A short letter in the correspondence section of this week’s Lancet describes the difficulties faced by a campaign to promote HIV testing among school children in South Africa. The campaign is part of a broader push to get people to know their HIV status in South Africa, a country where 5.6 million people are HIV positive. The national campaign aims to get 15 million people tested by June 2011.
The letter describes the results of work in a rural district, during which 758 people aged under 21 received and HIV test over the course of 14 months, but none of the seven who tested HIV positive had been enrolled in care at the end of the period. It appears that efforts were made to ensure that those testing positive accessed care; however the authors suggest that even more needs to be done before testing, to ensure that people know and understand what it means and what to do in case of a positive result. Just testing people is not good enough.
They’re not wrong there.
This may just be an anecdote, but it is an anecdote I hear often. In the past few months someone I met during a programme evaluation died very shortly after: he knew he was HIV positive, but when he got sick he was turned away by several doctors, most probably because was homosexual. I’ve just been reviewing national programme data from another country which suggests that only 90% of people who get tested ever find out their results, and where the numbers of people newly placed on treatment is a fraction of the number testing positive. I’ve heard several accounts from antenatal clinics working on preventing mother-to-child transmission of HIV, losing track of HIV-positive pregnant women and not being able to give them the appropriate assistance as a result. As for sex workers, there are so many reports of mandatory testing that it sometimes seems like HIV prevention programmes around the world are doing it just for fun. This recently published article describes the atrocious rates of follow up for HIV positive sex workers in Senegal.
HIV testing has, for many years, been at the heart of the misjudged split between HIV prevention and HIV treatment efforts. Long before treatment was widely available, there were testing campaigns, based on the premise that people who know their HIV status are better motivated to adopt preventive behaviours. The key UNAIDS publication on testing, published in 1999 was called Knowledge is Power, and outlined the power of testing as a preventive intervention. And perhaps because testing was therefore seen to have an inherent value, lots of organisations have got involved. It has also been a major push from the major donors supporting HIV prevention. As well as testing being introduced in existing health facilities, a lot of energy has also been expended on specialist testing approaches such as mobile testing campaigns and setting up stand alone testing clinics, like the one pictured above which, when it was brand spanking new, was in marked contrast to the run-down hospital down the road.
The problem with this is that there isn’t that much evidence that HIV testing does make such a major contribution to prevention after all. There has been one randomised control trial of voluntary counselling and testing with HIV incidence as an outcome; and a systematic review of the impact of testing on sexual behaviour submitted to Cochrane in 1998 is still at protocol stage. The previous review, covering the period up to 1999, suggested the preventive benefit of HIV testing was clear among HIV positive people but among HIV negative people. Other analyses of the behavioural impact of testing suggest mixed evidence on the impact of testing on risky behaviours. It’s not a disaster: it’s just not particularly clear-cut, and it’s hard to tell why it is a useful approach in some situations but not others.
None of this is to say there’s anything wrong with HIV testing, as part of a comprehensive response to HIV. But unlike care and treatment, HIV testing is a clinical intervention that it is fairly easy for non-clinically specialised organisations to take on. Many organisations specialising in HIV prevention also provide testing. To be sure, people testing positive are referred to or advised to go for treatment, but once that referral has been made? Well then, the question of whether they get treatment or not becomes Somebody Else’s Problem. “But we do prevention, not treatment”, was the answer I got last time I asked an organisation if they followed up on the HIV-positive cases they referred out. Treatment outcomes for positive people just aren’t among the things that organisations with “prevention” funding get judged against.
If we want to make progress on HIV prevention – or any other critical public health issue for that matter – the Somebody Else’s Problem problem is going to have to be dealt with. These days in HIV prevention programming we talk about “combination prevention” which thankfully includes HIV treatment but also other issues such as reproductive and sexual health. Most organisations delivering services can’t, and won’t ever be able to deliver every single component of combination prevention, so to be effective they have to collaborate; to plan and deliver services together. Calling a testing or peer education programme “prevention” is no longer accurate because we know that just doing those things is never going to be enough. You can’t just say “somebody else will get the condoms, do the treatment, make sure people aren’t persecuted for their sexual behaviour” – it’s your problem as much as it is anyone else’s.
Recent research showing the huge impact of antiretroviral treatment on reducing onward transmission of HIV helps to further undermine the false division between prevention and treatment. Hopefully it will also sharpen minds about the need for a greater sense of responsibility toward the people that programmes are there to serve.
* The image is of the stand alone testing facility in Toamasina Madagascar, established in 2003.