Tag Archives: HIV/AIDS prevention

Social Networks Have Always Battled HIV/AIDS

Andrew Savulich / AP

When’s the last time you saved thousands of lives with a Facebook post? It happened last year to Greg Owen, recently profiled by Buzzfeed UK, a part-time bartender and club promoter from Northern Ireland who contributed to last year’s steep drop in new HIV diagnoses in London while homeless, underemployed, and himself HIV positive.

On 11 August 2015, Owen posted on Facebook to let his friends know that he planned to begin taking PrEP. A friend, who was HIV-positive and had been prescribed the drug as part of his treatment before switching medication, offered him some spare pills. Owen’s plan was to start taking them and blog about his experiences—a “blow by blow” account, he says, laughing…

The day after the Facebook post, he went to a sexual health clinic to double-check he was HIV-negative before taking the pills. Moments later, the nurse gave him the result of the rapid pin-prick blood test: It was positive. He had missed his chance to prevent it.

“I felt sick,” says Owen. “I said, ‘I need to have a cigarette.’ I was in shock.”

The following evening, aware that his friends on Facebook would soon be asking how he was getting on with PrEP, and while working a shift in a gay bar, Owen posted an update on the site telling everyone he was HIV-positive.

That single act triggered a chain of events that would change everything.

This single post caused Owen to become the unintentional poster boy for PrEP, or pre-exposure prophylaxis, also known by the brand name Truvada, a pill taken daily that can help prevent the risk of HIV infection. PrEP is available in the US under most insurance programs, including Medicaid, but in 2015, it was still unavailable on the UK’s National Health Service.

With the help of social media and a homegrown website about the PrEP regimen, Owen got word to thousands of people, garnering the attention of public health officials along the way. It’s a trajectory made all the more surprising by Owen’s total lack of resources and official support. Owen managed to turn his social contacts and personal commitment to HIV prevention into a movement—and by doing so, unwittingly became the latest in a long line of underfunded, grassroots activists who have battled HIV/AIDS through social networks.

The gay community confronted the illness in the early 1980s, when public health officials heard reports of a “gay cancer” spreading through San Francisco and New York. Before HIV or AIDS even had a name, gay men gathered in the Greenwich Village living room of playwright and activist Larry Kramer, where they met with Dr. Alvin Friedman-Kien, a dermatologist and virologist who told them what he knew about the disease. They could hardly believe what they heard.

Kramer’s living room became the headquarters for Gay Men’s Health Crisis, now America’s oldest AIDS organization, as HIV/AIDS began to decimate gay communities and disbelief turned to action. The group, and others like it, relied on social networking to get the word out about AIDS. They disseminated the latest research, raised funds, and provided critical support for patients at all stages. “Nobody paid any attention to it, recalls Kramer in an interview with Frontline. “We didn’t exist.” (Kramer later parted ways with GMHC and went on to help found ACT UP, an advocacy group whose in-your-face tactics drew national attention to the crisis.)

For early HIV/AIDS activists, grassroots organizing wasn’t a choice—it was a necessity. Scientific understanding of the virus was in its infancy, and a social stigma surrounded its victims. Researchers struggled to get enough money to finance their work and activists struggled for media attention. Meanwhile, the Reagan Administration ignored both groups’ pleas for public acknowledgment, and the president famously failed to even use the word “AIDS” in public until 1985, and didn’t give a major speech on the subject until 1987. There was no choice but to pick up the phone, make a flyer, or get out into the street.

Part of the problem was what sociologists call “social death”—the exclusion of people who are thought to be beyond saving because of their social status. But grassroots activism gave hope to patients, challenged stigma, and ultimately pushed forward research. Celebrities whose own social networks were torn apart by HIV/AIDS eventually came forward, and slowly, an international movement was born. Today, those living-room gatherings, phone calls, get-togethers, and grassroots marches have resulted in prevention like PrEP and better treatments for HIV/AIDS patients. And they still fuel efforts like Owen’s to make sure those interventions get in the hands of those who are at risk.

As Owen’s story illustrates, there are still big gaps in awareness despite the existence of better treatment and prevention options. In March 2016, the NHS ceased—before it had even started—the process of funding the drug.

The resulting publicity surrounding the decision, however, had an interesting effect: More and more people were becoming aware of the drug and, says Owen, seeking it out on IWantPrEPNow. Traffic began to double and triple. His social media presence swelled, fueling further traffic and media traction: appearances on the BBC, more radio discussions, more press coverage. Greg Owen was becoming Mr PrEP.

In response to NHS England’s decision, all the major HIV charities joined forces to fight it. A series of meetings ensued. Owen was the only activist invited to attend, as every HIV specialist knew that he was the main link to thousands of people wanting the drug…

A legal battle commenced, brought by the National AIDS Trust, to counter NHS England’s claim that it was not their responsibility to provide PrEP as HIV prevention was the job of local councils. At each step of this process, as news reports described what was happening, traffic to IWantPrEPNow continued to climb.

By the time NHS England lost in the High Court in August last year, 12,000 people were visiting the site every month. NHS England swiftly appealed the ruling. Orders of generic PrEP kept rising… As the NHS stalled, an underground movement, facilitated by Owen, was in full swing.

The NHS eventually lost the appeal in November, and announced that it would provide the drugs for at least 10,000 people, but earlier that summer a panel discussion at the International AIDS Conference warned that global funding for the disease is still in danger of a “collapse” that could set back public health goals. If history is any indicator, activists won’t lay down their arms anytime soon. Like Owen, they’ll pick up their cell phones and carry on—even if their invisible labor goes unpaid and unrecognized.

Further Reading
The Epidemic of Gay Loneliness (Huffington Post Highline)
Dustin Lance Black, The Screenwriter Behind “Milk” and “When We Rise” on Coming Out as a Gay Activist (The New Yorker)

Read the Buzzfeed story

Unprepared: The Difficulty of Getting a Prescription for a Drug That Effectively Prevents HIV Infection

Illustration by Kjell Reigstad

Spenser Mestel | Longreads | December 2016 | 23 minutes (5,642 words)


I’m sitting on the examining table at Student Health in Iowa City, digging a nail into the cuticle of my right thumb, waiting for Robin, the physician’s assistant. Over the course of my grad school career, she’s walked me through a half dozen of these STI checks—swabbed my throat and rectum, handled my urine, drawn liters of blood, and sat patiently to answer my many questions.

She opens the door and sighs. “I’ve got good news and bad news.”

I hold my breath. My ex-boyfriend, Zac, has been my only partner since the last test a few months back, at the beginning of summer, while I was still in New York City. We both tested negative and always used condoms, but I’m remembering a conversation we had while eating in bed about a guy he’d gone on a couple of dates with a few months earlier. Zac was staring at the TV and fumbling with his hands.

“We were starting to hook up, and he told me that he’s HIV-positive.”

I’d dropped my samosa. “What?”

“No, no, no. He told me before anything happened. He said that him and his boyfriend had a threesome once, and the condom broke.”

A threesome and the condom broke.

I look down at my hand. At this point, I’m digging my nail into my knuckle.

“The good news is the tests came back negative.”

I exhale.

“The bad news is I can’t prescribe you Truvada.”

There is no rational reason for me to think I have HIV. I would have avoided this stress altogether if I weren’t interested in Truvada, a pill approved in 2012 to help prevent the contraction of HIV, also known as Pre-Exposure Prophylaxis, or PrEP. I’d heard about the drug at a party in New York and immediately looked it up on my phone. Of the 657 San Francisco residents the study followed for 32 months, zero tested positive for HIV.

“I want to prescribe it,” Robin says, pulling out a prescription pad, “believe me, but the doctor I work under won’t allow it, not until we have the right protocols.” She writes down a name and hands me the paper: “Try Dr. Nisly at River Landing. She runs an LGBT clinic on Tuesday nights.” In the past three years, she’s never referred me to the LGBT clinic, never even mentioned that there was one. As I fold the paper, I remember the first time I met Robin, right after I’d moved to this Midwestern college town from New York. I’d been on guard when she asked if I had sex with men or women or both. “Men,” I said, scanning her face for twitches, her voice for stutters. I waited for a loaded question or curt tone. They never came. Read more…