Issues Paper No. 8

WOMEN, THE HIV EPIDEMIC AND HUMAN RIGHTS:
A TRAGIC IMPERATIVE
Julie Hamblin & Elizabeth Reid

 TABLE OF CONTENTS

INTRODUCTION
THE EPIDEMIOLOGY OF HIV INFECTION AND AIDS IN WOMEN
THE STATUS OF WOMEN AND THE HIV EPIDEMIC
PREVENTION IN WOMEN
STRATEGIES FOR CHANGE
CONCLUSION
ENDNOTES
ACKNOWLEDGEMENTS
BIOGRAPHICAL NOTE

 PROLOGUE

OTHER WOMEN'S VOICES

 "We fear what our husbands may bring home." - Ugandan woman

 "When I was told that this disease is mainly spread by sex, I started to worry about my husband .... So long as he gave us enough money for our needs I was grateful. I could never ask questions about his girlfriends. I suppose I always expected him to have other women because he was alone in town. This is what men are like, isn't it?" - Zimbabwean woman

 "As in the case of birth control pills, men will suspect women who want to use condoms of servicing other men." - Ugandan woman

 "The women tell us they see their husbands with the wives of men who have died of AIDS. And they ask, 'What can we do? If we say no, they'll say: pack up and go. But if we do, where do we go to?" - Miria Matembe, member of the Ugandan parliament.

 "Often relatives will encourage a man who appears fit and well to leave his wife with AIDS and find another one, with no understanding that he may pass the infection on to another woman. We have some clients who have lost a number of wives -- and yet their relatives are still persuading the man to find a new one." -Noerine Kaleeba, Uganda

 "I wanted to remind him that, like condoms, drinking tea and using metal forks were not our culture." - Ugandan woman

 "Many women I meet .... say they cannot leave the situation they are in because they are economically dependent on their partners. Another woman I know, whose child had been raped by her partner, could not prevent that man from visiting her because she had no other way of feeding her children." - Dr. Sunanda Ray, Zimbabwe

 "The prospect of not being able to have children was -- for me --at least as daunting as the possibility of a premature death. I needed the support of other women who had been through a similar process of saying good-bye to a future with children." - Amanda Heggs, British

 "Fifty percent is the best odds I've been given since I was diagnosed as carrying this virus." - A poor, black seropositive American woman ... upon being accused by her physician of making an irresponsible decision in choosing to bear a child

 "I am still hoping to have a child. ...I have been told that it is totally selfish, that I have no right to inflict the potential for suffering on an as yet unborn child. Who says I have no right? If I am lucky enough to fall pregnant, my child will be loved and wanted. Will that be further reason for rejection by society? I hope not." - Zimbabwean woman

 "To be alone and dying yet trying to care for one's own HIV-infected child is a tragedy, the dimensions of which few of us can truly comprehend." - Catherine Hankins, Canada

INTRODUCTION

"Like every other epidemic, AIDS develops in the cracks and crevasses of society's inequalities. We cannot face the epidemic if we try to hide the contradictions and conflicts which it exposes." -

Herbert Daniel, Brazil

Women require special and urgent consideration in the response to the HIV epidemic. It may not be clear why, in the case of a virus that can infect a person regardless of sex, race or social status, we should single out women as one group for separate consideration. This seems to deny the universality of the threat of HIV infection.

However, the HIV virus is not random in its spread or in its impact. The epidemic is inextricably bound up with the social and cultural values and economic relations which underlie the interaction between individuals and within communities. In its impact, the spread of the virus is facilitated by social inequalities and, in turn, reflects and reinforces those inequalities. It differentiates not only in its medical manifestations but also in its disproportionate impact on those who are socially, sexually and economically vulnerable.

Women, because of their social and sexual subordination, are disproportionately affected by the epidemic. The dynamics of sexual relationships mean that many women are unable to protect themselves against sexually- transmitted HIV infection, the predominant mode of infection. Globally, it is estimated that 60% of all cases of infection occur through vaginal intercourse. In sub-Saharan Africa, the estimate is 80%.

As wives and sex workers, women are at risk of sexual transmission. As mothers, women must deal with the implications of HIV infection for unborn children. As mothers, aunts, sisters, grandmothers and daughters, women will have to care for the children orphaned by the epidemic. As carers, women bear the burden of caring for sick and dying partners, children, relatives and neighbours and attempting to hold the family unit together in the face of sickness and death. On all these counts, women are disproportionately affected by the epidemic.

An understanding of the factors that affect women is critical to any effective measures to contain the spread of HIV and to deal with its effects for both women and men. The vulnerability of women to HIV must be understood in the broader context of deeply embedded social and gender inequalities which lie at the heart of women's inability to deal effectively with the risks and needs created by the epidemic. Unless the interaction between HIV infection, cultural values and the rights and needs of women is recognised, the fundamental changes required to stem this epidemic will be unattainable.

THE EPIDEMIOLOGY OF HIV INFECTION AND AIDS IN WOMEN

 In 1990, the World Health Organization estimated that there were between 8 and 10 million people worldwide infected with HIV. More than 3 million of these people are women.¹ Even more alarming is the rate at which infection among women has been increasing. The number of infected women rose sharply during the second half of the 1980's and, in some areas of Africa, Latin America and the Caribbean, there was more than a fourfold increase over a period of between two and four years.^2,3 It is estimated that during the next decade the prevalence of HIV infection among women will equal and, in some cases, overtake that of men.

The World Health Organization estimates that during the 1990's, the number of women and children dying of AIDS will rise to 3 million. In most central African cities and in some major cities in America and Western Europe, AIDS is already the leading cause of death for women between the ages of 20 and 40. In sub-Saharan Africa over the next few years, infant mortality is expected to increase by up to 30% as a result of perinatal transmission of HIV.¹

It is estimated that approximately 80% of the total number of women and children currently infected with HIV are in sub-Saharan Africa. In this region, one in every twenty adult women is thought to be infected,⁴ and women represent more than 50% of the total number of AIDS cases.¹

The majority of infected women are of child bearing age, opening the way for perinatal HIV transmission to these women's children on a large scale. UNDP has estimated that over 85% of the cases of paediatric infection in Africa have resulted from perinatal transmission. For the Caribbean the estimate is 97.5%.⁵

Even where the children do not themselves have HIV infection, the number of children orphaned by AIDS is increasing rapidly. World Health Organization has estimated that as many as 10 million children in sub-Saharan Africa will be orphaned by the epidemic by the end of the 1990's.¹

The primary HIV risk activity for women globally is sexual activity. Over 90% of women currently infected with HIV have been infected as a result of transmission through vaginal intercourse. Efficacy of transmission is increased where women have poor general health and suffer from genital lesions, inflammation, secretions and scarification. Women are also at increased risk of being infected with HIV infection through contaminated blood and injections because of the high incidence of blood transfusions and injections associated with pregnancy, childbirth and post-pregnancy haemorrhage or treatment for anaemia caused by repeated pregnancies.⁶

The World Health Organization has admitted that its estimates of the levels of infection among women and children should be viewed as very conservative.¹ It is likely that under- reporting of HIV infection and AIDS in parts of Africa, the Caribbean and Asia, where women make up a large proportion of the infected population, has helped to conceal the true levels of infection. However, even the estimates currently available leave no doubt as to the magnitude of the impact of the HIV epidemic on women.

THE STATUS OF WOMEN AND THE HIV EPIDEMIC

While the levels of HIV infection and AIDS among women demonstrate clearly the magnitude of the problem, an understanding of HIV infection in women requires more than just an appreciation of the statistics. The social and cultural determinants of HIV infection in women are very different from those for men because they relate to the role of women within relationships, families and communities which, in turn, determines the nature and patterns of sexual activity and other factors that place women at risk of HIV infection. An understanding of the epidemic must therefore include not only how women have been affected but also why they have been affected.

HIV infection is preventable. Given access to information and appropriate preventive measures and the means of implementing these measures, there need be no new cases of infection. But poverty, dependency and powerlessness strip a person of the ability to protect herself or himself against infection. It is therefore inevitable that, as the epidemic progresses, those people who have the power to protect themselves against infection will be in a position to do so while those people who do not will continue to be infected in ever- increasing numbers.

The link between powerlessness and the risk of exposure to HIV provides the key to understanding the source of women's vulnerability to HIV infection. It is the reason why HIV infection is increasingly a condition of all women, regardless of race, colour or economic status. In more developed countries, the full impact of these social and cultural dynamics was not apparent in the early years of the epidemic when the majority of reported cases was among homosexual men. With dramatic increases in infection levels in women in both the developed and the developing world, however, there has been a shift in the global demographics of HIV infection. This shift has forced a reassessment of the role of socioeconomic factors in the spread of HIV in order to address the ways in which women are being affected by the epidemic.

The male orientation of the understanding of the epidemic to date is evident also in the way HIV-related illnesses and AIDS have been defined. The case definition of AIDS issued by the United States Centres for Disease Control and used worldwide focuses on the marker diseases that are characteristic of HIV- related illness in men and omits conditions that often signify the onset of HIV-related conditions and AIDS in women, including pelvic inflammatory disease, cervical cancer, vaginal candidiasis and conjunctivitis. This has had serious consequences for women, leaving many women undiagnosed or wrongly diagnosed, delaying diagnosis and treatment and denying women access to disability and other benefits and services because they have not been diagnosed with AIDS.⁷

The patterns of social and economic dependency that render women vulnerable to HIV infection are manifested in many different ways. First and foremost, they lead to women being deprived of the power to determine the basis upon which their sexual relationships with men take place. For many women, sexual intercourse is not a question of choice but rather a question of survival. Cultural attitudes and norms leave no place for unmarried or childless women. A woman's fertility and her relationship to her husband will often be the source of her social identity. Moreover, for many women, marriage provides forms of economic and social support that would not be available to them if they were to remain single.^2,8,9

Similar social constructs also dictate that a married woman has little or no power to negotiate the basis upon which her sexual relationship with her husband will take place. Once married, women are usually expected to remain faithful to their husbands but are unable to compel fidelity in return. In many parts of the world, multiple sexual relationships on the part of men are actively condoned or at least regarded as an acceptable practice. The tendency for men to have sexual relationships outside their marriage is reinforced by male migration and mobility common in many developing countries where men leave the village to obtain work elsewhere.¹⁰

Women have little alternative but to accept the risk that sexual intercourse with their husband entails. They usually have little or no means of support for themselves and their children other than by remaining within the marriage. Even if condoms were available to them at an affordable price, most women would not be able to ensure that their husbands used them.

Although it is almost invariably the husband who is the vector of HIV infection for wives, a married woman who is found to be infected with HIV will often be expelled from the family unit by the husband. The husband will then seek a new wife, often a younger woman who is believed to be uninfected and therefore safe and who, in turn, will be exposed to HIV. In some parts of Africa, there have been reports of increased rape of young girls, because they are believed to be free of HIV infection.¹¹

Prostitution is often the only means of support for deserted, separated, divorced or unmarried older women, highlighting once again the close link between economic need and exposure to HIV infection. The term "prostitution" is used in this paper to refer to a wide variety of ways in which women exchange sexual intercourse for cash or other forms of economic support, food, shelter or care.

There has been a serious distortion of the understanding of the way this epidemic has affected women because of the singling out of sex workers by epidemiologists, researchers and national HIV/AIDS programmes as a target or high risk group. The overwhelming majority of women are not sex workers and the largest group of women at high risk of infection are wives. Recent data from Mexico indicate that only 0.8 per cent of all reported AIDS cases have been among sex workers and 9 per cent among housewives.¹² Similar figures can be found in other countries, both developed and developing. In Senegal where the epidemic is still in its infancy (less than 2 percent of the adult population infected), modes of transmission to women in one infectious diseases ward were 20 percent acquired iatrogenically, 30 percent occupationally (sex workers) and 50 per cent had no risk factor other than being a wife.¹³ As the epidemic proceeds, the proportion of wives to all infected women increases and that of sex workers and iatrogenically acquired transmission decreases.

The targeting of sex workers encourages blame, stigma and discrimination not only against them but against all women. It allows others, both the men who infect sex workers and the wives of these men, to deny that they are at risk. However, it has brought some benefits to some sex workers. HIV prevention programmes which have provided counselling, support and services for these women and their children and which ensure women access to affordable, quality condoms have assisted women to adopt condom usage in their work.² In some cases, sex workers have been empowered through collective action and instituted condoms-only policies in their area of operation.

However, programmes of assistance and support to sex workers and regular supplies of affordable, quality condoms are still rare. Furthermore, even where sex workers have adopted condoms in their work place, research shows an endemic failure to use them in their personal relations.² In this, sex workers are no different from the vast majority of women.

Women's access to the cash economy other than through prostitution, is often limited by land ownership or usage regulations, by their limited access to education, training, credit or employment, and through their culturally restricted mobility. The sale of sex is also something that women may engage in from time to time in order to support themselves and their families. For these women, sex work is not an occupation or even a chosen lifestyle, but a pragmatic measure to overcome transitory economic hardship. The risk of HIV transmission to which they are exposed has to be tragically balanced by them against need.

The economic dependency of women increases their risk of exposure to HIV infection in other ways. Lack of access to affordable health care, particularly treatment of sexually transmitted diseases and other conditions that increase susceptibility to HIV, means women are more likely to become infected as a result of sexual intercourse with an infected partner. Low levels of literacy among women means that they are less likely to have access to information about HIV prevention strategies. The social and geographic isolation of women further reduces their ability to protect themselves.⁹

Women are also in a markedly disadvantaged position with respect to confidentiality. The majority of HIV-infected women discover their HIV status during pregnancy or when one of their children becomes sick with AIDS. At this point, any confidentiality protection for the woman disappears as local knowledge of the child's illness leads to open assumptions about the HIV status of the mother. The child's father often refuses to be tested. The woman is frequently held responsible for having transmitted HIV to her children, even though it is usually the husband who introduced HIV to the family unit. The consequences of this lack of control over the disclosure of her HIV status can be blame, social alienation and repudiation by her husband.^2,14

The inability of women to control the factors that place them at risk of HIV infection is compounded by the fact that many societies define the social and cultural identity of women primarily through their role as child- bearers and child rearers. HIV barrier preventive measures, such as the use of condoms, that inhibit women's ability to fulfil their reproductive role are not acceptable. The experience with family planning programmes in the past has highlighted the extent to which the cultural value placed upon reproduction has been an obstacle to change and has demonstrated that women rarely have control over the reproductive process.

The impact of the HIV epidemic on women is not confined to their own risk of being infected with HIV. As the primary carers, women bear the burden of caring for the sick, of holding the family unit together in the face of sickness and death and of coping with the emotional trauma of the dying. They must often forego productive activities or employment opportunities in order to fulfil their duties as care givers. The psychological burdens and responsibilities carried by women in these circumstances are great and will be exacerbated where the women herself is infected with HIV and experiences anxiety about her own health and the future care of her children.¹⁵

These scenarios paint a grim picture of a cycle of dependency in which women are forced into activities that place them at risk of HIV infection and where their ability to free themselves from their dependent role is further reduced by the day to day reality of coping with the consequences of the HIV epidemic. Unless the cycle can be broken, there is every risk that it will be perpetuated, leading to the deaths of increasing numbers of women and men. HIV infection and AIDS have become frightening manifestations of the underlying social and economic inequality of women. Measures to address this inequality must be central to efforts to contain the spread of HIV.

PREVENTION IN WOMEN

 Given the greatly increased vulnerability of women to HIV infection because of their emotional, social, cultural and economic dependency, the task of preventing HIV transmission in women must be recognised as presenting very different challenges to that of preventing infection in men. It is necessary to consider not only whether proposed preventive strategies are inherently effective in reducing transmission risks but also whether the cultural environment is such that women are in a position to implement the preventive strategies. Knowing what has to be done in order to protect oneself from HIV is meaningless if one has no power to control the circumstances that give rise to the risk or in which prevention must occur.

HIV prevention efforts to date have failed to offer women effective and achievable ways of reducing their exposure to transmission risks. The prevention efforts have focused on three issues - a reduction in the number of sexual partners, monogamy or fidelity within relationships and safer sexual practices, in particular the use of condoms, that reduce the likelihood of HIV transmission when exposure occurs. These prevention measures are drawn from men's physique and lifestyle and should be directed at men. As means by which women can protect themselves from HIV, they are hopelessly inadequate.

As a prevention strategy, reducing the number of one's sexual partners is of no help to the many women who have sexual intercourse only with their husband or regular partner. Having only one sexual partner has been a tragic failure as a means of protection against HIV for wives. Even where a woman does have multiple sexual partners, she will often be powerless to change this behaviour because, for the reasons discussed above, her sexual relationships are too often born out of economic need and dependency. Unless these women are offered some other solution to the underlying problem, warnings about the risks involved in multiple sexual relationships, while increasing women's anxiety about HIV, will not in themselves lead to any actual reduction in the risk.^8,9,14

Similarly, HIV prevention messages that emphasise the importance of monogamy within relationships are not of any practical relevance to most women. It is estimated that between 60% and 80% of HIV-infected women in Africa have had sexual intercourse with only their husband.¹⁴ The problem is not that these women are not faithful to their husbands but that they are unable to compel faithfulness in their husbands in return. In a society where it is culturally acceptable for men to have sexual relationships outside marriage but not for women, women have fewer alternatives but to accept these cultural determinants. Their lack of choice is exacerbated once again by economic dependency which provides a powerful disincentive for a woman to leave a sexually unsafe marital relationship.

If one accepts that women are not able to avoid contact with HIV-infected sexual partners, the third prevention strategy which relates to safer sexual practices could still provide significant protection for women. Even here, however, it is evident that the inequality of women within relationships obstructs their ability to protect themselves against HIV. The only barrier method of preventing HIV transmission advocated at present is the male condom. It is an unfortunate biological reality that women must ask men to use condoms and not the other way around. If women have no power to negotiate the basis upon which their sexual relationships take place, they will equally have no power to compel the use of condoms by their male partners nor to negotiate abstinence. Moreover, the use of barrier protection to reduce HIV transmission presents difficulties for many women because of the desire and, in many cases, the cultural imperative to bear children.^9,14,16 Yet again, social and cultural inequality is translated into an increased risk of HIV infection.

HIV prevention measures advocated to date have offered women little or no protection from infection. By placing the lives of women in jeopardy in this way, the failure of HIV prevention programmes to address the needs of women can be seen as a fundamental abuse of human rights. This imbalance in the focus of HIV prevention efforts must be redressed as a matter of urgency.

STRATEGIES FOR CHANGE

 The Philosophical Issues

This epidemic calls for an affirmation of faith that the irrational will not prevail. Refusing to use a condom or to curtail or change sexual behaviour in the face of the fatality of infection is irrational. Traditionally, ideals of rationality and of morality have been drawn from male thought styles and moral consciousness.¹⁷ The character traits traditionally associated with femininity are considered to place ideals of rationality and the objectivity of truth, the male character traits, in jeopardy. Human excellence and virtues are considered to be exemplified in the range of activities and values associated with maleness.

However, this equating of human excellence with male character traits has been placed under attack by the epidemic. So many men seem reluctant to change their lifestyles that this would seem to indicate defects in the concept of masculinity and an impoverishment of male consciousness, especially moral consciousness. It can never be considered to be a virtue or rational to act repeatedly in a situation such as this to place one's own life and that of others in danger. In this case, there is no overriding defence such as patriotism or heroism which might justify such behaviour. Thus, a tension is created between ideals of rationality and moral consciousness on the one hand and cultural norms of maleness on the other. Behaviour which has such devastating consequences not only for the self but for others, women and children in particular, undermines both.

The HIV epidemic thus carries within itself a cultural critique. Cultural ideals of masculinity and femininity in themselves have become responsible for a devastating toll in human lives, especially women's lives. Culturally created norms of masculinity place men at high risk of becoming infected through accepted male lifestyles. Culturally created norms of femininity place women and children at high risk of becoming infected through the same male lifestyles.

The same behaviour can place both men and women at risk of infection since the cultural norms of masculinity and femininity have operated in societies not as descriptive principles of classification but rather as expressions of values. Maleness and male paradigms of rationality are identified with superiority. The feminine becomes one with subjugation and oppression. This systemic sexual, social and economic subjugation denies to women one of the few effective preventive measures for them: the negotiation of safer sexual intercourse.

It is not just that women lack the power to act or the means to influence male behaviour because of these structural gender differences. Women have been stripped of voice and self- esteem. They feel powerless even to talk about safer sexual behaviour and practices with their husbands or regular sexual partners.

The epidemic thus provides an imperative for fundamental cultural and social change. But such changes may not occur in an acceptable time frame: the epidemic also imposes an imperative for urgent action. Approximately 1,500 - 1,700 women are becoming newly infected each day¹⁸ and this number is increasing.

This creates a potential tension between prevention strategies for women directed towards lessening their subordination so that they can take greater control over their lives and prevention strategies that they can use immediately. Addressing strategies that are achievable in the short-term without also addressing the inequalities that have given rise to the risk of infection creates the possibility that the impetus for more fundamental cultural and social change will be defused.¹⁹ Is it possible to overcome the tension between the urgent need for immediate, practical interventions to protect women from HIV infection and the need to address the systemic inequalities that render women vulnerable in the first place?

The experience in recent times with family planning provides a relevant analogy. The pattern has been that women have increasingly taken responsibility for the consequences of sexual relationships, either through the use of contraceptives, overwhelmingly measures to be adopted by women rather than men, or through being the primary carers for children. However, while on one level this has increased women's control over the consequences of sexual activity, it is possible to question whether it has in fact reduced the sexual exploitation of women. It is certainly arguable that the availability of contraceptives for women has merely assisted the sexual exploitation of women since men need no longer be concerned that intercourse will lead to unwanted pregnancies and paternal obligations.

With the HIV epidemic, we see the same philosophical dilemma played out but with vastly-increased stakes. Any effort to redress women's vulnerability to HIV must be recognised as being potentially a two- edged sword. On the one hand, there is an urgent need for HIV prevention measures that women can control because they are unable to compel condom use or monogamy on the part of their male partners. On the other hand, by encouraging women to be the initiators of HIV prevention measures within sexual relationships, there is a risk that we will further entrench the sexual exploitation of women by men who will, once again, be absolved of responsibility for the consequences of their sexual activity. Similarly, other measures aimed at reducing HIV infection risks for women, such as treatment of sexually- transmitted diseases, may only serve to obscure the fact that it is sexual subordination and not poor health that is the primary HIV risk factor for women. It must be clearly understood that the most effective prevention strategy for women is behaviour change in men.

It is critical that the need to reconcile this potential conflict between the long-term and the short-term goals for women be recognised when formulating strategies to respond to HIV/AIDS. Clearly, where there is the possibility of implementing immediate and effective measures to reduce women's risk of HIV exposure, it would be morally reprehensible to withhold these measures in the interests of furthering the long term objective of achieving the required cultural and social changes. However, the important point to bear in mind is that the two objectives need not necessarily be in conflict. Thus, the two goals of improving the status of women and protecting women against HIV are entirely consistent, as long as HIV/AIDS policy is properly informed by an understanding of the philosophical issues that underpin it.

It is important that these concerns guide HIV prevention efforts towards interventions that lead to the greater rather than the lesser empowerment of women. This could be done, for example, by interventions to assist women collectively to develop strategies to take greater control over sexual relationships or by increasing the role of community- based organisations in HIV prevention since these groups are more accessible to women. HIV/AIDS education programmes can focus on ways in which women can themselves exercise control rather than on interventions that require little active participation by women. Measures that address the legal and economic inequality of women can provide real and immediate prospects for reducing women's risk of infection because they give women autonomy, alternatives to dependent relationships. Initiatives such as these not only offer the best prospects for the effective containment of HIV both immediately and in the long term but also assist in addressing the fundamental structural inequalities that have denied women control over their lives.

 Research and National Policy Strategies

HIV infection risks for women necessitate a re-thinking of HIV research strategies, both biomedical and social. Because women are often unable to control the basis upon which their sexual relationships take place, research efforts directed towards developing barrier protection methods that do not rely upon the cooperation of men have the potential to offer women immediate and effective protection against HIV infection.

The primary barrier protection currently available -- the male condom -- clearly does not meet this need and it is notable how little medical research has been devoted to HIV prevention methods that women can use. The proposed female condom has little appeal for women and has limited application where protection must be surreptitious. Little has been done to investigate whether other devices, such as a modified diaphragm, may also offer protection to women from HIV transmission. Diaphragms have been thought to be as effective as condoms in protecting women from gonorrhoea and other sexually transmitted diseases. There is still no form of chemical barrier protection, such as a virucide, available to women. These are all matters that should be an urgent priority of research.¹⁶

It is also important that research assist in accommodating the social and cultural factors that otherwise would prevent women from protecting themselves against HIV. This could be done, for example, by working to develop a virucide that does not at the same time prevent contraception. In this way, practical measures could be put in place to ensure that the desire or social imperative for women to have children does not also expose them to an increased risk of HIV infection.^8,16,19

In addition to effective barrier protection, there are other interventions that can protect women against HIV infection. Foremost among these is effective treatment of sexually transmitted diseases and other genital conditions which increase the risk of HIV transmission. In relation to iatrogenically- acquired HIV, improved sterilisation procedures, blood screening, the use of blood substitutes and measures to decrease the likelihood that a woman will require a blood transfusion during childbirth could also be effective in reducing risk factors.⁹

The fact that these measures have not yet been given a high priority in HIV strategies indicates the extent to which those strategies have failed to place women at the centre of the analysis, that is, to give adequate consideration to the concerns and needs of women in the development of prevention strategies.

Pregnant women are frequently advocated and used as sentinel groups for determining HIV infection rates in the general population. The need to find a proper balance among surveillance, prevention and other HIV programmes is noted here but will not be addressed.

For many, men and women, unauthorised delinked testing is considered to be an invasion of bodily integrity. The testing of pregnant women without consent and without disclosure to them of their results is justified by those responsible on the grounds of the public health need to monitor the spread of the virus. This might be a justification of this non-democratic policy if there were no other equally cost- effective way of monitoring spread. There are, however, studies indicating that data with acceptable degrees of confidence can be obtained if such testing is voluntary. If women are tested, they have a right to know the results. This is a general right but particularly applicable to women since too many decisions relating to their own life, to child bearing and to the future of their children might be made differently on the basis of this knowledge. Voluntary testing can both respect women's right to knowledge of their infection and provide the required epidemiological data.

Women are at the heart of this epidemic, not as transmitters of the virus, as they are so often depicted, but as bearers of its consequences in families and communities.²⁰ It is, therefore, critical that their voices be heard and that they be actively involved in all policy discussions and in programme development at all levels. Women's experiences will be the primary source of information about social impact and knowledge of their foregone productive activities can provide insights into future socio-economic consequences. They will cushion the emotional trauma, social strain and economic disruption of the epidemic and so are of decisive importance to effective responses to the epidemic.

 The International HIV Policy Framework

Just as HIV prevention strategies to date have neglected the rights and needs of women, so too has the response of the international community failed to recognise the source of women's vulnerability to HIV and the measures necessary to overcome this vulnerability.

Since 1987, the World Health Organisation, through its Global Programme on AIDS, has issued 18 consensus statements on specific issues surrounding the HIV epidemic. Only one of these statements -- that dealing with the health of mothers and children -- has dealt specifically with issues affecting women. However, it limits its attention to women's role as mothers and, even in this context, focuses more on the ramifications for families and children of HIV infection in women than on the consequences for women themselves.²¹ Statements have been issued dealing with the issues of prostitution and sexually-transmitted diseases. However, any consideration of these issues will necessarily be inadequate for women if it fails to adopt a woman-centred analysis that identifies how the sexual and economic subordination of women is the primary reason why women must run the risk of exposure to HIV. None of the World Health Organisation statements has adopted such an analysis.

The Paris Declaration on Women, Children and AIDS issued on 30 November 1989 reinforces the view that women's issues in relation to HIV/AIDS are essentially those that also affect children.²² It emphasises the importance of prevention and support programmes that are directed specifically at women but does not state why women require independent consideration and analysis in the context of HIV and, therefore, what must change if the factors that place women at risk are to be overcome.²³ Similarly, the World Health Assembly resolution adopted on 13 May 1988 on the Avoidance of Discrimination in relation to HIV-infected People and People with AIDS, while recognising that respect for the human rights of people with HIV is vital to the success of HIV prevention programmes, fails to deal with the broader discrimination and human rights issues that are critical to a proper understanding of why the risks faced by women as a result of the HIV epidemic are so grave.²⁴

It is only in the last two years that there has been an emerging recognition within some areas of the international community of the inter- relationship between the status of women and women's risk of exposure to HIV. In July 1989, the Centre for Human Rights conducted an International Consultation on AIDS and Human Rights. The Report resulting from this consultation includes a statement that special attention should be given to the human rights of women. It notes that there are "certain factors relating to the reproductive role of women and their subordinate position in society which render them particularly vulnerable to infection."²⁵ Women's lack of equal access to education, health, training, independent income, property and legal rights was acknowledged to affect both their access to knowledge about HIV and their ability to protect themselves from infection. This theme was taken up by the Committee for the Elimination of Discrimination Against Women in its 9th session (1990) at which a recommendation was passed that stated, among other things, that national programmes to combat AIDS should give special attention to "the factors relating to the reproductive role of women and their subordinate position in some societies which make them especially vulnerable to HIV infection".²⁶

The United Nations Development Programme has prepared a set of policy principles to assist and guide UNDP policy formulation relating to programming and personnel policies. These include the principle that "the power imbalances in interpersonal relationships and in society which create women's subordination must change if women are to be able to protect themselves from HIV infection and its consequences". Within the UNDP policy framework, priority has been given to:

"measures to address women's needs for prevention, care, support and access to treatment, to reduce discrimination and trauma, to strengthen their ability to protect themselves from infection and to assist affected women to meet their child rearing, domestic and economic responsibilities." ²⁷

In November 1990, a World Health Organisation consultation on women was called to consider research priorities for women and HIV/AIDS. The meeting recognised the need to redress the neglect of gender specificity in existing research on HIV/AIDS and to focus on research that will contribute to the empowerment of women. Among the specific issues allocated research priority were the cultural factors that inhibit behaviour changes necessary to enable women to protect themselves against HIV, the impact of different contraceptive methods on HIV transmission to women, the diagnosis and treatment of sexually- transmitted diseases in women and the impact of geographical mobility on changing sexual patterns and HIV transmission risks for women. ²⁸

These initiatives are an important first step towards an international policy response to HIV/AIDS that will give proper weight to the rights and needs of women, but the urgency of the need for action must be communicated. We are now a decade into the epidemic and hundreds of thousands of women have already died of AIDS. Millions more will die because of the inadequacy to date of the international response to the risk of HIV infection in women. Women's sense of urgency must be communicated to the international community.

Human Rights and the HIV Epidemic

Prevention strategies will only ever be effective in protecting women from the effects of HIV if they embrace a recognition and active promotion of the human rights of women. Human rights can and must be used pro-actively in this context. They do not merely provide the backdrop against which HIV/AIDS strategies should be planned, but rather are a powerful tool that can be actively used to enable women to protect themselves against HIV. The urgent and critical need to improve the social and economic status of women and thereby to overcome their vulnerability to HIV means that human rights considerations in this context must look beyond immediate concerns such as discrimination against people with HIV and access to health care to address the fundamentally unequal social and economic position of women.

The HIV epidemic has already launched a savage assault on the human rights of women. Foremost among these is the right to life which is being denied women who are forced, by reason of their subordination, to be exposed to HIV infection and who are powerless to adopt any measures to avert death from AIDS. The failure on the part of governments and the international community to take any adequate steps to enable women to protect themselves against HIV infection represents a profound denial of the value of the lives of women. Equally, women have been denied the right to health and even the right of access to health care, further increasing their vulnerability to HIV. They have been denied the right of access to education and to economic independence, both of which impact critically upon abuse of the human rights of women.

Women infected with HIV suffer further denials of human rights through being deprived of the right to bear children and the right of freedom of reproductive choice. Their right to privacy is stripped from them when their own HIV status becomes known because of the illness of their children, when they are denounced as being "responsible" for having transmitted HIV infection to an unborn child, or when they are rejected by their husbands because they are infected with HIV.

The right to freedom from discrimination has a powerful meaning for women who are blamed by men for the consequences of HIV infection. Women who are powerless to avoid the risk of exposure to HIV, whether through sexual contact with their husbands, prostitution or other means, are nonetheless blamed for having been a vector of HIV infection and suffer stigmatisation, rejection and expulsion from family and community structures. The failure to recognise the rights of these women to protection against discrimination, in addition to being morally indefensible, has further compounded the inability of women to protect themselves against the effects of HIV.

Women also have a right to knowledge -- a right which has been transgressed in a number of ways in the course of the HIV epidemic. The denial of this right is linked directly to cultural assumptions about who best exercises rational deliberation, to women's lack of participation in decisions affecting their lives and to women's social subjugation. The recognition of women's right to knowledge is essential to their informed choice and action. A women who knows about patterns of infectivity in HIV infected people, for example, may be able to devise strategies to avoid sexual intercourse with her husband during periods when the infection risk is highest even though she may not be able to achieve long-term sexual abstinence. Similarly, it is a woman's right to know the facts about perinatal HIV transmission through breastfeeding so that she can make an informed choice about breastfeeding, weighing the risk of HIV transmission against other factors, such as the threat to the child's health of not breastfeeding.

The human rights abuses experienced by women as a result of the HIV epidemic and which continue to place women's lives at risk must be addressed at a fundamental structural level if the international community is to fulfil its moral, ethical and legal obligations to women. The changes required are far- reaching. They include changes to cultural values and expectations that deny women the power to control their own sexual relationships, changes to the law and culture that deny women the same economic rights and opportunities as men, and changes to the role of women within their communities in order to give recognition to women's individual identity and consciousness. These changes are the minimum that is require if human rights for women are to be a reality.

The nexus of women and the HIV epidemic provide a compelling demonstration of how the philosophical underpinnings of human rights are central to an effective policy response and have a direct and immediate impact upon policy outcomes. Thus, the urgent need to act to protect women against HIV demands that policy-makers move human rights concerns to the top of their political priority list. Unless this priority is recognised, efforts to contain the spread of HIV among women are bound to fail.

 The Role of Law

The inescapable link between human rights and effective HIV/AIDS prevention for women points to the role of law in bringing about the changes necessary to enable women to protect themselves against HIV. The law has always been one of the principal mechanisms by which human rights have been given direct recognition both through international law and through domestic human rights codes and charters. A rights- focused analysis of the factors that render women vulnerable to HIV immediately demonstrates how human rights instruments can be used directly in HIV/AIDS strategies for women. In addition, the law can and should be used to promote and protect human rights indirectly by redressing structural inequalities and injustices in a way that actively seeks to bring about social change.

The Direct Role of Law

In its efforts to contain the spread of HIV, the international community has a responsibility to utilise fully the human rights protection afforded by existing international law. If used creatively and appropriately, international instruments offer wide scope to promote and reinforce the human rights of women that have been so seriously affected by the HIV epidemic. Among the instruments that could be used in this context are the United Nations Charter of 1945, the Universal Declaration of Human Rights, the International Covenant on Civil and Political Rights, and the International Covenant on Economic, Social and Cultural Rights. There are also a number of regional treaties, such as the African Charter of Human Rights and People's Rights and the European Convention on Human Rights. These instruments explicitly recognise rights such as the right to life, the right to privacy and the right to bear children, which go to the heart of the HIV epidemic as it affects women.

More must be done to give formal legal effect to these international instruments through the domestic law of each country. This has been one area of notable neglect in international law, and one where immediate and tangible recognition of human rights could be implemented by the passage of appropriate domestic law enactments.

In countries where human rights codes and charters already exist as part of the domestic law, there is debate as to the extent to which these instruments are of practical effect in the context of the epidemic, either in preventing human rights abuses or in providing remedies in the event that discrimination or a breach of rights occurs. As with any legal remedy, issues of accessibility and cost may mean that legal protection that is available in theory is not available in practice. In developing countries, in particular, practical access to the legal system is likely to be non-existent for all but a very small number of people.

Nonetheless, the symbolic effect of explicit and legally-enforceable human rights protection should not be under-estimated. The experience in Canada, for example, where the Canadian Charter of Rights and Freedoms has been in force only since 1982 has shown that these legal instruments can have an effect upon the philosophical orientation of government policy, if only by introducing the language of human rights into the policy debate. It may be wrong to believe that human rights codes by themselves can provide adequate protection of individual rights, but equally it would be wrong to dismiss them as being entirely ineffectual.

The Indirect Role of Law

The notion of the law as an instrument of social and behavioral change has been the subject of a long and controversial jurisprudential debate. There are countless examples of how the law has been ineffectual in changing social behaviour either because it has been ignored or because it has been selectively enforced. The issues of rape and domestic violence are two such examples that are particularly relevant to women. Despite this experience, however, there is reason to believe that a creative use of the law, based on an appreciation of the complex social and cultural dynamics that are involved, may be able to bring about changes in social attitudes and practices that represent an abuse of rights.

What could this mean, in practical terms, for strategies to protect women from the effects of HIV? There is no universally applicable answer to this question for effective strategies must, by their nature, be culturally-specific. However, there are a number of areas where the role of law could usefully be explored.

First, there is the interaction between the law and economic dependency. In many developing countries, the law upholds the economic dependence of women through land ownership, marital property laws and credit regulations which deny women the right to independent ownership of property or through laws which prohibit women access to certain forms of paid employment or to financial credit.²⁹ Laws such as these effectively leave women only two means of economic support - - marriage and prostitution. The removal of these legal barriers to economic independence may be a first step towards enabling women to control the circumstances that give rise to the HIV transmission risks. It could permit women access to the cash economy other than through prostitution which, in turn, could facilitate access to better health care, for example, for sexually transmitted diseases. Within the marital relationship, measures that reduce the economic dependence of the wife may also assist in increasing her power to negotiate over matters such as condom use and faithfulness on the part of her husband or partner.

Second, the law can be used to enhance the status of women within marriage or other sexual relationships. In many countries, for example, the absence of any criminal sanctions attaching to rape within marriage reinforces attitudes about the sexual subordination of women. By enacting laws that recognise the rights of women to make their own decisions about sexual relationships, the ability of women to protect themselves against the risks of HIV transmission within sexual relationships will also be increased. Similarly, cultural traditions embodied in law and which encourage or condone activities that may spread HIV can be the subject of legal reform. In such cases, changes to the law provide necessary support and reinforcement for other efforts to change cultural practices.

Third, the law can be used to express an appropriate policy response to activities, such as unprotected sexual intercourse, prostitution and injection drug use, that increase the risk of HIV transmission. Depending upon the context, the appropriate response will vary. For women who are already isolated from access to information, prevention measures and support, laws that seek to criminalise or otherwise regulate the behaviour that places them at risk of HIV infection will only entrench the alienation they already experience. A legal regime that is coercive and unresponsive to the powerlessness of women will inevitably be ineffective. If women are unable to exercise control over the factors that force them to engage in prostitution, for example, punishment will certainly not act as a deterrent and may actively impede efforts to give these women access to appropriate education and support.

On the other hand, however, women's interests may be protected by laws that seek to change the behaviour of men. This has been shown to be possible in parts of southern Africa where the introduction of laws requiring men to pay maintenance for children they father has led to marked changes in men's sexual behaviour in that they have fathered fewer children. By attaching legal obligations to certain forms of behaviour, these patterns of behaviour have changed. For women whose risk of exposure to HIV results directly from patterns of sexual behaviour controlled by men, the law can be used constructively to confront and change the cultural values and behaviours that place women at risk.

Finally, the law can be used to provide positive incentives for measures that assist in containing HIV. For women, this may mean affirmative action programmes that require the participation of minimum numbers of women in the process of policy formulation, either in relation to HIV/AIDS specifically or more general matters, such as economic assistance and health care. Economic incentives can be legislated in the form of tax concessions or training programmes to encourage a greater participation by women in the workforce. Such initiatives, by enhancing the economic and social status of women, would contribute directly to the ability of women to protect themselves against HIV.

CONCLUSION

 The HIV epidemic has taken the sexual, economic and cultural subordination of women and translated it into a death sentence for women. The virus has attacked the fundamental human rights of women, leaving them powerless to protect themselves against infection. The international response to the epidemic has compounded this abuse of rights by failing to recognise that the disadvantaged status of women is the cause of their vulnerability to HIV and by refusing to permit the rights and needs of women to play a part in shaping HIV strategies.

While millions of women are already condemned to die of AIDS, the lives of many more can be saved if immediate action is taken to address the human rights violations perpetrated on women by the HIV epidemic. Strategies that permit women to exercise control themselves over factors that place them at risk of HIV infection are critical. Mechanisms must be established to uphold human rights for women as a reality and to impose sanctions for abuses of rights. Laws must be put in place to change the structural factors that deny women equal status with men.

These changes require a fundamental reorientation of the values, beliefs and laws that shape the perception and role of women within relationships, families and societies. The challenge is great, but so too is the moral imperative that demands urgent action.

ENDNOTES

1. Chin, James. Current and Future Dimensions of the HIV/AIDS Pandemic in Women and Children. Lancet 1990; 336:221-224.

2. Sabatier, Renee. Women and AIDS: Strategies for the Future. Proceedings of the meeting on Women and HIV/AIDS. CIDA, Ottawa, Canada, 1990.

3. Diaz, F.G. and Rodolfo N. Morales. HIV/AIDS in Mexico. AIDS Action. AHRTAG newsletter, issue 10, April 1990.

4. World Health Organization. The Global AIDS Situation Update. WHO, Geneva, 1990.

5. Narain, Dr. Jai. Caribbean, AIDS Action. AHRTAG newsletter, issue 10, April 1990.

6. United Nations Division for the Advancement of Women. Interrelationships Between the Status of Women and HIV- Epidemic: A Review of Published Literature. Paper prepared for the Expert Group Meeting on Women and HIV/AIDS and the Role of National Machinery for the Advancement of Women. Vienna, 24-28 September 1990.

7. Center for Women Policy Studies. Memorandum on Federal Women and AIDS Legislation. Washington, D.C., 6 March 1991.

8. Carovano, Kathryn. More Than Mothers and Whores: Redefining the AIDS Prevention Needs of Women. International Journal of Health Services 1991; 21:131-142.

9. Panos Institute. Triple Jeopardy: Women and AIDS. Panos Publications Ltd, 1990.

10. Reid, Elizabeth. Young Women and the HIV Epidemic. Development Journal of SID, 1990:1, February 1990.

11. Jochelson, Karen, Monyaola Mothibeli and Jean-Patrick Leger. Human Immunodeficiency Virus and Migrant Labor in South Africa. International Journal of Health Services 1991; 21:157- 173.

12. Akeroyd, Anne. Sociocultural Aspects of AIDS in Africa: Topics, Methods and Some Lacunae. Paper presented at the Conference on 'AIDS in Africa and the Caribbean: The Documentation of an Epidemic'. Columbia University, New York, 5 November 1990.

13. Uhlig, Mark. Prostitutes Join Mexico AIDS Fight. New York Times, 10 April 1991.

14. Personal communication, Dr. A.M. Coll Seck, Dakar, Senegal.

15. Reid, Elizabeth. Placing Women at the Centre of the Analysis. Proceedings of the meeting on Women and HIV/AIDS. CIDA, Ottawa, Canada, 1990.

16. Hankins, Catherine. Psychological and Social Consequences of HIV Infection in Mothers and Children. Proceedings of the International Conference on the Implications of AIDS for Mothers and Children, Paris, 27-30 November 1989.

17. Stein, Zena. HIV Prevention: The Need for Methods Women Can Use. American Journal of Public Health; 1990:460-462.

18. Lloyd, Genevieve. The Man of Reason: `Male' and `Female' in Western Philosophy. Methuen, London, 1984.

19. This figure is derived from WHO estimates of 4,000 new infections each day.

20. Hankins, Catherine. Women and AIDS: Strategies for the Future. Proceedings of the meeting on Women and HIV/AIDS. CIDA, Ottawa, Canada, 1990.

21. Bailey, Michael. Report of the Fifth International Conference on AIDS in Africa. Save the Children Fund, United Kingdom, 1990.

22. World Health Organization, Global Programme on AIDS. Statement on health of mothers and children in the context of HIV/AIDS, Geneva, November 1989.

23. Paris Declaration on Women, Children and AIDS, 30 November 1989.

24. Reid, Elizabeth. UNDP Statement. Proceedings of the International Conference on the Implications of AIDS for Mothers and Children, Paris, 27-30 November 1989.

25. World Health Assembly Resolution on the Avoidance of Discrimination in relation to HIV- infected People and People with AIDS, Geneva, 13 May 1988.

26. Centre for Human Rights. Report of an International Consultation on AIDS and Human Rights. Geneva, 26-29 July 1989.

27. Committee for the Elimination of Discrimination Against Women. General Recommendation no. 15 on the Avoidance of Discrimination Against Women in National Strategies for the Prevention and Control of Acquired Immunodeficiency Syndrome (AIDS). Report of the 9th Session (1990).

28. United Nations Development Programme, Policy Framework for UNDP's Response to the HIV/AIDS Epidemic, May 1990.

29. World Health Organization, Global Programme on AIDS. Report of the Meeting on Research Priorities Relating to Women and HIV/AIDS, Geneva, 19-20 November 1990.

30. Longwe, Sara Hlupekile and Roy Clarke. Proposed Methodology for Combating Women's Subordination as a Means Towards Improved AIDS Prevention and Control. Paper prepared for the Expert Group Meeting on Women and HIV/AIDS and the Role of National Machinery for the Advancement of Women. Vienna, 24-28 September 1990.

 Acknowledgements

This paper was prepared for the International Workshop on "AIDS: A Question of Rights and Humanity", International Court of Justice, The Hague, May 1991.

Biographical Note

Julie Hamblin is a partner with Ebsworth & Ebsworth in Sydney, Australia, and specializes in legal and ethical aspects of health policy. She has worked on HIV law and policy for many years in Australia, North America, Asia, Africa and Eastern Europe and is the author of texts on HIV law in Australia and Canada, as well as articles on a range of other health law issues, including confidentiality and the ethics of health resource allocation. She is a consultant to the United Nations Development Programme on legal, ethical and human rights aspects of the response to the HIV epidemic in developing countries.

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.

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