A mother who won't drink from the same glass as her HIV-positive daughter. A restaurant owner who fires an employee because he fears they will spread HIV to patrons. Gay men who no longer discuss HIV status or get tested because it's just too much drama.
These people are the targets of numerous campaigns across the country to destigmatize HIV. Now, with social media initiatives kicking into high gear, the programs are multiplying and garnering lots of attention.
Among the newest is HIV Equal, led by openly HIV-positive Project Runway contestant Jack Mackenroth and the non-profit group World Health Clinicians. Another is Healthline's own You've Got This campaign. Both encourage people to make public statements online about HIV.
Standing Up and Getting Tested
HIV Equal, with its Web site and Facebook presence, encourages people from all walks of life to get a photo taken at the same time they get an HIV test. The photos are posted with an “HIV Equal” sign emblazoned somewhere on the person's body. The word “Status:” is followed by whatever descriptor a person chooses, such as “caregiver,” “friend,” or “fabulous.”
The results of HIV swab tests, which are generated in minutes, are confidential. Eventually, Mackenroth said, his campaign will go on the road setting up mobile testing sites and photo shoots in cities around the country.
“It's a way of saying, 'We got a test, and everybody should know about their status,'” Mackenroth told Healthline. “We don't care if you're positive or if you're negative. It's not about status. It's about the fact that you got tested and are standing up for anti-stigma.”
Mackenroth and World Health Clinicians launched the HIV Equal campaign less than a week ago, but it already has more than 1,100 “likes” on Facebook.
Healthline's You've Got This campaign, where HIV-positive people can upload videos offering support to those recently diagnosed with the disease, has also received a powerful response in less than one month. More than 40 people have uploaded videos, with Healthline donating $10 to AIDS research for each video posted.
Celebrities Pitch In
Numerous celebrities have joined anti-stigma campaigns nationwide. Mackenroth lent his own fame to Healthline's You've Got This by uploading a video. With HIV Equal, celebrities such as model Nick Gruber and Congressman Jim Himes (D-Conn.) have been featured.
“Activists are great, but unfortunately we're a celebrity culture,” Mackenroth said.
Although campaigns target different groups in an effort to destigmatize HIV, statistics show where it may be needed most.
Young People 'Aren't Listening'
“The young people aren't listening,” Mackenroth said. “They're not scared, people aren't using condoms like they're supposed to, and fear tactics aren't helpful. Let's remove the stigma so we can talk about it. Clearly, with the infection rates among young people rising, we're not doing what we're supposed to be doing.”
Kevin Maloney, who runs a Web site called Rise Up to HIV and a “No Shame” anti-stigma campaign on Facebook, agrees with Mackenroth about the end goal of the campaigns.
“I think working toward the biggest thing—getting everyone tested and those who are positive into care—is what we all want,” he told Healthline.
Rise Up to HIV encourages people who are positive to publicly share their stories. The “No Shame” campaign uses pithy online posters to get people thinking.
“No Shame” campaign photos have reached more than 10 million people, received tens of thousands of comments, and more than half a million “likes,” with a page reach of up to 70,000 people a week, Maloney said. “The virility of these campaigns is not to be underestimated,” he said.
How Facebook Launched One Activist's Blog
Josh Robbins of Nashville, Tenn., writes a popular online HIV blog. He came out as HIV-positive on Facebook, and a couple of days later, he posted a video on YouTube of him receiving his test results live and learning that his viral load was well into the millions.
“Social media allows me now, as an HIV blogger for imstilljosh.com and as an HIV-positive activist, to offer encouragement and combat stigma via the medium and tool that I am most proficient in—digital media,” Robbins told Healthline. “And it's working. My simple online blog about my personal journey with HIV last month broke over 110,000 page views. But it's the e-mail and messages that I get from others living with HIV that really means the most to me. In my opinion, this is the most impact that I've ever had the chance to make.”
Some stigma campaigns are unfunded, one-person shows, while others get support from non-profit groups and even pharmaceutical companies.
Kyle Murphy, assistant director of communications for the National Minority AIDS Council, said most campaigns are well-intentioned, but some end up further stigmatizing populations that they target.
“NMAC works closely with campaigns from The Stigma Project and Greater Than AIDS, both of which do great work,” he told Healthline. “Generally, the most effective campaigns will be those that engage the public and empower individuals on the grassroots level to break down barriers and combat stigma. At the end of the day, what matters is that we are talking openly and honestly about HIV.”
Are Attitudes About HIV Changing?
Little data exists about whether these campaigns are improving public attitudes toward HIV. This may change with the implementation of the People Living with HIV Stigma Index, an international initiative that seeks to measure changing trends in stigma and discrimination experienced by people living with HIV. Fifty nations have already implemented the index, and the U.S. is currently in the process of doing so.
A 2011 report from the Henry J. Kaiser Family Foundation showed many Americans still hold negative attitudes toward people with HIV, but that the stigma has declined in recent years.
Healthline's HIV Awareness page on Facebook continues to be a popular place for lively discussions about the disease. Many people have posted their own stigma stories. Even today, some people still believe HIV can be spread by sharing a water glass or a toilet, according to the commenters. Others talked about losing their jobs because an employer learned of the illness.
Still, many, such as Jason McDonald, say things are getter better. “I feel like if I go to great lengths to hide my status than I am directly condoning stigma,” the Knoxville, Tenn. man wrote.