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SOCIAL AND BEHAVIOURAL SCIENCES - TRACK D
Closing Comments 29 June - 3 July, 1998

July 1, 1998 GENEVA. --- I would like to begin by thanking the Conference organisers, all those who made oral and poster presentations in Track D at the Conference, the Volunteers, and the rapporteur team who worked with me to prepare this report.

If we were to single out the most important new issue concerning the AIDS epidemic since the last international AIDS Conference, it would undoubtedly be the appearance of new and dramatically more effective anti-retroviral therapies and the possibility of a vaccine. This has had enormous implications for the papers presented in Track D. These medical developments do, however, present us with a painful paradox. The greater the advance in clinical research, the wider the gap between those who can afford the best treatment and those who can afford no treatment at all. This phenomenon is taking place both within and between countries and reminds us that we must never forget that individuals, regardless of their gender, sexuality, class, creed or social status, have basic human rights including the right to health. And as was pointed out in the opening ceremony, the emphasis should not be on delay and searching for the perfect solution. Instead, the priority should be on acting now to reduce the inequalities on which the epidemic feeds, and the injustices that AIDS creates.

The advent of new and more effective treatments creates new questions about behaviour change - not only in relation to the adoption of safer sexual and drug related practices, but also with respect to their maintenance over time. Has news of the new therapies made people less willing to practice safer sex and safer drug use for example? The evidence presented at the Conference was far from clear on this issue. Conflicting accounts were given about the effects of treatment advance on behaviour change - with some studies indicating increased risks, and others failing to do so. This is clearly a field where further research is urgently needed.

A related set of issues arises in relation to adherence. Levels of non-adherence to treatment drugs reported in Track D varied from 35% to 43%. Differences have been identified between adherent and 'non-adherent' individuals, with some studies attempting to define their psychological profiles. While this may be valuable, it should not be used as a way to decide who gets access to treatment nor should it detract from a fuller understanding of problems of increasingly complex treatment regimens. A number of studies reported during the Conference showed that behavioural interventions can, however, be effective in supporting people who are required to take complex combinations of drugs.

Throughout the Conference, there was much discussion of how poorer countries are disproportionately affected by the epidemic. Time and time again it has been shown that primary prevention remains the best and most effective means of controlling the epidemic, and this is particularly evident in poorer countries and in socially disadvantaged communities. This is one of the reasons why the social and behavioural sciences are so relevant to AIDS since they hold the potential to tell us what combination of factors work best in what circumstances, and with which groups.

Prevention programmes with young people presented at the Conference show that community-based approaches are being increasingly favoured, with youth involvement and the participation of other crucial actors. A 'combination prevention' approach (in the words of Peter Piot) is typically adopted in these programmes. This involves making multiple interventions in an environment supportive of change. There was further evidence that well designed and implemented programmes of sex education do not lead to an increase in sexual activity but provide the foundations for significant risk reduction.

Harm reduction interventions in injecting drug use populations are becoming possible even in the most difficult circumstances, and are seen as a key component of AIDS prevention efforts. For lasting effectiveness and in order to meet a diversity of needs, these programs must go beyond needle and syringe access to include counselling, social services, sexual risk reduction and access to drug treatment, particularly substitution programs such as methadone. The human rights of drug users must be respected especially in prison settings. More research is needed on the various legal and ethical issues in the work with injecting drug use populations, as well as on care programs for seropositive drug users. A wide range of posters addressed the issue of sexual risk behaviour associated with alcohol and other drug use, indicating the need for focused sexual risk reduction interventions for drug using environments and populations. A major gap in presentations was a failure to consider the social, political and cultural factors which have contributed to the rapid global spread of injecting drug use.

Prevention programs around sex work are increasingly seeking to meet the needs of clients as well as sex workers themselves. There is increasing emphasis on the empowerment of sex workers through peer education and other means. Beyond this, it is important to emphasize in general prevention messages that they are not responsible for the spread of STDs. The rights and dignity of sex workers should be asserted in public health policies and beyond. There continues to be a serious neglect of work with men who sell sex.

Programs oriented to gay and homosexually active men are under way in a number of countries in the developing world, with many hard won successes. These programs recognise that respect for the human rights of gay and homosexually active men is a pre-condition for success. Yet, in many countries that respect has yet to be received. Persecution and the illegality of homosexuality still undermine such prevention efforts. The gay communities of the West are facing new and diverse health promotion problems, but have increasing access to treatments and resources. Developing country NGOs working with gay and homosexually active men face the same problems as other social actors in resource poor communities.

As many prevention projects described during the Conference showed, prevention really works. Over the years, a wealth of knowledge has accumulated on which prevention strategies work best. Yet, there exist enormous gaps between this knowledge and the actions of governments. Controlling the epidemic requires us to bridge this gap in a timely manner. Barriers to this include lack of political will derived from economic, and/or pseudo-moral constraints and the desire to delay programs and interventions until a perfect prevention solution is found.

We also heard of facilitating factors that can shift governmental policies toward more adequate AIDS solutions, for example: democratisation processes in countries such as South Africa, or overwhelming epidemiological evidence that convinces governments that listening to the experts makes sense. In Track D, several sessions exemplified both obstacles and facilitating factors that shape AIDS prevention programs in different countries.

In most national health budgets, there is a tension between the proportion of resources devoted to prevention and care. This is reflected in the quality of care afforded to people with HIV/AIDS which differs dramatically between the resource rich North and the depleted South. Amidst evidence of a growing gap between rich and poor, there was some hopeful news as well. The session on community involvement in prevention and care began with an overview emphasising that there is now virtual consensus that community involvement is essential to effective responses not just as a tactic or strategy, but as an intervention in and of itself.

Examples and models of effective community involvement in prevention and care came from Senegal and Tanzania, and in PWA support from Thailand and Brazil. Perhaps the most hopeful news was a cross-over from Track B's session on Access to Care in Resource-Poor Societies. From Uganda, Burkina Faso, Thailand and India, there was evidence of community based care programmes increasing life expectancy and quality of life. These with the same approaches which proved so successful in the North from the mid-1980s - namely, improved diagnostics, prophylaxis, access to antibiotics and other treatments, and palliative care. A number of presenters shared costing data which demonstrated significant impact within weak medical infrastructures for about $20 per person per month for people entering the systems with advanced symptoms, to as low as $2 a month per person for maintenance of basic care.

One of the most striking developments since the last Conference was increased attention to gender and gender analysis. This was reflected not only in more sophisticated understandings of women's vulnerability but also in a session devoted exclusively to questions of male sexuality. We have also learned that increasing women's access to key resources in society, such as income, skills, education, and social support, can lead to a more equal balance of power. Sadly, this recognition has not as yet influenced the design and implementation of many prevention and care interventions. Moreover, there are very few examples of how we can change socio-cultural, economic, and political norms to increase women's access to critical resources.

Although numerous presentations were given on the female condom, it is clear that this still remains something of a 'boutique method' - an option available only to a few. While increasing the accessibility of this method, we must simultaneously encourage the development of other technologies to increase women's choice.

We learned at this Conference that funding, not science, is the barrier that impedes the development of a microbicidal product which could radically transform approaches to prevention. We also learned from a market survey of 4000 women in 11 countries worldwide that there is a high demand for an effective microbicide. What will it take to get the resources needed to support the development of this product, and by implication the protection of women, men and children from HIV and other sexually transmitted infections?

The continued lack of funding for microbicide research despite consumer demand is yet another example of what was called, during the Conference 'the paradox of effective consensus and absent action.' Bridging the gap between what we know and what we must do requires activism of sophisticated and nuanced proportions. As presentations throughout Track D made clear, such advocacy must be based on reliable information, carefully planned, focused and targeted. It might usefully exploit the opportunities provided by international human rights instruments which allow us to hold Nation States accountable for their actions or inaction. [There is much to be learned from the past successes of the international women's reproductive health, sex worker and gay rights movements.]

Throughout the planning of the Conference, human rights were seen as a pathway cutting across all tracks. And it is precisely human rights, including economic rights and the right to health that offer us the means to confront the complex challenges ahead of us. In the name of human dignity, for the welfare of future generations, and for the sake of those who live and have died from AIDS, we must set these principles as our primary goals.

I would like to end by referring to the way in which the Spanish philosopher Fernando Sabater once explained to his son why he devoted his own lifetime to the study of ethics. He said (and allow me to read it in my own language)

"Creo que toda ética digna de ese nombre parte de la vida y se propone reforzarla, hacerla más rica (...) Lo que me interesa no es si hay vida después de la muerte, sino que haya vida antes. Y que esa vida sea buena, no simple sobrevivencia o miedo constante a morir."

Or to put it another way,

"All ethics worthy of that name are based on life, and seek to reinforce and strengthen it. What interests me is not whether there is life after death, but that there should be life before it. And that life should be a good life, not one of mere survival or constant fear of death."

Thank you.

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