Why aren’t sex and gender issues higher up the agenda in HIV/AIDS research?
That was the topic of a panel discussion I participated in on Monday 23rd July at the biannual International AIDS Conference, AIDS2012. Motivation for this session drew from the fact that women now make up over half of all people living with HIV around the world and are bearing the brunt of the epidemic. Introducing today’s plenaries, conference co-chair Diane Havlir announced “We cannot even begin to talk about ending AIDS when so much of the impact of the HIV/AIDS epidemic continues to be so heavily skewed towards women”. However, women are often under-represented in HIV/AIDS trials. As well as this, the evidence base rarely disaggregates outcomes by sex/gender; and that there is increasing evidence of sex/gender differences in progression of disease, responses to treatment, and in the socio-economic factors that differently affect the ability of men and women to access testing, prevention and treatment services.
So what can be done to build a better evidence base which will inform our ability to address the AIDS epidemic for both men and women? Panellists argued that it’s important to ensure authors, when reporting HIV/AIDS trials, disaggregate their outcomes by sex/gender. This would mean that, even if investigators aren’t able to draw robust conclusions from their study about differential sex/gender effects, the data will be available for future reanalysis by others. But indiscriminate subgroup analysis has problems: it’s been argued that “Of all the various multiplicity problems in clinical trials… subgroup analysis remains the most overused and overinterpreted”. Better, I tried naively to argue, to be mindful of these risks and make sure studies are designed from the outset to allow researchers to robustly investigate sex/gender differences.
Fortunately, there are already some great tools and initiatives out there to help make this happen. Londa Schiebinger of Stanford University presented the Gendered Innovations project, a set of resources to help researchers think about the complexity of sex/gender (not in itself a simple thing!) and to conduct studies which have sex/gender hypotheses fully built in from the start. Joy Johnson (Canadian Institutes of Health Research) showed how CIHR’s policy on sex/gender requires researchers who are applying for CIHR funding to indicate how their research designs include consideration of sex and gender issues. Is there a risk of researchers just arguing that “this costs too much – we can’t be bothered?” I was delighted to hear that across the panel and the audience, the answer was a resounding NO: sex and gender sensitive research will be essential to combating the burden of HIV/AIDS in both men and women.