FOR IMMEDIATE RELEASE
National Women and AIDS Collective
National Association of People with AIDS
NEW YORK - The National Women and AIDS Collective (NWAC), a coalition of HIV-infected and affected women activists born out of the Ms. Foundation for Women’s Women and AIDS Fund, in collaboration with the National Association of People with AIDS (NAPWA), is convening a Congressional breakfast briefing on Monday, October 22. The event is sponsored by Senator Hillary Clinton and will advocate for changes to federal policy currently fueling high infection rates among women in the US.
At the briefing, members of the NWAC Leadership Team will present their proposal for key policy changes to the CDC HIV Surveillance System. Bishop Joyce Turner Keller will testify about the impact of current policies on her life and HIV status. The event will take place from 8:00am – 10:00am and will be held at the Russell Senate Office Building, Room 385, 1st & C Streets, NE, Washington, DC.
The Center for Disease Control and Prevention (CDC), the national body responsible for HIV data collection and funding prescriptions for prevention and testing services nationwide, currently tracks new cases of HIV/AIDS using a data collection model informed by a decades-old understanding of the epidemic. But instead of periodically revising the model to more accurately capture data on how and why women are increasingly becoming infected with HIV, the CDC HIV surveillance system has only undergone one small revision since the early 1980s.
Meanwhile, women have come to represent a growing proportion of new HIV/AIDS cases, more than tripling from 8% of new cases in 1985 to 27% of new cases in 2005. Women of color have been especially hard hit and represent the majority of new HIV and AIDS cases among women, and the majority of women living with HIV/AIDS. In 2004 (the most recent year for which data are available), HIV infection was the leading cause of death for African American women aged 25–34 years.
According to NWAC’s position paper, to be released at Monday’s Congressional briefing, “An outdated HIV surveillance data-collection system yields policies, programs and funding levels that are tragically inadequate to address the true magnitude of the HIV/AIDS epidemic among American women. As such, the current design of the CDC’s HIV/AIDS surveillance system has profound implications for women at risk of, or living with, HIV/AIDS in the United States.”
“The bottom line is this: a minor change to CDC policy could save thousands of women’s lives,” says Vanessa Johnson, a member of NWAC and Deputy Director of NAPWA. “For years, it has been widely understood among health practitioners and advocates nationwide that women—particularly women of color and low-income women—are at high risk of HIV infection. But as long as the data doesn’t reflect this reality, women will continue to be denied life-saving prevention and testing services now reserved for other high-risk populations such as men who have sex with men and injection drug users.”
NWAC’s Policy Proposal
In order to correct these failures, the National Women and AIDS Collective proposes that the CDC:
- Revise its HIV surveillance system in order to accurately capture data on women and HIV/AIDS—particularly for women of color and low-income women—and thus enable health practitioners and advocates to adequately address the quickening impact of the epidemic on women nationwide.
- Reform its HIV surveillance system to capture data on comprehensive socioeconomic and environmental determinants of health that are known to fuel the virus among women and people of color. This would require a departure from an exclusively risk-based assessment of newly reported HIV cases.
To read the complete NWAC position paper and policy proposal, click here.
Why the Current CDC HIV Surveillance System Isn’t Working for Women
In part, NWAC contends that the current CDC HIV surveillance system fuels the epidemic among women because it fails to capture crucial information regarding environmental and socioeconomic factors beyond basic classifications of gender, race and ethnicity. Research shows that women of color remain at disproportionate risk of HIV infection even when they aren’t engaging in high-risk behavior such as drug use, sex with men who have sex with men, sex work, etc. As such, a data collection method that only takes into account high-risk behaviors falls far short of addressing the prevention needs of women of color and other populations whose HIV rates are influenced by a range of environmental and socioeconomic factors.
In addition, many women are contracting HIV when they believe they are in a monogamous relationship with their male partner but are unaware of his HIV status or sexual history. If they are unable to identify their male partner’s HIV status or behavior that would place them at risk of HIV infection, the CDC surveillance system automatically places these women in a generic category labeled "no identified risk” (NIR). Once placed in this category, information about their case has no real chance of informing funding prescriptions for prevention and testing efforts nationwide or influencing public perceptions of the epidemic.
The CDC reports that 47% of all women testing HIV positive in the United States are classified as NIR. NWAC members report that among women testing HIV positive in their local and state programs as many as 60% are classified as NIR.
Women who are raped and unable to identify the status of their attacker face a similar fate. At the age of 52, Bishop Joyce Turner Keller was diagnosed with Stage 4-AIDS. In a testimony to be presented at the event on Monday, Bishop Keller reports, “Had I not gotten into a car accident, I would have died not knowing. Years earlier, when seeking medical care after having been raped in my own home at the age of 44, I was not given or offered an AIDS test. I was asked what my profession was and checked for STDs. The subject of HIV or AIDS never came up. I was not white or gay, what did it have do with me?”
INTERVIEWS AVAILABLE
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About NWAC
The National Women and AIDS Collective (NWAC) is the first national policy group led by women living with and affected by HIV/AIDS. NWAC strives to give structure and power to a U.S.-based national women and AIDS movement. It is housed within the Women and AIDS Fund (WAF) of the Ms. Foundation for Women and was created in 2005 by a group of WAF grantees determined to advocate for changes to federal HIV/AIDS policies that jeopardize their ability to serve women at local levels and to address the unique and historically unmet needs of women living with HIV/AIDS.
About NAPWA
Founded in 1983, the National Association of People with AIDS is a non-profit membership organization that advocates on behalf of all people living with HIV and AIDS in order to end the pandemic and the human suffering caused by HIV/AIDS. We are the oldest national AIDS organization in the United States and the oldest national network of people living with HIV/AIDS in the world. For more information, please visit: http://napwa.org/.
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