NEW YORK – March 9 Timed to coincide with National Women and Girls HIV/AIDS Awareness Day, the National Women and AIDS Collective of the Ms. Foundation for Women (NWAC) has issued its first policy demand to the Centers for Disease Control.

Though the proportion of AIDS cases among women has risen dramatically over the last 20 years-from 8% in 1985 to 27% in 2005-most policies and services at the federal, state, and local level has been crafted primarily to reflect and meet the needs of single men. As this population of women with AIDS has grown, it has exposed a fatal flaw in the system of data collection used by the CDC to allocate funding, monitor trends, plan prevention programs and target risk-reduction interventions.

Because the CDC's definition of HIV "risk" has traditionally left women off the map, more than one-third of women now being diagnosed with HIV are officially, but incorrectly, categorized as having "No Identified Risk"-a catchall category for individuals who do not fit into the CDC's more rigid transmission category list (these include: men who have sex with men, intravenous drug users, individuals with hemophilia/coagulation disorders, transplant recipients, and individuals who have sex with high risk-individuals). According to the CDC itself, this lack of "accurate risk factor documentation and reporting" means that state and federal funding for HIV prevention and AIDS services is less likely to reach the populations who most need it.

For women, the results of this flawed methodology are devastating: too many females are left uniformed of their serostatus, without proper care, and unable to reduce transmission of HIV to others. Moreover, this outdated HIV surveillance (data collection) system has contributed to inadequate funding and resources for American women-who are experiencing rates of infection similar to those in developing countries.

"Despite the fact that HIV/AIDS ranks only behind cancer and heart disease as the leading cause of death in women, women remain the last, the least and the left out when it comes to shaping HIV/AIDS policy in the U.S.," said Ms. Foundation Program Officer Desiree Flores. "NWAC is here to change that. The HIV infected and affected women activists that make up NWAC have countless stories to tell of women being denied testing at federally funded clinics because they don't fit the profile of a person who is at 'high risk.' It is time to institute testing policies and counseling that meet the real needs of women."

To address this unacceptable disparity, the National Women and AIDS Collective, which represents 21 organizations from across the country led by HIV-positive women, is asking the CDC to change its methodology for identifying and categorizing risk factors for HIV infection. Specifically, NWAC demands that the CDC:

--Revise its surveillance system's "Transmission Category" list, in order that data on women can be captured more accurately. (A "transmission category" is a means of identifying those who are likely to transmit the virus.)

--Develop a new "Acquisition Category" to focus on women engaging in unprotected sex with male partners who are unaware of their own HIV status, and women lacking knowledge of their male sexual partners' behavioral risk factors-i.e. partners who are HIV-positive, have sex with other men, inject drugs and/or other substances, engage in sex work, are transgendered. (An "acquisition category" is a means identifying how an individual is exposed to the virus.)

"Women with HIV/AIDS have been ignored for too long-at the policy table and in everyday life," said Ms. Foundation President and CEO Sara K. Gould. "With women making up an increasing percentage of newly identified HIV infections, we must bring women's needs and women's voices to the decision-making table if policies and services are to evolve to meet the reality of the disease. NWAC's goal is to put the power back into the hands of women whose lives have been affected by HIV, and this first policy recommendation goes a long way to making that vision a reality."

The demographic shift that this proposed policy change responds to is startling: Along with the sharp jump in HIV/AIDS cases in women overall, today HIV infection ranks as the leading cause of death for African-American women aged 25-34 years. African-American and Hispanic women together accounted for 83% of the estimated AIDS diagnoses for women in 2005-despite representing only 25% of all US women. And the impact of the disease on young women of all colors is especially striking: girls now represent 43% of all AIDS cases reported among those aged 13-19.

This changing demography has also made it clear that women with HIV face specific challenges in living with the disease. Women who are pregnant, or wish to have children must face the reality of passing the virus to their child. Women tend to be the primary caregivers for other HIV-positive family members, and 76% of HIV positive women report having children under the age of 18 in their homes, meaning they must balance self-care with child care. They are forced to navigate a complex health-care system while not only dealing with child care issues and sexual and physical violence, but also with higher rates of poverty: 64% of women living with HIV/AIDS report incomes of less than $10,000, in comparison to 41% of HIV-positive men.

With the ongoing support of the Ms. Foundation for Women, NWAC will continue to advocate for policy initiatives that shine a light on the needs of women and girls with HIV. The Collective plans to work in close collaboration with Dr. Kathleen McDavid, an epidemiologist with CDC's HIV Incidence and Case Surveillance Branch, to ensure that this policy demand is met by CDC.

For more information on NWAC or the Ms. Foundation, please visit: www.ms.foundation.org.  

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