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).
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)
The diagnosis An inspirational needlepoint for those with cancer On Cost and Cancer in America When life hands you cancer, make cancer-ade: via lemonade stand ... My Dinner with Marijuana: chemo, cannabis, and haute cuisine ... Read the rest
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:
Read the rest
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
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 email@example.com." Read the rest
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.
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."
(CSM via BB Submitterator, thanks Ari B) Read the rest
Photo by @acampadasol (web), who has been photographing the protests in in Madrid's Puerta del Sol square, where some ten thousand demonstrators have gathered to demand jobs, economic equality, and "real democracy." The demonstrations throughout Spain, ahead of the country's upcoming elections, have been compared to various popular uprisings in the Middle East. Global Voices, CBS, AP, Periodismo Humano. Spain's El Pais newspaper, as one might expect, has extensive coverage (photos, video). US-based and English-language outlets, not so much yet.
[iPhone snapshot above: Xeni Jardin; illustration inset, Shepard Fairey.]
His Holiness the 14th Dalai Lama, Tenzin Gyatso, was in Long Beach, California this morning to accept the inaugural edition of a "Shine a Light on Human Rights" award from Amnesty International. My notes from the event follow.
He accepted the award with characteristic humility and good humor, saying, "I am just a single monk; no more, no less," later adding for the Amnesty volunteers and human rights advocates assembled, "Your work is good. Please continue."
Addressing the crowd before the spiritual leader spoke, Amnesty International's U.S. executive director Larry Cox said the award honored the fact that he has "tirelessly and peacefully defended the rights of people everywhere" for over 50 years. This month will also mark the 50th anniversary of the human rights organization's own founding.
The Dalai Lama took questions from Amnesty volunteers for more than an hour, and spoke of the imperative to protect those who are engaged in human rights work, as well as the need for freedom of information and expression in Tibet, China, and around the world.
Speaking through a translator, he described a Tibetan concept of generosity that encompasses not only material goods or comfort to those in need, "but also protection from fear."
"Individuals in some ways have more power than governments; the individuals, the artists, the activists who are compelled to change society—we must protect them."
Despite the white stubble he pointed to on his shaved head, the 76-year-old monk said he was optimistic that he would witness Tibetan "reunion" and peace with China in his lifetime. Read the rest
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."
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."
Victim of McDonald's beating speaks out (baltimoresun.com)
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. Read the rest
Boing Boing reader lokayukta says, "India is going through its 'Egypt moment,' and for our version of Cairo's Tahrir Square, we have the Jantar Mantar in New Delhi, where a 72 year old social acitivist named Anna Hazare is fasting 'til death' to force the government to pass a comprehensive anti-corruption legislation, the Jan Lokpal Bill. The movement has already caught fire in hundreds of cities around India." Read the rest
This particular video does a great job (with a lovely twist at the end) at showing the effectiveness of HIV antiretroviral drugs (ARVs). There's also a followup video you can view that checks in on the woman (Selinah) as well as chatting with the folks behind the video.
Although I realize that the ARVs have been made possible by the work done in the pharmaceutical industry, and that there is a chance that Topsy's programs are facilitated by kind donations from the same industry, it's still a pity that there isn't a more sustainable system for the provision of such drugs to developing countries. Pity that these sorts of medicines are usually priced way too high for individuals like Selinah, which is why so many go untreated and so many die. Pity also that laws like Bill C-393 (which aim to explore different ways to create that sustainable market and lower that price) are being deliberately stalled in government so as to guarantee not being passed.
For the interest of discussion, I've made the above visual aid for members of Canada's Senate, since this is the week that they have a chance to pass a Bill that "aims to make it easier for Canada to export affordable, life-saving, generic medicines to developing countries."
I wrote about this Bill C-393 earlier, stating how the right choice (passing the bill and not killing the bill) is obvious. But then it occurred to me that if the decision was so obvious, then why is there so much "push back" from the pharmaceutical industry (as well as the Harper government).
It turns out the reason appears to be about Bill C-393 representing a trend that "could potentially" lead to a loss of control over the status quo. This being the status quo that provides the pharmaceutical industry with an inordinate amount of lobbying power to set prices; a business model that values huge profits above innovation; and something that they are so focused on protecting that even the smallest of losses must be avoided no matter the consequences.
Which is simply reprehensible - because with this Bill, the consequences are not just about patent control: it's about the livelihood of millions of people, where the decision to "kill" or "not kill" the Bill could literally be a matter of life or death.