In the first US cohort study to study both new cases of HIV and mortality exclusively in transgender women, researchers found that each year 0.33% of women died and 0.55% contracted HIV. Rates of death were higher in Latinx women and HIV incidence was higher in Black women. Women living in southern states, who used stimulant drugs or were in sexual relationships with cisgender male partners were at higher risk of both HIV and death. None of the participants died of HIV-related illnesses but the findings do suggest that more needs to be done to address societal factors leading to the high rates of death amongst these women.
It has previously been estimated that about 14% of trans women are living with HIV in the US and they are a priority population in the US National HIV/AIDS Strategy. Despite this, there remains a lack of information about trans women specifically, having often been grouped with other populations in studies. This two-year multisite cohort study published in the Lancet HIV by Dr Andrea Wirtz and colleagues looked at the number of new cases of HIV in trans women annually, rather than the overall number of cases. This is only the second cohort study to look at new cases of HIV in trans women living in the US. Given the high rates of non-HIV related premature death for participants, they felt compelled to report on this in their study.
Overall, 1312 HIV negative trans women were recruited into the study across the southern and eastern US. Participation could be ‘digital’ which was entirely remote using an app and 578 women opted for. Alternatively, enrolment was ‘site-based’ at research or clinical institutions in six different cities, which included 734 women who had in-person assessments at 6, 12 and 24 months. When questionnaires submitted by participants in either mode indicated mental health problems, drug use or high risk of HIV, they were directed towards support services. Participants were enrolled for a total of 24 months overall.
In total 15 participants seroconverted to HIV during the study, amounting to 0.55% annually. Of those 15 women, seven had never taken PrEP, seven had previously been on PrEP but were no longer using it and one didn’t answer the question. This suggests that strategies are needed that promote PrEP initiation and encourage adherence and retention.
Nine women died, amounting to 0.33% annually. Their deaths were attributed to murder, suicide, overdose, cardiac arrest, another health condition, and unknown causes. None were related to HIV. Underlying themes that contribute to this include stigma, discrimination, imprisonment and poor access to healthcare, which also decrease ability to access HIV prevention strategies.
The rates of HIV were higher amongst those who were site-based rather than digital (0.87% compared to 0.16% annually). Those enrolled digitally were also less likely to die during the study. Rather than suggesting that digital participation is somehow protective against HIV, it is more likely that those able to access digital services tend to have better education and resources available to them. Decreased access to technology such as a phone line or stable home internet connection were found to be risk factors for HIV.
Those who sought gender transitioning services were also less likely to contract HIV or to die during the study. This may be due to more vulnerable women being less likely or able to access transitioning services. It may also be that these services provided support which decreased these women’s risks of death and HIV. Whatever the reason, it highlights the importance of gender transitioning services being available.
Factors that increased the likelihood of both HIV and death included living in southern states, stimulant drug use and being in a relationship with a cisgender man (a man who is not transgender). Latinx trans women and those had had been arrested within the last 12 months were more likely to die during follow-up and Black women were more likely to get HIV.
The high rates of death in this study, while not related to HIV, are important when planning strategies for HIV prevention and policies to help vulnerable populations. As the researchers point out: “A singular focus on HIV prevention is a missed opportunity to address other threats to the lives of people prioritised in HIV services and programming”.
Wirtz A L et al. HIV incidence and mortality in transgender women in the eastern and southern USA: a multisite cohort study. Lancet HIV, online ahead of print, 28 February 2023.