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Women Living With HIV at AIDS 2012 Part 1: The Greater Involvement of Women Living With HIV

May 15, 2012

Ways of Practising GIPA

Why should the involvement of women living with HIV be a priority for the International AIDS Conference (AIDS 2012) to be held in Washington, D.C., this July? What are some ways that women with HIV who attend the conference can participate meaningfully? In Part 1 and 2 of this blog post, my goal is to sketch out some answers to these questions from my experience. I hope this will be an opening to a larger conversation and that other people living with HIV will share their thoughts, questions, and experiences in response.

Part I: The Greater Involvement of Women Living With HIV

A number of years ago, a former colleague and friend stated that she thought people with HIV shouldn't be involved in HIV prevention work, given that people with HIV have demonstrated that they know, or care, little about avoiding HIV risk. Her words may have been an attempt to make herself feel more important or legitimate as an HIV-negative social worker in the HIV/AIDS field; however, she was neither the first nor last person working in the HIV/AIDS field to question why we don't just leave these things to the professionals.

It is not only people without HIV who question; people with HIV can also feel that we have little to offer. Because of this, I think it is important to take seriously the challenge to explain why the involvement of people living with HIV is important in all areas of work that address the HIV epidemic, and, given the upcoming International AIDS Conference, to talk about the meaningful involvement of women living with HIV, in particular, at this conference.

The involvement of people living with HIV in all aspects of the response to the epidemic is critical for two simple reasons:

  • First and foremost, it recognizes and protects the human rights and dignity of people living with HIV.
  • Second, it makes programs designed to provide prevention, treatment, care, and support to people with HIV and key populations more effective.

Human Rights and Dignity

The human rights and dignity of people living with HIV are recognized and protected when we are meaningfully included and involved in decision-making about the things that affect us. If we are not meaningfully included, then we are treated as children or helpless victims for whom others, such as public health professionals, doctors, scientists, and politicians, must make decisions. When we are at the decision-making table, then we are political adults and formally treated as equals (whether we are treated as equals by the others at the table is a topic for another day).

Decision-making does not only happen in government chambers -- it happens in all of the daily work that takes place in research labs, medical offices, AIDS service organizations, public health offices, and at the conferences where leaders in the field gather to share their research and programs and to discuss with each other how to interpret their data, communicate their findings, and plan the next stages of research and program activities. It is critical that people with HIV be active participants in those discussions.


Effective Programs

In addition to protecting our human rights, the researchers and program people (for example, from public health and ASOs) need us there; some of them recognize this and deeply value their work with communities of people with HIV. It turns out that, despite my former colleague's dismissive remarks, the contributions and expertise of people living with HIV are necessary for HIV programs to work. People living with HIV know better than anyone where the current programs fall short, where prevention programs fail, what social support works and what doesn't, the barriers to accessing treatment and care consistently, the effects of stigma and discrimination, and the resilience and resourcefulness of people with HIV. Of great importance, people living with HIV also often know how and where to reach people who need prevention, treatment, care, and support services -- people who often have had a history of mistreatment by public health and government officials, because of racism, homophobia, and other kinds of prejudiced behaviour, and whose trust needs to be earned.

Women Living With HIV

But what about women living with HIV? Are there particular reasons that women's involvement is necessary? I say yes. If positive women are not at the center of decisions that affect us, then, once again, we are treated as children for whom others must make the important decisions. Beyond this, there are a multitude of gender-specific ways that HIV affects women from the way that the virus affects our bodies, to the side effects of medications, to the social effects (including women's frequent caregiving role and general lack of equal resources in the US). For transgender women living with HIV, the gaps between their needs and priorities for HIV prevention, treatment, care, and support and what is available are enormous.

In addition, the inequalities between women that exist before HIV infection continue to exist after HIV infection, so that experiences based on poverty status, race, gender, gender identity, sexual orientation, age, and disability continue to shape women's lives differently. This means that the full diversity of positive women's voices is needed and we have to be careful that the voices of those with the most privilege don't become mistaken for the voices of all.

Stay tuned for Part 2: Positive Women at AIDS 2012.

The Global Network of People Living with HIV (GNP+) is the global network for and by people living with HIV. GNP+ advocates to improve the quality of life of people living with HIV. GNP+ North America is a regional chapter of GNP+ focused on lifting the voices of PLWH in Canada and the U.S.

Laurel Sprague is GNP+/NA regional coordinator.

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This article was provided by Positive Women's Network of the United States of America. Visit PWN-USA's website to find out more about their activities and publications.
See Also
Women Living With HIV at AIDS 2012 Part 2: Positive Women at AIDS 2012
More on HIV Treatment in the Developing World
More on Global HIV and Women

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