Before I met Judy Auerbach in Chicago for our interview, we were both attendees at the Lancet-Cell translational medicine conference “What Will it Take to Achieve an AIDS-Free World?” in San Francisco. She spoke on the final panel of the conference with Wafaa El-Sadr, Francoise Barre-Sinoussi, Myron Cohen, and other pioneers in the field.
I began by asking her about her impressions from the conference, which preceded a lengthy conversation about topics ranging from considerations of identity in cure research to PrEP for women and HIV/AIDS awareness.
Dr. Auerbach had such insightful things to say that I have favored leaving our conversation and her responses intact, providing context and paraphrasing where necessary.
My first question for Dr. Auerbach referenced a comment she made in her panel about the keynote address by NIH/NIAID Director Anthony Fauci. In a discussion of the HIV toolkit, he made a remark about having “moved beyond the simple tools of condom use and needle exchange” to more complicated biomedical interventions such as pre-exposure prophylaxis (PrEP), treatment for prevention, and voluntary male circumcision. In her introductory remarks, Dr. Auerbach pointed out that rarely—especially to social or behavioral scientists—have condom use and syringe exchange ever been considered “simple” interventions. She said “I saw that resonate with several people once I brought it up. I don’t think most people heard it that way, but after my panel I did have some social scientists come up to me afterward and say they caught it as well.”
Clara Bertozzi-Villa: Do you feel that the tools we have right now are enough to halt or slow the epidemic? And if so, how hard is that even in an ideal world where social and behavioral considerations are being made?
Judy Auerbach: It depends upon what you mean by tools and it depends upon who the “we” is. The “we” is never challenged because we all talk like that and we are all part of the response and we all say “we this, we that”. But I think that’s part of the point because a lot of what I would say as a social scientist is that there are different kinds of tools that have been at our collective disposal, some of which have been taken up indigenously by communities that have to do with community strength and solidarity. Social scientists like Catherine Campbell and others have written about AIDS-competent communities, a lot of the writing having to do with social capital—with people having the social ties and networks and resources (spiritual, interpersonal, etc.) to generate a collective response that affects the way HIV does or doesn’t enter their communities and with what effect. So that’s one set of tools that’s really about community organization, mobilization, communication, and so on.
That’s not what everyone was talking about in the sphere we were just in for three days. They were talking about technologies, like a vaccine—which we do not have and have not had for three decades and have spent probably billions of dollars trying to get. We have antiretrovirals as drugs which we can use in many different ways. We have medical male circumcision, which is 50-60% effective for adult males if it’s done in certain ways. Those are the key things that everyone is talking about.
And condoms—people like to dismiss condoms nowadays. (That’s male condoms—people don’t even talk about female condoms.) You could say “That’s a tool we’ve had forever, and it’s not that it doesn’t work, it’s just that it’s not used in all the ways it should be used.” And that’s a function of people’s desires not to use condoms, difficulties in using condoms even when you have them, condom stock-outs, the fact that in the US you can’t put condom ads on the television to promote them, no one even sees or hears about female condoms at all, they’re expensive, etc. So you can go down a whole array of things that are really social, structural, and economic considerations beyond the actual technology. It’s never about the actual technology existing and that’s the end of the story. It’s about how it gets implemented, taken up, used or not, and what creates the environment for that to all happen in a positive way.
That’s how I answer the question of if we have enough tools. I think with each one, each tool somebody might name that shows efficacy at a certain level in a clinical trial, we need to actually look at implementation. We’re seeing that for male circumcision—which showed around 50-60% efficacy in trials, in many countries and contexts people do not want it. You hear that in some places there was a lot of scale-up and uptake initially, but in other places men don’t want it. And in other places, forget about it, because it’s still culturally laden. It can have religious associations. And people are interpolating, saying, “let’s circumcise babies”—well, the studies weren’t done on infants, they were done on adult males. But there are more data coming out from social scientists who are going into communities and doing more qualitative work and discovering all the resistance that’s actually happening to male circumcision that doesn’t get reported. What you hear at this kind of meeting is “we have to scale it up, we have to create demand.” What I hear from the social scientists is that they talked to these men and some are saying “I’m not inclined necessarily anyway” but more often what they’re saying in places where there’s been some support for it is “Wait a minute, the message we get is that you have to keep using condoms too because circumcision is only 50-60% efficacious in preventing acquisition. So if I have to use a condom anyway, why do I have to go get my penis snipped?” Which is a reasonable question to ask, and I think holds true for PrEP as well.
If the public health message is that we have these tools, and they’re pretty effective but you also have to keep using condoms, a lot of reasonable people are asking “Why do it?”
So that’s the complicated answer that a social scientist will give you. There are some tools—some strategies—some are designed by scientists, and some are developed by communities and individuals indigenously, and it’s always a question of the extent to which they are desirable to enough people, made available, and that people take them up. And the issue with the use of the term “we” is, who exactly is “we?” Who is deciding what to introduce and scale-up for HIV prevention or care in any setting? Whose interests are being expressed, and whose are not?
I next asked a somewhat scrambled question about funding allocation and fulfillment of research scopes that related to Dr. Auerbach's implementation science paper published in 2011. She answered a more interesting question instead.
JA: In the research world, clinical trials are the end-all, be-all of the medical sciences establishment to determine efficacy if not effectiveness of some strategy. They typically start with having a drug/tool/technology that clinical scientists want to test and asking where they can go to do that. And then they make the decision based on incidence levels and populations for whom they think this will be a useful strategy, whether that’s a microbicide or a vaccine, or something else.
What they don’t typically do is go to a community or wait for a community to come to them. They don’t start by talking to people in the community about their experience with HIV and their knowledge and understanding about it and figuring out what they want. So you constantly run into these problems like—getting back to PrEP—the international data from the trials that involved women showed these very complicated findings. In the couples studies, it looked like women were fine with using PrEP. They took it up and it had the same levels of efficacy as in men. In the trials of single women who were considered to be at risk on an individual basis, they found low adherence so you couldn’t show whether the product was efficacious or not.
So everybody’s all atwitter and asking “What it is about women?” And the initial analyses that came out from the VOICE trial and the FEM-PrEP trial in particular seemed to say: What’s wrong with those women? Why don’t they take the drug? There’s so much HIV around them. How could you not take a pill that would save your life? How could they tell us they were taking the drug and then not take it? So the trial’s failure was blamed on bad women, faulty women.
Then there’s a qualitative sub-study that happened with the VOICE trial that’s beginning to generate data around how women perceive that drug and antiretrovirals and what was going on in their community. And there are some really straightforward answers. The little blue pill [Truvada] used in the PrEP trial is the same pill that’s used to treat somebody with HIV. So in comes all this stigma about having this drug in your possession and a lot of the women in the qualitative studies are saying that even though they tell their boyfriends or husbands that they’re in a trial and what the nature of it is and that it’s for prevention, they think that the men are assuming they have HIV. So the levels of comprehension and understanding about these things—the perception, the stigma, all that stuff—how that couldn’t have been known—is a mystery to social scientists.
CBV: Because it would have been more intuitive to go to people first and say, “before we do this, tell us how it cannot fail terribly.”
JA: Yes, or, “if you see this little blue pill, what does it mean to you?” The people who did the trials that are hearing this are shocked by these responses. So that’s the persistent problem with clinical trials is that they don’t really have the right people doing serious ethnographic and grounded, informed research in communities to ascertain what is of value to them and what tools might actually be used and desirable.
What I also wanted to say about PrEP is that you have these data from the international trials showing that women did not take the drug for oral PrEP when it was prescribed and when they were participating in the trials even though they said they were. So you have this big adherence problem. Meanwhile, over here in the US, no women have been involved in the big clinical PrEP trials to date.
With AIDS United, I conducted a focus group study two years ago (presented at AIDS 2012) of American women who you could define as “at-risk” by virtue of the HIV prevalence in their community, their social networks, drug use, and the fact that they were accessing community-based services that assist women with reproductive health and/or HIV prevention. Basically the same cohort you would recruit to do a clinical trial of efficacy for oral PrEP in American women. We asked them, first of all, if they’d heard of PrEP (“No”), then we’d describe what it was and what the trials had shown, and then asked questions such as What kind of women might use prep? Would you use it? Under what circumstances? How might it affect your relationships? What about using a condom at the same time? What if your man’s on PrEP? Where would you like to get PrEP if it were available? What are your concerns about it? What would be the opportunities it affords?
A number of things came out of that. One was that most women, when they heard about it, thought “this could be a cool thing” and that many of them would take it. They were concerned about side effects, cost, etc. Furthermore, the at-risk women in the US are distrustful of men and distrustful of government. Many of them are black women, and distrust of government and science is heightened in black Americans who have experienced abuse. The take-home was that if it’s generally safe and effective and women can take it on their own and it’s paid for and the side effects are nominal, there are a lot of women in the US who would be interested in taking it.
So then along comes Gilead who did this study in which they looked at retail pharmacy charts of people for whom Truvada has been dispensed across the US since the drug has been approved for PREP. They culled out uses of Truvada for infection rather than for PrEP. Then they disaggregated it by age, region, and sex. Lo and behold! A majority of the prescriptions were for women.
CBV: I remember someone presenting this at the conference—he said that there were a lot of women taking it in the southeastern US and actually seemed annoyed that there weren’t more gay men taking it and that all these women were using it instead. And I thought, “Isn’t this a good thing? Can we have them tell their friends?”
JA: You heard that the same way I did! So we’re back to our question about the right tools for the right people. The PrEP conversation has been dominated by an assumption that primarily gay men are going to be using it because that’s who needs it in the United States and because most infections still occur among gay men. So that’s exactly how I heard that too, and those of us who have been looking at American women and PrEP were not at all surprised by the Gilead trials. Our focus group data were substantiated by it. Women who are in the US who are at risk of HIV infection may be more likely to take a pill a day than young women in sub-Saharan Africa. Maybe they’re more used to taking a pill, which brings up the contraception issue.
Whenever you’d bring up PrEP, a gay man or a representative of gay men would say “oh, it’s so hard to take a pill a day” and the women in the room would look at each other and say “Really? We’ve kind of had to do this for years, it’s really not that hard.” Now not everyone can take a pill (and that’s the story of contraception) but it’s a good analogy. You have options, and women can change what they do and what they use over the course of their lives depending on their relationships and what works for them.
So that’s what we need for prevention, too—options for people in different stages. But the point is that it’s not so weird for a lot of women. Oral contraceptive use was a very common experience in our focus group. 90% had had some experience taking a pill a day. That might not be true in other parts of the world. In many African countries, the injectable contraception is much more popular than oral contraception.
CBV: It always surprises me how little people know about what the epidemic is right now, and they certainly don’t know that the increased rates of infection are in young black gay men and in black women. Is there likely to be an increase in awareness or of national-level campaigns?
JA: There are these huge campaigns, like We Are Greater Than AIDS, which is a collaboration between the Kaiser Foundation and the CDC and the Black AIDS Institute and all kinds of other groups who really keep trying to find ways to raise consciousness. There are billboards on all the bus stands in DC and San Francisco and Chicago, and have people who look like the people being affected by the epidemic. There are different kinds of people, different kinds of messaging, they’ve tried everything. TV ads, videos, websites, events, so there’s an ongoing attempt to do that. And it’s twofold—both for populations that are perceived to be at greater risk of infection, and then really broad national campaigns.
So it is being attempted all the time. Kaiser has yet another survey out about American’s attitudes about HIV. Just by asking the questions they’re trying to get people to think about it. There are people who lobby for television shows to feature plots and sub-plots about HIV. There was recently a popular show that had a storyline about a needle stick. They’re working on it so that when the mainstream American population watches something like Grey’s Anatomy they get an HIV message.
While discussing the biomedical focus of the conference we had attended, Dr. Auerbach brought up the importance of considering the significance of a vaccine or cure—and of the intended but intangible goal of an AIDS-Free Generation or World—to those living with HIV.
JA: Francoise Barre-Sinoussi [Nobel Prize winner and current President of the International AIDS Society] identified from the very beginning that you have to address the psychosocial element of cure research including attention to HIV positive people. There are people in the Cure Advisory Group at IAS who are working on projects and studies that interview HIV positive people about their willingness to participate in cure research trials to determine the ethical issues attendant in that.
I’m really quite interested in what the search for the cure means for HIV positive people, given that we have institutionalized an identity and valorized that identity—it has become a bit of a badge in many cases. There’s a special status that entitles you to a lot of things and to lose that – putting aside the fact that, of course, nobody wants HIV—I think there’s a lot that is unaddressed yet about what will happen when that identity changes or ceases to be available.
CBV: Especially because part of becoming ok with your HIV status is accepting it as a part of you, and usually joining a community of some kind or coming to terms with the fact that it may be something only a few people will know about you. As you said, you build part of your identity around it because there’s still enough stigma that you have to choose—either you’re out or you’re not.
JA: And when you are out you realize you become part of the community that has special status and is institutionalized in all these ways. I don’t want to be glib about this or say that all HIV positive people are going to lose their identity—I don’t mean that. I think there’s a lot more there that people haven’t really thought about yet that’s quite challenging. And, related to that, there are a number of HIV positive people who really bristle when they hear “AIDS-Free Generation” because they feel it negates them as human beings. Most people will never say that they’re happy they have HIV, but you hear a lot of stories of people saying that their experience of the disease brought them to a lot of other happy places or enabled them to do other things that are actually good. So I think they can interpret that language as “you’re basically negating me as a human being” or “you’re trying to wipe us out.”
CBV: Some people were comparing the search for an AIDS cure to the cancer cure, noting that the cure for cancer (or, really, cancers) is also elusive but that the community has fully adopted that terminology anyway. In comparison, most of the speakers at the conference seemed very reluctant to use the word “cure” unqualified by other terms, like “functional.” But since many cancer communities use the word cure and/or build an identity around survival of cancer, maybe that’s the word and world that will have to be built. You’ll might replace being HIV positive with being an HIV survivor. It would be a shame, otherwise, to lose the communities and structures that have been built by and around those living with HIV and AIDS.
JA: And I think some of that’s in progress. San Francisco AIDS Foundation hosted a forum about older gay men, AIDS survivors, many who are experiencing what is being called “AIDS survivor syndrome,”. Those who saw all of their loved ones die who were so stigmatized as a people and a community because of their homosexuality and then because of HIV but they have survived. So there’s everything—the guilt and the trauma and the internalized historical trauma.
People who thought they weren’t going to live a full long life made choices early on—these are people now in their 50s, 60s, 70s, who didn’t expect to live past their 20s or 30s—to cash out their insurance policies, spend all their money, quit their jobs (some had to and they’d go on disability) and so on. Prolonging this decade after decade forces them to live very marginally both economically and socially. In San Francisco, where the housing market is so high, the biggest issue concerning aging and HIV is unstable housing. There are lots of folks attending to the clinical needs of those aging with HIV disease but this question of surviving and not having stable housing is huge.
JA: Now—we haven’t even talked about drug users, and we would be remiss if we did not. There have always been advocates for injection drug users, in particular the Harm Reduction Coalition, the syringe exchange groups and so on. And now a lot of the attention has been elevated to amending drug policy at a larger level than for HIV-specific reasons. So now I think “who’s going to advocate for injectors?” There are very efficacious interventions that have been implemented by communities, such as syringe exchange and methadone maintenance, which has always been around but has been scaled up since it has HIV prevention potential. As a consequence we have really low rates of infection now among injectors.
CBV: John Bartlett came and spoke at the University of Chicago Medicine a few weeks ago and said at his Grand Rounds presentation: “You know, needle exchange has actually been really successful but it’s very touchy. So keep doing it, but don’t tell anyone about it.”
JA: And he’s right—it’s crazy that people still have to say that. It brings up questions about whether we can use federal funds to support syringe exchange programs. We finally got the ban lifted on using federal funds and then within a year it was back, notwithstanding all the evidence that says it’s effective. This is a case where you need the evidence, but the evidence isn’t enough on a political front.
CBV: That seems comparable to but maybe even more polarizing than the issue of using federal funds for things like PrEP. Even for those who don’t like the idea of people having kinds of sex that they’re not ok with, they still understand that it happens. Whereas someone who isn’t an injection drug user can’t necessarily wrap their head around the idea that people are going to do it regardless of risk and that needle exchanges makes it safer. It’s too morally fraught.
JA: It’s also really important to say that even though we’ve seen rates reduced precipitously in the United States, that’s not true in other parts of the world. There are epidemics that are still defined by injection and other drug use, like Russia. So, harkening back to what it will take to achieve an AIDS-free world, as some people said, the big categories are political will and resources. On the political front, if you have a government that does not allow for methadone maintenance at all—or makes it illegal—much less syringe exchange, and basically saying it won’t allow for the kinds of interventions we know are effective for this route of transmission, you’re never going to end it.
CBV: I asked some of my coworkers if they had questions for you, and one of them wanted to know how an academic institution ought to go about establishing collaborative relationships with a community based organization that adds value to that organization. The university is usually trying to gain something from that relationship, but how do you also ensure that they benefit from the collaboration?
JA: It’s hard to answer that simply, because I’ve been at both ends of these things and it’s something I’ve always cared a lot about. One route is through research. That’s what you have as a university—the capacity to do research that’s meaningful to people. You can create mechanisms for doing truly community-collaborative research where the concerns and questions are framed by people in communities and not necessarily researchers. You have the community say that they’re observing something, or they need something, and asking “Can you help us figure out how to understand it better and then manage it?”
So I think successful university-community collaborations require that there be people in both places who have sensibilities about both and mechanisms of funding and support. And taking the feedback of individuals who really understand from a CBO point of view what’s useful to them. So some of it is answering questions but it’s also building the capacity of folks within those organizations to understand and appreciate research and to do it themselves.
As we were wrapping up the interview, I mentioned that one of my friend’s ex-boyfriends had recently been diagnosed with HIV and announced his status on Facebook (before telling my friend about it), and that this was the first time many of my friends had encountered an HIV positive person anywhere near their sexual networks.
JA: For those of us whose social and sexual networks aren’t infused with HIV, it’s hard to know about it. I have highly educated friends who grew up during the epidemic just like I did and they don’t know anything about it unless they ask me. And frankly they don’t want to know anything about it. They trust that it’s still a problem but they’re not spending their time thinking about it anymore.
CBV: I could talk about HIV all day, and sometimes people let me, and then I have to remind myself that they’re just being nice and I should change the subject at this dinner party.
JA: But it’s very compelling and it’s so about… everything. It’s really about everything.
Dr. Judy Auerbach, interviewed on November 7, 2013 by Clara Bertozzi-Villa.