A New Campaign, HIV Equal, Seeks to Increase Testing and Move the Dialogue Beyond Positive & Negative
by Angela Leroux-Lindsey
Photos by Thomas Evans
Prediction: 2014 is going to be the year of magenta. Facebook and Twitter and Instagram feeds will be colored ecstatic pink, and everywhere, “status” will be reclaimed: Advocate. Congressman. Spiritual. Flawless.
The words “positive” and “negative” are not on the list—and that’s the point, says HIV/AIDS activist Jack Mackenroth [A&U, November 2010], co-creator of the buzzworthy new anti-stigma campaign called HIV Equal. “It was important that this campaign be all-inclusive,” he said. “It’s not about labeling an HIV status. It’s about the fact that we’re all equally valuable humans.”
Mackenroth, who has been HIV-positive since 1989, partnered with celebrity photographer and co-creator Thomas Evans to launch HIV Equal for the non-profit humanitarian organization World Health Clinicians, Inc. The concept behind the campaign is deceptively simple: Anyone who wants to participate is invited to pose for a glamorous photograph taken by Evans, and to choose an empowering personal characteristic that represents his or her “status.” (Mackenroth’s is “fearless”; mine might be “storyteller.”)
The photos are set against a vivid magenta backdrop, and models wear the bright pink “HIV=” logo as body art. Evans’ shots brim with life and affirmative energy, and the models exude self-love in their body language and in their individual statuses. The photo shoots, which take place all over the country, have a party vibe and by all accounts are an exciting couple of hours—and a wonderful way to support an important cause.
Here’s the rub: Every participant must first take an on-site HIV test. It’s a brilliant twist in social campaigning, where the holy grail of outreach is to get the target audience to take action—outreach initiatives often ask supporters to sign an on-line petition, donate money, or share a link, activities that take place in a virtual void that lacks the kind of human contact that engages supporters on an emotional level. It’s also notoriously difficult to capture and keep the attention of young people, a generation whose daily routines are inundated with information, and whose personal interactions rely heavily on social media networks.
HIV Equal completely sidesteps the hard-to-quantify effectiveness of isolated click-throughs and shares and instead recruits participants by offering them a fun and unique in-person experience with an on-trend takeaway: a gorgeous, professional photograph.
“The photo campaign attracts people to come in,” said Evans, “and maybe getting tested isn’t their first priority. But everyone has agreed to the test, and I think it’s starting a national conversation again. When people see that Congressmen and celebrities are taking part the dialogue moves beyond a positive or negative status.”
By subverting the label of an HIV diagnosis, HIV Equal aims to end stigma, and by requiring an HIV test as part of the experience, the campaign hopes to—finally—lower the number of new infections. According to the CDC, almost 50,000 people are diagnosed as infected every year in the U.S. An additional 250,000 people are already infected but have never been tested. Of this quarter million, ninety percent are under thirty-five. It’s a troubling set of statistics to encounter after three decades of education campaigns and public policy efforts designed to address these staggering numbers.
“This has always been a focus for us: how do we reach the youth that don’t take HIV seriously?” said Dr. Gary Blick, Chief Medical Officer and co-founder of World Health Clinicians. “How can we chip away at that 50,000 person-a-year infection rate? It’s been eighteen years since HIV went off the front pages. If you look at the demographics, the reason kids don’t get tested is because of the stigma associated with HIV. They do not get tested because they do not want to know. So we’re lightening up the idea of getting tested, normalizing the idea so that it’s no big deal.”
Of course, being HIV-positive remains a big deal, and HIV Equal makes a point to provide access to healthcare services for all participants, and every photo shoot and testing event is staffed with licensed professionals who make sure that everyone who gets tested is provided with up-to-date and accurate information about HIV and its treatments.
“A crucial part of the testing process is education,” said Dante Gennaro, Jr., the Outreach and Testing Coordinator for World Health Clinicians. “It’s so important that the person walks away with a new sense of knowledge about how to avoid getting HIV in the future, or if he or she receives a test back that’s ‘reactive,’ to link them into care so they can manage their viral load and be less likely to pass on the virus.”
All test results are confidential, and each participant has the option of taking a slip of paper with the test result home or consulting with a professional on-site. The only member of the HIV Equal campaign who has access to this data is Gennaro, who is certified to manage confidential material for World Health Clinicians’ database. Test results are ultimately relayed to the CDC as impersonal statistics stripped of their identifying details.
Already, the campaign has been a success: big names like Peter Staley, Greg Louganis [A&U, February 2008], Billy Porter, Congressman Jim
Hines, and Senator Richard Blumenthal have participated, and at the inaugural event in late October in Connecticut, the team photographed and tested more than 100 people—twice the expected turnout. And it didn’t take long for social media to make that number seem even larger: it turns out that Evans’ red-carpet-worthy shots make the perfect profile pic.
“Seeing my Facebook feed filled with my friends’ pink pictures was a magical experience,” said Mackenroth. “Showing publicly on social media that you’re standing up for something, that it’s important to know your status, is our goal. People are talking about it. One of the goals of HIV Equal is to let these conversations chip away at stigma. By participating in the campaign, you’re helping to improve the perception of HIV for everyone.”
It’s a savvy approach because it utilizes the ubiquity of social media after supporters have already taken part. Everyone who posts an HIV Equal photo is implicitly stating that he or she has been tested. The message is clear: it’s cool to know your status, and supporters of HIV Equal are part of a new wave of advocacy. We should all be fabulous and get tested.
Importantly, the scope of HIV Equal goes beyond the United States. World Health Clinicians was founded with a mission to stop the spread of HIV around the globe, and having an international infrastructure means that the campaign can effect change in countries struggling to curb high infection rates. Scott Gretz, WHC’s Executive Director, travels frequently to Africa with Dr. Blick as part of another WHC initiative called BEAT AIDS Project Zimbabwe, and says those experiences have a profound impact on their emotional outlook.
“Our efforts to reduce infection rates in Africa go back to 2000,” he said, “when Gary started treating our friend who was living near Victoria Falls in Zimbabwe. He and his wife were both positive and had lost their first child to AIDS at two months of age, but they still wanted to have kids. Gary told them to wait a little while, to take the meds he was mailing to them, and he’d tell them when to try. Now they have three children—the eldest is Gary’s godchild—and all three kids are negative, and they’re thriving. By preventing mother-child transmission, BEAT AIDS Project Zimbabwe hopes the next generation of kids can be born negative from positive parents, and here’s proof that it can be done.”
This incredible story is proof, too, that success is directly related to testing; and specifically, to testing campaigns that target the individual and not the provider. Efforts like the CDC’s “opt-out” approach, which recommended making an HIV test part of a routine doctor’s visit, were not successful. This kind of blanket solution overlooks the importance of having a doctor specializing in HIV treatment and care available if a person is diagnosed as positive (among other things). HIV Equal emphasizes how critical the moment of diagnosis is, and how important it is to provide informed emotional support and empathy in addition to clinical care.
By creating an environment that celebrates individuals for who they are, and by adding an element of glamour and self-indulgence, HIV Equal sets a new narrative: Who we are as people is much more important than our HIV status, and by uniting as human beings to end stigma and promote testing, HIV is a disease that is within our power to eradicate.
“I think that the photos will become so signature that in a year, people will see them and it will be a trigger for them to think ‘This person knows his status, maybe I should get tested,’” said Evans. “In the end it’s not just a portrait, it’s a portrait with a cause.”
Go magenta! Join HIV Equal at an upcoming U.S. photo shoot and testing event: March 2, 2014: HIV Equal will be at the Webster Bank Arena in Bridgeport, CT, from 2:00–6:30 p.m.
Follow HIV Equal on-line: Facebook: www.facebook.com/HIVequal; Twitter: @HIVequal; Instagram: www.instagram/HIVequal. For more information about HIV Equal, log on to: www.HIVequal.org; WHC: www.worldhealthclinicians.org; Hartford Gay & Lesbian Health Collective: www.hglhc.org.
Angela Leroux-Lindsey is a freelance writer based in Brooklyn.