The Ethics of pregnancy, testing and stigma

The crisis for HIV-positive women

Von Alice Welbourn

Offering counseling and testing for HIV to pregnant women who come for antenatal care services provides an opportunity to identify HIV-positive women and invite them to take part in a PMTCT program. It is often at this occasion that women first learn about their HIV-positive status. Alice Welbourn sets out the reality for pregnant HIV positive women and explains what the International Community of Women living with HIV/AIDS (ICW) is calling for.

HIV positive women often learn for the first time about their status when they attend an antenatal clinic when they are expecting a baby. Suddenly you are told that you have a life-threatening condition, which may also affect your baby. Even worse than this, a woman’s husband or in-laws are often told first, in complete violation of her rights. Staff may treat her roughly, as if it is her “fault” that she is HIV positive. She may be threatened with abortion or sterilisation, whether she wants to have her baby or not, by the very people who should be supporting her in deciding for herself what is best to do next. This is especially devastating for the many among you who have told us about being married to older men by your parents and who, prior to your marriage, have had no other sexual relations. In the vast majority of cases, it turns out that a woman’s husband is also HIV positive. Yet it is assumed – quite illogically and unjustly – that because you were tested first, you must have been the one to bring HIV to the relationship.

To access treatment successfully, we also need care and support

The International Community of Women living with HIV/AIDS (ICW) has recently taken on the new role as co-convener of the UNAIDS Global Coalition of Women and AIDS access to treatment arm. In that role, one of our concerns is to ensure that we are not just thinking about access to treatment for positive women, but also for the on-going care and support we need. And of course a crucial part of this for many of us is how to avoid HIV transmission to our babies. At present, the main point of entry for women to be tested and start treatment has been identified by the World Health Organization as antenatal care, because this is the time when any woman is most likely to come into contact with government health services. Sadly, worldwide health service provision is so desperately under resourced that for the foreseeable future it is unlikely women will be offered prepregnancy testing routinely, or that most women of any age who are not pregnant will be offered these services at all. Even though pregnant women want to protect their unborn child from HIV, since antenatal clinic health staff are not treating women with compassion and respect, many women are not returning for test results or treatments.

As a part of ICW’s new role as co-convener, we are calling for health service providers around the world to consider women’s mental as well as physical health, and to promote:

a) testing facilities for prospective mothers before they conceive, so that they can then decide whether or not they want to have a baby

b) testing facilities for prospective fathers as well as prospective mothers, to ensure that they realise their joint responsibilities in relation to HIV

c) testing facilities both for expectant mothers and for their partners so that responsibility for a positive diagnosis can be jointly shared

d) full, non-judgmental information, support and care for all pregnant positive women, so that they can decide for themselves whether or not to proceed with the pregnancy.

Columbia University’s Mother-to-Child Transmission Plus programme in Southern Africa and elsewhere promotes care and support not only for the expectant mother and her unborn child, but also care and treatment, as needed, for her partner and other children in the family. Until pre-pregnancy testing becomes a realisable option, such an approach may mean that positive women will be less blamed for supposedly bringing HIV into the family, and will not have to face the dilemma of receiving treatment while their partners or children are not. ICW is also very aware that many of the front-line health staff around the world are themselves women, who often anticipate what is happening in their own marriage beds, but fear losing their jobs if they get tested. Is it possible that some of these staff are projecting onto their clients their own anxiety of how they might be treated were they HIV positive themselves?

With these ideas in mind, ICW is also calling for health services around the world to develop supportive HIV workplace policies, to ensure that HIV positive health staff are fully respected, supported and retained in their posts. We believe that once health staff feel valued and respected, whatever of their status, they will feel more ready to respond positively to the immense stresses and strains of supporting and respecting their HIV positive clients.

*Alice Welbourn is chair of the International Community of Women Living with HIV/AIDS (ICW) and co-chair and founder member of SOFIA, a new UK-based women's forum which aims to change policies, so that there is effective prevention and better access to treatment for women living with HIV and AIDS. Contact: info@icw.org, www.icw.org. Article published in: ICW News, Issue 28, January/February 2005, www.icw.org/tiki-download_file.php?fileId=125, reproduced as fair use.