For trans people with HIV, visibility means better data

Today is the international Transgender Day of Visibility and I wanted to quickly share a statement I wrote for work to mark the occasion. I also had fun designing a graphic visualising the concept of ‘trans data’! Of course, it goes without saying this post is inspired and enabled by the work of Teddy Cook, a powerful advocate for better representation of trans experience in research.

Recently Australia has witnessed an organised campaign of hate towards trans folks, seeking to deny the simple reality that trans women exist. This campaign seeks to constrain the ability of trans people to participate in public life, to use the bathroom, to take part in sport, and to be heard in public debate. On this Transgender Day of Visibility, NAPWHA says: we see you, we believe you, and we are here with you.

There is little research into the HIV-related needs of trans and gender diverse (TGD) people in Australia. A landmark study in 2018 found ‘TGD people have been erased and excluded from HIV and sexual health surveillance systems in Australia. This has contributed to a lack of evidence about our sexual health, which has meant TGD people have been excluded from strategies, services, programs and campaigns. Despite this, we have continued to organise, strategise and mobilise for action.’ Today, NAPWHA calls for enhanced and ongoing efforts to ensure that TGD folks are made visible in the data sources that are a precondition for funding HIV programs and services in Australia.

Artwork: Daniel Reeders (2023). Please do not use without citation.

In that study, 2.6% of trans women participants reported living with HIV (Callander et al, 2018). Yet, in some Australian states, systems that capture clinical data force trans women (and nonbinary persons assigned male at birth) to be ‘recoded’ as men who have sex with men. It means we do not have an accurate picture of the trans positive community — its size, age, gender breakdown, years living with HIV, transmission routes, and most importantly for NAPWHA, the unmet health needs arising for this group.

On behalf of NAPWHA and our members, if you are a trans person living with HIV, here is an open invitation — make yourself known to us; let us get to know you and help us better understand how we can serve you. Join our call for better data and sharing of stories that give us a clearer picture of the positive trans community in all its diversity. Together we can challenge the invisibility and erasure that surround trans people with HIV.