Nothing about them, without them (Reprise)

My AIDS2012 experience kicked off early on Sunday morning in a standing-room only session on youth living with HIV. I was floored—both figuratively and literally (I was sitting ON the floor)—by the youth who spoke so passionately about their experiences transitioning out of pediatric care and taking control of managing their health as strong, HIV-positive young adults.

The youth catchphrase I have been hearing for the past year, from UNAIDS’s CrowdOutAIDS movement to AIDSTAR-One’s youth-focused technical consultation in Botswana in February—has been “nothing about them, without them.” This refrain demands that youth be included in conversations about policies and programs that will affect them. Indeed, my colleague wrote a blog on this very topic several months ago, following the aforementioned Botswana conference.

“Nothing about them without them.” Pardon my use of 1990s-teenager-talk, but DUH! Of course we should be including those affected by HIV programs in the design and planning process! This notion seemed obvious to me, so I was completely unprepared for the “a-ha!” moment that knocked me off my chair in a little interview room in the media center on Tuesday night.

Tuesday evening, I had the opportunity to talk with Nada Chayajit, the mastermind behind TLBz Sexperts, a virtual community in Thailand that uses social media to reach trans people with important HIV prevention and safe sex information. TLBz Sexperts grew out of a need for trans-specific HIV prevention services. Trans people are included in the at-risk population list, which speakers have been rattling off all week: men who have sex with men (MSM), women, sex workers, injecting drug users, youth, etc. However, as Nada showed me over our hour-long interview, trans people are often mistakenly bundled with MSM, when in fact, their needs are very different.

Take a trip to the health clinic, for instance. A health worker unfamiliar with transgender anatomy might not be able to share the specific safe-sex considerations of a neo vagina (post-surgery). This health worker may also refuse to use the trans client’s preferred female name because her identification card indicates that she was born with male anatomy. That assumes a trans person feels comfortable going to such a health clinic in the first place; trans people in Thailand frequently face human rights violations, gender-based violence, and stigma. I learned from talking with Nada that those best equipped to talk to trans people about human rights, self-esteem, and safe sex are—you guessed it—trans people.

I had only been thinking about the “nothing about them without them” refrain with youth in mind, but ultimately, this idea must extend to every at-risk population. Trans people know best what their peers need and want to hear about safe sex, just as youth know best what types of HIV services they need and when and where they want to receive them. That we need more leaders like Nada or the youth I met on Sunday morning goes without saying. But as we continue to face pressure to do more with fewer resources, we must also be careful not to “lop” programs together at the expense of reaching different at-risk groups and meeting their highly-specific needs. If we really are going to turn the tide together, then we must dialogue together: Nothing about them – trans people, youth, MSM, women, sex workers, injecting drug users, migrant workers, and so on – without them.

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