ACT UP, Eat Hors d'Oeuvres? Strange Days, Missing Histories at CROI 2015
February 25, 2015
Cassie provides client-centered, low-threshold, sex-positive, gender affirming care at the Broadway Youth Center. The BYC is a one-stop shop for LGBTQIA youth experiencing housing instability (drop-in, GED, health clinic, talking support, and programming). Cassie's approach to their work is two-fold: to provide young people with health literacy, support navigating the medical industrial complex, enrollment in health insurance, and know your medical rights information to young people. He also supports provider trainings on how to work with and support young people, be gender affirming, and provide trauma informed care in clinical settings. She also supports AfterHours, an all ages, trans and gender-non-conforming drop-in night (clinical, legal, social support) at Howard Brown Health Center, and is a member of AVAC's PxROAR program.
Warren is one of the participants in a pilot program for community delegates at CROI. In addition to the CROI Community Educator Scholarship Program, AVAC and the Black AIDS Institute -- with support from the CROI Community Liaison Subcommittee -- are supporting a pilot program that provides an opportunity for additional community reps to attend the meeting. Delegates are mentored and supported with supplemental programming to help translate big science into accessible language for our communities. Expect regular updates from the meeting.
How'd we go from ACT UP to Nordstrom? No, it wasn't a protest against capitalism, consumerism or classism. It was the Conference on Retroviruses and Opportunistic Infections' 2015 reception. Against my best gut reaction, I went for the free champagne and "food" (aka: tiny trays of deviled eggs, mini chicken salad sandwiches, and truffle popcorn -- if I hadn't moved from Kentucky 6 years ago, I wouldn't even know what a truffle was). Champagne in hand, I stiffly shuffled around without direction. Afraid I'd spill it on a dress that cost more than three of my paychecks combined, I decided to down it quickly. Unsure where to walk, where to sit or what I was even doing there. I felt strange, yet looking around that didn't seem to be the sentiment reflected by anyone else.
Anxiety, and anger -- which I do a good job of turning into sadness, started rising up my throat. I might cry in front of all these people I thought to myself. Cry for a movement that feels separated from people's experiences. For the 23 year old girl with a CD4 count less than 200 and her three beautiful children, for the 22 year old who was almost murdered by a date but who's only need at the moment was trying to replace her ID, for the 19 year old boy who told me he didn't need to start PrEP because soon his parents would accept him, invite him back home, and stop withholding his health insurance, and for the man I encountered three hours earlier who was roughly rejected by asking for spare change. I had to stop myself. All their stories were running through my head. You're close to the entrance, I told myself. All you have to do is walk down the escalator, past the Jimmy Choo's and then you'll be out.
Out front I took a deep breath. Exhaled my roots into the ground and called love into my heart. A man walked up to the entrance. "This is a private party, you can't come in" Nordstrom's security stated. Man walks 200 yards away. The security follows him. "This is private property. You have to leave. Go on now, get out of here." The streets are private property. I threw up in my mouth. Swallowed it. But I did nothing else. I was/am ashamed.
Is this what the movement looks like from cutting edge science and biomedical interventions? Fancy meals on pharma money while we drop comments in our speeches about "social determinants" and "resource poor areas" and "racial disparities". Erasing queertories with comments like, "CROI has always been a place that accepts community." Forgetting that folks busted through the conference doors in DC in the early 1990s, demanding to be included. I asked one presenter why they didn't include transgender populations in their data and they said there isn't any data, and we have very limited slides. They added that we need that data because transgender populations are at the highest risk. Don't tell me in the same breath that they are the most vulnerable population and that you couldn't include one bullet point in one slide about it.
For the record, the data says that the HIV infection rate in the trans community is 30 percent. That's 1 in 4 people who are HIV positive. Trans people are 49 times more likely to be HIV+ than their cis counterparts. The seropositivty rate in trans people experiencing homelessness is 22%. If we look at other "social determinants" we see that trans people are 1,000 times more likely to be murdered than cis people. That half of the trans population are victims of rape, and a quarter are victims of assault.
There is so much momentum, and it seems we could be so close to ending the epidemic. We certainly have the tools for it. PrEP works if you take it, and you don't even have to take it everyday. We literally have a pill you can take to prevent HIV, and in the city of Chicago if you're low income or undocumented, it's completely free. I was easily swept away by Galit Alter's engaging and very well articulated presentation on the path to a vaccine (I recommend you watch it), and we have proof of concept for a cure. But if trans folks are the most vulnerable population, and we don't have trans competent doctors then what does it matter? If we arrest or institutionalize poor, Black young people for attempting to access care at ERs, then what does it matter if we have the best treatment in the world?
If I've learned anything this week it's that science is hard, and humans are even more complicated. This week there has been no shortage of passion, knowledge and energy to end the epidemic, but there are some very clear ways that we are failing. If we want the "most vulnerable" and "most risky" populations to take PrEP, to care about a cure, to get engaged in primary care, to get on treatment then we have to provide gender affirming services, we have to get rid of security guards and police in our health care clinics. We need to affirm people's consensual pleasures. We need more youth centered healthcare spaces, and insurance companies need to survive on something other than capitalism.
This article was provided by AVAC: Global Advocacy for HIV Prevention. It is a part of the publication P-Values. Visit AVAC's website to find out more about their activities and publications.
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