Every year, the New York State Department of Health hosts an Ending the Epidemic Summit, and this year on Dec. 3 and 4, New York stakeholders in HIV prevention and care gathered in Albany to share best practices, learn from one another, and continue their encouragement toward the goals of the New York governor’s plan to end AIDS.
During the summit, Zil Goldstein, M.S.N., RN, FNP-BC, AAHIVS, a family nurse practitioner and the associate medical director for transgender and gender nonbinary health at Callen-Lorde Community Health Center in New York City, gave a TED-like talk entitled, “Working Towards Viral Load Suppression in Transgender Women of Color.” I sat down with her to ask about her findings and insights.
Terri Wilder: I think that there’s always a lot of conversation, particularly in New York State, about meeting the needs of transgender people. But I think that your talk, really drilling down on the second point of the governor’s plan, which is making sure that folks are connected to care and are virally suppressed, was particularly important in this conversation.
I wanted to start by talking a little bit about some of the data that you presented. You took us through some research that has been published in terms of when we look at black people who have HIV; then we looked at HIV data related to gender. And then you focused on the intersection of a black trans woman who has HIV.
I wonder if you can share with our readers the research that you did around this topic and some of the things that were actually really disheartening to hear from your talk.
Zil Goldstein: Sure. The things I see in practice every day is that black trans women come to me saying that they’ve never felt comfortable going to a health care provider, or just don’t feel like they’ve been taken seriously when they go in for health care. You know, I wanted to get a more global look at that and look at the data around black transgender women getting HIV care. And, you know, it is pretty grim.
One of the studies that I shared interviewed transgender women at Black Pride events and found that only 24.5% of black transgender women are virally suppressed. So, we see only 41% of transgender women are diagnosed.
So there’s a huge cutoff there, just in terms of people having access to testing in venues that make them comfortable. You know, we’re not even getting the tests to the right people, let alone bringing those people into care, keeping them in care, prescribing them medication, and helping them take medication so they can become virally suppressed.
TW: The research that you’re referencing is from [Leigh] Bukowski. It was data from their Promoting Our Worth, Equality, and Resilience (POWER) [study], where they collected data from 2014 to 2017 at Black Pride events in six U.S. cities, where the participants completed a behavior health survey and were offered on-site HIV testing.
Let’s talk about some of the other things that were in that article. They put together an HIV care continuum for black transgender women, and I wonder if you can take us through that continuum. Because I’ve actually never seen this before. And this is really great, because it came out Dec. 1 last year, of 2018. If you could just take us through that cascade that was in that article; I think that would be really important for folks to have an idea of what that looked like.
ZG: Sure. So, you know, among all of the HIV-positive folks that they spoke with at these events, 41% knew their status. So, 41% of the HIV-positive black trans women they spoke with had been diagnosed with HIV prior to the interview; 39.7% were linked to care, which is actually fantastic. So, that’s, you know, compared to the 100% of HIV-positive folks, 39% are linked to care; and that’s 96% of the folks who actually had a diagnosis.
Again, we see a similar figure. There’s not much of a drop-off: 96% of the folks who are linked to care are retained in care. So, they’re staying in care for long enough to see results.
And then 90% of the folks who stay in care are prescribed ARVs—antiretroviral medication—to treat HIV. And then we see another sharp drop-off, where only 69% of the people who are prescribed ARVs are virologically suppressed.
That is really sad. That’s where we get our 24.5% of all people diagnosed, of all the black transgender women diagnosed, with HIV actually becoming virally suppressed. We see a big drop-off, in terms of folks getting diagnosed, and then another big drop-off, in terms of folks who are prescribed ARVs being virally suppressed.
TW: When you saw this cascade, was this something that you were able to kind of reflect on and say, “Yes. I’m seeing this in my practice,” as well?
ZG: We definitely see similar numbers at Callen-Lorde. So, across our clinic as a whole, we have a very high viral suppression rate—around 95% of the folks that we see here—and we see 82% of our black transgender women who are virally suppressed. So, you know, 95%, compared to 82%, is a big difference.
There’s a lot of work to be done, both in terms of getting people into the clinic; and then also training providers to treat people well once they come in the door.
TW: You also mentioned that you had three suggestions for folks in the audience: How do we tackle reaching this particular community: serving them; getting them tested; if they do test HIV positive, helping them to get linked to care? And I’m wondering if you would share your suggestions that you had for the community.
ZG: Sure. The first suggestion is getting better data. You know, we have to have New York State collect data around transgender people in the same way they collect data around any population. Going to Pride events isn’t necessarily the best way we have to count HIV diagnoses. We would want the data available for the state for transgender people and for black transgender people, in the same manner they present for any other population.
So, you know, you can go online and visit the New York State ETE Dashboard, and you can look at cisgender women and cisgender men, and Latinx people and black people. But there’s no care cascade available online for transgender women, let alone transgender women at the intersection of racial discrimination as well as transphobia.
TW: And your second suggestion was really speaking to the medical providers in the audience.
ZG: You know, one of the things that I hear from my patients is that they often are treated poorly by medical providers. So, medical providers bring their own biases into practice, whether they’re conscious or unconscious. And doing the extra work to undo those biases can be as simple as a medical provider taking a deep breath and saying, “Hi, how are you?” when they walk into the room to see a patient, instead of just jumping into their chart and getting their medical care. Or making sure that all of the patient’s issues are addressed before the medical provider addresses their concerns about the patient’s health. Things like that don’t necessarily happen when providers are uncomfortable working with trans people or inexperienced working with trans people.
TW: One of the other things that you talked about was something that those of us who work in HIV may think is pretty obvious. You talked about, “Check for the right names and pronouns every time you see a transgender person, before you go into the exam room.”
ZG: That is really the very most basic thing a provider can do, is take that expectation that people are going to be misgendered and make sure it’s not met. You know, it’s not just the medical provider, but everyone that interacts with the patient in the office, down to the janitorial staff, who need to be aware of the needs of transgender people to be called by the correct name and pronoun.
TW: Right. And you finally talked about, in your third suggestion, about really making medical care fun. And I’m just wondering if you could just share what you mean by that.
ZG: Sure. I mean, making medical care fun can take a lot of different shapes. For me, I work in a pretty typical medical office, and so a patient comes in and there’s not much I can do, other than do my best to build a relationship for that patient, to talk to them about their life and what’s important to them—their hobbies, their family, their dog—whatever it takes to sort of forge that relationship so they can get excited to see me as a person. And then we can translate that into excitement about taking care of their health.
ZG: I think a lot of people who aren’t going into the medical office need to be sort of lured in with activities that they’re interested in. I’m not talking about just going into the ballroom scene and doing testing. But maybe having a community center that has makeup classes that bring people in, and then offering HIV tests to everyone who comes in for makeup class. Or, you know, having a Pride event that is focused on bringing performers who are relevant to the community in and then offering testing at the Pride event. Or having a Pride series—not just making it one event, but having a series of activities that are relevant to the people in the community.
I’m not a part of the community that we’re talking about here. You know, I’m a white trans woman. I have a lot of privilege that comes from being born white in the United States. And I don’t necessarily know what the best things are to bring people in. So, you know, really engaging with the community to find out what the best way is to get people to come in and funding those things, with medical care right alongside.
TW: One of the other suggestions you had was creating home care programs where medical providers can go to pumping parties to test for and treat HIV. Can you talk a little bit about what are pumping parties, and why they might be a good access point?
ZG: Sure. Pumping parties are when people inject silicone into their bodies to create a more feminine-appearing shape to their bodies. So, people will get silicone injected into their hips to make their hips wider, or into their butt to make their butt bigger. And that’s what pumping is.
Pumping parties are where someone who is usually not a medical provider throws a party and works with a lot of people in one evening. It’s sort of like a Tupperware party; but instead of Tupperware, people are injecting silicone.
It’s not a particularly healthy practice. I see a lot of folks who have complications from it. But it is something that’s sought out by the community. And so anywhere we see transgender women of color going, we should be there offering medical care.
I think that could be a great way to engage folks and show that we are aligned with what people want—and not trying to tell them that they’re doing their lives wrong, but trying to tell them, “Anywhere you are going to help with your transition, we can offer additional services.”
TW: I think your example of—you’ve used a pseudonym for a client, named Alexis—was a really good example of helping, as a New Yorker, to contribute to the governor’s plan to end AIDS, but also meeting her needs, as well.
ZG: Alexis, like you said, isn’t the real name of the person, but just is a name that I use to refer to her. She’s someone that I met going to a community group, just to present on the medical benefits of transition. I had talked to the people who run the group, and they were like, “Yeah. A lot of our girls are getting street hormones. And we want to talk to them about what the benefits are of seeing a doctor.” And so, I put a presentation together that was just sort of like pictures of different things that are sold that then my clients have shown me that they have been told are hormones, and that they’ve paid hundreds of dollars for. And then just sort of breaking down what is in them and what the hormone concentration is, and whether or not they actually contain what people are paying for—whether or not they actually contain the estrogen that people are paying for.
A lot of the time, we can get more effective treatment. We can get better estrogen levels and better anti-androgens coming in to the doctor. And that was what I was presenting about: the things that I can prescribe that are covered by insurance, that are both safer and more effective—and also cheaper than what folks are getting from nonmedical sources.
And so, Alexis was very interested in this. She came in, and she was like, “Look. This is what I’ve been doing. And this is what I want to do. And you can’t tell me to do anything else.”
And I’m like, “Well, you know, I can give you other hormones that are going to be better at raising your estradiol level and lowering your testosterone level; and that’s going to result in the body changes that you’re looking for.”
I had to get an authorization for the estrogen from her insurance. But it did get covered. And she went from paying $200 a month for hormones to paying nothing.
She also, the first time she came in, was willing to take an HIV test—which saved her life. She came out positive. And we started her on meds right away. And she very quickly became undetectable and was able to avoid all of the horrible things that can happen when someone’s immune system breaks down from HIV.
TW: That’s a great example of how she came in with, “Look. This is what’s important to me.” And you kind of explained: “You know, I can give you prescriptions for this. It’s going to be covered by your insurance. So, it’s kind of a win-win. We give you this great treatment that you want, and it saves you 200 bucks a month.”
ZG: Exactly. And, you know, I think she was also pretty confrontational at our first visit. And that’s not something that’s unusual in working with transgender people. You know, we can be very worried that we’re not going to get the care that we need. And that concern can come off as aggression or confrontation. And so just listening, not to the words, necessarily, that are coming out of someone’s mouth, but the feelings that are behind them, can really help build empathy on the provider’s side to what’s going on for someone.