Kidney exchange in People Magazine

In the Nov 30 issue, with Johnny Depp on the cover.

"The chain's home base is the University of Toledo Medical Center, where transplant surgeon Mike Rees performs operations and coordinates the program through his nonprofit, the Alliance for Paired Donation. People enter the chain because they need a kidney and have a friend or family member who is willing to donate, but who isn't a match. Once they enter the chain, Rees's staff inputs their names, blood types and other information into a database of other patient-and-donor pairs; the computer then matches would-be donors and recipients."

The article is referring to a recent reunion of the 20 people involved in Rees' first pioneering non-simultaneous extended altruistic donor (NEAD) chain.

Another organization that has been successfully pursuing NEAD chains among other options is the National Kidney Registry founded by Garet Hil. Here's an article about a recent exchange of theirs: Two couples from Bronx, Jersey exchange kidneys through computer organ donation program.

See here for some more technical material on kidney exchange.

Who gets deceased-donor kidneys? Thinking about changes in the rules.

A lot of thought and politics goes into changing the rules for which patients get which kidneys, how long they wait, and how much that should play a role in the allocation decision, as opposed to other criteria having to do with how well each kidney fits each patient, what is the age difference between deceased donor and recipient, etc.

John Faherty at the Arizona Republic has written an informative account of the ongoing debate: New rules change who gets donated kidneys

"Dr. Kenneth Andreoni, chairman of the United Network for Organ Sharing Kidney Transplantation Committee, has been working to develop a better way to distribute kidneys since 2004.
"The current allocation system went in decades ago," Andreoni said. "It was based on good science, but it was a different time."
The system was built to balance utility with fairness.
For utility, doctors required that donated kidneys and recipients be a close biological match. It was the only way to ensure that the recipient's body wouldn't reject the organ, wasting a precious donation.
For fairness, they established a waiting list. The people on the list the longest were first in line for the next matching kidney.
But in the 1980s and 1990s, things began to change. Better anti-rejection drugs helped a recipient accept a kidney even if they weren't a perfect match. Before long, the allocation system that was supposed to balance utility - the likelihood of a successful transplant - with fairness - time on the waiting list - was out of whack.
All that mattered was the wait time.
Frustration grew among transplant doctors. Without the criteria of a tissue match, the system was no longer using science to make the best choices.
Doctors were sometimes putting healthy young kidneys into recipients with only a few years left to live."
...
"The committee is recommending at least two key elements that are almost certain to be part of the new system.
• The first is dialysis time. The current waiting-list system is less fair than it seems, Andreoni said, because some doctors list patients early, at the first sign of kidney failure, while other doctors wait until after other treatments to list their patients. This puts patients in the second group at a disadvantage.
A dialysis-time list would put all patients on equal footing. The longer you have had to endure the treatment, the sooner you can get a kidney.
• The second element is a complex grading system called the Donor Profile Index. Doctors would measure the quality of a donated kidney to determine how well it will work and how long it will last. Then, they would give that kidney to the patient who would most benefit from it.
That means factoring, to a still-undetermined degree, who would get the most use of a new kidney - who would live the longest.
"Right now, whoever is next in line gets the kidney," Andreoni said. "It does not make the best use of the organ." "


Of course, changes like this, when allocating a scarce resource, involve benefits from some people, but not for everyone.

"With the proposed changes to the allocation system, a patient like Ramirez will be more likely to receive a kidney from a younger person, and probably sooner.
"It's a conundrum. A change would be a really good thing for me," she said. "But if I was older, I might be angry. Maybe they have been waiting for a long time." "

That's what makes some changes politically hard. Sometimes phasing such changes in over time may ease the path.

Update: for those of you who don't click on comments, Michael Giberson said... Why not favor patients with an unmatched donor, and so use deceased donor kidneys to trigger a exchange chain. ?

Mixing the deceased donor kidneys with the kidney exchange pool also involves some complicated political issues, since deceased donor organs are regarded as a shared public resource, but live donor kidneys are of course private property.

But in New England we have permission to do something like what Giberson has in mind, called list exchange: see
Roth, Alvin E., Tayfun Sönmez, M. Utku Ünver, Francis L. Delmonico, and Susan L. Saidman, ''Utilizing List Exchange and Undirected Good Samaritan Donation through 'Chain' Paired Kidney Donations," American Journal of Transplantation, 6, 11, November 2006, 2694-2705.

Here's the first paragraph of the abstract of that paper:
"In a list exchange (LE), the intended recipient in an incompatible pair receives priority on the deceased donor waitlist (DD-waitlist) after the paired incompatible donor donates a kidney to a DD-waitlist candidate. A nondirected donor’s (ND-D) kidney is usually transplanted directly to a DD-waitlist candidate. These two established practices would help even more transplant candidates if they were integrated with kidney paired donation (KPD)."

The paper goes on to report an early NDD chain conducted at the New England Program for Kidney Exchange that passed through the exchange pool, i.e. that included patients with incompatible donors in the middle, with the final link being a donation to someone on the DD-waitlist. We have also done exchanges that may be closer to what Giberson suggests, in which a deceased donor kidney goes to someone in the kidney exchange pool, whose incompatible donor gives to someone else in the pool...whose donor gives to someone on the DD-waitlist.

Gaming the Liver Transplant Market (by Jason Snyder)

When my colleagues and I began talking to transplant surgeons about the design of kidney exchanges, it was initially sometimes hard to convince them that incentives played a big role in organ allocation. (I sometimes heard a variation of "Professor, incentives may be important in economics, but not in medicine; no one chooses to become sick.") But explanations were made easier by a 2003 legal settlement in which some hospitals paid fines for pretending their patients were sicker than they were, to give them increased priority on the waiting list for deceased donor liver transplants: Illinois: Prosecutor's Diagnosis Is Fraud.

By the time of the settlement, the rules for determining priority on the waiting list for livers had already been changed to depend on more objectively verifiable criteria, to reduce the ability of hospitals to game the system on behalf of their patients. A recent paper by Jason Snyder of the UCLA Anderson School of Management looks at the effect of this change:

"Gaming the Liver Transplant Market" Forthcoming at The Journal of Law, Economics, & Organization
"Approximately 6,000 transplants are performed annually and, on average, 2,500 people die while waiting for a liver. There is substantial variation in the number of transplant centers across markets; some markets have only one firm while other markets have multiple participants. Prior to March 1, 2002, a major determinant of whether a patient would obtain a liver was whether they were in the intensive care unit (ICU). Patients in the ICU jumped to the top of the priority list regardless of how sick they actually were. There is considerable anecdotal evidence suggesting that in order to obtain livers for their patients the transplant centers created faux-ICUs where relatively healthy people were put in the ICU to strategically advance their positions on the waiting list. After March 1, 2002, the allocation of livers changed to a system where livers were allocated solely on clinical indicators of sickness. ICU status was no longer a factor in determining whether a patient obtained a liver or not. This policy resulted in, if anything, an increase in the sickness of the average patient at transplant and a dramatic discontinuous decrease in the number of patients who were in the ICU at the time of their transplant. This seemingly contradictory behavior is consistent with centers strategically misrepresenting the health of their patients prior to the policy reforms.

"Using the policy change to examine changes in ICU admission behavior, I find that after the policy changed the use of the ICU decreased more in markets with more firms. I also find that after the policy changed the percentage of relatively healthy people in the ICU decreased more in markets with more firms. Finally I show that these results are non-linear in the number of firms in the market. Moving from one firm to two firms in the marketplace is associated with dramatic changes gaming behavior, but there is little difference between two firms and three or more firms."

Does a decrease in the number of traffic fatalities increase live kidney donation?

Over at Economic Logic, the Economic Logician reviews an article, The Effect of Traffic Safety Laws and Obesity Rates on Living Organ Donations by Jose Fernandez and Lisa Stohr. It finds that a decrease in availability of deceased donor organs (through an increase in helmet and seatbelt laws) elicits some increase in live donor kidney donation.

Here's the abstract, followed by EL's summary.

Abstract: This paper uses variation in traffic safety laws and obesity rates to identify substitution patterns between living and cadaveric kidney donors. Using panel data from 1988-2008, we find that a 1% decrease in the supply of cadaveric donors per 100,000 increases the supply of living donors per 100,000 by .7%. With respect to traffic safety laws, a national adoption of partial helmet laws is estimated to decrease cadaveric donors by 6%, but leads to a 4.2% increase in the number of living donors, or a net effect of 1.8% decrease in the supply of kidney donations. The recent rise in obesity rates is estimated to increase living donor rates by roughly 18%. Lastly, we find evidence that increases in disposable income per capita is associated with an increase in the number of non-biological living donors within a state, but is not found to have an effect on biological donor rates.

And here is EL's summary:

"There are times where you really wonder why authors would even think that some variables could be correlated and how they then come up with a story that can explain this statistical relationship coming from seemingly nowhere. The paper by Jose Fernandez and Lisa Stohr is one of these.To quote their abstract, "this paper uses variation in traffic safety laws and obesity rates to identify substitution patterns between living and cadaveric kidney donors." Despite reading this sentence ten times, I could not make any theoretical sense of it. But reading through the paper, a good story can be made. Tightening traffic safety laws reduces the number of fatalities, and thus the number of cadaveric organ donors. An increase in obesity increases the demand for organs, in particular kidneys. Thus one can instrument for supply and demand using these measures. With this in mond, one can then study how variations in the supply of supply of cadaveric organs (which are of poor value) and demand can motivate living donors to come forward, as they trade off the usefulness of their donation with the personal harm it will inflict upon them. Fernandez and Stohr fiand that donors respond indeed to cadaveric supply and to the increase in demand due to obesity."

Living donor liver transplants

One of the reasons that kidney exchange is proving successful is that the dangers to donors seem to be quite low. In principle, liver exchange is also a possibility: a healthy donor can donate one lobe of his liver, and expect it to grow back. But a recent study of live-donor liver transplants at the pioneering University of Pittsburgh Medical Center reveals that the rate of complications for live liver donors may be quite high: UPMC liver transplant study finds flaws: Study reveals high rate of complications from UPMC procedures that used living donors .

"The study looked specifically at operations in which the larger, right lobe of the donor's liver was removed, and said that "no matter how carefully right lobar [living donor liver transplant] is applied, the historical verdict on the ethics of this procedure may be harsh. There is no precedent of a surgical procedure that exposes healthy persons to such a high risk on behalf of others."
While all 121 liver donors were still alive at the time the study was written, more than 10 percent of them also suffered serious postoperative complications.
The study also concluded that while some people argue that living donor transplants keep recipients from becoming critically ill while waiting for an organ, "in a reversal of fortune," 11 of the 121 recipients became so sick after their initial transplants that they had to get second livers from deceased donors. Only five of the 11 were still alive at the time the study was written."

The article also offers a window on the complicated decisions facing transplant surgeons generally (and not just liver transplant surgeons) about which patients should be offered a transplant. The news story quotes one doctor summarizing the issue as follows:

""I think the study's authors are ...also are bringing out the whole issue that we need to be careful and not just charge ahead and let cowboys do this procedure" "

Thaler on mandated choice

In the NY Times, Dick Thaler considers how the way people are asked whether they would like to be deceased organ donors might influence the donation rate: Opting in vs. Opting Out .

Thaler thinks organ sales are too widely viewed as repugnant to be politically feasible. And despite the headline, he comes out in favor not of opt in or opt out as defaults, but rather mandated choice, a nudge of the kind he and Cass Sunstein celebrate in their best selling book of that name.

"Here is how it works: When you go to renew your driver’s license and update your photograph, you are required to answer this question: “Do you wish to be an organ donor?” The state now has a 60 percent donor signup rate, according to Donate Life Illinois, a coalition of agencies. That is much higher than the national rate of 38 percent reported by Donate Life America
The Illinois system has another advantage. There can be legal conflicts over whether registering intent is enough to qualify you as an organ donor or whether a doctor must still ask your family’s permission. In France, for example, although there is technically a presumed-consent law, in practice doctors still seek relatives’ approval. In Illinois, the First-Person Consent Law, which created this system, makes one’s wishes to be a donor legally binding. Thus, mandated choice may achieve a higher rate of donations than presumed consent, and avoid upsetting those who object to presumed consent for whatever reasons. This is a winning combination.
THE key, however, is to make signup easy, and requiring people to make a choice is just one way to accomplish it. The private sector could help create other simple methods. Here is a challenge to Mr. Jobs: Why not create a Web site — and a free app for the iPhone — that lets people sign up as organ donors in their home states? "

(Note from my earlier post on Steve Jobs' liver transplant that Massachusetts is one of the few states that allows you to sign up to be a donor online, and see also Thaler's remarks at the bottom of this other earlier post.)

One of the things I like about signing up online is that it allows people to think about organ donation at places other than the Department of Motor Vehicles. I wonder if that's the only place we should be asking people about donation; or whether that location invites you to think too much about fatal car crashes (which are far from the only way to become an organ donor, and which you might prefer not to think about).

On the DMV form at the top of the page you can see that here in Massachusetts we have "opt in" for organ donation, but mandated choice for voter registration. (You can enlarge the photo by clicking on it, if you're reading this on a small screen.) So Thaler's good suggestion would be easy to implement, a very gentle nudge in the right direction.

Deceased organ donation: advice from Steve Jobs

Here's a 2-minute CNN video, at the beginning of which Apple CEO Steve Jobs, who recently received a deceased donor liver, advises us all to register to become donors.

If you have a Massachusetts driver's license you can register online to be an organ donor, right now, right here.

Kidney donations, incentives, sales, legislation

An interview including Alex Tabarrok, Sally Satel, and Frank Delmonico, covering the range of viewpoints on the subject.

"Last year Pennsylvania Senator Arlen Specter floated a draft bill that could have cleared the way for states to offer non-cash incentives. ...
But groups including the National Kidney Foundation rejected Specter's proposal, now a spokeswoman for the Senator says he has no plans to introduce the bill."

Here is one draft of Senator Specter's proposed bill (on the site of the American Society of Transplant Surgeons--it was never introduced into the formal legislative process): Organ Donation Clarification Act of 2008 - Proposed Specter Bill

The current issue of the American Journal of Transplantation contains a survey of the ASTS membership, which finds that a majority of the surgeons responding support various income tax credits, insurance, and reimbursement for funeral expenses and lost wages, but oppose cash payments to the donor, donor's family or estate. (Rodrigue et al., "Stimulus for Organ Donation: A Survey of the American Society of Transplant Surgeons Membership," AJT, 2009, 9, 2172-2176.

Misc. organ transplant links

The links below, which I collected over some time but never turned into blog posts, all have something interesting to say about transplantation.

Should We Legalize the Market for Human Organs? An NPR debate among Sally Satel, Amy Friedman, and Lloyd Cohen (arguing for), and James Childress, Frank Delmonico, and David Rothman (arguing against).

Lingering myths discourage organ donation from American Medical News:
"Only 38% of licensed drivers have joined their states' organ donor registries, with many deterred by long-held misconceptions about how the transplant system works, according to poll results released in April."

Organ donations decline with economy from the Miami Herald.
The numbers of organ donors is down, and experts say one reason may be the recession. But "Because of legislative action, Floridians starting in July will be able to register online to be an organ donor at donatelifeflorida.org ."

In the Kidney Trade: Seller Beware
"Need a kidney? You may be able to buy one in Pakistan, which has become one of the world’s largest “kidney bazaars,” according to an article published in the May-June issue of The Hastings Center Report, a bioethics journal.
But who sells their kidneys, and what becomes of these people afterwards? The article, by two doctors and a psychologist from Karachi, paints an ugly picture of the kidney business and challenges the argument made by some that selling organs is a great financial boon to the poor and that they are grateful for the chance to do it. "

A Better Way to Get a Kidney Daniel Rose in a NY Times OpEd proposes we shift to "opt out" for deceased donors.

National Paired Donation Network (Steve Woodle) does an exchange in Pittsburgh: Kidney exchange benefits boy, 5, and woman

Larissa MacFarquhar: Paying for Kidneys
Megan McArdle: Department of Bizarre Arguments

"Exploitation" of the Poor is a Poor Reason to Ban Organ Markets from the Volokh Conspiracy

Milford men take part in four-way kidney swap (when we helped start NEPKE, only pairwise exchanges were initially feasible, but NEPKE became a pioneer in including 3- and 4-way exchanges in its optimization algorithm...)


Britain's only saviour sibling twins: At the age of two, little do they know it but Amy and Anthony Maguire are Britain's only 'saviour sibling' twins, created to be donors for their sick older brother.
Bone marrow donation requires a perfect match.
"The twins were born after IVF treatment was used to select embryos which are a match for their brother Connor so that blood taken from their umbilical cord at birth may one day be used to offer him life-saving treatment."

Organ donation to get halachic approval
A uniquely Israeli obstacle to organ donation wends its way towards resolution:
"Chief Rabbinate tries to encourage religious public to become organ donors by resolving halachic quandaries surrounding process, issuing special donor card "

Public call for organ donations (China Daily), and
China Announces Voluntary Organ Donor System (NY Times)
CD: "China launched a national organ donation system yesterday in a bid to gradually shake off its long-time dependence on executed prisoners as a major source of organs for transplants and as part of efforts to crack down on organ trafficking."...
"Currently about one million people in China need organ transplants each year while only 1 percent receive one, official statistics show.
Only about 130 people on the mainland have signed up to donate their organs since 2003, according to research on the promotion of organ donation after death by professor Chen Zhonghua with the Institute of Organ Transplantation of Tongji Hospital."...
"China issued an organ transplant law in 2007 that bans organ trafficking and only allows donations from living people to blood relatives and spouses, plus someone considered "emotionally connected."
However, organ middlemen have been faking documents in order to make a person who is desperately in need of money be considered "emotionally connected" to the recipients, reports said.
Living transplants increased to 40 percent of total transplants from 15 percent in 2006, Chen Zhonghua said.
"That's one of the daunting tasks facing us as we try to end the organ trade by establishing this system," Huang noted.
Other goals include preventing organ tourism, improving transplant quality, better defining donors' rights and satisfying patients' needs for transplants in an ethical manner."

NYT: "At least one million people in China need organ transplants each year, but only about 10,000 receive them, according to government statistics. Dr. Huang said that most of those organs — as high as 65 percent, by some estimates — are taken from death row inmates after their executions."...
"The practice of harvesting organs from executed Chinese convicts has been widely reported in the past, although it was only confirmed in 2005, by Dr. Huang, at a medical conference in Manila. The government has routinely denied other allegations that prisoners’ organs regularly found their way to the black market, often for sale to wealthy foreigners, and that executions were sometimes scheduled to coincide with the need for a specific organ.
At a news conference in Shanghai held Wednesday to unveil the new organ-donation system, one transplant surgeon was quoted by the newspaper as saying that the taking of organs from convicts was sometimes subject to corruption. "

U.S. black market for kidneys, continued

The AP takes up the story of a man who says he sold his kidney in NY for $20,000, and who posted a video on the web. Here's the publication of the story by MSNBC, which includes the video: Man says he sold kidney in U.S. for $20k. (The video isn't full of information, but the kidney content begins just after minute 5.)

"In 2005, a rebellious and sporadically employed Israeli man flew to New York to give up a kidney to save an American businessman. For that, he says he was paid $20,000, which appeared in a brown envelope on his hospital bed after the operation.
...
"Rosen believes he did a good deed and that organ donors like him should be compensated. Much of his story can be confirmed, and the case gives new resonance to claims that a black market for kidneys has thrived even in the United States."

Here's my earlier post on Black market for kidneys: in the US? , and here's the long list of posts on compensation for donors generally.

HT: Katy Milkman at Wharton

Black market for kidneys: in the US?

The recent arrest in NJ of an alleged international kidney broker may eventually shed some light on the question of how much paid kidney donation may be going on in the U.S. itself. Here's an AP story that raises the question:

Lax hospitals may be fostering kidney-selling
"A look-the-other-way attitude at some U.S. hospitals may be fostering a black-market trade in kidneys, transplant experts say. Some hospitals do not inquire very deeply into the source of the organs they transplant because such operations can be highly lucrative, according to some insiders. A single operation can bring in tens of thousands of dollars for a hospital and its doctors."
...
"Mark McCarren, a New Jersey federal prosecutor involved in the case, said Rosenbaum indicated that the transplants he brokered took place at more than one U.S. hospital and that the hospitals were duped and were not in on the scheme.
According to prosecutors, Rosenbaum was shockingly familiar with the U.S. system and how to beat it. Sellers and recipients would concoct stories about being relatives or friends to fool hospitals into thinking no money was changing hands, McCarren said."

How large a kidney black market exists in the U.S. is an open question. A suggestion that it might not be very large at all was made at a recent transplant conference I attended, by the eminent transplant nephrologist Gabriel Danovitch, who showed some data suggesting that the socioeconomic status distribution of unrelated donors looked a lot like that of related donors. The idea is that, if there were a lot of under the table payments being made, you would expect unrelated donors to be poorer and less educated and perhaps more foreign than related donors...

Here's an earlier post on the subject.

And (not really related) here is an episode of the Daily Show with Jon Stewart that, around minute 7, has a skit lampooning organ sales, immediately following the opening discussion of health care reform.

Corruption and kidneys in New Jersey and Brooklyn

The NY Times reports on a corruption investigation resulting in 44 arrests in New Jersey and Brooklyn: In New Jersey Case, Nervous Jokes and a Cereal Box of Cash

Almost as an aside, the story reports that a broker for transplant kidneys was caught in the net:

"Another man in Brooklyn, Levy-Izhak Rosenbaum, was accused of enticing vulnerable people to give up a kidney for $10,000 and then selling the organ for $160,000. Mr. Dwek pretended to be soliciting a kidney on behalf of someone and Mr. Rosenbaum said that he had been in business of buying organs for years, according to the complaint."

Part of the repugnance to the transaction seems to be the buying and selling prices. (Would we/should we feel differently if the kidneys were bought for $100,000 and sold for $115,000?)

Steve Leider points me to an Indiana Jones connection: Anthropologist's 'Dick Tracy moment' plays role in arrest of suspected kidney trafficker. (The anthropologist in question, Nancy Scheper-Hughes, writes frequently about black markets for kidneys, and apparently indentified Mr Rosenbaum some years ago, although the story doesn't suggest to me an immediate connection to the recent arrest.)

Parag Pathak points me towards Benyamin Cohen's story in Slate, following up on the Jewish connection: The arrests of rabbis who trafficked body parts uncover more complicated issues, that suggests some of the nuances of Jewish religious jurisprudence about organ donation and sales.

Trying to figure out Jewish law directly from the Bible skips a couple of centuries of subsequent interpretation. Here's what I wrote about kidney sales in a footnote of my paper Repugnance as a constraint on markets:

3 While there is no central authority on the application of Jewish law to modern concerns such as transplantation, the most authoritative opinions are contained in various “responsa” or answers to particular questions by rabbis acting as legal “deciders” (poskim), whose authority arises from the respect of their peers. The consensus on the matter of live kidney donation, for example, seems to be that live donation is allowed (since it saves lives), but it is not required (since the donor becomes wounded and takes some risk to his own life), and hence it falls into the category of things for which compensation could be offered and accepted (unlike actions that are either forbidden or required). See, for example, Eisenberg (2006), Grazi and Wolowelsky (2004), Kunin (2005), and Israeli (1997) who cite eminent modern poskim such as Rabbi Shlomo Zalman Auerbach and Rabbi Moshe Feinstein."

"For example, Avraham (2004, p. 271–2) reports the opinion of the eminent Rabbi Shlomo Zalman Auerbach that someone who sells a kidney with the intention of saving a life does a good deed “even if he would not have donated his kidney only to save life.” But he goes on to note, “[I ]n spite of all that has been said above, it seems to me that it is the community that needs soul-searching for allowing a person to reach such a depth of despair that he must sell a kidney, either because of poverty, debts, or the inability to pay for a relative’s medical expenses.”

Although mainstream Jewish authorities support organ donation, some streams of ultra-orthodox Judaism do not: here's a disturbing article brought to my attention by Miran Epstein, from Yediot: Heart recipient's father: We'll never donate organs
It goes on to note
"The father's words angered Prof. Yaacov Lavee, director of the Heart Transplantation Unit at the Sheba Medical Center. "This is outrageous," he said. "I've heard such statements from many of my candidates (for a transplant), who weren't ashamed to admit they wouldn't donate organs.
"Such statements led me to initiate the bill that prioritizes transplants for people who have signed an organ donor card. This is clearly immoral behavior," he added.
The new transplant law, which will go into effect in May, states that any person in need of a transplant and who has had an organ donor card for at least three years will be given priority on the organ transplant waiting list. "

This makes some aspects of Israeli transplant law resemble parts of Singapore's transplant law, which also gives priority for organs to those who are registered as donors. (I wrote about this near the end of an earlier post.)

Update: Sally Satel's take is in the WSJ: About That New Jersey Organ Scandal It’s not surprising when 80,000 Americans are waiting for kidneys, and a background piece from Time magazine: How Does Kidney-Trafficking Work?

Organ tranplants and law in Japan

Japanese transplant law and practice are in flux. Recent news stories convey different parts of the story.

Japan’s Parliament Eases Rules on Organ Transplants, Death Law
July 13 (Bloomberg) -- Japan’s parliament approved legislation to ease restrictions on organ transplants in a move that backers say will save thousands of lives.
The upper house today approved a bill passed in the lower chamber last month that eliminates the need for a written will for organ donations. The new rules also accept a lack of brain function as a legal definition of death.
Doctors performed 11 heart transplants in Japan last year, according to the Japanese Circulation Society, compared with more than 2,000 in the U.S. The 12-year-old limitations lawmakers voted to end today had forced Japanese to travel overseas for transplants “as a last resort to survive,” according to a joint statement from medical groups including the Japan Society for Transplantation.
Each year, about 400 Japanese die because they aren’t able to get a heart transplant, while 2,000 pass away without a new liver, according to statistics presented to lawmakers last year by the society.

Travelling overseas--to the U.S.--for a heart transplant isn't an easy thing to arrange:An organ in U.S. won't be cheap

" Japanese who traveled to the United States to get new hearts were charged as much as about $1.63 million for the operation in 2008, or five times higher than in previous years, medical sources well-versed in organ transplants said Thursday.
...The average fee charged to 42 Japanese who went to the U.S. for heart transplants between 1998 and 2008 rose to about ¥80 million last year, compared with between ¥30 million and ¥70 million in the past, they said.
One child patient was charged as much as ¥160 million for the operation last year, while another was required to put down a deposit of ¥400 million in March, the sources said.
In the U.S., the only country that accepts Japanese for heart transplants, nationals are charged $300,000 on average in hospital and physician fees for the operation, they said, adding that the figure does not include pre- and posttreatment fees."

Japan lifts ban on children donating organs
"Japan lifted a ban Monday on organ donations from children, reversing a restriction that created such a dearth of small organs in the country that young patients were forced to seek transplants abroad.
The law will allow children, defined as those under 15, who are brain dead to donate their organs — a sea change in this country, where organ donating is sensitive because of Buddhist beliefs consider the body sacred and reject its desecration."

Kids under 15 can give organs
"The bill, known as Plan A, which won Lower House approval last month, allows brain-dead children under age 15 to be an organ donor with the family's consent and recognizes brain death as legal death.
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...The current transplant law, enacted 12 years ago, forbids brain-dead people under age 15 from becoming an organ donor. Supporters of Plan A had aimed to revise the law to increase the self-sufficiency of domestic organ availability, but some lawmakers argued brain death is too sensitive an issue and thus should not be universally recognized as actual death. " (HT: Jun Wako)

Related recent post: Children can't get organ donations in Japan, because they can't be deceased donors

Children can't get organ donations in Japan, because they can't be deceased donors

Even organ donation can be regarded as repugnant.
CNN reports on a Boy not allowed to get life-saving transplant in Japan.

""We were told by his doctor at the end of last year that the heart transplant operation was the only way for him to survive," Ando said.
But the law in Japan prohibits anyone under the age of 15 from donating organs -- meaning Hiroki can't get a new heart in his home country.
According to the web site for Japan Transplant Network, a non-governmental group that supports changing Japan's transplant law, "this stipulation has greatly reduced the possibility of transplants to small children; heart transplants to small children have become impossible."
Lawmaker Taro Kono is spearheading efforts to change the law, which was enacted in 1997. Japan's parliament is now debating four proposed amendments-- including one that would scrap the age limit. "

It appears that the thought of a child dying and having his or her organs transplanted is so distressing that it's against the law; it's considered a repugnant transaction. But because small children can't receive adult hearts, which are too big, this repugnance leads to the deaths of other children.

The boy in question still has a chance:

"Hiroki is now at Columbia University Medical Center in New York, awaiting a new heart. His father says he knows that the transplant issue is a difficult one for families.
"The honest wish from the recipient's side is to have a donor show up as soon as possible," he said, pausing. "I still do not know whether I can make a decision to give my child's heart to someone else if I am faced with such a situation. But unless the people face the issue and think about it seriously, I do not think the time will come soon to see more people volunteering to donate organs."

That last quote is worth re-reading, as it captures a lot of the pathos on both sides of the transplantation transaction, in which one tragic death can sometimes save other lives.

If you aren't already registered as a deceased organ donor (i.e. as someone who is willing to have your organs donated if they can be used after your death), please think about registering now. If you live in the United States, you can often find the form on the website of your State Department of Motor Vehicles, since registration as an organ donor is often done when you get your driver's license.

Organs for transplant in Japan

The London Times reports on the shortage of transplantable organs in Japan, where deceased donation is very limited due to the legal requirement of cardiac death. The article is about future possibilities of cloning human organs in sheep. Nearer at hand, the article describes how the organ shortage in Japan is made more serious by the decreasing availability of organ transplants overseas, through growing restrictions on "transplant tourism": Japanese scientist claims breakthrough with organ grown in sheep:

"The reason for Professor Hanazono’s sense of urgency — and for the entire organ harvest project being undertaken at the Jichi Medical University — lies many miles away in Tokyo and with a historical peculiarity of the Japanese legal system.
Japan defines death as the point when the heart permanently stops. The concept of brain death — the phase at which organs can most effectively be harvested from donors — does exist, but organs cannot be extracted at that point.
The long-term effect of the legal definition has been striking: organ donation in Japan is virtually nonexistent, forcing many people to travel abroad in search of transplants. In the United States, the rate of organ donors per million people is about 27; in Japan it is under 0.8.
The effect, say paediatricians, has been especially severe for children. The same law that discounts brain death as suitable circumstances for organ donation broadly prevents children under 15 from allowing their organs to be harvested.
To make matters worse, international restrictions on transplant tourism are becoming ever tougher, making Japan’s position even more untenable. To avert disaster, say doctors, Japan either needs the science of synthetic organ generation to advance faster than seems possible, or it needs a complete rethink on the Japanese definition of death. "

Tax credits for organ donors, and medals

The issue of what compensation or reimbursement if any to allow for organ donation continues to be raised, very slowly, cautiously, and modestly in American legislation. The latest attempt, in the current (111th) Congress: Living Organ Donor Tax Credit Act of 2009 (Introduced in House), proposes

"In General- In the case of an individual who donates a qualified life-saving organ of such individual for transplantation into another individual during the taxable year, there shall be allowed as a credit against the tax imposed by this chapter for the taxable year the sum of--
`(1) unreimbursed costs paid by the taxpayer in connection with such transplantation, and
`(2) any lost wages of the individual in connection with such transplantation.
`(b) Limitation- The credit allowed under subsection (a) with respect to any individual for any taxable year shall not exceed $5,000."


If this sounds excessively cautious, note that the previous (110th) Congress passed, and on October 14, 2008, President George W. Bush signed into law, the Stephanie Tubbs-Jones Congressional Gift of Life Medal Act (HR 7198) (Public Law No: 110-413). (It was passed without opposition in both houses of Congress). The Congressional Research Service summary of the law reads (emphasis added)

"10/14/2008--Public Law.
(This measure has not been amended since it was introduced. The summary of that version is repeated here.)
Stephanie Tubbs Jones Gift of Life Medal Act of 2008 - Makes any organ donor, or the family of any organ donor, eligible for a Stephanie Tubbs Jones Gift of Life Medal.
Requires the Secretary of Health and Human Services to direct the Organ Procurement and Transplantation Network to establish an application procedure, determine eligibility, and arrange for the presentation of medals.
Allows only one medal per family. Requires that such medal be presented to the donor or, in the case of a deceased donor, the family member who signed the consent form authorizing the organ donation.
Authorizes the Network to collect funds to offset expenditures relating to the issuance of medals.
Prohibits federal funds from being used to carry out this Act. "

Why people don't sign organ donor cards

In a report titled The Reluctant Organ Donor, the NY Times wellness blog reports that
"Only 38 percent of licensed drivers are registered to be organ donors, despite the fact that many states offer a simple registration process that typically just requires a signature when obtaining or renewing a driver’s license. An online survey of 5,100 people conducted by the advocacy group Donate Life America found that many people still harbor fears about what organ donation really means.
23 percent of people fear they are not healthy enough or are too old to donate their organs.
50 percent of respondents are concerned that doctors will not try as hard to save them if they are known to be an organ donor.
44 percent believe there is a black market in which people can buy or sell organs or tissue.
57 percent question whether or not a person can recover from brain death."

"Donate Life America is launching a page on Facebook at www.facebook.com/donatelife to make it easier for users to register as donors. Just click on the link and then click on the “Register” tab."

Advances in kidney exchange, in the New England Journal of Medicine

One of the satisfying things about the ongoing collaboration between economists and kidney surgeons is that sometimes the results are very concrete. Today's New England Journal of Medicine reports on such a case in the article: Rees, Michael A., Jonathan E. Kopke, Ronald P. Pelletier, Dorry L. Segev, Matthew E. Rutter, Alfredo J. Fabrega, Jeffrey Rogers, Oleh G. Pankewycz, Janet Hiller, Alvin E. Roth, Tuomas Sandholm, Utku Ünver, and Robert A. Montgomery, “A Non-Simultaneous Extended Altruistic Donor Chain,” New England Journal of Medicine, 360;11, March 12, 2009. The paper reports a chain of kidney surgeries that resulted in ten transplants. It began with an altruistic donor, and was able to accomplish so many transplants because they didn't all have to be done simultaneously. There's a simple economic idea at work here. Mostly in kidney exchange, all the surgeries are done simultaneously. The reason is that if two patient-donor pairs are exchanging kidneys, and if one pair were to donate a kidney to the other first, and the other were subsequently unable or unwilling to reciprocate, the pair that donated the kidney would be severely harmed; not only wouldn't they get the kidney they had been counting on, but they would have donated their donor's kidney and thus be unable to participate in a future exchange. But if there is an altruistic donor who doesn't have a specific patient in mind, and if he or she gives to a patient-donor pair, and they can't subsequently continue the chain, that is a loss, but no one is irreparably harmed. So, when chains begin with an undirected donor, they don't have to be simultaneous, since the costs of a breach are less. Mike Rees and the Alliance for Paired Donation are the heroes of this story: here is the APD's press release. Here's a story from the Boston Globe, that emphasizes the Boston/economist connection of Roth, Sonmez and Unver: Kidney-transplant chain broadens donations. Here's an article from the Pittsburgh Post Gazette that takes note of the collaboration with Carnegie Mellon computer scientists, represented in the NEJM paper by Tuomas Sandholm: Altruistic kidney donations.

Market for transplantable organs

The Times of London reports on Outrage over organs ‘sold to foreigners’

Much of the discussion of sales of transplantable organs focuses on whether the organ donors may receive compensation. Most countries forbid such sales as repugnant. The issue here is quite different. Britain has both private medicine and a National Health Service, and in transplants performed privately, the transplantable organ is essentially sold in a package with the surgery and hospitalization. That is, even without any payments to donors, hospitals and surgeons sell organs, and when the transplant recipients are not British nationals, questions are being raised, the paper reports:

"THE organs of 50 British National Health Service donors have been given to foreign patients who have paid about £75,000 each for private transplant operations in the past two years, freedom of information documents show.
The liver transplants took place at NHS hospitals, despite severe shortages that mean many British patients die while waiting for an organ that could save their lives.
The documents disclose that 40 patients from Greece and Cyprus received liver transplants in the UK paid for by their governments. Donated livers were also given to people from non-European Union countries including Libya, the United Arab Emirates, China and Israel.
The surgeons who carry out the transplants receive a share of the operation fee — believed to be about £20,000 — as all the work is done privately in NHS hospitals. "


See my recent posts on the ongoing discussion in the U.S. on compensation for donors here and here. In the U.S. too, of course, although no payments to donors or their survivors are permitted, patients receive organs as part of a package that they or their insurers are charged for.

Lifesharers: organ donation as a club good rather than a public good

My earlier post today drew a comment from the executive director of an organization, LifeSharers, with an interesting approach to promoting deceased organ donation. In economist-speak, they want to increase organ donation by changing it from a public good to a club good.

Deceased organ donation is a public good in the sense that everyone is better off in expectation if everyone else is willing to donate their organs when they die, but no one receives any direct benefit from donating his organs after death (and there must be perceived costs to donation, since not everyone is a donor).

Economists often worry about how to provide public goods (which is one reason for the invention of taxes: the fellow who mows the lawn in a public park is likely a city employee, but there's no problem in getting people to maintain their own, private lawns...)

In between public and private goods are "club goods," like a park or country club that is funded by members, and is only open to members and their guests. The idea of LifeSharers is that organ donation can be a club good: members indicate that they are willing to donate their organs, giving first preference to other members.

The LifeSharers site has references to some of the many articles that discuss this or similar ideas favorably in the context of organ donation. (I can't put my finger offhand on an unfavorable reference, but I recall seeing some arguments in the medical ethics literature that question whether you should always be happy giving preference to a club member in favor of a non club member, when there might also be many other features that distinguish them...)

As a practical matter, there are obviously obstacles to making a voluntary club good out of a public good that only benefits a member with very low probability. The LifeSharers FAQ includes the following:
Q. How many LifeSharers members have died and donated organs?
A. We have not yet had a member die in circumstances that would have permitted recovery of his or her organs.

Whatever your views on the market design issues, the holidays are a good time (when families are gathered) to let yours know that you would like to be an organ donor, so that they will be able to act on your wishes if it comes to that.