Some providers of services for past or present users of illicit drugs are becoming more conscious of the needs of women in the HIV context (DAWN, 1991; Ryan, 1990). This chapter' addresses some of the issucs from a British perspective.
WHY WOMEN AND HIV?
In January 1990, during a period of some speculation over the 'myth of heterosexual AIDS" in the UK and the USA, the World Health Organization (WHO) announced that World AIDS Day 1990 would focus attention on 'Women and AIDS' — aiming to heighten awareness of the risk of HIV infection among women, highlight the increasing impact of risk of HIV infection among women and the role they play in HIV prevention and care. The WHO estimated at that time that at least six million people were infected with HIV worldwide, of which approximately two million were women. It is aLso predicted a cumulative total of 350,000 cases of AIDS among women by the end of 1992, or three times as many as had occurred by the end of the 1980s.
In Britain, the number of women reported to be infected with HIV at the end of June 1990 was 1,408 (HIV total for both sexes 14,090) and the number of women with AIDS, 138 (AIDS total for both sexes 3,433). These figures are likely to be underestimates. Previously, women with the virus were mainly injecting drug users but the number of reported cases of AIDS acquired heterosexually almost doubled last year. At the end of 1987, 147 women were known to have contracted HIV sexually, compared with 567 in September 1990. The reported number of women infected through injecting drug use rose from 168 to 615 in the same period. Positively Women, the organization for HIV-positive women, currently reports that nine of ten women who now contact them have acquired the virus heterosexually. Meanwhile, current medical knowledge indicates that women are more likely than men to contract HIV through an infected sexual partner.
These details underline the importance of thinking about women in the context of HIV prevention work and service provision — women are increasingly becoming infected as well as affected by the virus.
The official June 1990 HIV figures put the number of reported cases of heterosexual transmission at 7 per cent of the total and injecting drug use at 14 per cent. Nearly half of these heterosexual people with the virus were women. Add to this the fact that reported cases are likely to be under-representative, that there is now some suggestion that women drug injectors are becoming infected through heterosexual sex and that, despite some recent changes, drug services are less likely to attract women — and there is a considerable case for initiatives which will shift drug policy and practice accordingly.
The need for change was stated in AIDS and Drug Misuse, Part 2, the Report of the Advisory Council on the Misuse of Drugs (ACMD, 1989) on the implications for services of HIV infection and related illness in drug users.
Research suggests that although proportionately fewer female than male drug misusers attend drug services, services which make a particular effort to gear what is offered to the needs of women can be successful in attracting a much higher proportion of women clients. Drug services should review their policies to ensure they are receptive to the needs of women (ACMD, 1989: 41).
The reports suggested reasons why women may have reduced access to services.
...because they find the service off-putting and not understanding of their needs; because it is difficult to find somebody to look after their children; or because they are frightened that their children will be taken into care if they admit to having a drug problem. Evidence indicates that women are far more likely to attend services which consciously aim to attract them; unfortunately many services inadvertently deter them.
The suggestion made by the report for overcoming these barriers included women-only sessions, availability of women doctors and counsellors, provision of creche and child care facilities, good family planning advice and well-informed counselling for pregnant HIV+ women. The need for social services departments to counteract the fear that drug use per se is a reason for separating parents and children was also emphasized, as was the need for a change in attitudes which assume that certain types of sexual behaviour and drug misuse are less acceptable in women than in men.
WOMEN, HIV AND HARM MINIMIZATION
With the ACMD report's recognition that 'HIV is a greater threat to public and individual health than drug misuse' (ACMD, 1988), some official support for the adoption of a general harm minimization approach (previously or otherwise known as harm reduction, risk reduction) within drug services was forthcoming. As such, HIV legitimized, to some degree, approaches to drug treatment which have safer or controlled drug use in various forms, rather than total abstinence as their only goal. The development of a new kind of service — needle and syringe exchange schemes and the provision of condoms — has been the most graphic illustration of this shift. Concern over the spread of HIV infection has consolidated and also boosted expansion in community-based services and multi-agency approaches to service provision.
Almost certainly, more than any other single factor, AIDS and the threat of transmission of HIV both within the drug-using population and beyond has forced a fundamental rethink of drug services (Ettorre, 1990).
Focusing on women in the context of HIV underlines the need to continue this rethinking process. Despite the move towards community-based information, advice, counselling and treatment services and the emphasis upon 'user friendliness' and upon maximizing contact with drug users, women still do not figure large as consumers of drug services. Even needle and syringe exchange schemes — where women might have been expected to fall into a 'shopping' role — would not appear to be attracting more women. The 1989 figures for those attending needle and syringe exchanges in England showed no improvement on 1987-8 — an overwhelmingly male attendance of 79 per cent (Donoghoe, 1990). This failure to provide the kinds of drug services which women feel able to use would suggest a need to abandon any remaining isolationist approaches to the provision of drug services, to realize the limitations of 'clients must come to the service' assumptions, and to broaden the concept of harm minimization. 'Harm reduction is not just about clean needles and syringes, methadone, etc., but also about ante-natal advice, child care issues, etc.' (Roulston, 1990). The concept could also be usefully broadened to take account of women's health aside from their role as mothers and to include Positively Women's view of the key issues facing women with HIV/AIDS — 'a roof over our heads, food in our stomachs, stability and information on treatment' (London Voluntary Services Council, 1989).
WOMEN AND DRUG USE
Women who use illicit drugs are beyond the moral pale. Their behaviour goes against people's expectations of the feminine and is typified as selfish, deviant, criminal, etc. Greater horror is expressed at women users than men, as men are expected and 'allowed' to be aggressive, self-indulgent and so on, although they are punished for it. This is particularly clear from the enormous concern about mothers — never fathers — using drugs .
The different social perceptions and personal experiences of women drug us'ers have been acknowledged in some quarters of the drug field for over a decade. Addressing their needs is no new idea — even if it is an idea still awaiting widespread practical application. Drug-using women have long contended with the social sanction which constructs them as 'failed' and often 'fallen'. However, HIV has added a new dimension. Apart from the more obvious threat it holds for their lives and wellbeing, HIV-positive women drug users and ex-users report being confronted by a triple layer of stigma: the association of drug use with deviance and self-destruction, the images of sexual deviance associated with AIDS and the now double departure from socially prescribed behaviour worthy of the 'good woman', which connection with the previous two factors apparently signifies.
Positively Women, the organization for HIV-positive women, report that women are frequently reluctant to approach often unsympathetic services, living instead in fear and isolation. A negative association between Africa and AIDS in the public mind makes this particularly acute for Black women, but also for women from other minority ethnic backgrounds. Stigma and fear of the authorities is particularly relevant to women involved with drugs. The fact that women's multiple social roles — especially informal caring and child care roles — can result in a tendency to defer meeting their own health needs has also been suggested as a contributing factor.
It is often the case that a woman's first response to a positive HIV antibody test result is one of loss. This feeling can include many things — one of which is a sense of loss of the possibility of becoming a mother, even though having a child may never have been seriously considered. Scientific findings may be of litde support in this emotional situation but current research puts the risk of an HIV-positive mother infecting her baby at between 25 and 33 per cent — less than or similar to some genetic diseases. Early research findings in the US, however (based on a small cohort of women already ill), suggested a high likelihood of transmission and the onset of illness among HIV-positive new mothers. The unfortunate result of the combination of this now revised information with the general panic over AIDS has been a tremendous pressure upon HIV-positive pregnant women to have abortions. This practice, unaccompanied by clear and accurate information enabling women to make an informed choice, has not — despite major improvements in specialist services in recent years — disappeared. HIV-positive women can now also receive excellent treatment throughout the process of childbirth, but again, cases of unnecessarily punitive responses from medical staff are still reported, with many HIV-positive women made to feel 'like murderers with no social conscience'.
SEX AND SEXUALITY
Discussion of sex and sexuality in the drug and HIV literature tends to be reduced to questions of prevalence of condom use as an indicator of (lack of) behaviour change among dnig users. This is a limited view by any account, particularly as it relates to women in the HIV context. Positively speaking, HIV has opened up the possibility for women to pursue the non-penetrative sexual pleasures the sex surveys have indicated they often prefer. However, many women are personally and socially unable to exercise control over their lives, even if they wish to.
HIV-positive women are surrounded by negative images. Negative assumptions, previously attached to women who use drugs and now to HIV-positive women, are often based upon an historical persistent association between active female sexuality and deviance. A departure from traditional heterosexuality can still invite social sanction. Or a step into activities considered deviant can also be associated with sexual deviance. It is, for instance, often assumed as a matter of course that women drug users are involved in prostitution. ISDD's research and other reports suggests that HIV-positive women tend to be seen as promiscuous or in some way deviant no matter what their lifestyle (Dom et al., 1991).
For women involved in prostitution, HIV has prompted an increase in official scrutiny based upon fear over the spread of HIV infection. The race to establish the rate of HIV infection among them emphasized the threat to the consumers of these sexual services rather than the providers. Later self-help and outreach initiatives have attempted to reverse the focus, emphasizing the risks for the women involved, including the risk from offers of higher rates of pay for unsafe sex.
Much of public health education on HIV/AIDS geared to heterosexuals has placed the responsibility for promoting safer sex, as birth control, upon women. Research shows that women are more inclined to want to practise safer sex. However, apart from the fact that carrying condoms still cuts across the gain of female respectability in the eyes of many, the social circumstances of women's relationships often prevent them. Recent reports suggest that articulate and advantaged women, well informed about HIV, still have difficulty in negotiating safer sex. Questions such as betrayal of trust, failure to demonstrate love, destruction of 'spontaneity' complicate the issue. For women who inject drugs the difficulties may be more acute — since, for instance, they may take up additional positions of dependence upon men, such as sharing injecting equipment, following and being injected by a male partner. The wish for a child in a long-standing relationship also works against the notion of practising safer sex. The popular (and inaccurate) status of lesbian sex as 'no-risk' sex, although contradictory to another popular association between HIV and all homosexuality, also combines with it to hinder consideration of safer sex practices among women.
For many women, living with the virus is complicated by the responsibilities of child care. The consequences of the parenting role for health and general wellbeing can be depleting as well as rewarding at the best of times. HIV can bring with it fear of infecting children, fear of their treatment by others or the task of caring for an infected child. Contact with services is likely to be increased for mothers and with it the possibilides of experiencing disservice. Informing her children of her (and possibly their own) HIV-positive status can be a pardcularly difficult decision (some women have less choice by dint of obvious illness). Any impetus for a straightfoward and honest approach can be complicated by fear of the internal impact upon the child — especially the burden of the information and the consequences of any breaches in confidentiality. Concern over the future of children in the event of illness and/or death is complicated for women by the lack of child care support in general, and of respite and residential care geared to mothers and of 'safe' fostering systems in particular.
Many issues surrounding drug use, HIV and women have yet' to be fully addressed. Those competing for attention include the lack of practical forms of support available such as cash help, housing, dealing with welfare benefits, legal problems, etc., and the lack of clear and accurate information on the clinical manifestations of the virus in women. (It has, for example, been suggested recently that opportunistic infections that may be a part of the spectrum of AIDS-related diseases in women may go unrecognized.) Meanwhile, there is no dimension to the range of issues which requires more attention than that of race. The major rethink of drug services predicated by the advent of HIV/AIDS may yet provide the impetus for the dramatic change required to make drug services in Britain attractive to the majority of black people who may require them.
In this country, there are initiatives to support and make contact not only with women who inject drugs, but also with other women drug users and non-drug-using female partners and relatives of drug users. Much of this innovative work is under-publicized but includes: establishing specialist drug services in women's health centres and other generic health services; detached work in supermarkets and launderettes; multi-agency work involving family planning, obstetric and gynaecological staff; residential units for women drug users wishing to maintain custody of the children and streetwork with women involved in prostitution (Henderson, 1990). Such work is in its infancy and those involved in its development would not profess to know all the answers. However, it does point the way forward in the important process of developing services which cater for the specific needs of women — an essential consideration for harm minimization strategies which all too often have been gender blind.
Special thanks go to Mary Treacy of the Standing Conference on Drug Abuse (SCODA) for invaluable advice, comments and support throughout the production of the book that forms the basis of this chapter. Thanks also to my colleagues at the Institute for the Study of Drug Dependence (ISDD) and in the Women and HIV/AIDS Networks in Lothian and the Thames Region. This work was supported by the AIDS Unit of the Department of Health.
1 This chapter has been an cditcd version of the introduction to Women, Drugs, HIV: Practical Issues, a paperback cditcd by the author, in which practitioners from a range of services discuss the issues as they arise in their specific areas of work.
2 In November 1989, The Sun picked up on the latest wave of attempts to sway the official line on HIV/AIDS away from the notion that it affects us all and sweep it to the margins. Headlines such as that of 18 November 1989, 'AIDS: The Hoax of the Century', were sparked off by words attributed to Lord Kilbracken • (a member of the All Party Parliamentary Group on AIDS) to the effect that 'straight sex can't give you AIDS'. This, together with coverage of Michael Fumento's book, The Myth of Heterosexual AIDS, cast previous campaigns to prevent the spread of AIDS through heterosexual sex as a phoney war.
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Dorn, N., Henderson, S. and South, N. (1991) AIDS: Women, Dnigs and Social Care, London: Falmer Press. (in press)
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Henderson, S. (1990) Women, Drugs, HIV: Practical Issues, London: Institute for the Study of Drug Dependence.
London Voluntary Services Council (1989) 'Linking up. Voluntary and statutory collaboration on HIV/AIDS', report of a seminar held by thc London Voluntary Services Council, London.
Roulston, J. (1990) 'Women in perspective, paper presented to the NOVOAH Confercncc, Birmingham, April.
Ryan, L. (1991) 'Desperately smiting services? A directory of services provision for women by the Women's HIV/AIDS Network', London: Health Education Authority.