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By Rona Taylor — The National Women and AIDS Collective (NWAC) exists to build the sustainable power and position of HIV positive and affected women to make policy change and build programs that improve women’s lives. For the last three years NWAC has been working to move the CDC to change its HIV surveillance system to fully consider the impact of socioeconomic factors on HIV acquisition among women and transform its data collection methodology to accurately capture this information.
Over the last two years, NWAC has been surveying its member organizations – organizations led for and by women living with and affected with HIV/AIDS – to document the experiences of their clients with getting tested for HIV. Consistently, what NWAC has heard from its network is that there are continued barriers for women to obtain a test.
One barrier is the way that targeted testing occurs in community based organizations. Community based organizations are funded to test high risk populations. The way that this impacts women is that in order for women to be considered high-risk she has to know her partner’s risk (i.e. her partner is HIV-positive, has a history of substance, is bi-sexual). The problem is that many women do not know their partner’s risk, and when data is being collected they fall into a no-identified risk category (NIR). This is significant because the data is used to allocate resources, monitor trends, conduct prevention planning, and identify new and emerging at-risk populations. Because the NIR category does not document a risk factor for many women the result is a fundamentally inaccurate picture of the epidemic for women and inability for local prevention planning bodies to appropriately prioritize resources. NWAC members reportedthat among women testing HIV positive in their local and state programs, 30% to as much as 60% were classified as NIR. More alarming, NWAC has received reports from women who tell of being denied HIV testing because they didnot fit into current exposure/risk categories. If one-third to a little over one-half of the women are falling into NIR then that means that adequate resources are not being allocated and adequate prevention planning is not being done.
NWAC member organization Women Alive (www.women-alive.org), discovered that in addition to women being discouraged or denied testing, there was also a disincentive for providers to test due to tiered fee structures. Essentially, providers are being paid more to test individuals who are perceived as high risk versus those perceived as low-risk, which tend to be women, Asian Pacific Islander and Native American populations. Perhaps this will change soon. According to a recent press release from the Division of HIV/AIDS Prevention:
On Thursday, June 17, 2010, the Centers for Disease Control and Prevention’s (CDC) Division of HIV/AIDS Prevention launched a new phase of its Act Against AIDS campaign, HIV Screening. Standard Care. (HSSC) to assist physicians in making HIV testing a standard part of medical care.
HSSC is designed to increase implementation of CDC’s 2006 HIV screening recommendations. These recommendations advise that all patients between the ages of 13 and 64 be tested for HIV as a routine part of medical care HSSC is designed to increase implementation of CDC’s 2006 HIV screening recommendations. These recommendations advise that all patients between the ages of 13 and 64 be tested for HIV as a routine part of medical care at least once – regardless of perceived risk for the disease – and that individuals at high risk (e.g., those with multiple or HIV-infected partners) be tested at least annually.
Testing regardless of perceived risk is something that NWAC has been advocating for several years and it appears that the CDC has heard us.
Another layer is that testing has been based solely on risk behavior. However, NWAC contends that gender, socioeconomic, racial and ethnic disparities need to be taken into consideration. According to the World Health Organization, only one third of health outcomes are impacted by behavior with two-thirds of the other factors having to do with social determinants. Therefore, a testing methodology that is targeted and takes social determinants into account would be optimal.
Working within a behavioral risk paradigm has perhaps had an unintended consequence for women. Ultimately, the barriers it creates means that women often present late for testing , access care once they already have full-blown AIDS and die at a faster rate. NWAC has identified two strategies that could mitigate these circumstances for women.
The first strategy was developed by NWAC member organization Women Rising Project (WPR) (www.womenrisingproject.org), a program of AIDS Services of Austin. WRP developed a pilot testing project that had three key elements: meaningful involvement and leadership development for HIV-positive women, peer-to-peer outreach, and strategic community partners.
The WRP campaign was successful in attracting women who are not traditionally targeted. On reviewing the findings of the pilot, it was learned that 70% of these women did not meet the Centers for Disease Control & Prevention (CDC) definition of “high risk heterosexual” and therefore fall outside of CDC’s targeted prevention efforts. Yet, 95% indicated in their counseling sessions had a realization of the importance of consistent risk reduction. The peer outreach efforts were critical in increasing awareness of women’s vulnerability to HIV and motivated this group of women to know their status.
The second strategy, by the Maryland Department of Health and Mental Hygiene, is utilizing behavioral surveillance data that is inclusive of social determinants and Geographic Information Systems (GIS )mapping to ensure testing of higher rates of heterosexual individuals that are HIV positive.This strategy does away with a solely risk based paradigm and uses GIS mapping to identify where the highest prevalence (numbers of people living with HIV/AIDS) are located. This methodology showed that using a targeted testing method which utilizes geography versus a targeted testing method based solely on risk (the current CDC practice at counseling, testing and referral providers in community based settings) resulted in twice the number of heterosexual individuals tested.
As we eagerly await the implementation of the National HIV/AIDS strategy and what it will look like, it will be the support of strategies like these that could make a difference in saving women’s lives.
Rona Taylor is the Organizer for the National Women and AIDS Collective.
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