Who shall be saved?

Dr. Sally Satel has a very thoughtful piece in the August-September 2007 issue of the Hoover Institution's Policy Review.

Dr. Satel attended a forum on proposed revisions to UNOS kidney allocation rules. The proposed new rules are an attempt to maximize "Life Years from Transplant", which would mean older patients would get fewer kidneys. This prompted one attendee to say "That’s playing God and people aren’t going to like it.”

Dr. Satel writes: "That is not playing God; that is playing man — the all-too-human affair of people deliberating strenuously and in good faith to determine what is right." She goes on to describe the dilemma caused by the shortage of transplantable organs: "It is the eternal tradeoff that comes with medical rationing: individual versus societal benefit. Who will be saved?"

If there was no shortage of organs, everyone would be saved. There would be no need to decide who to save. Until then, we should decide to save registered organ donors first. Why? Because that will cause more people to register as organ donors, which will increase the supply of organs and save more lives. It will also mean we will face fewer decisions about who to save.

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Ending the black market for human organs

Jeff Stier of the American Council on Science and Health has an excellent piece in the New York Post on August 6th. He points out that the shortage of human organs for transplant operations has led to a macabre black market, and argues that a regulated system of incentives for donors would save lives and reduce the shortage that promotes the black market.

One of the incentives he mentions is Alex Tabarrok's "no give, no take" rule. LifeSharers is a variation of this idea. Alex Tabarrok is an Associate Professor of Economics at George Mason University, Research Director at The Independent Institute, co-author of the Marginal Revolution blog, and an advisor to LifeSharers.

Mr. Stier also writes: "Unless you're lucky enough to have a relative or some other highly motivated and altruistic donor, there is no legal way to improve your chances in the painfully slow race against death." This was true before LifeSharers came along, but it isn't any more. By joining LifeSharers you get preferred access to the organs of other members, so you improve your chances of getting a transplant should you ever need one.

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Kidney donation chain

The Arizona Republic highlighted America's first kidney donation chain in a July 22 story:

A chain of small miracles started in Phoenix last week.

It began when a Michigan man decided to donate one of his kidneys to a person he had never met.

His decision means a Phoenix woman will be able to watch her grandchildren grow up. But it does not stop there. Now the Phoenix woman's husband will donate one of his kidneys to a perfect stranger. That woman's best friend will then do the same. And so on and so on.

Eventually eight people, and possibly far more, will be saved because of the marriage of good will and medical technology.

This kidney chain - the first of its kind - is possible because of a new type of organ donation called a paired donation.

It happens when someone who needs a kidney has a person who is willing to donate one, but their body chemistry prevents a good match.

In a paired donation, those two people will be connected with two other people in the same situation.

Each healthy person then donates a kidney to someone who needs it.

The only unusual thing is that the donors are helping strangers directly in order to indirectly help the person they love.

Some people have been concerned that paired donations violate the National Organ Transplant Act's prohibition against donation for "valuable consideration" because they involve donation of a kidney in exchange for another kidney. President Bush is expected to soon sign legislation clarifying that these types of organ donations are legal.

The existence of paired donations provides further proof that altruism is not the only reason people donate organs. Some people say altruism should be the only reason people donate. If this attitude was turned into law it would kill people.

If you needed an organ transplant, would you care why your donor donated? Or would you just be glad they did?


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Presumed consent

In England, the Chief Medical Officer has recommended implementing an "opt-out" organ donation system. This is also known as presumed consent. Under this system, everybody is presumed to consent to the donation of their organs when they die. Anyone can fill out a form saying they don't want to donate.

If this system was implemented in the United States, the supply of organs for transplant operations would increase significantly. According to polls, about 90% of Americans support organ donation but only about 50% have bothered to register. If everybody was automatically registered, few people would bother to un-register.

Presumed consent can only be implemented in the United States through legislative action -- Congress would have to pass a law. The chances of this happening in the foreseeable future are somewhere between very slim and none, because there is wide-spread opposition to the idea of presumed consent.

This underlines the importance of the grass-roots approach of LifeSharers. You don't need Congressional action to join LifeSharers and donate your organs to other organ donors. When you donate your organs to other organ donors you create an incentive for non-donors to become donors, you make the transplant system fairer, and you increase your own chances of getting a transplant should you ever need one.

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LifeSharers in TIME Magazine

TIME Magazine has a story about LifeSharers in its current issue.

The story says Dr. David Landry, a nephrologist at Columbia University, "points out there are people who consciously don't register for organ donation for religious and other reasons, and it would be unfair to press them on their beliefs." If we are supposed to respect these people's reasons for not donating to us, shouldn't those people respect our reasons for donating to people who will return the favor? Are we supposed to respect their beliefs while they object to ours?

The story also quotes Elisa Gordon, a bioethics professor at Albany Medical College in New York State. "No other patients seeking medical treatment are required to give back anything beyond money for the costs of treatment," Gordon says. But organ transplants are a unique medical treatment -- it's illegal to pay people for their organs so there are no organ transplants without organ donations. As long as we have to rely on donated organs, it makes sense to give organs first to organ donors.

The story also incorrectly says LifeSharers members pledge to donate their organs "only to other members". This is not true. We pledge to donate first to other members. The last thing we want is for our organs to go to waste, so if no member needs an organ from a LifeSharers member, the organ is offered to non-members.

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How many Americans are registered organ donors?

Reuters reports that according to a recent poll by Harris Interactive, half of the adults in the United States say they have registered as an organ donor.

Humphrey Taylor, chairman of Harris Interactive, said he is not totally convinced by the poll's figures: "We know that when we do surveys like this, more people claim to have done the right thing than do the right thing. I think if half of all U.S adults really had registered, we would be in much better shape than we are, so I am skeptical on those numbers."

It's too bad the poll didn't ask those who said they had not registered as organ donors two more questions: "Would you be willing to accept an organ transplant should you ever need one?" and "Why on earth should anyone donate an organ to you if you're not willing to return the favor?"

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Should age determine who gets a kidney transplant?

Should age determine who gets a kidney transplant? That's the question asked by the Chicago Tribune in a story about the United Network for Organ Sharing's proposed changes to the rules it uses to allocate kidneys recovered from deceased donors.

UNOS has proposed allocating kidneys in a way that would maximize the number of extra years lived by kidney transplant recipients.

Does it make sense to give a kidney to a 75-year-old person with a limited life expectancy when you could give it to a 35-year-old person who is likely to live a whole lot longer? Reasonable people will disagree on this question.

UNOS' proposal is controversial. But any change to UNOS' rules will be controversial, because any change will mean more transplants for some groups and fewer transplants for others.

So why not change organ allocation rules in a way that will increase the number of organs donated? Allocating fewer organs to old people won't increase the number of organ donors. Allocating fewer organs to non-donors will.

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Organs for Organ Donors in Israel?

The transplant law in Israel may be changed to put registered organ donors first on the transplant waiting list. Dr. Yaakov Lavi tells the story at Haaretz.com

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LifeSharers on The Adam Carolla Show

I was a guest on The Adam Carolla Show this morning. Click here to listen.

Adam Carolla is a comedian, and his show may seem to be an unlikely forum for talking about organ donation. But LifeSharers got more new members today than we've gotten from all of the other radio shows I've appeared on in five years.

Thanks very much to Adam and his crew.

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LifeSharers on ABC

ABC aired a story about LifeSharers on December 9, 2006, on their "ABC World News Saturday" program. Click on the video to watch it:



You can also watch the video here.

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The most heart-warming organ donation story ever?

If there is a more heart-warming story about organ donation than this one, I haven't read it:

"Love works in mysterious and wonderful ways.

Cheryl Cottle was devastated when she lost her husband, Terry, who died in 1995 at age 33.

But Terry's heart was donated for an organ transplant, and so his death saved another man's life.

And the mysterious ways of love?

Terry's heart still beats inside Sonny Graham, the man Cheryl ended up marrying nine years later."

You can read the whole story here in the Hilton Head Island Packet, or here in The State.

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Why be an organ donor?

In a North Shore Sunday column, Daniel B. Kline writes: "What I can't understand is the millions of people who support organ donation, but aren't donors. Maybe they forget, maybe they just can't be bothered..."

I think he's right about the reasons. The vast majority of people don't have any good reason for not signing up as organ donors. On the other hand, there's no down side to delaying or forgetting.

The biggest reason to sign up as an organ donor is the chance to help others. Sadly, that's not enough of a motivator for a whole lot of people. So every year, thousands of organs that could have saved lives are buried or cremated instead.

With LifeSharers, there's another reason to sign up as an organ donor -- the chance to help yourself. You give up your organs after you're dead, and you get a better chance of receiving an organ if you ever need one to live.

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A federal organ grab without consent?

Sigfrid Fry-Revere of the Cato Institute writes in the New York Post on November 2nd:

...the Department of Health and Human Services Advisory Committee on Organ Transplantation is expected to recommend that states adopt policies of "presumed consent" for organ donation.

In other words, authorities could harvest organs from your dead body without prior permission from you or your family.

If the government is really concerned with getting donor organs, it shouldn't rationalize stealing them, it should amend the National Organ Transplant Act to give people incentives for donating them.

The situation is dire. Some 93,000 Americans are now on the list to receive donated organs; last year, fewer than half got them. Twenty Americans die every day waiting for an organ that never comes.

No one seems to doubt that paying people to donate their organs after they die would dramatically increase the number of organs available - but government bodies hesitate to allow it.

Presumed consent would increase the number of organs available for transplantation. So would paying people for their organs. But neither of these is legal, and it's extremely unlikely that either will be legalized in the forseeable future. Both are total non-starters from a political standpoint because both face substantial nationwide opposition.

The LifeSharers incentive is already legal. It is also less controversial than paying for organs or taking them without consent.

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Rationing life

Today's Los Angeles Times has a story about the agonizing decisions surgeons and hospitals have to make in allocating kidneys for transplant operations. These decisions can mean life or death for patients -- life for the patient who gets the kidney, and death for the one who doesn't.

Many of these decisions would be unnecessary if Americans weren't burying or cremating 10,000 transplantable kidneys every year. What can be done about this? The United Network for Organ Sharing, which sets national organ allocation rules, has the power to make a simple policy change that would eliminate most of this horrific waste of life-saving organs.

UNOS should announce that it will move registered organ donors to the front of the transplant waiting list, and that it will move those who are not registered to the back.

This announcement would cause millions of Americans to register as organ donors. Given that most people on the transplant waiting list die waiting, the vast majority of Americans would decide that registering is a good idea. Almost everyone in the United States supports organ donation, but most people haven't registered. UNOS can provide the kick in the pants that many Americans apparently need.

According to the Los Angeles Times, over the last decade the number of people waiting for kidneys nationwide has more than doubled to about 68,500 and could reach 100,000 by 2010. If UNOS put registered organ donors first on the waiting list it could save thousands of lives every year. How many more people will die needlessly before UNOS makes this simple policy change?

In the mean time, LifeSharers offers Americans the opportunity to donate their organs to other registered organ donors. Please tell your family, friends, neighbors, and colleagues about LifeSharers. You could save someone's life, and the life you save could be your own or someone very dear to you.

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More Hawaii families are saying 'no' to organ donation

A story by Honolulu TV station KHNL reports a very disturbing trend: organ donation rates are dropping in Hawaii because families are refusing to allow transplantation of organs from registered organ donors.

According to the story, last year "only 55% of the potential donors actually became donors because family members agreed to allow their loved ones organs to be donated." But it gets even worse: "So far this year only 40% of potential organ donations actually went through because 25 families decided not to give consent even though the donor intended to."

The decisions these families made prevented about 75 transplants, since the average deceased organ donor contributes about 3 organs. So about 75 people will die or suffer needlessly.

It's outrageous to stop a relative's organs from being donated when you know that your relative wanted to be a donor. It's also outrageous that transplant and law enforcement professionals allow this to happen. Under Hawaii's anatomical gift law, "an anatomical gift that is not revoked by the donor before death is irrevocable and does not require the consent or concurrence of any person after the donor's death." (See Hawaii Revised Statutes chapter 327-2(h).) Just about every other state has a similar provision in its anatomical gift statute.

By the way, if you prevent a relative's organs from being transplanted you will remain eligible for a transplant if you ever need one. That's perhaps the most outrageous thing of all.

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L.A. Times criticizes transplant system oversight

An investigative report published by the Los Angeles Times on October 22nd criticizes the United Network for Organ Sharing. UNOS operates the national organ allocation system in the United States. According to the report, UNOS "often fails to detect or decisively fix problems at derelict hospitals — even when patients are dying at excessive rates." The report describes what it calls a "national pattern of uneven and often weak oversight" and says that at times UNOS "appears more intent on protecting hospitals than patients."

We can expect calls for improved oversight of compliance with UNOS policies. But those policies themselves also need improvement. Specifically, UNOS should allocate organs first to registered organ donors. This simple policy change would cause a large increase in the number of organs available for transplantation in the United States, and thousands of lives would be saved every year.

Problems at transplant hospitals would also be easier to spot if there were more organs to transplant.

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Washington Post editorial endorses idea behind LifeSharers

In an editorial today, the Washington Post says it's time to consider extra incentives to encourage more people to donate their organs when they die. One of the incentives it suggests sounds a lot like LifeSharers.

Among other incentives, the editorial suggests this: "The decision to pledge organs could be linked to the chance of receiving one: People who check the box on the driver's-license application when they are healthy would, if they later fell sick, get extra points in the system used to assign their position on the transplant waiting list."

This is the idea behind LifeSharers, although the details are different. The Washington Post says their suggested incentives "don't raise significant ethical issues" and "would save money and relieve suffering."

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LifeSharers on CNN

CNN aired a story about LifeSharers on September 17, 2006. Click on the video to watch it:



Bryan Stewart of OneLegacy, the organ procurement organization in southern California, said a couple of interesting things in the story.

First, Mr. Stewart said "any time you work outside of the established allocation process, you're not necessarily giving the organs to people that are most in need." This statement is true, but it is misleading. It implies that the established allocation process gives organs to people that are most in need. But that process often bypasses the person most in need. That process takes several factors into account when allocating organs, and need is only one of them.

Next, Mr. Stewart said "the likelihood that someone in LifeSharers is going to benefit from a donor that is part of LifeSharers is extremely low." Is this statement true? It depends on what you mean by "extremely low." At our current membership level, there is about a 25% chance that one or more LifeSharers members will die and become an organ donor within the next 12 months. Will any of the organs donated be a suitable match for any LifeSharers member who needs a transplant? That's impossible to know, but there are currently over 30 LifeSharers members on the national transplant waiting list so it seems likely that at least one suitable match will be found.

Whatever the odds are, it's important to keep in mind that the odds keep growing as the number of LifeSharers members increases. Statistically speaking, it's a virtual certainty that sooner or later a LifeSharers member will recieve an organ donated by another LifeSharers member. It's just a matter of time. When it happens, we expect lots of publicity and a huge number of new members.

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LifeSharers is not discriminatory

A story about LifeSharers in today's Fort Worth Star-Telegram is titled "Organ donation club called discriminatory".

Anyone can join LifeSharers. Membership is free. We welcome everyone, and we turn no one away. Can someone please tell me what is discriminatory about that?

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A good idea from Canada

Here is an excerpt from Peter Duffy's column today in the Chronicle Herald in Halifax:

"A reader named Jeff Whitman has a suggestion to increase organ donations.

He has a very simple idea. Essentially, Jeff feels those who think of others by signing a donor card should get priority if, heaven forbid, they ever need a transplant while they’re alive.

Why, he wondered, should those who refuse to be donors be allowed to be recipients?

That’s not fair, he argued. 'Those of us who sign cards should be first in line if we need a transplant.'

I told Jeff I thought it was an outrageous, unthinkable, mad idea and that it just might work."

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