How ignoring trans populations is hampering Africa’s fight against HIV

Though transgender and gender-diverse people are 13 times more likely to acquire HIV than the rest of the adult population, according to the Joint United Nations Programme on HIV/AIDS, or UNAIDS, researchers have hardly looked at the barriers that keep members of the community in sub-Saharan Africa from getting tested — and, if they are positive, started on life-saving treatment.

An attempt to determine the global impact of HIV on transgender women in 2012 found there was no quantitative data available from Africa. Little has changed since then, activists say. The result is an absence of even basic information, like HIV prevalence, to help build effective programs and to counter the stigma and discrimination they say keeps some countries from even establishing those programs in the first place.

“Data can help in terms of making sure that government entities actually adopt specific interventions,” Lawrence Phiri Chipili, the executive director of the Lesbian Intersex Trans and other Extensions organization in Malawi, told Devex. But without more research that directly involves the transgender and broader LGBTQI+ community, “it’s going to be difficult to actually end HIV as a public health threat by 2030” — a goal set by UNAIDS.

A first-of-its-kind study out of South Africa, published in April, actually set out to measure HIV prevalence among transgender women in three cities by closely engaging members of those communities. The research reveals staggering rates of HIV within the population of transgender women — as high as 63% in Johannesburg, compared to an average national prevalence of 13.7%. But it also points to gaps in the continuum of HIV services, including maintaining treatment.

Researchers say those insights could help set future programming priorities and spur more specific investigations — with the guidance of transgender women — into the kind of HIV services that might be most beneficial.

“The results are powerful evidence that trans-led HIV interventions where trans people are key personnel and placed as decision-makers can highly benefit the programming, and it’s time for funders as well as cis researchers to recognize the power of community engagement and invest in the training and leadership of trans people,” Arjee Restar, an epidemiologist at the University of Washington, told Devex in an email.

Advocates warn that transgender women cannot be left behind if the AIDS epidemic is going to end by 2030. To reach that goal, UNAIDS set targets of 95% of people with HIV knowing their status, 95% of that population on treatment by the end of 2025, and 95% of people on treatment registering undetectable levels of the virus, which can happen if they strictly adhere to their regimens.

There is little data to show what progress transgender women are making toward the UNAIDS targets. Leigh Ann van der Merwe, one of the authors of the South African study, told Devex that they often had to extrapolate information from studies of men who have sex with men, which sometimes include transgender women.

Van der Merwe, a transgender woman, said the recent research was “really inspired by what was going on around me. … We knew anecdotally of the problem, but in the scientific world, if it’s not captured with the scientific methodology, it doesn’t exist,” she said.

Their findings bore out her anecdotal experience. The study, conducted in two other South African cities besides Johannesburg, found 44% HIV prevalence among the transgender women surveyed in Buffalo City and 48% prevalence in Cape Town.

The challenges extended across the spectrum of services for testing, treatment and care available to these communities. In Johannesburg, 54% of HIV-positive transgender women knew their HIV status, but that number cratered to 24% in Cape Town. And in Johannesburg and Cape Town, less than half of the transgender women on treatment were virally suppressed, leaving a risk of transmitting the virus.

Van der Merwe said she was also surprised by the amount of violence that transgender women experience. Nearly a third of the participants in Johannesburg said they had experienced some kind of violence because of their identity.

“Violence is such a big, big issue in relation to HIV infection, treatment, care and support in South Africa,” she said, and one that people designing programs need to consider.

The findings are already guiding her advocacy, van der Merwe said, in her role as part of a technical working group on LGBTQI+ issues for South Africa’s National AIDS Council and as the chair of the LGBT Provincial AIDS Council.

Transgender activists around the region are also interested in exploring how this data could be used to push back against the stigma and discrimination that limit the programs that could make it easier for transgender women to access and maintain HIV services.

In Malawi, where same sex activity is criminalized, the LGBTQI+ community faces discrimination from the government, Chipili said, but also from service providers. And interventions that could make people feel more comfortable, like providing HIV testing at centers that are run by members of the LGBTQI+ population and specifically tailored to the needs of that community, are ignored by the government.

It will be crucial to use research to design programs and then continue to study what is working to refine those interventions, he said.

That will require getting the transgender community involved in both research and building the programs, van der Merwe said. To conduct their study in South Africa, researchers engaged members of the transgender community from the outset, working closely with civil society organizations to set up the study. Transgender women from across South Africa were part of the steering committee that guided the study and the research team lent support to advocacy work for the transgender community.

Drawing on the lessons from the new study, Van der Merwe is already at work on follow up research on how to bring HIV prevention, treatment and care services closer to the transgender women who need them.

“It’s not just how are we going to collect the data?” she said. “It’s how are we going to use this data and how is this going to be useful to us?”

By Andrew Green