Issues Paper No. 14APPROACHING THE HIV EPIDEMIC TABLE OF CONTENTS Introduction The HIV Epidemic comes to people's attention through the language of its texts and its spokespersons. The way it is brought to people's attention will be critical determinant of how they will respond to it. Currently, the discourse is based on metaphors of epicentres of spread identified as core transmitter groups. These are metaphors of distancing which encourage blame and denial. There are, however within affected communities, new discourses emerging of inclusion, empowerment and processes and of the complexity of the reality of the epidemic. These discourses are associated with a new way of responding to the epidemic described here as one of community mobilization.
"We are not prostitutes. It has nothing to do with
us."
Determining how best to approach this epidemic is neither an idle nor an academic exercise. At stake are people's lives and well-being and the capacity of communities, businesses and economies to continue to function. Some people are more likely to come to unsafe contact with an infected person. If they alone are targeted as transmitters or as epicentres of spread, others fail to understand that everyone must change in the face of the epidemic. The epidemic must and can be slowed down, quickly and effectively. The first decade of the epidemic has shown us what approaches are effective and under what conditions. These lessons have been learned from the response in affected communities, be they in Sydney, Kampala or Madras. The community mobilization approach is an attempt to apply these lessons more broadly and to implement them more effectively. For too many people, the HIV epidemic is still a distant spectre. As exemplified in the quote above, the way the epidemic is brought to people's attention will be the critical determinant of how they will respond to it and thus whether they, personally, protect themselves from infection and whether effective and sustainable programmes are established in response to its presence in their midst. An epidemic comes to people's attention through the language of its texts, its presentation and its programming (Watney, 1989; Patton, 1990; Siedel, 1993, for example). There are four dominant and overlapping discourses which have been constructed:
These discourses derive from the beliefs and assumptions about the nature and causes of the epidemic. They reflect the moral, social and institutional values of those who have constructed them and constitute the analytical framework of national responses. It is timely to cast a critical glance over the assumptions and logic of these discourses. The Dominant Discourses: Metaphors and Misapprehensions All four of these dominant and overlapping discourses are dominated by metaphors of small, physically locatable epicentres of spread of the HIV virus which if contained by condoms or bleach or segregation will ensure that the epidemic is held in check. Those who are assumed to fill this description are referred to as 'core transmitters'. Prostitutes, injecting drug users, STD patients and, more recently, truck drivers are the accepted target groups for intervention. In these discourses, there are no metaphors of spread which include whole populations or which include the speaker as well as the others. They are metaphors of distancing: epicentres are located elsewhere, not in groups of doctors. IEC experts or public servants. Such metaphors encourage blame and become their own justification for restrictive or punitive measures. The metaphors of the dominant discourse have reinforced the ancient view of women as spreaders of disease, as vessels of infection for men and vectors of transmission to their infants. Women who work as prostitutes have been scapegoated by this approach and the very dangerous myth born that only such women are at risk of infection. This myth is widespread. The women whose voices began this paper are many. Patterns of HIV infection in women in general should seriously call into question the very concept of epidemic spread by a limited group of sexually active people. The HIV epidemic is propagated by accepted norms of sexual behaviour, particularly of men.
The Distortion of the Metaphors The dominant discourse and its associated programme interventions, particularly the focus on mass education, condom distribution and STD treatment, create an illusion that nations are responding to the HIV epidemic in an effective and sustainable manner. However, there is no evidence that these approaches have been effective in slowing down the epidemic, and there is much evidence to the contrary. For example, there are studies in the US which show that HIV infection rates in female prostitutes are comparable with other women in the same geographical areas (Corea, 1992). It is not that frequency of unprotected sexual intercourse with different partners or the existence of sexually transmitted infections are irrelevant to the analysis. Rather they have their origins in social, psychological, economic and gender relationships and it is these that determine to whom and how rapidly the virus spreads (Reid, 1992b). Furthermore, the disproportionately high infection rates in girls and young women in all populations should force us to add to this list of determining factors the biological immaturity and vulnerability of the female genital tract (Reid & Bailey, 1992). The language of core transmitters and targeted programme approaches is drawn from STD epidemiology and control programmes. Computer models have been used to justify the claim that even a small number of highly sexually active individuals can maintain an STD epidemic in an otherwise low-risk population (May & Anderson, 1987, for example). The public health discourse has centred around the assumption that this analysis provides a basis for programme development, justifying the targeting of resources to groups assumed to be most critical for transmissions, the 'core transmitters'. It has led to the simple imperative: trace them and treat them. This orthodoxy has been transferred to HIV programming (WHO, 1992; Over & Piot, 1991, for example). This is an excellent sample of a programme fitting a model. The pressing question is whether the model fits the world. Programming approaches targeted to 'core transmitters' are based on the following assumptions:
It is either assumed that these models fit the world or reality is forced to fit the model like the feet of the Ugly Sisters into Cynderella's glass shoe. Thus women who work in prostitution, rather than the men who infect them, are singled out as core transmitters. Even among these women, only the more easily accessible are targeted: the bar 'girls', street workers or workers in brothels. All other women who have multiple sexual partners are unrecognized and untargeted. Furthermore, research data have long indicated that it is not only those who have multiple sexual partners who are most prone to sexually transmitted infections (STIs) but also girls and young women. STI infection rates globally are extremely high in adolescents and young adults. Within this group, it is the young men who tend to have frequent sexual intercourse with multiple partners while the young women, who are less sexually active, are more likely to be infected with STIs (Bell & Hein, 1984), for example. These data have long been ignored (Reid 1992a). Nor is it the case that an STI programme approach targeted at core transmitters has reduced these epidemics. Indeed, the global prevalence and incidence rates of STIs are rising both among and beyond so-called core transmitters groups (Mann et al., 1992). These facts alone should cause us to pause before applying either the STD-based core-transmitter analysis or its associated programming to the HIV epidemic. HIV programmes targeted at core groups are justified by the claim that most people are not at risk of HIV infection and that it is not possible and not cost-effective to target whole communities or populations yet the concept of being at risk relates to a person's likelihood of becoming infected. It is clear that those at risk of infection are the spouses and other sexual partners of those who are infected, when unsafe sexual intercourse takes place. Many of these people at risk are not even sexual transmitters; that is, they have no sexual partners others than those who place them at risk. They are identifiable neither as individuals nor as groups, nor are they reachable by targeted programmes. The metaphors of core transmitters and of onwards transmission are embedded within an over-arching metaphor of health as a battle ground and its language of surveillance, targets, control and campaigns. They distort our vision and our language. A paradigm shift is required from those who are assumed to be transmitting the virus, to those who are becoming infected and to those who are not protecting themselves from infection or who cannot do so. This shift could radically change surveillance systems, research agendas, national HIV/AIDS programme approaches and resource allocations. A simple example would be to shift to the recording of HIV infected people by age, gender and occupation as well as classification by risk situation. Such a shift would force a broadening of focus from pathogenic transmission from one individual to another, to the complex socio-economic and other conditions which lead each person to unsafe behaviour. Such a simple paradigm shift would immediately enrich the discourses and their analytical basis.
The dominant discourses are being increasingly challenged by new discourses. A language of optimism is being developed within affected communities as they learn to live with the presence of the virus. This new discourse is about:
This emerging discourse of optimism and empowerment is constructing a new programming discourse: a language of processes rather than interventions, of people as responsible actors rather than as manipulable objects of interventions. The approach that emerges is based on community mobilization for change. It respects and acknowledges the expertise of those directly affected, and its sources of leadership and counselling come from within the community. This new programming approach contrasts sharply with the current programming focus on impersonal technologies, condoms, STI services, blood safety kits, for example, and on directive educational interventions. This is not to deny that the correct use of good quality condoms or the treatment of sexually transmissible infections (and other infections of the genital area) are protective against HIV infection. But these goods and services must be desired by people. People must want to protect themselves from infections, know what their protection options are and must be able to practice them. This will require radical changes in community norms and values relating to sexuality and to gender. Only when these processes are in place can the current interventions be embedded within them and only when this occurs will these interventions contribute to programme effectiveness. The third emerging discourse links the epidemic to development (Museveni, 1991; Kaunda, 1989) and argues that the epidemic has the potential to touch every facet of human, social and economic life. It locates the reasons for the spread of the virus and the nature of its consequences in the psychological, social and economic determinants of people's daily lives. It identifies the factors which predispose individuals and populations to unsafe behaviour as including inequalities of wealth, power and autonomy, sexual norms and social values, attitudes to women, mobility patterns and the legal, ethical and human rights environment. A country's development choices influence the speed and pattern of spread of the virus. In turn, the spread of the virus determines how the epidemic will affect national development and weaken the national capacity to respond. Those countries that are developing participative, community-based institutions, strong social cohesion and adequate redistributive policies will find the epidemic much easier to overcome. There remain discourses yet to be articulated. HIV and AIDS evoke complex and powerful emotions and psychological states. In those as yet untouched by the epidemic, these may include hatred, anger, fear, righteousness, disgust, guilt, shame, humiliation or denial. There has been a reluctance to acknowledge the existence of this side of the epidemic and to address it. There is a deep, culturally-instilled unease which inhibits families and nations from using a language of emotions, vulnerability, sexuality and mortality. There is silence about the dark side of the epidemic, the reality of living with the knowledge that one is infected or that someone one loves dearly is infected: the haunting presence of death, the hesitancy of desire, the longing for love, the uncertainty, the sadness. Even the emotional states, which are central to the belief that the epidemic can be overcome, are unacknowledged in its discourse. There seems to be a reluctance to use words such as 'respect', 'caring', 'compassion', 'love,', 'happiness', 'spirituality', or 'concern' in this context. These emerging and yet to be spoken discourses recognize a basic truth: to understand and respond to this epidemic, one must understand daily life and human nature in all its complexity.
Placing People and Their Communities at the Centre of the Response The language of empowerment leads to a programming approach that places people and their communities at the centre of the response to the epidemic and which builds upon the complex nature of people's daily lives. It recognizes that poverty, wealth, power, subordination and debt, to mention just a few, are essentially interlinked with the HIV epidemic. It should be made clear what is not involved in this paradigm shift. This approach, which could be called community mobilization, is not an argument in favour of existing IEC approaches to the general population. Nor is it an argument for the geographical targeting of prevention messages or indeed any targeting. These approaches have the wrong direction of fit. The role of the outsider must be supportive, not directive. One of the starkest lessons to be learned from the first decade of the response to the epidemic is that whilst information or education may change knowledge, alone they rarely change attitudes or sexual or drug-using behaviour. It is not that information and education have no place; they must be there to be drawn upon by individuals, couples and communities. This is the correct direction of fit and is intrinsic to a community mobilization approach. Nor is this approach an argument against programmes for and within particular communities and groups, including gay men and injecting drug users. At present these programmes are amongst our richest sources of lessons relevant to a community mobilization approach. However, these group-specific programmes must be embedded in broader mobilization networks. It is not only members of particular groups who participate in unsafe behaviour but is also the case that an exclusive group-specific focus will not create conditions of sustainability. The wider community is an important source of volunteers, of workers and of financial, moral and other forms of support. However, it can also be a source of discrimination, indifference, rejection or antagonism, all of which negatively affect programmes. Hence the whole community must understand the need for and be involved in processes of attitudinal and behavioural change. These processes are stimulated by stories of the need for support, of changing attitudes and behaviour, of concern. They consist primarily of face-to-face discussion. They require local leadership and sources of information, advice and counselling within the community. They create agents of change, people who wish to ensure that we respond effectively and compassionately. These are the processes that are already taking place in affected communities (Carr, 1991; UNDP, 1993). However, as yet there are few such communities globally and we cannot wait for them to emerge for by then too many people will be infected. Experience in Africa and elsewhere shows that these processes can be stimulated by local organizations (Williams, 1991), by political, religious and other leaders (Hampton, 1991) and by certain research initiatives (ICRW, 1993). A community mobilization approach will have radical implications for social research design. The research agenda must be influenced or determined by communities and reflect their needs. Social research methodologies will need to be participative and interactive and lead to a process of group and individual introspection, including reflection on socio-cultural norms and values, and on individual and collective behaviour. the process itself of carrying out HIV-related research in such cases become critical and its findings only a part of the stimulation of change. An approach which is centred around community mobilization does not pre-empt the possibility of setting priorities. Firstly, assistance should be given to communities with higher rates of infection. More sophistication will be needed in surveillance systems in order to be able to identify such communities, occupations or locations. Secondly, enough is now known about the physiological, social and economic causes of spread of the virus to be able to identify communities or countries where the virus is most likely to spread rapidly irrespective of present rates of infection. Their identifying characteristics include:
Thirdly, assistance should be given to all groups or communities who actively seek it. These foci of assistance need to be complemented by a more general mobilization and sustained by appropriate forms of assistance, by the availability, accessibility and affordability of the required goods and services and by appropriate legal, ethical and human rights policies and practices. The appropriate entry points for community points for community mobilization are still being explored. Approaches based on the creation of fear and revulsion have been shown to be counter-productive. We know that those who are living this epidemic in their daily lives are powerful catalysts for change. A discussion within a group about how they would react if one of their sons or husbands returned infected can initiate the concern for self and others. Mass media can also be used effectively for attitudinal change. The primary role of outside technical assistance may lie in the transfer of the concepts that are the essence of a sustainable response (Campbell, 1992):
To the transfer of these concepts will need to be added assistance in the management, monitoring and evaluation of the process and skills in drawing down the required services and technologies. There are no methodologies yet developed for determining the cost-effectiveness of processes as distinct from discrete interventions. However, it is likely that the cost of such an approach compares reasonably with the cost of the current components of national HIV/AIDS programmes, including extended surveillance systems, KAP and similar studies, extensive mass media IEC campaigns and securing blood supplies. Furthermore this approach, based on local resources and capacities, creates the conditions for its own sustainability and for the effectiveness of other interventions. REFERENCES Bell, T.A. & Hein, A. (1984) Adolescents and sexually transmitted diseases, in K.HOLMES (Ed) Sexually Transmitted Diseases, pp. 72-84 (New York, McGraw-Hill). Campbell, I. (1992) An Integrated Response to HIV/AIDS: An Opportunity for Community Development and Change (London, Salvation Army). Carr, A. (1991) Behaviour Change in Response to HIV/AIDS: Some Analogies and Lessons from the Experience of the Gay Communities (New York, UNDP). Corea, G. (1992) The Invisible Epidemic (New York, Harper Collins). Hampton, J. (1991) Meeting AIDS with Compassion: AIDS Care and Prevention in Agomanya, Ghana, Strategies for Hope: No. 4 (London, ACTIONAID). International Center for Research on Women, ICRW (1993) Preliminary report on the Women and AIDS Research Programme: evolving a model for AIDS prevention education among underprivileged adolescent girls in urban India (Personal communication). Kaunda, K. (1989) Address to the 6th International AIDS Conference (Montreal). Mann, J., Tarantola, D. & Netter, T. (Eds) (1992) AIDS in the World (Cambridge, Harvard). May, R.M. & Anderson, R.M. (1987) Transmission dynamics of HIV infections, Nature, 326, p.137 Museveni, Y. (1991) New Vision, Address to the 7th International AIDS Conference (Florence). Over, M. & PioT, P. (1991) HIV infection and sexually transmitted diseases (Washington, D.C., World Bank). Patton, C. (1990) Inventing AIDS (New York, Routledge). Reid, E. (1992a) Gender, knowledge and responsibility, in J. MANN et al (Eds) AIDS in the World 199 (Cambridge, Harvard). Reid, E. (1992b) The HIV Epidemic and Development: the Unfolding of the Epidemic (New York, UNDP). Reid, E. & Bailey, M. (1992) Young Women: Silence, Susceptibility and the HIV epidemic, AIDS in Society Infold (October/November, 1992). Seidel, G. (1993) Competing discourse of HIV/AIDS in Sub-Saharan African, Social Science and Medicine, 36, pp. 174-194. United Nations Development Programme (1994) Report on the Asian and Pacific Informal Consultation on Attitudinal and Behavioural Change (New York, UNDP). Watney, S. (1989) Taking liberties: an introduction, in: E. CARTER & S. WATNEY (Eds) Taking Liberties, pp 11-57 (London, Serpent's Tail). Williams, g. (1991) From Fear to Hope: AIDS Care and Prevention at Chikankata Hospital, Zambia, Strategies for Hope: No. 1 (London, ACTIONAID). World Health Organization (1992) The Global Strategy for the Prevention and Control of AIDS (Geneva, WHO). Acknowledgements This article was reprinted with the permission of AIDS Care. It was first published in AIDS Care, Vol.6, No. 5, 1994. Biographical Note Elizabeth Reid is a Senior Adviser, Bureau for Policy and Programme Support, United Nations Development Programme (UNDP), New York. Before joining UNDP, she worked closely with community groups working within the HIV epidemic in Australia and was responsible for the formulation of Australia's first National HIV/AIDS Strategy. She has extensive experience in development theory and practice, including programme design and evaluation in Africa, Asia, the Pacific, the Middle East, and Latin America and the Caribbean. |
