In the run up to World AIDS Day 2010, UNAIDS, the Joint UN Programme on HIV and AIDS, is calling for an HIV prevention revolution. With an estimated 7000 new HIV infections every day, it’s easy to understand why. Despite steady progress in the availability of treatment in recent years, the growth of the epidemic – and therefore of the need for treatment – is still outstripping the rate at which people who need it are being started on antiretroviral treatment. Although treatment costs have come down and in the right conditions HIV has become essentially a manageable (if chronic) condition for many, the costs and logistics of maintaining millions of people on treatment are considerable, and it is far preferable for people to never have to start treatment in the first place. Here are some thoughts from me about some of the things we need to pay attention to if we really want to revolutionise HIV prevention.
Remember who you are
When you work in health promotion, it’s important to think carefully about power: specifically about the differences in power between you and whoever you’re working with. Particularly so if you’re a doctor (which I’m not) or a foreigner from a richer country who is accountable not only to the audience but also to the funders (which I am). It’s all too easy to let your enthusiasm, and your ideas of what needs to be done and how to do it, get in the way of listening to the people you’re working with.
Take HIV prevention. Everyone knows that a condom is a very effective barrier to HIV transmission during sexual intercourse. And if you’re working with people that have sex with a relatively high number of partners, it would seem like THE main option.
And it is: but it’s not that simple. You have to know where to get it and be able to get hold of it whenever you need it. You also have to know how to use it correctly. And if you can’t get it on, you need a plan B – whether you’re the one supposed to be wearing it or you’re the one trying to get it onto someone else.
The land of make-believe
A few years ago I was asked by an international NGO to review the HIV prevention programme it had been running for sex workers. A common problem with a lot of HIV prevention programmes is that they often fail to provide all of the different services and work on all the different aspects that together add up to a “comprehensive” programme. They might be good at what they do, but just not able to do everything – for instance small local community organizations might be very good at outreach work – but they are rarely able to provide clinical services or ensure a reliable supply of condoms. The result is that you get fragmented programmes that don’t really fulfill all the needs.
As it happens, the NGO I was working for had a relatively comprehensive approach. They managed this because as well as directly training and supporting outreach workers, they had a large scale condom distribution programme, and they also worked with a network of clinics across the country, which they supported through training and by providing drugs.
I wanted to see how the organisation went about training and mentoring the sex worker peer educators that it employed, so I sat in on one of the training sessions. The doctor running it had been doing the same gig for years, previously with a different international NGO before it left the country and was replaced. He was clearly very popular with the peer educators: he was funny, supportive, and not in the slightest bit judgmental.
Unfortunately, some of what he was saying made no sense.
His party piece was to organise role-plays on condom negotiation. Building “condom negotiation skills” is pretty much a staple of any outreach programme with sex workers – I’m sure I’ve written those words into quite a few funding proposals. It sounds sensible enough, but on the ground, it often involves an expert who has never sold sex coaching people who have on how to handle difficult punters. In this case, the doctor-trainer and one of his colleagues would play a small sketch, taking on the roles of sex worker and punter respectively. His camped-up turn was entertaining, not least because you couldn’t find an unlikelier sex worker. In their version of events, the punter came up to the sex worker and asked “how much?”, got given a price, then said “OK but without a condom”. And after an exchange which involved the punter offering more money for skin-to-skin sex, the punter finally stormed off, furious at not getting his way; meanwhile the trainer playing the empowered sex worker beamed and steeled herself to fight off the next punter. In a second version, the punter agreed to the sex worker’s insistence on condom use, for which she received warm applause. After the trainer had finished his turn, he got the peer educators to copy the role plays, one by one. They did so, playing almost identical scenarios.
It is obvious what is wrong with these scenarios. It’s not really in most sex workers’ interest to tell clients to get lost – losing a client is a disappointment, not a cause for celebration. It’s also problematic to assume that things like prices and condom use are always negotiated at the start; that a punter who agrees to using a condom will keep to that agreement; and that it will be possible to get the condom on the punter and make sure it stays on (for example: ever tried to get a condom on a penis that isn’t properly erect?).
I thought it would be interesting to ask the group to do a slightly different role play, so asked them to play a scene where the sex worker got her money but no condom was used: in other words a safe sex act that didn’t involve a condom. The trainers went first, and failed – their scenario ended with unprotected penetrative sex. The peer educators looked a bit concerned, talked things over, then copied word for word what the trainers had just done. A volunteer who was sitting with them told me that they had come up with a plausible scenario and had changed it at the last minute, because they assumed that what the trainers had done must be the “right” answer. So we asked them to tell us what the original scenario they had come up with involved. One explained that her strategy for stubborn punters was to try something different… she gave an example of how she persuaded them to accept a hand job. The other peer educators nodded in approval and gave some more examples.
Taking a step back
I like this anecdote for a few reasons. Firstly, it shows how people can and do come up with good ideas for how to keep themselves safe. It’s a useful reminder that the “indicators” we use to gauge how well programmes are doing – such as the proportion of sex workers using condoms with clients – often nudge programmes into very limited approaches and messages. (Having said this, at least condom use is largely relevant. One of the main measures of success of national AIDS programmes is the proportion of people who know that HIV isn’t transmitted by mosquitoes – a piece of information that is as useless to people who live in countries with no mosquitoes as it is to those who live in countries where mosquito-borne diseases are a major public health problem.)
The second thing I like about this anecdote is the way it illustrates the power dynamics in public health and aid programmes. The peer educators either assumed that the trainers’ example was correct, or did not want to challenge it for fear of offending the people in charge. It also illustrates the subtle ways in which health promotion programmes can be directive and patronising – at the end of the session, a worried trainer asked me if it wasn’t a danger to “allow” sex workers to do something without a condom.
Ultimately, trainers, consultants, programme managers, and donors aren’t the ones dealing with the risks every day. We’ve got to work in ways that recognise and support what people are dealing with, and constantly evaluate whether our assumptions, our programme indicators, and our idealised narratives aren’t getting in the way of reality.
This blog post owes a great debt to Cheryl Overs; if I hadn’t worked with her I doubt I’d have noticed a lot of what I’ve described.