The Longreads Blog

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)

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So Many Food Writers Under the House-Made Polenta Sun

“Food has become entertainment,” Meehan said. As David Kamp showed in The United States of Arugula, a chef like Alice Waters can be a product of 1970s counterculture just like any musician. And Waters is much more likely to be available to talk about her motivations.

“Those of us who have pursued this course are on the pleasure beat,” Gordinier told me. “It doesn’t mean we partake of the pleasure the entire time. It means we’re interested in the way culture engages with pleasure, and what the pursuit of pleasure says about us. The defining pleasure of the ’60s was music. To some extent, the defining pleasure of the ’70s was film. The defining pursuit of our time now is food.”

At The Ringer, editor Bryan Curtis examines the rise of modern food writing and the confounding popularity of writing about food. Everyone’s doing it. Why is everyone doing it? Food writing is the new Applebees but at Lonchero prices, and something smells fishy. See? It’s harder than you think.

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My Mother’s Murder: ‘I am good at keeping secrets. I am good at telling lies.’

Leah Carroll’s mother mysteriously disappeared when she was four years old. In this excerpt of her book, DOWN CITY, Carroll reveals it took her years to determine that her mother was murdered by an organized crime syndicate as a suspected drug informant.

Most of the time my mom and I are a secret team, keeping secrets from my dad. She tells me we’re going to take the city bus because her car is getting fixed and this sounds like a great adventure. We take the bus to her friend’s house in Providence and she leaves me there in the living room, where I watch television until the room begins to darken.

I am good at keeping secrets. I am good at telling lies. I’m so good that years later, when I’m an adult trying to find out more about my mother’s life and death, I’ll have trouble with my own memories: Did I know we were on the bus buying drugs? Did I understand the danger we were in? Did I really believe we were in this together?

Another time, Mom drives me in Grandma’s car to a small house with long steps leading up to the front door from the street. She takes the keys from the ignition and tells me to wait in the car. She leans over and pats the space beneath the dashboard, telling me to get down there and stay until she comes back. “I’ll lock the doors,” she says.

In the real world, my mom’s body will remain off the side of the highway, undiscovered for five months.

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Drug Addicted and Autistic: A More Common Combination Than You Think

Photo by Kaushik Narasimhan (CC BY-SA 2.0)

Addicted and autistic? At Spectrum, Maia Szalavitz explores the unexpected biological and psychological commonalities of addiction and autism, and some new science that suggests that combination may be more common than you think.

Shane Stoner’s addiction began in 2008. He lost a factory job, his parents divorced, his father died — and then a relative introduced him to heroin. “I felt like heroin gave me confidence,” Stoner says. “I could get out of bed in the morning and do the day. No matter what happened, it made me feel like it was going to be all right.” It erased his constant anxiety.

Stoner, now 44, eventually entered detox in 2013 after he was arrested for stealing copper from an abandoned house. It was obvious at that point that he was addicted to heroin. But it would take several more years for him to get the diagnosis that truly helped him understand himself: autism.

The new label came as a relief. It explained Stoner’s sensitivity to things such as tags on his T-shirts, and his succession of obsessive interests. It clarified why he had such a difficult time fitting in as a child, his problems with roommates in college — and why he continued to struggle with social connections as an adult. “I can’t believe nobody ever mentioned it before, because I started thinking back and there’s pictures of me, like, 3 years old, and I’m honestly flapping my hands.”

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The Top 5 Longreads of the Week

This week, we’re sharing stories by Elizabeth Weil, Michael Hobbes, J. Oliver Conroy, Bob Shacochis, and Ben Schreckinger.

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Of the Parade, But Not In the Parade: The Mardi Gras Flambeaux

Flambeaux light the way for the Krewe of Orpheus parade. (Photo by Michael Homan, CC BY 2.0)

Louisiana Rien Fertel explores the complex history of New Orleans’ flambeaux — the men who carry the torches that light the way for Mardi Gras parades — in Oxford American. Perhaps unsurprisingly, race issues were intertwined with Mardi Gras from the festival’s earliest days.

That inaugural spectacle proved so popular that a second flambeaux procession, now doubled in size, marched about two months later, on April 6, to coincide with the twenty-fifth anniversary of the Battle of Shiloh, a day “generally celebrated as a holiday,” according to the Picayune, and the unveiling of the city’s newest Confederate statue, that of General Albert Sidney Johnston astride a marble likeness of his famed steed, the aptly named Fire Eater. Just as it had weeks earlier, this “carnival of fire,” as an unidentified reporter called it, paraded down St. Charles Avenue to Lee Circle, the centrally located traffic crossroads and commercial district that had been rechristened three years prior, at the height of Carnival season, to honor the dearly departed Confederate general. Though Robert E. Lee never crossed into Louisiana as commander of the Army of Northern Virginia—he likely visited New Orleans for a brief stay while soldiering during the Mexican-American War, decades earlier—the city honored him with a bronze statue, standing and facing north, a traitorous Golem ready to spring to life and defend the South from Yankee advances, atop a sixty-foot Doric marble column. Today, despite the skyscrapers that eventually mushroomed around him, Lee’s statue still manages, from certain vantage points, to dominate the city’s skyline, at no time more so than from the Mardi Gras parades, which all circle beneath his stony gaze.

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16 Documentaries by Steve Bannon

Partially filled movie theater
Getting Ready for the Movies via Wikimedia by Belinda Hankins Miller (Creative Commons)

Sean Nelson at The Stranger watched them all so we don’t have to.

It will surprise no one that the cinema of Steve Bannon consists entirely of conservative nationalist propaganda tracts designed to advance the values of the Tea Party movement, unacknowledged contradictions and all: small government, low taxes, militarism, isolationism, Christianity, self-interest, patriotism, contempt for America, everyone who disagrees with you is an elitist, immigrants are a threat, outsiders are the only real heroes, free-market capitalism is essential, regulation is tyranny, society is too permissive, Wall Street is corrupt, Democrats are hypocrites, liberals are fascists, Barack Obama is a fraud, and Bill and Hillary Clinton are worse than a thousand Hitlers. But above all, liberty. Always liberty.

Pro tip: Stop at the concession stand and get some Skittles before you start your film festival.

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The Ban, the Wall: Bearing Witness

Rose Marie Ascencio-Escobar's husband was detained when he went to check in with the Immigration and Customs Enforcement on Feb 22. Her husband has been in the United States since 2001 when he came from San Salvador without documents. (Marie D. De Jesus /Houston Chronicle via AP)

Reports say there is going to be another travel ban soon, perhaps even today. And so, standing on the precipice of our next great catastrophe, I have decided to take stock, as far as I can, of this thing we have wrought, which I can only describe as the new American carnage. Moreover (sorry about this) I would like to put forth my own obnoxious “all else is a distraction” theory:

In my opinion, this is the greatest story of the moment, and all else is a distraction. Think-piece-ologists have recently argued that the “real story” is the dismantling of our administrative state, or the lock-out of the free press from the halls of power, or the Russian oligarchy’s new influence on the Republican party, or so on. But, when the people of the future look back at us now, it seems to me that they will “little note, nor long remember” the exact form of our bureaucracy, or whether we took seriously our own promises to ourselves about freedom of the press, or whether Michael Flynn was actually colluding with the Russian ambassador rather than just wishing him a very very merry Christmas. These things will all be seen as incidental: goings-on as curious and inconsequential as Rudolf Hess in a biplane or Marat in a bathtub. I submit that, for the people of the future, all these stories will be incidental to the story of why we allowed our neighbors to be terrorized and rounded up.

So, I am making a small attempt to bear witness.

I am asking six questions.

Who has been detained?
Who has been denied entry?
Who has been rounded up?
Who has been deported?
Who has fled as a refugee from my country?
Who has been killed here? Read more…

We’re Gonna Need a Bigger Screen: On the Addictive Escapism of Video Games

Screenshot from the game "Incredipede" by Colin Northway (CC BY-SA 3.0)

In Vulture, Frank Guan, an avid gamer himself, digs deep into the appeal and addictive qualities of video games in an effort to understand the psychology that undergirds hard-core gaming — and whether it has an impact on or can predict our politics.

I wouldn’t trade my life or my past for any other, but there have been times when I’ve wanted to swap the writing life and the frigid self-consciousness it compels for the gamer’s striving and satisfaction, the infinite sense of passing back and forth (being an “ambiguous conduit,” in Janaskie’s ­poignant phrase) between number and body. The appeal can’t be that much different for nonwriters subjected to similar social or economic pressures, or for those with other ambitions, maybe especially those whose ambitions have become more dream state than plausible, actionable future. True, there are other ways to depress mental turnout. But I don’t trust my body with intoxicants; so far as music goes, I’ve found few listening experiences more gratifying or revealing than hearing an album on repeat while performing some repetitive in-game task. Gaming offers the solitude of writing without the strain of performance, the certitude of drug addiction minus its permanent physical damage, the elation of sports divorced from the body’s mortality. And, perhaps, the ritual of religion without the dogma. For all the real and purported novelty of video games, they offer nothing so much as the promise of repetition. Life is terrifying; why not, then, live through what you already know — a fundamental pulse, speechless and without thought?

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Conspiracy to Cover-up: Why We’ll Never Learn the Truth About the Attica Prison Riot

Photo by Michael Coghlan (CC BY-SA 2.0)

At The Morning News, J. Oliver Conroy reports on the aftermath of the Attica Prison riot and how the state doggedly covered up the truth: a grisly state-initiated mass murder in the name of justice and order. Of the 43 dead, 29 were inmates — many of them shot in the back or executed at close range as the state attempted to regain control of the prison.

Shortly before 9:45 a.m. on Sept. 13, 1971, the fifth morning of the Attica prison uprising, hundreds of prisoners milled in the yard, waiting with increasing dread for news of any developments in their ongoing negotiations with New York state authorities. At 9:46, they got their answer. A helicopter thundered overhead and began blanketing the yard in billowing clouds of tear gas. In fact the tear gas was partly a powder: C.S., a weaponized orthochlorobenzylidene compound then popular a world away in Vietnam, where the US military used it to flush Viet Cong out of the jungle and into the sights of waiting gunships. In footage of the Attica retaking, you can see a domino wave of people crumpling as the cloud of C.S. rolls over them.

The powder hung in the air like a dense fog, clinging to the prisoners’ clothes and working itself into their skin and lungs and further obscuring the vision of the gas-masked state troopers waiting for the signal to begin their assault. As the prisoners collapsed, choking and retching, the police opened fire. Over the next several minutes, officers poured hundreds of rounds of gunfire into the yard, including, a judge later estimated, between 2,349 and 3,132 pellets of buckshot. The prison yard was transformed into a charnel house. The prisoners, who had no firearms, were sitting ducks, as were the hostages that the police had ostensibly come to save. As hundreds of police and corrections officers stormed the prison, they sometimes paused to shoot inmates who were already on the ground or wounded. “Surrender peacefully. You will not be harmed,” a megaphone announced as unarmed prisoners were mowed down.

After the shooting ended and the gas cleared, National Guardsmen came through, collecting bodies and dumping them in rows on the muddy ground. The final death toll of the Attica riot and retaking was 43 people, including one corrections officer fatally wounded during the initial uprising, three prisoners killed by other prisoners, and 39 people killed by authorities, including 10 hostages—captive corrections officers and civilian prison staff killed by the troopers’ indiscriminate shooting.

The bloody outcome, it becomes clear…was the result, to a great extent, of conscious political choices by the state.

Mike Smith is someone who has spent a lot of time thinking about Attica. Smith, then 23 years old and recently married, had just started as a rookie corrections officer at Attica when the riot broke out and he was seized as a hostage…

Then the helicopter rose above the prison walls, showering everyone in C.S., and shooting started from every direction, and “all hell broke loose.” Smith was shot four times across the abdomen—by someone firing, he believes emphatically, a fully automatic AR-15—incidentally a rifle then issued to servicemen in Vietnam—and his arm was hit by a ricocheted pistol bullet. Noble, also wounded, pulled him to the ground. As Smith lay bleeding he watched prisoners and hostages shot to pieces around him.

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