Ryan Stillwagon of NORC at the University of Chicago sat down with AIDS Foundation of Chicago’s Jim Pickett to discuss his long involvement in PrEP advocacy and what successful PrEP messaging looks like. Ryan began by inquiring about Jim’s advocacy work priot to AFC.
A little personal history without going too into the weeds. In November of this year I will have been with AIDS Foundation of Chicago for 12 years. Prior to that, I did a six year consultancy with the Chicago Department of Public Health and in that I did a number of things that had social marketing aspects. I worked on a project called “The Faces of AIDS,” in which we ended up publishing two books, with people’s stories from living in the Midwest. Thirteen states in the Midwest, personal stories of living with HIV or impacted by HIV. I tried to draw the connections between their stories and policy issues, important issues for prevention care, housing, and so forth. We also had a travel photo documentary—huge portraits that traveled around the country, with people’s pictures with quotes that exemplified their story or helped paint a picture of what it’s like living with HIV. That was a great experience.
Also while I was there, we did a syphilis social marketing campaign. So I’ve been like the syphilis guy—when I started here there was a crystal meth task force, we did a crystal meth campaign and I was the crystal meth guy (laughs). I was the AIDS guy, the syphilis guy, the crystal meth guy, now I guess I’m the PrEP guy. Prior to the health department, I was not in public health at all, I worked for the gay press back when there was still a really robust gay press. We did a gay zine every week, it started off as Gag, then became Babble, and wound up as Gab – and I worked on that from 1993 to 1999.
I think I got a lot of my chops there. I mean, doing that zine we had to appeal to our constituency, which were LGBT people in the community, of all races. And we put out an issue every week. Fifty-two issues a year, year after year after year—never a break. And so I learned a lot, you know, how to appeal to people, how to communicate. So I think that all served me coming into where I am now.
When I started at AFC I was the Director of Public Policy, so that’s how I started here. But it quickly moved into prevention advocacy work. I’m most excited by prevention—new prevention technologies.
It just jazzes me. I like—you know, it’s got a level of danger. Care and treatment are not really controversial. But prevention, you have to deal with sex, drugs, and rock-and-roll. It’s all controversy—it’s moralism, it’s all kinds of things that aren’t always based on science. And it’s so incredibly important. So, I—I was just drawn to that, and AFC kind of let me find that space and I segued my role here into really focusing on advocacy for new technologies.
So, my prevention advocacy work was ongoing and then in 2012 the FDA approved PrEP. And for the first time we actually had something that we’ve been advocating for for a long time real, it was real, a thing to work with. So while the advocacy for new technologies continues, cause I don’t think having a daily-pill is the only thing we need to add to the sorta toolbox, but it’s been a lot of fun to divide some of my time, and spend much of my time on implementation activities. We’ve been advocating for this forever and how it’s real. How do we make it real, how do we get it to the people who most need it, how do we translate it, how do we support providers and consumers and—and all of it! So it’s been amazing.
So you mentioned that PrEP has been something you have been advocating for for a while, and the FDA approved it in 2012. Do you remember where you were at or what you were involved with when you first learned about PrEP?
Well when I first learned about PrEP it was probably the late 1990s—you know, when it was in trials. And I was skeptical, I thought “oh, isn’t this a great way for pharma to make more money!” That was my initial instinct—like, this was scary and gross. I think a lot of people have had that reaction. But it also piqued my interest, so I started to pay attention to the science, watching trials, and when the first big result came out, when the iPrEX trial reported (December 2010), and showed a positive result, you know, it was 42-44% efficacy or something like that. They published it in the New England Journal of Medicine. It was—you know, hell yeah! Something works! And it wasn’t that long before we got it approved. And along the way, we learned the drug could actually be up to 99% effective when used consistently and correctly. So yeah, I didn’t start off—I needed convincing, I was skeptical, and I’ve seen that same skepticism…once we had approval I saw many people have that same feeling, like, “this is a pharma plot—put everyone in the world on PrEP forever.” None of that is true. And, you know, it’s important to know pharma did not fund these studies. These studies were funded by the government and pharma provided drug. It was led by the government, understanding that people don’t use condoms all the time. If condoms were up enough, we wouldn’t be here, we wouldn’t have an AIDS Foundation of Chicago. They’re not enough. That’s basically how my feelings were from the beginning and how they evolved.
Talk a little more about how you became an advocate about this technology, and, you know, what were the hopes placed in PrEP and, also, who were the initial stakeholders that sorta bought into the idea of PrEP for HIV prevention?
Well what I think what’s so important about this technology is that it is the very first thing that we have that is in full control of the receptive partner, regardless of gender. It doesn’t require negotiation. And it is not used or taken around the time of sex necessarily. It is divorced from sex, it’s taken in what you might consider a “cool moment,” sex is considered a “hot moment.” For men, women, or trans people, so this, you know, is just like “wow, this is something that negative people can take control of. The very first trial result was kinda meh, right? It was like 42% efficacy. It feels a little meh. Certainly it’s better than zero. And lots of people weren’t using condoms and they were having zero efficacy—people weren’t using anything. So 42% efficacy is a lot better but as we moved forward, they dug into that data, and other data came from other studies—we started to see that “wow, if you actually use it as prescribed and take it relatively consistently, your rates of protection are very, very high, up to 99%, which beats condom-use.” It took time for that excitement to build. And then I think, you know, once we started to see that and then a number of organizations like ours—we weren’t shy about talking about that. I think there were a number of organizations that were more reticent, sitting on the side, a little unclear or unsure of the science. A little afraid of—in kind of a patriarchal way—the messaging of “oh my God, what if, if we tell gay men this they’re gonna all stop using condoms.” And my whole thing was “dudes, they’ve already stopped using condoms!” Here’s something that people are going to have protection where they didn’t have protection before. So, I think—there was a few of us, a few groups who were willing to kind of stick our necks out and talk about PrEP, and not pair it directly with the condom message. That was seen as controversial in the beginning. And now, most of us talk about it we are not automatically pairing it with condoms. We’re not saying you have to use condoms to make PrEP effective. PrEP is effective on its own for HIV prevention and that’s what it does. And if you want STD protection or you want options for pregnancy protection, condoms are an option there. On HIV, PrEP is incredibly effective. It does not need condoms to be incredibly effective. We can’t tell our communities who have given up condoms, “hey, we have this great new thing, it prevents HIV, and guess what? It’s gonna be a daily pill and we want you to use condoms with it.” What?! Why would anyone do that, that makes no sense in terms of how real people behave in the real world. The reasons we created PrEP, why we advocated for PrEP, why the U.S. government spends a billion dollars on vaccine research a year is because we want new things to prevent HIV. Knowing that lots of humans don’t use condoms. They aren’t the be all and end all for a lot of people.
The PrEP program isn’t just about a pill, it also includes regular STD screening, and treatment as needed, and that’s a really powerful form of protection for you and your community. A lot of STDs are not protected by condoms, and getting regularly screened is an excellent public health intervention. If we could get everyone screened a couple times a year, four times—I mean that would be huge! We would be uncovering all kinds of STDs and getting folks treated. And we’d bust the chains of transmission all over the place. The reason why STDs spread is because people don’t recognize symptoms or they don’t have any. Many of these things are a-symptomatic. You probably don’t know you have a rectal STD unless you’re screened.
Talk about how the Chicago PrEP Working Group formed. How did the idea of a sex-positive—sex-positive being the re-inclusion of pleasure in the idea of sex, while at the same time having the goal of the campaign as one that fights off stigma and dispels terms like “Truvada Whore”—public health campaign emerge? Who were the first allies of the working group?
We convened the CPWG in 2014 and it wasn’t specific to doing marketing or messaging, it was just—we recognized we needed a platform for everyone involved with PrEP in Chicago to connect. AFC and CDPH co-convened, recognizing there’s a lot of PrEP activity here in Chicago: we have PrEP advocates, we had people providing PrEP at clinics, we have world-class PrEP research happening at places like the University of Chicago, at the CORE Center, and Northwestern, and, you know, like all these things were happening and we didn’t know what each other was doing, here in our own city. We weren’t all around the same table at the same time. We thought, well if we want to do really well for people and improve access and awareness we have to come together as providers, researchers, educators, advocates—we need to be sharing information with each other and collaborating with each other, and knowledgeable of what each other is doing, and learn from each other. So we pulled together. It was an invite only kind of group at the beginning—we invited maybe 20 obvious folks who are involved in those domains to come together. And it exploded from there. We now have over 200 people in the group.
We wrote up a white paper that laid out what we thought was important for doing PrEP in Chicago. One of the key pieces that came out of that was a social marketing campaign. That we needed to do a campaign—there wasn’t anything out there. Gilead (the maker of Truvada, the only drug currently approved for PrEP) at that time—that has now changed, but at that time Gilead was not entering into marketing of PrEP. They weren’t commercializing it. And, you know, there were some small efforts. AFC had a blog and made some palm cards, and Howard Brown was doing some stuff—we were all kinda doing little things, but it was just little piecemeal things. And so we thought that we could combine our efforts to make a larger campaign that had a greater reach into the communities we served.
Social marketing was one of the things we wanted to tackle. We prioritized social marketing and then we came up with a strategy. We agreed we needed to have money to do this and we needed to have expertise. We knew right away that it would be great to recruit the help of an ad agency to help us develop the creative. We didn’t want to develop the creative on our own—it’s tricky, and we’ve all seen public health messaging that gets its wrong, or it has good intentions but comes across as not so relevant. We’ve all seen bad versions of public health messaging. This was so important and it’s still controversial—talking about this brand new paradigm for prevention, this revolution, how do we do this and how do we make this prevention option relatable to our communities? Our strategy was to start knocking on creative ad agency doors and say “do you wanna work on this hot idea that we have? We wanna promote PrEP to a couple different populations in Chicago who are vulnerable and we want help doing it.”
That process took over a year. We ended up partnering with four agencies in pro bono/volunteer capacities —sister agencies that are part of this global umbrella called Publicis—all connected through their employee LGBT networking group called Egalite. Egalite was the thread and the connective tissue. The agencies included Leo Burnett, Razorfish, Starcom, and Spark. We ended up getting incredible support on the creative development, the website development. We got experts on data, we got experts on digital advertising—just a plethora of support from these agencies.. So that’s how that evolved—it took a long time. And concurrently, we were knocking on doors to try to find money. So we got this great value on the creative side and the strategy side and building up the website. We still needed real dollars. A local foundation called Alphawood ended up coming in with a $250,000 matching grant. We met half of that match with a new grant we secured for our PrEP education and training work, and the other half came from individual donors – over $100k came from individual Chicagoans – which makes me misty just to say it.
How did you come up with the messaging?
We had looked at early science that revealed the importance of intimacy —there was a clinic in NYC that was part of a study that showed us the number one reason that gay men were coming and asking about PrEP was for intimacy, that was their motivating factor. That it would bring them more intimacy in their relationship or relationships— that is really powerful. PrEP is about intimacy it’s about connection, it’s about HIV prevention but the core value that people have toward PrEP is intimacy. As for condoms and the fear of HIV, those sorts of things were impeding intimacy for many of us—mental, physical, emotional connection. We knew we wanted to address that. I think we also wanted to correct years of sex-negative, risk-based, fear-based messaging that, you know, the global “we” were a part of—whether we all did it directly or not, we all fed into negative messaging. And part of it is just how the history of the epidemic had rolled out. Looking back on it now it’s easy to be the armchair quarterback or whatever and say “oh, we should have done this, we should have done that when you were in the middle of it.” Looking back we did some harm there. And we can—this is a new intervention that allows us to talk to people about sex in a way that is honest with them: sex is about pleasure, connection, and enjoyment and tingle, and—you know—these are the reasons why you have sex. Your first thought isn’t about HIV prevention or risk, it’s this thing that happens between people, and that thing is a good thing, it’s a part of life that should be celebrated.
We knew we wanted it to be sex-positive. We knew we didn’t want it to be about fear. We knew we wanted to be loving, but we didn’t want it to be just for couples. We wanted this to be for whatever kind of sex you have, whatever kind of sex you wanted to have—maybe PrEP can help you stay HIV free. That’s it, really.
While AFC has really taken a strong lead on marketing PrEP, we didn’t want this to be an exclusively AFC campaign, ever. That is why it was positioned in the Working Group, it grew out of talks from the Working Group, we developed a committee in the Working Group that helps lead this along, and, you know, sheppard it from ideas scribbled on paper to the final execution. And I think that’s what makes it unique—it’s a citywide collaborative thing, you don’t see this in many cities. There’s a number of players on board, all the big PrEP providers are onboard, the health department’s onboard, we’re on board. And I think that gives it a lot of power and credibility—it’s not one agency, it’s not soley the health department, it’s all of us, it’s a community of providers and people interested in PrEP who came together to do this.
So you wrangled in everybody—a lot of wrangling—and you get to Leo Burnett and now you have a social marketing committee. I remember that excitement, and it still is—but, you know, I guess let’s talk about the advertising itself and sort of the decisions that were taken to get to this point. You know there was a lot of really good, provocative, sexually explicit ads that were proposed initially.
Yeah, we really went—I think we went very far, and I think that was good for our process, because we wanted something that was going to be in your face, eye-catching—we wanted to break through the clutter, we wanted to break through all the years of clutter and the current clutter that, just, people are bombarded with. How are we going to get through to them when people are bombarded by ads—everywhere they look there’s advertising. Every moment of their day is advertising. So how do we break through all of that?
We did take our imaginations to the edge, very far. And at one point, we had a whole idea around playing off of raw meat—it was like, “keep love raw.” And we were gonna have models making out next to slabs of beef in a meat locker. We were actually considering it. There were people in the room who were very worried. But I think it was good that we went to the far edges. That we explored—we weren’t afraid to try a bunch of things. So where we ended up—it feels like everything we tried and all of those ideas are still there. While I was someone who was glad to explore the raw meat thing, I think we would have had much less appeal if we had people making out in a meat locker.
So you look at the ad and there could have been a lot of decisions, it could have been a picture, it could have been a cartoon, it could have been scenery—but the current ads are groups of people, together, represented in these ads are black gay men, women of color, transwomen. What went into that decision making? Why those bodies?
We chose the populations based on the epidemic, where the epidemic was most acute. Transwomen—highly vulnerable. Gay black men—highly vulnerable, rates going up. Black women—bearing the brunt of the HIV epidemic among women. Not as high in numbers but disproportionately impacted compared to other women. And so that was the tricky thing—we wanted one unified campaign that actually spoke to these different populations in a way that would resonate with them and not leave anyone out. I think that’s super tricky. Because it isn’t like they’re all that similar—they’re obviously similar in certain ways, but they’re also very different. So how would we do that? We all wanna catch desire or transmit love, and those feelings are universal. And if we could find a way to sort of exemplify that—you know we featured real couples, or real pairs— and they’re not all necessarily couples. They’re not models. Some are real couples some are not. This could be for someone who is in a relationship of a minute or fifty years, it doesn’t matter. And I think we wanted to play off of that tension that’s out there about prevention, and sex, so that using words like “transmit,” and “spread,” which have often had negative and scary connotations, because spreading HIV and transmitting disease, that doesn’t sound good. But then pair it with words like love, words like tingle, desire—the reasons why we have sex. Words about pleasure, words about intimacy, and that’s how those two things were paired together and those decisions were made.
Yeah, it kind of confuses the discourse…
With PrEP, HIV is out of the picture. We didn’t want this ad to be about HIV. That it was about something else. Cause people are turned off by constantly being bombarded with HIV terms. People who are vulnerable to HIV have gotten lots of messages about it. And they’re not always messages they’re interested in hearing over and over again—so how could we upend that? We wanted to speak to a different question: why do you want to have sex? What kind of sex do you want to have? How do you want to feel? And those feelings that you want to have are valid, pleasure is valid, wanting to feel pleasure, wanting to feel connection and intimacy—valid. If you don’t like using condoms that’s valid. It’s not to be a finger waging moment. It is like, “ok, you don’t like using condoms? Whelp, we have an option for you, here’s something you can consider for HIV prevention.” So that’s kind of how it happened.
Tell me a little more about PrEP4Love LIVE.
We have a whole PrEP4Love LIVE component where we do live functions that are fun and entertaining, and educational. It’s important to have live events. You know, you can have this beautiful campaign on the trains and in bars, on posters everywhere. But that’s still not enough—people need to be able to speak to each other. So we wanted to have events where people could do that. People want that human interaction. We have our PrEP ambassadors— the models we chose are community representatives. Part of the criteria was that they’re volunteers, or activists, or advocates. They needed to be active in their communities, someone who would be listened to or followed. So we bring them along and have entertainment, and food and other fun stuff. We have a PrEP4Love photo booth, where people can get their picture taken and be part of the campaign. We have PrEP providers in the room, with tables full of information. With the live events you can actually meet PrEP providers, and if you have a question you can ask them right there. Or you can at least make an association if you want to follow up later—you know they exist, you know that there’s human beings behind all of this.
Elijah McKinnon who is one of our model ambassadors and is also leading our community mobilization activities. He was involved with the creation of the creative for the PrEP4Love campaign, and he ended up being selected as one of the models. We don’t want the campaign to just sort of be pretty and kind of sit there. We want activities, we want to be at conferences, we want to be at fun parties, we want to be at a pool party, at a disco, wherever. So we have lots of little things we can do for that. We have a bazillion bar coasters, we have PrEP4Love popsicles—we stick a sticker on them and they’re a PrEP4Love popsicle now. We think of fun ways to keep the campaign going, and now we have these cute t-shirts that hopefully people will actually like to wear, and we’ll see it online and they will start conversations with folks, like “what is SpreadTingle, what’s PrEP4Love, what is that?” We want to continuously have PrEP4Love out there in the community in some form. We’re not satisfied with it just being kind of flat, you know?
The PrEP4Love campaign successes in the story you tell have been iterative—winning little struggles for acceptability, accessibility, getting the message to become visible, working with Leo Burnett, discovering new marketing opportunities. This occurred in an environment, globally, where there is a clear demand for PrEP by community activists and healthcare organizations. What wisdom or guidance could you offer here to groups that are trying to similarly promote a public health campaign? What learnings have you gained through this experience that can be exportable to other groups in other contexts?
Some of the things I think we did well that I would suggest to others is this: if you can get advice or support from professional advertisers, people who know how to sell anything, it is super helpful. We don’t have those direct skills in public health and sometimes it really shows. I think ad agencies in all kinds of places, small, medium, large markets like pro-bono activities like this. When we finally connected with our collection of agencies and came together, they were as excited about it as we were because they got to work on something that’s really meaningful, that touched them as much as it touched us. They were really into it and the freedom our project offered, more freedom and creativity than what lots of their regular clients offer.
Listen to your community, don’t do it by yourself. We didn’t do it in a bubble, and it took a long time, but the engagement was critical. I think having a collaborative effect, or making your campaign a collaborative effort is important. Different agencies and organizations bring different skills and different backgrounds to the discussion—as we saw in our group, we had health department people who would sound the alarm about STDs, and we had other people who were like “oh, STDs aren’t the major concern,” but it was a good tension, and having all those viewpoints come together I think made us stronger.
For us, using and getting funding that was not restricted was super important. I think you can do a lot with a little—we ended up having a bigger budget than some may have, but I wouldn’t be dissuaded by budget. I’ve seen interesting and creative things done around the world on little to no budget. So I wouldn’t be dissuaded by that.
Finally, I’ll say, the thing I think I’m really proud of is that we went into this full tilt on pleasure and sex-positivity. I think that felt scary for some people who are not use to that—public health departments aren’t use to putting out messages like that. I’m now starting to see a lot of campaigns embracing this, whether they are influenced by us or not, I know we’re all kind of coming along at the same time but you kind of see how messaging sort of changed over the last few years. I think there’s much more of this sex positive, the enjoy sex, it’s pleasure messaging—and not being ashamed of that, less shying away from that, I think that’s super important.
Wherever you are, you know your community. I don’t think there’s necessarily one campaign that fits everybody. What worked well for us—some of this could be translated into other places, maybe so maybe not, but the fact that it was organically done, we had a collection of agencies and individuals come together, that we casted with real people from our community. Real people who look like real people. And I think all of those things kind of came together and made for something that people want to get behind.
Do you think accurate representation is important for HIV prevention?
I think people need to see themselves, people want to see themselves. We got so much feedback—people were just blown away that they saw “themselves” at the 47th street stop on the Green line. That it wasn’t just in Boystown, where you would expect to see gay advertising. People were taking pictures of the campaign and posting. And Bev, our trans women model—she’s very popular on social media, I mean, the people who know her, they were just going bananas. She was the star of a bus shelter.
The communities we were trying to reach, I think they felt honored, I think they felt like “oh my God, there’s me!” We had so many people that were like “can I be in the campaign, can I be in the campaign?” We had people come to our PrEP4Love photo booth for events and had their pictures taken and ask “oh, will these be on the CTA next week?” I had to say, “actually, these aren’t going to be on the CTA but you can put them all over Facebook, you can do whatever you want!” They saw themselves. There’s something about it that feels community, that feels real. And they want to be a part of it.
Our models are absolutely beautiful, but they’re not perfect—it’s not this capitalist vision we are over-served. Perfection is—humanity, and all of our different iterations. We shouldn’t all have to look alike, we shouldn’t all have to have zero percent body fat and feature the same cheek bones, and the same lips, and the same six pack, and the same muscles or boobs. There is a vast array of body types and that is wonderful.
I also like how we portray gender in the campaign. We have gay and straight people, we have cisgender and transgender people men and women. And they all don’t necessarily jump out at you proclaiming those identities. There’s a sort of gender fluidity throughout the campaign which is pretty cool. Like life.
When is the next wave of public advertising?
We are back up on CTA throughout the month of September. We have ads on Red and Green line trains – in stations, on platforms, and in car interiors. Over 1,000 placements. I mentioned Black Joy on October 4, and we have a number of other activations planned. Plus, as ever, we are active on Facebook (facebook.com/Project RSP) and on Instagram (@PrEP4Love.) Stay tuned!
Thank you for founding the PrEP4Love movement, Jim!