Rapporteur's Report: Track D -- Social Science
Track D -- Social Science
As Paula Treichler pointed out during the conference, to theorise without taking action is to daydream, but to take action without theory is to run the risk of finding ourselves in the middle of a nightmare! The challenge for social research lies in developing sensible and useful explanations that guide what must be done in the face of appalling global inequality and adversity. Contrary to popular belief, social scientific understanding is neither commonsense nor self-indulgent obfuscation. Rather, it triggers the asking of critical questions about what guides the development and evaluation of programmes which, as Roy Anderson noted in his plenary address on Tuesday, help us understand what really works in HIV prevention and care.
Priciples for success
Throughout the conference, we learned of the need to act early, to engage people and communities on their own terms, to offer multi-level menu-based programmes and interventions, and to plan for sustainability.
With respect to young people, for example, the importance of recognising them as sexually active was highlighted in study after study. Research from Yugoslavia, Cote d'Ivoire, Peru and Mexico emphasised young people's authentic sexual cultures in each country. Sex is clearly meaningful for young people. Yet, young people's views of sexual activity differ. Studies in South Africa highlighted important differences in risk perception between young women and men: the former seeing themselves as vulnerable to infection, the latter regarding their risk as low. Studies of same sex activity such as one conducted among university students in Chennai, India, suggest that one in six men have some homosexual experience. Together with studies highlighting the special difficulties faced by gay and lesbian teenagers in the USA, the UK and in Brazil, such research cautions strongly against the tendency to view young people as homogeneous or uniformly heterosexual.
The power of peer-to-peer communication and well-supported programmes of peer education was highlighted in work from Barbados, Guyana, the USA, South Africa and Ghana, and the importance of working within clear policy frameworks such as those offered by the UN Convention on the Rights of the Child, the Ottawa Charter, and Human Rights legislation was highlighted in numerous sessions.
Despite little attention being given to injecting drug use at the conference, this phenomenon is spreading throughout Africa. Africa is increasingly being used for the trafficking of heroin and cocaine from producer countries to drug markets in Europe and North America. Where drug trafficking occurs, drug injecting follows. In a study from Nigeria, 20% of 400 illicit drug users interviewed in Lagos had a history of drug injection. But at the moment, prevalence has not reached the critical 10% threshold.
Injecting drug use is a major problem in Mauritius, and there is increasing drug injection in Kenya and South Africa. Effective programmes include the provision of community-based outreach, HIV prevention education, access to sterile injecting equipment, drug dependence treatment (including methadone and buprenorphine), and voluntary counselling and testing. Such measures have been effective in reversing the epidemic among drug injectors in New York (where HIV seroprevalence fell from 51% in 1990 to 29% in 1997), and in contributing to a declining epidemic in Santos, Brazil (falling from 63% in 1991 to 43% in 1997).
Contrary to public perceptions, a number of studies demonstrated that injecting drug users, particularly those who are HIV positive, have taken a responsible role in trying to control the epidemic, by changing their drug and sexual behaviours. And experience from these countries demonstrates the importance of acting early, particularly in the developing world.
A substantial number of presentations highlighted programmes developed by, and for, people living with HIV and AIDS. This and the active presence of people living with HIV and AIDS at this conference acts as an inspiration for us all to continue our work in fighting the epidemic. While some people might find this exceptional, time and again World AIDS Conferences demonstrate that true 'partnerships' involve all infected and affected people.
Successful programmes among diverse groups of sex workers highlighted peer-based approaches and outreach. Appraisal studies in Russia and Hungary, and ongoing work in Germany and Morocco highlighted the vulnerability of female and male sex workers in contexts where sex work is illegal, of ambiguous status or where efforts have not been made to create a safe environment. Additional reports from Bangladesh, India and South Africa on male sex workers suggest that this is a population we can no longer afford to neglect.
Among gay and other homosexually active men, the importance of the careful local monitoring of sexua practice was emphasised, with research revealing the absence of clear and universal trends. Comparative work in London, Sydney/Melbourne and Vancouver, for example, suggests no clear-cut relationship between treatment optimism and unprotected anal sex with casual or occasional partners. Evidence does, however, continue to accumulate about the risks in oral sex, and those faced by both younger and (importantly) older gay men in relationships. We need for the continual updating of prevention messages for these groups we simply cannot afford to assume that the approaches that have worked in the past will work in the future.
There were markedly fewer presentations on gay and homosexually active men at this conference, even though epidemics related to male-to-male transmission of HIV are by no means over in the developed world. There was, however, an encouraging increase in papers from developing countries on men who have sex with men, including regional reviews of Latin America and the Caribbean, and papers from Africa, South Asia, South-east Asia, the Pacific, Eastern Europe and the Mediterranean. While excellent interventions for gay men and other homosexually or bisexually active men were reported, there was a strong sense that less than optimal global sharing of good prevention practice among these populations of men was slowing progress. There is a real opportunity to ensure that still-growing MSM epidemics in the developing world never repeat the experience of Western gay communities.
New and emergent concerns
I now want though to highlight some new and emergent concerns, as well as some conspicuous absences in social research to date.
First, it is important to emphasise we are in for a long haul. We heard at this conference of new and growing anxieties among minority communities in the USA about infection through everyday contact. People talked of individuals in Europe and North America beginning to think that HIV and AIDS are less important now that HAART is available. And we have heard of increased unsafe sex among sub-sets of gay men in Holland, Australia, the USA and the UK. It is vital, therefore, to maximise our investment in HIV prevention. But it was good to hear about innovative prevention approaches such as public service announcements in the Philippines; peer education with barbers in Tamil Nadu, India; work in private pharmacies in Bamako, Mali, and work by Buddhist monks in Cambodia.
The importance of social inequality
If there was one key issue in Track D presentations, it was that social and economic inequality shapes the epidemic in different countries in different ways, and affects individual and community responses. Speakers in the Monday symposium on the evolution and impact of the science of HIV/AIDS, pointed to growing research emphases on the combined effects of poverty and economic exploitation, gender, sexual oppression, racism and social exclusion in creating a 'structural violence' that determines the social vulnerability of groups and individuals.
One of the most heated debates, for example, focused on whether or not structural adjustment fuels the AIDS epidemic, and one paper from Zimbabwe linked increased poverty and reduced access to health services to structural adjustment policies.
Questions about poverty and scarce resources provided a backdrop for many discussions on economic issues. For example, mother-to-child transmission was the subject of a number of cost-effectiveness studies. In all countries, treating women known to be positive is not only cost-effective, but also averts other care costs. In a study from Mwanza, Tanzania it was demonstrated that costs associated with an AIDS death, utilization of health services and sale of property by affected households were 2 to 3 times higher than those for deaths from other causes-a difference that is largely explained by duration of illness. A Rwandan study estimated cost of care in that country, but demonstrated that little publicly funded care reaches the poorest of the poor.
Given the scale of the epidemic, particularly in southern Africa, economic impact studies were surprisingly uncommon. One Thai study showed a dramatic impact at the household level: affected households experienced an income drop of almost 70% and consumption dropped by more than 40%. In short, presentations documented clear links between poverty and AIDS, in which the epidemic impacts most heavily upon the poorest sectors of society, and produces increasing poverty in its wake and the increasing threat of social disintegration.
It is perhaps not surprising that the single most contentious issue of the conference, both papers and on the streets of Durban this week, focused on access to care and treatment. Two points require special mention: first, the role of community mobilization in changing the actions of the pharmaceutical sector; second, the importance of creating an international political/legal consensus to support differential pricing.
While the importance of vaccines in prevention is not contentious, but the role of social research in relation to vaccine trials remains at issue. Among other issues, social research is needed to monitor the impact and trialing of vaccines on communities, as well as individual trial participants. Why is it that social research has to beg for a place at the vaccines table?
Throughout the conference a number of speakers argued for a better understanding of gender and sexuality as they relate to HIV and AIDS, summarised on this slide:
i. the culture of silence that
ii. forces that dictate that 'good' women should be ignorant about sex
iii. traditional norms of virginity which make it difficult for women to seek information about sex
iv. women's economic dependency on men
v. ideologies of motherhood and
vi. male violence against women
The same forces that render women susceptible to HIV and AIDS also make men more vulnerable. In particular, dominant norms of masculinity encourage men to:
i. appear knowledgeable and experienced
even when they are not
ii. seek multiple partners
iii. exercise sexual domination over women and homophobic oppression over other men and
iv. fail to seek assistance in times of need or stress in the belief that such action is not 'manly'
We need programmes to transform gender relations and free women and men from destructive gender and sexual norms. As Geeta Rao Gupta put it:
'Gender roles that disempower women and give men a false sense of power are killing our young,
and our women and men in their most productive years this must change. That is the message
that must be communicated without any caveats, ifs or buts.'
This of course is one reason why men and masculinity are to be the focus of this year's World AIDS Campaign.
Stigma and discrimination
It is increasingly evident that even in contexts where AIDS is common, people remain very afraid to reveal their serostatus. This is one of the reasons why some HIV positive men continue not to use condoms, and some HIV positive women continue to breast feed. Case studies and testimonies from Ghana, Uganda, Malawi, Zambia, Zimbabwe and India described HIV and AIDS-related stigma and its consequences. For women, the effects of AIDS-related stigma may be particularly severe. There were reports from India and Uganda of relatives forcing women to leave their marital home after the death of a husband from AIDS, for example, and of health care workers' own fears affecting the quality of support and care they provide.
AIDS's links to homophobia and homophobic violence were highlighted in a number of presentations. As a result, it has taken a long time for the real nature of the epidemic throughout much of Latin America to be recognised. In the intervening time, countless thousands of new infections have taken place. As one poster from Posithivos in Mexico put it: 'AIDS Kills, So Does Homophobia'.
Some outstanding issues
I want to conclude by highlighting some of the research issues that it might be useful for social science to address before Barcelona. They include:
Rapporteur, Track D
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