/ 28 November 2007

Light within the chaos

It is time South Africans acknowledge that what can be done technically to prevent and treat HIV/Aids is being done. We won’t solve the crisis by simply improving the techniques, be it ABC campaigns, counselling, testing or treatment. They are tools that depend on the hand that guides them. Little more can be achieved without a change in society’s consciousness of how to live with HIV/Aids.

South Africa’s mechanistic response to HIV/Aids is a good starting point. In previous years the emphasis was on ”prevention”, which later shifted to treatment. The initial focus was on ”changing behaviour” but, when that did not seem to work, it switched to mitigating behaviour; for example, searching for effective microbicides. Faced with the spectre that nothing seemed to work, the general response has been: ”We need more human resources and investment in technical capability to solve the problem.”

Disconcerted by not finding a definitive way to prevent the spread of HIV, South Africa has slipped into the trap of creating a different problem — lack of resources and human capacity — for which there is a seemingly obvious answer. Confusing an explanation with a solution is one way to handle the stress of failure. But we delude ourselves.

HIV/Aids is a treatable illness. Each year clinicians learn more about the HI virus. Vast amounts of money flow into Africa to cover the costs of research and interventions. South Africa receives much of these funds, on top of its own resources that are stupendous compared with other African countries. And there is no shortage of expertise; witness the stream of reports on innovative strategies from clinics, NGOs and some provincial and district-level government departments. Conversely, national government departments are infamous for not spending funding and for finding reasons why they cannot do better.

South Africa has abundant resources but many are not seen, let alone used effectively. The mechanistic approach blinkers our vision. The appeal of male circumcision programmes and compulsory testing is a textbook example. Forget the justification on the basis of facts and science. It was an attempt to take into the wider world a model of ”evidence-based decision-making” — one used by (some) clinicians, for clinical assessments of illness, in clinical settings. Rigid, even naive, yet appealing amid the prevailing pessimism about the spread of HIV. Desperate times call for desperate measures and if people won’t change their behaviour then medical science has ways to make decisions for them.

Is this cause for despair? Not if we realise that South Africa is the weird case of Africa. Our situation is akin to beating a brick wall in the hope it will fall down and continuing to do so when it refuses to collapse. It is a peculiar approach.

Rather, realise that this wall is a creation of our collective imagination. The foundations are made of fear. Getting tested is frightening. The knowledge gained inspires fear as much as the thought of knowing. Irrespective of whether a test result is positive or negative, individuals know that life from then on cannot be the same. Decisions have to be made.

Dealing with the conflict of choice is the individual’s problem. More often than not the opportunity is lost. The desire to be truthful to oneself, to family and friends can be overwhelmed by anger at the affront of HIV to one’s sense of being. It is an affront felt by all. The result: many people remain locked in fearful silence.

Resting on this fear is the government’s, scientists’ and NGOs’ obsession with defining the problem. Government officials, stuck with the executive’s ”lunatic fringe” ideas, absolve themselves with exclamations of lack of capacity. Scientists spend more time on proofs of the problem and less on how research can be put to good use. NGOs create niches for themselves, proclaiming to serve society well by making little holes in the wall. And we wonder why people are sceptical about the advice of ”experts”.

Change the collective imagination and the wall will crumble. The dismissal of deputy minister of health Nozizwe Madlala-Routledge earlier this year sparked dismay; not because anything substantive happened to South Africa’s HIV/Aids interventions. The cause was that a flicker of light within the Health Ministry had been snuffed out. That light has been shining elsewhere.

Many people, still too few, voice what we all know: to live in fear is not a natural state of being. Grandparents, volunteers and professionals who care for children affected by HIV/Aids understand this best, because the children constantly remind them about what human nature really is. Soul City and Stepping Stones have been longstanding torchbearers, showing youth the choices available when negotiating the minefields of HIV, peer pressure and social norms that threaten fulfilment of sexual desire and adulthood.

There are clinics and clinicians who dispense with the standard protocols, change procedures and achieve success locally in preventing and treating HIV/Aids. Yes, they report on improved techniques to substantiate their achievements but only because this is easier and more acceptable to do than trying to explain the change in attitude which inspired those innovations.

The sad part is that they are presented as illustrations of what can be done rather than as common interventions. The hopeful part is that others listen, realise they are not alone and so gain the courage to do likewise.

All of which is to say: the situation in South Africa is chaotic. Chaos is what exists before the birth of a new paradigm. In South Africa we see this in the light cast on those interventions that at their core reflect despair and fear. We can choose otherwise.

Obed Qulo and Professor Tim Quinlan are, respectively, operations director and research director at the health economics and HIV/Aids research division at the University of KwaZulu-Natal. They write in their personal capacities