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HIV/AIDS Resource Center for Women
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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

October 15, 2013

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How to Make PrEP Work for Women in the U.S.?

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. gathered several members of the working group to discuss what's being done to chart a safe path for PrEP use by women in the U.S.; potential barriers to PrEP access, including inadequate education for providers; visions for the future of HIV prevention for women in the U.S.; what information and resources are needed in order to achieve those visions; and why the story of the female condom is a cautionary tale for the introduction of PrEP for women in the U.S.

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

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

Anna Forbes

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?


So we developed that platform, that position statement. We presented it publicly last March at the Conference on Retroviruses and Opportunistic Infections (CROI), the day that the VOICE trial results were released. In it, we called for a meeting with the Office on National AIDS Policy, the CDC, and the Department of Health and Human Services, to discuss the position statement, and to discuss our concerns. We were very pleased to get the meeting before the date that we suggested as the deadline date for it. So we met with them last April, on April 4.

We proposed [some] things that are outlined in the position statement, including the convening of a coordinating committee to look at these issues in some depth, and collaboratively made up of civil society people, government people, researchers, etc., to really come up with some concrete plans for how to do this as well as it can be done.

We are still waiting for a response from the feds as to whether this coordinating committee that we've requested is going to be set up. We received news in July that our request has been heard and that they will be getting back to us soon regarding whether, when and how that's happening. But we're continuing to push forward with that. And we're continuing to push forward with educating constituencies as broadly as we can about some of these issues and what they mean for women.

We have three webinars coming up later this year. And we're doing outreach in collaboration with other networks, including the HIV Prevention Justice Alliance, AVAC (AIDS Vaccine Advocacy Coalition) and the National Women's Health Network, to try to invite people in those organizations, and interested in those organizations, to hear what we are concerned about with regard to PrEP, and where we see the need for action to make it be something that can be as effective for women as possible.

Olivia Ford: Zil, are there additional questions that you, in terms of your involvement with the Working Group, would want to see answered, especially in the long term?

Zil Goldstein

Zil Goldstein

Zil Goldstein: Well, I think that there's a long history of misogyny in biomedical research. I'm really happy to be involved with a group that's working to address that, specifically with PrEP.

I'm relatively comfortable using Truvada in the long term, given all the work that I've been doing in HIV. It will be interesting to see how women are using it differently. I'm not trying to make any bio-centric statements here, but women's lives just tend to be different from men's lives, because of the way that we've constructed our gender roles in the United States. I look forward to seeing how folks use it differently; seeing what follow-up rates are; seeing what women's concerns are, specifically around PrEP; and also figuring out, as Anna and Dazon have said, how to do the education piece with folks who are prescribing and using PrEP. Because it's not a pill that you can take and then be immune to HIV; it is just another tool in the prevention toolkit.

When I've prescribed it, I've seen a lot of disinhibition with my patients, in terms of condom use. So that's a big question in my mind: How are we going to get across to people who are taking PrEP that it's not a magic bullet?

I also question where to use PrEP in my own practice: There are people who need it, who don't want it. There are people who want it, who don't need it. And then there are people who are incredibly motivated and will do everything they can to avoid seroconversion -- including using condoms, or not changing their behaviors with regards to condom use, once they're on it. And then there are people who are just like, "I can take this, so I don't have to worry." So I have questions in my own mind. I've been sort of holding off on using it until we can suss out the answers to all of these questions, in terms of how to encourage more people who are using PrEP to act like they're in the third category, the I'm-going-to-do-everything-I-can-do-to-keep-from-seroconverting category.

Anna Forbes: I think one degree of difference we see between women and men in regard to the disinhibition is that for women it's not just the feeling of, "I'm taking this pill so I don't have to insist on condoms"; there's also, as we've always known, in heterosexual relationships, the pressure on women by the male partner not to require condom use. I worked for many years around advocacy for microbicides, as did Dazon. The whole heart and soul of that effort was to give women an alternative when men were saying, "Look, I'm not going to use a condom. You do whatever you want, but I'm not using a condom."

I'm very concerned about women going on PrEP because they feel as though doing that will mean that they no longer have to have the condom argument with their partner. The Working Group, through an informal survey, has been trying to elicit information specifically from women who are or have been drug users, women who are or have been sex workers, and transgender women, about PrEP. One of the issues that has emerged from it has been sex workers, in particular, saying, "We're concerned that women doing sex work may feel that, since they're using PrEP, they don't have to require condom use," which means they can make more money; or that women working in settings in which they have a boss or a supervisor may be fearful that a massage parlor owner, for example, might say to their employees, "You're not going to use condoms anymore because we'll make a bunch more money if we don't use condoms. You all are going to go on PrEP, and then you'll be safe."

Obviously, we know that if people do that, they are actually enhancing their risk. And the pressure on women around those kinds of situations, I think, frankly, is probably greater than the pressure on men in most cases.

Dazon Dixon Diallo: The other layer that's been a part of our questioning and listing of concerns is: In the post-approval era, what do we actually know, in terms of these questions, in terms of the outcomes from the studies that were looking specifically at women? How are we acknowledging what we know and don't know? And then, how are we building that into the practical application and the rollout?

Where are the guidelines specifically, for example, for sexual reproductive health providers, for family planning sites, where women are most likely to receive the services? How is it being incorporated into women-specific HIV prevention strategies -- not just overall prevention strategies, but gender-based, gender-related, gender-concerned, or gender-centered prevention strategies? How are we identifying those guidelines, and how are we imparting that information into the community? And where's the community's involvement in making sure that you're held accountable to those guidelines?

More than that is, what is the current role of industry, which right now is one pharmaceutical company that's overall responsible for the drug -- and what's the federal responsibility, since they've approved this drug -- of assuring that community providers, educators and consumers are all adequately informed and aware not only of what's available, but what the concerns and the questions are?

So, those are some of the questions we've raised, in addition to saying: What is your plan for funding ongoing research around these issues for women in the U.S.? Since women in the U.S. weren't included in the studies themselves about the drugs as PrEP, how are you going to invest in understanding how this is going to play out for U.S. women? So, in demonstration projects, implementation pilots, including and integrating funding that's gender-specific in these high-impact combination prevention grants that are going to health departments.

"Where is the moment that PrEP becomes something that's empowering to women? ... I do a lot of work with folks around condom negotiation, and it can actually be something where it's like ... 'It's worth it to you to value yourself enough to do this.'" -- Zil Goldstein

Zil Goldstein: I totally agree. I just want to add: Where is the moment that PrEP becomes something that's empowering to women? I hate using that buzzword, but I do a lot of work with folks around condom negotiation, and it can actually be something where it's like, "You are going to learn that you, as a person, have value; it's worth it to you to value yourself enough to do this." Does that make sense?

Dazon Dixon Diallo: Yes. The word that I've been using, Zil -- because I agree with that empowerment question -- is: What about this gives women agency?

Zil Goldstein: Yes!

Anna Forbes: Right.

Dazon Dixon Diallo: How are we creating what's needed for this to be one of those tools? Actually, there was a great question that was raised at some debate I was on, around PrEP versus treatment-as-prevention. One of the main questions, posed by Linda-Gail Bekker, from the Desmond Tutu HIV Center in Cape Town, South Africa, was: If we don't pay attention to PrEP as a tool for women -- or actually look at how using biomedical tools like treatment and prevention and PrEP affect women -- will it be like "the new condom"? In other words, is it again a situation where, regardless of the tool itself being marketed or provided to women, they're still going to have to involve someone else to make that decision and use that tool?

[When] we get to the point where a woman does not have to have that conversation with anyone, does not have to look for that permission or that explicit acceptance from someone else to protect herself, that's when we'll know that it's a successful tool for women.

Olivia Ford: Is there any additional information you'd like to share that you've gathered from women informally, through discussions or focus groups -- or in your own practice, Zil -- around their perceptions of PrEP, and of their own level of risk for HIV?

Sarah Patterson: As we've spoken to community members about their concerns regarding the use of PrEP, they've expressed the need for health care providers to be considerate of their individual experiences and needs surrounding sexual health, in order to ensure they felt comfortable discussing PrEP as an option with them.

Zil Goldstein: One thing we've run into at Persist -- and there's a little bit of research to support this -- is that most of the time the highest risk behaviors among sex workers and, particularly, women sex workers, are in their personal lives, rather than their professional lives. It's sort of like a shortcut to intimacy, and a shortcut to separating one's professional and personal sex life. That's been interesting; a woman may say, "I don't need PrEP. I always use condoms with my clients." But then we start talking and it's like, "Well, do you really know that your boyfriend is not messing around?"

The other thing that we've run into is just cost effectiveness: Condoms are cheap; PrEP is expensive.

Sarah Patterson: As with many aspects of accessing health care as a person in the sex trade, community members wanted to know about the cost of PrEP and how they might be able to afford it. Many people assume, because someone trades sex, they have access to a substantial income, but the financial circumstances of those we serve are extremely varied, and rarely do people have significant funds to invest in their health care.

Zil Goldstein: People would rather use condoms than pay out of pocket for PrEP (because so few of the people that we're working with have health insurance). There's this other side, where women can't have agency around this without being able to afford it. It's part of a bigger question about how we structure health care in the United States.

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