As a community, transgender people are at heightened risk for HIV. Why that is varies between the many different genders that exist underneath the transgender umbrella. But, as we know, transgender people face various barriers, to differing degrees based on their gender identity, that cisgender people don’t face. These barriers include stigma and discrimination in health care settings, as well as educational, work, and social settings. They also include socioeconomic factors, like lack of access to proper jobs and, up until recently, a lack of federal job protection. These socioeconomic and other structural factors, not to mention the additional factors of systemic racism that many trans people of color face, all put a series of barriers between trans people and HIV prevention, especially pre-exposure prophylaxis, or PrEP.
To find out how to address some of these systemic barriers, three different studies were conducted throughout California, all of them funded by the California HIV/AIDS Research Program. The three programs presented some of their results at the 23rd International AIDS Conference (AIDS 2020) in early July.
Southern California, Los Angeles, and San Diego
One study enrolled HIV-negative trans people for a 48-week PrEP study that included text reminders to take medication, as well as phone calls for those who had trouble with adherence. Overall, researchers screened 277 trans and nonbinary people and enrolled 256. At the halfway mark, they had lost about 100 people. The cohort was ethnically diverse, including 28% Latinx and 13% Black participants. Of those enrolled, 57% were transgender women, 22% were transgender men, 10% were nonbinary and assigned female at birth, while the remaining 10% were nonbinary assigned male at birth.
Researchers captured a number of socioeconomic status factors about participants. Overall, they found that, due to systemic barriers and discrimination, transgender women were more likely than other groups enrolled to have a high school education or less, to be unemployed, to experience housing insecurity, and to have been incarcerated.
Of the transgender women enrolled, 35% had participated in sex work or exchanged sex for money, food, drugs, or housing, as well as 33% of nonbinary people assigned female at birth. Researchers also found that, across the board, many participants reported using drugs or alcohol before condomless anal or vaginal sex within 90 days of their baseline reporting.
Ultimately, researchers stressed that, while health care providers should consider the gender identity of a patient when giving care, they should not make any assumptions about a person’s risk factors based on gender identity.
“What struck me is how much, across our whole cohort, people have a lot of challenges,” presenter Sheldon Morris, M.D., M.P.H., researcher at the University of California San Diego, said. “We really shouldn’t be judging people any way when they’re asking for PrEP. You have to treat them individually and provide treatment regardless of what all these other considerations are.”
The Stay Study
One study, called the Stay Study, specifically looked at how to help transgender people access PrEP during the COVID-19 era. The study was conducted at several sites in the San Francisco Bay Area, where, as researcher Erin C. Wilson, Dr.P.H., noted, a low number of PrEP-eligible transgender women take PrEP in comparison to gay and bisexual men. As compared to about half of gay and bisexual men in the Bay Area being on PrEP, only about 15% of transgender women are on the pill.
The goals of the Stay Study were to increase PrEP knowledge and access to PrEP as well as to increase PrEP initiation, adherence, and retention among transgender people. To increase knowledge about PrEP, researchers devised a social marketing campaign featuring trans people, online PrEP education tools, and utilized peer navigators who identified as trans. In total, researchers screened 193 people and enrolled 159 people in the study.
Researchers emphasized that they were aware of the many risks transgender people faced even prior to COVID, including housing discrimination, as well as stigma and discrimination in health care settings. They also noted that 15% of trans people enrolled in the study were living with hypertension.
One member of the research team, Christina Sanz Rodriguez, held a webinar with people in the trans community to determine their greatest needs when it came to health care and PrEP access.
One of the biggest issues that trans people talked about was mental health. Sanz Rodriguez emphasized that, while living through the COVID-19 pandemic, we are experiencing a collectively shared traumatic experience that has disrupted our day-to-day routines and lifestyles. Many people who had preexisting mental health problems have seen their mental health issues exacerbated during life under COVID, while those who did not have prior mental health diagnoses indicated they were experiencing increased anxiety, depression, and substance use. Many participants were grieving the loss of their gender-affirming surgery, as many had to be rescheduled due to COVID. Some people reported suicidal ideation, frustration, and anger and a fear of going out in public. Other problems include isolation, fear of acquiring COVID, and the stress of social media and the news cycle.
Many trans participants also spoke about the increased racism and discrimination that many are facing. East Asian people are facing increased violence as the government continues to blame China for COVID. Heightened anti-Blackness as well as the ongoing epidemic of violence against Black trans women are a constant physical and psychological threat. Also, Black and Latinx people are already overly burdened in the U.S. COVID-19 epidemic.
Sanz Rodriguez also spoke about the heightened challenges for trans people who do sex work, including loss of income, more anxiety regarding in-person work, less safety in numbers for street-based sex work, and some tricks trying to get away with paying workers less to take advantage of their financial need.
Ultimately, Sanz Rodriguez said, all barriers to care must be addressed as part of care.
“In order to have health care engagement, the barriers that the individual is facing must be addressed and prioritized,” she said. “For example, if they do not have a source of income, then the priority is a means of survival. If they are being discriminated against or facing violence, then their safety becomes a priority. If they are challenged with the overwhelming barriers pre-COVID and during COVID-19, then the priority is providing access to appropriate resources such as hotlines, virtual peer gathering, or shelter.”
Finally, Sanz Rodriguez emphasized that in order to engage trans people in health care, providers must lower as many barriers as possible and address the many structural barriers that trans people face, including loss of income, heightened discrimination, mental health, and fear of contracting COVID-19. All health services, she emphasized, must address mental health, discrimination, economic impact, loss of income, and spiritual health.
The TRIUMPH Model
The Oakland and Sacramento-based TRIUMPH model aimed to develop a culturally relevant community-led PrEP demonstration project.
“Because trans women in particular have unique barriers to care and high levels of medical mistrust, it was imperative that this initiative was led and informed by the experience of trans women themselves, rather than adapted from MSM [men who have sex with men]–focused expertise and strategies for PrEP delivery,” researcher Luis Gutierrez-Mock, M.A., M.P.H., said.
People were eligible for the TRIUMPH model if they were over 18, HIV negative, identified as trans or nonbinary, were currently or intended to be sexually active, and had a desire to use PrEP. The program included several components. PrEP was monitored alongside hormone therapy, peer navigators were trans, and both sides also had monthly support groups and an ongoing drop-in support program. For drop-in, people often brought snacks and made the space an “organic, hangout feel” space.
Altogether, 194 people were screened, and 185 people were enrolled. Over time, a few more were lost to follow-up.
Overall, TRIUMPH researchers found that any PrEP program catering to transgender people must address the immense need for support among participants, including help navigating insurance, asylum, legal assistance, and housing. No-shows and cancellations were a particular problem, as was making sure clinicians had ample time to spend with clients.
Researchers said they had a lot of successes, including offering compassionate clinical care as well as increased PrEP uptake, a sense of community, and meeting participants’ needs beyond clinical services, including name-change services and asylum procedures.
They also learned about the need for culturally specific interventions, especially to meet the needs of Latinx clients. They needed trans peer navigators to establish trust with the community, along with a need for more gender-affirming providers.
As part of the TRIUMPH study, researchers also conducted a smaller study to measure drug-drug interaction between PrEP and hormone replacement therapy. In both trans men and trans women, there was no interaction between PrEP and hormone replacement therapy and no difference in tenofovir concentrations in the blood between trans men and trans women. Researchers emphasized this was important, as many trans people who inquire about PrEP will ask if PrEP interacts with their hormone replacement therapy.