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WOMEN LIVING WITH HIV/AIDS

 

Today, as I speak before this esteemed gathering, I speak with a sense of humility. Humility because I have been tasked with speaking to a richness of experience at this Commission. Women and men in this room have converged from worlds that are different and yet similar. Worlds that are advancing technologically every second, worlds that are providing a basic standard of living to their people, worlds that are facing deprivation and genocide, worlds that have experienced oil spills and a destruction of natural resources, worlds that are signing strange trade agreements, and worlds that are facing the threat of HIV/AIDS epidemic. I think one reason why all of us are coming here at times in the face of difficult circumstances is just to let one another and the world know how our lives are being affected and it is this coming together that has brought a vitality into this room.

Given the time constraint and keeping in mind the focus of this session, I will focus on issues relating to women and HIV/AIDS. I will not dwell on a justification of the fact that HIV/AIDS is affecting more and more women in a negative manner. I think there is enough understanding on this issue. What I would like to highlight is the voices and experiences of women living with HIV/AIDS that we have had the good fortune to listen to and understand through community based research carried out in six countries of Asia, Africa and Latin America. This has been possible through a joint UNIFEM/UNAIDS/UNFPA initiative entitled "Gender Focussed Responses to Address the Challenges of HIV/AIDS." The research is indicative not exhaustive but the findings are quite path breaking and offer excellent opportunities for creating enabling policy and programme environments for women living with the virus.

Our activities in Africa are pointing out clearly that there is now a need to focus IEC activities on "How to Cope" rather than "How to Prevent" as the support for women living with HIV/AIDS within her family, if it exists is quite "ambivalent" and not solid or unconditional.

And when we talk of how to cope, we need to bear in mind that we are now witnessing an era that is seeing a very sudden shift of gender roles because of the AIDS epidemic. For example, in Zimbabwe, women are moving into the carpentry industry as men are getting sick and dying. The challenge for all of us as change agents is to see how we can help women move successfully as they adjust to these changing roles.

Another path breaking finding is a very recent information generated in a country of Asia where women living with HIV/AIDS have said that the knowledge about the protective aspects of condom use usually became available to them after they had contracted the virus. This rather simple statement has powerful undertones for us as we reengineer the ways in which information is made available to men and women, and on the ways in which our IEC strategies are designed

In West Africa, the findings of the community based research are breaking stereotyped perceptions. The study has revealed that there was not too much difference in women’s knowledge about their body and sexuality between literate and illiterate women, pointing out to the fact that education without a well thought out component on life skills education has made the so called ‘empowered’ women as vulnerable to the epidemic as the disempowered ones. Another finding was that the knowledge of the sex workers about their bodies was much lower than that of the housewives.

Latin America has offered us some interesting insights into the issues of access to expensive anti-retroviral drugs. This issue is of no small significance and has been a topic of debate and discussion in a number of international fora. Questions like "Why is the treatment in the North when he patients are in the South?" have been raised by our esteemed delegates to the United Nations in recent meetings. The scenario of access to medical treatment becomes bleaker as we do a gender sensitive analysis of this state of affairs. Our community based data collection in a country in Latin America has revealed that even though policy provides free access to anti retroviral drugs for PLWHAs, women still remain disadvantaged as women are in the informal sector whereas access to AZT is possible only through the formal sector.

The voices of women are loud and clear. The issue of better access and continued supplies of basic but affordable medicines for opportunistic infections be it ORT packets, bandages, drying powders, palliative pain killers is the need of the day. Last week, the New York Times headlined, "Pain Relief Underused for Poor, study says." The news item highlighted how a study conducted by the International Narcotics Control Board revealed a severe shortage of morphine and other pain killers in the poor countries. The ten largest consumer countries accounted for as much as 80% of the analgesic morphine consumption. We have to tilt this balance. Women want to live and die with dignity and we will have to make this possible.

Friends, this mutating virus envelops in its fold two most insidious areas of oppression and inequality – that is, gender and sexuality. HIV/AIDS has today more than ever focussed our attention on the fact that gender is a structural problem not just a social problem. The more the epidemic is maturing, the more we are becoming convinced that changing attitudes and promoting access to resources seemed relatively simple in the face of the task of breaking and rebuilding structures that are social in nature, economic in nature and political in nature.

At the same time, structures that rendered stability to the socio-economic fabric are being broken with the onslaught of HIV/AIDS. The epidemic in Africa has confronted development workers with a dilemma – the dilemma of a silent breakdown of an informal social institution – the extended family. Will the extended family continue to act as a social security net for women living with HIV/AIDS? Unfortunately, in some parts of Africa, it is already showing signs of nervous vulnerability. The family compositions are changing. A significant finding of a study on the socio-economic impact of HIV on rural households in Uganda by Daphne Topouzis is that there are far more women who have lost their husbands to AIDS than men who have lost their wives. In Tororo, a TASO worker reported that only 5 of her 62 clients were widowers. The rest were young widows from 15 – 35 years of age. I had interviewed a group of women living with HIV/AIDS in India and Nepal and all were widows under 24 years of age. And as female headed households are increasing in a number of African countries, the family composition in Asia are shaking with more and more women living with HIV/AIDS having to live as single deserted women.

Death and desertion have serious implications. The World Bank finding that adult death depresses per capita food consumption in poorest households by 15 percent implies that in responding to the epidemic, national governments would need to use adult death and household dependency ratios as targeting criteria for poverty alleviation programmes, especially micro credit initiatives. And as we reprioritize our national spending, we will need to do it with a critical gender lens.

Women living with the virus are today silently expressing a need for support to break abusive relationships, support for their children to be placed in foster homes, support for access to housing, support by way of hospices and finally support to access a stable means of livelihood. Women need to be visible in the labour market and their work participation rate would somehow need to be increased to enable them to bear the shock of exacerbating morbidity. The poser that arises here is that, "How can this be done when the workforce is getting sick due to disease?" At this juncture, it is important to emphasize that HIV is not necessarily an early life sentence. People with HIV are living full lives if the resources to help them are properly in place.

Today every minute five more people under the age of 25 are being infected. More than half of these women are living in the developing world. These women are facing a host of ethical dilemmas as they confront the HIV/AIDS epidemic – I echo a few below:

-Should I risk giving birth to a sick child?
-Can I ever get access to protocol 076 that could prevent this from happening?
-Would I be cheated and used as a placebo if I volunteer to participate in research trials?
-Will my child die if I do not breastfeed him/her for fear of mother to child transmission?
-Will my community forgive me for not breastfeeding my child?
-If I do opt for not bringing a sick child into the world who will ensure that I will have access to a safe medical termination of pregnancy?

And the list of dilemmas goes on.

I would like to conclude on a note that these are still dilemmas not dead ends. The dilemmas do have answers, and these answers can be unearthed if we decide to reengineer development with the richness of the perspectives of the women living with HIV/AIDS. This is critical for the ways in which we as policy makers and implementers respond to the epidemic now, will influence the ways in which women will participate and contribute to development in the twenty-first century. This is because national development will be conditional on human survival and the survival of those who reproduce and nurture the human race. This in fact needs to be the primary focus of our attention today.

Madhu Bala Nath
UNAIDS/UNIFEM
Gender & HIV Adviser