Rates of pre-exposure prophylaxis (PrEP) uptake among eligible youth experiencing homelessness (YEH) are low due to structural, community, and individual barriers exacerbated by the COVID-19 pandemic. PrEP navigators are crucial to facilitating access to treatment for this population, according to a preliminary data analysis presented by Diane Santa Maria, DrPH, MSN, RN, PHNA-BC, at the Association of Nurses in AIDS Care (ANAC) annual meeting held November 17 to 19, 2022, in Tampa, Florida.

Youth experiencing homelessness are 6 to 12 times more likely to become infected with HIV than housed youth, explained Dr Santa Maria, who is Dean of the Jane and Robert Cizik School of Nursing at The University of Texas Health Science Center at Houston. Negative experiences with health care providers and mistrust of the pharmaceutical industry are key barriers to PrEP initiation in YEH.

At the beginning of this study in December 2019, PrEP navigators were instrumental in advocating for patients and reducing barriers to PrEP uptake in this community; however, navigator services quickly became limited as the COVID-19 pandemic began. As a result, only 2 out of 82 patients who chose PrEP as an HIV prevention goal received therapy and were adherent to this treatment.

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Study Design

Using data from a larger randomized controlled trial assessing the efficacy of a nurse case management HIV prevention and care intervention for YEH, Dr Santa Maria and colleagues assessed data from 219 patients eligible for PrEP between December 2019 and September 2022 out of a total of 265 YEH in the intervention arm of the study. A total of 82 of these 219 eligible patients chose PrEP as their prevention goal in a shared-decision making model of care and were referred to a PrEP navigator.

Only 64 of the 82 YEH connected with their PrEP navigator to schedule an appointment and 30 patients made the initial visit with their navigator.

Of the 30 patients who completed at least 1 visit with a PrEP navigator, 17 patients remained in contact with their navigator and were prescribed emtricitabine/tenofovir, and 10 of these participants took an adherence test. Eight of the 10 patients who took the test reported missing doses or discontinuing their treatment, and 2 patients were found to be adherent at the time of the test.

As the study period began shortly before the onset of the COVID-19 pandemic, researchers noted that the pandemic presented challenges for patients and PrEP navigators to attend in-person clinic visits.

The Role of PrEP Navigators in Patients Experiencing Homelessness

PrEP navigators have a “tremendous amount of experience in understanding health care navigation and also working with young people who are hesitant or have high levels of mistrust,” Dr Santa Maria explained. Without a PrEP navigator attending their clinic visit, YEH could experience issues with provider-based biases impacting their care.

“For instance, if a young person comes in and says that they’re interested in getting PrEP to our nurse, but then when they get to the clinic, they would say ‘I have not had sex in 6 months,’ which would make them ineligible for PrEP. [The navigator] would have to go back to the provider and say, listen, regardless of what happened yesterday, this person is preparing for tomorrow,” Dr Santa Maria said.

Providers may also not prescribe PrEP because they question where the patient will keep their pills and whether the patient is too unstable to be adherent to treatment. “We have young people who go to providers for PrEP and are turned down. That is where the navigator becomes really important to advocate for them in the moment,” Dr Santa Maria explained.

Patient-Reported Barriers to PrEP

Researchers conducted interviews with 20 of the 82 patients who selected PrEP as their goal during the intervention period. The average age of participants who were interviewed was 22, and 9 identified as female, 11 identified as male, and 9 identified as a sexual gender minority. Eleven of the patients were Black, 3 were Hispanic, and 3 identified as multicultural (3 did not reply).

Researchers structured participant interview responses about barriers and facilitators to PrEP into 3 categories: structural, interpersonal and community, and individual. Patients reported no cost and positive past health care experiences as facilitators to PrEP access at the structural level. Conversely, lack of transportation and past negative health care experiences were the most commonly reported barriers to PrEP.

“I think that the mistrust piece is huge, not truly trusting pharmaceutical companies in general,” Dr Santa Maria said. “So that’s a big barrier for our young people, especially if they have come out of the foster care juvenile justice system where they were often required to take medication for a certain amount of time. When they’re in those systems and they hit 18, the last thing they’re going to do is take medication.”

At the interpersonal and community level, a positive experience with a health care professional (HCP) was the top facilitator to PrEP and a negative experience with an HCP was the top barrier to PrEP. Participants reported that believing that they were at risk for HIV and that PrEP prevents HIV were facilitating factors; additionally, motivation to prevent HIV and trust in advice from the nurses and PrEP navigators were facilitating factors.

Reported barriers to PrEP at the individual level include low perceived risk of HIV infection, lack of knowledge about PrEP, and concerns about taking a daily pill and its side effects.

Dr Santa Maria reported an uptick in PrEP prescriptions since September 2022 with the increased use of PrEP navigators in this program. The study is ongoing.

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Santa Maria D, Carillo A, Harrison T, Jones JT, Ocampo E. Challenges of PrEP uptake and adherence among youth experiencing homelessness. Poster presented at: ANAC2022; November 17-19, 2022; Tampa, FL.