Changing the Narrative Around Women & HIV
by Hank Trout
A presentation at AIDS2020: Virtual, entitled “Women Powered Solutions: Changing the Narrative Around Women and HIV,” asked “Does current data collection capture the full impact of HIV on women?”
Jennifer Sherwood, MSPH, Policy Associate at amfAR, answered with a resounding “No!”
In her part of the presentation, Ms. Sherwood explained that women have historically been excluded from HIV-related studies. And when they are included in studies, it is “at too low of levels to be able to examine sex differences. At the outset of a study, researchers would have to purposefully design their study to be large enough to examine the differences between male and female participants—and then actually collect data on those differences.” She emphasized that although women comprise more than fifty percent of the world’s population living with HIV, they account for only 19.2% of participants in ARV trials, only 33.1% in vaccine trials, and 11.1% in cure research. In correspondence with A&U, Ms. Sherwood stated, “I think there are a few things happening here. Most are not blatant or intentional exclusion of women from studies but…at the root of this inequity is the continued assumption that men’s and women’s bodies are the same in many ways outside of reproduction, without adequately interrogating this assumption in all of our research. While this isn’t intentional, this is a form of sexism. When the ‘default’ body is a male body we are prone to make medical decisions that do not equally benefit women.”
On the exclusion of pregnant women from HIV-related studies, Ms. Sherwood told A&U that “This can look like opting not to include women in studies because of their ‘child-bearing potential’ if it is not known how a drug will impact fetal development. This is of course a safety consideration to be dealt with in the study protocol, but it is not a reason in and of itself to exclude women.”
Asked to point out a specific study that she found especially egregious in its exclusion of women, Ms. Sherwood said, “I think it’s really difficult to point to one study as particularly bad since this is really a systemic issue.” However, she gave as a recent example Gilead’s Descovy trials for PrEP, which included cis and transgender MSM and transgender women, but did not include cisgender women. “Because adequate numbers of cisgender women were not included in the trial, the FDA did not approve the drug for those at risk of HIV from receptive vaginal sex.” She continued, “Gilead’s decision has been seen as profit-motivated as there would have been additional costs to including cisgender women in the trials, and the majority of Gilead’s market share in the U.S. are men who have sex with men. The result…is another example of initial exclusion of women leaving us with less information and options available to meet women’s HIV needs.”
On the other hand, “There have been some positive examples in two recent trials of long-acting ARVs (cabotegravir and rilpivirine) which were able to attract higher numbers of female participants in the studies than expected. Researchers attributed this success to the fact that long-acting injectable ARVs may be more attractive to women because women more frequently report that they cannot be caught with pills by their husbands due to power dynamics and risk of violence. Injectable contraceptives are also common among African women and may contribute to women’s acceptance of injectable HIV treatment.”
Simply achieving 50-50 gender parity in data collection is insufficient, Ms. Sherwood asserted. When collecting and analyzing data from women, researchers must consider additional issues that affect women disproportionately, such as interpersonal and partner violence that targets women, poverty and unemployment, attacks on reproductive health rights, and the criminalization of HIV in many countries.
To remedy the situation, we need (1) HIV research that adequately includes women as well as research on women’s bodies in general; (2) sex and gender disaggregation in the collection and analysis of data; and (3) attention to outcomes that matter most to women and girls.
Asked to explain “outcomes that matter most to women and girls,” Ms. Sherwood stated, “Broadly I mean that in the HIV research world we are prone to measure the outcomes that matter for the researchers or the funders, which may or not be the ones that matter most for the populations themselves. This can mean that we miss key considerations for understanding how well the needs of the community are being met.”
“There are some lessons to be learned here about the kinds of things that we can do to make our HIV research work better for women,” she concluded. “This could mean considering gender power dynamics when designing new technologies or protocols, as was the case in these trials of long-acting ARVs. It could mean more purposeful recruitment strategies for women, or making research sites more women-friendly such as including things like childcare at study sites so that women can bring their children while participating.”
For more information on the work of amfAR, log on to: www.amfar.org.
Hank Trout is a Senior Editor of A&U.