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According to scientists who study women infected with HIV, statistics often paint an impressionist view of the lives of these women that misses the granular detail that tells the real story. The imprecise big picture is that most of this population is doing a good job at suppressing the virus, but facts gathered on the ground show that many struggle with issues of daily living that can make taking a pill to keep HIV at bay difficult.
In JAMA Network Open, researchers say that while a majority of the 1,989 HIV+ women they have been studying since 1994 have been able to control their virus — often on and off — challenges such as mental health, unstable housing, and lack of social support constitute ongoing barriers to effective and sustained viral suppression.
“Survival is a priority over putting a pill in your mouth for a number of our participants, and that is the public health challenge we must address,” says the study’s first author Seble G. Kassaye, MD, MS, associate professor of medicine at Georgetown University Medical Center.
“The truth of their lives is a lot less rosy than a few lines of statistics in a summary report can reveal,” she adds.
Kassaye, an infectious diseases clinician and epidemiology expert, is the principal investigator of the Washington Metropolitan site of the NIH-funded longitudinal cohort, the Women’s Interagency HIV study (WIHS), which has tracked many of the participants since it first opened in 1994. Four other WIHS sites (two in New York, Chicago and San Francisco) sites contributed data to this work.
WIHS was launched because of the recognition that HIV is almost as common in women as in men, in some populations, and that the biology and route of infection can differ. For example, in Washington DC, 1.9 percent of African American women are HIV+, compared to 4.4 percent of African American men. And 30 percent of HIV+ women who have been studied have no explanation as to how they became infected — “It was likely from heterosexual sex, perhaps with a man who may not have been aware of his status or did not disclose infection,” Kassaye says. “About a quarter of the women acquired HIV infection related to injection drug use, but that has become an increasingly less common cause of HIV transmission in the current era.”
In this study, the researchers took a longitudinal look at how well each participant kept their virus in check, and if they had trouble doing so, why? Each person was interviewed and had a blood draw every six months to establish viral levels. Specific levels indicated the virus was well controlled, or uncontrolled — a condition called viremia.
The researchers found that over 23 years of viral levels, 3 patterns or ‘trajectories’ were present: 29 percent were at a low probability for viremia, 39 percent were at intermediate probability, and 32 percent were at high probability. These superseded the usual cross-sectional or short term analyses that are often provided to capture viremia outcomes at the population level. More recently between 2015-2017, 71 percent of women achieved sustained viral suppression, including 35 percent of the high probability of viremia group.
“So, the rosy picture is that 71 percent of the women achieved viral suppression, but the granular detail tells us that some women are doing very well with 89.6 percent of the women in the low probability of viremia consistently suppressed in the recent years, but others are still struggling to get to viral suppression,” says Kassaye.
“Despite this struggle, I believe these women continue to resource their personal resiliencies to take their HIV medications as prescribed,” adds the study’s senior author, Michael Plankey, PhD, clinical infectious disease epidemiologist and professor of medicine at Georgetown University Medical Center.
While today’s HIV treatment is much less toxic than it used to be, and drug therapy is now suggested for anyone who is infected — and are therefore in much greater use — the barriers to daily therapy are real, she says. The researchers found that women in the high viremia group were more likely to report depressive symptoms (54 percent), have higher levels of current illicit drug (41 percent) and alcohol use (14 percent), be less likely to have stable housing (66 percent) and were more likely to die prematurely (39 percent).
“Just in DC, we see that the public health issues and stigma surrounding HIV remain endemic. My colleagues have treated generations of HIV+ women: grandmothers, their daughters, and their granddaughters. I have seen women with HIV who do not have any support, but if that person develops cancer, there will be a roomful of people coming to the clinic with her,” Kassaye says.
An answer to reaching universal treatment and viral suppression will require “wrap-around” services that can effectively address social and mental health issues,” she says.
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