HIV diagnoses among women of all races and ages in the U.S. have fallen in recent years—but despite those declines, the news is not all good, according to a new study published in The Lancet.
Beyond the bigger-picture gains, a closer look at the data reveals stark racial and geographic disparities in HIV incidence and prevalence—disparities also reflected in the COVID-19 pandemic. Specifically, Black and Latinx women continue to be diagnosed with HIV at far higher rates than white women.
“Any decrease in new infections is good news,” said Tonia Poteat, Ph.D., PA-C, M.P.H., co-author of the study and an epidemiologist and assistant professor of Social Medicine at the University of North Carolina at Chapel Hill. “What is not good news is the fact that the same racial disparities persist despite the overall decrease in new infections. We must take steps to address the unique HIV prevention barriers faced by Black and Hispanic/Latina women.”
Such barriers, said the study’s authors, include racism, homophobia, mass incarceration, gender norms, poverty, and violence against women—exacerbated by stigma and violence against women and that, collectively, stem from the inequitable systems and policies that together impede their access to HIV prevention and care.
The authors add, nonetheless, that the expansion of HIV prevention and care services alone will not end the HIV epidemic. That will require, they conclude, “eliminating the race, class, and gender inequities, as well as the discrimination and structural violence, that have promoted and maintained the distribution of HIV in the USA, and that will, if unchecked, continue to fuel the epidemic in the future.”
Behind the Numbers: Links Among Race, Access, and HIV
The study by Poteat and her colleagues highlights recent developments around HIV epidemiology, comorbidities, treatment, and prevention. It’s part of a six-paper series recently published in The Lancet investigating the ongoing challenges to ending the HIV epidemic in the U.S. Overall, the study found that from 2010 to 2016, HIV diagnoses in the U.S. fell by 21%, with substantial decreases for Black (25%) and Latinx (20%) women.
However, those encouraging trends are occurring against a backdrop of persistent disparity. In 2018, Black women accounted for a staggering 58% of all new HIV diagnoses among women, despite making up only 14% of the U.S. population of women. For that same time period, white women accounted for 21% and Latinx women accounted for 17% of HIV diagnoses among women.
If the current infection rates persist, based on estimates from a 2017 study published in the Annals of Epidemiology, one in 54 Black women will be diagnosed with HIV in her lifetime, compared with one in 256 Latinx women and one in 941 white women.
Women in Southern states remain impacted by HIV at a far higher rate than women in other parts of the country. Of the roughly 258,000 women living with HIV in the U.S., 50% reside in the South compared with 29% in the Northeast and much lower proportions in the West and Midwest. This increased susceptibility is tied to multilevel social and structural factors, including poverty, racism, homophobia, and, in some cases, worse health care infrastructure and access to health care, said Ada Adimora, M.D., M.P.H., the primary author of the Lancet study. Adimora is the Sarah Graham Kenan distinguished professor of medicine and a professor of epidemiology at the University of North Carolina School of Medicine.
Transgender women have a higher HIV prevalence rate than cisgender women in the U.S., especially transgender women of color. Black trans women (44%) and Latinx trans women (26%) have a higher prevalence when compared with white trans women (6.7%) and trans women of other races or ethnicities (9.8%). However, many trans women are unaware of their infection—in a 2018 analysis of participants from six U.S. cities, more than half (51.4%) of HIV-positive Black trans women had not been diagnosed.
For Women, PrEP Awareness and Uptake Remain Low
In this study and others before it, experts urge that ending the HIV epidemic will require more widespread, effective, and equitable implementation of pre-exposure prophylaxis (PrEP) recommendations for women, in particular Black and Latinx women.
Despite the expansion of PrEP use since 2012, uptake among women has lagged far behind that of men. In 2016, only 4.7% of PrEP users in the U.S. were women, and most of them were white. Meanwhile, white men continue to represent a majority of PrEP users. According to Centers for Disease Control and Prevention (CDC) data from 2018, while Black men and women accounted for approximately 40% of people with PrEP indications, nearly six times as many white men and women were prescribed PrEP as were Black men and women.
Studies show that Black and Latinx women face unique challenges in accessing PrEP, which in large part reflects the health care industry’s failures to reach them. A 2019 study published in the Journal of Acquired Immune Deficiency Syndrome found that among HIV-negative cisgender women, only 11% of Hispanic women and 14% of Black women reported being aware of PrEP, compared with 21% of white women. And while PrEP awareness was high among 201 mostly Black and Latinx transgender women in Baltimore and Washington, D.C. interviewed between 2015 and 2017, just 17% of those who had heard of PrEP had ever used it. The most common reason for not using PrEP was concern about interactions between feminizing hormone therapy and antiretroviral therapy.
Medication cost, stigma, and concern about potential side effects are among other barriers to PrEP use by women—as is racism. “For both cisgender and transgender women of color, medical distrust decreases likelihood of PrEP uptake,” said Poteat. “Given the long history of medical maltreatment experienced by Black and Hispanic/Latina women, health care systems will need to demonstrate trustworthiness in order to increase uptake of PrEP.”
Nevertheless, a recent CDC review of factors affecting PrEP implementation for women in the U.S. suggests that once informed about PrEP, women have generally been willing to use it—that is, if they are informed. For women, and Black and Latinx women in particular, it is far too often the case that medical providers are reluctant to prescribe or even discuss PrEP and other HIV prevention options with them.
“Sexual health care for cisgender women has been focused on contraception and prenatal care, with much less attention to HIV prevention,” said Poteat. “It is absolutely the responsibility of health care providers to initiate conversations about HIV with all women as part of any sexual health or primary care conversation.”