Making PrEP Work for Women
Pre-exposure prophylaxis (PrEP) is a promising new HIV prevention tool—but, like condoms, it only works when used consistently. To the best of our knowledge today, that means taking a daily pill (along with regular HIV testing and other health screenings).
Two clinical trials—VOICE and FEM-PrEP—in African countries raised hard questions about how well PrEP could work for women in some communities. For example, where pill-taking is not the norm, will women want to take a daily pill to prevent HIV? And how do women’s perceptions of their own HIV risk play into their feelings about PrEP, and their willingness and ability to adhere to it?
The U.S. Women and PrEP Working Group is raising similar questions about PrEP for women in the United States. Want to be part of this important conversation? The working group is hosting a free webinar, “Risky Women: Disrupting Simple Notions of Women’s HIV Risk,” on December 9. (Get the scoop on the webinar and speakers here.)
Need some background information before Monday’s webinar? Check out Olivia Ford’s insightful Q&A with working group members and women’s health experts on TheBody.com. SisterLove founder and CEO Dazon Dixon Diallo, longtime women’s HIV prevention and treatment advocate and BETA contributor Anna Forbes, and other experts in women’s health explore questions about how U.S. women can benefit from this new HIV prevention tool, what women need from their providers in order to understand and access PrEP, and what “real world” use of PrEP will look like for women.
“The goal is to have people use something, as opposed to nothing,” Anna Forbes observes. “I think it’s really a mind shift away from risk elimination and here’s-the-great-new-thing-that’s-going-to-eliminate-your-risk, to a mindset of, HIV risk is a reality in life for most people. And here are ways that the risk can be managed. We have to help people manage it as best they can.”
Read the excerpted Q&A below, and find the full article at TheBody.com.
How to Make PrEP Work for Women in the U.S.? A Conversation With Veteran Women’s Health Advocates From the Working Group on U.S. Women and PrEP
By Olivia Ford
October 15, 2013
If women account for at least 25 percent of adults living with HIV in the U.S., then understanding the implications for women of our newest and most talked-about HIV prevention tool—pre-exposure prophylaxis, better known as PrEP— ought to be a priority for community groups and government health agencies alike. While the lack of stated prevention goals specific to women remains a conspicuous blind spot in the U.S. National HIV/AIDS Strategy, a cadre of U.S.-based women’s health advocates has assembled to begin to fill that gap as it relates to women and PrEP, mobilize resources to plan for and educate around the introduction of this tool, and recommend actions federal agencies and other stakeholders can take to support this work.
…Joining this conversation are Dazon Dixon Diallo, founder and president of SisterLove, Inc., an HIV/AIDS and reproductive justice organization that has served women in Atlanta, Ga., for more than two decades; Anna Forbes, a Washington, D.C.-based consultant and longtime expert on women’s HIV care, treatment and prevention; and Zil Goldstein, a family nurse practitioner in New York City and clinical director of Persist Health Project, a peer-led project linking people with experience in the sex trade to affirming health services. Sarah Elspeth Patterson, Executive Director of Persist, also contributes perspectives to this discussion.
Olivia Ford: Talk a little bit about how and why the Working Group on U.S. Women and PrEP was convened. Who all is involved? What questions do you ultimately want to see answered through your work, in the short and the long term?
Dazon Dixon Diallo: There are many people who are on the Working Group; the three key leadership folks of the group — myself, Anna Forbes and Manju Chatani — all have long histories (or herstories) engaging in extending women’s HIV prevention options, starting with the microbicides conversation, and then post-CAPRISA study results, blending that microbicides conversation with an expanded focus on biomedical prevention options, by way of pre-exposure prophylaxis and other things that are in the pipeline.
We stepped up our interest when Gilead Pharmaceuticals submitted their investigational new drug application to get the FDA’s approval to expand the use of Truvada [tenofovir/FTC] and approve it as an HIV prevention strategy for at-high-risk U.S. adults, right? Men and women. But, even more specifically, what did this application for approval mean for women (especially if it was going to be fast-tracked); and not only that, but where were the women’s voices in expressing where we stand on some of these issues? And if we don’t have a stance, what are our questions? What do we need to know, so that we can take a position and advocate on behalf of insuring that women are kept safe — whether that meant approval, or non-approval, of PrEP?
So we looked to see who was holding the conversation. It wasn’t happening, so we started a conversation just around: What are we saying as women who are engaged in these issues, for and on behalf of women living in the U.S.? That started in March of 2012. And over the course of the year and a half since, we did a whole lot of work around identifying just those questions, those issues, and what positions we were taking.
Anna Forbes: Certainly, the core of what we’ve done so far is the development of the position statement. It was, not surprisingly, a long and laborious process because, as you can see from the list of endorsers at the end of the statement, we have people from a wide range of disciplines and with a wide range of interests around this issue. But we felt that it was really important that we start by developing a very solid platform that articulated what we feel as though we know; what we need to know that we don’t know; what research we were calling for; and specifically what actions we were calling for from the federal government, with regard to PrEP. Because, as Dazon said, we felt as though there hadn’t been any consistent voice for women. And, of course, the level of attention to women around PrEP was very much affected by the fact that in both the FEM-PrEP trial and the VOICE PrEP trial, PrEP was shown to have no effectiveness among women. It seems very likely now, although we don’t have the hard evidence yet, that that had to do with the very low level of adherence.
So we were concerned about what happened now that the FDA has approved Truvada for sale as PrEP in the United States. What happens as it begins to be promoted? What happens as women begin to use it? How do we ensure that women have the information that they need? And what is going to be required, in terms of research, in terms of training providers, in terms of public media and social media campaigns to educate people about PrEP, so that they know what they can expect and what they shouldn’t expect it to be able to do as a prevention tool?…