By Bradley Allf, Features Writer, UNC Institute for Global Health & Infectious Diseases
Our understanding of human immunodeficiency virus (HIV) has come a long way since it was first named in 1986. Yet little of this new information about the virus, which still infects 50,000 new people each year in the United States, seems to have made its way into the general public. A research project out of UNC called 2BeatHIV is trying to change that.
Infection with HIV, which causes acquired immunodeficiency syndrome (AIDS) over time, was once a death sentence. But thanks to three decades of intensive study by researchers all over the world, HIV/AIDS has become a manageable chronic infection. With proper treatment, HIV-positive individuals enjoy a near normal life expectancy and researchers are hopeful that an effective vaccine could be developed in the coming years.
But no one, it seems, has told the general public. Despite landmark study results about treatment as prevention being released in 2011 and 2015 by UNC researchers, 44 percent of Americans believe that anti-HIV medications do not prevent the spread of HIV. The survey, conducted by The Washington Post and Kaiser Family Foundation, also found that more than a third of respondents (34 percent) incorrectly thought HIV could be transmitted by sharing a drinking glass, touching a toilet seat or swimming in a pool with someone living with HIV.
This has obvious repercussions for people living with the virus and the stigma that continues to be associated with it. The goal of 2BeatHIV is to get the public informed about HIV and invested in finding a cure for the disease.
The project, which is nested within UNC’s searcHIV working group, is headed up by Allison Mathews, PhD, a post-doc with a dual appointment in both the Institute for Global Health & Infectious Diseases and the Department of Social Medicine.
Mathews says the first step in the project was figuring out what 2BeatHIV’s target demographic would be. She and her team decided to focus on African-Americans from 18 to 35 years old in Durham, NC, a city where HIV infection is much more widespread that elsewhere in the state.
“We chose that group because they’re at the highest risk for HIV,” says Mathews. “But if you want to reach that demographic, you have to make the project relevant to them.”
Figuring out how to be relevant was one of the biggest concerns she and her team had when starting 2BeatHIV.
“How do you deliver information [about HIV research] in a way that you or anybody that doesn’t really care about HIV would still want to come and still want to learn that information?” says Mathews. “So I sought feedback from community members to ask them how they wanted to be engaged. The conversations started to center around ‘let’s do art events and music events and technology and use social media’—stuff people are already comfortable with.”
So the team started planning. They didn’t just want to host “HIV events”—they wanted to make events with broad public appeal, with community engagement around HIV cure research as one of the components of the event.
The first event, called “The Experiment,” was held in the Beyu Caffé in Durham. It was based around hip-hop.
“So hip-hop is kind of known for examining conspiracy theories. Like, they have conspiracy theories about the Illuminati, that kind of thing,” says Mathews. “So we decided to theme the event around that. We brought in hip-hop artists who came and participated in conversations with the community about conspiracy theories around HIV cure.”
These conversations examined some of the misconceptions people have about HIV cure, such as the idea that a cure already exists, but is being deliberately withheld by the government.
Participants then wrote down words and phrases based on the conversation and shouted them out to one of the hip-hop artists, who would freestyle rap using the words that were called out.
Angel Dozier, talent coordinator at Beyu Caffe and co-organizer of the event, thought that using hip-hop was a perfect vehicle for talking about HIV.
“I felt like bringing hip-hop into the conversation as another language was incredibly important,” says Dozier. “It was created by the marginalized to express their frustrations, express their inspirations, to pass along knowledge. And that’s how I see we communicated the HIV information in a way that was engaging to everyone.”
2BeatHIV has also been effective in engaging with celebrities to spread the project’s message.
This summer, 2BeatHIV hosted actress Sheryl Lee Ralph at their event “Red is the New Black Fashion Show.” Ralph, also a prominent HIV/AIDS activist, was featured alongside musicians, fashion designers, and community health organizations at the event.
“She was so awesome. I loved her stage presence and how confident she was,” says Alexander Glenn, who participated in the event as a performer. Shantel Evans, who also attended the event, learned a lot from Ralph’s presentation. “I knew the AIDS situation was bad, but I didn’t know it was that bad,” says Evans.
2BeatHIV intern Samantha Farley thought it was “wonderful to see [Ralph] using her celebrity status to advocate for a cause that is so beneficial.” This advocacy likely attracted people to the event that otherwise might not have come.
Other celebrities have also gotten involved with 2BeatHIV. Actors Viola Davis and David and Tamala Mann, and gospel singer Shirley Caesar all contributed to a 2BeatHIV video back in April at the Women’s Empowerment Expo in Raleigh. Rapper Bun B, who has collaborated with Jay-Z, has also appeared in a 2BeatHIV video.
But 2BeatHIV isn’t just trying to connect with nationally famous people. Says Mathews:
“It’s not just the national celebrities, it’s local people. The local DJs and rappers, and even a friend of mine who’s called ‘The Sex Educator.’ Everyone in the community knows him and he goes into the community and does non-traditional HIV-testing.”
Instead of doing HIV-testing at a clinic, Paul Weaver (known in the community as the Sex Educator) goes to clubs and barber shops to test people. “I got him to do a video too because people in the local community, people that I can’t reach on my own— they know him,” says Mathews.
One of the strengths of 2BeatHIV is its ability to utilize engagement around the project to further promote its message. Rather than existing as a static educational resource, 2BeatHIV encourages people to contribute to the project themselves.
“If you’re going into the community and telling someone, ‘you can shape the future of HIV cure research,’ they’ll say ‘I’m not a scientist, what can I do?’” says Mathews.
So the 2BeatHIV team tries to motivate people to use their own creative talents to contribute to the project. Almost every promotional aspect of 2BeatHIV, right down to its name and tagline, has been crowdsourced. The logo and many of the graphics were also designed by the public, often through contests.
Contests serve a double purpose. First, they help source engaging promotional content that the community cares about. And secondly, they make the project exciting for the people whose content gets featured by 2BeatHIV.
“Somebody submitted a poem—it was like a spoken word poem on ‘what does HIV cure mean to you?’ And then we pulled a quote from that poem and created a sticker,” says Mathews. “So that becomes promotional material and they’re like ‘wow that’s my poetry on something affiliated with UNC.’”
2BeatHIV also uses crowdsourcing for ideation through focus groups composed of community leaders in Durham.
Rita McDaniel, a leading HIV activist in the community, has participated in a number of these focus groups. She thinks that this community involvement is definitely one of the strengths of the project.
“I notice a lot of [HIV] events have the social workers, the doctors, the clinical trials people up on stage. And everybody else is down low,” says McDaniel. “You’re not really communicating at eye level with people that are actually experiencing the disease itself. Allison doesn’t do that. She puts us all on the same platform together. You’re not big ‘I,’ I’m not a little ’i’ and it works.”
McDaniel participates in the focus groups to voice her opinion on what’s going right and wrong with the project. She says having the opportunity for that open dialogue is what makes 2BeatHIV so unique.
“We haven’t had anything in this area like 2BeatHIV. So it’s new, it’s upbeat, it’s probably like me if I could ever wear some red bottomed shoes. It would be new for me, exciting.”
Local Focus, Global Reach
The ultimate goal of 2BeatHIV, however, is to use what the team learns about the community in Durham to build similar community engagement projects across SearcHIV’s field sites all over the world.
“I’m on regular calls with scholars in Guangzhou, China and Cape Town, South Africa about the project and the process of developing it and making it more popular and how they can implement it in their communities in those contexts,” says Mathews.
Although the specific projects implemented in these sites will manifest themselves differently, there are plenty of general lessons that 2BeatHIV hopes to learn from Durham.
“I think the broad impact is that we’re using this study as a prototype for how you can implement this in different contexts but using similar methods,” says Matthews. “I think that hopefully this is the beginning of turning this into an evidence-based practice. That would be the ultimate gold standard.”
The project is certainly off to a good start, having already reached nearly 200,000 people online, and partnered with more than 25 community organizations, just since August. Joe Tucker, PhD, is one of the principal investigators of the SearcHIV working group. He says Mathews, who he described in an email as a “superstar,” has done a great job heading 2BeatHIV.
“It is quite impressive how she has brought together diverse community stakeholders and sought their input and feedback,” he says.
As 2BeatHIV expands its reach globally, this web of community engagement will only continue to grow.