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HIV/AIDS Resource Center for Women
Michelle Lopez Alora Gale Precious Jackson Nina Martinez Gracia Violeta Ross Quiroga Loreen Willenberg  
Michelle Alora Precious Nina Gracia Loreen  

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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Anna Forbes: Plus, the cost issue also becomes important, particularly with sex workers. As Cheryl Overs, who has done a lot of work around new prevention technologies and sex workers, points out: Condoms are multipurpose. If you use a condom, you can prevent pregnancy; you can prevent HIV; you can prevent other sexually transmitted infections (STIs), etc. Obviously, PrEP isn't going to do that. And if you're looking at it from the point of view of what someone can afford, if she chooses to spend the money that she has on PrEP instead of condoms -- if it's not a situation in which she can afford both -- then people's risk may actually be heightened by using PrEP instead.

I can only speak to that from a domestic standpoint, from the folks I've been talking to in connection with this survey. And we've got nearly a hundred responses to it, at this point; most of them collected in little in-person groups, where we talked about PrEP and then people completed the survey. But the number one concern people always bring up is cost. At the moment, Gilead has a patient assistance program, and technically you can get the drug if it's been prescribed, even if your insurance doesn't cover it. But you may not be able to get the adjunct costs covered -- you know, getting to the clinic, getting whatever testing in addition to HIV testing you need along with the PrEP prescription, etc. So there are still potential costs associated with it.

The other thing that keeps coming up over and over again are the side effects and resistance. This is a concern usually being articulated by people who are already living with HIV and are very well aware of the fact that using a drug improperly can cause resistance. There is real concern around the possibility that if PrEP starts to be widely used, particularly in populations where people are not well prepared for it and are not well educated about it, where the monitoring of adherence and so forth is not being done carefully, then we could find ourselves in a situation where there's much wider circulation of HIV that's resistant to Truvada. And clearly that becomes a problem for people individually, if they seroconvert and have to seek treatment; and it becomes a problem on a population level, if drug-resistant virus is more widely circulated.

I don't think we have enough data yet to know how likely that is to occur. It may be unlikely. I hope it is. But it is a concern that is brought up regularly.


Zil Goldstein: Speaking directly to that concern: None of the Truvada-specific mutations really favor viral replication. They all make the virus slower and less effective. So that's sort of interesting; if that happened, if there was all of this widespread resistance, then would it actually cut down on HIV transmission? That would be an interesting question, but not something that one can really do research around.

But then the other thing, Anna, that you made me think of: All of this presumes that you can even find a health care provider that you're comfortable talking to about PrEP. In all of the focus groups that we've done at Persist, very few people had ever even had a positive experience with a health care provider. Everyone was skeptical about going into a health care provider.

I think this is part of the reason why PrEP hasn't really taken off in the way that some folks were expecting it to. It's because the people who are at highest risk are probably also some of the people who are least comfortable going in and talking to a health care provider honestly about their sex life.

So, in addition to all of the provider concerns around how to use this effectively, there are concerns around how to talk to a patient who is coming in and asking for PrEP without making them pull out all of their hair and run screaming from the exam room.

Dazon Dixon Diallo: We at SisterLove are the local conveners for the Black Treatment Advocates Network (BTAN) here in Atlanta, and that's been a key focus of a lot of the work we've been doing with BTAN for the last year; there's still just a boatload of questions around cost, around access.

As a matter of fact, I have an intern right now who is simply trying to work up a provider resource list of who we can refer people to for PrEP, and who we might partner with, to make sure that they're gender-sensitive, that they're seeing all women that we refer, that we would identify if they express an interest in learning more, or have any access to the prescriptions. There's almost no one informed enough to even provide the service, and we're in a town of a whole lot of HIV research clinicians.

But there are concerns at the local provider level of what needs to be incorporated into their current testing program, into their current HIV primary care delivery. Are there different messages for positive women versus women who are not HIV positive? How are we identifying them?

All of those are still coming up as concerns directly from the community. At a very personal level, a lot of them mirror a lot of the data that came out of the six-city qualitative focus group work that was done by Maura Riordan and Judith Auerbach through AIDS United. We're updating some of those with some additional focus groups with AIDS United, including more groups across the Southern region, just to see what women in particular are saying, and what they already know. These are similar to the kinds of conversations we'd have about anything around behavior, social constructs that support behavior modifications, access to health care, and health literacy. The reality is, we're not acculturated to taking pills unless we have an illness that identifiably is connected to why we take the medicine in the first place. And that's not just in HIV; that's almost across the board. People raise these concerns.

What it has led to for us at SisterLove is a couple of things. One is, we've gone through all of the training certification. We're about to start doing couples testing and counseling, so that there is standard opportunity to find more serodiscordant couples. I think the most immediate use of PrEP for women in this country right now, if not the only reason to use PrEP right now, is serodiscordance or planning for pregnancy in a serodiscordant relationship. So we're starting to add couples. We've increased our risk assessment and counseling for everybody who comes to get HIV tested.

But also, we've started to introduce this new framework, what we call testing and linkage to care for everyone. The concept -- as with HPTN 071 (PopART, or Population Effects of Antiretroviral Therapy to Reduce HIV Transmission), one of the largest generalized population type testing and linkage to care prevention studies that's going on -- is that anyone and everyone who gets tested for HIV deserves and needs to be linked to some kind of care. That automatically includes people who are not HIV positive, getting information and access to something additional, whether it's PrEP or something else, that's going to help them remain safe and HIV non-seropositive. And for those who are seropositive, we already have a roadmap that's called the care cascade.

"What is the prevention cascade that would complement the care cascade, so that anybody who gets tested for HIV gets linked to something that lends itself to an improved outcome, either in the short run, or in the long run?" -- Dazon Dixon Diallo

What we're looking for is: What is the prevention cascade that would complement the care cascade, so that anybody who gets tested for HIV gets linked to something that lends itself to an improved outcome, either in the short run, or in the long run?

Some of these very ideas have come simply from a lot of the questions and concerns that have been presented by people at risk, people who are on the service delivery end, and people who are living with HIV.

Olivia Ford: What are your concerns regarding potential incorrect or inappropriate handling of the rollout and marketing of PrEP for women in the U.S.? What might that improper approach look like; and what could potential antidotes be?

Anna Forbes: One of the biggest questions that we have to answer is, what kinds of support do women need in order to be able to be adherent? Because we know that being adherent is the name of the game, with regard to PrEP. If it turns out that the intermittent PrEP studies show that you can still achieve success with using it intermittently, then there will be a little less of a panic about that.

But I think that the big take-home message from FEM-PrEP and VOICE was that it's all about adherence. And we know from other research that adherence to drug regimens, even for positive women, can be a big challenge, because there are so many other demands on women's time, and resources, and attention.

I think what's really critically important is to figure out what will really work. What kinds of supports work? Do we need integrated care, so that people can accomplish more appointments in one visit? You know, you can do your family planning care and your PrEP checkup in the same visit. Do we need more transportation subsidies? Do we need more child care? We need all of this, obviously. But I think we really need data to show us what are the biggest factors that contribute to lack of adherence in women's lives, and what do women find helpful to support their adherence.

One thing that I find frustrating is that we have known ever since the Working Group got together, which was March of 2012, as Dazon said, that there has been a demonstration project proposed within the CDC that will be the first one to enroll cisgender women, as opposed to transgender women, in a PrEP trial, domestically. It has been described to us in some detail by the folks who are working on it in the CDC. And it sounds very much like the kind of trial that we need to do, or that we're going to need many of, to get answers to some of these questions. They're looking at doing it in federally qualified health centers and other health provider venues women are already using. They're looking at what does it take, in terms of infrastructure costs to the health center, to provide PrEP to women.

That trial has yet to be fully funded. It's been more than a year and a half now that we've been asking these questions. There are trials, demonstration projects, enrolling men who have sex with men and trans women, that are already funded. And this one isn't. And that doesn't make me feel very confident about the level of priority that's being given to finding out what we need to find out to make PrEP work effectively for women.

I just want to say one thing about consequences, and that is: female condoms. Look what happened to female condoms. They were very badly introduced in this country in the early '90s. They were on the shelf momentarily. There was no real promotion of them. There was no effective campaign to educate providers about them so that providers could then educate their patients. There was no real effort to make them as widely used as they could be. And they're as effective as male condoms.

There was no reason on God's green earth not to hype them as the next big HIV prevention tool. But it wasn't done because it wasn't perceived as a priority. And the upshot of that is that female condom use is very low, both in the U.S. and internationally; the price is still very high, and that's partly because interest and uptake is very low. As soon as there's dramatically increased uptake, there's going to be a lowering of the cost because of efficiency with production.

There's also no competition, because very few other producers around the world were inclined to get into the female condom business, since they weren't selling. It's just been a completely missed opportunity. That's starting to be corrected now because, fortunately, we're having another wave of female condom promotion that is actually starting to produce some really good results in some cities in the U.S.

But, again, here's an intervention that could have been fantastically useful to women. And we've missed nearly two decades of its potential effectiveness, because of lousy introduction.

Zil Goldstein: I think that, as a community, we're still trying to figure out whether or not PrEP is a good thing, and how we can make use of it, both as a community of health care providers, and also as other service providers and somewhat more horizontally oriented, in terms of power structure, health care providers, or social service providers.

I definitely got really excited when the PrEP news was first released. But I'm backing off on that excitement, as all of these other questions come up. I think that we can all get on board with condoms in a way that we're not all necessarily on board, quite yet, in terms of using PrEP.

Olivia Ford: As a follow-up to what you said just now, Zil, about being excited at first and pulling back a little bit on the enthusiasm: What would it look like, to each of you, in different communities, if PrEP were used, and disseminated, and educated about, in the most comfortable possible way? This question assumes appropriate, if not unlimited, levels of resources allocated, and cooperation from potential allies and partners.

Zil Goldstein: I'd rather have a vaccine, honestly, but if PrEP is the tool that we have right now, then I don't know. It's hard to explain risk stratification to someone. That's the big piece of the education puzzle around PrEP that would need to happen before I would be as gung ho about using it as I was when the first study came out.

Dazon Dixon Diallo: From my private perspective, there's sort of this dual faction going on in my head, in the sense that since it's here, we have to be diligent about making sure that everything about it is as appropriate and effective as possible for those who need it the most. At the same time, not overhype it as the next new answer. Does that make sense? Because it's not. It's an additional tool for a specific set of folk. And that is the way it has to be articulated. It has to be informed that way. And the service has to be delivered that way -- which means, just like everything else in this longer list of high-impact combination prevention, people should be aware that this is part of an overall toolkit -- or makeup kit, as my staff call it -- and that it's not this huge panacea for people who are not living with HIV.

I think that that becomes the fear and the tension between getting folks treated and getting access to PrEP, or between getting more condoms on the street and getting access to PrEP, or doing more interventions. I also have an evidence-based intervention that we've been doing for 25 years that's just now making it to the status of an official behavioral intervention (i.e., DEBI status), just when they're getting ready to put DEBI to rest.

So what is meaningful about continuing behavioral interventions that are integrated with the new technologies that are coming along? We have a different strategy and opportunity to adapt models for specific groups along the way, and individuals. That's what I think is a key thing that requires community, federal partners, and industry to really get right -- is tempering, managing the message, integrating the delivery of the tool, and normalizing it into our overall HIV prevention infrastructure, as opposed to exceptionalizing it. Because we know what damage that can do.

But on the other side of it, if nobody knows about it and if there's no demand about it, then it is an absolutely irrelevant tool. And so, similar to what Anna was saying in terms of paying attention to what happened with the female condom, that's exactly what has to happen here. You have to be as forthright on the information to say that this is available, and here's the context in which we think it should be most used, or most available. And here's the process for getting that done.

Anna Forbes: I think the best analogy is family planning. We never say one family planning tool is the best thing to use. It's always: Here's the whole array; this is what you have to choose from.

"The AIDS field has been nothing but one silver bullet after another: Each time something new comes up, everybody acts like this is going to solve the problem. It's not! Prevention is too complicated for that." -- Anna Forbes

I think that we are way overdue to start thinking about HIV prevention that way. I mean, I'm old enough that I remember when AZT was introduced as the silver bullet, right? The AIDS field has been nothing but one silver bullet after another: Each time something new comes up, everybody acts like this is going to solve the problem. It's not!

Prevention is too complicated for that. Individual preferences are too complicated. What someone can and cannot adhere to is too complicated. The only way to do this effectively is a toolbox approach, as Dazon says, and to be realistic with people about what something can and can't do.

Now, that being said, the first thing people need to know when they come in for family planning is what the whole range of tools are, and how they work, and what the advantages and disadvantages are of each. I think that we have to be getting that information out about PrEP as effectively as we have gotten it out around condoms, as effectively as we have in other countries gotten it out around voluntary male circumcision -- which has been less of an issue here, but a fairly large issue elsewhere -- and that, hopefully, we will be getting it out around microbicides.

The goal is to have people use something, as opposed to nothing. This is harm reduction, right? You want people to reduce their risk as much as possible, recognizing that risk elimination is virtually impossible for most people.

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.

Olivia Ford: Any final thoughts before we close?

Dazon Dixon Diallo: Another question really would be: Knowing what we know and what we don't know about women, what's beyond PrEP? The latest data on HIV incidence are saying that there's been a decrease in HIV cases among women; now they're saying we're 20 to 21 percent of the epidemic. Do we end up going by the wayside -- like Section 4 of the Voting Rights Act: "Prevention is working; we don't need it anymore" kind of thing. How do we make sure that the 1 in 5 women who still could become HIV positive have a chance to not?

As Anna was saying earlier about looking at it through the family planning framework: There's just not enough in that kit that is specific to women that will help us answer that question. It could be in the imagination of the next greatest researcher, or the next best social behaviorist. I don't know. But the question really is: What is out there? And what do we need beyond PrEP to finally end HIV for women -- and their families and their partners?

Anna Forbes: And, if you'll forgive my saying so, how did we become 21 percent of the population when the ISIS study showed the real incidence among women is five times higher than what the CDC estimated?

Dazon Dixon Diallo: Exactly. If we're still trying to wrap our heads around what the incidence actually is, how do we know that? And if we're still trying to wrap our heads around what really indicates high risk for women, as women, then how do we know that?

This transcript has been lightly edited for clarity.

Olivia Ford is the executive editor for and

Copyright © 2013 Remedy Health Media, LLC. All rights reserved.
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