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May 24, 2006

Friends in Strange Places

Savor this, because it's a rare moment of total agreement between me and The Weekly Standard, but our organ donation system is totally fucked up. It's just stupid, it's deadly. The medical community has adopted a bizarre stance of non-interference in the organ line. Here's the scenario: you have kidney failure, dialysis twice a week. Dialysis is soul-crushing stuff; hours hooked up to a machine as it cleanses your blood of poisons your kidneys aren't discarding. It's tough on your heart, bad for your life expectancy, rough on your spirit. None of your friends or family provide a kidney match, but a newspaper reporter hears of your plight and writes an article. A stranger comes forward -- she's compatible, and willing to give up the kidney. And then you get a call: the hospital won't do the transplant, it's official policy to refuse those attempting to subvert the waiting list.

Right now, most organs come from cadavers. There's no incentive structure for the average person to donate body parts. It's not that giving up a kidney hurts you, but since all you get is the warm and fuzzies, might as well keep yours close. We've stupidly disallowed payment for organs (if money can't buy you life, why keep it around?), a market that would do nothing to subvert the current cadaver-based waiting list, but would take quite a few wealthy folks off the rolls. Worse, some hospitals have extended that prohibition to organs located through publicity. A donation, if given through a friend or relative, is perfectly kosher. According to Arthur Caplan, a bioethicist at the University of Pennsylvania, "web-based donation and ads

amount to a "high-priced begging campaign," and he disapproves. After all, he says, such efforts comprise an "attempt to subvert the waiting list."' Can't have that.

Ben Hippen, a transplant nephrologist, gets the last word: "A commitment to equal treatment is key to maintaining our patients' trust," Hippen says, "but if recipients view the waiting list as simply an equal opportunity to die, we will lose that trust, and deservedly so." Organ markets and digital begging campaigns may be a bad solution, but they're better than the current regime. In this case, the perfect is being made the enemy of the patients.

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Note that there is no reason that whether there is a market in organs has to be decided the same way across the board. The medical facts may justify markets in some situations and not others. By way of example, it strikes me that we could reasonably have a market in live-donor kidneys but not a market in live-donor corneas.

Posted by: alkali | May 24, 2006 2:11:23 PM

AMA as NRA: When human internal organs have market prices, only the rich will have organs. eBay, baby!

Why not also make it legal to commit suicide by selling a live organ for transplant (a heart or a brain or a liver) to fund your child's college education?

Another idea: selling a kidney will get an illegal immigrant a jump into the line for US citizenship.

Posted by: JimPortlandOR | May 24, 2006 2:48:24 PM

Bioethicism is a stupid, evil profession. It's these same "bioethicists" - for example, Leon Kass - who think it's evil to try to stop or reverse the aging process.

Why should these freaks have any influence over our lives at all? Who elected them?

Posted by: Firebug | May 24, 2006 2:54:53 PM

"...a market that would do nothing to subvert the current cadaver-based waiting list, but would take quite a few wealthy folks off the rolls."

Don't be so sure, Ezra. Very wealthy individuals may be able to pay to get healthy individuals to donate organs. In that case, the market provides incentives to people to donate who would not normally do so, and increased supply helps everyone. But slightly less wealthy individuals, unable to pay the top dollar that the super-rich pay, would offer donor contracts. You receive X amount from me now (or upon your death) in exchange for willing me your organs upon your death. Death contracts of this sort would pull people from the cadaver-based donation pool.

You can also imagine insurance companies giving premium breaks or other benefits to members who opt into company "organ donor" programs, where an insured wills their organs to the insurance company upon his death, such organs to be distributed to participants on the insurance company's own "waiting list", where getting on an insurance company waiting list, and where you sit on it, is a matter of paying a fee.

Markets are hard to control. Designing a market system that encourages organ donation but that doesn't simultaneously encourage people to opt out of the compensation-free cadaver-based donation system will be tricky.

Posted by: Nate | May 24, 2006 2:57:56 PM

I like your idea Nate.. getting people to sign up by saving them money. Might even work. ..lets see the Geico gecko pull that one off. "Just give us 15 minutes after your dead, and we'll save you hundreds in health insurance."

Now back to Ezras post.. The 'list' was created to give people as much of a equalized chance as we can get. You cant tell me there isn't a multi-millionaire out there that has setup some guy for life in exchange for 'happenning' to show up with a matching kidney. Of course noone would do that... and noone cheats on their taxes either.

Imagine the outcry from the softhearted non-thinkers among us if people could just buy kidneys and bypass the sobstory 12 year old with poverty stricken parents sitting at the top of the list.

What we really do need is a clearer, and easier way for more people to declare their willingness to be donors. Its rediculous the lengths people have to go through, and the verification that hospitals have to go through with family. ..of course maybe it truly is that people just dont want to be donors and makig it easier would still do nothing, could be I guess.

Posted by: david b | May 24, 2006 3:27:33 PM

My wife is on the waiting list for a new liver, and while my sympathy goes out to all patients currently on this difficult path, I would defend the present system to
some extent, based on our experience.

Organs are an extremely rare and precious commodity. Obtaining one is only part of the equation...the potential benefit to the recipient has to be considered as well.

In the famous case of the man in Houston who obtained a new liver by advertising on billboards, he was dead 8 months after transplant because the liver cancer in his original liver was too advanced. Another patient may have gained 20 years of added life from that donated liver. This is one of the objections (valid in my view) of the ethicists.

Many patients on waiting lists die because a sudden or dramatic deterioration in their condition makes them unsuitable for transplant. My wife was subjected to a week of intensive testing and imaging of every organ system,,,heart, kidneys,
bone scan etc etc, before she was deemed a suitable candidate and listed. She
is screened every month in order to maintain her status.

This is an extremely complicated process. You don't just go out and find a new organ and slap it in some sick person's body. The condition of the donated organ is an important factor as well. If some guy on the internet offers you a
kidney and it's old or defective, you're stuck with it.

I tend to agree with david b that the answer is a better system for donation.
This is an area where the "free market" is a truly terrible idea.

By the way, Ezra, your work on health issues is excellent and your blog is a
daily stop for me. We'll agree to disagree here.

Posted by: Mike | May 24, 2006 4:14:13 PM

Now back to Ezras post.. The 'list' was created to give people as much of a equalized chance as we can get. You cant tell me there isn't a multi-millionaire out there that has setup some guy for life in exchange for 'happenning' to show up with a matching kidney. Of course noone would do that... and noone cheats on their taxes either.

Imagine the outcry from the softhearted non-thinkers among us if people could just buy kidneys and bypass the sobstory 12 year old with poverty stricken parents sitting at the top of the list.

But that's not what Ezra's talking about. The article isn't talking about people paying to go to the head of the line, it's about people paying to get out of line by bring in an additional organ. Suppose there are 100 people waiting on a list for kidneys of a certain tissue type, people of that type die roughly once every six months, and a diabetic poverty-stricken 12-year-old is at the top of the list and Robert Downey Jr. is #50. Under the current system, she'd get a kidney six months from now. If people could sell kidneys, RDJ would buy one from his gardener or someone else who otherwise wouldn't be donating it at all, the cute little girl would get one in six months just like she would have in the current system, and everyone behind RDJ in line would get one six months sooner.

I'm not sure what I think of this; that "bring in an additional organ" sounded pretty dehumanizing. And of course, the devil is always in the details; just because Ezra doesn't want to cause what you're talking about, doesn't mean it couldn't happen anyway. The assumption (which seems safe to me, but we should be aware of what it is) is that the same people who have always donated on death would continue to do so. But it seems to me that the idea is to increase the size of the donor pool by letting people sell their organs, not to punish the poor.

Posted by: Cyrus | May 24, 2006 4:28:40 PM

David, I would contest your characterization of the problem as stemming from overly complicated organ donation paperwork. From what I understand, the main thing keeping organ donations down is how rare it is to die in a way that makes organ donation an option.

In order to donate, you pretty much have to die in a hospital of something that doesn't kill your organs. The best cases are people who die of a stroke or headwound, something that kills you but leaves your body intact. Die at home? No good. Your organs are all dead by the time the medical team gets there. Die of cancer? No good. By the time it kills you, the cancer's everywhere. Die in an accident? No good. Your organs have all shut down from the blood loss. From what I've read, everyone in America could be an organ donor and there still wouldn't be enough people who die in the right circumstances to get an organ to everyone who needs one.

Posted by: Nate | May 24, 2006 5:04:11 PM

Nate, good post. Also, many people don't realize that your position on the waiting list is determined by your medical condition, not the amount of time you have been listed.
The diabetic poverty-stricken 12-year-old at the top of the list will get the next
compatible kidney in her geographic region if she is sick enough. I met a teenage girl in California who collapsed from Wilson's disease in school on Tuesday and was given a liver transplant on Thursday.

Robert Downey Jr., on the other hand, even with a bought and paid for kidney donor would be denied a transplant by the transplant center if he tested positive for illegal
drugs, or had any of a number of other disqualifiers. He would need documented rehab and months of random drug testing to qualify.
(I guess he could always go to China or India)

There are an infinite number of variables which can mean the difference between life and death. Having the money to hypothetically buy an organ is no guarantee of survival, whether you're RDJ or the little girl.

If you are interested in detailed information about transplants and the allocation of organs:

http://www.optn.org/
http://www.ustransplant.org/

Posted by: Mike | May 24, 2006 5:51:15 PM

"Bioethicism is a stupid, evil profession." -- Um, no. Like most professions, it includes good and bad people, but I think it has done a lot of good. When bioethics got started, people argued in good faith that it was OK to perform experiments on people without their consent, or even their knowledge, for the higher good. (Analogy: the draft.) It's largely due to bioethics that that doesn't happen any more.

On Ezra's post: of course, this is only an issue when living people can donate organs. (Kidneys, yes; hearts, no.) The crucial question, I think, is to what extent the people who agree to donate kidneys for money, or in response to ads etc., would be on the transplant list in any case. If they would not -- if all this does is increase the supply of organs -- then I think it would be fine, and I suspect most bioethicists would agree. If, on the other hand, all the people who would give organs in this way were on the transplant list, so that allowing these transplants didn't mean that more people got organs, but just that a fair way of deciding who gets them was replaced by an arguably unfair way, probably most people would think it was a bad idea.

Presumably, the answer is: allowing off-list donations would bring in some new organs, but also remove some from the existing system. The problem is, first, figuring out to what extent these policies would bring in new organs, and second, how to handle the tradeoffs between more organs and less fairness. (Less fairness not because of the existence of the new system, but because of the reduction in organs available under the old one.)

Posted by: hilzoy | May 24, 2006 6:35:42 PM

I've always thought that there's a fair and simple solution to most organ shortages, but nobody seems to agree. But I'll post it here one more time just in case I manage to convince someone.

There should be a nationwide list of people who want to reserve the right to receive an organ transplant, and everyone who is on it must agree to donate his or her organs after death. By default, people would not be on this list, so they can keep their organs upon death and would not be able to receive organ donations.

Some details:

1) Want to change your mind and get on the organ donor/recipient list? You immediately become an organ donor and you have to wait 10 years to become an organ recipient. Want to change your mind and get off the organ donor/recipient list? You are immediately taken off of the organ recipient list and have to wait 10 years before you are no longer a potential organ donor. No fair gaming the system because you suddenly need a kidney or because you're fairly sure that you're going to die in the next few weeks.

2) Children under 18 would have their status determined by their parents. Upon turning 18 and until the age of 20 these young adults can move fully off of or fully on to the list without having to endure the 10-year waiting periods in part 1 above.

3) Being on the list means that you are in theory willing to donate your organs. If for whatever reason your organs are unusable at any time up until your death, it's okay -- you won't be taken off of the recipient list. Your corpse may be used for medical experimentation, as long as this experimentation does not leave your corpse undisplayable at the funeral. Or perhaps nothing will be done to your body whatsoever even though you were on the list. Lucky you.

4) Your relatives have no say whatsoever about organ donation after your death. You signed on to the list, they will have to deal with the fact that your corpse will be interred without a kidney or a cornea or whatever.

5) This is only about organ donation -- you and your estate still own your DNA after death.

6) What about those who leave the country shortly before death so that they can be buried intact outside the U.S.? Or those who commit suicide by setting themselves on fire? I don't know -- a few people will always slip the cracks. In the first case, you could make the estate (or living trust or whatever) pay repatriation and/or investigation costs if it could be determined that there was a conscious, pre-planned attempt to evade responsibility for joining the list. In the second case, well, if people are that spiteful, there's nothing you can do. But this isn't a major issue -- usable organs are going to come from those who die suddenly, not those who die of old age.

I do realize that this plan is completely impossible to enact in a political sense, but it strikes me as being simple, straightforward, and fair. Not only that, this plan would address not just kidney shortages, but would make a serious dent in all organ shortages.

But for those of you that dismiss this as a political non-starter, I would argue that buying and selling kidneys at "market rates" should be too. I would hit any proposed bill of that kind with a rider that stated that the recipient must pay for the donor's health insurance and all deductibles until he or she dies, all costs associated with donation (including lost work time), and must pay for a $200,000 life insurance policy for the donor for 20 years (or just give him/her $200,000). That seems only fair, and it would have the added benefit of shutting up the libertarians.

Posted by: no name | May 24, 2006 7:19:19 PM

mike...

i hope your wife receives a successful liver transplant very soon.
with best wishes for good health,strength and good luck.

Posted by: jacqueline | May 24, 2006 9:53:12 PM

From the get-go organ harvesting has been seen as being absolutely loaded with potential for abuse : from taking them from convicts or trading on international markets to new uses for slaves. The bio-ethicist may not seem reasonable but society needs to be protected, not just potential recipients.

Posted by: opit | May 25, 2006 1:41:18 AM

They should just build new organs out of animal parts. If you've ever eaten a chicken liver, you know it's just basically a uniform lump of "stuff." It's just a blood filter, after all. Just like the filter on a window-mounted air conditioner, where you buy a "sheet" of filter and cut it to fit your particular model, you should be able to just take a bunch of animal livers, mush them together into a human liver shape, and shove it in. People get pig hearts, right? This should be extended to other organs.

Posted by: tps12 | May 25, 2006 4:30:17 PM

I expect this will be a moot point pretty soon. Tissue cloning is making some pretty big strides and we will probably be able to make all the organs we need before too much longer.

Posted by: Dave Justus | May 26, 2006 8:29:59 AM

"no name" suggested that only registered organ donors should be eligible to receive transplants. A private organization called LifeSharers has implemented his basic idea, although the some of the details are different.

LifeSharers is a network of organ donors. Members agree to donate their organs when they die. They also agree to offer their organs first to fellow members, if any member is a suitable match, before making them available to the general public. Membership is free and open to all at www.lifesharers.org or by calling 1-888-ORGAN88. Everyone is welcome. No one is excluded due to age or pre-existing medical condition.

By giving registered organ donors preferred access to transplantable organs, LifeSharers creates a strong incentive for people to become registered organ donors and join the network.

Giving organs first to registered organ donors also makes organ allocation fairer. About 60% of the organs transplanted in the United States go to people who have not agreed to donate their own norgans when they die.

LifeSharers uses a form of directed donation that is legal under federal law and under the laws of all 50 states. So while "no name" is probably correct that his plan is a political non-starter, LifeSharers doesn't require legislative action -- it's already legal.

If you want to increase your chances of getting a transplant if you ever need one, please join LifeSharers.

Posted by: David J. Undis | May 28, 2006 2:56:24 PM

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