Helping people get PrEPared at USCA 2014

Health! Hope. Yes Gawd! Finally!

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Alan McCord, Project Inform
Matthew Rose, PxROAR
Pedro Serrano, Project PrEPare
Jessica Terlikowski, AIDS Foundation of Chicago
Lisa Diane White, SisterLove

These are just a few of the overwhelmingly positive responses we received from folks when we asked them about PrEP at a booth hosted by Project Inform, AIDS Foundation of Chicago, SisterLove, AVAC PxROAR, and Project PrEPare at this year’s United States Conference on AIDS (USCA). More than 1,000 service providers from all 50 states participated this year and we talked to a lot of them!

Over the course of the conference we asked individuals to share their thoughts about PrEP. We asked what is the first thing that comes into your mind when you hear PrEP? What excites you about PrEP? What concerns you about PrEP?

Each of us at the table talks about PrEP on a regular basis. We were ready to dispel myths, explain the science behind the clinical trials, and help people gain a deeper understanding of this powerful new prevention option.

We were blown away by the level of knowledge that folks came to the table with. They knew about PrEP. They understood how it worked. Some came from agencies that have already integrated PrEP education into their standard prevention risk reduction messaging. Others represented agencies that were exploring the possibility of setting up a PrEP clinic. Many raised practical questions about how, would, and could it work in their communities.

We learned that many clinics in smaller cities or in more suburban or rural areas have begun the

These developments contrast quite dramatically from what 2013 USCA participants said about PrEP. Most stated last year that very few providers in their localities were even discussing PrEP as a viable option. Instead what we heard this year is a clamoring for resources, tools, and support for program staff to ensure they have the necessary skills and knowledge to serve their communities. Many remarked that they simply don’t have the resources to train their staff. And we rarely heard anyone comparing, contrasting, or challenging condom use over PrEP use, or vice versa.

We anticipated more resistance than we encountered. Instead, folks raised practical, earnest, and important questions. How will my community make decisions about allocating resources to PrEP when the prevention pie is already so lean? What steps are being taken to ensure transgender people are a part of decisions being made about PrEP programs?

What can we do about access in the South where Medicaid had not been expanded? How can we ensure people who are undocumented can access PrEP when they are ineligible for health care through the Affordable Care Act? In response to these questions, we shared that Gilead has a patient assistance program that is open to people who are not documented citizens, but can provide evidence of their US residence with utility bills or a library card.

Others shared what the new tool meant for them personally:

• 12:00pm every day.

• More protection for my guy.

• PLHIV in sero-different partnerships further empowered to have families they want.

• Magnetic couples (heart)

All of this isn’t to say that every USCAer was fully supportive of PrEP in this early adopter phase of rollout. We did hear from a few people who are uncomfortable with being on the front end of a new intervention, fearing missteps along the way. Some urged that we slow the PrEP train down until more data are known about adherence and side effects in the real world. Others expressed concerns that people will not take it correctly; they will stop condom use or not use them as much; and that we will see a rise in STIs. Yet for the most part these individuals were willing to engage, listen and ask for more information. We also heard from few people who decided that PrEP was not for them due to concerns about their own individual adherence or reluctance to take pills.

In short, the dialogue was honest and open and respectful. Such characteristics are critical to successful implementation of this new intervention. The PrEP tide is turning. People aren’t just lukewarm about PrEP anymore. They are saying with greater frequency, “of course I know” or “of course I’ve heard”. The tide is turning. People are moving past “what are you talking about?” to another level of “let’s figure out how to make this work.” There are robust discussions happening all over the country as people begin to develop and figure out their communities’ response to PrEP. discussions around implementing PrEP services. We heard this from providers in Salt Lake City, Des Moines, Kansas City, Albany, Rochester, San Antonio, and eastern Alabama, and from the states of Michigan, Alaska and Hawaii.