Social Science Research Council
INTRODUCTION
Since the beginning of the epidemic, HIV and AIDS interventions have been inscribed in a dual cultural framework. On the one hand, they fit within the traditional culture of public health with its prejudices and paradigms, its insistence on behaviours and on blaming victims, its preference for technical solutions and its fascination for ‘magic bullet’ approaches. On the other, these interventions can create an innovative culture that invents new rules in medicine and new roles for patients, disrupts the usual precautions and proposes unusual procedures, mobilizes the media on a massive scale and shifts legal frontiers. This combination of tradition and innovation makes the epidemic exceptional in the long history of public health – a history which can contribute to understanding the way HIV and AIDS are dealt with on the international as well as the local scale. Particularly relevant are comparisons with the reactions to and management of syphilis in Europe in the late 19th century and in Africa in the early 20th century. Interventions relating to crucial gender and sexual issues, in particular, combine the stigmatization of so-called risk groups with the transformation of norms and values. These gender and sexuality issues differ widely in Western and in developing countries, especially in Africa. In Western countries, where the epidemic initially affected men who have sex with men, interventions were rapidly dominated by both the epidemiological paradigm of risk and by the social mobilization of activists who were directly and personally affected by the disease. In developing countries, the epidemic often disproportionately affects women infected through heterosexual intercourse. Here, interventions have been made within a moral framework that opposes promiscuity and vulnerability, while activism has primarily been undertaken outside the context. The interpretative framework oscillates between assumptions of sexual promiscuity – supposedly specific to African cultures where multiple partnerships are taken to be common – and a less judgmental approach that insists on the vulnerability of women in terms of their socioeconomic positions and their exposure to sexual violence from men. The public health response therefore combined health education to change harmful behaviours and social empowerment to help women resist male domination. Women have thus been considered both endangering and endangered. The perception of women straddles that of gay men and drug users, who are stigmatized as being personally responsible for their disease, and hemophiliacs and children, who are seen as innocent victims. In this conception, women are simultaneously vulnerable to sexual abuse by men and potential transmitters of the virus, either as ‘prostitutes’ or as mothers. This epidemiological ambivalence and moral ambiguity have served to impede the development of effective prevention programmes for women. Resistance to the prescription and implementation of antiretroviral treatment regimes for women who have been raped is a tragic illustration of this peculiar gender configuration.
International policies to combat the epidemic also suffer from these tensions between normative and emancipatory discourses and practices. However, human rights and gender considerations have been included in early prevention plans to a greater extent than in responses to previous epidemics, often due to pressure by global activistsand, to a lesser degree, by local organizations. Yet global action is contradictory; UNAIDS has actively engaged in defending sexual rights, including the protection of women, while PEPFAR has operated in favour of traditional methods like abstinence which can contribute to the stigmatization of sexuality. At the same time, the financial involvement of Western countries through their governments, non-governmental organizations and international agencies has been significant, especially in terms of treatment provision, which not only has curative effects but can also increase positive social consequences by giving patients a form of dignity. Lisa Ann Richey describes an innovative manner of raising funds on a global scale which merges commercial and charitable benefits: the rock star Bono’s marketing strategy of selling products that are labeled ‘humanitarian’ has gained support not only from celebrities and the media but also from scientists and doctors. The price of this campaign, however, is the production of simplified and dramatized images of Africans -and particularly African women – that reinforce prejudices about the endemic misfortune of the continent and the powerlessness of female victims. Indeed, international aid policies have often tended to reproduce at the symbolic level the global inequalities they seek to remedy through their concrete actions.
It has long been clear that the same standards are not applicable in the North and in the South in terms of access to antiretroviral drugs. Not only are the prices of these medicines far beyond the economic capacities of most poor countries – especially given the number of patients to be treated on the African continent, for example – but the management of drug regimes often exceeds the professional competences and technical resources available in many health systems in the South. While efforts have been made to lower the cost of treatment and improve access, antiretroviral drug provision remains extremely unequal. In this context, the discovery of the efficacy of a protocol using a single dose product, nevirapine, was hailed by many public health specialists as a great step towards generalized prevention of mother-to-child transmission. Complex multitherapy clinical trials were conducted in rich countries, but this simplified and cheap treatment was intended for poor countries – or, rather, for poor patients in poor countries.
However, as Alton Philips shows, it was known from the outset that the therapy might have harmful consequences, the most likely and serious being the development of resistance to the whole antiretroviral family of nevirapine among all mothers who receive the drugs and the few children for whom prevention fails. While uncertainty and the urgent need for action can explain this ethical failure, this is only one episode in a long history of protecting children at the risk of endangering mothers’ lives. Women’s vulnerability here is iatrogenic – that is, provoked by medical intervention. Current policies are often the result of interactions and even confrontations between international actors, whether states or agencies, and national actors, including governments and activists. Many African countries, for example, have shown signs of ideological resistance to the reality of the epidemic, as well as to the interventions of foreign institutions. Claims to have invented antiretroviral drugs, such as MM1 in the Democratic Republic of Congo, Kemron in Kenya, Virodene in South Africa and
Therastim in the Côte d’Ivoire constitute a specific form of therapeutic nationalism. At the same time, some countries have demonstrated unexpected capacities to combat the epidemic. The most famous example is Brazil, which is often presented as a model of government collaboration with non-governmental organizations. However, as Ines Dourado et al. suggest, the Brazilian policy of generalized access to antiretroviral drugs requires a larger reform of the health system and social protection that aims towards equity, including for women. The Brazilian success story must therefore be put into context, since the country’s economic inequalities, which rank among the highest in the world, continue to have negative impacts on the results of its exemplary policy. This case study provides a useful reminder that the most effective – but also most difficult –intervention to prevent HIV transmission is the broad reduction of social inequalities, including gender inequalities.
Sexual violence is often – and relevantly – presented as the central issue in terms of women’s specific vulnerability to HIV infection. However, the question of what is meant by sexual violence from an epidemiological point of view remains. This is not merely a theoretical question, but one that is crucial in deciding the types of prevention measure to be implemented. Health specialists and policy makers have tended to focus on the most extreme forms of violence. Judy El-Bushra discusses this trend on the basis of available knowledge about situations of war, such as that in the Great Lakes area. She discovers that, contrary to general belief, the practice of gang rape committed by militia and soldiers probably does not account for the majority of infections in women. Rather, they can be attributed to ‘ordinary’ forms of sexual violence exerted by ordinary men, often civilians, in these conflict contexts. Many programmes ignore this complexity and focus only on violence directly related to war, thus neglecting many women in need of psychological support and medical assistance. This observation can be applied beyond the context of conflict, as the programmatic focus on rape, in particular in Africa, has led to the neglect of the effects of ‘everyday’ sexual violence. In South Africa, for instance, more women are infected by self-defined violent intercourse with their usual partner than by being raped by a stranger. Shifting our understanding of sexual violence from the ‘exceptional’ to the ‘ordinary’ is an important challenge for the culture of interventions.
The four chapters in this section demonstrate how gender and sexual issues, which must be taken into account in HIV and AIDS interventions, are deeply embedded in social determinants, logic and processes. The widespread representations of problems and their solutions – culturalizing and caricaturing issues; depicting women solely as victims; focusing on ‘magic bullet’ approaches; concentrating exclusively on access to drugs; emphasizing exceptional situations – are oversimplified. This has contributed to the avoidance of more complex and painful questions about the ubiquity of gendered and other social inequalities. It is important to recall this lesson, almost three decades after the beginning of the epidemic.
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