Community-led trans-affirming care shown to improve PrEP uptake in trans communities

Two recent Californian studies show that PrEP from trans-affirming clinics combined with community outreach significantly improved PrEP uptake in trans communities. A multitude of strategies were employed including peer health education, community events and flexible out-of-hours clinics. Both studies encouraged participation and leadership from trans communities to improve knowledge about PrEP. One of the studies compared PrEP uptake at trans-affirming clinics that also provided hormones with a trans-affirming clinic that only provided PrEP and found that trans people at higher risk of HIV were more likely to access the PrEP-only clinic. The two studies were published in the Journal of Acquired Immune Deficiency Syndromes and provide promise for improving the low numbers of trans people receiving PrEP.

In the US, 9.2% of trans people are living with HIV, compared to less than 0.5% of the general population. The likelihood of an HIV diagnosis is increased further still for Black and Latinx trans people. Nonetheless, previous studies have shown that there is a low uptake and awareness of PrEP amongst trans people. Many barriers have been identified, including stigma, healthcare discrimination, a lack of trans-specific information and concerns about drug interactions with gender-affirming hormones. PrEP programmes and research studies have historically failed to differentiate the specific needs and priorities of trans communities from those of men who have sex with men, thus missing key opportunities to encourage trans people to access care.

In the TRIUMPH study, Dr Jae Sevelius and their colleagues sought to improve the lack of use and awareness of PrEP by offering trans-affirming holistic care alongside PrEP. They used two sites to provide PrEP. The first was a primary care clinic in Oakland that had previously provided sexual health services including PrEP to a predominantly Latinx community, but did not have dedicated trans-affirming services before the study. All staff did transgender competency training prior to the study. The second was a trans-led Gender Health Centre in Sacramento that had provided gender-affirming hormones and mental health support, but no sexual health services, before the study. These staff underwent PrEP training.

Holistic support was provided by peer health educators who helped participants access PrEP and hormones via TRIUMPH services as well as things like transportation and legal name changes. They facilitated group discussions between participants to discuss ways to improve PrEP adherence and organised events focusing on trans-specific sexual health issues. The primary care clinic combined this with culturally specific things for the Latinx community such as food, music and immigration advice. TRIUMPH also used community mobilisation, community events and social marketing to promote PrEP and increase its acceptability in trans communities.

The Stay Study PrEP demonstration project was set up because it had been noticed that PrEP uptake was relatively low in trans-affirming primary care clinics in the San Francisco Bay Area. Dr Erin Wilson and her colleagues used social marketing with trans community leaders to improve the uptake of PrEP in four trans-affirming primary care clinics that were already providing PrEP and hormones. Participants were offered free PrEP, peer support and pill reminders during standard business hours. After two years they had enrolled most of their interested patients.

Subsequently, the researchers set up a trans-affirming clinic which only provided PrEP without gender-affirming hormones and was run by nurses and peer navigators. It offered flexible appointments outside of typical working hours. While accessing PrEP in the primary care clinics could take up to six weeks and multiple study visits, the PrEP-only clinic provided PrEP on the same day.

TRIUMPH enrolled 185 participants across two different clinical sites between October 2017 and March 2020. Between the two sites, 68% enrolled identified as transgender women, 15% as transgender men, 11% as non-binary and 6% declined to answer.

The Stay Study enrolled 153 participants between August 2017 and early 2019. Gender identities represented were 32% women, 46% trans women, 6% non-binary non-conforming or genderqueer and 16% trans men.

Both studies had participants complete surveys about health, lifestyle and PrEP at baseline and three-monthly intervals for a year. In TRIUMPH, PrEP adherence was monitored by dried blood spot testing but in the Stay Study it was self-reported by participants.

Initially in the TRIUMPH study 4% participants were already taking PrEP, 87% started PrEP during the programme and 8% never started PrEP. Those who did not initiate PrEP were less likely to have been aware of PrEP prior to TRIUMPH. Overall 11% thought their risk of HIV acquisition was ‘likely’ and completed more visits than those who considered themselves lower risk. Those reporting higher levels of substance use and higher numbers of sexual partners were more likely to continue attending study visits.

Overall, 58% of transgender women were found to have protective drug levels compared to 48% of transgender men and 34% of nonbinary people and other gender identities. Protective drug levels were higher for those with multiple sexual partners. Those who had been recent victims of violence were less likely to have protective drug levels, which is problematic given the disproportionate levels of violence faced by trans communities.

In the Stay Study, the PrEP only clinic had consistently higher levels of enrolment than the primary care clinics.  Levels of medical mistrust were significantly higher in those accessing the PrEP-only clinic, perhaps because they did not feel comfortable discussing PrEP and their sexual health with their primary care providers, so sought PrEP from an alternative setting. Those engaged in sex work, those with at least three sexual partners and those with a higher perceived HIV risk were more likely to be seen in the PrEP only clinic. The greatest barriers to PrEP identified by participants were concerns about side effects (22%) and ‘other’ factors like PrEP provision or costs (27%).

Find out more: Sex, PrEP and HIV in trans and non-binary people

It is worth noting that only 43% TRIUMPH participants completed the 12-month study duration, which may be due to a combination of factors, including high rates of unstable housing and substance use or changing sexual health needs. In the Stay Study only 64% completed their six-month visit which the researchers used as their endpoint because so many people were lost to follow up, which could also have been impacted by the COVID pandemic, as well as the factors above.

The Stay Study team concluded that a PrEP-only model targeted to the trans communities with flexibility outside normal business hours improved PrEP access, particularly for high-risk trans participants. In summary, “Our study provides evidence that PrEP uptake for trans communities could be enhanced by offering low threshold PrEP-only services outside primary care”.

The TRIUMPH study showed high PrEP uptake at both clinical sites, probably due to the community engagement and education of the local trans communities around PrEP in conjunction with trans-affirming treatment and hormone provision. The researchers also highlighted the need for trauma-based services to focus on HIV prevention and support for those who have experienced violence. They stated that “to effectively deliver HIV prevention services to trans communities, support beyond clinical services is critical”.