Trans Leadership in iPrEx

By Adem Lewis / in , , /

>>Robert Grant, MD, MPH: It’s a pleasure
to be here this morning and to tell you about the leadership of transgender women in the
iPrEx study. We’re presenting some new information about transgender women’s experience in iPrEx.
This is being prepared for publication under the leadership of Maddie Deutsch and others
at the Center for Excellent at UCSF. So we’re very proud to be sharing this information
with you for the first time in the world here at the Trans Summit. So the iPrEx study was a clinical trial of
Truvada pre-exposure prophylaxis. It enrolled and followed participants between 2007 and
2010 and published its results showing the safety and efficacy of PrEP for men who have
sex with men and transgender women in November of 2010. And as you can imagine, we had a
big celebration that AIDS Day, imagining that this could impact people’s lives and change
the course of the HIV epidemic. I think that over the following four and half years we’ve
really learned a lot about how PrEP might work but we’ve also learned to appreciate
that the leadership of people in each of their communities and in their own lives is absolutely
essential for turning possibility into reality. There was a successful alliance between trans
women and the iPrEx study and I wanted to just highlight several events that really,
I think, helped us learn from each other. First of all, our study was sponsored by the
National Institutes of Health and the title of the study was “Chemoprophylaxis for HIV
Prevention in Men” and we very quickly learned that this was offensive and non-inclusive.
And so really at the behest and the insistence of trans women advocates, especially in San
Paolo and Lima, Peru, San Paolo, Brazil and Lima, Peru, the name of the study got changed
to “Chemo Prophylaxis for HIV Prevention in Men and Transgender Women.” And so we’re very
proud of having been able to move the U.S. Government and the NIH in this regard. At
a more local level, we had several sites who needed their study participants to be able
to present government-issued IDs in order to participate in the study and this can be
a problem for trans populations. And there was leadership by the study site in Ecuador,
for example, to allow issuance of government IDs based on current gender. They did this
to facilitate the participation of transgender women in our study but they also did it because
it was the right thing to do. The study just created an opportunity for this advocacy to
take place. iPrEx investigators in Brazil demanded that social IDs be accepted when
accessing government health services. And so again, this was a change that was made
because we wanted to welcome transgender women into our studies, but in fact this change
in policy changed how trans women access all healthcare in Brazil. They can now present
social IDs instead of their government IDs. Trans women were also on the CABs and key
leaders in recruitment at all study sites and they played a major role in communications
and the narratives of trans women were highlighted in both of the major movies to come out of
iPrEx that are still on the web. One is called “Voices of Hope,” the movie made before we
had the results of iPrEx, and “Voices of Choice,” the movie that we capitulated our findings. So trans were very much involved in iPrEx
and I am very sorry that this has been obscured in many of our publications. And working with
the UCSF Center of Excellence, we’re trying to change that and improve that and this is
information that is being written up under the leadership of Maddie Deutsch and this
describes in a more full way the trans experience in iPrEx. I think most people know about the
29 women who were in iPrEx. Mind you, everyone was born with an assigned sex of male but
there were 29 women who enrolled, or 1% of the cohort. But in addition, we had 296 people
who identified as transgender women and another 14 who did not identify as trans but they
were using feminizing hormones. So overall, 14% of the cohort was trans identified or
women identified or using feminizing hormones in a very active way. And for sure iPrEx trans women are not men
who have sex with men. There are multiple differences between the trans women in our
study and the men who have sex with men, including the trans women having overall less schooling,
less years of schooling, more sexual partners, more condomless receptive anal intercourse,
which is the major risk factor for HIV acquisition for both trans and MSM in this particular
study, and trans women were more likely to be participating in transactional sex. This
is just a few of the differences. There were multiple differences in living situations,
partnering across the board. So trans women were very different from men who have sex
with men. One thing that was not different was how well
PrEP worked when it was present in the body. And so this is a graph that shows on the X
axis the level of the PrEP drug, Tenofovir diphosphate in the blood of trans women in
red and MSM in blue. And on the Y axis we see the reduction in HIV incidents and so
lower numbers associated with a greater reduction in HIV incidents. And you can see that for
both trans women and MSM the drug works when it’s present in the body and to a similar
degree. But the difference was that trans women used PrEP differently and overall less
frequently than MSM in iPrEx. And this is a graph that I think is complicated but I
want you to take home the notion that use of PrEP and adherence to PrEP is complex.
It requires that people use it when they need it and they can stop using it when they no
longer need it. So we have to keep track of — or individuals who are PrEP users have
to keep track of how best to use PrEP in their own lives. So it’s different in that way from
HIV treatment. HIV infection, when present, is ever-present but HIV exposure is episodic.
And so what we need for PrEP to have an impact on our communities and turn the course of
the HIV epidemic, what we need is for individuals in very different social circumstances to
use PrEP when it’s needed the most. And here we did see differences between MSM and transgender
women, MSM on the left, transgender women on the right. Interestingly, transgender men
were more likely to use PrEP every day then trans women but trans women were more likely
to try it and try to use it at certain times. However, MSM were more likely to use it when
they were having more sexual exposure to HIV, whereas trans women were less likely to use
PrEP when they were having more sexual exposure to HIV. And for these reasons the overall
impact of PrEP in trans women tended to be less than it was for men. But it was all about
strategic dosing. So I think that one of our take home messages
from PrEP — and this really was inspired by the experience of trans women in iPrEx
— was that how PrEP happens, how it’s promoted in our communities, how it is used by individuals,
makes the difference. It makes the difference in whether PrEP stops HIV transmission or
whether it’s just another drug taken along the way. So it makes the difference, particularly
for women, including transwomen. And so how PrEP happens with respect to access, agency,
inclusion and community makes all the difference. And I want to highlight using this poster
from Planned Parenthood, which is really oriented towards cis-gendered women, I wanted to highlight
how we’re seeing substantial social similarities between the situation of cis-gendered women
and transgender women. And I am thrilled to hear some people talk about “we are all women”
and I want to include myself in that. So I wanted to end by talking about stigma
because I think that when we talk about the importance of agency it really is about stigma:
How do we mitigate stigma? And one thing that I think we can do every single day and each
one of us can do every single day is to be more mindful of the words that we are using.
And my fascination with words comes in part from inspiration from Nelson Mandela, the
former President of South Africa. And he said at Durban that: “It is never my custom to
use words lightly. If 27 years in prison have done anything to us, it was to use the silence
of solitude to make us understand how precious words are and how real speech is and its impact
upon the way people live or die.” And I think in HIV prevention we need to be more mindful
of our use of words. We need a new sexual health lexicon. Too often in HIV prevention
we use stigmatizing words and although our intentions are good, these words divide us
into an “us” and a “them.” And so even if our intentions are good, it’s still stigmatizing,
it’s still “othering.” So what do we say in HIV prevention? We often talk about “them,
their needs, high-risk people, risk behavior, targeting them for interventions.” We talk
about “discordant couples,” we talk about “recommendations” and we talk about “adherence.”
All of these words imply an “us” a knowing “us,” a generous “us” and a “them” who are
needy and in some ways weak. I think we need a new lexicon that is inclusive. We need to
talk about us, our desires for human connection and for sex. Instead of high-risk people,
I think we can talk about popular and affectionate people. Risk behavior can become intimate
sex. Instead of targeting, we can talk about mobilizing. Instead of discordant couples,
we can talk about people being in love and the power of that and the risks of that. We
can talk about choice instead of recommendations and we can talk about use instead of adherence
to medical indications. So we need a new lexicon. So I wanted to thank the UCSF Transgender
Center of Excellence, especially JoAnne Keatley, Jay Sevelius, Maddie Deutsch. And they are
assisting me in my transition toward cultural competence with regard to gender identities
and gender health. It’s a long road and I’m only part the way there but I thank you for
helping. So I wanted to end with a movie about hope. [Plays movie]

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