By Martha Tholanah and Fiona Hale
We’ve been part of a team submitting abstract proposals for a few AIDS conferences now, looking at how women living with HIV are represented and included in research and conferences. The AIDS2022 deadline for abstract submission is fast approaching – the extended deadline is February 4, 2022. In this post, we look back at our experiences of submitting an abstract to AIDS2020 which was approved as a poster exhibition, and the barriers our team faced.
AIDS2020: We submitted an abstract
For AIDS2020, our abstract was entitled ‘Less talking about us, more hearing from us: Why so few women and trans people living with HIV as speakers, oral abstract co/authors, and abstract presenters at AIDS2018?’ (co-authored by Martha Tholanah, Cecilia Chung, Alice Welbourn, Emma Bell and Fiona Hale).
Martha Tholanah was the presenting author. Martha is in Zimbabwe, and regularly faces connection challenges. So one of the co-authors, Fiona, submitted the abstract, using the digital privilege that comes from living in the UK.
Our abstract was accepted – but only as a poster
We were pleased to hear that our abstract was accepted, though disappointed that once again – ironically, given the title of the abstract – it was for a poster exhibition (On demand: E-Poster, Track F, PEF1894), rather than for a poster discussion or an oral abstract session. We were very glad to see that in the new virtual incarnation of the conference, poster exhibitions allowed for a 5-minute recorded audio presentation of the poster, which would be available on demand to registered delegates. This was a bigger speaking role than our previous posters had been given.
The poster guidelines – ‘patients’
When we received the poster guidelines, we were a little shocked to see that the only mention of communities was as ‘patients’ whose anonymity should be preserved. This is hardly representative of the activism and agency that is such an important part of the HIV response. Then again, perhaps this is in fact an accurate reflection of the International AIDS Conference and the opportunities for speaking roles for women and trans people living with HIV, given our analysis of AIDS2018 and the deeply disappointing findings that
· only 1.8% of women presenters self-identified as living with HIV
· only 2 trans abstract presenters self-identified as living with HIV
· only 9% of invited women speakers self-identified as living with HIV
· no invited transgender speakers self-identified as living with HIV (and only 4 invited speakers self-identified as trans)
· community co-authorship of oral abstracts was still very rare, with only 8% of oral abstracts being community co-authored AND of potential relevance to women living with HIV. That is 19 out of 225 oral abstracts.
Submitting our poster – beset by problems
Anyway, we prepared the poster, and Martha recorded the 5 minute audio presentation. And then Fiona tried to upload the poster following the IAS instructions, but realised she was not enabled on the system. As presenting author, Martha was the only person who could do this. But Martha was also unable to upload it. Technical support was available by dialling a US phone number – not very user-friendly or cognisant of the cost of international phone calls. Fiona made the call to the US, and asked if there was any way she could be given permission to upload the poster as the submitting co-author. No, she was told, that would not be possible. The very apologetic tech support – a woman – said that the problem seemed to be that Martha was trying to upload from a mobile phone. She suggested that if Fiona had Martha’s password, perhaps she could upload it as if she were Martha. Well, we are colleagues and friends, but this seemed a relationship step too far! Eventually, the tech support woman said she could upload it for us, if we signed a consent form and terms and conditions. We were very grateful, but really amazed that we’d had to do so much working around a system clearly not designed with community authors, poor internet connection, working from mobile phones, and international call costs in mind.
A scholarship for the presenting author – but access was a challenge
As a presenting author, Martha had received a scholarship to the conference. Brilliant! But when she expressed the need for support with data bundles to enable her to take part, she was told she would receive delivery of a gadget and a sim card, which would be valid only for the days of the conference. These never arrived. So our women’s collective made a Western Union transfer to Martha for data costs the day before the conference. Why the profit-making IAS was not able to do the same is a mystery – and how much was spent on international delivery charges for gadgets that never arrived is a question we have. A transfer of funds for data bundle costs as part of all scholarships would be a cheaper, quicker, more reliable, and more respectful way to cover this.
On the first day of the conference, Martha tried to log on, but couldn’t access. She is not sure why. She ended up spending the day watching the community-led HIV2020 conference opening sessions, and taking part in the (free) Women’s Networking Zone live session in the AIDS2020 Global Village instead.
Can AIDS2022 get it right?
Abstract selection: We would like to see abstract selection criteria recognising community co-authorship or community-led abstracts. Co-production of research is so important in the process of producing more effective outcomes for women living with HIV – but is still far too rare.
Poster guidelines: We can’t quite believe we have to say this, but please ensure guidelines acknowledge that people living with HIV are also researchers and authors of abstracts, and not just ‘patients’.
Uploading posters: Please consider that community authors may be uploading from mobile phones, and accommodate this.
Scholarships: We know the IAS gave 283 AIDS2020 scholarships to women self-identifying as living with HIV (16% of all scholarships to AIDS2020). We hope AIDS2022 can build on their experiences, including how accessible they found it, how supported they felt, and how many opportunities they had to speak.
Data costs: We urge the IAS to provide data bundle costs in a more appropriate and trusting way than by sending gadgets internationally.
From our experience, there is a lot of work to do to ensure there is meaningful involvement of women and trans people living with HIV as presenters, speakers and abstract co/authors at the International AIDS Conference, and proper recognition of their role, activism, agency and leadership. We hope to see this happening at AIDS2022.
Find instructions for abstract submission to AIDS2022 here. Note the extended deadline for submission is February 4 2022, with the scholarship application deadline the same day.
This post was internally peer reviewed by Alice Welbourn and Jane Shepherd.