The Power of the Positive
Activist Josh Robbins Taps Into Social Media to Educate About HIV
by John Francis Leonard
Photographed Exclusively for A&U by Josh Robbins
We speak to many wonderful HIV/AIDS activists and advocates at A&U—bringing their stories to our readers while promoting their cause. Recently, I’ve taken an interest in speaking with a new, younger generation of advocates and the experience has been both rewarding and eye-opening. These young people are not only effective at reaching those of their generation with a sex-positive message, they reach us all, be it those who are still negative with messages of prevention, the newly diagnosed, or the long-term survivors like myself. They have a firm grasp of today’s landscape of prevention and treatment, with all that is available to us now, and a clear understanding of where we’ve come from as a community. They are cognizant of the battles fought for the treatment we have today and well aware of the losses suffered early on in the plague. Recently, I had the opportunity to speak with one of these modern-day HIV/AIDS warriors, Josh Robbins. He is using and developing all of today’s tools like social media and video to get his message out to the masses. Whether reading his GLAAD-nominated blog, watching his videos on YouTube, browsing his website, or speaking to him about the work he loves, one message and one thing about Josh is clear: a positive attitude and message can change the game entirely.
Part of this attitude he conveys may simply be a regional charm. Josh is a Southern boy, having grown up in Tennessee between Memphis and Nashville in a conservative town that he describes as having a church on every corner. Like many of us today, he comes from a large, blended family, his parents having divorced and remarried in his early teens. But it’s a close family. He has a sister and two younger brothers from his father’s second marriage.
When you’re scrolling through your social media feed, I wanted there to be content about HIV that wasn’t boring or scary…
This support system served him well as a young man. According to Josh, as an adult, “I was a poster child for HIV prevention.” He was taking part in an HIV vaccination study when he tested negative in November of 2011. He tested positive for HIV in January of 2012. Josh says that he knows exactly when he became infected and by whom. “Some people do want to know and some people who do know, don’t,” says Josh. He was having sex with another man and, at some point, the condom came off. It was a mere ten minutes of unprotected sex because they were interrupted by a friend knocking at Josh’s door. It highlights an important point because neither man orgasmed: HIV can be, and often is, transmitted through pre-ejaculate. It was a hard lesson to learn. There’s a fascinating video on Josh’s YouTube page in which he filmed himself traveling to and from the clinic to receive his results. After getting the news, he flew straight home to tell his parents. Josh told me that when he broke the news to his father, the only thing he said was, “Keep living, son.” That message resonated and informs his outlook on his status today.
I asked Josh a question that I ask of every HIV/AIDS advocate I interview: “When people ask you what you do, how do you describe it?” Josh has a full-time paying job. He owns a small health marketing consulting agency. As Josh puts it himself, “By night I’m a social media HIV activist that is really just trying to encourage people who are living with HIV to keep living and living well…” How he achieves this is through a self-professed love of tech as a tool to reach his audience. One of his main tools is video, making use of the fact that he is a natural on camera, funny at times, always informed, and making use of his positive outlook and attitude. His videos on YouTube, especially his slickly produced and compelling series “HIV MINUTE,” have reached a combined viewing of 1.5 million minutes altogether. His popular blog as well as another webpage and two Twitter accounts also help keep people informed. He’s on Facebook and most other social media outlets with a combined 60,000 followers. “When you’re scrolling through your social media feed, I wanted there to be content about HIV that wasn’t boring or scary,” is how Josh describes it. But it doesn’t stop there. Josh developed the sticker pack. Those are little “stickers” that a user can attach to the top of a text conveying an image or message. He released a sticker pack on World AIDS Day last year on iMessage.
There are two HIV-related apps that Josh has developed. The first, ASK HIV, was the first peer-based HIV hotline available on iPhone. The other is DISCLOSURE+ and is the only way for HIV-positive individuals to help prove disclosure if falsely accused of criminal nondisclosure. He’s also published two ebooks and managed to get content published by both Apple News and Google News. As Josh puts it, “My curiosity as a techie or a social media nerd is the beginning of where the activism stuff comes from. I want to be the first.” In addition, Josh is building a career as a speaker. He talks about HIV-related issues and in addition has shown skill as a motivational speaker as evidenced in some of his videos. Josh is also currently involved as a spokesperson for Napo Pharmaceutical’s #MyHIVThankYou campaign. What Josh does with these many tools is convey information about how HIV is transmitted and how to live your best life with the virus when you’ve acquired it. It’s information that has great value for both the newly diagnosed and the long-term survivor. His messages about prevention and the many myths about transmission reach a growing audience of the HIV-negative as well.
Speaking with Josh, I soon realize that he is someone with definite opinions about HIV prevention and wellness. He doesn’t always follow the pack, however. I don’t always agree with him on every issue, but I was surprised by how much I learned and he changed my outlook more than once. When it comes to his strong viewpoints, however, Josh puts his money where his mouth is. He has a deep understanding of the issues he promotes. “I am constantly searching out information,” says Josh. “I’m on every list and database [dealing with HIV] that you can imagine,” he continues. He reads and disseminates the latest studies and reads medical journals in this quest for knowledge and knows what experts to go to with any questions he has or clarification he needs. He wants answers to his questions and says, “I’m not tied to any advertisers and I can ask honest questions about what is really important.” Take the notorious Martin Shkreli, nicknamed “Pharma Bro” by a disapproving public. Shkreli, an investment fund manager, bought the rights to the antiparasitic drug Daraprim and raised the cost astronomically. He was publicly vilified in social media and the press. Josh actually felt concern for him and was compelled to see if there was more to the story. He approached him on Twitter and requested an interview for his blog after introducing himself as an HIV advocate and Shkreli agreed. What Josh found out surprised him. Only 2,000 people in the U.S. take the drug with sixty percent getting it for free or for a penny. “No patient paid more than a $20 copay,” recalls Josh, “There were absolutely no patient access issues.” That quickly brought Josh to another point. “I believe that healthcare deserves to make money. If you have a brain tumor, do you want the smartest, most talented person in the world working on that medicine?” He asks. Many people believe that healthcare shouldn’t be monetized, but Josh is not one of them. Says Josh, “I think that it should make money. If the smartest, most talented people don’t make money, they’ll go into another line of work.”
Josh then surprises me with a question: “How do we know that condoms are effective? We don’t know.” He goes on to inform me that the condom is a device approved by the FDA for HIV and pregnancy prevention in penile-vaginal sex only. “I don’t have a vagina,” he laughs. Why have there been no studies for anal sex? He says it’s hardly surprising that there are still such high rates of transmission between men having sex with men. It’s worth remembering that Josh’s own infection was due to condom failure. It’s gotten him in some trouble with HIV prevention groups who feel that he is against their use somehow. He’s not. He is in favor of further studies, however, and much in favor of the use of PrEP as a means to thwart transmission. It also leads him to another concept that we as HIV-positive individuals are promoting and that is that Undetectable=Untransmittable. “It’s the ethical thing,” he exclaims, “it’s the truth.”
I close with another question I ask of all the advocates and activists I’ve interviewed recently. With all the cutbacks to HIV/AIDS research and support services proposed by this administration and the threat to the healthcare of so many HIV positive individuals, what are the subject’s biggest worries and concerns? Josh answers with much eloquence and his usual positive outlook. “ACT UP provided a great example of depending on each other while also putting great pressure on the government to do something. There has never been a greater time, in my lifetime, for all of us to love each other like family and do whatever we must do to keep each other healthy. Politics are politics, but love and support will beat them everyday.” I hung up the phone after my interview with this remarkable young man feeling invigorated, challenged, and with a greater sense of hope than I had before we spoke.
John Francis Leonard is an advocate and writer, as well as a voracious reader of literature, which helps to feed his love of the English language. He has been living with HIV for thirteen years and he is currently at work on his first novel, Fools Rush In. Follow him on Twitter @JohnFrancisleo2.