Poop Strong: Cancer patient whose costs exceeded insurance cap wins victory, via Twitter

Arijit, 31, is graduate student in Arizona who was diagnosed about a year and a half ago with stage IV colon cancer. He endured multiple surgeries, and grueling rounds of chemotherapy in the first year of his treatment. Then, in February, 2012, the cost of his treatment exceeded the lifetime limit on his graduate student health plan, which is managed by Aetna. His coverage was terminated. His cancer was not.

He launched what we cancer patients sometimes refer to as an internet lemonade stand: a site called Poop Strong (a light-hearted parody of “Livestrong”). At poopstrong.org, he invited well-wishers to make a donation or buy schwag, with all proceeds going to his healthcare.

But, big news today, as his pal Kirk Caron tells Boing Boing,

In the six months between when he was dropped and when he’ll be picked up by another student health plan, he’s been looking at well over $100K in medical bills for his treatments. In addition to updates about his own condition and the state of Poop Strong, Arijit’s been tweeting (naturally) about the state of health insurance, and recently, Aetna got involved. The conversation (as Twitter convos tend to do) sort of spirals out from the main thread between Arijit and Aetna.

That’s an understatement! Arjit ended up debating directly with the CEO of Aetna, Mark Bertolini. The tl;dr: Aetna, and Mr. Bertolini, agreed in the end to cover the full extent of bills that accrued since Arjit was dropped from insurance (about $118,000).

“The system is broken,” said Bertonlini. “I really am trying to fix it.”

Arjit is redirecting all of the donations he received the University of Arizona Cancer Center Patient Assistance Fund and The Wellness Community (Arizona), to directly assist other people with cancer who cannot pay for the life-saving medical treatments they need.

I spoke with Arjit today, and will be publishing a transcript/audio of our conversation soon. He’s a really cool guy, and he has some insights from this experience that I think everyone should hear.

Arjit’s friend Jen Wang created a Storify of the twitter exchange between Arjit, Aetna’s PR reps, and Aetna’s CEO. You can read this below.

[View the story "Arijit & Aetna" on Storify]


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Enthralling Books: Mysteries, by Knut Hamsun

This is one in a series of essays about enthralling books. I asked my friends and colleagues to recommend a book that took over their life. I told them the book didn’t have to be a literary masterpiece. The only thing that mattered was that the book captivated them and carried them into the world within its pages, making them ignore the world around them. I asked: “Did you shirk responsibilities so you could read it? Did you call in sick? Did you read it until dawn? That’s the book I want you to tell us about!” See all the essays in the Enthralling Book series here. — Mark

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Mysteries, by Knut Hamsun

One night in the autumn of 1882, Knut Hamsun’s roommate returned home to find a knife, a cigar, and a note laid out on the table for him.

The note read:

Smoke the cigar and stick the knife into my heart.

Do it quickly, decisively and as a friend, if you value my affection.

Signed Knut H.

P.S. This note will be your defense in court.*

Hamsun lay asleep in his bed, underneath an angel of death that he had painted on the ceiling.

What intrigues me about this… prank? is that it somehow manages to come off as both playful and disturbing at the same time. This quality is present in much of Hamsun’s early work, particularly in his second novel, the aptly titled Mysteries.

Mysteries doesn’t have much in the way of a story. The very first paragraph sums up the plot in a couple dozen words: an eccentric stranger named Johan Nagel shows up in a small Norwegian coastal town, his odd behavior causes a stir, and then he disappears just as suddenly as he came. The writing style is similarly sparse, consisting of brief, straightforward sentences.

But this apparent simplicity conceals a murkier core. I’ve read Mysteries several times in multiple translations, and it always manages to captivate me. There’s so much to chew on: from Nagel’s deliberate, self-defeating behavior, to the haunting, visceral anecdotes that he relates to the perplexed townspeople, to all the enticing details and the questions they raise. What’s the deal with the vial of poison that Nagel carries around? Who is the veiled woman who visits him halfway through the book? And why is it so important that he be wearing his iron ring when the clock strikes twelve each night?

The title of the book being what it is, it probably won’t surprise you to know that most of these questions are left unanswered. But rather than being frustrating, the loose ends are a big part of the book’s charm. They linger with me for days after I reach the last page and tempt me to start over from the beginning, so I can be shocked and delighted by Nagel’s antics all over again.

*Cigar/knife anecdote adapted from Ingar Sletten Kolloen’s Knut Hamsun: Dreamer And Dissenter

Buy Mysteries on Amazon


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Olympics 2012 opening ceremony honors Tim Berners-Lee, but NBC anchors don’t know who he is

“Tim being Englishman Tim Berners-Lee… if you haven’t heard of him, [laugh], we haven’t either.” — Meredith Vieira, derping out with Matt Lauer during the opening ceremonies of the 2012 Olympics.

Meredith, Matt: You guys. You could look it up on the World Wide Web.

Video here, courtesy of Ethan Klapper.

“These are little pixel screens at every seat that allows the creative team here to actually turn the crowd into a giant LED screen,” Lauer later says.

Vieira: “One more thing I don’t understand.”

(via @stevesilberman)

Hidden Steve Jobs tribute in #OlympicCeremony: Tim Berners Lee used his Next box to send the message.

— Steven Levy (@StevenLevy) July 28, 2012

@StevenLevy Screen shot of 1991 NextMail to Mitch telling him about WWW. Also includes NextMail from Sir Tim twitter.com/JPBarlow/statu…

— John Perry Barlow (@JPBarlow) July 28, 2012


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What do you think of the new Apple "genius" ads running during Olympics 2012 TV coverage?

The internets are a-flutter with critics of these new Apple ads. I’m not crazy about them. They feel like they’re for Best Buy or something, not Apple. I do wish they’d just bring back John Hodgman. (via @nytjim)


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Sick of the Olympics already? Olwimpics browser blocker is your new best friend.

Greg Leuch at fffffat unveils the Olwimpics content blocker for Chrome, Firefox, and Safari. Sweet Jesus, thank you. (via @gautamramdurai)


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A message for the media from an Aurora shooting survivor: "Give victims and survivors their space"

“Student, writer, and self-identifying geek” A.J. Focht, writing on a Suicide Girls blog, talks about the experience of surviving the recent mass shooting at “The Dark Knight Rises” premiere at an Aurora, CO movie theater— and, how a friend and fellow survivor was hounded by content-hungry television producers:

With only a small charge left in her phone one of the members of my group thought it best to send out a blanket distress beacon via Twitter so she could conserve her battery to call her parents and a ride home. Caitlin tweeted from her account @dingos8myTARDIS informing her family and friends of the chaos and that she was physically alright. Her tweets were some of the first online, and within the hour BBC, CNN, and others were broadcasting her messages on the news. The hundreds of media outlets that contacted her throughout the night were unexpected, but we could understand they were just trying to do their jobs. Once we had been released, Caitlin, not wanting the mass media attention, released these tweets:


dingos8myTARDIS: To the media: I was tweeting earlier because my phone was on 10%batt & I needed to let people know I was okay. I am (in) no shape for interviews.

dingos8myTARDIS: To rephrase: I have no interest in interviews at this time. I was merely sending an emergency beacon.

Despite her requesting to be left alone, she was perpetually bombarded by yet more media requests via Twitter from outlets including FOX News and The Huffington Post. As if the mass attention on Twitter was not enough, other news networks took it upon themselves to get her phone number and start calling her.

While we all sat anxiously awaiting information on the MIA member of our group, phones and email notifications continued go off till all our phones had died. Before even our families and friends had a chance to check in, the overzealous reporters were all but knocking on our doors. Right after our group finally learned our missing member didn’t make it, Caitlin’s phone began to ring; It was the Today Show on the other end requesting an interview about him. She told them off and asked them not to contact her again. However, her pleas didn’t stop them from calling again the next morning, still trying to get an interview.

Focht is among those who wish that media would “stop showing” images of the suspected killer. There’s a balance for news outlets to strike in cases like this; there’s informing, and there’s exploitation. For the record, we at Boing Boing have refrained from publishing the image, because there’s no real need for us to.

Read the rest: “Back Row Perspective Part 1: An Aurora Theater Survivor’s Message to the Media.”

There’s a second piece, well worth reading, with words for the politicians who seek to capitalize on the massacre.


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Mitt Romney Goes to Paris (a poem)

“It’s an honor to be welcomed by the President of France/Who would have been that World Bank guy if he’d kept on his pants”—Jerry Adler’s poetic interpretation of presidential candidate Mitt Romney’s visit to the capital of France. (via Steven Levy)


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Yelp reviews, read by real actors (video)

[Video Link] Chris Kipiniak, who is a working actor, puts all those many years of training and practice to work in a dramatic interpretation of an online restaurant review for the Stratford Diner. This appears to be the first in a series, to which you can subscribe. (video by Joe Plummer; thanks Joe Sabia!)


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Caturday (photo)

Muaz Mohamed shot this lovely photo of a kitteh wishing you a happy Caturday, with a high-five paw. Shared in the Boing Boing Flickr pool.


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Why one mutation can protect people from HIV

We’ve talked here before about the importance of the protein CCR5 in HIV/AIDS treatment research. CCR5 is a protein on the surface of immune cells. Some people have a genetic mutation, called Delta-32, which alters how that protein works, how often it appears, or changes its structure. People with the mutation have immunity to some strains of HIV, the virus that causes AIDS.

CCR5 is the key to the Berlin Patient—Timothy Ray Brown—who, until recently, was the only person to ever be cured of AIDS. Brown received bone marrow transplants from people who had the Delta-32 mutation. His body has been HIV-free for five years. And, last week, researchers announced that two other people successfully received the same treatment.

But here’s the thing, until today, I didn’t totally understand how the connection between CCR5, Delta-32, and HIV worked. There’s a story (and some great digital illustrations) on NPR’s Shots blog that makes the situation much more clear. HIV, apparently, have little spikes all over its surface. These spikes are how the virus injects itself into cells.

When it bumps into a T cell, a finger-like projection on the cell’s surface, called CCR5, pushes down on the spike. This interaction pops open the HIV and releases the infectious genes into the cell. A gene therapy could protect T cells by inactivating the CCR5 gene.

Great “A-ha!” moment for me. Read the rest of the story and look at the illustrations. It’ll make some thing make a lot more sense.

Read the rest at NPR’s Shots blog

PREVIOUSLY:

If AIDS Has Been Cured, Why is the Victory Party So Small?

AIDS Research Done by 17-Year-Olds


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