Transgender health research faces data challenges related to HIV modeling

TTransgender people have a higher than average risk of contracting HIV. And yet, when epidemiologist Diana Tordoff began analyzing how transmission of the virus in the U.S. might change over the next decade with more testing and preventive PrEP medications, she found that there wasn’t enough existing data on trans and nonbinary people were to provide answers to the question for these population groups.

“You need at least prevalence data,” Tordoff said: How many trans men in the US have HIV? How many non-binary people? The Centers for Disease Control recently published this some data on HIV prevalence among transgender people based on public health surveillance data, but gender identity data are not consistently collected across local jurisdictions. This means people will almost certainly be misclassified because the data is collected nationally, Tordoff said.

There is a lack of data on LGBTQ+ people as a whole, meaning there are often no definitive answers to basic questions – a shortcoming with far-reaching implications for building the mathematical models intended to help policymakers develop approaches for the prevention and treatment of HIV.

“The exclusion of any population, especially transgender people, from these models that have a particularly strong influence on policy is problematic,” said Tordoff, a postdoctoral fellow at The PRIDE Study at Stanford University.

That’s because, in a mathematical model, if you don’t explicitly include a group, it makes it appear as if they don’t exist – making it impossible to look at the potential impact of a particular policy or program on that group.

Historically, there has been more focus on transgender people in HIV research than in any other area of ​​healthcare, but the lack of inclusive models shows that this is still not enough. Researchers say addressing the underlying data gaps would not only help improve HIV policy, but could also improve health care for queer people as a whole.

“There are consequences for not having the data, but not having the data is also a consequence of not valuing the lives of transgender people,” said Brian Minalga, one of Tordoff’s co-authors and deputy director of the Office of HIV/AIDS. Network coordination at the Fred Hutchinson Cancer Research Center.

‘The study was not designed with transgender people in mind’

Mathematical models are like simulations run on a computer. Researchers build the framework of a real-world situation from the ground up and then populate that frame with real-world data to see how it might play out. The aim is to outline what is likely to happen in a given population when factors relevant to how a disease spreads are included, or how an intervention might prevent that spread. For HIV, this includes patterns of sexual behavior, condom and PrEP use.

There are probably hundreds of mathematical models focused on HIV, dozens of which are the most widely used. But only seven models include transgender people, said Tordoff, who co-authored an article on the barriers to developing more inclusive models around the world. Journal of the International AIDS Society in June. One of the seven, the AIDS epidemic model 2023, is used by 13 Asian countries to estimate national transmission trends. But the others are smaller and less customizable equations. Several have been conducted in Peru, including one that analyzed how PrEP might work influence the transmission of HIV among men who have sex with men and trans women in Lima.

But even among these more inclusive models, there are two major problems, Tordoff and her co-authors wrote.

First, the available models only include trans women; none looks at the impact of HIV on trans men or non-binary people.

“We have a tremendous amount of the same kind of information,” said Tonia Poteat, a professor at the UNC Gillings School of Public Health who focuses on HIV and trans populations. And the data on trans women is still inconsistent systematic review The research on HIV prevalence among transgender people shows that most studies use convenience or “snowball” sampling methods (where participants are asked to recruit others), which could bias estimates. In that study, HIV prevalence among trans women was estimated at 18.8%. But the US Transgender Population Health survey estimates the prevalence among trans women at 6.5%.

The second problem is that the models assume that trans women only work with cisgender men. “You just know it’s not true,” Tordoff said.

There is evidence that access to gender-affirming care, such as hormones, has increased can increase treatment compliance to other forms of disease prevention among transgender people, including HIV prevention measures such as taking PrEP and being tested for STDs. Tordoff would like to see a model that estimates how increasing access to gender-affirming care for transgender people affects HIV transmission — but without data, that’s not possible.

Researchers and advocates have long advocated for the inclusion of SOGIE data – or sexual orientation, gender identity and expression data – in electronic health records, public databases, registries and clinical trials to better understand these marginalized populations.

Many researchers focusing on issues related to LGBTQ+ health have begun HIV/AIDS work. In those early days, researchers spent a lot of time simply trying to convince people that trans women weren’t the same as men who have sex with men, Poteat says, which may be partly why there’s so much focus on that population in HIV research today . .

In a separate study, Minalga looked at 41 landmark HIV clinical trials between 1991 and 2023. They found that of a total of more than 170,000 participants, less than 1% were identified as part of the trans communityand 94% of them were trans women.

“Transgender people certainly participate in these studies. They are just not recognized as such, and the study was not designed with transgender people in mind,” Minalga said, noting that the first major HIV prevention study to use the word “transgender” at all was published in 2005. “Even though transgender people participate in clinical research and give our biospecimens, our blood, our tissues, our time – if that data is analyzed, published and presented and then informs clinical practice, it does not come back to us.”

If the lack of data on transgender people is detrimental to HIV research and policy development, the implications are further magnified for health areas that are not as publicly connected to LGBTQ+ populations, Tordoff said. Doctors often do not have extensive data on how certain interventions or treatments work for trans patients. This means they have to extrapolate based on data about cisgender people, but not every doctor is comfortable with that.

Striving for better data collection on gender identity

Change could be coming. In November 2023, the Centers for Medicare and Medicaid Services introduced optional questions about SOGIE data that state Medicaid programs could collect from applicants. The agency recommends collecting information about sex assigned at birth, gender identity and sexual orientation. Although data from CMS would not be nationally representative, self-reported SOGIE data has never been collected on such a large scale, according to Nathaniel Tran, an assistant professor at the University of Illinois at Chicago School of Public Health, who wrote in JAMA about the possible impact of the move.

Few states currently collect this data on Medicaid applications, and no state collects all SOGIE information in the same way. Tran hopes the National Association of Medicaid Directors, a nonpartisan group of state program directors, will be able to streamline data collection.

“This is the lower hanging fruit,” Tran says.

At the same time, legislation restricting gender-affirming care continues to spread across the country, which could undermine efforts to collect more meaningful health data on queer populations.

It makes sense, Tran said, that LGBTQ+ people living in states that restrict access to gender-affirming care wouldn’t trust the state to protect their data. “That is a very pragmatic tension,” they said.

But Tran believes that most doctors and researchers have no bad intentions, but rather have never had the opportunity to learn about LGBTQ+ populations. “You caught me on a very optimistic day,” they said.

In the meantime, researchers focusing on LGBTQ+ populations are left to their own devices, balancing the need for even better data on trans people living with HIV and the vast gaps in data on the trans population in every other health area.

Poteat, whose research often focuses on HIV and transgender people, says transgender people participating in research are also frustrated by the way they are taken into account. People are tired of being asked personal questions about their sex lives and then not seeing themselves or their needs reflected in the results.

“Part of my passion for HIV comes from everything it represents and highlights the structural challenges in our society,” Poteat said. “It reminds us of the consequences of homophobia, transphobia and racism.”