At this year's International AIDS Society Conference on HIV Science (IAS 2019) in Mexico City, Asa Radix, M.D., M.P.H., gave an opening plenary presentation entitled, "Lost in Translation: PrEP implementation and transgender people." Radix is the senior director of research and education at the Callen-Lorde Community Health Center in New York City and clinical associate professor of medicine at New York University.
Terri Wilder: I thought it was really interesting when you first got up to the podium, that you said that this was the first time transgender issues had made it to the plenary session.
Asa Radix: Yes. It was. I mean, there had been -- you know, at the International AIDS Conference in Washington, D.C., there was a discussion on trans issues, but there's never been anything at the IAS since then. So, it was long overdue. And hopefully people were able to hear something new and learn about the challenges that are faced by trans people.
TW: Yeah, I was really surprised to hear that. And I thought you did an amazing job of laying out a lot of the issues, before you really dove into HIV and PrEP [pre-exposure prophylaxis] as it relates to this community. Your very first slide was defining what the terms sex and gender mean. Why do you think it was important to talk about that at the very beginning of your talk?
AR: Because there's a room full of mostly medical providers and researchers, but often people don't think about those types of issues; the difference between sex and gender. They're not working with transgender people every day. And having given many talks like this, it was important to actually start with that because otherwise, you know, I think people have -- sometimes they're confused about who trans people are. And that leads to a lot of the problems of people not being able to get into health care, or being misunderstood.
When people understand how important it is that [people are able to] own their gender and they can be the person they are in medical settings and so on, that's so important. You know, misgendering someone is not just calling someone by the wrong name. It really affects the core of that individual, their entire identity. So that's why I started with that.
TW: What do you think is an important definition for folks who are going to be reading this interview with us to understand? What is the difference between sex and gender?
AR: Sex is, you can say, your biological makeup. We say that it's based on hormones and chromosomes and things like that. But really, sex is based on anatomy. Because when you're assigned a sex at birth, they're not doing any elaborate test. All the person who delivers you is doing is basically looking at your anatomy and assigning you male or female. And that's all it is.
Unfortunately, we tend to think that sets your path of your gender -- and it doesn't. I mean, your gender is how you see yourself. It's completely different from what your anatomy is. And for many people, that's concordant. But for about, you know, 1% to 2% of the population, your gender identity is largely different from the sex you were assigned at birth.
TW: You also talked about how there are people who don't fit into this binary that's been created that there are just men and women. And you specifically mentioned the term gender-nonbinary. What does gender-nonbinary mean?
AR: There are a lot of terms that fall under the gender-nonbinary definition. And I think I mentioned a few of them: you know, like, gender-queer, gender-nonbinary, gender-diverse, gender-nonconforming.
There are a lot of terms that people use. And I think they mean different things to different people. And it's really anyone who doesn't fall on the binary of male or female. Some people feel they fall somewhere in between, and some people feel they are completely separate from that, maybe a third gender.
So, I always feel it's important to ask them more, and if [someone] says to me, "Oh, I'm nonbinary," to tell me, "Well, what does that mean to you?" Because I don't understand unless you explain it.
The definitions are not fixed. They're always changing. They mean different things to different people.
TW: You actually even talked about how the language has been evolving and that it changes over cultures and even geography.
AR: Yes, that's correct. And, you know, if you look back even 10 years ago, nonbinary people -- I mean, obviously, they existed, but they didn't exist in the medical literature. They just weren't there. There were certainly, you know, a decade ago, discussions about transgender men and transgender women. But nonbinary people? That just wasn't -- that wasn't even considered.
In fact, for many people who are not binary-identified, they had to choose. Because that was the only way that they would be able to access medical interventions, if that's what they wanted. So for example, someone female at birth, wanted to have top surgery or a mastectomy, they wouldn't be allowed to get it. The insurance would say no: "You can only get this if you identify as a man."
So, many nonbinary people would say, "OK, I identify as a man. Can I have my surgery now?"
It really put people into giving a narrative that wasn't entirely authentic, because of the restrictions that were placed. I think that we've come a long way in understanding that there's a lot of -- you know, that gender is a spectrum, and people can have a fluid identity, and that that's OK.
TW: There are approximately 25 million adults worldwide that identify as transgender. And you showed a lot of different statistics. One that really stuck out to me -- obviously, because we were at IAS it was the scientific year; there are going to be more medical providers in the audience -- is that one in three people who identify as transgender face some kind of discrimination in health care settings.
AR: Those statistics came from the U.S. trans survey, which is a survey that included 28,000 trans and gender-nonbinary participants. And this was in the United States. So if you went to other countries -- for example, in the Caribbean or, you know, in Kenya, or South Africa -- the proportion of people who face discrimination in health care settings is probably much, much higher.
TW: And then when you look at some of the other issues that you talked about that kind of intersect with that, there is a really shocking slide that you showed from the transgender murder monitoring, that showed across the globe the number of murders that were happening. You also spoke to higher rates of suicide and how stigma obviously influences discrimination.
Despite a lot of the information that you provided, you talked about that there's this lack of data about trans people and their lives. Why do you think there's this lack of data?
AR: Because people don't count -- the data aren't there. And people of trans experience aren't counted. Every country has a census. And the census designates you as male or female. There's no opportunity for people to be anything other than male or female. And usually it's based on your assigned sex at birth, so especially in countries where people can't access gender-affirming care, medical transition, top or bottom surgery for those who want it; they will be regarded on the census as whatever their sex was at birth. Many countries, you can't change your gender marker.
So, you know, you're in the census by looking at your ID, or they're looking at something else. And you just get designated as the wrong gender in the census.
The studies are the same. If you try to go into a study, you know, you kind of have to pick a box. And there are very few studies that allow you to say, "I was assigned male at birth and I identify as female," or "I identify as nonbinary." So, it doesn't work.
It's very hard to get population-based data. We're getting a little better. I mean, some countries, like India and Nepal now, have changed their systems so that people can be registered in the census as a third gender, or something other than male or female. But that's quite rare.
TW: When we look at this lack of data about trans people, then when we want to find out information about that particular community, in terms of prevalence of HIV, then it gets even more difficult.
AR: Yes. It does. I mean, the reason why the meta-analysis by Stef Baral [on HIV in transgender women worldwide] was, you know -- I mean, it was very timely when it happened; we just didn't have data. The meta-analysis includes data from the countries that asked them. So it was very few countries. These were places that had surveys and have lab-confirmed HIV prevalence.
The group was able to come up with, as you saw, a kind of global average. But, you know, very few countries were included in that first paper. I think it's interesting that all the subsequent papers that have been published have really shown that this wasn't something that's only happening in North America, Europe, Australia, and places like that; it's happening everywhere.
TW: And then you went on to talk about, for trans men, we actually don't have even that kind of data.
AR: Yeah. I mean, in studies this small -- I do believe there is a much lower HIV prevalence among transgender men. I mean, one of the biggest issues, though, is that when we do these surveys, we're often not asking transgender men about their risk. So, for transgender men whose partners are cisgender women, we would expect them to be lower risk. For transgender men whose partners are cisgender men who are living within communities of gay and bisexual men, the rates of HIV are going to be higher.
So it really is important to be asking people about this. The same way when we talk about men with HIV, we understand that men who have sex with men -- transgender men who have sex with men -- have higher rates of HIV than cisgender men who partner exclusively with cisgender women.
TW: When we think about the transgender community, who should we be considering for PrEP?
AR: Anyone who has a risk factor. I think it's not a matter of looking at people based on their gender identity; it's about taking people based on their sexual behaviors and activities, or injection drug use, or the HIV status of their partners. You know, the issue that I have with many of the guidelines for PrEP is that they don't inquire enough into sexual behaviors. They count every cisgender man who has sex with other cisgender men as high risk. And not every gay man is high risk. You know? It depends on who your partner is and what you're doing. I mean, if you're never having sex with your partner, you're not going to be at risk.
I think that's one of the problems with guidelines, is they make a lot of assumptions about what people do, based on their identity -- whether it's sexual orientation identity or gender identity. Not all transgender women are at risk for HIV. You know? I mean, some transgender women exclusively have sex with cisgender women. And, again, they don't need to be on PrEP.
TW: When a transgender person is on PrEP, and they are also taking hormone therapy, is there anything that medical providers need to be concerned about, in terms of PrEP and interactions with hormones?
AR: Yeah. What we know from the studies that have been done so far: The good news is that the medications with PrEP do not change the levels of estrogen. That's very important for people who use estrogen; they don't want those levels to be changed.
We think because there are now studies that have been published that show a slight reduction in tenofovir levels, but still in the therapeutic range; we think that there is some drop in serum levels of tenofovir. But the levels still seem high enough. The medications still work if you take them properly.
What many people are saying is that it looks like possibly transgender women may need to have better adherence. So, for people who aren't on hormones, it looks like you could skip a few days in a week, and you would still be OK -- you know, four pills or more a week. But for transgender women [on hormones] it may be too high a risk. We're not really sure.
TW: You also mentioned [an article [https://www.ncbi.nlm.nih.gov/pubmed/30602481]] that actually came out in January 2019, "The Vaginal Microbiome of Transgender Men." Can you talk about that article? And what does the information in that article mean for transgender men who may be using something like PrEP?
AR: This was an interesting article that compared transgender men who were receiving testosterone to cisgender women. And what the article showed was that compared to cisgender women, they were less likely to have Lactobacillus, which is like the healthy vaginal bacteria -- less likely to have that as the predominant genus -- and more likely to have more of the microbial environment. So, different types of bacteria, and also bacteria that are associated with bacterial vaginosis.
I'm not sure that it means anything about the efficacy of oral PrEP, but it certainly leads us to point out that in a study that is using vaginal tenofovir gel on those microbicides, that perhaps we should be thinking a little more about, are they going to work as well for transgender men? I'm sure you know that when they looked at efficacy of the gel, it didn't work as well in people who had lower prevalence of Lactobacillus and higher levels of bacteria than we see in bacterial vaginosis.
It was just an example of why it's important to include trans people in the study. I'm not sure that for any of the microbes I studied, that they ever addressed the issue of gender identity.
TW: I know that you're involved in a study, and you actually mentioned it, [the LITE study [https://www.litestudy.org/]]?
TW: Can you talk about that study a little bit? And what are the hopes of the study?
AR: Well, it's the LITE study. It's enrolling transgender women across six sites in the United States, in southern and eastern states. The idea is to look at HIV incidence. Its cohort is enrolling transgender women who are HIV negative. So we're looking at HIV incidence. We're also looking at factors that relate to acquisition of HIV -- so, both factors that lead to HIV and factors that protect against HIV.
We're looking at many variables, including insecurity, socioeconomic factors; we're looking at many things. And we should have results -- we already have some interim results; we had a poster in IAS, [and] we should have more adults over the next two years. Women enroll for two years in the study.
TW: Great. So I just wanted to end by talking about what you think are some of the barriers for PrEP in trans people's access to it. You had a list of barriers, but you also had a list of things that you thought would be facilitators of helping people to get access to it. Can you talk a little bit about the barriers?
AR: Yes. And, you know, I should also say these aren't my ideas of what the barriers are. The list came from qualitative interviews with transgender people. So, it was really the voice of the community, saying, "This is what keeps me out of PrEP care, and these are the things that would get us into PrEP care." I think it's important to inform the conversation by what the community is saying.
The main things that keep people out? The main entry points to PrEP are being in medical care, having HIV screening, having STI screening. And, unfortunately, for many transgender people, they can't even get through the door to access those things because, you know, again, a third of people have encountered stigma, discrimination, in health care settings. So why would you want to go into that place that's just going to humiliate you? Call you names? Not give you the care that you want?
So, many people stay outside of the formal medical system. And I think that's the main problem. Right? We have to get people into care before we can offer them PrEP.
All the things that were listed, like not including trans people in the campaigns for PrEP; we're focusing a lot on other populations, like cisgender men who have sex with men. What that means is, you know, if you have your pamphlets and your brochures and your subway ads, and you're only seeing pictures of men, then, as a transgender woman, you might think, well, that's not really something that I need.
And for transgender men who try to access these clinics that serve predominantly cisgender MSM [men who have sex with men], they might be turned away because, well, you have a vagina and we don't know how to care for you because your body is different. And people hear many reasons for not being put into care. It's really not appropriate at all that they're being turned away.
The things that keep people in care are welcoming statements, having materials that are specific to trans people, having background care for people. So you're more likely to go a clinic if they can help you with the other things that you need to get through life: They can help you with your name-change documents, they can help you with other legal issues, or help you access gender-affirming care, or hormones -- things like that.
It's not that difficult, if you get people into care, if you provide a level of care that they're happy for.
TW: Did you go to any of the other trans-specific sessions?
AR: There were two other sessions that dealt quite a lot with transgender health issues. And they all -- whether it was Brazil or Vietnam -- they all said the same things: It's very hard to get people into care, because the care that is being offered is often hostile and not welcoming at all. But once you set up the services centered on trans people's needs, and you train providers so that they know how to take care of trans people, and you use welcoming statements -- and you can fairly accommodate the huge numbers of people who now want to access care.
So there is a right way to do it.
TW: Right. And also hire transgender people to work in your health care systems.
AR: Yeah. I mean, absolutely. If you're going to try to do a campaign to bring people into care, or initiate PrEP, or improve HIV tests, you have to have trans people involved at every level. You know, if you're going to have trans medical providers, social workers, nurses, front desk people, case managers, peer navigators, you're going to do a lot better than if you don't include people.