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The "Gender Problem" in HIV Policy Making: No Women at the Table

An Interview With E. Tyler Crone of ATHENA

September 29, 2010

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What are some reasons why women, both negative and positive, are left out of HIV policy making?

First, because HIV was first identified in white gay men, that's where all the research and money went to in the early years -- and that legacy continues to play out. There just hasn't been the same type of money and attention around women's mobilizing, leadership and research. Women have basically been invisible. Just in the past 10 years, has there been recognition that HIV is devastating women.

Second, historically in almost every arena you examine, women have been underrepresented in decision-making forums. While this is outside the scope of our review, I believe that sexism and gender norms dictate when women participate and when they don't. Looking specifically at women who are living with HIV, they tend to be less formally educated women, so they face a range of issues, from having to be responsible for the home, fear of speaking up and speaking out against the violence they face in their communities, and afraid of the stigma they may face if they reveal that they are positive. We are also talking about lack of access, lack of resources and even a lack of regular Internet connection.

We are also talking about basic things like how are women going to pay for the bus fare to show up to a meeting -- and if they get there, who is going to take care of their children? That was something that women from Alabama to South Africa were concerned about when we interviewed them.

Speaking of money, many of the women activists I got to know who do AIDS work globally and in the U.S. do much of it on a volunteer basis. Meanwhile, most of the HIV institutions are staffed by men who have paid time to think about strategies, and paid time to show up to meetings, and a staff that can book their airfare and hotel rooms. So while the barriers are not very glamorous or sexy, they play a critical role nonetheless in limiting women's engagement and role.

At the same time, I want to honor and acknowledge that women are doing really transformative work in their communities. Despite these barriers or lack of participation in formal mechanisms, there is a tremendously strong HIV women's movement flourishing.

What are some examples of the great work that women are doing that goes unnoticed?

When people ask what is happening with women and what solutions work, one has to first talk about the persistent underfunding and the lack of capacity building to scale up and sustain these programs.

Basically making it destined to fail.

But work is being done. Right now, home-based care is front and center, with women providing care to people who are really sick with AIDS. Women, who make up 90 percent of home-based care workers, are coming to people's homes bringing food, making sure they are taking their medications, bathing them and helping them. This is the backbone to the HIV response in the global south, yet it garners very little money or attention. The AIDS world has stopped paying attention to it and feminist groups have stopped pushing it because they feel that it pushes the notion of women as caregivers.

Another form of grassroots work being done by women living with HIV is providing support groups for other positive women. These groups provide a safe place for women to go in order to ask questions about their medications, seek help about domestic violence, obtain information about contraceptive methods, and learn skills. These groups also provide a sense of community and build strong leaders through peer mentoring. But it, too, goes underfunded.

Work around violence against women and gendered violence hasn't been recognized sufficiently as an essential part of the AIDS response, even though there is a lot of work being done and definitive literature that shows that violence is both a driver of HIV transmission and a result of HIV. Researchers have been examining these connections for decades, but it is only now, in 2010, that the issue is being taken up in formal spaces. We need more funding for work on violence as an HIV strategy, both in terms of prevention and impact mitigation.

The report laid out 10 recommendations for high-level policy makers, including asking groups to monitor and track the participation of people living HIV; reserving seats for positive women and advocates at policy meetings; providing leadership training, sustained technical support and mentorship to women leaders; and investing in organizations and initiatives led by and with HIV-positive women. How did ATHENA and UNIFEM come up with these recommendations?

It was challenging -- we could have come up with more than 10. We wanted to identify what really needed to be done; be pragmatic and reflective; and suggest some concrete steps that people can take. But we also wanted to set some lofty goals as well.

So we made an amalgamation of past statements, civil society papers and past research to rearticulate what others had said. Some of this is really obvious, some is pushing the envelope, some is based from what the women we interviewed told us. But all of it is laid out in one document and it clearly states what we want to see happen: a rise in visibility, a rise in participation, a rise in funding to sustain women's groups and leadership.

What was the response to the report been?

That's such an interesting and troubling question. At the IAC, we had a fantastic satellite event with HIV-positive women leaders from around the world. We had a great dialogue about our experiences, what meaningful participation means, and what our next steps should be.

Then later on we had a press conference, and at first there was a very slim audience. But then the room started to fill, because Bill Gates was having a press conference immediately after ours. Coincidently, some of the journalists then took the research and findings we presented and tossed it back at Bill Gates during his question and answer session -- which was fabulous.

Unfortunately, as much as mainstream media was present covering the conference, gender and women's issues just didn't get the reception they deserve. And still doesn't now.

Well it's not sexy. And it's not coming from someone like Bill Gates.

It feels tired because unfortunately we keep saying the same thing -- over, and over, and over again.

Bill Gates is an interesting point. Back in 2006, Bill and Melinda Gates both said they were going to put the power of prevention in the hands of women. They were going to scale up the funding for microbicides -- and they did. And don't get me wrong, microbicides should be celebrated, because we need all the tools in the tool box that we can get.

But the Gates talked about power and microbicides without any real conversation about what power is. Look at condoms -- you can disseminate them out to women, but if they don't have the power to enforce them in their relationships, what does it mean? Microbicides can have that same analysis. It's one tool, it's an important tool, but it's just not it alone.

I agree that putting power in the hands of women would be a huge prevention tool, but the HIV mainstream actors don't talk about power in terms of women's human rights. Yet you look time and time again, whatever the issue it is and everyone wants the biomedical fix. No one wants to deal with the social factors.

We need more money, more sustainability, more training for women and programs that address these social issues in order to create effective policies and strategies for women living with HIV around the world.

Crone's views expressed in this interview do not necessarily reflect the views of UNIFEM.

Kellee Terrell is the former news editor for and

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This article was provided by TheBody.
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Reader Comments:

Comment by: Amelia (Seattle, WA) Tue., Oct. 19, 2010 at 2:55 pm UTC
Great article. Thanks for the important work you're doing.
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