What do we know about men living with and/or dying from AIDS?
Article Outline
In 2007 around 33 million people were living with HIV worldwide, while about 2 million died of AIDS [1]. Around 50% of these were men and 96% of them were from developing countries. However, we know almost nothing about either their lives or their deaths. This reflects the narrow focus of social science research in the context of the pandemic. Most studies have been concerned with the development of prevention strategies through the promotion of behavioural change [2]. As a result, those men and women who are already HIV positive have received little attention. Men who live in the poorest parts of the world have been the least visible of all.
In the early years of the pandemic, some researchers explored the HIV-related experiences of (usually white) gay men in the US as they struggled to come to terms with a life threatening illness. However, men defining themselves as heterosexual rarely received attention. This invisibility reflected both the perceived shape of the local epidemic and also the role of gay activists in bringing attention to the need for further research and better care in their own communities.
By the late 1980
s things had begun to change. The gradual introduction of a range of anti-retroviral therapies (ARVs) meant that those who had been expected to die could now “reclaim their lives”. This engendered a new interest among researchers in those who were surviving with what was now seen as a “chronic disease” – albeit one with a number of unique characteristics and a wide range of uncertainties about probable survival times. But again these studies were concentrated mainly on gay/bisexual men (and to a lesser extent “minority women” in the US and a few other developed countries.
In reality, the pandemic was now global in scope and in most parts of the world it was spread by penetrative sex between women and men or (to a lesser extent) by injecting drug use or contaminated blood. Hence available evidence on the lives of gay/bisexual men in the rich countries of the world was of little relevance to the vast majority of men affected by HIV whose sexual activities involved women and who had limited (if any) access to ARVs.
The implications of this research bias are very clear in the African context. That region now contains 11% of the world's population but about 66% of those living with HIV and 75% of those dying with AIDS. Most were in poverty before they were infected so that HIV simply added an additional burden to their struggle for survival. In recent years their access to ARVs has substantially increased. However, it still stands at only 30% of those known to be in need (compared with over 90% in the US). If these men are to have more effective and appropriate services we need to know much more about the material circumstances of their daily lives as well as their perceptions of themselves and their illness.
The scale of the epidemic in Africa and the gradual introduction of ARVs have led to the beginnings of a research agenda on life with HIV in resource-poor settings. This work has been concentrated in South Africa where the epidemic is especially severe and where there is also a critical mass of social scientists [3], [4]. However, a quick review of that literature shows that it is still very limited in what it can tell us about the more than 10 million men living with HIV in Africa [5], [6].
First, we know almost nothing about the circumstances of gay men whether they are HIV positive or not. For many years the existence of gay/bisexual men (and women) has been widely denied in most African settings [7]. Homosexuality remains a crime in most countries and homophobia is widespread. Indeed it has been actively encouraged by leaders in a number of countries as a way of promoting nationalist discourses. It is clear that many gay/bisexual men in Africa must be infected but we have very little idea of how many or of its impact on their lives. However a recent review has suggested that in some parts of Africa gay men are ten times more likely to be HIV positive than heterosexual men [11].
Given the importance of the heterosexual transmission of HIV in Africa, a growing number of researchers have now begun to focus on the sexual lives of couples where one or both are HIV positive. However, these are mostly quantitative in approach and continue to be concerned primarily with what has been called “positive prevention”. Very few have gone beyond this to explore the more experiential aspects of living with HIV. In particular there is a lack of studies exploring the differences between male and female experiences of HIV and AIDS. Hence we know almost nothing about the relationship between sero-positivity and different masculinities [8].
Two recent studies of HIV positive African migrants in London are among the first to begin to fill this gap [9], [10]. Both were qualitative in approach, using semi-structured interviews and focus groups to explore the narratives of men of African origin receiving treatment for HIV. The first study was carried out with a sample of men who identified themselves as heterosexual, while the second was done with a group who saw themselves as gay/bisexual.
Not surprisingly both groups had many things in common: shock at their diagnosis, fear of disclosure, obstacles in their attempts to support themselves and fear that that they might be forced to leave the UK if their legal status was changed. However, there were also important differences in the challenges they faced and how they responded to them.
The main theme emerging from interviews with the heterosexual men was the difficulty of combining their identities as what they themselves termed “African” men with their status as HIV positive and therefore “sick”. They frequently used the metaphor of “weakness” to describe not just their physical and/or psychological condition but also to clarify their economic and social circumstances.
When asked about their sexuality, most reported that both their desire and their activity were much diminished. The majority of those who were in relationships with women reported being unable to meet either their own or their partner's sexual expectations. Most also talked about the distress they felt about their inability to earn enough to support themselves and/or their families. This often led to dependency on others, which added to their loss of their sense of their own masculinity.
Lack of money combined with poor health prevented many of the single men from finding and/or keeping relationships with women. Many also felt unable to maintain activities with male friends such as nights out or playing football. Hence they often reported feeling isolated and lonely. Obtaining a job was seen as the key to a “bright” future and they wanted to make sure they stayed strong enough to achieve this. But this was often very challenging and they faced considerable difficulties in sustaining a positive sense of themselves and their place in the world.
The study of gay/bisexual men inevitably revealed some commonalities but also many differences. For these men the move to London gave them a greater degree of freedom to express their own desires and to form relationships with other gay men. Moreover they did not appear to face the same contradictions between masculinity and illness. However, they did report experiencing a double stigma of being both gay and HIV positive especially within African communities. Many talked about the ways in which continuing homophobia forced them to choose between living as an “African” or as a gay man.
These tensions forced many into a life of secrecy and loneliness where they could reveal their situation to very few people. Significantly, many talked about the importance of religion in their lives but highlighted the difficulty they found in “coming out” in this context where homophobia was often very evident. They also described the difficulties of deciding how to present themselves when accessing health and social services, some of which were targeted towards “Africans” and others towards “gay men”. Neither of these was appropriate to their circumstances and this sometimes placed obstacles in their search for care.
This brief survey has highlighted how little we know about the vast majority of men living with HIV and dying with AIDS. In the developed countries we know more about the lives of gay men than those of heterosexual men. In the rest of the world we know almost nothing about the lives of HIV positive men, whatever their sexual identities and practices. This knowledge gap needs to be filled by research across a range of communities and socio-economic settings. Only then will we have an evidence base for the development of appropriate and gender-sensitive policies for those millions of men already infected and those who will inevitably join them as the pandemic continues.
References
- UNAIDS. Report on the Global AIDS Epidemic 2008. Geneva: UNAIDS, 2008.
- . Challenges in researching life with HIV/AIDS: an intersectional analysis of black African migrants in London. Cult Health Sex. 2009;11(2):173–188
- . When Bodies Remember: Experience and Politics of AIDS in South Africa. San Francisco: California University Press; 2007;
- . HIV in South Africa: Talking About the Big Thing. London: Routledge; 2007;
- . Changing Men in Southern Africa. London: Zed Books; 2001;
- . An exploratory study of constructions of masculinity, sexuality and HIV/AIDS in Namibia. Southern Africa. Cult Health Sex. 2005;7(6):585–598
- . “Elvis died and I was born”: black African men negotiating same-sex desire in London. Sexualities. 2008;11(1/2):171–192
- . “You are not yourself”: exploring masculinities among heterosexual African men living with HIV in London. Soc Sci Med. 2009;68(10):1901–1907
- Doyal L, Anderson J, Apenteng P. “I want to survive, I want to win, I want tomorrow”: An Exploratory Study of African men Living with HIV in London. London: Terence Higgins Trust Report, 2005.
- Doyal L, Anderson J, Paparini S. “I count myself as being in a different world”: African Gay and Bisexual Men Living with HIV in London. London: CSSHH Report, Homerton Hospital NHS Foundation Trust, 2007.
- Smith AD, Tapsoba P, Peshu N, Sanders EJ, Jaffe HW, Men who have sex with men and HIV/AIDS in sub-Saharan Africa, Lancet 2009, doi:10.1016/S0140-6736(09)61118-1.
PII: S1875-6867(09)00069-4
doi:10.1016/j.jomh.2009.06.002
© 2009 WPMH GmbH. Published by Elsevier Inc. All rights reserved.
