The House has unanimously passed the now-renamed "Charlie W. Norwood Living Organ Donation Act," clarifying federal law to explicitly permit "paired exchanges" from living organ donors. With the law clarified, we can expect to see more stories like this one:
HOPEDALE - Lisa Dubois wanted to save the life of an ailing Framingham woman but instead saved the lives of three complete strangers. Last week, Dubois, 44, of Hopedale, participated in what is likely the fourth triple kidney transplant exchange in the world.
Though none of the donors, recipients or their families have met, Dubois knows her kidney went to a 21-year-old man whose mother agreed to donate her kidney to a stranger if a stranger (in this case Dubois) could save her son. The mother's kidney was donated to a person who also had a family member enrolled in the kidney exchange program so another kidney was donated to the next matching person on the waiting list. All six surgeries were done last Tuesday, with two transplants being done at Massachusetts General Hospital and the third at Beth Israel Deaconness Medical Center....
After reading about Framingham's Krystine Orr in the Daily News in October, Dubois called Orr's husband and then Mass. General to go through weeks of physical and psychological screening to be a donor. Just when it seemed like the transplant was a go, Orr ran into trouble when she became sick, resulting in Dubois no longer being a match.
But she agreed to be put on the donor list in case anyone else needed her kidney and was a good match.
"I could relate to Krystine" because she read about her and saw her picture "but then I said it doesn't matter who it is, as long as I could help somebody," she said.
Orr eventually received a kidney from a cousin's husband from New York after more than a year of searching.
A few months later, Dubois received a call from Mass. General while on vacation in North Carolina explaining she was a match with a patient and if she agreed to donate it would set off a very rare triple exchange.
"It's unique, it's wonderful that three people were able to get kidneys that were waiting for such a long time and didn't have any other options," said Dr. Nina Tolkoff-Rubin, medical director for dialysis and renal transplant at Mass. General.
That report was from Rob Haneisen of the Milford Daily News, who previously chronicled the story of Lisa Cunningham, the woman whose transplant center refused to consider a donor who'd read about her in the paper.
The Norwood bill, co-sponsored by Jay Inslee (D-WA), will also save taxpayers money. Some members of Congress apparently expressed a concern about the fiscal impact of more transplants, so the CBO did an estimate. The result: a net saving of about $470 million over 10 years, as transplant patients go off dialysis.
In other good kidney news, as sports fans already know, Everson Walls did go through with his planned donation to Ron Springs and, as you can imagine, the two former Cowboys got major coverage in the Dallas press, including this huge front-page story in the DMN. (I was in L.A. at the time, which explains the delay.) Proving just how tough even retired NFL players are, the two friends held a televised press conference less than two days after the surgery (video here). The DMN's Barry Horn reports
Their mission accomplished, Everson Walls and Ron Springs pledged Friday to work for organ transplant awareness.
Less than 48 hours after Walls donated a kidney to his former Cowboys teammate, the two men appeared at a Medical City Dallas Hospital news conference to shed light on their experience and stress the need for more donations.
"We are trying to get transplantation and organ donation on the front pages," Walls said.
I hope they succeed. As both these stories illustrate, "altruistic" organ donations are motivated not by self-sacrifice but by sympathy and identification, whether for an old friend or a stranger with a compelling story. Neither berating people to do their duty nor treating organ donors as rare heroes promises to expand the number of available organs much. Respecting donors' values and preferences would do more. Unfortunately, too many bioethicists regard organ donors as tools to serve their own egalitarian ideologies--witness the Lisa Cunningham story--and by forbidding donors, living or deceased, to exercise any control over who benefits from their gift, they discourage donation. In her book Black Markets
, Michele Goodwin discusses the dampening effect these policies have on deceased donations from African Americans. More black families would consent to organ donation, she argues, if they could give black patients first choice as beneficiaries. (African Americans, who constitute about 12 percent of the U.S. population, make up one third of those on the kidney waiting list.) But such tribal bias is, of course, unthinkable, even though it would increase the number of organs available.
As people become more and more aware of the financial value of their body parts, something Michele's book also discusses, resistance to no-strings donation will only increase. Reader William Wallis writes in response to my post below:
My brother died waiting for a kidney. I have revoked my organ card because, when I objected to a lifer receiving a heart-lung transplant I was told that I could not limit my organs to non-felons. I have tried to get the Red Cross to allow a tax credit for blood donation equal to the retail price of the blood, but I was tartly told that they never paid for blood. I can donate a car and get tax consideration, but not blood or body parts. Sheesh.
Kerry Howley of Reason takes up this subject in the LAT.
Gruesome but true: LifeCell's "human-derived" skin graft, Alloderm, is made by using real skin from donated corpses. The New Jersey company is making a fortune from dead Americans, but thanks to federal law, the company couldn't pay donors even if it wanted to. The National Organ Transplant Act of 1984 was enacted, in part, to prevent you and me from selling our body parts, which is seen as degrading and dangerous. Most medical ethicists continue to stand by that law, but they're ignoring the obvious: We can't sell ourselves, but others can.
Donors, assured that they're providing the "gift of life," likely assume that the system is as altruistic as they are. Tissue procurement organizations have a story they sell to donors, and it's one of medical miracles, not booming businesses. As the Ohio Department of Health explains on its donor recruitment website: "Through...tissue donation everyday citizens, just like you, have a chance to make a difference. To be a life saver. To be a hero."
Well, that's half the story, and here's the rest: Within the biotech world, miracles and business are one and the same. There is nothing inherently wrong with biotech companies reselling donated tissues. Think of it this way: The Salvation Army--hardly a bastion of greed--sells donated secondhand clothes. Resale is often the best way to get donations to people who need them.
Then again, if you decide to skip the donation bin and sell your outdated suit on your own terms, no politician will stop you. The same should be true for tissue. But federal law has one set of rules for tissue donors and another for businesses.
The current system is politically, ethically, and medically unsustainable. The only question is how many people will die waiting for organs before compensation for donors--beyond the complex barter system of paired donation--is made legal.
Posted by Virginia Postrel on March 07, 2007 • Comments
In response to a challenge from Dan and me on Bloggingheads, Kieran Healy weighs in on my dispute with Amitai Etzioni about organ donation. It's a long, thoughtful post and deserves reading in its entirety. The conclusion is what I would have expected from reading Kieran's book and is, I believe, correct.
At bottom, I think, monetary payments and financial incentives are simply not incompatible with the kind of moral obligations that Etzioni has in mind. We might want to idealize the distinction between morally virtuous gift-exchange and selfishly-motivated market transactions, but this boundary is crossed too often in practice for us to draw a bright line. Moreover, it is crossed in both directions: gift-exchange is often made a vehicle for self-interest; market transactions routiney have strongly moralized or normative aspects. Empirically, I would have two expectations for a viable market for kidneys. First, it would immediately incorporate a great deal of the gift form in order to legitimate itself, with market-matching between donors and recipients working largely at the back-end. Second, it would probably stratify itself in a way that reflected the structure of the U.S. health care system in general, with all that implies about the bottom-end of the market. In that sense Etzioni's concerns are valid. But those inequities apply also to the communitarian alternative. Why should people feel any moral obligation to participate in a system that does not serve them well in other respects? To think otherwise is a kind of gift fetishism--the belief that we can guarantee the fairness of an exchange simply by insisting that it take the form of a morally obligatory gift.
Amitai Etzioni may want to ostracize me as a "zealot" and imply that I have no business writing in respectable places like The New York Times Book Review, but both Healy and I have a much deeper knowledge of the empirical realities of organ donation than Mr. Communitarian. I am not the ideologue in this debate.
Another empirical reality is that many people are deeply suspicious that doctors will rush the deaths of prospective (deceased) organ donors. Stories like this only feed that suspicion. Legitimate or not, those fears--and those agency problems--have to be respected. That's one reason I believe incentives for donation, including but not limited to full-blown markets, should focus on living donors. It's also a very good reason for opposing "presumed consent," the policy which would require people to explicitly state that they do not want to be organ donors on death. Without such statements, the organs would be harvested from brain-dead patients, regardless of the family's wishes. (Some European countries have adopted this policy; rumor has it that Kieran Healy has done research on the outcomes, but I haven't seen it.)
Today marks the first anniversary of Sally Satel's kidney transplant, for which I provided a kidney. I'm happy to say that she's doing great. Aside from having to take immunosupressant drugs, she's completely cured.
Posted by Virginia Postrel on March 04, 2007 • Comments
The LAT's Edmund Sanders profiles Awatif Ahmed Isshag, the 24 year old who represents local journalism in Darfur:
EL FASHER, SUDA--For Awatif Ahmed Isshag, covering Darfur is the story of her life.
Nearly a decade ago, at 14, Isshag started publishing a handwritten community newsletter about local events, arts and religion. Once a month she'd paste decorated pages to a large piece of wood and hang it from a tree outside her family's home for passersby to read.
But after western Sudan plunged into bloodshed and suffering in 2003, Isshag's publication took on a decidedly sharper edge, tackling issues such as the plight of refugees, water shortages, government inaction in the face of militia attacks, and sexual violence against women.
Her grass-roots periodical has become the closest thing that El Fasher, capital of North Darfur state, has to a hometown newspaper. More than 100 people a day stop to check out her latest installments, some walking several miles from nearby displacement camps, she said....
"She represents the only indigenous piece of journalism in Darfur," said Simon Haselock, a media consultant with Africa Union in Khartoum. "She's got energy and drive. It's exactly what they need."
Readers say her magazine, called Al Raheel (which roughly translates as "Moving" or "Departing"), is one of the only places they can read locally produced stories about issues touching their lives.
"It's the best because this magazine shows what is really happening in Darfur," said Mohammed Ameen Slik, 30, an airline supervisor who lives nearby.
Isshag complained that despite international attention, the suffering of Darfur remained vastly underreported inside Sudan. There are no television stations in the area, and most newspapers operate under government control or are based hundreds of miles away in Khartoum.
"The local media don't cover the issue of Darfur," she said. "We hear about it when one child dies in Iraq, but we hear nothing when 50 children die" in Darfur.
Read the whole thing.
Posted by Virginia Postrel on March 04, 2007 • Comments
The LAT's Steffie Nelson profiles Vanessa Gonzalez, who creates and coordinates events for the Museum of Contemporary Art:
As MOCA's development events manager, coordinating an average of 35 events a year, Gonzalez is more rock 'n' roll chick than art geek, with her platinum hair, platform shoes, high-gloss lips and vanity plates that say "GR*UPIE." Over the past five years, she's produced events that have made MOCA one of the hottest social tickets in town, like this past fall's "Skin + Bones" fete, which attracted such A-listers as Ashton Kutcher and Demi Moore. With the growing L.A. art scene, the museum's membership has also shot up, which, according to MOCA's director, Jeremy Strick, can be linked in part to "the unique atmosphere Vanessa helps to create."...
A first-generation Mexican American who was raised in Monterey Park, Gonzalez, 31, found her special events calling early, directing her cousins in plays and turning the family abode into a haunted house for Halloween — "with soundtracks that I created the day before, and all-out lighting effects." Costumes too, of course. "Absolutely! I would raid my mother's closet, and of course I had no idea when I was 7 who Karl Lagerfeld was, but I was wearing it!"
After finishing her theater degree at Cal State Fullerton, Gonzalez moved to London with four suitcases--one containing just shoes--to immerse herself in the Brit pop scene. She helped launch Ian Schrager's first international boutique hotel, St. Martin's Lane, returning home after she'd pushed her visa to the limit. Through the newspaper she found a job in MOCA's visitor services department, and two years later she began producing donor and fundraising events.
This is the kind of job that no one ever imagined as a serious career 20 years ago--and that people still don't think of when they ask, "Where will new jobs come from?" The new sources of jobs are much more fragmented than the old, and more and more of them involve creating experiences rather than stuff. These event-planning jobs are increasingly common, as organizations realize that what people will pay for these days is in-person attention. I seem to get at least two internal emails a week advertising events-related jobs at Atlantic Media.
For insights into the underlying dynamics, see Fred Turner's 1996 Reason article on the "charm economy," and Neal Stephenson's brilliant, hard-to-find, and probably illegally posted story, "Jipi's Bad Day," originally published in the 80th-anniversary issue of Forbes in 1997. (I still have the issue, though it's 1,245 miles away at the moment so I can't check the story's title.)
Posted by Virginia Postrel on March 04, 2007 • Comments
In fact, I've been known to say in public that he's "the devil." But Joe Conason has a point, especially about the always-inconsistent Maureen Dowd. (I had to laugh at her I-am-so-erudite column sneering at chick lit, the genre whose values she has done so much to bring to the op-ed page.)
Posted by Virginia Postrel on March 04, 2007 • Comments
Grace Peng, who is probably the greenest person I know in her personal behavior, explains why even she is against the light bulb ban. It's amazing how legislators and regulators are determined to reward and punish particular technologies rather than letting price signals work.
Posted by Virginia Postrel on March 03, 2007 • Comments
In our Bloggingheads conversation, Dan Drezner and I discussed the younger generation's proclivities for self-disclosure, following up on this post. Perhaps, I suggest, putting your life online is just a phase and people will pull back once they realize there are negative consequences, assuming such consequences are, in fact, forthcoming. This ABC report suggests that's exactly what's happening--to the point that one guy has even made a business of hunting down and removing embarrassing material. He has some advice:
Fertik suggests 20-somethings give posting personal information on the Web the same consideration they would a major body modification.
"The best way to think of this is as a tattoo," he said. "Would your 30-year-old self want to live with the decisions of your 20-year-old self? Would your 40-year-old self want to live with those decisions?"
In today's WSJ, however, Jennifer Saranow suggests that the cult of too much information is infiltrating the adult world (free link):
If you hate newsy holiday letters, brace yourself for the live blog.
People are increasingly documenting the most mundane and private aspects of their lives and posting them the instant they happen. From birth -- "I can see his head a little" -- to death -- "so many memories," one blogger posted from a funeral -- no experience is too personal or sacred not to be shared....
Hosts who want to ensure that guests focus on the festivities are responding with countermeasures. Expecting about half a dozen bloggers at their wedding, Joey de Villa, 39, and Wendy Koslow, 32, posted "A Note To Other Bloggers" on their wedding Web site about two weeks before their September 2005 nuptials in Cambridge, Mass. The note asked guests not to bring their laptops to the event and to only blog about the wedding after the fact. "I wanted them to pay attention and enjoy themselves and participate," says Ms. Koslow, who came up with the idea for the embargo. "I wanted them to be in the moment."
Although the guests complied, the first attendee blog post was up by 11:16 that night, shortly after the reception ended. The culprit: Rev. A. K. M. Adam, a 49-year-old Episcopal priest from Evanston, Ill., who preached at the ceremony. From his hotel room, he wrote, "the ketubah is signed, the glass smashed, the champagne toasted, the disco medley played, and the guests exhausted. These guests, anyway." Rev. Adam says, "It was the thing that happened that day, so I wrote about it."
He didn't explain why an Episcopal priest was overseeing a ketubah or what happened to the "the" before Reverend. (Back in my day, the WSJ was more careful about such things. But then you couldn't use "Ms." either. I am so old...)
UPDATE: Speaking of youthful indiscretions, here's the scoop on Hillary Diane Rodham's formerly locked up senior thesis about Saul Alinsky. The Clintons really were stupid to persuade Wellesley to make it off-limits, feeding speculation that it would prove her a youthful communist.
Posted by Virginia Postrel on March 02, 2007 • Comments
Drawing on numbers collected by Max Boot, Michael Barone explains why Angelina Jolie's plea for someone to do something for Darfur misses a practical point. It's easy to pick on an actress. Alas, the same critique applies to sophisticated observers like Nicholas Kristof. It's hard--perhaps impossible--to stop genocide without a lot of troops.
Posted by Virginia Postrel on March 02, 2007 • Comments
After a false start on Monday--bizarre visual effects here, explanation here--Dan Drezner and I recorded a Bloggingheads.tv conversation yesterday, with topics ranging from the Oscars and Oscar fashion to privacy and the confessional practices of Dan's deadbeat students. You can view it here.
Posted by Virginia Postrel on February 28, 2007 • Comments
Reader Jim Mamer writes:
One of the side benefits of all this "spying" showed up in the news in the West Palm Beach, Florida, area last week. Kids in high and middle schools are using their cell phone cameras to photograph and put on the net pictures of students doing drugs on campus. My daughter complained about the druggies when she was at Dwyer HS about eight years ago (students shooting up heroin in the girls bathrooms...and Dwyer has a mostly white, middle and upper middle class student body), but school officials wouldn't do anything. I haven't heard much since then, but the media tend to ignore or suppress bad news about the schools.
Sounds like fodder for an episode in the Law and Order franchise.
Posted by Virginia Postrel on February 26, 2007 • Comments