Health rights for women in the age of AIDS

Ida Susser

Graduate Center and Hunter College, Department of Anthropology, City University of New York, New York, NY, USA.

Revised for International Journal of Epidemiology from a presentation at ‘Turning the World Around: Public Health, Human Rights and the Establishment of Civil Societies’. Columbia University Symposium, 25 May 2001.

Accepted 8 October 2001

Gender inequality continues to fuel the 20-year-old HIV/AIDS epidemic in many countries.1 Although in the US and Western Europe HIV/AIDS predominantly affects men, in 1999, worldwide, UNAIDS reports approximately the same figures for men and for women—i.e. 1.1 million deaths among men and 1.2 million among women.2 In sub-Saharan Africa, prevalence figures estimated by UNAIDS for the numbers of men and women infected with HIV are 10.1 million and 12.2 million, respectively.3 In addition, women are becoming infected with HIV/AIDS and dying at younger ages than men.3 Estimates for southern Africa suggest that 50% of children age 15 now will die of HIV/AIDS and that three times as many girls as boys in the age group 15–29 are already infected with the virus.4 However, we are still not able to offer women effective strategies for prevention and governments and non-governmental organizations (NGO) are struggling to develop appropriate counselling and treatment options. Under these dire circumstances, it becomes essential to continually re-consider our approaches.

Let me begin by recognizing the specific influence of Zena Stein on women's health and women's rights. Long before the advent of HIV/AIDS, Zena, always in co-operation with and supported by Mervyn Susser, had embarked on her many decades of research on reproduction and spontaneous abortion. However, soon after the HIV virus was identified, she turned her concerted attention towards the particular problems of women and AIDS.

In the early 1980s when HIV/AIDS was first noticed and later diagnosed medically among gay men, the emphasis was on the men. Almost immediately, poor women with the disease were also identified. However, they were swiftly classified according to other characteristics, as Haitians or as partners of drug users. They were not seen collectively as women. Some time later, transmission of the virus from HIV-positive mothers to one-third (in the US, and a greater proportion in sub-Saharan Africa) of their infants was discovered. However, these unfortunate mothers, seen in some contexts as guilty women producing innocent victims, often aroused scant concern for their own condition.6

It has been well-documented that in the US women were long neglected in research and medical care with respect to HIV/ AIDS, a neglect exemplified in diagnosis, pathogenesis, treatment and benefits.1,5,6 In Africa, neither men nor women benefited much from scientific advances in medical care and public health. The Multicenter AIDS Cohort Study, (MACS) a longitudinal cohort initiated in 1984 and funded by the National Institutes of Health, was confined to gay men in the US and provided much early knowledge of the pathogenesis and prognosis of the disease, and later of responses to treatment This research provided the base for over 550 publications on HIV/AIDS. Although the knowledge gained from this work was crucial, it could not adequately document the way in which HIV/AIDS reflects the environment in which it is found: in the dominant modes of transmission and the social relations through which transmission is patterned; in the specificity of opportunistic diseases and the synergisms between them; and in the variable responses to treatment with respect to gender, nutrition and general health status.

As Zena and others pointed out, in line with its early spotlight on gay men in the US, research into sexuality and HIV/AIDS is much better developed among men than among women.7 Despite this climate, and before women sex workers were targeted as an at-risk population, Zena Stein and Robin Flam, then her student, extrapolating from what was known to what was likely, began to develop research on women sex workers. In sub-Saharan Africa there was a need for more research into contemporary sexuality and HIV/AIDS among both men and women. Zena joined with Anke Ehrhardt to create one of the few US research centres where such issues have been researched and discussed, and with respect to southern Africa, Zena has been the centre's spearhead.

Methods Women Can Use

Early on, Zena conceptualized the conflict between the use of the male condom and the limited ability of women to insist on its use in order to protect themselves from sexually transmitted infections and from mortal infection by HIV in particular.8 She proposed a possible role for a protective substance, a vaginal microbiocide (she termed it virucide) which a woman could apply clandestinely, if need be, and pressed for research to create and test such a product. She raised the possibility, especially relevant in Africa, for a microbiocide to be formulated that would yet allow sperm to survive. She also recognized a role for the female condom, just then seeking FDA (US Food and Drug Administration) approval—a process that took 7 years!

These ideas, conceived in 1987, were put forward in a paper, in turn submitted to and turned down by the New York Times (as an Op-Ed), then the New England Journal of Medicine, then The Lancet and finally the American Journal of Public Health (AJPH). When several reviewers prominent in the AIDS field advised rejection, Alfred Yankauer, the then editor of the AJPH decided to publish it anyway.8 In retrospect, the paper is seen by many as a classic and a breakthrough in thinking about women and the prevention of sexually transmitted diseases. She developed the idea further in her Plenary presentation to the Tenth HIV/AIDS International Conference in 1994 at Yokohama, Japan, the first time a major session was devoted to methods women can use.

Women's Changing Experiences with HIV/AIDS in Southern Africa

Since the efforts of Zena and others in the late 1980s, women have clearly been the focus of much work on HIV/AIDS. Health educators and community activists have concentrated on women for education about prevention. However, early messages to them could not be narrower: ‘ask the man to use a condom’ and ‘love faithfully’, disregarding the fact that, unlike their men, many women who contract AIDS only have one partner, usually their husband.6

Nevertheless, in spite of this concentration on women's education, in southern Africa, the 1:1 prevalence sex ratio of women to men found at the outset has now risen, as noted above, as high as 3:1 in the 15–29 age groups.4 In the face of such rising rates among women, many concerned health leaders are now calling for attention to men, as those generally wielding greater power in heterosexual relationships.

While tardy, this concern to reach men is constructive and important. However, my own fieldwork and my analysis of policy suggest that a further concern deserves attention. Women's diseases have now been counted and their immediate knowledge and perceptions of disease analysed; at the same time, in analysing the contexts in which prevention is to be introduced we have under-used an essential resource—the women's own abilities to change and to develop new opinions and strategies. In order to build on this crucial resource, we need to facilitate women's control of their own sexuality and their freedom to actively make choices and determine strategies. Microbiocides might be suggested here, but, so far, findings have not matched expectations in this research.9 The only existing alternative that women can use, the female condom, widely accepted by many women in southern Africa and elsewhere, needs to made more accessible.10–12 Women need to hear over the radio and in their churches and clinics information about all forms of prevention and the care of people with AIDS. Both in KwaZulu/Natal, South Africa and in the Oshikati and Rundu areas of Namibia, we found women anxious to receive information and struggling to find community strategies to address the tragedy. We found women taking care of members of their families with HIV/AIDS but not having the necessary resources, such as plastic gloves, medication or transportation, knowledge of possible treatments and safety procedures for the providers.

Some enlightened NGO have tried to provide strategies and options for women. One outstanding example has been the longstanding support by the British NGO, Action Aid, of one of the first and most effective women's organizations in Africa, The AIDS Support Organization (TASO). TASO was first organized in Uganda in the 1980s by a few committed professional women, several of whom were AIDS widows, looking for a way to confront the epidemic. TASO became an international model for women's organizations in the struggle against AIDS and stigma and now, replicated in many other countries throughout Africa, provides care, counselling and support for people with AIDS and their families.13

The idea that women can change and learn new strategies to address the AIDS epidemic seems contradicted by reports that pregnant women may not go for testing even when they are informed that their babies could be saved by medical intervention, such as the administration of antiretroviral drugs during labour. In a recent interview, one Botswana woman asked a trenchant theoretical question: ‘how will my baby live if I am not there to take care of her?’. This was neither ignorance nor superstition, but a thoughtful questioning of the reach of medical solutions. A Zambian woman, HIV positive and with two infected infants, represented a contrasting perspective when she said to a reporter: ‘Of course I shall try to become pregnant again, because only then will I have another chance for a baby that will live’. In fact, the perspectives of each mother reflect clearly rational choices in different social contexts. Some studies of HIV/AIDS orphans document a life of stigma, deprivation and misery as was possibly envisaged by the Botswana mother. However, a recent follow-up of 18 HIV/AIDS orphans in Windhoek, Namibia, not published as yet, but conducted by Scholastika Iipinge and other researchers at the University of Namibia, offers some hope. This research, which suggests that the children in foster placements with relatives were not treated differentially from other children raised in the same households, would provide support for the Zambian mother's determination to try for a third time to give birth to a healthy baby.

Such contradictory perspectives and findings as these should give us pause when we advocate ‘counselling’ as a solution. The real question facing us is ‘counselling for what?’. The ramifications of the epidemic are continually changing as the disease moves across different groups and recasts the social situation as it ravages the population. In order to address this challenging and fast-changing disease, we have to assist local people with whatever resources and knowledge are currently available, but nevertheless, we have to enlist the women themselves in working out what is appropriate action. Perhaps, initially, HIV/AIDS orphans were particularly stigmatized in many places, perhaps now that HIV/AIDS has become a way of life in almost every extended family in southern Africa, orphans are no longer singled out in this way. Obviously parents that see possibilities for their children to live can also make different decisions with respect to the substitution of formula for breastfeeding, or in finding HIV-negative foster mothers to nurse the babies of HIV-positive women. Both men and women are beginning to confront and cope with the epidemic in new ways and ‘counselling’ or ‘education’ has to continually re-adjust both to the mutations of the virus and the creativity of the local people.

Our failures to protect women are not reason to abandon women for work among men. Ethnographic research in southern Africa since 1992, conducted by myself and colleagues, concerned strategies available to men and women to protect their communities from HIV/AIDS and to care for those affected by the disease, and offers some new approaches to the problems of gender inequality.11,12,14–18 In South Africa and Namibia we found that both men and women said that given the woman's condom, they would not hesitate to use it.11,12 In 2000, a Namibian NGO, Women's Action and Development, adopted the cause of the female condom and actually organized a demonstration to demand access for Namibian women. Some of the local researchers, in combination with active local representatives from WHO and UNAIDS, formed a Women's Health Inititiative. The Namibian Ministry of Women's Affairs, with support from UNAIDS and UNICEF, conducted trials to see if women would use the female condom. The report documenting the success of these trials, combined with active support and petitions from local men and women, resulted in the public launching of the ‘Femidon’ (the woman's condom) as part of Namibian HIV/AIDS prevention options.19 Although prices were subsidized, people still had to pay $8 Namibian for three female condoms (approximately $1 US) in contrast to approximately $2.50 Namibian (approximately 25 cents US) for 10 male condoms. In the first 3 months after launch marketers expected to sell 3000 female condoms. In fact, 18 000 were sold! Such events dramatize the fact that, even at higher costs, men and women are willing to try new methods and strategies in order to confront the AIDS epidemic and that a method that may not have been imaginable before the epidemic can be culturally appropriate now.

Among the San of the Kalahari, where Richard Lee and I have been conducting fieldwork, women, as in other parts of southern Africa, were interested in the female condom. However, they contrasted significantly from other women in the region in their attitudes towards men. Where many women among the Ovambo and Kavango in Northern Namibia expressed some fear about directly discussing sexual issues with their male partners, San women were less intimidated. In 2001, in a San village, a woman said to me ‘Give us the condoms and we will teach our men to use them’. In this short sentence she expressed a sense of entitlement. This, supported by a wide range of ethnographic data we collected among the San and rarely found elsewhere, demonstrates the importance of understanding women's options as they vary among different groups.12 In addition, among the San, the practice of women nursing the babies of other mothers has been long documented.20 In 2001, we noted at least one instance of a San daughter breastfeeding the surviving baby of her recently deceased mother, along with her own newborn child. Such strategies, combined with an effort to inform women of their own HIV status, could be mobilized among kin who wished to protect babies from the HIV virus.

Changing Gender Expectations

In every society values are contested and those contests and their partisans have to be understood in historical context. An appropriate address to the HIV/AIDS epidemic requires understanding evolving visions of gender and sexuality among women in southern Africa. These conjure up a range of ideas as cultural views and voices change: ideas of boundaries of the body; moments when conversation is allowed and when people may not speak out; when and at what ages among young girls' virginity can be insisted on and in what ways such insistence on virginity may be used counterproductively and repressively against the young girls themselves; under what circumstances can single or married women safely refuse sexual intercourse. In different situations around the world, men have begun to change their images of masculinity, helping with child care and limiting their sexual partners, in response both to changing social conditions and, specifically, to the demands of women. This evidence of men's flexibility also suggests hopeful directions for HIV/AIDS prevention.21 Finally, but of considerable import, are responses to the threat of HIV/AIDS in which communities adapt collective strategies locally and social movements may grow in broader scale and thus transform the available options for prevention and treatment.

No less important than understanding the changing views of men and women in southern Africa, is to understand the perceptions among the cosmopolitan policy makers in the centres of power in the modern world, in cities like New York, Washington and Geneva. What options such influential groups regard as culturally appropriate for the women of southern Africa confronting the epidemic. Both international decision-makers and local health professionals, relying on earlier ethnographic descriptions of tradition, culture and modesty, can too easily fail to grasp the capacities of people to change and learn new methods, or for communities to respond constructively as they face the extreme circumstances of the epidemic. Only if global decision-makers have a clear understanding of the potential of women and men to respond to desperate circumstances in constructive ways can they direct the finances and the intellectual resources in effective ways.

Gay men in the US have fought to have their sexuality viewed with dignity and consideration and to take control of their own future, nevertheless, still, poor gay men have fared least well.22 Since it has been poor women, women of colour and women of Africa who have been the most dramatically affected by HIV/ AIDS, and since such women may have even less access to power than those stigmatized for sexual orientation, their sexuality has not been afforded the same consideration and dignity. Neither HIV international policy makers nor local public health workers have yet been fully effective in providing the resources for women to define and expand their own strategies and options for protection, treatment and care with respect to HIV/AIDS.

The treatment of the female condom, in the US media and even among many women researchers on microbiocides, is a contemporary and important example.10–12 As long as the female condom is dismissed as a cumbersome and inelegant device in the US and judged by different standards than the male condom, its acceptance as a highly desirable alternative to the male condom in southern Africa can be conveniently ignored, a tragic loss to the urgently needed prevention agenda.

From the international to local level we need to re-examine the extent to which we have or have not understood and facilitated women's own concerns, choices and plans. In the light of the continuously changing biological and social context of HIV/AIDS we need to work towards an approach which gives women the tools they need, and enrols them as strategists. Only under such conditions can scientific perspectives reach their full potential in combating the HIV/AIDS epidemic.

Acknowledgments

I would like to thank all the people who contributed to this work. Quarraisha Abdool Karim, Eleanor Preston-Whyte, Nkosasana Zuma, and Zena Stein all contributed to the work in South Africa. Richard Lee, Pombili Ipinge, Scholastika Iipinge, Karen Nashua, Marjorie Katjire, Katie Hofne, Karen Brodkin and Philip Kreniske (grandson of Mervyn and Zena) developed and conducted the research with me in Namibia. In addition, I would like to thank the HIV Center, Columbia University, The Fogarty Foundation and the PSC-CUNY Research Foundation for their support.

References

1 Piot P. A gendered epidemic: women and the risks and burdens of HIV. J Am Med Women Assoc 2001;56:90–91.[Medline]

2 UNAIDS. Global Summary of the HIV Epidemic, End 1999. Report on the Global HIV/AIDS Epidemic. Geneva: Joint United Nations Programme on HIV/AIDS, 2000.

3 The Progress of Nations. Geneva: UNICEF Publications, July 2000.

4 UNDP/Government of Botswana. Towards an AIDS-Free Generation. Botswana Human Development Report, Government of Botswana, Botswana, 2000.

5 Farmer P, Connors M, Simmons J (eds). In: Monroe ME. Women, Poverty and AIDS: Sex, Drugs and Structural Violence. Monroe, ME: Common Courage Press, 1996.

6 Gupta RG, Weiss E, Whelan D. Women and AIDS: building a new HIV prevention strategy. In: In: Mann J, Tarantola E (eds). AIDS in the World II. New York, Oxford: Oxford University Press, 1996, pp.215–29.

7 Stein Z, Kuhn L. HIV in women: what are the gaps in knowledge. In: Mann J, Tarantola E (eds). AIDS in the World II. New York, Oxford: Oxford University Press, 1996, pp.229–36.

8 Stein Z. HIV prevention: the need for methods women can use. Am J Public Health 1990;80:460–62.[Abstract]

9 Report of Microbiocides 2000, Washington DC. AIDS Feb. 2001;15(Suppl.).

10 Gollub E. The female condom: tool for women's empowerment. Am J Public Health 2000;90:1377–81.[Abstract/Free Full Text]

11 Susser I. Sexual negotiations in relation to political mobilization: the prevention of HIV in comparative context. AIDS Behav 2001;5:163–72.[CrossRef]

12 Susser I, Stein Z. Culture, sexuality and women's agency in the prevention of HIV/AIDS in Southern Africa. Am J Public Health 2000;90:1042–48.[Abstract/Free Full Text]

13 The AIDS Support Organization. (TASO) Living Positively with AIDS Strategies for Hope, Uganda. The AIDS Support Organization, 1990 (revised 1991).

14 Abdool Karim Q, Abdool Karim J. Women try to protect themselves from HIV/AIDS in KwaZulu-Natal, South Africa. In: Turshen M (ed.). African Women's Health. Trenton, NJ: Africa World Press, Inc., 2000, pp.69–83.

15 Abdool Karim Q, Morar N. Women and AIDS in Natal Kwazulu: determinants to the adoption of HIV protective behavior. Report for International Center for Research on Women, Washington, DC, 1993.

16 Preston-Whyte E, Varga C, Oosthuizen H, Roberts R, Blose F. Survival sex and HIV/AIDS in an African city. In: Parker R, Barbosa R, Aggleton P (eds). Framing the Sexual Subject. Berkeley, CA: University of California, 2000, pp.165–91.

17 Ipinge S, Ipinge P, Lee R, Susser I. Capacity Building in Social Research on AIDS Case Studies in Namibia. XIII International AIDS Conference, Durban, South Africa, July 2000.

18 Lee RB, Iipinge S, Ipinge P, Susser I. Culture and Political Economy of AIDS in Southern Africa: A Synthesis with Practical Implications. XIII International AIDS Conference, Durban, South Africa, July 2000.

19 Ministry of Women Affairs and Child Welfare. The Female Condom, Republic of Namibia: funded by UNAIDS and the National Social Marketing Program, 2001. Government of Namibia, Namibia, 2001.

20 Lee R. The Kung San. New York: Columbia University Press, 1971.

21 Gutmann M. The Meanings of Macho. Berkeley, CA: University of California Press, 1996.

22 Maskovsky J. Sexual minorities and the new urban poverty. In: Susser I, Patterson T (eds). Cultural Diversity in the United States: A Critical Reader. Malden, MA: Blackwell, 2001, pp.322–43.





This Article
Extract
FREE Full Text (PDF)
Alert me when this article is cited
Alert me if a correction is posted
Services
Email this article to a friend
Similar articles in this journal
Similar articles in ISI Web of Science
Similar articles in PubMed
Alert me to new issues of the journal
Add to My Personal Archive
Download to citation manager
Search for citing articles in:
ISI Web of Science (2)
Request Permissions
Google Scholar
Articles by Susser, I.
PubMed
PubMed Citation
Articles by Susser, I.