Kidney Blogging Cont'd
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.