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Organization: International Community of Women Living with HIV (ICW)
Area of Response to HIV: Gender, Key Populations
Interview was originally published in the August 2014 newsletter.
Beri Hull is the global advocacy officer for the International Community of Women Living with HIV (ICW). ICW promotes the voice of women living with HIV (WLHIV) throughout the world and advocates for their human rights. Hull's work focuses on advocacy for sexual and reproductive health; rights; care, treatment, and support for WLHIV. ICW operates at the national, regional, and global levels, and Hull works closely with bilateral and multilateral agencies, governments, and donors (including the UN) to promote the rights and participation of WLHIV. The HIV Policy and Advocacy Monitor spoke to Hull about her global advocacy work and how policy can improve the lives of WLHIV.
HIV Policy and Advocacy Monitor: What led you to work in HIV policy and advocacy with ICW?
I have always been a person that gets involved in issues that are close to me and that I am passionate about. My past includes a history of drug addiction and my road to recovery led to me becoming a chemical dependency counselor. That, in turn, led to me becoming an HIV counselor. Working directly with men and women living with HIV and being a woman living with HIV made for a natural transition to advocacy. I first worked with people living with HIV in the United States before focusing on the issues facing women living with HIV around the world. I started at ICW as a member and volunteer, and subsequently began working for the organization as the global advocacy officer.
HIV Policy and Advocacy Monitor: Why did you transition from service provision to advocacy?
I've always felt that advocacy was important to my spiritual health. Years ago, when I had a strong suspicion I was HIV positive, I wasn't able to accept that reality. When I got tested I panicked. Soon after though, I began realizing that it is important for me to be an HIV advocate; I believe that I can help others to better help themselves. In particular, the struggles that women and girls around the world face is humbling to me, and working internationally makes me realize that I should not take my own life for granted but instead work to help others.
HIV Policy and Advocacy Monitor: What are the key advocacy initiatives of ICW?
ICW was the first organization to link HIV and sexual and reproductive health and rights. We were doing it for our own sake as a network of women living with HIV (WLHIV). At the time, no one was looking at HIV from the perspective of WLHIV. Back then, for WLHIV to have children was considered heresy; thankfully, we've come a long way since then. Now, most HIV organizations have begun to realize the importance of linking HIV to sexual and reproductive health and rights.
Coordinating the response to HIV with the promotion of sexual and reproductive health and rights is a centerpiece of ICW's work. We are currently focused on responding to issues such as coerced sterilization, criminalization of HIV transmission, exposure and disclosure, and promoting maternal health and the survival of WLHIV. We also work with WLHIV to promote economic empowerment and access to care, treatment, and support services. Fundamental to everything we do are leadership involvement and "movement building"—empowering women to be advocates for their rights and needs in everything that would affect us as we live with HIV.
HIV Policy and Advocacy Monitor: Could you tell us more about what you mean by "movement building."
The solidarity that comes from belonging to a network of WLHIV from a position of power instead of stigma is conducive to community organization, participatory research, and advocacy for change. We consider "movement building" and leadership involvement to be a methodology rather than an agenda item.
HIV Policy and Advocacy Monitor: How does ICW work as a bridge between women living with HIV and governments?
Governments and donors need to insist that WLHIV be involved in programs that are meant to support women with HIV. Not just as consumers but as monitors, policymakers, managers, and planners. It takes an effort to include women, but it's important and fundamental to everything we advocate for.
ICW's tag line is "Nothing for us without us."
ICW is a network of women living with HIV, and we work as volunteers to try to identify places where WLHIV should be represented. That is a lot of work. A lot of times we as an organization are spread too thin. It's not so much about me, as the global advocacy coordinator, sitting at the decision-making table, but identifying women in country to represent us and help craft decisions made on responding to HIV. There's capacity building and training involved also. It's a lot of networking and community organizing and fighting for a seat at the decision-making table.
Unfortunately, a lot of times decisionmakers have already agreed what they want to do before stakeholders are engaged, and then, because you were there, they want to say that WLHIV were represented and agreed to the decisions made. Just because we were invited to be a part of the process and were present doesn't mean we had a role in making the decision or informing the decision. Politics has a lot to do with it. Therefore, it is important to be engaged throughout the whole policy process and not just be a mouth piece for what decisionmakers in governments already desire. We need to advocate effectively for our needs from the beginning and continue to work with other decisionmakers throughout the policy development process.
HIV Policy and Advocacy Monitor: How can organizations best advocate for the needs of their communities?
We need to work together more. You would think that because different groups living with or affected by HIV have common concerns, we'd work together, but a lot of times we think we're competing. That gets to be troubling. Attention and resources for HIV seem to be waning, but for people living with HIV, the virus is not going to wane. The main thing is for the people who are most impacted by the epidemic to be involved in the development and implementation of any solutions. They need to be consulted, to be decisionmakers—and we need to work together more than we do now.
More information on ICW's work can be found here: www.icw.org