Thursday, 30 October 2014

What we talk about when we talk about women

EMILY BASS writes: Women are at the heart of the AIDS epidemic--and at the forefront of the search for successful solutions - as activists, educators, trial volunteers, nurses, care givers and so much more. Here in South Africa, this is clear and, on the face of it, simple enough. But listening to sessions over the past few days is a reminder of all the ways that even the simplest statements need to be complicated. Here are a few examples:

1) At yesterday's amazing plenary on key populations, Chris Beyrer, Johns Hopkins researcher and President of the International AIDS Society, talked about how the definitions and measurements of sex work among women in prevention trials really varied quite a bit.
These trials dont have a standard way of figuring out whether women do sex work. (There's many reasons for this; and it is worth acknowledging that for some trials receiving US funding, language is or has been affected by the Bush-era requirement that PEPFAR grantees repudiate sex work--a provision that's since been overturned by the US Supreme Court but is still being enacted for complex, bureaucratic reasons). Anyway--back to the issue. Some trials ask, simply, "Are you a sex worker?" it is hard for women who have faced extreme stigma and discrimination in the health setting to always answer this question affirmatively. 
In some trials, they ask about number of sex partners, exchanging sex for money, food and so on and interpret from there who is engaged in sex work. Beyrer's point was that these questions and definitions weren't standard--and that makes it hard to say, with clarity, what kind of sex work women are doing (or not) in some trials--and therefore complicates the issue of what we do or do not know about sex workers.
2) In a session on hormonal contraceptives and HIV risk that was packed with interesting information, there was a presentation on the differences between the genital tracts of women from the US and from Africa. Wait? I thought. No one has ever done this? Guess what? It didn't seem they had. And guess what else? There are differences. In the Contraceptive Hormone Induced Changes (CHIC) study, women from Pittsburgh in the US and Zimbabwean women are providing samples and information to help investigators understand how the genital tract changes with contraceptive use. The data presented were baseline--eg without contraceptive use. And they found, after controlling for many other factors, that the Zimbabwean women had higher concentrations of CD4 cells in their cervix than US women. (These were all HIV negative women). What causes these differences? The researcher didn't know. But this isn't the first time that the field has paused and realized that immune profiles are different in different parts of the world. So-called "normal" ranges of laboratory values are often set based on information from US or high income individuals--and vaccine trials have had to do preparatory work to re-calibrate and re-define normal in other parts of the world. Clearly, work remains to be done on what this means for women.

3) Liars and housewives: There was a major session on adherence among participants in the VOICE trial. Many participants did not use the gel or pills as prescribed in the protocol--even though they said that they did at study visits, and even returned the right number of pills.. After the trial, researchers went back to try to understand why women said one thing and did another. They found out lots of interesting things that I won't go into here--though you can and should watch the webcast of this session. But what a lot of advocates--civil society, HIV positive women, young women--heard in that session was explicit and implicit questions about "why women lie?" A much-tweeted remark from researcher Ariane van der Straten said " We all lie all the time, every day. These women are just like us." This was welcomed (at least I think that's what the tweeting meant) but it still left us all labelled as liars. That language hasn't sat well with many of the women advocates here and I think we need to be careful how we talk about these findings together, because the liar label is a hard one for anyone to bear. In that way, too, we are all similar. That same day, there was a presentation on early safety and acceptability research on long-acting injectable ARVs--another potential prevention strategy. In the Q&A, a researcher who was asked about acceptability said, that while they've gathered some information it was all from "Pittsburgh housewives." What? Have we returned to the 1950s? In an earlier post, I raised a jargon alert. "Housewives" sets off a major non-jargon alert--that language is not just casual, it's dismissive and almost certainly inaccurate.

We can and must do better, watch our language, work together as women in all our diversity--including transgender women. As poet elder Adrienne Rich once said, this is the "dream of a common language."

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