Positive Women Decry Lack of Consultation With White House for National Women and Girls HIV/AIDS Awareness Day Event

Women living with HIV from around the United States spoke up on National Women and Girls HIV/AIDS Awareness Day, decrying the White House Office of National AIDS Policy (ONAP) for holding an event that included no positive women in the planning.

Although Vanessa Johnson of the Positive Women's Network -- USA (PWN-USA) was a speaker at the event, "Stepping Out of the Shadows: HIV & Violence Against Women and Girls," PWN-USA noted in a press release, "Not a single woman living with HIV -- including the women with HIV who currently sit on the President's Advisory Council on HIV/AIDS (PACHA) -- was involved in putting together an event focused on an issue that is literally a matter of life and death for too many women and girls living with and affected by HIV in our communities."

At the event, Johnson explained that, "Here in the United States, the basis for supporting the participation of women living with HIV is found in the Denver Principles, an historic document authored in 1983, which outlines the rights of people living with HIV as well as recommendations for participatory leadership and decision-making ... For example, today's focus on domestic violence and women would not be possible without the leadership and advocacy of women, especially women living with HIV."

Meanwhile, a storm was brewing on Twitter and other social media, as word spread about the exclusion:

Douglas Brooks, the head of ONAP who is also a person living with HIV, apologized for the oversight, noting potentially hurt feelings:

I also want to thank some women who are here, some who are watching and aren't here -- women living with HIV who have partnered with our office over the past three years also to bring this work to fruition. I will also say to them -- Tina [Tchen] just alluded to the very important voices that they raised: They raised voices with me last week to remind me that it was important for them to be included in the planning of meetings such as this. And for any exclusion that people felt, and certainly for any hurt that we may have had people feel: I apologize, on behalf of myself and our office.

Naina Khanna, Executive Director of PWN-USA spoke back to Brooks via tweet:

Later in the day, Khanna gave more details to TheBody.com:

We applaud ONAP's continued leadership in addressing the intersections of violence, trauma, HIV and women, on and beyond National Women and Girls HIV/AIDS Awareness Day. We appreciate [ONAP director] Douglas Brooks for publicly acknowledging the failure to include women with HIV in planning and programming for the White House's NWGHAAD event on this issue.

However, it's important to be clear that our concern regarding exclusion from an event on a day meant to highlight the HIV epidemic's impact on women is not about 'hurt feelings' -- a buzz phrase too often used to dismiss real concerns about policy issues when they're presented by women.

During the event, Johnson spoke forcefully of how leaders should collaborate with HIV-positive women to achieve important goals:

I stand in here in hope that both communities of women, HIV and domestic violence, which are inextricably linked, will build upon a shared vision to create a world where women, regardless of HIV status, no longer experience violence in their lives.

We together must advance collaborative, shared and supportive leadership which:

  1. Brings gender equality and human rights perspectives to the forefront.
  2. Clearly recognizes the role and influence of all women, including women living with HIV.
  3. Spearheads strategies that effectively address the underlying causes of HIV such as violence against women, feminized poverty and women's limited voice in decision-making. And ...
  4. Reminds our national leaders and partners that the best outcomes are always ones that start with meaningful involvement of affected populations.

In her comments to TheBody.com, Khanna added some specific measures by which ONAP could show its commitment to women with HIV:

We are gravely concerned about ONAP's commitment to women with HIV. We call on the White House to demonstrate its commitment unequivocally: by including the gender-specific metrics in National HIV/AIDS Strategy 2.0 that were left out of the first NHAS; and by ensuring high quality, appropriate, and accessible women-centered care continues to be an integral aspect of the Ryan White Program.

Julie "JD" Davids is the managing editor for TheBody.com and TheBodyPRO.com.