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By Jeanne Baron, Senior Producer & Editor at AVAC

At the start of 2021, more than a million people had at least started PrEP at some point since 2016—those numbers fall grievously short of the global target to reach at least three million people in that time-frame. But among those who’ve had the chance to try it, efforts to track and evaluate their use may be missing the big picture. Too often, people who start and stop PrEP are considered non-adherent and unprotected from HIV. But a conversation with one PrEP champion explains a large and important phenomenon of intermittent use, which research suggests can, in certain circumstances, still protect an individual and contribute to prevention at the community level. Josephine Aseme is a leader for sex workers rights, an advocate for poor women, an AVAC Fellow, a sex worker herself, and the founder of a 12,000 member organization for women at risk, the Nigeria-based Greater Women Initiative for Health and Rights.

Josephine has stopped taking her daily pill several times in the last five years. Sometimes stockouts frustrated her efforts to adhere to PrEP, other times she found herself in regions where PrEP was not being offered at all, but sometimes she’s gone off PrEP by choice when her risk of HIV was low. One time she was visiting family with no intention of doing sex work, and when the pandemic descended on her community, she had no clients. “There’s many reasons I hear from the women I work with about why they go off PrEP. People really need support in different ways to stay on PrEP when they are at risk. But PrEP is not for life. It’s HIV prevention for times in your life when you need it. Every time I counsel someone who is initiating PrEP they ask me ‘how long do I have to be on it’ and it’s so good to say, ‘it’s not a lifetime pill. When you are still at risk, take the pill. When the risk stops, so does the pill.’”

The SEARCH study has provided telling data on these patterns. SEARCH is studying the effect of rapid access to PrEP, counseling, flexible options for follow-up, and other interventions on HIV incidence. Among the key findings: 83 percent of study participants stopped PrEP at least once, half of them later restarted. Among those who initiated PrEP with this enriched support, incidence went down 74 percent, compared to control groups that didn’t get the extra support. Self-reported adherence among the whole cohort was never better than 42 percent and declined to 27 percent by week 60. But those who self-reported being at risk showed much higher adherence, never lower than 70 percent. In other words, people go on and off PrEP a lot, but a high number of people who see themselves at risk do stay on it, get the benefit of protection as individuals, and contribute to lower incidence at the community level. These data along with data from the US, the UK and Australia, suggest “coverage”—getting enough PrEP to the people who need it—can result in lower incidence across a population of PrEP users, even if many people are cycling on and off. It’s a picture that demands more nuance in how the field defines using PrEP effectively.

Two recent reports from AVAC’s Prevention Market Manager (PMM) project and Jhpiego, Evaluating, Scaling up and Enhancing Strategies for Supporting PrEP Continuation and Effective Use and Defining and Measuring the Effective Use of PrEP offer key recommendations to address these complex issues: the field should develop new definitions and metrics for effective PrEP use that anticipate that people will cycle on and off; a new focus on the impact of all PrEP products as a whole on reducing HIV incidence is needed; and more research must be done to understand the range of reasons people discontinue and return to PrEP.