Search Results for: health

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…

Gen-X: We’ll Win in the End.

Still from the 1985 movie, The Breakfast Club
"The Breakfast Club"/A&M Films, 1985

I know, I know, another screed from embittered Gen-Xers. Give us a chance, and we’ll happily tell you what we think of our siblings on either side of the gap. David Barnett takes a familiar swing from his middle seat in The Independent:

The millennials, on the other hand, see the moomers as a rapacious generation that’s pretty much ruined everything for them. They’re living too long, taxpayers’ money is gushing into looking after them. They’ve kept house prices high, meaning young people can’t afford to buy. Workplace pensions are rapidly becoming a thing of the past. Boomers are, by and large, Brexiteers and Trumpers. They remember when Britain was great, and think coming out of Europe will be a doddle. They want to make America great all over again.

It’s not much more than a snack, it’ll take you five minutes to read. But as a textbook Gen-X, it made me laugh.

Boomers live in the past and have ransomed the future. Millennials fear the future and are ignorant of the past. Generation X acknowledges what has gone before, learns from it, and resolves to shape the future into something better. We don’t throw our hands in the air and say the job’s a bust, let’s give up. We know we can’t go back to mythical halcyon days and we know we can’t just rip it up and start again. We work with what we’ve got and try to make it better. We change things from the inside out.

For what it’s worth, I don’t blame the boomers for all our woes any more than I’d say all millenials are vapid snowflakes. And I certainly don’t think Gen-X qualifies for some kind of savior status. I just like a good rant.

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Follow the Oil Trail and You’ll Find the Girls

Photo property of Union of B.C. Indian Chiefs.

Riayn Spaero | Longreads | March 2017 | 14 minutes (2,400 words)

 

Duluth, Minnesota was dank and barren. Ice and mounted snow covered Lake Superior, save for scattered pools of howling waves. I picked this time because the ships weren’t in and wouldn’t be for several weeks. It was, for the moment, safe to stand by that great lake and speak on the silent affliction it routinely ushers to Duluth’s shores—the very same affliction that will spread across four states and infect each Dakota Access Pipeline construction site. I was there to meet Sarah Curtiss, an esteemed Anishinaabe activist at Men As Peacemakers, who’d agreed to an on-camera interview to discuss the predatory violence on this lake and other locations throughout Indian Country, such as oil fields and pipeline camps, that threaten the lives and bodies of Indigenous women on a daily basis. She wasn’t my first documentary interview on this subject, yet my hair raised in anticipation of absorbing more horrific accounts and the immense responsibility of honoring her every word.

Curtiss shook my hand and sighed. Her exhale eased my nerves. “You wouldn’t believe some of the questions I’ve been asked,” she said. “I once had this woman, a reporter, say ‘Are you sure? Are you sure you’re Indian?’”

Curtiss is astute, so I would not put it past her to pop this icebreaker as a litmus quiz for non-people of color documentarians (or journalists), but for me that morning it was an invitation to an honest interview built on trust in our convergent, but different, American experiences as “other.” Her last name, Curtiss, her milk complexion and loose auburn curls were more Anglo than Disney’s Pocahontas, but questioning her blood quantum never crossed my mind. How could it? Being of color, I’d long resigned myself to what most American minorities from families spanning the skin color spectrum know: If one of the three race-defining elements (skin color, features, hair texture) is off stereotype, “Are you sure?” or “What else are you?” looms over every discussion with the uninitiated. But, Curtiss and I were initiated.

We met on a February morning as if we were sorority sisters from distant chapters executing an exclusive greeting in the form of her sigh that said, Thank God I don’t have to explain myself to you. It was unexpected, but I was grateful. We discussed her advocacy in the fight against the epidemic of missing, murdered, and trafficked Indigenous women plaguing North America; the crisis that led her to divulge, “I do not go a month without someone I have a personal connection to passing away.” More specifically, she spoke of her prominent role combating trafficking on Lake Superior ships that pass through Minnesota’s Duluth Port—the reason for my sojourn to the frigid Midwest.

On a 17-degree day with sharp winds blistering her hands and cheeks, Curtiss stood beside the great lake that keeps sweeping away her stolen sisters. She detailed injustices against many Native women who live unrecognized lives, invisible to all but those who mean them harm—demeaning, brutal harm—and introduced me to invisibility as a handicap, rather than a privilege of gods. Read more…

The Story of Heady Topper, America’s Most Loved Craft Beer

The Alchemist brewery's John Kimmich. Photo: Corey Hendrickson

Sam Riches | Longreads and Food & Wine Magazine | March 2017 | 14 minutes (3,489 words)

 

For eight years, until Tropical Storm Irene struck the village of Waterbury, Vermont, the corner of South Main Street and Elm was occupied by The Alchemist Pub and Brewery. It was, by most measures, a common small-town bar. The walls were chocolate brown brick. The barstools were steel and backless and topped with black leather. A pool table sat in the corner. The ceilings were high, and the lighting was soft. A cast of regulars helped fill the pub’s 60 seats. It was charming in its familiarity, quaint and comfortable, but brewing in the basement was a beer capable of inspiring obsession. It was called Heady Topper and since the pub was the only place you could buy it, Waterbury—home to just a few thousand—soon became a mecca for craft beer drinkers.

The pub belonged to Jen and John Kimmich. Jen ran the business side, and John handled the beer. They first met in 1995, when they were both working at the Vermont Pub and Brewery in Burlington. John had made his way there from Pittsburgh. He’d been enthralled by a home brewer and writer named Greg Noonan who was a pioneer in craft brewing, especially in New England, where he helped push through legislation that recognized the concept of brewpubs.

After graduating from Penn State, John packed everything he owned into his Subaru and drove to Vermont in the hopes that Noonan would give him a job. He did, and for a year John waited tables, coming in on the weekends for no pay to learn the trade alongside the head brewer. Then John became the head brewer. Jen was a waitress at the pub. After turning down John’s initial first-date offer, she came back a week later and asked him out. A month later they were engaged.

Two months after the Kimmiches opened The Alchemist in Waterbury, John, driven by an obsession with fresh, floral, hoppy flavors, brewed the first batch of Heady Topper. The immediate response from customers upon tasting it was bewilderment, followed by intrigue. Their eyes scanned the room, meeting all the other eyes scanning the room, all of them in search of an answer to the same question: What is this? “People were shocked, maybe,” John says. “They would taste it and go, ‘Oh, my god.’ They’d never had anything like that before. People really went nuts for it.”

At first, John didn’t brew Heady year-round. He would make it two times a year, then three, then four, tinkering with the recipe each time. He had other beers to make, like Pappy’s Porter or Piston Bitter or Bolton Brown. They were all distinct, unusually compelling beers, but soon word began to spread about Heady: It was a hit. The problem, if there was one, was that it was only available in the pub. Enterprising customers solved it by sneaking pints into the bathroom, where they would pour them into bottles, screw on caps, and then shuffle out of the bar, pockets bulging. The business and the Alchemist name were growing with rapid, radical speed, beyond anything the Kimmiches had anticipated—and then the storm came.

Irene arrived in Vermont on a Sunday afternoon in August 2011. It roared north from the southern end of the state. Waterbury’s usually calm and placid Winooski River, a short distance from the pub, swelled uncontrollably. The local waterways and tributaries overflowed, and the contaminated water rushed through town, absorbing sewage and sodden trash and heating oil, staining everything it touched. Trees and shrubs were unearthed or turned gray and brown, like they’d been doused by a plume of ash. Cars were flipped; bridges buckled and collapsed; houses were left twisted and roofless. In some stretches of the state, more than a foot of water fell.

From their home in Stowe, just 10 miles north of Waterbury, Jen and John and their son, Charlie, watched the storm unfold. When they got the call that Waterbury was being evacuated, John jumped in the car and drove down, powerless but determined to see the destruction with his own eyes.

By the time he arrived at the brewpub, the basement—where he had been brewing for eight years, where he stored the original recipes for more than 70 beers, and where he and Jen had their offices and kept the food—was completely under water. On the first floor, John stepped inside. The water was not yet waist high, but it was well on its way, so he worked his way to the bar and poured himself a final pint of Holy Cow IPA. Then, with the water rising at his feet, he raised his glass skyward and toasted goodbye to everything they’d built. Read more…

The Wait: Is There Such a Thing as a Good Miscarriage?

Photo by Michael Coghlan (CC BY-SA 2.0)

The due date was July 5. I let this day pass like all the others, without even mentioning it to anyone. By this point, a couple of days will go by without my thinking about the baby I would have had, about what all our lives would have been like. It’s a Sunday, and I spend the day watching my daughter play in a tiny pool shaped like a giant turtle. She climbs in and out, in and out.

At Lenny, Jessica Grose recounts the agonizing waiting period after an inconclusive ultrasound and considers whether there is such a thing as a good miscarriage.

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The Race to the Bottom of the Sugar Bowl

brown and white sugar cubes
Photo by minjungkim (CC BY-ND 2.0)

Beth Kowitt, in Fortune, explores food manufacturers’ race to find a sugar stand-in that ticks all the boxes: cheap, “natural” (i.e., plant-based), and actually tastes like sugar. Amid the science, stevia leaves, and sucralose, she takes a step back: if sugar is such a health hazard, why don’t we just… eat less sugar?

There seems to be an obvious solution to all of this that would be much easier for everyone: Why not just eat less sugar? “As we move away from sugar, we are facing this dilemma that nothing tastes like sugar,” says consultant Woo. We know, after all, that our expectations are not set by nature. In the U.S. products tend to be sweeter than in Europe. For example, a liter-size bottle of American Dr ­Pepper has 108 grams of sugar, vs. about 73 grams for the U.K. equivalent. Why not just drop the threshold in the U.S. market too?

Several of the big food and beverage manufacturers have pursued this path, vowing to cut sugar in their products. Coca-Cola says it has already reduced it in more than 200 of its sodas. For its part, PepsiCo has committed that by 2025, at least two-thirds of its volume will have 100 calories or fewer per 12 ounces. (A can of Pepsi has 150 calories, for example.) General Mills has begun slashing sugar in its cereals and yogurt. Nestlé and Dr Pepper Snapple have made pledges of their own.

The challenge stems in large part from what the rest of the market is doing. “They’re afraid that consumers will taste 20% lower sweetness and go to a competitor,” says DuBois. Paul Bakus, Nestlé’s president of corporate affairs, told me that the company has to walk a narrow line between being nutritionally superior to the rest of the market and not sacrificing taste. “We want to reduce sugar where possible as long as we don’t put ourselves at a competitive disadvantage,” he says. “How do you compete if your competitors aren’t following the process or rules or guidelines?”

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The Top 5 Longreads of the Week

Photo by SEIU 775 (CC BY-NC-ND 2.0)

In this week’s Top 5, we’re sharing stories by Michael Hall, Molly McArdle, Mehreen Kasana, Helen Hollyman, and an interview by Kate Harloe.

Sign up to receive this list free every Friday in your inbox. Read more…

The Needle and the Damage Done: ‘What kind of a childhood is that?’

Photo by Urban Seed Education (CC BY-SA 2.0)

At The Washington Post, Eli Saslow profiles Zaine, Arianna, and Zoie Pulliam — three kids 17 and under deemed “opiate orphans.” The Pulliam kids exemplify a generation of children whose parents have died of drug overdoses as a result of the opioid epidemic.

Nearly everyone in Zaine’s life had been anxiously monitoring that line for the past year and a half, ever since both of his parents died of heroin overdoses in April 2015. His parents had become two of the record 33,091 people to die of opioid overdoses that year in a national crisis that has been worst of all in rural West Virginia, where health officials estimate that overdose rates are now eight to 10 times higher than the national average. Middle-aged white men in this part of the country have lost a full year of life expectancy during the past two decades. Middle-aged white women have lost more than two years. The opiate epidemic has essentially wiped out an entire generation of health advances, and now West Virginia has begun to focus more of its resources on prevention and preservation among the next generation entering into the void.

These children are sometimes referred to by health officials here as opiate orphans, and three of the most recent ones live in a small house in South Charleston: Zoie, 10, who believed that her parents had died in their sleep; Arianna, 13, who was just starting to wear her mother’s old makeup; and Zaine, 17, who had been the one to discover his parents that morning on their bedroom floor, and whose grades had begun to drop ever since.

Madie, 53, had retired from her maintenance job at the public schools and moved into the house to help take care of the children after the overdoses. “Mah-maw,” they called her, and she told salty jokes, cooked their breakfast and slept in Zoie’s bedroom when she had nightmares.

But, on some nights, it was Madie who couldn’t sleep, when neither her doctor-prescribed antidepressants nor her occasional swallows of Fireball whiskey could quiet her grief or her rising anxiety. She had once struggled with addiction herself before getting clean. She had raised a daughter who had become an addict. Now she was responsible for three more children in a place where that same disease had officially been classified as a “widespread, progressive and fatal epidemic.”

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Weighing the Impact of Nationalized Medicine

Carol Von Canon, Flickr (CC BY-NC-ND 2.0)

When the ACA was passed in 2010, Ana Maria Garza Cortez could hardly believe it. She’d spent decades trying to help poor people in San Antonio get health care. She knew the barriers they faced because she’d faced them too. She’d grown up in West Side housing projects, and her family never had health insurance. She and her seven siblings didn’t go to the doctor when they were sick. “That was a luxury,” Cortez says. “My mom loved us, but we were poor. She would wait to see if whatever we had would go away.” If it didn’t, she would take them to the neighborhood clinic or, more often, the emergency room. Since Cortez graduated from Our Lady of the Lake University, in 1990, she has worked with nonprofits, usually in health care. She serves as the vice president of development and marketing at CentroMed, one of the city’s sliding-scale, safety net clinics, with 23 locations in the area, many in the city’s poorer neighborhoods. She became one of the leaders of EnrollSA, along with Guajardo and Joe Ibarra, the deputy state director and operations manager at Enroll America. Among the city’s health care advocates, Cortez is admired for her energy and passion. “We call her ‘Santa Maria,’ ” Guajardo says. “She lives for the community. It’s in her bones.”

Now that President Obama had pushed through a law making health insurance available, at least in theory, to everyone, Cortez was elated. She knew Texas needed help—the state had five million uninsured residents, more than any other—and her hometown especially so. Officials figured there were 300,000 or so uninsured in the city and surrounding Bexar County. Latinos make up 60 percent of the San Antonio population, but 75 percent of the city’s uninsured. On the South Side, which has a significant Latino population, rates of diabetes, hypertension, and obesity were higher than average. For generations, says Santos Hernandez, who grew up in the Rio Grande Valley and now works as an application counselor at CentroMed, many in the poor Latino population, rural and urban, have had a three-step system for dealing with illness. “First you go to church, light a candle, and pray. Second, you see a curandero. Finally, you borrow money and take your kid to the doctor.”

In Texas Monthly, Michael Hall surveys the Texans whose health has dramatically improved after receiving medical coverage through President Obama’s Affordable Care Act, and discusses the group who labored to get them enrolled. The question that lingers now is: what will happen if the ACA gets repealed?

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