Revolutionising HIV prevention?

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In this revolution, what needs to be put up against the wall?

In my last blog post I gave an example of how people in charge of HIV prevention programmes can very easily bias things very badly.  I suspect the same issues appear in other types of development work, and in health service provision in wealthy countries.  Nonetheless I think it’s an important reminder because it’s the sort of practice-related nuance that isn’t reflected in the journal articles we rely on for evidence-based programming.  I also think HIV prevention programming is particularly vulnerable to this sort of problem because it’s invariably about sex, and often about types of sex that people find it hard to discuss.  When UNAIDS talks about an HIV prevention revolution I think that these micro-issues related to the behaviour of practitioners, managers and trainers are among the most important things that need to be addressed.  However, there are also quite a few macro-level problems and challenges.

What are they? There are many but here are some of the ones that I don’t think get talked about enough. They’re mainly about prevention of sexual transmission of HIV :

Moralistic approaches

Even when we do know what to do, a lot of people – people who influence these things – don’t like it.  Because despite close to 30 years of the fight against AIDS; despite huge advances in how AIDS is treated; the availability of levels of funding unprecedented for a single health problem: the ways HIV are transmitted remain for many inextricably tied to morality.  Stigma against the virus may be ebbing, but stigma against sex remains as intractable as ever, and many decision makers aren’t prepared to pay the price of addressing this. 

Some are even prepared to do exactly the opposite. What is wrong about abstinence-only policies on HIV prevention isn’t the notion that more people abstaining from sex will help reduce the transmission of HIV – of course it will.  What’s wrong is imagining the best way of achieving this is to say to people: “Forget everything else! Abstain from sex!”.  See also, programmes in the sex industry which discourage and disable sex workers having a say, or even that are complicit in human rights violations.

Poorly allocated funding

In many of the countries I’ve worked in, AIDS is associated with money.  It is unfortunate that in some health policy circles AIDS is seen as privileged “over-funded” because the reality is that there probably isn’t enough money for AIDS, and there certainly isn’t enough money for health generally.  I think this is one of the reasons that there is often an “entitlement” based rather than an evidence-based approach to using AIDS funding.  As someone who helps develop national AIDS plans and funding requests, I’ve frequently been leant on to “share” the money out among different groups because it doesn’t look good to focus resources on “undeserving” groups like sex workers, men who have sex with men or drug users.  As well as being judgmental, it is an absurd to define fairness purely in terms of who gets what money spent on them – since most health problems affect some people more than others, and the cost of tackling different health problems varies considerably.

Poor allocation of HIV prevention funding may also be related to the fact that historically, the epidemiology of vulnerability to AIDS has been something of a free-for-all, where people are defined as being at risk on the basis of worst-case scenario guesswork rather than proper analysis. This blog post provides a good example.

Planning, continuity and financing of HIV prevention programmes

HIV prevention efforts face a particular problem because they are not primarily or wholly implemented by the formal health systems.  While health systems are used to working according to norms and there is a good understanding of the roles of different types of health care worker and health care facility, there is rarely anything of the sort in the nongovernmental or community organisations that are the mainstay of community HIV prevention efforts.  There is often no clear, common standard of what needs to be done and how to do it.  Moreover, the mechanisms for funding these initiatives are often based around short-term grant support, with no guarantee of continuity and often with an expectation that after a few months or years, they’ll magically become sustainable enough for no more funding to be needed. To understand the absurdity of this one only needs to look at how we approach health systems: we don’t imagine health facilities can be funded for a few years and that then they will run themselves. 

Continuity of services is also vital to their effectiveness.  This recent example from Zimbabwe, describing a reduction in condom use among trial subjects very soon after the end of a programme, gives a very good illustration of the problem.  What makes it worse is that while it generally takes a long time to see positive outcomes of HIV prevention efforts (because things like safer sex, and acceptance of HIV testing and STI treatment improve incrementally over time), the negative effects of halting prevention efforts can appear very quickly: if you stop a service all of a sudden, use of that service drops straight away.

There is as much an ongoing need for HIV prevention-related services – whether it’s outreach, condoms, social support, or clinical services – as there is for maternity, vaccination, or health emergency services.  A major re-think is needed on how community programmes are funded – this goes not just for HIV prevention, but also for community based HIV care and support, and probably for health more generally.  I’ve discussed this in more detail here and here.

The bigger picture

One of the major successes of the AIDS movement has been to show how AIDS is associated with all manner of other health and development problems, and with human rights.  Unfortunately HIV prevention programmes are still very often implemented in an isolated way.  This isn’t always inappropriate, but HIV prevention outreach programmes are often narrowly focussed on communicating about the mechanics of HIV transmission, rather than on making links with related health concerns – in particular those related to sexual and reproductive health and, for stigmatised groups, those related to issues such as violence and human rights.  Many of these problems are aggravated by HIV and AIDS, but they exist independently.  Moreover, it looks like we’re approaching a phase of the fight against HIV that is going to be increasingly characterised by technological solutions such as male circumcision, microbicides, pre-exposure treatment, and even vaccination.  These will reduce transmission of HIV but will not remove it altogether – so HIV will still be a problem, just not such a big one.  It is vital that if and when these are implemented as HIV prevention strategies, attention continues to be paid to the broader issues: the millions who still need treatment, and the many millions who will still face poor sexual and reproductive health, and those who face abuses of human rights, irrespective of whether they have HIV or not.

Just… get cracking

There is not much in what I have said that is particularly revolutionary.  People have been saying most if not all of it since long before I got involved in HIV work.  This is why I’ve been slightly unsure of the whole concept of a “prevention revolution” – to me, and to many practitioners I talk to, it is incredibly frustrating to know that we have had the theory and the tools for years but that not much has happened.  In a sense, too many HIV prevention efforts haven’t ever really had the opportunity to succeed at a large scale.  The biggest revolution will be to use what we know more ambitiously and more effectively than has been the case until now.

HIV prevention revolution: think about power dynamics in health promotion

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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.

The pope and condoms – a new dawn?

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“…a first step in the direction of a moralization, a first assumption of responsibility”

The pope has reportedly said that the use of condoms to prevent HIV infection is acceptable in certain exceptional circumstances, giving the example of a prostitute using a condom to avoid passing on HIV infection to others, and assuming that this is merely a first step towards that prostitute (I prefer the term sex worker) adopting a more “moral” way of living.  It is headline news around the world and UNAIDS was quick to issue a statement welcoming the announcement.Some reports state that he specifically used the example of a male sex worker, although it may be simply a case of the noun in the original German text being a masculine one.

This may be significant since if he was using the example of male sex workers and if he was assuming that the male sex worker in question was having sex with another man the use of a condom would in any case not have a contraceptive effect (i.e. prevention of pregnancy).  So it could mean that he is still not endorsing condoms during sexual encounters where a new life might potentially be created – after all, the Catholic position on condoms was originally to do with its opposition to contraception. 

Raises more questions than it answers 

If the Pope was talking about sexual encounters that cannot feasibly result in conception, this is worrying since it means that most vaginal sexual encounters between a man and a woman are excluded.  On the other hand, if this is the correct interpretation of what he said, one might ask whether his acceptance of condoms would also apply for oral and anal sex between men and women?

Another important question to ask, whatever the precise significance of the example used by the Pope, is whether he was talking solely about HIV or also about other sexually transmitted infections?  Many STIs other than HIV also constitute major public health problems.  Is preventing these less acceptable than preventing HIV?

Whether the Pope is talking about male or female sex workers or both, the implication (again assuming that the English translation is reliable) is that it is acceptable for sex workers to use condoms to avoid transmitting HIV infection to someone else.  This suggests that the direction of travel for HIV transmission is invariably from sex workers to others – a suggestion that is both incorrect and stigmatising.  I wonder also if it implies that condom use is acceptable when the sex worker knows that they are HIV positive but not when they don’t know.  Irrespective of this however, it is troubling that in a statement that makes much of the notion of “sexual responsibility”, it appears that the Pope is placing the responsibility for preventing HIV transmission squarely with one party: the sex worker or, if we take a wider interpretation, the partner infected with HIV.  This contradicts years of work aimed at reinforcing the notion of mutual responsibility, and aimed at combating the incrimination and in some cases the criminalisation of people with HIV for onward transmission of HIV.

No change on attitudes to sexual health, women’s rights or contraception

Subject to clarification of the questions above, we may be seeing a positive shift in the Vatican’s position on condoms in relation to HIV transmission.  But let’s not get carried away.  The statement was couched in language that shows that nothing has changed in respect of the Church’s attitude to sexuality – which remains deeply moralistic and disconnected from the real lives of people.  According to excerpts on the BBC website the Pope said:

…the sheer fixation on the condom implies a banalization of sexuality, which, after all, is precisely the dangerous source of the attitude of no longer seeing sexuality as the expression of love, but only a sort of drug that people administer to themselves. This is why the fight against the banalization of sexuality is also a part of the struggle to ensure that sexuality is treated as a positive value and to enable it to have a positive effect on the whole of man’s being.

Moreover, nothing has changed in the Church’s stance on contraception, the consequences of which are also incredibly damaging at many levels.  It remains fundamentally opposed to guaranteeing peoples’ right to choose how and when to have children. If the impact of HIV is important enough for the Church to do some soul-searching, surely the impact of unwanted pregnancies is too?

 Any optimism as a result of this news should be guarded.  As I have argued previously, it is in any case extremely naive to gauge the impact of the Vatican’s teaching purely in terms of how it influences peoples’ sexual behaviour.  The Catholic Church (and other denominations) continue to administer a significant proportion of public and private health care provision across the world, and in particular in sub-saharan Africa.  Don’t expect them all to start supplying human rights based, comprehensive sexuality education.  And definitely don’t expect them to start supplying condoms, whether it is to all-comers, to people living with HIV, or to male sex workers.

 

 

The difference between bigotry and banter

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The right to talk crap

“John” was one of the callers to the Nicky Campbell Radio 5 live phone-in last Friday, which was all about freedom of speech, in the light of Paul Chambers’ unsuccessful appeal against his conviction for sending a menacing communication (the now infamous Twitter Joke Trial) and the arrest of Tory Councillor Gareth Compton for making a twitter comment about stoning Yasmin Alibhai-Brown.

John was appalled. “You can’t say anything” anymore, he complained. For instance, he said he was terrified to talk about the “islamification of this country” which is going ahead at a “frightening pace”.  As I listened, I wondered what he was scared of, since it didn’t seem like he was saying anything that would actually get him arrested.  It sounded to me like he was saying things that were ridiculous, wrong, and bigoted, and which he’d rightly get pilloried for.  But not arrested… unless he was planning to go on to incite violence.  And when he said that in his youth saying that sort of thing wasn’t a problem I thought to myself… that’s probably because there were more bigots around when he was young.

While we should rightly be worried about the police (and the courts) reaction to the humour of Paul Chambers and Gareth Compton, it’s also important to make sure people don’t confuse freedom of speech with freedom not to be told you’re talking a load of tosh.  Freedom of speech doesn’t mean everything everyone says is correct, and being told you’re full of shit, or that you’re not funny, or that you are funny, don’t constitute violations of free speech.

Freedom of tweet

A couple of days after the twit-storm over the twitter joke trial, a couple of UK newspapers treated us to a vile attack on a civil servant for giving details of her personal life and her differences of opinion with government policy, on twitter and on her blog (I won’t do the papers the service of providing a link but it should be easy enough to find for anyone who is interested).  It’s one more in a long line of unprovoked attacks from journalists and even elected politicians on people for doing not much more than nattering.  As with the twitter joke trial, the response was a huge show of support on twitter and on personal blogs for the person under attack.

The more I read this sort of frenzied attach, the more I get the impression that a lot of old-school journalists are really quite panicky about online networking and how it is transforming how people talk, how they consume and challenge the news.  It’s particularly disturbing when commentators feel it is more worthwhile to use their considerable reach to have a go at individuals for engaging in banter rather than to challenge misguided or bigoted opinions.  Banter and bigotry are both allowed, but I know which one I worry about more.