HIV in South Africa

Talking about the big thing

Corinne Squire

• Publisher: Routledge
• Year: 2007
• ISBN:
  9781134193936
• Edition: 1
• Topic: Medicine
• Subtopic: AIDS & HIV

The first book to look at the effect of HIV on the lives of people in South Africa

Author is well-known and well-respected in her field – involved in a ten year longitudinal study of people living with HIV in the UK

Looks at South Africa, which is leading the way in how to deal with the AIDS crisis in Africa

Uses narrative/discourse analysis – a popular contemporary form of analysis in social research

1 HIV in South Africa

Global, local and historical realities

When I was first tested in 1997 . . . I didn’t think anything, you know the problem was that, I just ignore it, ignore the point of HIV. And then we had that problem, we had the problem of, of us the people in South Africa . . . We took the HIV issue light and we compare it to . . . the countries like, like America . . . we didn’t compare it to in South Africa that HIV can be here you know. I took it light and I ignore it just like that, ‘No, this is not a truth that I’m HIV positive.’ I just ignore it, and the doctor didn’t give me the guidelines, how to live with HIV, I must do this and this.

Michael, Khayelitsha, June 2001

I want people to understand about AIDS – to be careful and respect AIDS. You can’t get Aids if you touch, hug, kiss, hold hands with someone who is infected.

Care for us and accept us – we are all human beings.

We are normal. We have hands. We have feet.

We can walk, we can talk, we have needs just like everyone else – don’t be afraid of us – we are all the same!

Nkosi Johnson, speaking at the 2000 International AIDS Conference, Durban, South Africa (Johnson, 2001)

I have said that the government will continue with its programme on this matter of HIV and AIDS and I have nothing more to add to it.

President Thabo Mbeki, in discussion following questions in the National Assembly, 21 October 2004, Cape Times, 22 October 2004

HIV in the world

In 2003, I walked into a pharmacy in Cape Town’s bustling train station and bought a bottle of herbal tonic called Africa’s Solution. It was not like any other remedy I’d seen. From street sellers, you could buy locally made tonics that claimed to have good effects on HIV; some of our interviewees had tried these. In pharmacies, you could buy herbal remedies, soberly packaged, advertising a wide range of healthful properties; some interviewees used these, too. Africa’s Solution was different. Red, green, black and gold, like a brightly coloured African flag, it promised the indigenous answer that President Mbeki and many others hoped for. It claimed to help ‘tiredness and fatigue . . . chronic chest, perspiration at night, swollen glands’, all possible symptoms of HIV. A picture of a whiskery African potato, the mainstay of health minister Manto Tshabalala-Msimang’s nutritional advice for people with HIV, adorned the label. Retailing at R39.95 a bottle – then nearly onetenth of the monthly disability allowance – few people living with HIV could afford Africa’s Solution, but many would try anyway. It had a pleasant, vegetably taste, and lasted two years in my fridge before fermenting.

In 2004, Africa’s Solution became famous. A Dutch-national nurse and her mother, Tine and Nelly van der Maas, promoted the use of the tonic alongside food supplements and fresh fruit and vegetables, as obviating the need for antiretrovirals. They continue to claim that their work in various South African provinces has shown the regime’s good effects in raising numbers of CD4 white blood cells and lowering viral load, the amount of HIV in the blood.¹ But no independent research has backed these claims. There is speculation that the van der Maases get a cut from the sales of Africa’s Solution. In 2005 two public figures, the Johannesburg DJ Fana Khaba in 2004 and Nosipho Bhengu (daughter of Ruth Bhenghu, a prominent ANC MP) died of AIDS while promoting the van der Maas regime (McGregor, 2006; Treatment Action Campaign, 2006). Khaba, indeed, abandoned antiretrovirals for the regime. One explanation for these and other HIV positive people’s turning to Africa’s Solution is that it may have some beneficial effects. A programme of nutrition-rich foods and supplements can improve health, at least initially. The van der Maas’s patients are often, like many other people in South Africa, malnourished, with multiple health problems. Moreover, antiretrovirals are not always easy medications to take, and adjusting to lifelong medication is difficult. But South Africa’s specific history of HIV, apartheid and postcolonialism is also what has given Africa’s Solution – a South African product, promoted by two commonsense women with no airs of medical expertise or NGO graces – its prominent, though contested, place.

This chapter examines theories of the beginning and spread of HIV in South Africa, and describes medical, governmental, activist and popular responses to it. Such situating of the epidemic is not a formal exercise. The extent, causes and history of HIV are continually talked about in South Africa, not just among politicians and intellectuals, but among ordinary people. You often hear people asking, ‘How did HIV get to be such an enormous problem here?’, expressing bewilderment in the face of this generalised and high-level epidemic, but also offering answers.

Many of the interviewees in our research project were deeply concerned about these issues. Not only must they live with a potentially fatal condition in a severely under-resourced context; it seemed they must share this circumstance with a high proportion of their fellow citizens. They must also imagine, not a post-apartheid national future of education and development, ‘a better life for all’, as the 1994 election slogan had it, but a future of illness, bereavement and social decline. Such experiences are hard to live with (Odets, 1995); they impel you to try to understand them. For South Africans affected by HIV – that is, everyone in the country – talking about the ‘big thing’ does not, therefore, simply involve personal concerns, but also considerations of larger issues. Such wide-ranging talk helps build theories of the global as well as local realities of HIV – theories that can help people in their efforts to live with the virus.

The fastest-growing HIV epidemics in the world are currently in Eastern Europe and Asia (UNAIDS, 2006), but prevalence in these epidemics does not reach southern African levels. India now has more cases of HIV than South Africa; again, the virus’s prevalence in southern Africa is much greater. In some west and central African countries, HIV prevalence seems fairly stable at between 5 per cent and 10 per cent (UNAIDS, 2006). In a few east and central African countries such as Uganda and Tanzania, prevalence has fallen, with HIV stabilising at relatively low levels (Iliffe, 2006; Lutambi, 2005). In southern African countries, however, while new infections are plateauing, prevalence may not peak until around 2013 (Johnson and Dorrington, 2006; Lutambi, 2005). In these countries, HIV also disproportionately affects younger people (MacPhail et al., 2002), as opposed to Tanzania for instance where HIV prevalence is more evenly distributed across age groups (Favot et al., 1997). Although South Africa spends more than most middle-income nations on health as a percentage of gross domestic product – 5 per cent in 1990, 8 per cent in 2003 – HIV also spread faster there than in low-income Tanzania. Botswana, Swaziland, Lesotho and Zimbabwe have higher HIV prevalences than South Africa, and a similar chronological profile of an epidemic that rapidly expanded in the 1990s, and that now affects the whole nation; but their epidemics involve lower absolute numbers.²

Achieving democracy after a 50-year struggle, only to face a new national struggle that must be conducted on the very different grounds of medicine and social relationships, also puts South Africa in a unique position.³ The rest of this chapter tries to address debates about the South African epidemic through examining, first, explanations of how the virus arose and how it spread in Africa; and second, South African responses to HIV.

Explaining the pandemic

Explanations of the South African epidemic take three forms. First, there are widely accepted, research-derived forms, as presented by international organisations, medical authorities and NGOs; second, some popularised, implicitly racist variants; and third, explanations that oppose this second type, and that have developed in some high HIV-prevalence areas. I shall draw briefly on our 2001–4 interviews to illustrate how explanations of the epidemic appear within people’s accounts of HIV and can affect their ways of living with the virus.

The accepted chronology of the pandemic begins in 1981, when the US Centers for Disease Control published the first reports of unusually high incidences of rare kinds of pneumonia, skin cancer and cytomegalovirus infection – all pointing to problems in immune system functioning – among gay men in California and New York (Friedman et al., 1981). This ‘Gay Related Immune Deficiency Syndrome’ or ‘GRIDS’ was renamed ‘AIDS’ the next year, and the HIV virus underlying the symptoms isolated in 1983. ⁴ However, it is probable that HIV has a much longer and more dispersed existence in humans, involving long-term low levels of infection. HIV has been isolated from a 1959 plasma sample, but may have been around in humans since the 1930s within Africa, moving to the US and then Haiti in the late 1970s.⁵ It is thought to derive from west and west-central African monkey retroviruses that crossed species and hybridised in chimpanzees, forming Simian Immunodeficiency Virus, SIV. This virus was then transmitted to other chimps and other species, notably humans (Keele et al., 2006). Such interspecies transmission could have happened through blood-to- blood transmission during hunting – much as earlier versions of the virus may have moved from monkeys to chimps. Many viruses, bacteria and other disease-causing entities cross species – most notably at present, avian flu. Some, such as BSE and salmonella, do so through meat consumption. Other monkey viruses are also found in humans where monkeys are eaten.

When we encounter nonhuman viruses, we are usually unaffected, or we fight them off. Occasionally, however, SIV would have mutated in humans into a more resistant form – HIV. Supporting this account, contemporary HIV and related simian viruses have many strains and high mutation rates (Goulder and Watkins, 2004) – again, like many other disease-causing entities such as flu viruses.

Why do the origins of HIV matter so much for the ways in which people now live with it? In the Introduction, I described the ‘epidemic of signification’ (Treichler, 1988) that has consistently surrounded the virus. This ‘epidemic’ has also taken in HIV’s. African beginning, which is often discussed in the west in ways that repeat colonial mythologies of the animalistic ‘African’ mentioned in the Introduction (Chirimuuta and Chirimuuta, 1989).⁶ In such mythological accounts, there is a liminal place in ‘the heart of Africa’ where boundaries between humans, and between humans and animals, break down. Responding to these racist constructions, oppositional theories of HIV’s origin have often developed in Haiti, for instance, as well as in South Africa. Some such theories, like the one described at the beginning of this chapter by Michael, the pseudonym of one of our interviewees, identify HIV with western promiscuity, intravenous drug use and male homosexuality. Similarly, in Paul Farmer’s study of HIV and TB in rural Haiti, people reported HIV’s place of origin as the US or the USinfluenced city (1999: 161). Other oppositional theories ascribe HIV to a CIA programme of biological warfare against Africa, perhaps performed through vaccinations. Where, as in many places in the developing world, medical interventions focus largely on childhood immunisation, to suspect such a connection makes some sense. Immunisations’ links to other health problems are indeed often a public concern, as in western debates over the relation between the MMR vaccination and autism, or recent fears in northern Nigeria that polio vaccine contained either HIV or an anti-fertility agent (World Health Organisation, 2004). Developing-world countries also have a long history of being the subjects of unethical medical experimentation; this shaped many Haitians’ initial understandings of HIV (Farmer, 1999: 164). The 40-year Tuskegee experiment, beginning in 1932 and involving 399 African–American men deliberately not told of or treated for their syphilis diagnosis (Jones, 1993) is often cited in such accounts to emblematise western science’s racism. HIV medication and vaccine trials, conducted in situations where resource shortages compromise the meaning of ‘consent’, often seem to be engaged in similarly unethical endeavours. Such trials frequently, for example, involve placebos (Milford et al., 2006; see also Abdool Karim, 1998) – a procedure successfully fought in western ARV research by activists in the early 1990s, and in developing-world mother to child HIV transmission (MTCT) prevention treatment research in the late 1990s. Developing countries are also concerned about pharmaceutical companies’ power, in situations of low government provision and regulation. More broadly, racialised economic and social disadvantage certainly play a part in the South African HIV epidemic, as they do in high HIV-prevalence urban African American communities (Lown et al., 1993), and in Haiti (Farmer, 1999). In South Africa, moreover, HIV raises for many the memory of apartheid-era plans for biological weapons (Robins, 2004).

Another oppositional account of the HIV epidemic sees the virus as fairly harmless, or as relatively low in prevalence – a position sometimes supported by contradictory prevalence figures like those explored in the Introduction. In this account, HIV is said to operate as a western pretext for expanding pharmaceutical markets, with ARVs the toxic agents of postcolonial medicalisation and economic subjugation. The causes of ‘HIV’ symptoms are said to be poverty and simpler, less profitable diseases. From this perspective, HIV may also be viewed as a western excuse for reducing Africa’s population through condomisation. WHO and other international contraceptive campaigns, the developed-world discourse of developingworld overpopulation, and western pathologisations of ‘African’ sexualities can render such an account plausible.⁷ Moreover, nonwhite South Africans have already experienced apartheid programmes of sexualised as well as racialised control.

Such dismissals of HIV as a western demonisation of ‘Africa’ and the sexuality projected onto it, help explain why in the 1990s, Michael and his friends, who knew the conventional medical story of HIV, ‘took it light’ and continued, as Michael says, with what they knew was supposed to be ‘unsafe’ sex, despite positive diagnoses:

Michael: My sister she told me ‘this {diagnosis} can’t be like that, there’s no such thing’. . . . I told my family that I’m HIV they ignore it, which means there’s no such thing . . . I just continue with my life doing the ordinary things that I’ve done like I was just around you know, fooling around, busy with girlfriends you know, and all those, so I was just doing the same things. The point is I didn’t condomise because I nearly forgot the point that I’m HIV positive, there’s no such thing ok.

HIV’s spread in southern Africa has also generated competing explanations. The accepted, evidence-based account cites a combination of factors. In the later part of the twentieth century, HIV may have mutated into more resistant and infective forms. Sexual transmission increased through travel and voluntary and forced migration within and across African countries in situations of labour pressure and armed conflict, and in conditions of poverty and ill-health which themselves derive from earlier histories of slavery and colonialism (Barnett and Whiteside, 2006: 139ff.). Increased urbanisation and modernisation changed the organisation of families and sexual relationships. Untreated, even minor sexually transmitted infections (STIs) increased vulnerability. Growing alcohol and drug use also enhanced vulnerability (Morojele et al., 2006). Some infections may have arisen from needle reuse and transfusion. Condoms’ social and personal unacceptability (Bermudez Ribiero de la Cruz, 2004) and association with sex work (Iliffe, 2006: 134); their continuing shortage; lack of HIV education; lack of social power that would make that education effective, particularly for women; and other, strongly competing economic and health priorities, also contributed to the virus’s spread. In addition, the long, at first unknown African existence of the virus, itself enabled its extensive spread (Iliffe, 2006).

Women’s, particularly younger women’s, disproportionate infection rates in South African (MacPhail et al., 2002) and other African contexts are generally explained through the physiological factor of easier transmission during heterosexual intercourse and a range of social factors, including women starting sexual activity younger, having sexual relationships with older men whose longer sexual histories give them more likelihood of infection, and marriage also exposing women to older men with whom they are unlikely to practice safer sex (Clark, 2004). Sexual abuse, domestic violence and women’s lack of power to negotiate safer sex also play a part, and contribute to the disproportionate infections of young women. Sexual abuse is indisputably frequent in South Africa (Jewkes and Abrahams, 2002) and may be seen as a normal part of ‘love’ relationships by some (Outwater et al., 2005). South African research, including our own, frequently finds that women who ask for condoms to be used are accused of infidelity, beaten, verbally abused and losing homes and/or economic support (Morrell et al., 2002).

Women are not just ‘victims’ in the epidemic, however, but active decision-makers. Some young women express pride in their resourcefulness in obtaining what they need from boyfriends with cars, who serve as the ‘Minister for Transport’ and boyfriends who help with school fees, ‘Ministers for Education’ (Morrell et al., 2002; Selikow et al., 2002). Such arrangements may mean having unsafe sex if that is what these ‘ministers’ want. Others develop strategies to avoid the issues of condoms and HIV status, like Andiswa, one of our interviewees, who went to stay in her sister’s house, where she could not have sex with her boyfriend, but where she could still claim his financial support for their child.⁸ Women as well as men may offset HIV risk against their desire for children; in South Africa this seems particularly the case in rural areas (Morrell et al. 2002). Women may endorse their boyfriends’ equations of masculinity with many girlfriends, their dislike of condoms, their elisions of love, trust, health and ‘flesh to flesh’ or ‘skin to skin’ sex – all of which are especially dangerous for women – and may also endorse boyfriends’ commitment to sex as the best and only free pleasure available (Morrell et al., 2002). The pleasures of sexuality, for women as well as men, are notoriously discounted in many developing-world condom programmes (Gysels et al. 2005; Matthews et al., 2006) that focus on ‘safe’ and ignore ‘sex’. This is especially true for younger people, for whom condoms can seem just another one of the older generation’s tools for repressing their children’s sexualities (Campbell et al., 2005). At the same time many men are ready to reconceptualise masculinity, religiously or politically – as some of our interviewees did – or more specifically, around concepts of maturity, responsibility and fatherhood. Men’s groups and education programmes for youth in schools often now try to pursue such reformulations of masculinity. Men are also often ambivalent about their resistance to ‘safety’. In South Africa the Lotto slogan ‘tata ma chance’ (‘take my chance’), used by young men to justify their multiple unsafe sex experiences, causes some of them considerable anxiety and conflict (Selikow et al., 2002; see also Baylies and Bujra, 2001, Ouzgane and Morrell, 2005).

Having the power to ‘negotiate’ condom use is thus a complex issue. It is, too, only part of a broader gendered picture that includes non-HIV-related physical and sexual violence against women, and women’s lesser access to education and employment, all of which may lessen their power within sexual relationships. Women who have experienced sexual and physical violence – including those recently arrived in South Africa as forced migrants from conflict zones – may have ongoing difficulties from these experiences that limit their ability to address HIV transmission or being HIV positive.⁹ In high unemployment economies, women are especially likely to be forced or induced into unsafe sex work or transactional sex. They have fewer economic options than men (Ndingaye, 2005; Selikow e...