see a very high rate of HIV within this population. We see that important factors like a lack of actually even education about HIV. You know, I think a lot of people are under the impression that everyone knows about HIV, but we really don't do a great job of educating young, gay and bisexual men about HIV. You know, the typical places where people learn about it. Like schools don't really talk about same sex relationship.
Erin Spain: In general, same sex relationships aren't brought up much in sex ed, in school,
Brian Mustanski: Exactly in schools. And then parents, you know, we recently published a couple of studies showing that parents feel very ill equipped to talk to their LGBT children about sex because in most cases the parents are heterosexual and don't necessarily know that much about same sex relationships. And so, you know, you think about schools and parents being two important sources and also peers, a lot of young LGBTQ youth don't necessarily have access to a lot of other LGBTQ youth, so schools, parents, family, friends, they're not getting it there. And one of the avenues that we've been really pushing on for, for the last year is using the internet as a way to reach them with the idea that let's go directly to them with education that we know can work.
Erin Spain: Everyone is on the Internet now. Young people have phones. So that's where you're going and one of your online programs is called Keep It Up. I think this is what you were talking about. You're using gaming, you're using videos. Tell me a little bit about the program and you've had some pretty amazing results so far.
Brian Mustanski: Yeah, we were happy. The, the results just came out from this trial. It was a five-year study, was a randomized trial comparing the keep it up intervention to essentially kind of basic HIV education facts about HIV, more or less, almost PowerPoint slides about HIV. And we compare that to the Keep It Up intervention, which is much more interactive, engaging. It includes things like a soap opera where we follow a cast of young gay men and understand assumptions that they make about things like monogamy in a relationship, assumptions people make about someone's HIV status and really how making those assumptions can be really dangerous and that the best thing to do is actually to have a conversation. And the intervention also includes a lot of role model stories. We do a lot of interviews with other young gay and bisexual men, diverse young men and ask them questions like, what do you like about your sexual orientation? Many people say, no one's ever asked them that question before. They'd never heard anyone talk about what they like about it. And so it's really powerful for them to hear from other young people talking about their lives that way. I think what's unique about the Keep It Up intervention is that we really developed it in partnership with young gay and bisexual men with diverse young, gay and bisexual men and really took into account their feedback about how to develop it in. One of the things we heard consistently from them was, we don't want this to be a class. We don't want to just get a bunch of facts about HIV. We need to understand how this fits in our lives. And so the way that we created keep it up is that each of the seven core modules is a different setting or a different part of the lives of young gay men. So we have modules that are about dating. We have modules that are about friendship. We have modules about going into bars and clubs. We have modules about using apps and the internet to meet romantic and sexual partners and then we give them opportunities to set individual goals that are important to their life. And so it really wraps HIV education into the lives of young gay men.
Erin Spain: It's realistic, when you go in and look at these modules, I mean these guys, it looks like someone you would know your friend, even some of the animation that you're using. It's very assessable. And that's like you said, that's important because it doesn't feel like a lesson for them.
Brian Mustanski: Yeah. So actually at the end of the interview we asked some of the young men a little bit about what they thought about it and that sentiment came through very clearly. So for example, one participant said "I liked how informal it was and how I could do it at my own leisure and presented a campy and fun way to make it accessible to many people and made boring and scary topics more interesting and accessible". So we heard, you know, another young man say "I love the newly found passion for staying healthy this study has instilled in my life, thank you." You know, and so we really felt like by creating it with young gay men, we were able to create something that was relevant to them
Erin Spain: And the results are fantastic. Tell me what your results have shown some far with this intervention.
Brian Mustanski: Yeah, we were really blown away by the results of the trial. We found that when we compared the Keep It Up arm to the control arm, the HIV education arm, we found that actually both arms produced some reduction in risky sexual behavior and that makes sense. You know, the control arm also included HIV education. And so people did benefit from that, but we found that the effect was bigger in the Keep It Up arm in terms of condom use, less risky behavior. I think more importantly, we tested all of the young men for chlamydia and gonorrhea at baseline and at one year later, and we found that the young men that were randomized to the Keep It Up arm had a 40 percent lower rate of sexually transmitted infections than the guys in the control arm, that's a huge effect. When we started the study, we thought, maybe we'll see a 10 percent or 15 percent effect. There's never been an e-health HIV intervention before that had a biomedical outcome. So going into it we weren't really sure what the effect would be. And we were really excited about that because sexually transmitted infections are a marker of HIV risk. Obviously the same behaviors that can lead to HIV transmission can also transmit sexually transmitted infections, but also having a sexually transmitted infection biologically increases your risk for HIV. So reducing STD rates is HIV prevention.
Erin Spain: What's next for this program? Because it seems like this would be a great tool for those parents, for the schools and even for doctors pediatricians to help intervene with young people. What's that?
Brian Mustanski: Yeah, so we have two angles that we're taking as next steps, one we've already started, which is we have another version of Keep It Up that's actually been adapted for younger men, so we want to try to start reaching these guys as early as they can perhaps even before they've started having sex. So we have a new intervention called SMART which is designed for teenage, gay and bisexual boys, also includes sex education and is online and we actually will be delivering it in both English and Spanish and we just started enrollment for that project a couple of weeks ago. Eventually we hope to enroll almost 2,000 young men into the project. And then in terms of the next step for Keep It Up, you know, the big question is how do we take something like that that works and get it to the populations that need it. There really isn't a formula for how to do that when it comes to e-health intervention or an app. People haven't really figured that out exactly. How do we take a health technology and, and support it and get it out. We used to say, you know, when we started doing health work, if you build it, they will come and we know that's not true. You can't just put something out there and expect people to want to find it. Right. So what we're hoping to do next is actually to study that implementation. Um, it's what we call implementation science or the science of studying the implementation of intervention. So we have a grant under review now that we're optimistic about and hope that will be funded, that will actually compare different strategies of implement and keep it up across the United States to understand what are the effect most effective ways to get this to people.
Erin Spain: You mentioned going into those younger populations of young men. Can you talk a little bit about some of the challenges and things you've learned as you've tried to study these populations?
Brian Mustanski: Yeah. Well, you know, I think one of the first challenges we always have is well, how do you find the community? It's not like there's a list of all the gay teenagers in the city that we can just download and start making phone calls. So we have to always be creative about how to reach the population. Within our institute, we have a team of recruitment specialists that are almost like a small advertising agency honestly. They're very skilled at how to produce ads on Facebook, on Instagram, on other social media that, that landscape is always changing. So you always have to be on the forefront of how know Snapshot, exactly, these kids are always on the forefront. So we have to be too. And so we do use social media a lot as a way to, to do outreach.
Erin Spain: Our location here in Chicago, the third largest city in the country gives you a lot of people to reach out to and enroll in your studies. Can you talk a little bit about location and how being here at Chicago at Northwestern has really helped you?
Brian Mustanski: Chicago is a really fantastic place to be doing this kind of work. You know, we are Cook County as an extremely diverse community, a very diverse county. We're able to enroll very diverse communities into our work, which I think is so important when we're studying health disparities. There's also some really great organizations in Chicago that we partner to partner with, so five years ago we launched a biomedical research laboratory within Center on Halstead, which is the LGBT community center here in Chicago. So our institute actually has a lab, interview rooms, offices in the community and it's really a great place for people who want to participate in research to come. It's welcoming, they can get access to other educational services and cultural events that happen at Center on Halstead and we also partner with over 20 other community organizations within Chicago, like Howard Brown and others in the kind of research that we do,
Erin Spain: We just wrapped up pride month in June and Northwestern University was active in parades, there was some media stories and publications. We even flew the pride flag on the Ward Building here in the Chicago campus. Can you talk a little bit about this sort of outward display of acceptance and support? How does this help you, you know, move your work forward?
Brian Mustanski: I think those, those things serve as physical as real signs of the commitment of the university to the community. You know, last summer we moved into a dedicated new floor at Northwestern downtown campus for our institute, you know, the university renovated a floor of a building for us. We got to design the institute to fit the needs of the kind of work that we do. That's a real sign of commitment that the university has made to our community, to our population. They renovated space at Center on Halstead so that we could have a lab in the community. Those kinds of signs and signals are so important. You know, when I started my career, when I was thinking about applying to graduate school, one of the things that, um, I was told is don't tell them you're gay when you apply because you may not get accepted into grad school. They may not think that gay people should be psychologists and you know, that that history is there. And I think universities need to show signs of commitment to our community to help the next generation of people understand that this is a welcoming place for SGM people. Within the institute. We had the first multi-stall gender neutral bathroom at a university within Chicago and again, that's just a sign that we design our physical space to be respectful, to be welcoming to the community. Where
Erin Spain: Where do you see this area of research going and what needs to take place to really start making an even bigger impact?
Brian Mustanski: I think that there are other universities that are starting institutes as well or work groups. I'm often asked to come and speak at different universities that are, that are leading these initiatives and I'm so excited to see to see them happen. I think that we as a health focused field need to be thinking about some of the other health issues as well that disproportionately impact our community. So, you know, as I mentioned before, about 80 percent of NIH funded research with our population is focused on HIV. You know, we know that our community a disproportionally smoke cigarettes. We know that our community as at higher rates of making suicide attempts, we know that our community, um, is the less likely to get certain kinds of cancer screenings to get HPV vaccinations. And those are all important health issues that we need to advance. And we do that at Northwestern in two ways that I think our peers can do as well. One is that we hire faculty that their primary interest is the health of the SGM community. We have 10 core faculty within the institute that, that's their primary focus. But you know, we're never going to have enough faculty who are only interested and we're never going to have enough scientists just focused on our population to address the needs. So what we also focus a lot on is partnering with other faculty that are doing exceptional research in these other areas. So, faculty who do cardiovascular disease research, for example, or we have a great example, which is there was a faculty who had been doing HPV vaccine research, uh, and young women and approached us and said, I'd like to start doing this research in young gay men, but I'm not sure exactly where to start. And we said, well, let's do a pilot study together. You know, we did that pilot study. It got published in a great journal. We said let's work on a grant together, submitted the grant, it got a fantastic score. Ii got funded on its first submission and now we're doing HPV research because of that partnership. So, so we really see we're going to grow our own ranks of people who are focused entirely on this population, but we're also very interested in partnering with the amazing researchers at Northwestern who are working on so many other health issues and facilitating them working with the SGM community.
Erin Spain: Your passion really comes through. I mean, this is not only your work, you're publishing these papers, you're running this institute, but this is part of your community. What drives you to do the work that you do?
Brian Mustanski: Intrestingly, when I, um, was going to graduate school, I was actually interested in being a psychiatric geneticist and that's what I was studying. I was studying the genetics of mental health issues in young people and, so I was doing all of this adolescent health, mental health research focused on genetics. I was at Indiana University, which is also the home of the Kinsey Institute and was doing clinical work in their sexual health clinic and at that time, you know, we were hearing more and more about the growing rates of HIV and young gay and bisexual men and I was going, started going to some conferences focused on HIV and really, despite the data coming out from the CDC is showing these alarming increases, I wasn't seeing a lot of research actually happening, focused on this population of young gay and bisexual men. And so I really had this moment of clarity when I was a graduate student where I said, I know how to study adolescents. I know how to study sexuality. I don't see a lot of people doing this. We're headed into a crisis. I kind of felt like this moral obligation and, and really switched my career towards the end of graduate school to focus on HIV and sexual health. And that's really been my focus ever since. And you know, it is a passion of mine. I you know, we, we mentioned that a Northwestern was in the pride parade. I was happy to march with the group from Northwestern and you know, it's really, it's really amazing to basically be walking for three hours in a Northwestern t-shirt at the pride parade with people just clapping and cheering and being so excited to see Northwestern represented, seeing alumni and people who are students, you know, really. I'm so excited and, and it, you know, I really feel a passion for this work and for our community.