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SA Update

· Roddy Bray's Story-Letters from Southern Africa ·

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HIV/AIDS in South Africa (II)

Three years ago today I published the first SA Update - to provide a regular newsletter to those I have met through my work in tourism with informed comment on this part of the world - in a sense a continuation of my guiding, sometimes serious, sometimes fun.

The theme I chose for that first newsletter in December '99 was not one a salesman would pick to advertise the country. Perhaps this was why, in part, it was receiving remarkably little coverage and discussion within South Africa at the time. But I could not escape it, because my guests were beginning to ask questions and it was obvious to me that here loomed on the horizon of Southern Africa a challenge as great and serious as any faced by this much-tested country.

I am of course speaking of HIV/ AIDS. Much has happened since '99 and this is a topic that always comes up on tours, so it is right for me to re-visit this subject now, on World AIDS day, the 21st anniversary of the first rumours of a strange disease in San Francisco. What we have seen since that first newsletter are, firstly, realisation of the vast magnitude of HIV, denial and the power of stigma, the provision of drugs, the failure of political leadership and the emerging response of business and civil society. These are key issues in the fight against HIV in South Africa, so let me discuss them - I will try to be brief!

In '99 I wrote that 10% of the population of South Africa is HIV+, and most commentators now suggest twice this figure. Average life expectancy here has fallen from over 60 to 38. The only accurate statistics we have for the spread of HIV is from antenatal clinics. Around Cape Town 8.6% of pregnant women are HIV+, but this is by far the lowest in the country. Most provinces are above 25%, and KwaZulu and the Free State are over 30%. The incidence of infection is concentrated among blacks aged 18 - 40 and is most prevalent on the northern borders. Incidence in non-black communities remains very low.

These statistics have huge shock value. They are very uncomfortable. You begin to consider the possible effects on society - health and other government services, businesses, communities, politics. Then you imagine individual consequences, the real effects on everyday people: families, employers, colleagues and neighbours. Perhaps it only truly hits home when you know somebody directly affected by AIDS: an orphan, a widow, someone at work, someone in your community.

Reasons for the extraordinary spread of HIV include the fact that you do not see the effects of the disease for a long time. For one thing the incubation period is such that we are only now beginning to see a rapid rise in sickness, the number of funerals, the demand for coffins and a boom in new funeral companies. Until now, people may have heard about AIDS, but they could not see it. Their lovers appeared healthy, so what could there be to worry about? Life has enough pressures as it is, without worrying about something you cannot see, and may affect you in ten years.

The 'invisibility' of HIV makes it easy to deny, especially in a context of considerable stigma. HIV is sexually transmitted - all the education emphasises that. And in African society the shame of sexual disease is such that people will not admit to it, especially HIV, and they likewise try to protect relatives and friends. In one widely reported incident a brave woman in a rural area of northern South Africa was stoned to death after confessing her HIV status. Unfortunately, proposing the use of a condom is taken to imply HIV status, so people are reluctant do so. Since a medical record will reflect that a person died of TB, pneumonia etc. denial can continue even after death.

We are still in a situation where only the very brave admit to HIV. Several leading persons have died apparently of AIDS but so far none have been open about it, and media questions are strongly rebuffed. We have had no equivalent of Rock Hudson or Freddy Mercury who will break the stigma. One person who did speak out was a boy called Nkosi Johnson. His white adopted mother encouraged him to be open about his disease and the efficacy of treatment and he spoke powerfully at the World AIDS conference in Durban in 2008. He lived until eleven. Although he became well known the controversy of whether his adopted mother did the right thing rages on. President Mbeki seemed very uncomfortable and walked out during his speech. In the last year Nelson Mandela has taken on a leadership role and praised the courage of this small boy and spoken out about incidence of AIDS in his own family. Desmond Tutu has also spoken frankly and no doubt the voice of these elder statesmen will help.

The lack of political leadership in the current administration has baffled many. There definitely are people at local and national level that care very much and it appears that government has developed focus and commitment in recent months, although the President remains silent and aloof. Until the middle of 2008 there was an exhausting weave of denial, complication, controversy and inaction. There have been African leaders, such as Museveni in Uganda who have spoken openly about sex and HIV. But that has not happened here. Why? My guess is that the shame and stigma of the disease have made denial and dispute easier options. Leaders in developing countries (including, but not limited to South Africa) seem to take it as a slight on their national or racial character if people raise the question of sexually transmitted diseases, especially AIDS. Denial is a response of proud leaders to a situation that implies, to them, a perception of baseness or degeneracy of character. The upshot is that the government has not provided clear leadership on HIV and AIDS, nor has it rolled out treatment programmes to stop transmission of HIV from mother to child, nor treatments to keep healthy people living with HIV.

Meanwhile, amidst the denial and confusion the disease has spread. Now it is everyone's issue. Imagine you employ a domestic worker once a week… and she slowly becomes weaker and more depressed. She won't tell you the cause, but you guess it is AIDS. With increasing frequency she does not to arrive at work, either because she is too sick or she needs to attend a funeral. Do you sack her and find someone else? Do you lay her off and keep paying her? Do you try to find out more and become involved with supporting her family? Do you employ a second person, but aren't they also likely to soon become sick?

This is a situation faced by middle class people across the country. But, of course, managers and employers throughout the civil service and business face such dilemmas on a much greater scale, and they are also aware of their legal obligations, which nowadays are weighted in favour of the employee. Big businesses have made studies and realised that it is cheaper for them to treat their HIV+ workers with drugs to keep employees healthy for longer than to lose productivity and staff. So the big mining group Anglo-American is paying over $42 million per year to treat their HIV+ staff with anti-retroviral 'triple therapy'. Coca-Cola is now providing anti-retroviral drugs to 44% of their workers; the spouses and children of employees are also entitled. Old Mutual insurance and most other big companies have their own schemes.

What then of civil society? There are many aspects to HIV/ AIDS that must urgently be addressed: education, policy, treatment, and all manner of care for sufferers, their families and orphans. Around these many issues new groups have emerged in recent years. The most high profile is the TAC (the Treatment Action Campaign) that is reminiscent of an anti-apartheid pressure group. They have, with great success, repeatedly taken the government to court to force it to become active in the provision of drugs at state hospitals. The 'LoveLife' campaign tries to educate 12 to 17 year olds through provocative (and controversial) billboards with slogans like 'Too Smart for Just Any Body'. They have an AIDS help line that receives over 40,000 calls a month.

Other groups, including religious organisations, tend to focus upon welfare. AIDS creates orphans - some estimates are that South Africa will have 3 million orphans due to AIDS. Many of these are also born HIV+. Religious groups and some charities have responded by creating hospices for children including the 'Cotlands Bay Sanctuary' in Johannesburg and Beautiful Gate in Cape Town. But as the TAC succeeds in forcing government to supply drugs to block the transmission of HIV from mothers to children (principally through the drug Nevirapine) there will be a shift from children with HIV requiring health care, to healthy children that are orphaned. Obviously it is neither desirable nor possible to build institutions for all these children, so other groups have merged, many of them community based, that are providing support for those who care for orphans and for child-headed households.

In the last year we have seen an upsurge in attention given to the support of such organisations. The media is now reporting AIDS stories all the time (in dramatic contrast to three years ago). Most radio and TV stations have scheduled discussion programmes, and websites like www.redribbon.co.za are providing information. Universities, such as the University of Cape Town (UCT), have established units for AIDS research. They are involved in programmes such as UCT's Memory Box Project, where people living with AIDS can discuss and write about their lives. There have also been workshops for children to express their experience of AIDS in family and community.

Businesses such as supermarkets and banks have become involved in campaigns to raise funds and material support for AIDS organisations. It is fair to say that throughout the country and in every sector of society, members of the public are involved in addressing AIDS. In a sense, it is the very lack of political leadership around the issue that has forced business and community leaders to step-in and address the epidemic. This mobilisation is a huge improvement upon the situation of three years ago, when the profile of the disease was so low.

The tragedy, of course, is that a strong response by civil society, business and government did not develop ten years ago. Then the message may have spread faster than the disease. But it did not. Perhaps this is the major lesson about HIV that South Africa can share with the world, because we are in the vanguard of an epidemic that will be growing in other countries when we are passed the worst. Eastern Europe has a growing problem and half a million will die of AIDS in Russia by 2010. Indications are that India and China face a major epidemic, but their governments are not releasing accurate statistics nor facing up to the reality of the disease.

Much has happened in the last 3 years with HIV/ AIDS in South Africa: terrible mistakes and tremendous courage, apathy, denial and bravery have been mixed up to present a complex picture. On this, as with so many other issues, the South African experience is extreme and becomes a lesson for all.



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