Search Results for: science

Popular Enough to Live: A Reading List About Crowdfunding Health Care

Postman76 / Flickr

I’m part of the 63 percent of Americans who don’t have money to cover an emergency costing $500 or more. I don’t own a car or a house, so in the unlikely event of the aforementioned emergency (knock on wood for me, please), my personal crisis would be health expenses uncovered by Medicaid. Like the people you’ll meet in the following stories, I too would turn to crowdfunding.

Everyone, in my opinion, deserves healthcare coverage, and crowdfunding shines a spotlight on the insufficiency of the United States healthcare system. It also demonstrates that the internet is far from democratic. Crowdfunding takes time, energy, and a knack for marketing. Not everyone has these privileges or skills, and when it comes to paying medical bills or seeking life-saving surgeries, that chasm can be fatal.

1. “Sometimes, It Does Hurt to Ask” by Caitlin Cruz (Digg, January 2017)

Just today, a trans man I follow on Instagram posted a picture of the letter he received in the mail saying his health insurance would not cover his top surgery. For trans and gender non-conforming people, the cost of life-affirming medications and operations are steep—financially, physically, and spiritually. According to GLAAD, 19 percent of transgender people don’t have any form of health insurance. Hormone therapy and gender confirmation surgeries can cost tens of thousands of dollars. Instead, many trans people have turned to the internet, using PayPal donations or hosting YouCaring or GoFundMe campaigns, to ask their friends, families, and total strangers for financial assistance.

2. “Is It Fair to Ask the Internet to Pay Your Hospital Bill?” by Cari Romm (The Atlantic, March 2015)

Donating to a medical crowdfunding campaign requires donors to be at once more intimate with and more judgmental of the recipients. At its most basic and most callous, the act of giving boils down something not unlike comparison shopping: Who, out of all the people who have shared their tragedy on the Internet, is the most deserving of money? And, before that, who can entice donors to click?

As medical crowdfunding has become more popular, so too has the idea of its so-called “perfect victim,” said Margaret Moon, a bioethicist and professor of pediatrics at Johns Hopkins University: the person whose inability to pay for their care came down to sheer bad luck—and bad coverage, if they had any insurance at all. “They’d done everything right, they’d explored all the possibilities and were still left short,” she said. “The people donating to these sites don’t know if somebody’s made a request because they just couldn’t figure out their insurance, or because their insurance failed them. Wouldn’t you be more willing to donate to someone who had played out their insurance?”

3. “Who Should Pay for Evan Karr’s Heart?” by Anne Helen Petersen  (BuzzFeed, March 2017)

Evan Karr is a a precocious 13 year old Kentuckian who was born with tetralogy of Fallot, a heart defect. Evan has had three heart surgeries, and at the top of Petersen’s story, he’s gearing up for a fourth.

4. “The Real Peril of Crowdfunding Health Care” by Anne Helen Petersen (BuzzFeed, March 2017)

Most of the successful campaigns on a crowdfunding homepage fall under the rubric of “fighting unfairness,” a designation that expands to include one of GoFundMe’s most successful campaigns of all time (for Standing Rock) but mostly signifies struggles against diseases that seemingly strike at random: cancer, genetic disorders, and other afflictions ostensibly out of the victim’s control. Such conditions are often referred to as “faultless.”

It’s far harder to fund so-called “blameworthy” diseases—addiction and mental health in particular—that are popularly conceived as either the fault of the victim or somehow under their control. You rarely see campaigns for adult heart disease, for example, or “getting my life together as a single mom”—both are viewed as the result of “choices” instead of “needs.” If there’s already a hierarchy of affliction and need in this country, then crowdfunding often works to exacerbate it.

5. “Go Viral or Die Trying”  by Luke O’ Neil, Esquire, March 2017)

Luke O’Neil’s feature for Esquire opens with an anecdote about Kati McFarland, a 25-year-old young woman with Ehlers-Danlos syndrome who turned to crowdfunding to offset the cost of medical care. McFarland garnered national attention when she confronted Sen. Tom Cotton about his perspective on the Affordable Care Act.

After reading several of these crowdfunding stories, I was feeling a little jaded. I couldn’t help but cringe at the following, from YouCaring’s director of online marketing:

“The secret prize for people who raise money on the site is they find out how much people care about them,” says YouCaring’s [Jesse] Boland. “The money is the primary ask but they end up being better off for having connected to their community, so they get a sense of peace and belonging.”

O’Neil also spoke to editors from Gizmodo, Uproxx, Upworthy, and the Washington Post about their experiences studying and spotlighting viral campaigns.

6. “Kickstarting a Cure”  by Noah Rosenberg (Narratively, July 2013)

Jimmy Lin is the founder of the Rare Genomics Institute, which he describes as “Amazon-slash-Kickstarter for science.” Lin’s organization matches families with researchers and geneticists from RGI affiliates and helps them raise money to cover the costs of expensive tests:

“The biggest thing we talk about with our team is, ‘If this was our child who was sick, what extent would we go to to help them?’” Lin says of RGI’s efforts. “If this was our kid that was sick, this is exactly what we’d do.”

Kim Stanley Robinson’s Cheerful Novel of Climate Change

Hachette

Kim Stanley Robinson is the rare sci-fi novelist that deals in utopias, rather than dystopias—government scientists are often the heroes of his novels, and their quick thinking and bureaucratic efficiency often save the day.

His latest book, New York 2140, takes place not at the moment of catastrophe—in the year 2100, sea levels rise and flood New York so that a majority of the city is 50 feet underwater—but 40 years later, as most city-dwellers do what they’ve always done, and simply gotten along with it. At New York Magazine, Robinson talks with Jake Swearingen about why he made a novel about climate change with a positive outlook.

I was expecting this very dystopian, grim novel. But it’s remarkably cheerful! It’s like one of Dickens’s happier novels, or Les Misérables where it’s this exploration of a city from the sewer system up, through all these different characters.

I thought of the book eventually as a comedy of coping, and to do that I picked a time, or perhaps 40 years after the disaster itself. If it was set in the midst of the catastrophic flood in 2100, the disaster would have dominated that work. It would not have been the comedy of coping — it would have been the disaster of refugee creation.

But I think, at some point, science fiction has to imagine the people who come after, when the situation will be natural, whatever it is. If that natural situation that they’re coping with is that new part of Manhattan that resembles Venice, there will be good parts to that as well as bad parts. There will be beautiful parts as well as moldy, horrible parts. So I wanted to convey that as part of the vibe of this novel.

Read the interview

The Top 5 Longreads of the Week

This week, we’re sharing stories from Peter Waldman, Garrett M. Graff, Rachel Aviv, Catrin Einhorn, Jodi Kantor, andd Eric Boodman.

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

Treating the Insects of the Mind

Another woman, who lives in Atlanta, said she was misdiagnosed with scabies, and then humiliated in a hospital corridor by a doctor shouting that she was psychotic. She agreed to see a psychiatrist, but is still convinced that her skin is covered with bites. When she scratches, red, black, or white specks come out; they look like roach turds or eggs, she said. “Anybody with eyes can’t help but see it.”

For another Atlanta woman, a psychiatrist recognized the problem behind her itchiness and her obsessive cleaning, but those appointments haven’t helped. “She wants me to cut down on the cleaning … but in my mind I can’t stop, because if my kids start getting more attacked and I haven’t cleaned …” she said over the phone. “I’m sitting here right now and I feel things crawling all over my feet. I’ve been tested for neuropathy, MS, and cancer. I’ve been tested for everything.”

By now, she hopes the condition is psychological; she just can’t convince herself of it. “It’s ruined my life,” she said. She began to cry.

In STAT, journalist Eric Boodman profiles the etymologists who have the unusual task of helping the public deal with all kinds of insect-related issues, including working with people who suffer from insects scientists cannot find. It’s part of an increasingly-recognized condition known as delusional parasitosis, or DP, and neither science nor medicine understand much about it.

Read the story

We’re Living in the Golden Age of the Corporate Takedown

Elizabeth Holmes. Photo: AP Images

Miki Agrawal, co-founder and “She-EO” of menstrual underwear phenom Thinx, raised eyebrows when she stepped down from her role in the company in early March. Agrawal had long been infamous for her company’s boundary-pushing ads and her well-publicized hesitance to use the word “feminist.” Within days of Agrawal’s announcement, Racked published a gripping article examining corporate dysfunction and alleged sexism at Thinx, and Agrawal struck back with a lengthy post on Medium that detailed her “incredible ride” with the company. “I didn’t put HR practices in place because I was on the road speaking, doing press, brand partnerships, editing all of the creative and shouting from the rooftops about Thinx,” she wrote. Less than a week later, Agrawal was accused of sexual harassment by a former employee.

Such is the power of the corporate hit piece: Fueled by eyewitness accounts, scorned ex-employees, and juicy tidbits about a CEO’s bad behavior, a corporate identity that took years to build can unravel in days. These piquant stories might smack of a slow-motion trainwreck, but they satisfy more than our inner gossips and gawkers. Today, the myth of a CEO is often of their own making—once minted by years of climbing the corporate ladder, now CEOs are made in weeks or months. CEO, we are told, is less a work status than a state of mind.

Read more…

Accidental Therapists: For Insect Detectives, the Trickiest Cases Involve the Bugs that Aren’t Really There

Longreads Pick

The psychiatric condition known as delusional parasitosis is poorly understood, haphazardly treated and on the rise. Public entomologists like Gale Ridge work on the front lines of treatment, where the limits of science and medicine meet.

Source: STAT
Published: Mar 22, 2017
Length: 17 minutes (4,484 words)

Remembering Jerry Krause, Architect Behind the Greatest NBA Team Ever Assembled

Credit: AP Photo/Bill Kostroun

There is dichotomy that naturally comes with any sort of memorialization for Jerry Krause, the general manager of the Chicago Bulls for nearly 20 years and who died earlier this week. Krause didn’t draft Michael Jordan, but it was primarily through his efforts that the Bulls won six NBA titles, dominating the 1990s with players like Scottie Pippen, Steve Kerr, Horace Grant, and Toni Kukoc, among others; Krause was the architect behind the signing and drafting of those players, and without his efforts, who knows if we would even consider Jordan the GOAT. Read more…

The Sense of an Endling

Elena Passarello / Animals Strike Curious Poses / Sarabande Books / March 2017 / 12 minutes (3,100 words)

Illustrations from “The Last Menagerie” by Nicole Antebi.

The last Woolly Mammoths died on an island now called Wrangel, which broke from the mainland twelve thousand years ago. They inhabited it for at least eight millennia, slowly inbreeding themselves into extinction. Even as humans developed their civilizations, the mammoths remained, isolated but relatively safe. While the Akkadian king conquered Mesopotamia and the first settlements began at Troy, the final mammoth was still here on Earth, wandering an Arctic island alone.

The last female aurochs died of old age in the Jaktorów Forest in 1627. When the male perished the year before, its horn was hollowed, capped in gold, and used as a hunting bugle by the king of Poland.

The last pair of great auks had hidden themselves on a huge rock in the northern Atlantic. In 1844, a trio of Icelandic bounty hunters found them in a crag, incubating an egg. Two of the hunters strangled the adults to get to the egg, and the third accidentally crushed its shell under his boot.

Read more…

Moved by Kim

Seth Davis Branitz | Longreads | March, 2017 | 16 minutes (4,085 words)

 

My parents had said it aloud many times, and I had shushed them.

I was guilty of sometimes thinking it.

“Just kill yourself, or get killed quickly, and end all the mayhem.”

My older brother had been barely surviving on a destructive path for so long that sometimes I wished he would just finish it off already.

Really. It just sometimes seemed the easier way for him, and for all of us.

I had no idea how much worse his death would actually make things—how alone his death would leave me, as it hastened the additional deaths that would leave me the only remaining member of my family. Read more…

Literature by the Numbers

Photo credit: Sierra Katow

Jessica Gross | Longreads | March 2017 | 12 minutes (2,982 words)

 

If you’ve ever taken a writing class—or enrolled in high school English—you’ve probably been advised to use fewer adverbs. But does a glut of adverbs really degrade writing? Moreover, do the writers who’ve given this advice even follow it?

This is just the opening gambit of data journalist Ben Blatt’s deep dive into the mathematics of literature. In his new book, Nabokov’s Favorite Word Is Mauve: What the Numbers Reveal About the Classics, Bestsellers, and Our Own Writing, Blatt examines the stylistic fingerprints of writers (which follow them even when they write under pen names in different genres), whether Americans are “louder” than Brits in their writing, the differences between how men and women write, whether books are getting simpler (yup), and many other curiosities.

Blatt has a penchant for numbers. In his first book, I Don’t Care if We Never Get Back (co-written with his friend Eric Brewster), Blatt mathematically engineers the ideal baseball road trip. In this new book, he makes a convincing case that words aren’t any less suited for mathematical analysis than baseball is—and that data can actually help us see and appreciate rule-breaking that really works. We spoke by phone about why he’s drawn to treating art as data, as well as some of his most compelling findings.

* * *

I’m not sure if you chose the title Nabokov’s Favorite Word Is Mauve or if your publisher did—but if it was you, I wondered if you could walk me through that choice. Was that finding the most delightful to you?

So, the title was a collaboration between me and the publisher. But what we were going for was, the book covers a lot. It covers the reading level of New York Times Best Sellers, the adverb use of your classic authors, the difference in how men and women write, book cover design—and with this title, we were going for a bit of intrigue, and a bit of the possibilities of combining numbers and writing, or science and art. And yes, the specific finding about Nabokov was very exciting when I stumbled across it.

In an interview, Ray Bradbury had said his favorite word was “cinnamon.” If you look at the numbers, he actually does use the word “cinnamon” at a high rate. And his reasoning for liking cinnamon was that it reminded him of his grandmother’s pantry. If you look at a bunch of other words that relate to pantries, spices and smells, he also uses those at an extremely high rate. So I repeated that experiment on a hundred other authors, not knowing what to expect or if anything would come up.

For Nabokov, I found that his favorite word was “mauve,” and that struck me as a bit curious. And then I remembered, and found in some further reading, that he had synesthesia. He wrote in his autobiography about how when he would write a certain sound or letters, he would visualize, automatically, that color in his head. And mauve was one of them. I thought this was a nice way of showing that there’s not an opposition between the numbers and the words. This is probably what he would say his favorite word was anyway, but the numbers do back it up.

Read more…