I made this presentation because I think that it is crucial that both community activists and researchers address the gender gap in research as an urgent priority.
The above slide is really shocking. It is a search of academic papers containing the words HIV and Women in the title, and it shows that out of 15.000 papers produced every year on HIV, in the past 5 years, only between 500 to 700 are focusing on women, in spite of the fact that women are over 50% of the epidemic. The situation is stable and there doesn’t seem to be any increase in research focusing on women.
This slide shows that clinical studies are particularly bad at enrolling a representative proportion of women .
However we know that there are significant differences between men and women living with HIV: at medical and social level.
Another important reason why we need more focused research on women is because women are biologically, and socially very different from men. Our bodies and roles change dramatically throughout our lives from onset of puberty, through the reproductive years, to the menopause. We have far more hormonal changes. Focus on women and hormonal changes should includes Trans women who also have to use hormones during transition. Much more research needs to be done on how women, including trans women, are affected by HIV and ARV’s throughout our lives. Observational cohort studies are very well placed to do so.
The barriers I describe in this slide are actually barriers to access to treatment identified in a recent global review of women’s access to tHIV treatment commissioned by UN Women however I believe some of the barriers women face to access treatment are also barriers for involvement in research.
This is a slide about addressing the barriers women experience in engaging in clinical trials. Most of the solutions are not rocket science: like providing childcare, or having women friendly clinic hours. Also often women of reproductive age have been excluded from clinical trials because of potential theoretical harm to the unborn baby, if they got pregnant. However not all women want to get pregnant all the time, contraception should be discussed, and women who can potentially become pregnant shouldn’t be automatically excluded.
The Women Interagency HIV Study is an example of a long term cohort studiy among women living with HIV and vulnerable to HIV in the USA. It has been going on since the early ’90’s. It supplements routine clinical data with twice a year interviews and examinations. It has very good community representation in all research sites. It would be great to have something similar in Europe.
Needless to say meaningful involvement of women living with HIV in research starts at community level with capacity building. There is robust evidence that women have lower levels of treatment literacy compared to men. Many women see being involved in research as ‘risky’ – they fear they would be treated as guinea pigs. They have not had an opportunity of understanding the benefits of research, or how their health can be protected during research. Most women with HIV I have spoken to have never even been approached to be involved in research. And they wouldn’t know where to find out if there is any research that would apply to them, or if there is any research going on in the clinic they attend. I also want to stress the importance of safe spaces, and women only spaces to develop women’s confidence in treatment and research advocacy.
Obviously this presentation would have not been possible without the support and advice of other women advocates. as well as the collective experience that have been shared with me by Positively UK women’s group ‘The Women’s Room’ and by the activists from WISE UP+ , and doctors like Shema Tariq..