It sounds like a pretty common-sense research practice, and yet, it’s still not very common. Transgender people continue to be excluded from HIV research, despite both trans men and trans women being at increased risk for HIV acquisition for a variety of structural reasons. In the HIV community, we’ve seen this play out recently, with transgender men (along with cisgender women) left out of the research studies and approval for emtricitabine/tenofovir alafenamide (Descovy), the second drug approved for pre-exposure prophylaxis (PrEP).
One of the people looking to make sure that transgender people are included at all levels of HIV research, whether as participants or researchers, is Brian Minalga, M.S.W., a nonbinary transfeminine researcher at the Office of HIV/AIDS Network Coordination. Minalga sat down with TheBodyPro to discuss why researchers must make room for transgender participants’ trauma, why hiring trans people is a part of making a welcoming environment, and how you, too, can incorporate trans people in your research.
Mathew Rodriguez: Can you just introduce yourself and tell me what you do?
Brian Minalga: Well, first of all, I’m a nonbinary transfeminine person, so, super important, right off the bat, to think about who’s in this workforce, doing this type of work, when you talk about transgender inclusion in HIV research. Research tends to be one of these fields that tends to be kind of ivory tower, so I think it’s really important, any time we have folks from these under-represented populations that are part of this workforce doing this work. It’s really important. I’m a project manager for something called The Legacy Project, which was founded by someone called Steve Wakefield, who now just goes by Wakefield. He’s kind of a legend in his field. Now he works at the HIV Vaccine Trials Network. At the time, he was really interested in the under-representation of Black and Latino gay and bisexual men in HIV research in the United States.
There was this concept that with PEPFAR (the U.S. President's Emergency Plan for AIDS Relief) and a lot of international HIV research happening, a lot of the focus on HIV globally was outside the United States, but research happening inside the U.S. was leaving out a lot of these under-represented populations. So his research looked at who was being left out of research that was being done in a U.S. context and try to bridge that gap by building capacity—not only with those populations, by saying there are opportunities they can participate in, but by building capacity with researchers. Because there’s a lot of historical mistrust and distrust, for obvious reasons.
So the idea was to work with populations and work on the issues of trust with researchers, and work with researchers, and say, “You have these systemic issues happening, you’re part of our social system that is not equal. So what can we do with you to improve this relationship and improve representation in research?”
MR: There’s mistrust among so many marginalized populations, but we’re talking about trans people now. What do you think, as a researcher, is behind the mistrust?
BM: One thing is, with the U.S. Transgender Survey, I think it was in 2015, we have the hard data that shows all the trauma that trans people face in medical settings. And that’s just in the medical setting. In order to get to the medical setting, trans people have to survive all of these different things from childhood through adulthood. Within the medical setting, trans people are being physically abused, sexually abused, misgendered. So much is happening in the medical industry that is not only discrimination and stigma but literal abuse, traumatizing abuse of trans people. It totally makes sense to me that trans people might not want to approach a research study and say, “Here is my body, do what you want with it.” Which I think is something a lot of people have in their minds—you know, being a “guinea pig” for a research study. And a lot of populations like you mentioned have this notion of, “What are they going to do to me?” It’s not a relationship.
MR: I did a story recently about nurses having to know more about trauma, because, if a nurse doesn’t take a patient’s trauma into account and they go to touch the patient, they don’t know how that might register in a patient’s body. So, really, a huge part of trans inclusion is about educating researchers about trauma.
BM: Yes, which is perfect, because what this presentation is that I’m doing tomorrow is about a training that I, along with a great group of people, have developed, training researchers on a variety of things. Then there’s five modules that we’ve developed for researchers, the last of which was trauma-informed care for transgender participants in research. So we’re training researchers on just the basics of what is trauma-informed care. And I’m tailoring it for working with trans people so you don’t traumatize and retraumatize.
MR: What are some ways, subconsciously, that participating in research might retraumatize a participant that researchers might not be aware of?
BM: So, you named one already, which is the touching of a trans person’s body. And even the language we use for trans people’s bodies is probably going to look a little bit different. So in the training module, when we talk about sensitivities with a trans body, for example, if you have a trans man coming into a research study and you’re talking about their breasts, that’s probably going to be a traumatizing thing for someone who has a relationship with their chest. So we talk about using a different type of terminology—and really, I mean, the thing with language that gets so tricky is language means something different to literally every person using it.
So what we tried to get across in the training is getting researchers to recognize that the only way to use the correct language is to ask and to get that information from the participant on what language they want. So language can be really traumatizing, but a lot of these studies do require somewhat invasive procedures. You know, when we’re talking about collecting samples, for example, like rectal tissues, vaginal tissues, doing swabs of different orifices—all of these things, depending on how it’s done, can be really traumatizing to a trans person.
MR: I want to talk a little bit about the real-life consequences of what happens when trans people are not included in HIV research. I think one really good example of that is Descovy for PrEP. I think for some people, they’re like, “It doesn’t matter if we include! People are people! Why do I have to specifically include?” So can you talk a little bit about consequences?
BM: Absolutely. I mean, the Descovy issue is so problematic that that happened. But there’s a piece of it where I’m like, “See, now we can point to such a clear example.” It’s crystal clear what happened. Basically, when certain populations are excluded … well, when researchers fail, let me put it that way. When researchers fail to include certain populations, what happens is we perpetuate this chasm in our society where marginalized populations aren’t getting so much. They’re not benefiting from so many different parts of our society. And when this happens in research, when researchers exclude trans people, what happens is cisgender people benefit from the research, their tax-funded research, and they get products that become approved for them. And trans people, or whoever, like in this instance, [transgender men and cisgender women], have been completely excluded and left out of benefiting from the second drug for PrEP. And we know that cis women are already so under-represented as users of PrEP. I think it’s about 500,000 women are estimated to benefit from PrEP but are not accessing it. So this other option, now they [are not] going to have that as an option. And the same way with trans folks. So we kind of create this two-tiered system where if you exclude a population versus include a population, you’re ending up approving products for some and not approving it for others. And when we look at HIV, which already is a condition that is so racialized, it just puts a spotlight on all the issues of discrimination in our society.
You get products approved for some and not for others—and we already know trans people are heavily impacted by HIV. So if products are to work, if we’re to end the HIV epidemic as everyone is talking about, products need to work for trans people. And the only way that we know if they’re going to work for trans people is if they’re included in studies. Because now we see a perfect example of a product that has not been approved for a population that was not included.
MR: In the training you’ve developed, does it only focus on trans people as patients or participants—is there also a component about having trans people on the research team?
BM: Yeah, there’s a little bit of talk about having trans people on the research team. One of our modules is about creating a gender-affirming research environment. So that’s all about, from the moment people walk into a clinic for a research study, what are things that can happen that can either create an unwelcoming environment for them versus a gender-affirming environment. And one of those components is having trans people as part of the research teams.
MR: We ran an article recently written by someone who worked in an AIDS services organization, saying that to counteract the ways white supremacy is in these spaces is to eliminate things like educational requirements when you are building teams, and really hiring from the community. Can you talk a little bit about ways that you’ve seen—I mean, you’re also someone who’s nonbinary and transfeminine—how a research team is changed by having trans voices in the room?
BM: Oh my gosh. Well, such a big part of this is the advocacy of trans people. I’m seeing such an amazing shift. It’s a very exciting time for me, because I’m seeing studies now come out of the National Institutes of Health, specifically the National Institute of Allergy and Infectious Diseases (NIAID), that are focused specifically on transgender people. And I know that this has happened only because of the advocacy of transgender people talking to researchers, becoming part of research teams, and saying, “Our people need to be representative in studies.” And so now there are, there’s actually two studies that I can think of in development right now. One is with HIV Prevention Trials Network, and one is with the AIDS Clinical Trials Group, focused on HIV treatment. And both of these studies in question are looking specifically at transgender women. So, just super exciting to see that happening. And I know that it’s because of the inclusion of transgender people as part of research teams.
MR: Is there anything that I haven’t asked or brought up that you [want to] make sure gets included?
BM: I’ve already kind of told you a little bit about the studies that are happening. Data collection actually might be one thing that is, I think, super important in research and in public health. You know, like with the CDC [Centers for Disease Control and Prevention], for example, we keep hearing over and over again, “Oh well, there’s not enough data to talk about trans men,” or “There’s not enough data to talk about nonbinary people,” or “There’s not enough data to say these are how many trans women have HIV or are vulnerable to HIV.” So the first thing actually that our group said when we came together was that we need to change our forms to better collect the data so that our participants can be adequately represented.
You’re never going to have the data if you’re not collecting data that allows people to say, “I’m a trans person.” Right? So that was the first thing that this group did, actually, was put together a data collection form called the “two-step method” that collects both on the participant’s sex assigned at birth, which can actually be kind of a tricky question for trans people to be asked that question. But there’s always a “decline to state” option, so we made sure that was included as well. So, it’s a two-step question so that sex assigned at birth and gender identity are collected. So therefore if a trans person does not identify as trans, they just like to identify as a man or a woman, for example, then you cross-reference with sex assigned at birth and now you see, “Oh, actually, there are a lot more trans people participating in studies than we thought.” So that’s one thing that all of the five members at NAIAD are now using, is this two-step method for data collection.
MR: How can people access these materials?
BM: I’ll have to send you a link, because it’s a little bit hard to explain verbally, but it’s on this thing called the DAIDS learning portal. And you just sign up for a profile. You don’t need to be part of the research network.
Editors’ Note: Minalga later emailed TheBody to add that once someone has an account, they can type “transgender” in the search bar to find the trainings. There are five modules in all, with the first three currently available. The five are:
- Introduction to Transgender Communities
- HIV in Transgender Communities
- Creating a Gender-Affirming HIV Research Environment
- Clinical Considerations in HIV Research With Transgender Participants
- Trauma-Informed Care for HIV Research With Transgender Participants