Visibility Matters: HIV Community Experts on the Presence of Trans and Cis Women at AIDS 2020

Compiled by Jenna Conley and Olivia G. Ford

At the 23rd International AIDS Conference (AIDS 2020), we asked a variety of conference attendees and presenters the following question:

When it comes to cis and trans women, what did you find most important, compelling, and/or interesting at AIDS 2020?

Judith D. Auerbach, PhD, Sociologist and Professor, Department of Medicine, University of California San Francisco; Co-Chair of The Well Project's Board of Directors

First was the presence of trans women across the main conference agenda – in plenary, oral abstract, symposia, satellite, and other sessions. In the past, attention to trans women (and trans people in general) was predominantly found in the Global Village, where community programs, performances, and advocacy are profiled. But at AIDS 2020, there were numerous scientific sessions focused on trans women; and what really was striking at this conference was the participation of trans women as presenters in these.

One great example was the satellite session on PrEP demonstration projects for trans individuals, hosted by the California HIV/AIDS Research Program (CHRP), which historically has supported academic-community research partnerships. The presenters included not just the non-trans Principal Investigators of the projects, but also trans members of the research teams – as researchers, not, as is usually the case, as "community" representatives. Without having to make a statement about it, the actions of these presenters made a strong case for building research capacity among trans women (and trans men).

The second thing that struck me was how cis women in the U.S. seem to remain an after-thought in important clinical trials of HIV prevention methods. In just the past year or so, we have heard the promising results of two large clinical trials of different PrEP modalities – one (first reported in February 2019) of a new drug (Descovy) and the other – just presented at AIDS 2020 – of the first long-acting injectable product (cabotegravir) – neither of which included cis women at all. In both cases, we are told that additional studies are in process with cis women, but meanwhile, the availability and use of these products by cis women is delayed until the evidence from these latter studies is known, while access is granted to others (cis men and trans women) as soon as the products are approved by the FDA. These issues were highlighted in a great symposium session, titled "It's a Man's World: Are Women Losing Out When it Comes to Biomedical HIV Prevention?" hosted by SisterLove.

Lucy Wanjiku, Founder and Team Leader, Positive Young Women Voices

The resilience of women to attend the conference as the world went digital has been our superpower this season. I was proud that despite it all, despite the digital divide and the intersectional inequalities, we showed up and showed out. We talked of what is important to us from funding communities, to U=U becoming an absolute reality for women in our diversities. We did history proud.

 

Allie Carter, PhD, MPH, Research Fellow, Kirby Institute, UNSW Sydney; Adjunct Professor, Faculty of Health Sciences, Simon Fraser University, Canada

I'm trained as a social epidemiologist, which is about numbers in context. But more and more, I find myself drawn to real-life stories of women living with HIV bringing change in society. The most important, compelling, and interesting aspects of AIDS 2020 for me were the diverse voices that make up our community. Indigenous voices. Trans voices. Black voices. Youth voices. Their stories of resilience, of confronting HIV stigma, of advocating for equal rights and empowerment in the face of very serious threats – they are inspiring and also fiercely profound. How some women are able to move through darkness and find health and hope can teach us a lot about pathways to healing and recovery. This has as much do with structural equality as personal strength.

Rikki Nathanson, Director of Housing Programs, Casa Ruby

Having been actively involved in these conferences going back 10 years, it certainly was a surreal experience. I am so used to the hustle and bustle of the live, in-person gatherings so this virtual gathering was a somewhat strange experience. Firstly, I found it a bit difficult to follow the program so I wasn't really quite sure what was going on and what exactly to follow.

That said, as a trans woman, I feel that there is still a lot more that needs to go into addressing the needs of trans people in their fight against the HIV virus. Using a human rights approach, the medical response must be holistic – taking into account trans-affirming health care standards. Ideally, these should directly involve the trans community themselves in the service delivery.

Vignetta Charles, PhD, CEO, ETR; Member of The Well Project's Board of Directors

Seeing Dr. Celeste Watkins-Hayes' plenary was transformative. To see the International AIDS Society feature an intersectional, social scientist, Black woman leader on the "main stage" was a powerful testament to women's leadership in the "deep unpacking of context" that is necessary for us to not only address the HIV pandemic but eliminate AIDS as a public health threat by 2030.

I was also profoundly moved by ETR's featured poster on the Transgender Professional Development Institute, which created a space for transgender professionals to cultivate technical skills vital to their success in the HIV workforce. To support the transgender HIV/AIDS workforce, ETR and a team of expert transgender consultants designed a curriculum catered to supporting high-impact HIV programs and the transgender staff who make them happen.

Ciarra Covin, Founder, Healing is Voluntary; Member of The Well Project's Community Advisory Board

When it comes to cis and trans women, I feel that the most interesting thing about the conference was the lack of sessions targeting primarily women and their needs. I mean, I came across a few but it seems that our needs ought to be prioritized as we are so largely impacted and accounted for in new incidence. We deserve and need multiple conversations to address our diverse and complex needs. Not just some slides within a conversation about something else.

Karine Dubé, DrPH, University of North Carolina Chapel Hill, Member of The Well Project's Women's Research Initiative on HIV/AIDS (WRI)

Dr. Eileen Scully presented on the topic of "Women and the Cure: Challenges and Opportunities" at the AIDS 2020 pre-conference. Data about women and HIV cure-related research suggest important sex-based differences that should not be overlooked. For example, women may have lower HIV DNA and RNA levels than men, as well as different correlates of HIV reservoir. Concerns about reproductive toxicity should also be carefully considered in HIV cure-related research.

Dr. Scully highlighted the mismatch between areas of HIV prevalence and location of HIV cure-related trials around the world. Increased community engagement will be necessary to encourage participation of cis and transgender women in HIV cure-related trials to reflect the burden of the HIV epidemic. Importantly, Dr. Scully's AIDS Clinical Trials Group (ACTG) study testing vorinostat and tamoxifen in post-menopausal women showed that it was possible to recruit women in HIV cure-related research.

Davina Conner, Board Member, Prevention Access Campaign, International Speaker, Advocate, Podcast Host, UequalsU Ambassador

When it comes to women of trans experience, I did see a few sessions but for me, I thought there could have been more. We just cannot forget about a community that has been pushed to the side for so long. What was compelling to me was how Brazil treated the trans community and how they fear for their lives – not because of being a woman of trans experience, but the fear of the outside world once they step their foot on the ground. I was in tears and just knowing that a human being can be murdered because of how they identify is heart-breaking. How the stigma has allowed the community in Brazil to turn their heads while a person who is trans is being bullied, beat, or murdered on the streets right in front of people who are walking by – and the same issue happens here in the U.S. as well. What is important to me is that I treat everyone equally, love, and embrace all human beings the same no matter who they identify as.

Sessions related to UequalsU and women: There was only one so that was interesting to me – because we all know that women are diagnosed with HIV at a high rate but Black women are disproportionately affected. There are 1 and 9 who do not know that they are even living with HIV. There should have been more sessions on women and UequalsU as there are still so many women who do not know about the message; and those that do are having a hard time believing it. Learn more about UequalsU and women.

Sharing this is imperative to help with the internal stigma but to also help to get people back in care who are out of care. UequalsU leads to ending the epidemic.

These are two things that are very compelling to me and should have been addressed more.

Tlaleng Mofokeng, MBChB, Sexual and Reproductive Health and Rights Expert, Johannesburg

As clinicians we must not be indifferent about the interrelated sexual health, sexual pleasure, and sexual rights. We must affirm the lived experience of all people and be deliberate with creating safer inclusive spaces. At this global arena for policymakers, pharmaceutical, biomedical development and advocacy, pleasure as a standalone topic is not discussed.

Transgender women are often excluded by public health laws and policy and therefore it is crucial to "(re)center the margins" by being holistic in clinical approach. Sexual pleasure is a human right, and this is a focus area that still requires more attention in spaces such as the International AIDS Conference.

Lee-Or Scarlat, Youth Advocate, LYRIC Center for LGBTQQ Youth, San Francisco

At AIDS 2020 I was fortunate to be exposed to incredible work being done globally to support cisgender and transgender women, as well as non-binary folks, in preventing or managing HIV. However, unsurprisingly, I think that the most important take-away from AIDS 2020 for me is that there is still a huge lack of representation of cis and trans women of color in HIV/AIDS leadership.

I saw only one session that explicitly addressed the risk of domestic or intimate partner violence that folks living with HIV face. In a national moment when we are honoring the names of and demanding justice for Black trans women whose lives have been lost to systemic violence, one session is not enough.

On an institutional level, many men in positions of power in the field are putting together the pieces slowly: that HIV treatment and HIV prevention cannot be accomplished without an intersectional framework that addresses heterosexism, racism, domestic violence, health inequity, sexual pleasure, and reproductive justice. We in the community have always known these things to be true. And so, there is much work to be done in bringing funding and power back to our most marginalized communities. I am inspired by the work of all women and femmes of color that I saw speaking truth to power at AIDS 2020 and I am looking forward to hearing many more of these voices in the years to come.

Danielle M. Campbell, AIDS Treatment Activists Coalition

"Weight watching" at AIDS 2020: Treatment-emergent weight gain has been observed in several recent studies among people with HIV while taking certain HIV medications. At AIDS 2020, Dr. Sharon Walmsley of the University Health Network presented retrospective data on weight change, particularly weight gain, among treatment-naïve women initiating dolutegravir in the ARIA study. The ARIA study was conducted in 12 countries among HIV treatment-naïve women randomized to either the dolutegravir (DTG) or atazanavir (ATZ) group. Dr. Walmsley shared that weight gain was higher: 1) in both groups among women of African descent, and 2) when taken with tenofovir alafenamide (TAF), with most of weight gain happening during the first 48 weeks of the study.

Weight gain and obesity may have adverse health impacts on the lives of women with HIV in specifically those of Black race, a group that makes up more than 50% of global HIV prevalence cases.

Rachel G. Logan, PhD, MPH, CPH, Public Health Consultant

I think conversations around the social and structural determinants of health highlighted the continued need to center women in the fight to end the HIV epidemic globally. There were several appeals to encourage the inclusion of cis and trans women in HIV research as these populations experience unique vulnerabilities to HIV that we urgently need to address.

 

Laura Lazar, PleasePrEPMe

AIDS 2020 paid a lot of attention to the needs of cis and trans women. However, the continued lack of real data – or rather, the lack of person-centered, community-driven policies/programs/solutions informed by that data – was also glaringly obvious. The brilliant speakers who highlighted these issues made the continued gaps very clear, as they have done in conference after conference. While this year feels different in more ways than just the coronavirus – including the current movement for justice for Black and Indigenous People of Color in the U.S. and across the globe – it is imperative that the calls for change, data, and community inclusion be sustained, acted upon, and used to hopefully (and finally) create lasting impact.

View more conference coverage at The Well Project's Coverage of AIDS 2020: Virtual and HIV2020 Online

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