Making Waves at AIDS2022

A number of Making Waves members are taking part in AIDS2022 this week in Montreal. Watch our Twitter feed for updates and retweets from 4M, Salamander Trust, the Ssozi Foundation, Positive Young Women Voices, Lucy Wanjiku, Joyce Ouma, Jacquelyne Alesi and our many sisters from other networks and organisations. 

Over the past years, some of us have been working with colleagues at Salamander Trust and the Transgender Law Center to analyse the content of abstracts accepted at the previous conferences, as well as the number of women and trans people living with HIV in all diversity as co-authors and/or co-presenters. At AIDS2022, we have a poster analysing AIDS2020 abstracts (EPF134 for those with conference access), narrated by Martha Tholanah and which our colleague Cecilia Chung presented in person at the Women’s Networking Zone. At AIDS2020, our poster analysed abstracts at AIDS2018 and compared them to AIDS2016.

The results are illuminating. The International AIDS Conference may seem to practise meaningful involvement and GIPA (greater involvement of people living with HIV). Powerful women and trans HIV activists have made their presence felt over the years – not least at the 1992 conference when women living with HIV took to the stage to protest the lack of focus on their issues, which led to the formation of the International Community of Women living with HIV (ICW). Women and trans people living with HIV have organised pre-conferences, side events, satellites, as well as the Women’s Networking Zone and other vibrant spaces in the Global Village (which is outside the main conference and open to all). They have demonstrated, marched and advocated. But when it comes to presenting research abstracts in the different ‘tracks’ of the main conference, opportunities for women and trans people living with HIV have been rare. And the research that is presented by others is often not disaggregated and does not focus on issues that are a priority for women and trans people living with HIV. Year on year the situation is getting worse. Conferences generate evidence which, in turn, shapes policies, programmes and funding. Without women and trans people living with HIV as co-researchers, and without ensuring there is research on topics that are important to women and trans people living with HIV, the quality and relevance of research will not be up to standard, and the WHO Consolidated Guideline on SRHR of Women living with HIV which states that women living with HIV should be ‘equal partners in research’ will not be adhered to.

The IAS President and Conference Co-Chair, Dr Adeeba Kamarulzaman, said on 29 July 2022, “To overcome HIV, we must re-engage and follow the science.” But how can we follow the science regarding the SRHR of women living with HIV in all our diversity and the gender dimensions which drive this pandemic if these issues just aren’t part of the research presented at the conference? The BMJ has written recently about the fact women scholars in Africa face substantial gender inequities in publishing in prestigious authorship positions in academic journals, despite there being a cadre of women research leaders across the region. Globally, women everywhere were seriously affected by the restrictions brought in to address the Covid-19 pandemic, and this had a detrimental impact on submissions to journals by women researchers. We appreciate that these issues are a legacy of colonisation and patriarchy. However, this is no excuse.

We have been building this evidence base about the lack of our meaningful representation and lack of the key issues that affect women and girls in all our diversity in this pandemic, and it is time for the IAS to change its policy around abstract criteria for acceptance. It has done this in relation to language (which we more than welcome by the way). It is time to do it to uphold the rights of half the global adult population living with HIV. As Vuyiseka Dubula said in the opening ceremony: “The voices of women living with HIV are not being heard in any AIDS conference – and it stops today.” Some academics, such as those at Imperial College, London, are already working with Positively UK and appreciating the power and potential impact of co-production of research with those most affected. It’s not new! It’s already out there. When will the IAS also follow the science and act?

Martha Tholanah and Alice Welbourn, with contributions from Fiona Hale and Emma Bell

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