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Not So Fast: Why HIV Rates May Not Be Truly Dropping Among U.S. Women

August 6, 2015

Is it time to reconsider what we know about HIV rates among women in the U.S.? In 2013, the Centers for Disease Control and Prevention (CDC) reported that the rate of new HIV infections (incidence) among women in the U.S. had dropped by 21% between 2008 and 2010. This news led some people to assume that the impact of HIV on American women was diminishing. But, on closer examination, the data show that what we know is incomplete. The key question is how many women have HIV but don't know it.

In 2011, the CDC estimated that 14% of all Americans living with HIV had not been diagnosed and did not know they had the virus. This number was reached by first estimating the total number of people living with HIV in a given year (HIV prevalence), and then subtracting from that the number of people living with diagnosed HIV.

The CDC estimated that, on average, between 2007 and 2011 (the most recent year for which detailed numbers are available) 79% of the undiagnosed people living with HIV were men and 21% were women. It is important to note, however, that CDC HIV diagnosis records indicate the person's sex at time of birth. This causes a discrepancy in the numbers. Although transgender people constitute a small percentage of the total population, in 2010 they accounted for the "highest percentage of newly identified HIV-positive test results" of any category. National data are not available on the ratio of transgender women to transgender men testing HIV positive; however, research conducted in New York City between 2009-2013 found that 98% of HIV diagnoses among transgender people were of transgender women. Thus, the vast majority of transgender people infected are likely transgender women. It is therefore reasonable to assume that the number of women counted as living with HIV (knowingly or unknowingly) is artificially lowered to some extent by the fact that transgender women are not counted as women, but as men.

Three studies, two of them very recent, contain data that raise questions about the extent to which women living with HIV aren't getting tested and, therefore, aren't being counted in national data on HIV diagnoses.

Between 2009 and 2011, the Women's HIV Seroincidence Study (HPTN 064) was conducted in 10 urban areas with high rates of both HIV prevalence and poverty: Atlanta, GA; Decatur, GA; Raleigh, NC; Chapel Hill, NC; Washington, DC; Baltimore, MD; Newark, NJ (north and south) and New York City (Bronx and Harlem). Led by researcher Sally Hodder, M.D., the study enrolled women volunteers who had not tested HIV positive and who reported having vaginal or anal sex without condoms at least once during the previous six months. All trial participants and/or their partners also reported at least one of several other HIV-risk characteristics. These included: incarceration within the last five years; or, within the last six months, injection or non-injection drug use, alcohol dependence or a sexually transmitted infection diagnosis.

Of the 2099 women enrolled, 88% were black or African American and 12% were Hispanic. 1.5 percent (32 women) tested HIV positive when they joined the study, although they had believed they were negative. And then, among the remainder who tested negative at the outset, 0.24 percent become HIV positive within a year after joining the study. This was nearly five times higher than the 0.05% incidence estimated by CDC for African-American women.

Hodder refers to these findings as evidence of a "hidden epidemic of HIV among US women." News coverage of the results pointed out that this rate of new infections was comparable to that of women in some areas of sub-Saharan Africa. For example, at that time women in the Republic of the Congo had 0.28% HIV incidence, and women in Kenya had 0.53% incidence.

The second and third studies produced observational data on the number of people receiving late HIV diagnoses. The number of CD4+ T cells a person has at the time of HIV diagnosis provides a rough indication of how long the person has been living with HIV. At the time of diagnosis, the stage of the person's HIV-related illness is recorded on a scale of 1-3. Those diagnosed at Stage 3 have immune systems already so damaged by HIV that they receive an AIDS diagnosis on the spot. Without treatment, the latency period between HIV infection and the onset of AIDS-defining conditions is about ten years. So a person receiving a "late diagnosis" of AIDS is someone who, presumably, has been living, uncounted, with HIV for about a decade.

According to the CDC, nationally between 2008 and 2012, the percentage of late diagnoses decreased for men (from 26.3% to 23.7%) and increased for women (from 24.4% to 25.1%). Among women in Louisiana, 33% of all first-time testers received late diagnoses.

In 2015, Susan Reif, Ph.D., and colleagues looked at HIV rates among people in the Deep South, a region they defined as including Alabama, Florida, Georgia, Louisiana, Mississippi, North Carolina, South Carolina, Tennessee and Texas. Among other findings, Reif's analyses of the available data provided information on women living with HIV in that region who had been undiagnosed and therefore uncounted.

In the region as a whole, Reif's team found that almost half (48%) of all people diagnosed with AIDS who were 55 or over died within five years of their diagnoses -- indicating late diagnoses and undercounting of both women and men. They characterized the Deep South's HIV-positive population as including "higher proportions of women, blacks, and individuals residing in suburban and rural areas than the overall United States."

Although they could not sort the available data by age, race and sex simultaneously, they noted that the women diagnosed with AIDS tended not to live as long as their male peers. Cumulatively, their findings suggest that older African-American women in the Deep South have the shortest survival rates of all HIV-positive residents in the region -- indicating that they were generally diagnosed later in their disease course.

The third study warranting attention was conducted in Atlanta by the Grady Hospital FOCUS HIV-testing program. Atlanta now has the among the highest HIV prevalence of any city in the country. Although the CDC recommends routine HIV testing in health care settings, Grady is the only hospital in Atlanta following that recommendation. In its emergency department, all patients are offered an HIV test regardless of the reason for their visit. In March 2015, FOCUS program director Abigail Hankin-Wei reported that on any given day approximately 1% of those tested are HIV positive and, she added, "nearly half of them have AIDS the day we diagnose them."

The FOCUS testing program's data reveal a slight rise in the percentage of women receiving late diagnoses. Although men still comprise three-quarters of all patients testing HIV positive, according to Lindsay Caulfield, Grady Hospital Office of Public Affairs, there was a decrease from 77% to 76% in late diagnoses of men between 2013 and 2015. The percentage of women diagnosed late correspondingly rose slightly, from 23% to 24%. This may be a small difference, but is it yet another shadow of the "hidden" HIV-positive women who are untested, uncounted and unserved throughout their first decade of their struggle with HIV?

Imagine this scenario. In Hodder's study, only four of the focus cities were in the Deep South. What if that study were repeated today but conducted exclusively in the Deep South (as Reif defined the region) and included women in both urban and non-urban areas?

Hodder's study found HIV rates among women that exceeded the CDC's generalized predictions by a factor of five. How would that figure change?

In states where Medicaid has not been expanded to include HIV testing, should we assume that HIV rates are declining among women simply because fewer of them are showing up in the diagnostic data? In cities in which one-third of the women testing positive for HIV are receiving late diagnoses, is it unreasonable to ask if HIV transmission to women is really waning? Or are a significant proportion of women living with HIV simply going uncounted -- for years -- in areas where HIV rates and poverty are high?

After three decades of working in HIV, Anna Forbes is now a consultant focused on women and HIV. Her clients range from mainstream global NGOs and research institutions to activist groups (her home turf) including GNP+, SERO, SisterLove and the Positive Women's Network, USA. She can be reached at

Copyright © 2015 Remedy Health Media, LLC. All rights reserved.

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