On-demand PrEP use among GBQM: Insights from the PRIMP study
Many gay, bisexual, queer and other men who have sex with men (GBQM) can benefit from pre-exposure prophylaxis (PrEP) to prevent HIV transmission. The use of PrEP involves HIV-negative people taking antiretroviral drugs to lower their chance of getting HIV. PrEP is highly effective and can be taken daily or on demand through the 2-1-1 method, which offers an alternative dosing strategy. This method involves taking two pills two to 24 hours before sex, one pill 24 hours after the first dose, and another pill 24 hours after the second dose. In 2019, the World Health Organization endorsed PrEP on-demand for GBQM who have sex less frequently. However, Health Canada has only approved daily use and on-demand remains off-label.
PrEP uptake has been slow for GBQM who meet clinical guidelines, including those who reported condomless anal sex within the last six months, acquired a sexually transmitted infection in the previous year, used post-exposure prophylaxis more than once and had an elevated HIV risk based on an HIV risk assessment tool. The slow PrEP uptake has been attributed to cost, concerns about side effects, perceptions of not being at high enough HIV risk, having no regular contact with primary healthcare providers, and stigma. On-demand PrEP is one possible solution to increase uptake, which can decrease costs and may be more acceptable for GBQM who know in advance when they will have sex or are worried about side effects. However, there is an unfortunate lack of awareness about this dosing regimen among both GBQM and their healthcare providers.
About the PRIMP study
Few studies in Canada look at the acceptability, adaption and reasons for using on-demand PrEP. To address this knowledge gap, researchers from the PrEP Implementation Study (PRIMP) conducted interviews with GBQM PrEP users in British Columbia and Ontario to explore changes in PrEP use over time. These interviews were conducted over three years to explore patterns of PrEP use, including reasons for using on-demand PrEP.
The study aimed to improve PrEP delivery for GBQM by using program data to assess the PrEP cascade in B.C. and Ontario, two provinces with different PrEP access policies. PRIMP involved two data collection methods. First, two cross-sectional community surveys were conducted over five years. Second, in-depth interviews were conducted once a year between 2020 and 2022 with current and former PrEP users. A total of 38 participants from the qualitative component of the study (20 in B.C. and 18 in Ontario) were recruited and asked about their PrEP use, including any pauses, resumptions and discontinuations.
The interviews demonstrated that although participants were interested in taking PrEP on-demand, many remained confused about how to correctly use this method despite its potential to meet their needs. Below are some examples from the interviews that shed light on participants’ experiences with on-demand PrEP and how many did not receive sufficient information from their healthcare providers.
Personal experiences of on-demand PrEP
Some participants described using the 2-1-1 dosing regimen due to side effects believed to be caused by daily PrEP use. For example, in 2021, a participant from B.C. said:
I had an issue with a blood test […] with my white blood cells. I asked my doctor, is this because of PrEP? And she was like, well, I’m not sure […]. And she said, you know, if you’re not in consistent need of it, it might be a good idea to do it on-demand.
Although the provider suggested on-demand PrEP as an option, the participant did not receive adequate guidance on how to implement this method. As such, the participant learned about on-demand PrEP through an online search. During his final interview in 2022, he confirmed he was still taking it on-demand.
Another participant started using his remaining PrEP pills on an on-demand basis after moving to another province, where he did not yet have access to PrEP. He reported learning about on-demand from his friend:
When I moved here, I brought my PrEP medication […] because I wasn’t taking it consistently […]. My friend told me he does it on-demand, so I started to try that […]. I don’t even know how you’re supposed to do it. I just learned from my friend.
Some men expressed interest in on-demand PrEP, but they lacked knowledge about it or were discouraged by healthcare providers. For example, a participant from Ontario shared:
I know about on-demand, but I don’t know much about it or how to get around it. I remember asking my doctor about me not taking PrEP every day […] he was like, it would be better if you just take it every day.
One participant experienced side effects, which he believed were caused by daily PrEP use. He explored on-demand PrEP as an alternative; however, he did not receive accurate information from his provider, revealing a potential knowledge gap:
I was gonna do on-demand, but you have to take PrEP every single day […], or at least that’s what [the doctor] was telling me. So, he [the doctor] wouldn’t let me take it on-demand [because] I had to take it every single day for three to four months.
This participant stopped PrEP because he continued to experience gastrointestinal side effects. However, he indicated a willingness to take oral PrEP again if side effects improved and his sexual activities changed significantly.
The importance of knowing about on-demand PrEP
The examples above demonstrate a lack of knowledge about on-demand PrEP among participants and healthcare providers. Some participants who switched to on-demand PrEP did so because their doctor suggested it. However, these participants and others spoke of having trouble finding information about on-demand PrEP and having to search online or ask friends. Some men wanted to try on-demand PrEP, but their provider advised them to take it daily or did not provide them with accurate information about on-demand PrEP. This study demonstrates that awareness and understanding of on-demand PrEP should be increased for healthcare providers.
Cost is another barrier influencing PrEP use. Since on-demand PrEP uses fewer pills, it could be an alternative to daily dosing that could reduce cost and improve PrEP uptake.
Given the recent approval of injectable PrEP in Canada, there are now several PrEP options that can and should be offered to GBQM, including daily and on-demand oral PrEP. Providing individuals with various choices could empower them to choose the best method that suits their needs and circumstances, resulting in increased PrEP uptake by GBQM and better health outcomes within the community.
Emerich Daroya is a lecturer in gender, sexuality and diversity studies at La Trobe University in Melbourne, Australia. Previously, he was a postdoctoral research fellow at the Dalla Lana School of Public Health, University of Toronto, contributing to the PRIMP Study. Grounded in sociology, his research employs a critical public health lens to examine the health and well-being of gay, bisexual, queer and other men who have sex with men, exploring how these issues intersect with social determinants of health.
Daniel Grace, PhD, is an associate professor at the Dalla Lana School of Public Health, University of Toronto and Tier 2 Canada research chair in sexual and gender minority health. He is an internationally recognized medical sociologist who leads a mixed methods program of community-engaged research to advance the social, mental, physical and sexual health of 2S/LGBTQ+ communities. His research into the everyday understandings of biomedical HIV prevention has informed community programs, health policy and legislation at provincial, national and international levels. Daniel Grace is director of the Centre for Sexual and Gender Minority Health Research, Dalla Lana School of Public Health.
Darrell H. S. Tan is an infectious diseases physician and clinician-scientist at St. Michael’s Hospital, where he leads the Options Collaboratory in HIV/STI Treatment and Prevention Science. He is also an associate professor in the department of Medicine and Institute of Health Policy, Management and Evaluation at the University of Toronto. His research focuses on clinical trials and implementation science in the areas of HIV prevention and treatment, sexually transmitted infections and COVID-19. Dr. Tan holds a Tier 2 Canada research chair in HIV prevention and STIs, is co-lead of the HIV prevention core of the CIHR Canadian HIV Trials Network; and is a member of the governing council of the International AIDS Society.