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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