10 Aug 2012

"You can choose not to get HIV": Elizabeth Pisani

HIV expert and author Elizabeth Pisani has been on a mission for over a decade to get policymakers to understand how real-world behaviours influence HIV transmission and to overhaul antiquated, ineffective prevention strategies. She speaks to Fridae about her work in Indonesia, trends in gay Asia, and more.

Ask Elizabeth Pisani what she does, and she’ll tell you it’s “sex and drugs.” Specifically, she’s an epidemiologist: one of the pioneers of UNAIDS who’s worked on four continents, researching, documenting and trying to control the deadly HIV epidemic.

She’s described her work in The Wisdom of Whores, a rather brilliant book released back in 2008. It’s surprisingly funny: much of it is an eye-popping, deliciously witty account of her time working on HIV in Jakarta, hanging out with warias (Indonesian MTF transgender women), drug injectors, activists and bureaucrats. But it’s not all laughs – the book’s also terribly informative, laying out a series of damning conclusions about what worldwide AIDS organisations are doing wrong, and what could in fact be done to fix things.

Her no-nonsense attitude has got her in trouble a few times. She’s been hounded out of a Presidential press conference in Kenya and nearly been lynched at a public health presentation in New York City. Fortunately, it’s also won her some praise, as when she delivered a highly rated TED talk in 2010.

Currently based in London, the 47-year-old has also embarked on a series of voyages around Indonesia, researching her next book, in which she attempts to identify the “darah merah”, the authentic red blood that binds together the sprawling archipelago nation she loves so much. This is why I had the luck to meet the lady herself at the Makassar (Indonesia) International Writers Festival in June, where she switched effortlessly between English and Bahasa Indonesia on her panels. (She also speaks rather good Mandarin.)

As it turns out, she’s just as awesome a lady in person as she is in writing, and a good deal more potty-mouthed. She doesn’t go easy on gay men, either – she insists that we should hold ourselves accountable for the high rates of HIV prevalent in our communities.

æ: How did you get involved in HIV/AIDS advocacy?

Elizabeth: By mistake, really. I guess I happened to be in New York at an impressionable age. I was in my late teens, and it was the beginning of the AIDS crisis, and I happened to have quite a lot of gay friends, so I was extremely aware of that.

But I went away and I was a journalist and foreign correspondent for several years. And then, for several reasons too boring to relate, I found myself in a school of public health. There I discovered a great interest in the study of diseases. That was in the mid-1990s, and it was just the time when it the extent of the HIV problem in the developing world was becoming obvious. But it was also at a time when HIV was most heavily laden with the prejudices associated with the way it developed in rich countries – “the fags’ disease”, basically. Oh, throw in some junkies and maybe some hookers.

It was a political bloodbath, really, and that made it very, very interesting to me. And so having discovered the joys of epidemiology, I concentrated on this field, and got to hang out in brothels and gay bars, which is never a bad thing to do.

æ: When did you first come to Indonesia?

Elizabeth: I first came to Indonesia because I was posted here as a journalist. That was in the dawn of time, the late ‘80s – that’s giving away my age – and I really loved it.

After I finished studying epidemiology, I went to Geneva [to work in UNAIDS]. With the arrogance of the “newly educated”, I helped them to write “cookbooks” for how to track HIV epidemics and measure risk behaviour. Then I found a job in Indonesia, and those cookbooks I made, I had to take into the real world. And there was a fair clash between the theories and the realities of the field.

æ: Could you tell us about your work there?

Elizabeth: I worked in a US funded program with the Indonesian Ministry of Health to help them to strengthen their HIV surveillance system. So I did the first studies of HIV in gay men and male sex workers and revived a moribund surveillance system in transgender sex workers. I think we were pretty shocked by some of the early results. The first study that we did in transgender sex workers. When I calculated the sample size, [we predicted] 4% HIV prevalence, ad my worst-case scenario in was that it couldn’t be worse than 10%.

I remember going to the lab to pick up the first wave of 250 samples that I sent in [for syphilis and HIV tests]. They had very helpfully colour-coded the results: red was the positives and green was the negatives. And they gave me the sheet, and a quarter of it was red. And I thought, “Fuck me, that is a lot of fucking syphilis.” And then I hold out my hand and asked for the HIV results – and she said, “Those are the HIV results.”

And I cried. I sat down and cried. One and four of transgender sex workers in Jakarta, people whom I’d been having my toenails painted by again and again for the last few months of the study, were HIV-positive. And it was so much worse than our worst expectations.

The reason why we did this study was a leader of the waria (transgender or “third gender”) community, had come in with this proposal for IEC – Information, Education, Communication for transgender sex workers. So when I got the results, I got on my motorbike and went to her salon where she was busy giving somebody big hair. And I said: “Len, here are the results. 1 in 4 is already infected. What do you think?” And she was very, very calm. She was quiet for quite a long time. And she said: “We don’t need an IEC program then, we need a treatment program. We need to help these people.”

æ: What did you do then?

Elizabeth: We set up a clinic as well as a prevention program to care for people already infected. And what was interesting was that it wasn’t just Lenny saying. “We need a treatment program”. Lenny said, “We need to get people together to discuss what we need.” (The transgender community in Indonesia is extremely well-organised. They have these cells and each section has a leader and a hierarchy, so it’s very easy to get community responses going. If the government were as well organised as the waria, this country would be a lot better off.)

So we organised a community meeting for each of the five areas of Jakarta. And I said, “I’ll make a presentation with the data.” And I make this presentation with pie charts and bar charts, and I took it to Lenny, and she just laughed her head off. Instead, we spent a long, long night drawing penises instead of pie charts to show distribution of condom use. We drew 100 penises on a poster and covered 15 of them with condoms to show the condom use. And we drew 100 waria and then coloured in 22 of them at random. (Penises are easy to draw, but waria are not easy to draw.)

And it was very interesting, when we put up our poster. Everybody looked at each other. Everyone was saying, “Yang mana?”, “Which one of us?” I think it was very powerful. We didn’t plan it like that, but everyone was like, “It could be me. Everyone should go and get their test results.”

When research is designed with the community – I hate that fucking word – but when it’s designed with people who are part of the research, when they’re part of the design from the start, you’re much more likely to get results that are meaningful and interpreted correctly. So it was quite a lesson for me. You don’t just make your plans in a vacuum; you actually make them on the basis of the needs of a community.

æ: What trends would you say are taking place in LGBT Asia now?

Elizabeth: I’m very out of date on the data, so I would not put myself out as an expert on this, but what I’ve observed over the last decade or so is that there is a homogenisation of the gay scene in Asia. It’s becoming more and more similar in more and more countries.

Even 10 years ago, there was virtually no gay scene in Beijing. There was something going on in Bangkok, but you didn’t really know what. There was much more obviously a transgender sex worker thing which was much more diverse, but that was a separate story. A gay scene as such was still pretty rare.

But now you could blindfold me and put me in a gay club in almost any major metropolitan area in Asia, and it would take me at least six minutes to figure out where I was – whereas before, you would know where you were in a nanosecond. There’s a homogenisation of behaviours: drugs are becoming more available and common throughout the scene, the music is more universally “doof-doof” – but that was ever thus. And the Internet is being used in much more similar ways as a site for hookups. And I think there’s a much greater similarity with basically the international gay scene that’s American and Australian.

æ: I wouldn’t know. I don’t go clubbing much anymore.

Elizabeth: Shit. I spend more time in gay clubs than you do. The tragedy of my life. Or maybe of yours.

æ: How does this translate into trends in HIV?

Elizabeth: It translates very interestingly. And this your editor will hate, because it isn’t politically correct, but it is epidemiologically correct: HIV comes with gay liberation. HIV comes with the scene. Why did HIV emerge in New York City and San Francisco in the early 1980s? Because gay clubs emerged in New York City and San Francisco in the 1970s.

HIV is not a very infectious virus: it is only very infectious for short periods of time when viral loads are high, and that is principally for six weeks after you first become infected, and then during periods when you have high viral loads associated with other sexually transmitted infections.

What does that mean? That means that HIV only spreads easily in communities where people have more than one partner in that six-week window. So if you’re a gay guy or even an MSM, whatever the fuck that means, and if your sexuality is confined to wet dreams about other guys but never get a chance to exercise that sexuality because you’re sitting in a small town somewhere in central Java or Zhejiang province, or even because you’re sitting in an HDB in Singapore living with your parents and don’t get to go out after 10 o’clock at night, or even if you do get to go out at 10 o’clock at night but there’’s nowhere to go to meet other partners – then HIV isn’t going to get very far.

But as soon as you have a critical mass of people in physical space or in virtual space to have the ability to meet partners and turning over partners, and you have a culture that allows that, you create conditions for the spread of HIV.

That’s the downside of a gay scene – it’s about alcohol, it’s about clubbing culture, it’s about a go out and what the fuck culture; a go out and fuck culture. It’s not the fact that you’re homosexual that increases your risk; it’s not the fact that you have anal sex. It’s the fact that you have sex with a number of partners in a short space of time.

Which is why I don’t buy the MSM thing. I don’t’ care about “pasangan yang setia”, faithful partners among gay men, any more than I care about them among heterosexuals. I do my prevention program among sex workers and young people in the party scene who are getting high and getting laid. I’m not going to the HDBs and banging on doors and telling old married couples that they should be using condoms, and that’s true of homosexuals as well as heterosexuals. And that’s true about the scene.

The problem is that virtual scene, the Internet scene, creates significant difficulties. Because if people are meeting partners in a physical space then I can meet them too. But if people are meeting partners in a virtual space.... I can get a condom into a sauna, into a cruising space, into a bar. But I can’t get a condom onto the Internet.

Now the upside, the part that your editor might like a bit more. The upside of the emergence of a gay identity and the tolerance that allows for gay clubs to exist – the upside is that it does come with a sense of community that also allows for a shared sense of responsibility and a shared sense of caring together about sexual health and all kinds of other things. And it was certainly that sense of community that created the first and to date the most effective response among HIV, which is among gay men in rich countries: the US, Australia, UK, a lot of Europe. Those responses did not come from the government; they did not come from health agencies. They came about from the communities. (That sense of community has diminished in various countries, and so has the HIV response.)

My observation – and you may disagree – my observation in the gay communities in Asia with which I’m familiar, is that that sense of community is not well developed. Basically it’s still at the stage of “Hurrah, finally there’s somewhere I can go to party, get drunk, get laid.”

æ: I’m sure you’ve suffered a lot of flak from your statements.

Elizabeth: It’s kind of a joke, that hate mail thing. My favourite bits are the ones that call me homophobic. Let’s see: my roommate is a gay hooker, 70% of my friends are gay, I never get laid because I do nothing but hang out with gay guys… I’m the world’s biggest fag hag.

But I do think the gay community has got a bit precious. Anything you say against them has become homophobic. And I don’t give a fuck who you screw, but if you do dumb things I’m going to say so. We sometimes have rates of HIV that are 10%, 20% or 30%, even where there is 100% availability of knowledge, 100% availability of condoms. And yet we are not allowed to say that maybe there is something that is wrong in the gay community. That gets censored.

Homophobia cannot transmit a virus. You can do all the whingeing you want, but there comes a point where the community has to look at itself and display some responsibility for its actions. We’ve managed to take personal responsibility out of the equation entirely, because it is strongly negative to say, “Actually, you know what? If you get infected these days, quite often it’s because you did something really dumb.”

æ: But we all do dumb things.

Elizabeth: And what would your life be if you didn’t fod really dumb things? That was how I started my TED talk: “People do stupid things. That’s what spreads HIV.” But I just think we tiptoe around this.

æ: Are there any other HIV myths that you want to clear up?

Elizabeth: There’s something that is a very major concern now, and I don’t know how much of a concern it is in Singapore – probably not much compared to Europe and the US. But there’s this whole belief that treatment is prevention: that because there are drugs out there, drugs lower your viral loads, and therefore if you’re on drugs you’re not going to infect someone else.

Very often now, even in communities where one in three people is infected, people hook up and don’t even discuss HIV and condom use – the logic being that if he’s infected, he’s probably on meds, so he’s not that infectious anyway. But here’s the thing: over 50% of transmission happens within six weeks of someone being infected, when they don’t know they’re infected and they’re certainly not on meds. It’s actually safer to fuck someone who knows they’re HIV-positive and is on meds than to fuck someone who says they’re HIV-negative.

æ: Wow. Perhaps a word about your upcoming book?

Elizabeth: I’m trying to explore right now what brings me back to Indonesia, what it is about this country, although this country is endlessly infuriating and frustrating and drives me mad, yet I keep on coming back for more. Sometimes it feels like it’s a bad boyfriend: it makes you laugh and make you smile and make you feel warm and fuzzy inside, and you know it’s all going to end in tears but you keep on coming back for more.

So I’m trying to figure out why that should be. I’m spending a year travelling around the outer reaches of Indonesia, hoping to define this indefinable beast. And if all goes well, the book will be published by Granta in 2014. My working title is Taking Tea with the Dead.

æ: Is there anything else you’d like your readers to know?

Elizabeth: You are responsible for your own behaviour. You are responsible. HIV is a choice nowadays. And you can choose not to get it. And don’t come whining to me with stigma, etc, etc. If you’re having sex with another guy then you’re not in a situation where stigma is an issue. You may experience stigma in other areas in your life, but if you’re about to take it up the ass, you’re not facing stigma. You can use a condom.

Elizabeth Pisani’s book, The Wisdom of Whores, is available from major bookstores. She also blogs about HIV issues at wisdomofwhores.com. She is also documenting her travels and reflections on Indonesia at her new blog, Portrait Indonesia, at Portraitindonesia.com