Issues Paper No. 12

YOUNG WOMEN: SILENCE, SUSCEPTIBILITY AND THE HIV EPIDEMIC
Elizabeth Reid and Michael Bailey

TABLE OF CONTENTS

Gender as an independent variable for HIV infection
Silence
Age as an independent variable for HIV infection
Anatomy as destiny?
Situational factors
The unheard scream
The prophetic voice
An action agenda
Breaking the silence
Changing the operational research agenda
Sanctuaries
Sanctions
Safety
Restructuring gender
The circle of the dance
References
Acknowledgements
Biographical Note

 Gender as an independent variable for HIV infection

 There is a critical reality about the HIV epidemic, which is yet to be grasped. It can be glimpsed through the following three assertions.

 First, women are increasingly becoming infected with HIV. In most of the third world, there are as many, or more, infected women as there are infected men1. These women are wives, daughters and grandmothers, sisters, aunts and nieces.

 Second, women are becoming infected at a significantly younger age than men. In areas where the epidemic is newly emerging and in areas where it is deeper, the same pattern is recorded: on average, women become infected five to ten years earlier than men.

 Third, proportionally more girls and young women in their teens and early twenties are becoming infected than women in any other age group. A possible exception is post-menopausal women who also seem to be particularly susceptible to HIV infection.

 The response to each of these assertions must be to ask why this is occurring.

 The implications are that it is plausible that women become infected more easily than men, possibly at all ages and most definitely when they are in their teens and early twenties and after menopause. There appears to be a biological, immunological and/or virological susceptibility in women which changes with age.

Silence

 The first diagnosed case of AIDS in a women was recorded as early as 1982, in the first year of the known epidemic. In 1984, the first joint US/Belgian mission to Zaire clinically diagnosed virtually as many women with AIDS as men. Nevertheless the characterization of the epidemic by gender (male) and sexual orientation (homosexual) remained dominant.

 In 1986 two critical studies, disaggregated by gender and age, became available. One from the University Teaching Hospital in Lusaka, Zambia, showed one in ten women attending the ante-natal clinic infected with HIV and, amongst the hospital patients: 

  • one in three men aged 30 to 35 were infected;
  • one in four women aged 20 to 25 were infected. 

The other study reported the first 500 cases of AIDS diagnosed in Mama Yemo Hospital, Zaire (Figure 1)2. This data set was also remarkable in showing: 

  • as many women as men were diagnosed with AIDS;
  • the diagnosed women were on average ten years younger than the men;
  • there was a sharp peak in AIDS cases in younger women, 20 to 29 years old.

 These data were deeply disturbing yet they did not elicit a particular concern about women and HIV at the international level nor did they challenge and change the dominant discourse on the epidemic and thus the responses3.

Ten years after the first woman was diagnosed, an estimated three and a half million women were infected, the vast majority through sexual transmission. For most women, the major risk factor for HIV infection is being married4,5,6. Each day a further three thousand women become infected and five hundred infected women die. Most infected women are between 15 and 35 years old.

Age as an independent variable for HIV infection

 The profile of extremely high rates of HIV infection or AIDS in young women, first seen in the 1986 Kinshasa data set, reappears time and again in later data sets, in newly emerging epidemics, Thailand and Myanmar for example (Figures 2 and 3), in established epidemics, Uganda for example (Figure 4) and in industrialized countries, Europe for example (Figure 5)7

These data sets dramatically indicate that the patterns are everywhere and over time similar: 

  • the prevalence of HIV infection is highest in young women aged 15 to 25 and peaks in men five to ten years later in the 25 to 35 age groups; and 
  • among women, the infection profile by age has a precipitous peak in the age group 15 to 20 and declines for older pre-menopausal age groups.

 Other studies8,9,10 are providing dramatic illustration of the vulnerability of young women when they become sexually active early in life. Anne Chao's data from Rwanda (Figure 6) show that the younger the age of first pregnancy or first sexual intercourse the higher the incidence of HIV infection: over 25 per cent of young women pregnant at age 17 or younger are infected and about 17 per cent of those 17 or younger at first sexual intercourse are infected. Infection rates decrease sharply in both categories in later age groups. 

It is our contention that the extent of HIV infection in young girls in their teens or early twenties shown in these data sets will be affected by all the contributory factors currently identified in the literature as increasing the rates of infection in women and men but cannot be adequately accounted for by these factors, even in the aggregate. In the case of young women there would seem to be other influential factors. These need to be identified. 

The factors identified in the literature include the incidence of sexually transmitted infections (STIs)11,12, frequency of intercourse13, sexual practices14, and male/female age differences in sexual relationships15,16. To these may also be added women's nutritional status17, and the presence of lesions, inflammation and scarification in the female genital tract from causes other than STIs18 as well as women's socio-economic status16

These factors may well be contributing factors but cannot be the complete explanation. Individually they are as true or more true of older, pre-menopausal women or young men in the same age group. However, these groups do not exhibit the same extent of infection. Frequency of intercourse is not adequate as an explanatory variable since young women have become infected with HIV during their first act of intercourse19 and with infrequent sexual activity20. Infected young women have not been shown to be more sexually active than uninfected young women in their age group, than older women or than young men20

Similarly, sexual practices which cause lesions or inflammations of the genital tract are not usually practised by young women. These are more prevalent after the birth of the first child21

Nutritional status is not a sufficient variable since it is poor in all women of childbearing age. Furthermore, the social and economic conditions through which women enter sex work apply as much or more to women in the age group 20 to 29 as in the age group 10 to 19. 

When social explanations are offered for this pattern of high infection rates in young women, they are usually offered in terms of older men having sexual intercourse, consensually or otherwise, with younger women15. Whilst this and all the above are clearly contributory factors, we contend that they are insufficient, even in the aggregate, to explain the steepness of the infection profile in girls and young women.

Anatomy as destiny?

 The extent of the early and easy infection of young women, exhibited in the figures above, indicates a particular susceptibility to infection in this group. This susceptibility cannot be adequately explained by the cultural, social or economic conditions under which young women have intercourse, nor by the presence of infections and lesions, frequency of intercourse or nutritional status. The possibility of physiological vulnerability as a contributory factor must be explored urgently. 

A series of questions can be posed.

Is the intact female genital tract in young women less efficient as a barrier to virus penetration than that of older women and if so why? 

A young woman's genital tract is not mature at the time she begins to menstruate. The mucous membrane changes from being a thin single layer of cells to a thick multi-layer wall. This transition is often not completed until late teens or early twenties. It is conceivable therefore that the intact but immature genital tract surface in a young women is less efficient as a barrier to HIV than the mature genital tract of older women. In post-menopausal women, the mucous membrane becomes thinner and so it is also possible that the genital tract wall, even when intact, is less efficient as a barrier.

 Is mucous production in young women less proficient than in older women?

Mucus in the female genital tract has four relevant roles. It acts as a physical barrier, separating semen and other material from the vaginal and cervical walls. It is a lubricant, protecting the surface of the vagina from abrasion during intercourse. It flushes the cervix and vagina in the same way that mucus flushes the respiratory tract, removing foreign material. It has an immune function,22 that is, mucus contains cells of a separate immune system whose function is to activate the immune responses of the cells in the vaginal and cervical surfaces.

 If mucous production in young women, and post-menopausal women, is less proficient than in older pre-menopausal women so too will these protective roles be less effective. There will be less of a barrier to viral penetration. It will provide less assistance in minimizing irritation and tearing of the genital membranes and so facilitate viral entry.23

 It is known that the hormonal fluctuations of the menstrual cycle influence the production of vaginal and cervical secretions24. Secretion is most prolific at mid-menstrual cycle and so, at other times of the cycle of young women whose mucous secretion is not fully developed, may be inadequate. This could also be true of young women whose menstrual cycle is irregular.

 Does the presence of cervical ectopy in young sexually-active women make them more prone to HIV infection?

 The cervix has been postulated as the most likely site of HIV infection in women25. Any erosion of the cervix or damage to it would increase the likelihood of virus entry. An association between HIV infection and the incidence of cervical ectopy has been reported20,26 but the causal relationships need to be clarified26. In particular it urgently needs to be determined whether the presence of cervical ectopy disposes women to HIV infection. There is already considerable evidence that disproportionately more young sexually active women contract human papilloma virus and herpes simplex virus infections and that human papilloma virus infection of the cervix is a major cause of the cellular changes which lead to cervical ectopy and to cervical cancer. Furthermore, it has been known since at least 1950 that the incidence of cervical cancer is higher in young women who began sexual activity or were married before the age of 1727.

 Do the hormonal and physiological changes at menopause increase the vulnerability of older women to infection?

 There is some case evidence that the efficacy of transmission in post-menopausal women is higher than in pre-menopausal women28. However, epidemiological evidence is lacking since the female population most usually tested (commercial sex workers and pregnant women) do not include them. It could be anticipated that post-menopausal infected women would usually die without diagnosis or treatment.

 The biology of women's genital tract is poorly understood. We know more about the increased protection from HIV infection offered by intact genital mucosae in monkeys29. The above analysis, however, does show the urgency of developing an international commitment to providing answers to these questions.

Situational factors

 The influence on vulnerability to infection of these biologically based differences may be amplified by the circumstances and situations in which young women have sexual intercourse.

 Non-consensual, hurried or frequent intercourse may inhibit mucous production and the relaxation of the vaginal musculature both of which would increase the likelihood of genital trauma. A lack of control over the circumstances in which intercourse occurs may increase the frequency of intercourse and lower the age at which sexual activity begins. A lack of access to acceptable health services may leave infections and lesions untreated. Malnutrition not only inhibits the production of mucus but also slows the healing process and depresses the immune system30. Cultural norms may favour early pregnancy, discourage the use of condoms or facilitate intercourse with older men who are more likely to be infected.

The unheard scream

 These data show that girls and young women are excessively vulnerable to HIV infection. When will the agony of these young infected women press upon us? Anecdotal evidence from one geographic area suggests that one half of all young women there aged 15 to 19 years are infected. In other areas, the figure is one in three or one in four8.

 When will the pain and anger of these young women goad us to action? Or will we be capable of ignoring this too? There is the possibility of a disturbing parallel in the acceptance throughout the world of the loss of women's lives during pregnancy and childbirth. In Africa, as many as one women in 21 die in the process of bearing a child. In Asia, it is one in 54; in Latin America and the Caribbean, one in 73. The tragedy and suffering of these women is too often unremarked and their deaths unmarked31. These deaths are needless32.

 The prophetic voice

 The growing numbers of women infected and dying bring a deep sadness but must sound an urgent alarm. We must be aware of what the world will lose through the deaths of so many young, and older, women.

Because we live in sharply gender-divided worlds, the impact of women's deaths is different from that of men. Most, if not all, cultures raise girls differently from boys and treat women differently from men. As a result, women bring to daily life different qualities from men. Women tend to be the guardians of compassion rather than ambition, of connectedness rather than control, of healing rather than harming, of closeness rather than conquest, of mercy rather than judgement. They make possible the circle of the dance as an alternative to the ladder.

 Women are the creators of new life, the caretakers of daily life and the custodians and transmitters of community norms and social values. However, in some parts of the world, one third or one half or more of all women are infected. How will the loss be borne?

 Cabbage soup, writes Helène Cixous, can only warm us passingly. To live, we need the presence of women who pay attention to life.33 Yet even soup is usually prepared by women. It is not solely a matter of appeasing hunger, of providing shelter, of resolving conflict, of raising children, of tending fields. Women bring much more to life.

An action agenda

 We must respond to this tragedy. There are two essential elements in the immediate strategy. First, the silence around the infection of young women must be challenged at every level: individuals, families, communities and organizations, nations and internationally. Second, a new research agenda must be established. The established hypotheses and assumptions about the nature of the epidemic, about research priorities and about gender must be set aside so that the research agenda can be reconceptualized. To do this, those responsible for the agenda must also change. The critically important and insightful work of Nancy Alexander25, Bruce Forrest22, Elizabeth Duncan23, Zena Stein34 and others must be acknowledged, valued and acted upon.

 These two elements are necessary but not sufficient conditions for an effective strategy to protect girls and young women from being infected through their sexual and reproductive activities. An effective strategy will need to address all the factors which directly contribute to their susceptibility to infection. It must also address, in the short term wherever possible but certainly in the longer term, the indirect contributory factors.35 There will be many elements in such an action agenda. Here we identify only a few to stimulate thought and discussion.

 Neither the immediate strategy nor the broader response will be effective without political will and pressure for change. Politicians, community leaders and parents will need the courage to speak out to save these lives, to save the continuity of life. We are all responsible.

Breaking the silence

 The silence surrounding the infection of young women must be broken. Girls and young women must be able to speak out, to cease to feel silenced or powerless to change what happens to them. Others, too, must speak out.

 It is critical that parents, communities and nations realize that, unless they face this issue urgently, not only will many young women be lost but so, too, will their children and their children's children. Clans and communities will cease to exist and, with them, their ancestors. Pregnancy, birth and nurturing, the continuity of life will all be placed in jeopardy.

 If the silence is broken and young infected women begin to speak out and tell their stories, we must have already in place effective programmes to prevent their younger sisters from also becoming infected. If not, the breaking of the silence will add the agony of younger girls who will now know that they face a future of possible, perhaps almost certain, infection, to the agony of the young women already infected. Young girls will feel powerless to avoid the fate of their mothers and older sisters.

 The psychological trauma of such a situation is virtually beyond comprehension. If we do not succeed in developing an effective, timely agenda for action, the insight and analysis which demands that the silence be broken will become a curse.

Changing the operational research agenda

 The mere possibility of a physiological basis to the susceptibility of infection in young women should provide the impetus for an urgent and significant research effort. Answers to questions about the female genital tract identified here, as well as others, must be found so that protective programmes can be developed.

 Those who are undertaking relevant research on the female, and male, genital tracts must be supported and their findings widely and quickly disseminated. A focused effort must be made to bring together the observers of the reality and those undertaking such research and analyses together with research funders so that priorities in the bioscientific research agenda can be reset and financial support be immediately available. Doctors, nurses and social workers who are observant and understanding of the relationship between the condition of young women's genital tracts and their life situations are essential partners in the process of determining the research agenda.

Sanctuaries

 Strategies must be found that lengthen the time before the onset of sexual intercourse in young women, increase the age at first pregnancy and which increase the ability of young girls to control the situations in which they are sexually active.

 Spaces must be created within which young girls can be free, and feel free, from the threat of HIV infection, within which they can pass more time before leaving to enter the world of sexual relationships and procreation and within which they can talk to each other about their coping and survival strategies, their difficulties and their successes.

 Safe havens must also be found or created which would allow social and emotional interactions between girls and boys, young women and young men, and in which they can discuss and set aside the peer pressures, cultural norms and gender archetypes which increase their vulnerability to infection.

 The family should be the foremost of these sanctuaries. Young girls should leave their families uninfected and should be able to return to them when in fear of infection. The silence around incest must be broken, above all by mothers and those who minister to and provide service to such families. The direct price of incest is higher than ever now. The collusion of families, whether from greed or acceptance, in customs and practices which threaten the lives of their daughters must cease. Neither young women nor young men should be pressured into child or early marriages or into early pregnancies. Dowry payments or patrilocality should not prevent the possibility of a young woman returning to her family home when in fear of being infected.

 Families alone cannot change cultural norms, values and practices.36 Thus, advocating families as sanctuaries requires a complementary strategy of cultural change. Such a strategy must be led by the guardians and enforcers of culture, influential community leaders, older women, the elders, as well as by those who are now demanding such change, young men and women and their parents.

 The school should also be a sanctuary from infection. However, the school is a site of non-consensual sexual activities and of HIV infection. Rape, sexual abuse and coercion by male staff and pupils combined with the exchange of sex with older men for school fees currently make the school a feared and fearful place. Community acceptance of this as normal must change. A policy of providing scholarships would obviate the need for young girls to find older men to finance their schooling. Sanctions enforced by local communities would change entrenched patterns of sexual exploitation of young girls by teachers or male students. These sanctions are now beginning to be imposed in some seriously affected areas as communities strive to keep some of their young girls uninfected.

 Organizations and clubs for young women create sanctuaries where young girls can spend time without the threat of infection. They break the isolation of individual women and can lead to the creation of social support networks where young women can seek counsel and be given support to change their behaviour and to create change in their communities.

 Groups working amongst street children in Brazil have opened safe houses where the girls can escape from the pressures of the street and regain a feeling of security and control over their lives. One such house is the Casa de Passagen (Passage house) in Recife, Brazil37.

 Such groups and organizations can also provide a refuge where infected girls and young women can come together and provide each other with support, exchange information on care and treatment and discuss issues of basic concern such as disclosure, sexuality, discrimination, pregnancy and their children's futures.

 It is critical that religious organizations also create such sanctuaries for women and for men, separately and together. This would lend their moral authority to a recognition of the importance and value of young women and would help families and communities to find the courage to change and to provide sanctuary themselves.

 These safe havens are critical for young girls to reach the physical maturity and the emotional and social maturity necessary to have greater control over their lives and the situations in which they have sexual intercourse.

Sanctions

 The urgency of the situation may well necessitate the use of sanctions. In this respect the law can be used as an agent of social change. For example, the introduction and enforcement of laws in Southern Africa requiring men to provide financial support to all children they father, whether within marriage or outside it, has led to a significant decrease in the number of such children.

 Laws against rape and incest and family law relating to the age of marriage or divorce have been less successful where there have not been concurrent changes in social and cultural values. Communities must therefore accept and decide to enforce such laws and place pressure on their members to change.

 In Uganda, recent changes in governmental and community attitudes brought about by the epidemic have led to military courts trying soldiers for rape, legal services being expanded for women who have been sexually abused, vigorous reporting by the media of sexual abuse in schools and teachers being sacked for unacceptable sexual behaviour38.

Safety

 For women throughout the world, safety, that is, freedom from physical, sexual, verbal, psychological and other forms of violence, is an issue that dominates all others in their lives. The data on the extent of violence to women is quite appalling39 but little known or acknowledged.

 Abuse in the childhood or early adult lives of young women leads to low self-esteem, little ability for self-assertion and the probability of increased abuse by others, all factors which have been shown to increase the likelihood of HIV infection. In men, childhood abuse also leads to low self esteem and to an increased likelihood of their abusing others39.

 New women's crisis initiatives exist in at least 35 developing countries40. All of these are dependent on external support agencies for their financing. It is vitally important to support and expand programmes to lessen violence to women and to provide refuges for abused women. This can become a significant role for external support agencies.

Restructuring gender

 The ability of young women to protect themselves from infection becomes a direct function of power relations between men and women and, in particular, of men's sexual identity. Gender is formed in families but constructed by societies36. To change accepted patterns of male behaviour and expected patterns of female behaviour, therefore requires community organizing and collective action.

 Individual families and societies must change how they value girls. The more women are valued, the better they will be fed and nurtured, given access to health services and education, provided with the skills required for economic autonomy and have their rights honoured, in particular to land and property, especially through inheritance.

 This valuing of women will make it possible for women to value their own bodies, to improve their genital health and to have their genital infections and conditions diagnosed and treated, for cultural practices such as infibulation which increase women's likelihood of infection to be changed and for women to live through pregnancy and childbirth with minimal risk of death or lifelong disability32.

 Families must also change what they value in boys and men so that men will be less likely to place themselves and others at risk of infection. Boys and men, not only girls and women, must become the guardians of compassion, of respect for others, of healing, connectedness and of mercy.

The circle of the dance

 For young women to be able to remain uninfected, men and women, their communities and nations must want this to happen and be committed to work urgently towards it. Only then will there be hope. The priorities of the bioscientific research agenda must be changed and knowledge of all the factors which contribute to the susceptibility of young women to HIV infection deepened. Agendas for action must be drawn up locally and nationally. This will best be achieved through the creation of consultative processes which involve all those implicated in the required changes. These processes must be such that men feel able to participate, that women's insights and analyses are valued and listened to and that the external factors, the socio-economic and political climate which creates the conditions which increase women's and men's vulnerability to infection, can be addressed. Such processes are already occurring either spontaneously41 or set in motion by concerned individuals as in the case of the Women and AIDS Support Network in Zimbabwe. They are critical if the lives of young women are to be saved. The resulting agenda for action will provide the basis for hope.


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Acknowledgements

This paper was first published as an insert in AIDS and Society, International Research and Policy Bulletin, Vol.4 No.1, October/November 1992.


Biographical Note

Elizabeth Reid is 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 in Africa, Asia, the Pacific, the Middle East and Latin America and the Caribbean.

Michael Bailey is a biologist specializing in sexual health in developing countries. He advises non-governmental organizations and government development agencies of Britain and the European Union.

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