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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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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…

Giving the Ultimate Gift: Granting the Wish to Die at Home

Photo by Alexandre Dulaunoy (CC BY-SA 2.0)

At The Australian, Andrew McMillen writes on palliative care as a critical service, and of the “power and the grace” required to care for those who are terminally ill and grant their final wish: to die peacefully, at home.

On an adjustable bed in a room towards the front of the house is Tony Huelsmann, a retired dancer, choreographer and dance instructor whose skills were once in high demand at schools throughout Melbourne and Brisbane. Sandra was one of his dance students. He was 30 when they met, seven years older than her, and it was love at first sight.

Born in Germany, Tony has spent much of his life in Australia. Now 80, he is dying from complications associated with several internal and ­external cancers, including a rash of angry red squamous cell carcinomas that have colonised the skin of his swollen upper thighs. These painful sores require daily dressings, performed by a personal care worker, while Karuna’s rotating ­roster of nurses help with symptom management, bed-baths, toileting and bedding changes, as well as emotional support for both husband and wife.

Since May, Tony’s world-spanning life has been confined more or less to these four walls while Sandra cares for his every need. At night, she snatches sleep where possible. It is their wish for Tony to die at home and they are both determined to see this wish fulfilled.

“A good palliative care nurse should be invisible,” she says, while navigating her hatchback between house visits. “You’re there to help them negotiate the process with friends and loved ones. The Dalai Lama says compassion should be selfless: it’s not about you, it’s about them. You’re a springboard. But it’s a real dance: you’re not a robot, and you go in with your whole self and heart open. We’re all emotionally involved, and the moment you’re not – when it becomes mechanical – I think you should quit.”

By midday Friday, Tony has lost more strength and lucidity. Swollen from the waist down, he has little control of his body. Today, for the first time, he is unable to use scissors to cut the tape that his wife uses to dress his sores. When Karuna nurse Kate Hooper visits his bedside, Tony clocks her prominent baby bump. A man near death meets a woman weeks away from giving birth. Pointing a shaky finger, he smiles and rasps to her, “How long to go?”

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Michael Joyce’s Second Act

All photos by Sam Riches.

Sam Riches | Longreads and Racquet | January 2017 | 19 minutes (4,882 words)

RacquetOur latest Exclusive is a new story by Sam Riches, co-funded by Longreads Members and co-published in conjunction with Racquet magazine’s second issue.

Michael Joyce climbs into his father’s station wagon on a Sunday afternoon, the light of southern California glowing soft and gold. Joyce is tiny and cherubic, his face freckled and full, his hair a shock of strawberry blonde. He is 12 years old and has already spent six of those years playing competitive tennis, and he’s become very good at it.

In another six years, Joyce will become the junior national champion. After that victory, he will hoist a heavy trophy overhead and cameras will pop and flash and reporters will shout questions in his direction, and his ascension, as a professional tennis player, will begin. In an especially vibrant era for American tennis, Joyce’s cohort will include Andre Agassi, Pete Sampras, and Jim Courier. He will play each of them, with varying levels of success, and at his peak he will be ranked as the 64th best male singles player in the world.

During his playing days, David Foster Wallace will write about him in his seminal tennis essay, “The String Theory,” later republished in A Supposedly Fun Thing I’ll Never Do Again: Essays and Arguments, and through that work, Joyce’s career will persist, a blip of his existence anthologized in pop culture. In the years that follow, at every tournament Joyce attends, someone will ask him about that story, about Wallace, and about that period in his life.

A wrist injury will end his career early but not his successes. He will coach Maria Sharapova for six years and two Grand Slam titles and become a known commodity as a coach and mostly forgotten as a player, a fact that will annoy him greatly, but also be inarguable.

On this day, though, none of that yet matters. Defeat had been meted out by another prodigious talent, another boy born with a natural inclination towards the sport. Joyce, at 12 years old, was not yet thinking about his professional future, he was not yet aware that his youth and working adulthood would blend together without interruption; he just knew that when he won, everyone around him seemed happier and he liked that. He liked the way his view of the world, from the back seat of the station wagon, seemed to grow larger and brighter on those days, the family joyful and contented, his father sometimes pulling off the road for a post-match ice cream.

This would not be one of those days, though. Joyce had lost. His opponent, a lefty, put heavy topspin on the ball. It was a style that Joyce had yet to encounter, and when his opponent walloped it back, deep into the corners, a distance, both literal and metaphoric, grew between the boys.

The resulting defeat was felt so strongly and shared between Joyce and his father, also named Michael, that they diverted from their regular route home, drove out to the edge of town, and pulled to a stop at a factory that manufactured ball machines. Joyce didn’t know this factory existed, he didn’t know how his father knew it existed, but soon enough a new ball machine was rattling in the trunk, and they were on their way home.

Years earlier, in the family backyard, Joyce’s father had torn down the tree house, filled in the swimming pool, and put up a tennis court. Joyce received instruction from famed tennis technician and legendary hard ass Robert Lansdorp and his father, who taught tennis in the army, would replicate the lessons at home.

Now, in the backyard, the machine stood in his father’s place, rapid firing balls that sliced and hooked and spun through the air, mirroring the shots that Joyce had missed earlier in the day. Joyce’s task was to remain there, outside, until he understood how to play every shot. For three hours, Joyce batted at the air, fought through fatigue, and ignored his body that was wilting with exhaustion.

Later, when his mother and sister returned home from a day of running errands, his mother stormed into the backyard. “What are you doing?” she shouted at his father. “The poor kid is exhausted.” It was then that Joyce took his first break, his hands now raw and red and blistered over, his frustration giving way to tears.

This is an unseemly side of athletics: the labor that is overlooked in the delirium of mass mediation, the absurdity that we ignore because it is ugly and alarming and unhealthy, but also necessary. It is very hard to go pro in any sport, and few sports are as isolating as tennis. On the court, there is nowhere to hide, no teammates to mask individual deficiencies. As a result, the life of an athlete, even a young one, has to be dwindled down to a singular focus, and then refined over and over again. Joyce did not yet fully understand why this level of sacrifice was required—but it wouldn’t be much longer until he did.

“When I was younger I almost felt like the happiness in the family depended on how I was doing in tennis and it probably did a little bit and that was the sad reality of it,” Joyce says. “If I won we went out for lunch and everyone’s happy. If I lose, my dad’s kinda pissed and my mom’s pissed at my dad. It’s a lot of pressure on a kid. It’s not a normal childhood.”

That day, in the backyard, with his mother’s help, Joyce learned that he had to stand up for himself. He had to be able to say no, his mother told him. He couldn’t please everyone, not all the time, and his self-worth couldn’t be dictated by wins and losses. This was a hard lesson to learn, of course, and Joyce describes that day, and his father’s course of action, as “a bit nutty,” but it worked. A few months later, Joyce played that same boy and won in straight sets.

Through the cursory nature of their careers, athletes learn of life’s brevity earlier than most and at another angle and a different depth. Joyce is now a father and husband, and the things that used to matter to him, matter less now. The priorities of his life have shifted, but tennis remains near the top and so does what he loves most about the sport: the game’s simple binaries, that there is one winner and one loser. On a tennis court, you are exposed and vulnerable, and you have to face whatever comes your way and face it alone. Joyce has come to enjoy that. He has viewed his life through the lens of tennis, his ambitions and desires distilled through its filter. His experiences have shaped who he is, sometimes in small, indiscernible ways, and other times in larger, sweeping turns. He grew up in the sport, and in public, and now, at 43 years old, Michael Joyce begins his second act. Read more…

The Top 5 Longreads of the Week

Photo: sashko

Below, our favorite stories of the week.

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Off-Time: Becoming a Widow at Age 36.

Longreads Pick

Christina Frangou writes on becoming a widow at age 36, after her husband Spencer died of kidney cancer, 42 days after diagnosis.

Published: Dec 20, 2016
Length: 32 minutes (8,122 words)

Off-Time: Becoming a Widow at Age 36

A palliative-care doctor once told me that we die cell by cell until enough cells succumb that we cross over a line. But if you are watching the person you love the most die, you track their breaths, not cells. When someone is dying, their breath slows. Ever-widening gaps form between the end of the exhale and the beginning of the next inhale. In that space, you, the watcher, wait to find out if the unimaginable has happened. You don’t know if this breath is the last one, or if there is another to come. You only know it’s the last breath when it’s too late to go back and tell them you love them one final time.

At The Globe and Mail, Christina Frangou writes on becoming a widow at age 36, after her husband Spencer died of kidney cancer, 42 days after diagnosis.

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Longreads Best of 2016: Arts & Culture Writing

We asked a few writers and editors to choose some of their favorite stories of the year in various categories. Here, the best in arts and culture writing.

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Tobias Carroll
Freelance writer, managing editor of Vol.1 Brooklyn, and author of the books Reel and Transitory.

Michael Jackson: Dangerous (Jeff Weiss, Pitchfork)

Earlier this year, Pitchfork began publishing Sunday reviews that explore albums released in the time before said site debuted. This, in turn, has led to a whole lot of smart writers weighing in on the classics, the cult classics, the interesting failures, and the historically significant. Jeff Weiss’s epic take on “Jackson’s final classic album and the best full-length of the New Jack Swing era” is the sort of narrative music writing that’s catnip for me, the kind of work that sends me deeply into my own memories, and leaves me rethinking my own take on the album in question. Read more…

Longreads Best of 2016: Food Writing

We asked a few writers and editors to choose some of their favorite stories of the year in various categories. Here, the best in food writing.

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Rachel Khong
Former executive editor at Lucky Peach magazine; author of the novel, Goodbye, Vitamin, forthcoming in July 2017, and the cookbook, All About Eggs.

Citizen Khan (Kathryn Schulz, The New Yorker)

I would read anything by Kathryn Schulz, and this story makes a perfect case why. Ostensibly it’s the story of a man named Zarif Khan, who in 1909 found his way to Wyoming from the Khyber Pass, and made a name for himself selling tamales (the name: “Hot Tamale Louie”). Khan was a recognizably curmudgeonly chef (God forbid you put ketchup on his burgers!) of the sort writers reliably profile today. But “profile” doesn’t even begin to scratch the surface of what this goosebump-inducing story is. Woven into this tale are captivating tangents—about Wyoming’s inclusive beginnings, the various histories of naturalization (and denaturalization), tamales, and Muslims in this country (a history that goes back so much further than Trump would have you believe)—that turn out not to be tangents at all: the heart of this story about tamales and burgers is a story about America, and the immigrants that make it. In Schulz’s hands it’s skilled and quietly hilarious. The story felt fitting when it was published in June; it feels even more essential now.

At Tampa Bay Farm-to-Table Restaurants, You’re Being Fed Fiction (Laura Reiley, Tampa Bay Times)

I read this story about food fraud slack-jawed. Laura Reiley’s basic premise is this: when you go to a restaurant advertising “local” or “farm to table,” it’s not only possible but highly likely(!) you’re being lied to. Years of working in restaurant criticism made Reiley rightly skeptical of menu claims, and suspicious that more was afoot than frozen cakes passed off as homemade. For her story she systematically investigates restaurants in the Tampa area that make declarations about their ingredients—sometimes embarrassingly high-mindedly—that they don’t exactly see through. A lot impresses me here, like Reiley’s persistence, guts, attentiveness, commitment, and spy moves (she kept ziptop baggies her purse to secrete away fish to lab-test later). The piece’s focus is on restaurants in Tampa, but it makes a broader statement about our convoluted food supply chains, and what it means to be an eater and consumer living in our increasingly weird world. Read more…

Longreads Best of 2016: Here Are All of Our No. 1 Story Picks from This Year

All through December, we’ll be featuring Longreads’ Best of 2016. To get you ready, here’s a list of every story that was chosen as No. 1 in our weekly Top 5 email.

If you like these, you can sign up to receive our free weekly email every Friday. Read more…