Notes of exclusion: the US Conference on AIDS, 2015

Earlier this year the Best Practices Policy Project contacted the organizers of the 19th Annual US Conference on AIDS to inquire as to how we might convene a panel or event about the impact of HIV related issues and policies on sex workers and people in the sex trade. During our initial call, we explained that sex worker lead organizations are now creating the first national level report on these issues and wanted to share our progress during the conference. Despite follow up communications to numerous USCA representatives in the months that followed, we never received any formal reply and not one of our applications for scholarships to attend was successful. The financial barriers to attending are significant: for all intents and purposes costs preclude any member of a sex worker lead organization from attending or even applying to attend. In order to even apply for scholarships, small and minimally funded organizations like BPPP are required to pay a fee of $250 or more. The conference registration fee itself is $800 and a sandwich bought at the conference site costs $18. Even though we received no support to attend some of our representatives–Derek Demeri of New Jersey Red Umbrella Alliance, Sharmus Outlaw and members of SWOP USA and chapters–have found a way to enter the event. The USCA belatedly responded to pressure from sex worker organizations to provide space for one panel Sex Worker Visibility and the United States’ National HIV/AIDS Strategy which conference organizers scheduled on the last day of the conference at 8.30 am (Sunday morning). Please join us on social media to learn more about the presentations #nothingaboutuswithoutus #USCA2015 #sexworkerrights


From our USCA2015 diary: Yesterday advocates attending a “listening session” on national policy and decided to ask questions rather than remain silent about the systematic exclusion of sex workers from HIV policy arenas and funding. The respondents from the Center from Disease Control (CDC) cite histories in which people in the sex trade–and people profiled as such–quite rightly resisted surveillance, in order to justify the current exclusion of sex worker leadership and community from vital decision making processes in 2015. Resistance to surveillance involving criminalization, arrest, mandatory testing, and the public release of personal health information by ill-informed health care providers–all issues our current community based research project has documented as affecting sex workers–is no reason to erase the decades of sex worker lead struggle to define our own destiny in regards to HIV policy and initiatives. In fact, our work and leadership is highly relevant to policy makers and service providers who still grapple with how to embrace rights based approaches inside the US and catch up to the rest of the world. The following transcript of the exchange was created by SWOP USA for Derek Demeri of NJRUA.



Derek Demeri: I’d like to ask the CDC why sex workers continue to be excluded from all of your activities. You guys do not reach out to any sex worker organizations. You don’t collect any information about sex workers. I mean, the WHO recognizes that you can’t address HIV without addressing sex workers, so where are we?
Janet Cleveland, Deputy Director, Prevention Programs, Division of HIV/AIDS Prevention, CDC: So, you’re right. We currently don’t have anything on our case surveillance forms that would identify a sex worker as such. In terms of categories of persons. And I’m not aware that we’ve had any discussions to include that on our core surveillance reports. That’s certainly something we can take under consideration. Again, surveillance is going on at the medical level, so clinicians would actually have to document it. So it’s a two-step approach.
Eugene McCray, Director, Division of HIV/AIDS Prevention CDC: The only thing that I would say is I was around in our early days and this was an important part of our discussion. I think most of us realized that sex workers, sex work is considered illegal in most of the United States. And I can tell you now that the big discussion back in the day was unwillingness of providers as well as sex workers to have that information documented in their medical records and subsequently reported to national sources. Although we don’t have personal identifiers, this is a we’d certainly have to have with our state programs and make sure that we talk about the potential legal ramifications of it, cause I don’t think, I mean you probably know, how many states in the US legalizes sex work?
Derek Demeri: One
Eugene McCray, CDCSo I think that your point is a very valid one, but I think there, there were really good reasons in the early days for not doing it, So I think that your point is a very valid one, but I think there, there were really good reasons in the early days for not doing it, we certainly could revisit it, I don’t think that… 
Derek Demeri: Sodomy was illegal until 2003.
Eugene McCray, CDCThat’s right, that’s right… it was. But it’s a discussion that we certainly have to have with folks the the the health jurisdictions as well as communities to decide whether we move forward with that. um, we don’t have any of that information.
Janet Cleveland, CDC: So from the prevention program side, though, we don’t exclude abundant programs reaching out to the community uh, if that community has been epidemiological shown to be having impacted within their areas. So there may be community-based organizations we do fund directly who do specifically reach out to those populations within the jurisdictions that they are funded to serve. So, I just want to make sure that you were aware that we didn’t exclude that from a programmatic perspective, even though, nationally, we don’t collect the data.
Audience member: Isn’t that kind of a paradox, though, they have to show the EPI data to get the funding but you don’t collect the EPI data, so how can they get the funding?
Eugene McCray, CDC: Maybe just, one assumption that you’re making is that all data that’s collected locally gets reported to the CDC. There’s a lot of local programs that collect data, and, especially CBOs that have information about populations that they serve that we never know about and maybe even at the state level never even know about. So and there are instances where people have made a very cogent argument for including certain populations in their, in their program portfolio and they have local data to support that. And and this happens in other arenas as well. And I’m thinking more about the work we’re doing And and this happens in other arenas as well. And I’m thinking more about the work we’re currently doing to look at communities that are potentially vunerable to HIV related to injecting drug use. We rely, we will encourage states and local jurisdictions to look at data that we may not have on a national level. And help us work with them to decide whether they should be doing more to address HIV in those populations, in the drug user populations if they have certain characteristics that put them at great risk for having an HIV epidemic–having a growing HIV epidemic. So we really encourage people to use their local data. We are trying to best develop tools, processes that we can share with local jurisdictions so they can start looking at their data in real time. Cause, we just can’t do everything at the National level, and it’s not timely. That’s just the reality…