Since its approval by the Food and Drug Administration in 2012, pre-exposure prophylaxis, more commonly known as PrEP, has been proven to be an effective method of HIV/AIDS prevention. And when taken consistently, the Centers for Disease Control and Prevention have found that oral daily use of the drug for HIV-negative people gives it an effectiveness rate of 99%. But despite how effective PrEP can be at preventing HIV/AIDS, researchers at UCLA's Williams Institue — the leading research center on sexual orientation and gender identity law — found in a study that only 3% of the U.S. transgender population use PrEP and that transgender women, the most at-risk population for contracting HIV/AIDS, are least likely to use the medicine.
One of the co-authors of HIV Testing and PrEP Use in a National Probability Sample of Sexually Active Transgender People in the United States is Dr. Ilan H. Meyer. A distinguished senior scholar of public policy at the Williams Institute, he called it an "alarming" finding.
"It's not something I have an explanation for, but, to me, it's an alarming finding," Meyer said. "I think this tells us that there's definitely a need that's being addressed to the larger transgender population in the United States. And we don't have, unfortunately, enough people in this sample to verify, for example, does it have to do with where you live or with other types of resources that you might have to connect with information [about PrEP]. But I think familiarity is usually something that connects with resources and availability — but I don't want to leave out the responsibility of general non-LGBT public health efforts."
A Large Sample
However, despite a relatively small amount of transgender respondents in comparison with the study's sample size, this study is arguably more definitive than similar ones before it because it is the first time a national probability sample in the U.S. has been used to characterize HIV testing and attitudes about PrEP among transgender populations.
"In total, 432,251 individuals were screened, of which 929 identified as transgender (0.21%) in Phase 1. Of those, 668 (72%) agreed to participate and proceeded to Phase 2 and 46.9% of them completed the survey," read the study. "Total completion rate (defined as completed surveys divided by all screened eligible) was 33%. The final dataset includes 274 respondents representing the U.S. population of transgender individuals as defined by our measures."
These are some of the study's key findings:
- Only 3% of transgender people who are at high risk of HIV infection currently take PrEP; slightly more trans women (3.2%) than trans men (2.3%) take PrEP, but the difference was not statistically significant.
- People who regularly tested for HIV and people who experienced affirmation of their gender identity were more likely to use PrEP.
- Significantly more sexually active trans men (58%) than trans women (35%) were familiar with PrEP.
- Among trans people familiar with PrEP, 72% regarded it favorably.
- Those who were not tested for HIV at least once a year were less likely to have favorable attitudes toward PrEP.
- Nearly half (46%) of transgender people who are at high risk of HIV transmission were tested for HIV at least annually, but 23% had never been tested for HIV.
- Transgender people of color were eight times more likely than white transgender people to be tested at least once per year.
- People who searched online for LGBT health information were more likely to meet CDC recommendations for annual HIV testing.
Respondents were asked first about their sex assigned at birth and later what their current gender identity is. The option of "transgender" was also made available to respondents who took the survey.
"To be honest, the only group that is not completely captured here is people who are not transgender-identified, meaning they didn't say they're transgender but they consider themselves nonbinary," Meyer said.
The study also helped to provide PrEP-related statistics about transgender men who Meyer says have had much less research done on them because they're not considered as much of an at-risk group for contracting HIV.
"If you do a search of 'transgender and HIV,' most of what you'll find is about trans women," Meyer said. "Everybody is at risk for HIV, but there's just different levels of risk. And researchers have focused on trans women in the context of HIV. We wanted to include both, but we also made a distinction [that] some of our findings are specific to trans women, because they're at an increased risk that is described in the literature."
In addition, the national data were weighted the first time "to account for non-response from the general population sample of all respondents based on census data" and a second time using Gallup Poll data, which included non-respondents to the survey. (More information about those methods can be found here.)
Barriers to Treatment
Though there is likely no singular answer to why transgender women are least likely to know about and regularly use PrEP, the study's introduction did point to several reasons why this might be.
"Unique barriers and facilitators to HIV testing and PrEP uptake and adherence have been reported among transgender people. HIV testing rates among transgender people are inadequate given their risk for HIV, suggesting that culturally tailored programs are needed," the study read. "PrEP knowledge has been demonstrated to be lower among transgender people than among cisgender MSM [men who have sex with men]. Attitudes toward PrEP are often mixed in studies of transgender people, with fear of negative interactions with hormones and HIV stigma inhibiting uptake."
And beyond those barriers, there might also be the obstacle of misinformation that exists about PrEP's alleged interference with feminizing hormone therapy. A co-author of the study, Dr. Jae Sevelius is an associate professor of medicine at the University of California, San Francisco who confirmed that this misconception exists.
"We have data that shows that PrEP does not reduce the efficacy of hormone therapy," Sevelius said. "This information is important to get out into trans women's communities because many trans women have indeed reported that they are concerned about this potential interaction."
Dr. Tonia Poteat is another of the study's co-authors and an assistant professor of social medicine at the University of North Carolina at Chapel Hill. She confirmed that there is "data from at least three studies that indicate this is not the case."
Though not a one-size-fits-all solution, Meyer suggested that targeted advertising could be a good start. In fact, the CDC found that, though they are not perfect, informational campaigns about HIV/AIDS prevention directed LGBTQ populations have been effective in helping to curb its spread.
"And there are advertisements. … If you look on TV you'll see that Gilead [Sciences. The company that makes PrEP] is doing an advertisement that is inclusive, but maybe not specific [enough]," he said. "I don't what to guess what an advertisement should look like, but in that advertisement, they do focus on communities of color and they show kind of a diverse group of people — cisgender and, I think, one trans woman. So maybe there needs to be more specific ads telling transgender women, 'This is for you.' Rather than being inclusive, I think we need to be more targeted."
Find out more information about the study here.