Editorial by ICW featured in EQUINET news

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ICW has written the editorial on HIV POSITIVE WOMEN'S CONCERNS IN ACCESS TO CARE, TREATMENT AND SUPPORT.

Research has consistently shown that gender inequalities and gender stereotypes restrict people's access to health services. The same is true of treatment for HIV and related problems. Testimonies from women gathered by the International Community of Women Living with HIV/AIDS (ICW) shows the many ways in which this continues to take place, even as access to treatment expands. HIV-related stigma and discrimination and gender inequalities are rife and when, for example, a woman has to ask relatives for permission to access services her safety and confidentiality are jeopardised. Violence and sexual coercion in the first place put women at risk from HIV infection. An HIV positive diagnosis can lead to increased levels of abuse, violence and abandonment and also lead to a further lack of self-confidence all of which undermine women's ability to look after their health and assert their rights.

When services are centrally located in major urban areas or when they charge fees for service, women are even less likely to access them. In fact even when ART is free women have found that costs associated with travel and treatment for related health problems puts the chance of leading a healthy life with HIV out of their reach. A further concern arises when women access ARVs and their families do not. This may happen either due to a lack of ART provision for families or a reluctance on the part of family members to be tested. This puts the women who are being treated under severe pressure, through coercion or guilt, to share their treatment.

"Most of us as women living with HIV and who are using ARVs we face a common problem that our husbands or partners tend to force us to give them our ARVs dose while he has not tested for HIV and doesn't know his CD4 counts. They do not want to go for testing while they show all HIV symptoms. Even if you refuse he will find where you keep your medicine and steal them." (ICW members, Tanzania, 2005).

Further, if family members are not accessing treatment then the burden to care for them as their health worsens generally falls on women. Gender and HIV-related stigma and discrimination are also reflected in the health services. Our members have reported that health care workers are often indiscreet and disrespectful; put conditionalties on treatment access, for example, making women go on contraceptives; fail to understand the context within which women have to put into action advice and treatments given, for example, advice against breast-feeding maybe ignored because of the associated stigma; lack specialist knowledge and services about treatment issues for women; and do not provide suitable monitoring and follow-up care of treatment and side-effects. These latter two conditions are worsened in resource poor settings.

Women report that they feel better able to deal with a positive diagnosis when health care workers are respectful of women and their rights, refer them to sources of care and support and understand the specific problems they face in terms health; and how they can act on the advice and treatment given them.

"We have been having some changes and interruptions in our treatment regimes because many times when we go for ARVs clinic we are being asked for some money so we tend to miss the dose even for a week or month till we get some money to pay for that service. Another regime is lack of enough food especially to us women who are under treatment. The consequences were; not finishing my dose which caused infections, staying without a dose till the clinic day and lie to the service provider that I have finished my dose, fighting with my husband or even chasing me out of the house when I refuse giving him my dose."(ICW members, Tanzania, 2005)

Too often information is not tailored to cover the range of concerns that HIV positive have regarding care, treatment and support. Information given may be pushing a government or company line, be written in English and not local languages or may use medical language and dense text. The information may only be available in health centres and not distributed to places where women can access it during their daily routines. It may only be available in written form causing problems for women that are not literate. The scarcity of relevant information is made worse by the lack of research on the gender-related impact of treatment for AIDS, or on related issues like its interaction with social and clinical factors such as hormonal contraceptives and violence in the family. That is why ICW calls for knowledge and information tailored to the specific needs of women, delivered in a way that understands that women may not chance upon it on a table in a waiting room at the hospital. Support groups are already doing a wonderful job in this regard.

We also call for women-specific clinical and social research that does not just treat participants as research subjects from which information can be extracted, but empowers them to participate in research in ways that enable them to gain skills and to use the information to advocate for change in their communities and countries.

Finally, there are a growing number of HIV positive women who are treatment activists. We feel frustrated when we constantly hear policy-makers tell us that we, as women treatment activists, we do not have the skills to engage with them. We would rather ask whether those in policy positions have the skills to engage with us in a way that is respectful and meaningful. With the challenges we face in reaching universal access, surely it is time that we all challenged our notions of where true expertise lies? The International Community of Women Living with HIV/AIDS (ICW), set up in 1992, is an international network with over 5000 HIV positive women members worldwide. This article is based on their testimonies. "ACTS" refers to HIV positive women's ability to gain consistent access to all available care, treatment and support services.