Advocacy

WORLD’s mission statement includes a section stating that we are dedicated to educating and inspiring women with HIV/AIDS to advocate for themselves, one another and their communities. This has been a central ingredient in the recipe that makes up our organization. In our office, we have a picture that is incredibly inspiring: our founder Rebecca Denison and other women marching in front of Chowchilla State Prison for women in 1997, demanding that HIV+ female prisoners receive adequate medical care and support. They carry a banner that reads, “We are women living with AIDS, fighting for our lives.”

Women of WORLD are advocates with diverse skills, experiences and ways in which they make their voices heard. Some women come to a WORLD retreat and are able to go home knowing that they need to leave an abusive relationship because they deserve to be treated with respect and compassion. Other women complete an HIV University course and go on to start their own AIDS service organizations in communities where women have very little support. Some have gone on to join their local and state HIV planning groups as advocates for women with HIV. The type and level of advocacy that each woman rises to is unique and different.

As an organization, WORLD is involved in a variety of advocacy activities at local, state, national and international levels. The following is a sampling of some of our advocacy work:

Our local advocacy includes facilitating and providing leadership training to the Consumer Input Task Force of our Alameda County Ryan White Title IV collaborative, the Family Care Network (FCN). This group was formed to ensure that HIV+ women and youth have an opportunity to give direct input into services provided by the FCN and ideas for improving services. WORLD Peer Advocates work daily to ensure that HIV+ women locally have the best possible medical care and support services available to them. At times this means, “going to bat” for a woman that is in need of a strong ally.

Statewide, WORLD women have joined the California HIV Planning Group and been instrumental in pushing for the creation of a Women’s Task Force. The new Task Force is up and running and providing critical information and perspective that has been missing in the Planning Group. In addition, WORLD has been able to utilize it’s network of HIV+ women throughout the state to increase HIV+ female membership within the larger group. WORLD has been involved in planning a variety of actions at the State Capitol, including a very successful protest to fight against proposed ADAP cuts. Following this protest, the Governor announced that the cuts would not be made.

Nationally, WORLD is a member of the leadership team of the National Women and AIDS Collective (NWAC). The Collective is comprised of grantees of the Ms. Foundation’s Women and AIDS Fund. NWAC is currently working to change outdated HIV surveillance guidelines that focus on targeted HIV testing for “high risk” groups. Many women today are becoming infected through heterosexual sex within what they believe is a monogamous relationship. They do not necessarily know all of the risk factors of their male partner. Unless a woman can report that she is being sexually active with someone with an MSM, IDU or sex work history, she is not considered high risk for acquiring HIV. She is placed in a “No Identified Risk” category. Nationally, 47% of women testing HIV-positive are placed in this category. Because women are not seen as being high risk for HIV, resources are not allocated to focus on prevention and testing campaigns focused on them. Many women are under the impression that they are completely safe. Twenty-five years into the HIV epidemic we know that it only takes one sexual contact to become infected. NWAC is determined to change a system that is not taking women’s risk for HIV seriously.

Internationally, WORLD recently participated in a program sponsored by Population Action highlighting the harmful effects of President Bush’s abstinence only policies tied to U.S. AIDS funding in Africa. As women infected and affected by HIV, WORLD has a responsibility to oppose policies that are killing women, girls and their loved ones regardless of where they live.

Advocacy in 2007: Needed Now More Than Ever

We at WORLD realize that we are part of a bigger community of women working on HIV/AIDS in their communities throughout the U.S. Where do women with HIV and the organizations founded, staffed and led by them and their allies stand in 2007? Phenomenal work is taking place within each of our organizations by women determined to fight for themselves and their sisters. This fight happens when a Peer Advocate helps her fellow HIV+ woman find a competent, compassionate doctor. It happens when a woman sits at a table surrounded by men advocating for services, anti-stigma campaigns and testing initiatives that are developed by and for women. However, at this time in the epidemic it is still painfully true that if we do not do this work for ourselves, it will not be done. We find ourselves still struggling to secure basic resources for our work in the shadows of larger AIDS organizations. We find ourselves wondering why when African American women are becoming infected at rates comparable to some developing countries there is a resounding absence of a coordinated response to this travesty. We find ourselves wondering why when there are occasional forums or plenary sessions at conferences on women and HIV, HIV+ women are not asked to speak. We find ourselves wondering why 25 years later there is only now a clinical trial taking off that enrolls a majority of women in order to study unanswered questions about HIV treatment and women. We wonder why after so many years of HIV awareness campaigns, women still live in fear of disclosing their HIV status to loved ones and community members. We find ourselves wondering why there is no longer a national Women and AIDS Conference. As we survey the national landscape of women living with HIV in the U.S. we see two things: absolutely amazing groups of strong women supporting one another with meager resources, and the reality that in some ways we have lost ground as the HIV epidemic grinds on. We are involved in NWAC and other advocacy work because we know that we are stronger together, and what we need now more than ever is strength and resolve.