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. 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! Arijit ended up debating directly with the CEO of Aetna, Mark T. Bertolini. The tl;dr: Aetna, and Mr. Bertolini, agreed in the end to cover the full extent of bills that accrued since Arijit was dropped from insurance (about $118,000).
"The system is broken," said Bertolini. "I really am trying to fix it."
Arijit 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 Arijit 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. It looks like Arijit is covered, for now, but the system is still broken. The debate over health care costs has become a political football—but for people like me and Arijit and everyone else in America who isn't in the 1%, health care costs are literally a matter of life and death. No one should suffer or die because they can't afford medical treatment. It really is that simple.
Arijit's friend Jen Wang created a Storify of the twitter exchange between Arijit, Aetna's PR reps, and Aetna's CEO. You can read this below.
Samaritan Magazine has a fun article here about Henna Heals, a charity based in Toronto, Canada that offers a free service to cancer patients undergoing chemotherapy: beautiful henna designs applied to their chemo-bald heads. The organization was created by photographer Frances Darwin, who also captures the resulting designs in photos. Snip:
The swirling, intricate drawings, which are safe, temporary and applied by skilled artists, command the eye to the head of the henna wearer, inspiring awe rather than pity while offering an alternative to wigs or hats. Perhaps more importantly, these henna "crowns" offer women suffering hair loss -- and the accompanying lost sense of femininity that brings -- a chance to feel uniquely lovely while inviting gentle dialog about a tricky subject.
When I began chemo as treatment for breast cancer, a number of friends suggested henna designs to me, too. I haven't done it yet, but I'm still chemo-bald... so it's not too late! Might be worth a trip up to Toronto to visit these guys. A beautiful project, and really pretty designs.
(Photo: Frances Darwin; model: Tara Schubert; henna: Darcy Vasudev. Link via Chris Woodfield)
Japan's burgeoning anti-nuclear movement will be marking the three month anniversary of the March 11 quake and tsunami with a nationwide day of protests, amidst reports that Japan's nuclear reactors may all be shut down by next April. Organisers are touting the day as a '100-man-nin akushon' (1 million-strong action), and there are nearly a dozen marches happening in Tokyo alone - although whether that's evidence of widespread support, or of a movement that's still hopelessly fragmented, is debatable. The largest demos will centre on Shinjuku, Shibuya and the well-trodden route from Shiba Park to Tokyo Station.
Hashtag to follow related activity on Twitter: #611nonukes. Looks like the primary organizing site is nonukes.jp (partial English translation here). They are calling for supporters around the world to organize demonstrations in solidarity:
The day marks three months after the Fukushima nuclear disaster triggered by the earthquake and tsunami. The plants are still spewing radioactive materials. No one wants such dirty electricity harmful to human and nature. Join us on June 11th with million-people action throughout the world and let our voice heard. (...) Our solidarity, if you are in Japan, in Asia, in Europe, in Americas, or anywhere in this world, will soon end this dark age of nuclear power generation.
The bodies of Amazon rainforest activist Joao Claudio Ribeiro da Silva and his wife Maria do Espirito Santo are carried to burial by friends and relatives, in the municipal cemetery of Maraba, in Brazil, on May 26, 2011. The identity of those responsible for the shooting in northern Brazil on Tuesday has not yet been determined, but da Silva predicted his own death six months ago, and was the recipient of frequent death threats by illegal loggers and cattle ranchers.
"I will protect the forest at all costs. That is why I could get a bullet in my head at any moment -- because I denounce the loggers and charcoal producers," he said.
Watch his speech at TEDxAmazonia, below, in which he says he believes killing trees in the rainforest is murder (click the "cc" button in the player for English subtitles).
The murders of da Silva and his wife took place as Brazil's Congress debates a divisive bill that threatens to further expand deforestation. Da Silva and Espirito Santo were active in the same organization of forest workers that was founded by legendary conservationist Chico Mendes. Al Jazeera has a video report here, and a first-person account from the funeral for the slain activist here.
Photos above and below: Reuters. Read the rest
Read the rest
Earlier this week here on Boing Boing, I posted a video by former BB guestblogger Bassam Tariq and Omar Mullick—an incredible little vignette about a father of 6 in a poor community in Pakistan who publishes a Hindu newspaper for the minority Hindu community there, with a message of intercultural peace and tolerance. What amazed me, and BB readers, about the story most? The guy is a shoe-shiner who taught himself how to use computers and do desktop publishing by himself, and he is using a massive, older desktop computer and literally carrying this huge PC on his back to the city, where the newspaper is printed.
Some readers wanted to help out, either with cash donations or by sending a laptop or flash drives, something to make the process easier for him. I asked Bassam, and he writes, "Sabeen Mahmud heads up Peace Niche and she is the one that people can send donations to. People can send her an email at firstname.lastname@example.org."
Panera Bread has been experimenting with "pay what you can" restaurants for about a year, at three of its 1500 US locations. So far, the model seems to be working.
Most patrons, it finds, drop the entire retail cost, or more, into the voluntary donation box, in essence subsidizing a meal for somewhat who can't pay the full amount. Panera says about 60 percent leave the suggested amount; 20 percent leave more; and 20 percent leave less. The largest single payment so far? One person paid $500 for a meal.(CSM via BB Submitterator, thanks Ari B)
Few people seem to be taking unfair advantage of the system. Most know that wouldn't be fair. Not paying when you could "is like parking in a handicapped spot," Mr. Shaich says. "The lesson here is most people are fundamentally good."
A growing number of ex-Peace Corps volunteers are speaking out via blogs and in news interviews about having survived rape and other forms of sexual assault while assigned overseas. They say the agency ignored their concerns for safety or requests for relocation, and tried to blame rape victims for their attacks. Their stories, and support from families and advocates, are drawing attention from lawmakers and promises of reform from the agency.
One of the women whose story is receiving renewed attention is Kate Puzey (shown in the photo at left). The Peace Corps volunteer was murdered in Benin, apparently by a contractor for the agency she was attempting to anonymously report for the rape of girls at the village school. As I blogged in 2009, I was in Benin, pretty close to that village, the same day she was killed. I remember our local friends from that region expressing horror and sadness at her murder. But we didn't know the backstory yet. More on her case follows.
The Peace Corps 2010 budget: $400 million, government funding, your tax dollars at work. The current director today apologized for the agency's poor response to victims, and specifically the Puzey case.
First: In today's New York Times, an article about the volunteers who are speaking out on sexual assault:
In going public, they are exposing an ugly sliver of life in the Peace Corps: the dangers that volunteers face in far-flung corners of the world and the inconsistent -- and, some say, callous -- treatment they receive when they become crime victims.From 2000 to 2009, an average of 22 Peace Corps women each year reported being the victims of rape or attempted rape, according to the agency's own records. During that period a total of over 1,000 volunteers reported sexual assaults, including 221 rapes or attempted rapes.
Remember that viral video that made the rounds last week, of a woman being kicked, beaten and spat upon, on the floor of a McDonald's in Baltimore—then going into an epileptic seizure, as the attack continued for what seems like an eternity? Chrissy Lee Polis, 22, was the victim. She is epileptic. She is also transgender, and that was apparently the motivation for the attack. She spoke to the Baltimore Sun today.
"They said, 'That's a dude, that's a dude and she's in the female bathroom. They spit in my face."Victim of McDonald's beating speaks out (baltimoresun.com)
A worker at the restaurant taped Monday's attack and created a graphic video that went viral last week. After the video garnered hundreds of thousands of views on websites, McDonald's issued a statement condemning the incident, and on Saturday the worker who taped the incident was fired. The video shows two females -- one of them a 14-year-old girl -- repeatedly kicking and punching Polis in the head as an employee and a patron try to intervene. Others can be heard laughing, and men are seen standing idly by. Toward the end of the video, one of the suspects lands a punishing blow to the victim's head, and Polis appears to have a seizure. A man's voice tells the women to run because police are coming.
"I knew they were taping me; I told the guy to stop," said Polis, a resident of Baltimore. "They didn't help me. They didn't do nothing for me."
Related: there have been demonstrations in support of Polis, and in support of a transgender non-discrimination bill that was killed by the Maryland Senate just a week prior to the attack. (toweleroad.com)
Access to life-saving medicines is not a luxury, but a human right.To me, the above statement is one of those things that sound like a no-brainer. Put another way, if I were to ask you whether you thought a person's income should determine whether they live or die from something like HIV/AIDS, then I think you would see that the answer is nothing but obvious. But here I am, in Canada, writing this post, because there is a very real danger that members of my government think that this isn't such an easy decision after all - that maybe wealth and business interests do matter when dealing with such ethical choices, and that there is a hierarchy where certain lives are worth more than others. Let me backtrack a bit, and provide a little context. I'd rather not write a rant, emotional and heart wrenching as this discussion can be - I'd prefer to rely on reason, and not on rhetoric. I want everybody to understand why this is an important issue, one that deserves coverage, and one that deserves our involvement. More importantly, I want everybody to understand why the right thing to do is obvious. To start, let me mention the letters and numbers that make up the label, "Bill C-393." Keep them in your head - at least for a moment. If you're the sort that prefers hearing at least a quick definition, then this one might work:
~Canadian HIV/AIDS Legal Network
Bill C-393 aims to reform CAMR and make it easier for Canada to export affordable, life-saving, generic medicines to developing countries.If you're thinking that this is a Canadian thing, then think again. Other rich countries are watching how Canada will behave. There's a few in Europe, and apparently even China is curious. In the U.S., the topic appears to be quenched, but the behaviour of the Canadian government could catalyze dialogue. And if you're not from a rich country? Well, you might actually have lives that will be affected by it, millions of lives even.
~Canadian HIV/AIDS Legal Network
Read the rest
Hey, I know I say "this is a big deal" a lot, but this really IS a big deal. I've decided what I want to do for the next 20 years, which is to help connect and protect organizations that are doing good through a program I'm calling craigconnects.
I need your help. Together, we can make a difference.
Today the new craigconnects website launched:
* Craigconnects is about calling attention to and connecting good, effective nonprofits and other organizations that get the job done.
* Craigconnects is also about protecting organizations, and the public, from fake organizations that have a good story, but actually end up hurting the people they profess to serve.
I'll be blogging live notes from the Summit on Science, Entertainment and Education (web, twitter, hashtag) taking place today. Hosted by The Science & Entertainment Exchange of the National Academy of Sciences, the event explores how film, television programming, video games, and other entertainment media can enhance science education in America.
Speakers today include Chuck Vest, president of the National Academy of Engineering; Karen Cator, director, Office of Educational Technology, U.S. Dept. of Education; Tony DeRose, senior scientist at Pixar; games designer Will Wright, film director Jerry Zucker (Airplane, Ghost), science reporter Miles O'Brien (PBS NewsHour, Frontline); Neil deGrasse Tyson, scientist and host of NOVA ScienceNOW, and others.
Dozens of teachers, students, and curriculum developers will join in these discussions to explore how movies, television programs, and video and computer games could be used in the classroom. The summit will include breakout sessions and a group exercise to encourage interaction and brainstorming among participants.
Judy Muller ( Emmy Award-winning news correspondent, ABC News), is emceeing. The Gordon and Betty Moore Foundation, which is sponsoring the conference, is offering a $225,000 grant to fund pilot projects that emerge from ideas discussed here today.
Here's some background reading.
As I publish this blog post, we're just a few hours away from the planned start time of mass protests in Egypt, possibly the largest yet in a week of historically large gatherings calling for Hosni Mubarak to step down from some 30 years in power. Alexis Madrigal at The Atlantic tells Boing Boing,
A Twitter follower stepped up to translate excerpts from the Egyptian protest plan that's been floating around (the one that said don't use Twitter or Facebook). We're only publishing excerpts -- i.e. this is more general information and demands, not tactical stuff -- but they are amazing.Translations and scans are here at The Atlantic.
Many important medicines and public health technologies are developed in academic laboratories. Their accessibility in poor nations is profoundly affected by the research, patenting and licensing decisions made by universities. We are a group of university students who believe that our universities have an opportunity and a responsibility to improve global access to public health goodsThis is important for a number of reasons. One example is that it recognizes that almost all therapeutics have their humble beginnings at some lab bench at some university. This isn't necessarily the finished product, but it is often the "eureka" moment that can start the path towards a medicine with real life benefits. Because of this, that academic lab and its researchers, have this opportunity to lay down some ground rules when the discovery is ultimately marketed out to some company. For instance, they can dictate that licensing is different (amenable to generics) when circumstances compel the drug to be sold in markets that simply can't afford the usual prices set by pharmaceutical companies (think HIV medicine in developed versus developing countries). Unfortunately, this amazing opportunity is usually a missed opportunity: which is why UAEM members stay up nights thinking about ways, to advocate, educate, and guide universities to do the right thing. Anyway, if you're connected to the university system, it's a must to check it out. There might already be a UAEM chapter at your school (there is at mine). If not, there's also help available to set one up. Universities Allied for Essential Medicines
So last night, while attempting to explain the plot of Smokey and the Bandit to my husband, it occurred to me that I didn't really understand the back story that spawned this, one of my favorite childhood films. Why did Bandit and Snowman (and Fred) have a long way to go and a short time to get there? There was beer in most parts of Georgia by the 1970s. And even if you were trying to get booze to a dry county, why start in Texas and only give yourself 28 hours?
Thanks to Wikipedia and the very helpful Stephan Zielinski, I discovered the awful truth—Smokey and the Bandit is centered around America's brief love affair with Coors Banquet Beer.
All that work, for Coors? It's true. Wikipedia explained that the beer wasn't available East of Oklahoma at the time. But I didn't get the full extent of what was really going on until I read a 1974 Time magazine article sent to me by Zielinski. If, like me, you didn't begin drinking until the late 1990s, this is going to come as a shock, but, once upon a time, Coors was apparently the best American breweries had to offer.
Read the rest
In an unspecified European city, a group of young people works, studies, travels, publishes on forums and blogs, exchanges on social networks and meets at concerts... A "difficult" situation in the life of a young photo-journalist and his friends' mobilization to help him out of this situation illustrate the breaches of personal data protection facilitated by the use of new technologies. The comic book underlines the consequences but also possible remedies. A glossary and links to useful websites come with the comic book. The comic book "Under surveillance" is available in Catalan, Czech, English and French. Online versions are made available on the project partners' websites. 20,000 hard copies are available in each language and are disseminated for free.
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The youth photo training group Project Einstein got its start with group of young people living in a refugee camp in Bangladesh. One of the participants came up with the name because "Einstein was a refugee but could still do great things."
Here's a collection of images taken by Q´eqchi´ Maya kids and teens in a rural part of Guatemala known as Zona Reyne, where the project is currently working in partnership with this state development group.
(thanks, Renata Avila!)
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- Guatemala: First, volcanic eruption; then, devastating tropical ...
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- NPR Xeni Tech: Guatemala Project Builds Grassroots Tech
The photograph above went viral a few weeks ago, when massive storms and volcanic eruptions caused displacement, injury, and death throughout Guatemala. The sinkhole snapshot is long gone from the top of trending Google link lists, but people are still suffering throughout the country—the worst off, as usual, are marginalized indigenous communities who make up the poorest sector of the population.
As dramatic as this photo was, the sinkhole is the least of Guatemala's worries. How you can help... Read the rest
Read the rest