Researchers Develop an HIV-Prevention Guide Without the Stigma of Asking About Risk

A pilot study found that a two-page decision aid increased awareness of a little-known injectable and allowed patients to weigh their options without feeling judged

The most useful thing about a new HIV-prevention guide may be a question it never asks: Why do you want to know about pre-exposure prophylaxis, or PrEP?

In a pilot study at three clinics, a two-page decision aid helped people choose between a daily pill, long used to prevent HIV, and a newer injectable treatment given every two months, without requiring them to disclose details of their sex lives or explain why they wanted protection.

The study in PLOS Global Public Health details patient reactions to a decision-making tool. The lead author, Wendy Davis, and senior author, Deanna Kerrigan, developed the tool with collaborators at University of North Carolina-Chapel Hill and community partners in Washington D.C. when they were at the George Washington University, and have since joined the Rutgers School of Public Health. Davis now serves as program director for research development and training, Kerrigan as vice dean and Henry Rutgers Chair of Whole Person Health.

What set the tool apart, participants said, was that it carried no risk assessment. Because it never asked them to account for their behavior, they didn't feel they had to justify their interest in PrEP.

The guide sets the two forms side by side: One panel covers how each is used, how well it works and its side effects, while the other turns to preferences, such as taking a pill every day versus traveling to a clinic for a shot.

The tool targets an awareness gap. When the team first interviewed people who could benefit from PrEP, 80% had never heard of the injectable, which the Food and Drug Administration approved in December 2021. Nationally, fewer than 1 in 200 PrEP prescriptions were written for it. And in 2022, only 36% of the estimated 1.2 million Americans who could benefit from PrEP were taking any form of it, the researchers said.

What set the tool apart, participants said, was that it carried no risk assessment. Because it never asked them to account for their behavior, they didn't feel they had to justify their interest in PrEP. People described the guide as a "third party in the room" and an "icebreaker" that "leveled the playing field."

The relief was especially clear among those who aren't always considered as candidates for PrEP, such as older adults.

"We have a lot of options in HIV and other areas that we know work to protect and treat," Davis said. "A big challenge in public health now is how we make people aware of these options so they can use them to their benefit."

The lesson was almost plain, she said: "If you ask people what they want to know and how they want to receive it, and then you do that, they like it. It helps them decide."

The team wrote both English and Spanish versions of the guide in the plainest possible terms.

The disparities the tool aims at are wide. Women made up 8% of PrEP users in 2023, but 19% of new U.S. HIV diagnoses. Black Americans accounted for 39% of new diagnoses but 14% of users.

The authors caution that the pilot used mock clinical visits rather than real appointments, that answers may reflect a wish to please and that one participating clinic may be unusually experienced with PrEP. They say a larger, real-world trial is warranted. The tool is freely available with the open-access study, and the authors said clinics are welcome to use it.

The study was funded through a contract with British pharmaceutical business ViiV Healthcare, which makes the injectable.

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