Women of trans experience are unlikely to think they could benefit from HIV pre-exposure prophylaxis (PrEP), according to an analysis published in the Journal of Acquired Immune Deficiency Syndrome (JAIDS). But guidelines from the Centers for Disease Control and Prevention (CDC) miss a lot of trans women too.

The study is just the latest to look at the barriers to and benefits of PrEP for trans women. Previous demonstration projects have found that access to both gender-affirming care and PrEP improves uptake of the prevention pills. Studies also show that PrEP drugs don’t impact feminizing hormone levels.

Jowanna Malone, PhD, an epidemiologist at Johns Hopkins Bloomberg School of Public Health, and colleagues conducted a cross-sectional analysis of baseline data from 1,293 trans women enrolled in the American Cohort to Study HIV Acquisition among Transgender Women in High-Risk Areas (the LITE Study) between 2018 and 2020. Specifically, they looked at how well the women met the indication for PrEP according to CDC guidelines designed for gay and bisexual men versus how well they met another set of criteria the researchers developed specifically for trans women. The study also gauged the women’s self-perceived need for PrEP and actual PrEP use.

The women, who were recruited and followed online, all lived in the Southern and Eastern United States, including in Atlanta, Baltimore, Miami, New York City and Washington, DC, as well as 50 other Southern and Eastern cities.

The cohort reflected the overall racial makeup of the United States but less so the rates of HIV among trans women. In the study, 54% were white women, 14% were Black, 9% were Latina and a quarter were mixed race. According to the CDC, 49% of new HIV diagnoses in trans women are among Black women, 33% are among Latinas and just 9% are among white women. Most of the women (80%) had health insurance, 45% reported childhood adverse events associated with trauma and 47% had experienced threats of violence in the previous three months.

When Malone and colleagues used the CDC criteria for gay men—HIV negative, cisgender male sex partner, not monogamously partnered, condomless anal sex or a sexually transmitted infection in the last six months—one in three of the women met the criteria for PrEP.

Then they ran the numbers again, using all those criteria and adding trans-specific criteria they had developed with community input: current sex work, post-exposure prophylaxis use, recent sex with a partner living with HIV, sex with a partner of unknown HIV status and sharing syringes. The study doesn’t appear to differentiate between HIV-positive partners who are on treatment with an undetectable viral load versus those who aren’t. That added another 155 participants who could benefit from PrEP, bringing the proportion of women who could benefit to nearly half (47%).

The researchers then looked at the characteristics that led to PrEP indications, focusing specifically on childhood adverse events, drug use, housing instability and recent psychological abuse. This showed that Latinas could most benefit from PrEP—they were 76% more likely to qualify than white women. Black women were 53% more likely than white women to benefit from PrEP, and people of mixed or other races were 39% more likely.

And confirming previous data, when the study authors looked at housing instability, women who’d ever experienced homelessness or unstable housing were 34% more likely to qualify for PrEP. Recent experience of psychological violence was associated with a 19% increase in the likelihood of benefiting from PrEP. Interestingly, when they looked only at the CDC guidance, none of these factors were identified as key factors that increase risk.

When the researchers asked the women with an indication for PrEP if they thought they qualified, only 28% agreed. The rest thought they were at low risk. This was especially true among women younger than 30 and women with ample social support. However, women who used drugs more than moderately were more likely to think they could benefit from PrEP.  

More than four out of five women who could benefit from PrEP had heard of it, but only 38% had ever taken PrEP. This is slightly higher than CDC data show. Two thirds of the women who had ever taken PrEP were on it currently, and two thirds of those reported having taken the pill every day during the last week. Those women made up just 13% of the total study population.

These findings suggest that providers who want to accurately prescribe PrEP should look beyond the established CDC PrEP guidelines, wrote Malone and colleagues. But they added that the results also appear to lay bare the paradox of PrEP needs among trans women.

“Being non-Hispanic/Latinx Black, Hispanic/Latinx, having above-average drug use, ever being homeless or having a recent (within the past three months) occurrence of psychological violence were associated with a higher prevalence of PrEP indication,” they wrote.

“These factors (i.e., racial and ethnic minority status, substance use, homelessness and psychological violence) have also been shown in related literature to be associated with having less access to health care,” they continued. “This lack of access would, thus, hinder transgender women from engaging with a health care professional who would be able to prescribe PrEP or even identify them as candidates for PrEP.”

Click here to read the study abstract.

Click here to read more news about PrEP for women and more news about transgender people living with and impacted by HIV.