'I Decided to Do Something About It': Cecilia Chung on Research Led by Trans People Living With HIV

Cecilia Chung
Cecilia Chung
JD Davids

This November, the 2017 National Transgender Health Summit in Oakland, California, offered a rarely-found look at a range of research and programs in and about trans health. Despite lasting only two days in November (after one initial pre-conference day), the gathering was packed with an at-times overwhelming selection of workshops, panels and discussions. Trans health research is a hot topic, as noted in the workshop description for Cecilia Chung and Kellan Baker's roundtable on the intersection of research ethics and policy:

There has never been a more exciting time in transgender health research. After years of struggle, funding for and interest in research exploring the health of transgender communities has exploded: trans health research is the New It Girl! This is critical because research is a key foundation of policies and programs that can help close health gaps and improve access to care for transgender people.

The session provided the opportunity to "discuss how researchers, advocates, and community members can work together to create ethical strategies for advancing a transgender health research agenda that effectively seeks to address major gaps in knowledge, informs the development of policies that impact transgender people's lives, and respects the rights and expertise of transgender individuals."

And toward that goal, Chung -- who leads Positively Trans at the Transgender Law Center -- walked us through the development of an unprecedented survey designed by and for trans people living with HIV, showing how this trans-led research not only generated findings at odds with the priorities of many programs currently serving trans people with HIV; it also put the power in the hands of the majority-trans-women-of-color crew that designed the research to advocate for policy change.

It was a fascinating look behind the scenes of one of the most important efforts shaping the agenda on trans and HIV issues today, and fortunately I'd clicked "start" on my recorder to capture her remarks. Take a look, and enter the new world of trans-led research that might finally turn the tide toward trans justice in and beyond HIV.

Related: Positively Trans: A Community of Transgender People With HIV Standing in Their Truth

Cecilia Chung: There has always been a gap in terms of the HIV movement and how they're providing services to people of color, and to trans people, and trans people of color. So I decided to do something about it. At the time, the Elton John Foundation was contacting us and asking us if we had a proposal to submit. And so I said, "Yes, I have a proposal to submit." And so we got the first major funding from the Elton John Foundation.

Because I really wanted to have a community-driven approach, the first thing that we did was to convene a national community advisory panel that's made of predominantly trans women of color with HIV. It's geographically quite diverse. It's from Detroit to Florida, and California to New York.

We had a whole day of meetings just to go over some of the life issues that people experience. They broke out into smaller groups to talk about it. We had the help of an ally researcher that we were able to partner with. We pay her to do research for us -- so it's a big difference between that and a researcher paying a trans person to help recruit and collect the data. And so it becomes a very community-driven agenda, in terms of what questions we wanted to ask.

From the get-go, we were adopting the Denver Principles, and we really looked at how to support transgender peoples living with HIV and their agency to change.

With that in mind, we had discussions around how long the survey should be. So, this is a very generalized comment, but for lots of trans people, me included, I have a short attention span. I think that's mostly because of the trauma we experienced. And so we want to make sure that the survey is trans friendly, in terms of time they spend on it, and to make sure that the questions were relevant enough. So we started looking at what questions to pose for ourselves.

We were able to break them down into five or six domains that include economic justice, access to care, access to legal support, and a sense of safety and stigma.

We hear a lot about what kinds of services trans people need. And so the board suggested, "Why don't we ask directly what they want?" instead of guessing and doing a whole bunch of long-ass analyses and come up with some numbers that the community might say, "No, missed me."

We developed a survey, and we had the survey open for about two months. The challenge at the time was because it was the same times when [the National Center for Transgender Equity] was doing its large-scale, nationwide survey. So most people focused on that, and thought that that was the survey that we were all collaborating with. This was a separate survey that's a little bit similar, and less triggering.

Community Needs Are Not the Same as Providers' Perceptions

The initial analysis was really interesting, in the way that it confirms a lot of things that we believe. For instance, community needs are not necessarily the same as providers' perception of our needs. When HIV providers see us, they think about viral suppression; they think about antiretroviral treatment. But for us, when we see a provider for the first time after so many years, it was to make sure that we can get access to our hormone replacement therapy. We hear a lot of stories about providers using that as a bargaining chip, and saying, "If you don't get clean and sober, I'm not going to give you hormones," or, "If you don't get on HIV medications, I don't give you hormones."

This way, it's kind of a non-confrontational way to show that this is the collective voice of the community, and this is what it reflects.

The first priority was gender-affirming health care. That's a no-brainer. And it didn't surprise us. The second was about interactions of hormones with other medications. That's not a surprise for us, either. The third one is access to mental health services. That was a little bit of a surprise, because it came before the HIV treatment. And the fourth one was actually about whole-person well-being -- like nutritional counseling, emotional well-being, and spiritual well-being. So that kind of caught us off guard, that one. About 52 percent of the participants actually identified that as one of the priorities. And the fifth one was the antiretroviral treatment.

Data as an Advocacy Tool

We're able to use this as an advocacy tool and schedule meetings. Well, this was still under the Obama administration. And so there were a lot more allies in the White House that were very receptive of this. So we were able to organize the community consultations with the Office of National AIDS Policy (ONAP.)

ONAP currently doesn't have a director because the current president didn't appoint one. And we don't expect him to appoint one anytime soon.

We had some really great allies [in the Obama Administration]. We had consultations with about 40 community members who are researchers, providers, social workers, and community advocates.

That was a very gratifying experience for most people. We went round robin, and we were wagging our fingers and saying what you didn't do. This was the first time that we actually got to say that, as a community, to HRSA [Health Resources and Services Administration, which oversees the federally qualified Community Health Center Program, as well as the Ryan White Program], to CDC [Centers for Disease Control and Prevention], to ONAP, and to SAMHSA [the Substance Abuse and Mental Health Services Administration].

The amazing part was that they actually were very receptive, because it was also the time when they were rolling out the National HIV/AIDS Strategy for 2020, and there's no trans indicator [measurement] when they were developing that, that's what the community input [focused on]. We said you can't just leave us hanging. You have identified us as one of the priorities in the first National AIDS Strategies. You can't just identify the same things and put us in a footnote for the second part. So we were pushing really hard.

They continue to engage us in the conversation. We had other meetings at the Creating Change conference, where some of the federal partners came in and presented what they have on that data. It opened up a lot of opportunities for communities to ask questions.

The difference this time is that the community members already had the data.

We have published a one-page fact sheet on some of the key data: priorities for legal services; priorities for health services; and also the demographic makeup of our surveys. I'm really proud of our surveys, because in our surveys, over 65 percent identify as trans people of color.

Because of the process, the board members became very interested and continued to engage in the conversation. We trained them on the data and helped them understand how to talk about the data, so that they own the data. That's the other part of our mission. We can help the community to get to a place where they're all literate in data, and how to analyze it and use that in their advocacy work.

Right now as a team, we help develop these presentations and work with our community members who are interested in using the surveys in order to do the advocacy work. New York advocates used our data to successfully advocate for providing services to HIV-negative trans people, because that's such a high need, [through a special needs insurance program for Medicaid]. So they're now providing services to trans people, with or without HIV.

And that's exciting! It feels like we are on the right track of things.

Trans Masculine Folks

We actually even have more than one trans guy who participated in the survey -- although, you know, because the number of trans men living with HIV responding to the survey is limited, we weren't able to get enough numbers to analyze. But it gave us indicators that the kind of violence that the community experiences is across the board.

We're hoping that we can develop another survey, specifically for trans masculine folks, to look at how violence shows up in their lives, and how that impacts their life experience.

Those are the other areas that most people have been saying that it's like a unicorn. When you talk about trans men with HIV, you know, most of the researchers say that it doesn't exist, because it's a very low risk, or a low-incidence population. I don't know what you base those estimates on.

I was using this as an opportunity to continue to challenge some of these misconceptions. If we don't hear from the group we don't really know how to help them. Even if it's just about 10 people, we want to make sure that those 10 people were listened to, and there are services that stand specifically for them.

We can't do HIV prevention and treatment just for one group, and not create some equity for the rest of the community.

We're hoping that, as we continue, we can help the positive trans masculine members in our group to do some organizing for trans men living with HIV. So, for the first time, we were able to put a cohort of trans men living with HIV together and put them into a digital storytelling workshop. They get to share their experience through video. We're going to release them probably closer to the middle of next year.

Co-presenter Kellan Baker also added this perspective:

In terms of the CDC's programming, and the Office of National AIDS Policy, the idea that transgender men are vulnerable to HIV (and are, in my personal opinion, who are on the verge of an epidemic among trans men) is not something that is ever taken into account in policymaking. That's a perfect example of the type of research that's really not being done that is going to lead to missed opportunities in the future when we're putting together the next National HIV/AIDS Strategy and there's no information about HIV trans men.

This allows the really vulnerable to be lost, unless there is a pipeline of research that's looking specifically at how to translate those community experiences and concerns into research that could be used by policy leaders.

This transcript has been lightly-edited for clarity and length.