Outmoded CDC Surveillance System Inadequately Counts HIV+ Women

Rona Taylor

Outmoded CDC Surveillance System Inadequately Counts HIV+ Women

The National Women and AIDS Collective, (NWAC), a coalition born out of the Women and AIDS Fund at the Ms. Foundation, in collaboration with the National Association of People Living with AIDS (NAPWA) recently convened a congressional briefing sponsored by Senator Hilary Clinton that brought attention to the flawed HIV-surveillance system as it is currently designed and how that impacts women who are accessing HIV testing and counseling.

The current system is based on an outmoded understanding of the epidemic from the early 1980s. Therefore, it does not accurately report or reflect why women are increasingly becoming infected with HIV. The result: policies, programs and funding levels that are tragically inadequate to address the true magnitude of the HIV/AIDS epidemic among American women. This has profound implications for women at risk of, or living with, HIV/AIDS in the United States.

“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, “says Vanessa Johnson, a member of NWAC and Deputy Director for NAPWA.

In reality, many women are contracting HIV because they believe they are in a monogamous relationship with their male partner and/or they are unaware of their male partner’s sexual history, risk behavior or HIV status. Unable to identify their partner’s HIV status or risk behavior, they do not fit into any of the exposure/risk categories specified by the Center for Disease Control. This focus primarily on risk behaviors does not take into consideration contributing environmental and socioeconomic factors that go beyond basic gender, race and ethnicity classifications.

Consequently, the CDC surveillance system automatically places them in the category labeled "no identified risk”, which is eight out of eight in the hierarchy of risk. 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. This percentage ranges anywhere from 47-60% of women currently being tested.

In order to address this disparity, the National Women and AIDS Collective has written a position paper that is proposing the following policy recommendations.

1. Revise the CDC HIV/AIDS surveillance system's transmission categories in order to accurately capture HIV incidence and prevalence data on women.

2. Create an acquisition category that would capture information on comprehensive socioeconomic and environmental factors known to elevate women’s—particularly women of color and low-income women—risk of HIV infection irrespective of presumed or identified behavioral risks.

3. Increase surveillance funding.

4. Convene a workgroup to discuss items number 1 through 3 with representation from the National Women and AIDS Collective.

These recommendations will help to ensure a more accurate picture of the epidemic in women and enable this country to adequately address it.

Posted at 6:00 AM, Nov 08, 2007 in Health Care | Permalink | Comments (4)

Comments

I am no long up on current work in HIV epidemiology. I am uncomfortable, however, with statements in the post above like this one:

"In reality, many women are contracting HIV because they believe they are in a monogamous relationship with their male partner and/or they are unaware of their male partner’s sexual history, risk behavior or HIV status."

Could you, would you cite me to the data that support this statement? When I checked the Coalition website, I found the same statement but no references. When you write "many" how many? What proportion of women (incidence? prevalence?) How do we know?

What is your opinion on the likely implications of the revised CDC HIV/AIDS testing guidelines for women if they were to be adopted?

http://www.cdc.gov/mmwR/preview/mmwrhtml/rr5514a1.htm

Mr. Millstone,

Thank you for your comment and the opportunity to clarify my post.

The “many” women being referred to are 47 percent (and sometimes up to 60 percent in some states) of people who fall into the risk/exposure category of no identified risk (NIR). This data was provided via personal communication from a representative of the CDC with the authors of the National Women and AIDS Collective (NWAC) position paper and is cited on page 3.

Ms Talyor,

My concern is parly addressed.

I do understand that the "many" you refer to are those 47% of women whose risk is not identified. But then you use the connector "because" to link this group with a set of possible risks. I take "because" to be a claim that the possible risks identified are "the cause" of the HIV+ status of the NIR women.

The point of gathering further data on NIR women is to identify those risks which are at least statistically associated with their HIV+ status. If we already know what the cause is, why collect the data?

I looked at the proposed CDC guidelines, by the way. They seemed an improvement to me over long-ago practice but I suspect my view is more prejudice than thought-out judgment. Where does this proposal stand now?