In 2009, Steve Jobs received a liver transplant—not in northern California where he lived, but across the country in Memphis, Tennessee. Given the general complications of both travel and a transplant, Jobs’ decision may seem like an odd choice. But it was a strategic move that almost certainly got him a liver much more quickly than if Jobs had just waited for a liver to become available in California. Eight years later, the Apple founder’s procedure continues to highlight the state of transplants in the US: when it comes to organs, we have a big math problem.
Today, there’s a much greater need than there are organs to go around. It’s a problem currently being tackled in part by mathematicians and developers, who are crafting clever algorithms that aim to make organ allocation as fair as possible. But it’s complicated math that’s done against a backdrop of sticky ethical issues, and the debates surrounding it are heated and contentious.
The problem(s)
Before we can understand how researchers are using math to take on the bigger issues plaguing organ allocation, we have to understand what those issues are and where current strategies—mathematical or otherwise—have failed.
Organs are allocated differently depending on the organ. For hearts and lungs, the time between organ procurement and transplantation has to be kept very short. So, a recipient is first searched for within a limited radius from the donor hospital. If no suitable person is found, the radius is extended out.
For organs like kidneys and livers, the timeframe is longer, and recipients are searched for within the donor hospital’s service area, of which there are 58 in the US (they’re organized into 11 larger regions). Allocation is managed by the United Network for Organ Sharing (UNOS), a private, non-profit organization contracted by the federal government to run the Organ Procurement and Transplantation Network (OPTN).
When, for example, a liver is available for transplant, the hospital where it’s located will contact the nearest organ procurement organization (OPO). That OPO will evaluate the quality of the organ and work with the OPTN’s system to find a match for the liver (see the sidebar for details on the matching process). The recipient search uses an algorithm to find the sickest patient match on the transplant list within the donor hospital’s UNOS region, and the algorithm confirms that the organ can reach its recipient within the appropriate timeframe. Sickness for liver transplant patients is measured using the Model for End-Stage Liver Disease (MELD) score, which uses measures of the patient’s health status to determine how likely they are to die if they don’t get a transplant within 90 days. The higher the score, the sicker the patient.
In 2000, a document known as the Final Rule laid out a regulatory framework for the OPTN. For some of the guidelines laid out there, we’re doing pretty well. The Final Rule says policies should be based on sound medical judgement and should be reviewed periodically and revised when seen fit, for example. But with one particular goal, we’re failing—Final Rule says where you live shouldn’t have an effect on the likelihood of receiving an organ. Steve Jobs’ example is one entry in a lot of data that tells us otherwise.
There are major geographic disparities in organ allocation in this country. “There are areas that are organ rich and don’t have much demand, and some areas that are organ poor and have huge demand,” says Dorry Segev, the associate vice chair for research and a professor of surgery at Johns Hopkins. And these drastic differences in supply and demand have major implications for patients.
As Segev tells Ars, in some areas of the country, a person with a MELD score of 38, which is very high, would have an 85 percent chance of getting a liver in 90 days and a 15 percent chance of dying. But in other areas, someone with the same score would only have a 15 percent chance of getting a liver and an 85 percent chance of dying. “It turns out that because of the way the lines are drawn, in some areas of the country you have to achieve a much higher MELD score to get a transplant than you do in other parts of the country,” says Ryutaro Hirose, chair of the UNOS Liver and Intestinal Organ Transplantation Committee.
That’s what ultimately led to Jobs’ Tennessee-based transplant. Where Jobs lived in California, median waiting times for a liver transplant were very high, but in Tennessee, the supply and demand gap was much smaller. So, Jobs listed himself in Tennessee and, when a liver match became available, he hopped on a jet to get it. It likely dropped his wait time down from years to months.
Listing yourself for an organ in different regions or in multiple regions at once is completely legal. There are some extra costs involved beyond the ones required to travel to meet your organ at a moment’s notice, but what Jobs did is something that plenty of people do all the time.
“This builds a system by which those who are rich and powerful can get organs from anywhere in the country,” says Segev. “Those who don’t have the resources to travel, don’t have access to a private jet, don’t have the resources to even get evaluated by other transplant centers, and are stuck with the care around where they live, they get disenfranchised by the system.”
While it may be allowed, the fact Jobs needed to look for options throughout the country is a sign of how bad the geographic disparity problem has become. And if there’s a wealth gap attached to a US system, the problems soon expand to other social identities and create advantaged and disadvantaged groups despite the goal being equality.
“The biggest problem with geographic disparities is that they lead to disparities in both race/ethnic distribution of organs and socioeconomic status,” says Sommer Gentry, professor of mathematics at the US Naval Academy.
These disparities create a lot of organ waste. Areas with low demand compared to supply have the luxury of being choosy about which organs to use. “The areas that have the lowest need for organs actually squander the less ideal but still very viable organs in their area,” says Segev. In fact, if a transplant hospital refuses enough marginal organs, their OPO will eventually stop offering them, and the organ may never even be extracted. So, while someone who really needs the organ might live within transport distance, they’ll lose out because they aren’t within the designated region. “So, in general we are using fewer organs in the US because there are some advantaged areas and disadvantaged areas,” says Segev.
66 Reader Comments
There is a fairly simple way of increasing supply immediately. Implement a law assuming opt-in, meaning only if you register yourself as not wanting to donate will your organs not be put up for donation.
This is in no way forcing people to donate. It is ensuring that all but those who don't make a conscious decision to opt-out make their organs available for donation by default.
France has already done this. (Cue the jokes about the US taking France as an example.) https://www.theguardian.com/society/201 ... nation-law
Sadly, I don't expect a law like this to have a snowball's chance in hell in the current US political climate. And thus people who shouldn't have to die... will...
There is a fairly simple way of increasing supply immediately. Implement a law assuming opt-in, meaning only if you register yourself as not wanting to donate will your organs not be put up for donation.
This is in no way forcing people to donate. It is ensuring that all but those who don't make a conscious decision to opt-out make their organs available for donation by default.
France has already done this. (Cue the jokes about the US taking France as an example.) https://www.theguardian.com/society/201 ... nation-law
Sadly, I don't expect a law like this to have a snowball's chance in hell in the current US political climate. And thus people who shouldn't have to die... will...
Or perhaps in some case we can require those needing for a donor to recruit one or two donors?
There is a fairly simple way of increasing supply immediately. Implement a law assuming opt-in, meaning only if you register yourself as not wanting to donate will your organs not be put up for donation.
This is in no way forcing people to donate. It is ensuring that all but those who don't make a conscious decision to opt-out make their organs available for donation by default.
France has already done this. (Cue the jokes about the US taking France as an example.) https://www.theguardian.com/society/201 ... nation-law
Sadly, I don't expect a law like this to have a snowball's chance in hell in the current US political climate. And thus people who shouldn't have to die... will...
What should be done before this is to make it so that your family cannot over-rule the deceased's wishes. I don't know if this is the case in the USA, but it is in a lot of other countries. Even if someone has pro-actively registered as a donor, if the time comes their next of kin can say nope!. That's not right. My body, my choice.
Although I agree that organ donations should be opt-out, rather than opt-in, many societies aren't quite ready to accept that yet. Better to focus on encouraging people to become donors, and to make sure that as many current donors as possible get the chance to save someone else's life.
There's also the whole argument involving legalizing organ sales/payment but that has its own issues.
The next best thing would perhaps be to tax people who choose to not participate. If you truly care about some sort of sanctity of your dead body, it shouldn't be a problem to pay for it. We tax many other things that we have a right to - I don't see this as infeasible (but also probably unpopular).
There is a fairly simple way of increasing supply immediately. Implement a law assuming opt-in, meaning only if you register yourself as not wanting to donate will your organs not be put up for donation.
This is in no way forcing people to donate. It is ensuring that all but those who don't make a conscious decision to opt-out make their organs available for donation by default.
France has already done this. (Cue the jokes about the US taking France as an example.) https://www.theguardian.com/society/201 ... nation-law
Sadly, I don't expect a law like this to have a snowball's chance in hell in the current US political climate. And thus people who shouldn't have to die... will...
Or perhaps in some case we can require those needing for a donor to recruit one or two donors?
Sure, they can recruit donors, but the supply-side issue remains - unless you mean "render brain dead" by recruit.
The next best thing would perhaps be to tax people who choose to not participate. If you truly care about some sort of sanctity of your dead body, it shouldn't be a problem to pay for it. We tax many other things that we have a right to - I don't see this as infeasible (but also probably unpopular).
Everyone has the same right to fair and equal healthcare. You shouldn't put a price on organ transplants, and the donor's estate should not receive any money for donating. A black market for human body parts sounds like all kinds of terrible.
Likewise if someone wants to donate their body to science, that's their prerogative. But as soon as money starts exchanging hands, philanthropy goes out the window and corruption / abuse / inequality come in.
NO.
The next best thing would perhaps be to tax people who choose to not participate. If you truly care about some sort of sanctity of your dead body, it shouldn't be a problem to pay for it. We tax many other things that we have a right to - I don't see this as infeasible (but also probably unpopular).
Commercializing organs has never been though of as a viable solution. Otherwise, there may be an undue incentive to knock off an unfavored family member to benefit from the organ sales...
There is a fairly simple way of increasing supply immediately. Implement a law assuming opt-in, meaning only if you register yourself as not wanting to donate will your organs not be put up for donation.
This is in no way forcing people to donate. It is ensuring that all but those who don't make a conscious decision to opt-out make their organs available for donation by default.
France has already done this. (Cue the jokes about the US taking France as an example.) https://www.theguardian.com/society/201 ... nation-law
Sadly, I don't expect a law like this to have a snowball's chance in hell in the current US political climate. And thus people who shouldn't have to die... will...
What should be done before this is to make it so that your family cannot over-rule the deceased's wishes. I don't know if this is the case in the USA, but it is in a lot of other countries. Even if someone has pro-actively registered as a donor, if the time comes their next of kin can say nope!. That's not right. My body, my choice.
Although I agree that organ donations should be opt-out, rather than opt-in, many societies aren't quite ready to accept that yet. Better to focus on encouraging people to become donors, and to make sure that as many current donors as possible get the chance to save someone else's life.
Working with an OPO, I know that many times they go along with the family - as it only takes only one "they killed my family member for their organs!!!" news article published by an angry family to kill off donation in the area.
The next best thing would perhaps be to tax people who choose to not participate. If you truly care about some sort of sanctity of your dead body, it shouldn't be a problem to pay for it. We tax many other things that we have a right to - I don't see this as infeasible (but also probably unpopular).
Commercializing organs has never been though of as a viable solution. Otherwise, there may be an undue incentive to knock off an unfavored family member to benefit from the organ sales...
False https://encrypted.google.com/search?hl= ... lution.com
Iran of all places has an incredibly successful result of having organ sales for kidneys http://econlog.econlib.org/archives/201 ... nberg.html
Many people think it's both a good solution and a humane one. Just because the echo chamber would rather people die out of fear of an unverifiable outcome doesn't mean that echo chamber is correct.
Organ sales would save far more lives than we do today, and it's the lack of a market that brings illegal organ trade in the first place (not to mention most of all more dead people who don't get what they need)
This lack of market is what enables organ inequality, just like any other over-regulated segment tends to.
That Ars doesn't even mention/discuss sales of organs in their article trying to solve the very availability problem pretty much proves my point they are part of the general echo chamber everyone lives in but doesn't believe it.
Last edited by jeffbax on Wed Mar 15, 2017 6:53 am
Spain, like other European countries have something the US lacks: presumed consent for organ donation. If you don't want to be an organ donor, you need to actively opt out.
The next best thing would perhaps be to tax people who choose to not participate. If you truly care about some sort of sanctity of your dead body, it shouldn't be a problem to pay for it. We tax many other things that we have a right to - I don't see this as infeasible (but also probably unpopular).
Commercializing organs has never been though of as a viable solution. Otherwise, there may be an undue incentive to knock off an unfavored family member to benefit from the organ sales...
It is both supported and opposed by many in the current ethics theory tradition. Economists tend to like the idea because organs are highly specialized goods that cannot be priced adequately and have tremendous value to the recipient. So you have a system with lots of deadweight loss and relatively easy gains to be had.
If you murder someone, you (likely) go away for murder - having an organ market doesn't change that.
I'm a physician currently working in one of these oversubscribed regions (7). Any given month I am taking care of at least 20-30 pre-transplant patients who have been listed but awaiting transplant due to high MELD requirements in region 7 compared to other neighboring states. While this article does point out the fallacies in the OPTN and UNOS allocation system, there is a bigger elephant in the room that is not being addressed - opt in organ donation.
Most people in US are required to opt in to become an organ donor. This usually happens at 2 places - DMV or when you're on your deathbed in a healthcare setting.
There are nuances in physician/patient/family communication which make discussing organ donation difficult in the healthcare setting. I can see how certain families feel that their family member was "killed/murdered" in order to "get their organs". This is why it is important to state your wishes to be an organ donor beforehand.
If you look at the European transplant data, they are now transplanting for some "fringe" diseases (like cholangiocarcinoma) which are still considered experimental in the US. This is primarily because they have an excess of organs. In Europe, you have to opt out of becoming an organ donor compared to here where you have to opt in. When you have an excess of organs, the wait times are lower and quality of organs will become better.
A few months ago, I was at the DMV standing behind a man who was asked by the DMV agent if he wanted to be an organ donor. His response - "I don't want my organs to go to someone who I do not know". This does not even make any sense but we as pre-transplant physicians deal with the reality of these choices everyday.
Our current system will be heavily strained over the next few decades with the exponential expansion of obesity and its metabolic complications including NASH (which ultimately can lead to cirrhosis needing a liver transplant).
I urge every ars reader to consider listing as an organ donor yourself and encourage your families to do so as well.
The next best thing would perhaps be to tax people who choose to not participate. If you truly care about some sort of sanctity of your dead body, it shouldn't be a problem to pay for it. We tax many other things that we have a right to - I don't see this as infeasible (but also probably unpopular).
Everyone has the same right to fair and equal healthcare. You shouldn't put a price on organ transplants, and the donor's estate should not receive any money for donating. A black market for human body parts sounds like all kinds of terrible.
Likewise if someone wants to donate their body to science, that's their prerogative. But as soon as money starts exchanging hands, philanthropy goes out the window and corruption / abuse / inequality come in.
NO.
And people should die because the outcome isn't fair in nominal terms? Outcomes are never fair - but with a regulated market, you have a transfer of wealth from the rich to the poor, people who wish to give up organs for free remain at liberty to do so, and if there is sufficient supply prices will be driven down.
There's also the issue of allowing people to do what they want with their own bodies - if you are pro-choice and aren't against the sale of sperm/eggs, I don't see a leap of faith from that to postmortem organ sale contracts.
Spain, like other European countries have something the US lacks: presumed consent for organ donation. If you don't want to be an organ donor, you need to actively opt out.
While I probably favor this in a practical sense, it would blow my mind if people think that the government presuming to just take is more ethical than allowing people the choice of sale while they are alive.
Last edited by jeffbax on Wed Mar 15, 2017 6:53 am
I'm a physician currently working in one of these oversubscribed regions (7). Any given month I am taking care of at least 20-30 pre-transplant patients who have been listed but awaiting transplant due to high MELD requirements in region 7 compared to other neighboring states. While this article does point out the fallacies in the OPTN and UNOS allocation system, there is a bigger elephant in the room that is not being addressed - opt in organ donation.
Most people in US are required to opt in to become an organ donor. This usually happens at 2 places - DMV or when you're on your deathbed in a healthcare setting.
There are nuances in physician/patient/family communication which make discussing organ donation difficult in the healthcare setting. I can see how certain families feel that their family member was "killed/murdered" in order to "get their organs". This is why it is important to state your wishes to be an organ donor beforehand.
If you look at the European transplant data, they are now transplanting for some "fringe" diseases (like cholangiocarcinoma) which are still considered experimental in the US. This is primarily because they have an excess of organs. In Europe, you have to opt out of becoming an organ donor compared to here where you have to opt in. When you have an excess of organs, the wait times are lower and quality of organs will become better.
A few months ago, I was at the DMV standing behind a man who was asked by the DMV agent if he wanted to be an organ donor. His response - "I don't want my organs to go to someone who I do not know". This does not even make any sense but we as pre-transplant physicians deal with the reality of these choices everyday.
Our current system will be heavily strained over the next few decades with the exponential expansion of obesity and its metabolic complications including NASH (which ultimately can lead to cirrhosis needing a liver transplant).
I urge every ars reader to consider listing as an organ donor yourself and encourage your families to do so as well.
Welcome! I just wanted to say, thanks for the added insight; it's always interesting to get a perspective from someone in the trenches, so to speak.
I find this disgusting. Because Jobs was rich, and able to afford that kind of transportation, he jumped ahead of other, less fortunate, patients.
I understand the the current system needs some improvement, but if you have a system, its rules need to be followed consistently (or at least, broken consistently). You shouldn't be able to jump the line because of wealth or fame.
There is a fairly simple way of increasing supply immediately. Implement a law assuming opt-in, meaning only if you register yourself as not wanting to donate will your organs not be put up for donation.
This is in no way forcing people to donate. It is ensuring that all but those who don't make a conscious decision to opt-out make their organs available for donation by default.
France has already done this. (Cue the jokes about the US taking France as an example.) https://www.theguardian.com/society/201 ... nation-law
Sadly, I don't expect a law like this to have a snowball's chance in hell in the current US political climate. And thus people who shouldn't have to die... will...
What should be done before this is to make it so that your family cannot over-rule the deceased's wishes. I don't know if this is the case in the USA, but it is in a lot of other countries. Even if someone has pro-actively registered as a donor, if the time comes their next of kin can say nope!. That's not right. My body, my choice.
....
Can't up vote this enough. In Australia, even if you've taken the trouble to register as an Organ Donor (we're still unfortunately opt-in), your next of kin can still overrule your wishes and deny donation of your organs if/when the time comes.
https://www.youtube.com/watch?v=Mo01RI2-DdU
I urge every ars reader to consider listing as an organ donor yourself and encourage your families to do so as well.
Excellent advice. I would add that you should also discuss your decision with your family, so that if the time ever comes for them to make the decision at what is the worst possible time for them, at least they'll know your wishes and may take some comfort in your death giving life to others. (And hopefully they won't deny the donation as an emotional reaction at a very difficult time.)
That's more true than not. In the US a hospital is not obligated to provide expensive care like an organ transplant. They'll give a person a bed and some meds to stabilize the patient, but the medical institution has a fiduciary responsibility to stay solvent. Pre-ACA, because of the lifetime benefit caps, even people with insurance typically exceeded their limits and then had to pay the balance out of pocket. Plus the insurance was no longer obligated to pay any additional claims, ever.
There's a bit of a donut hole here. People who were very poor often qualified for charity care that would cover expensive procedures. But someone over the poverty line ($11K for a single person) are screwed if they don't have insurance.
https://www.youtube.com/watch?v=aclS1pGHp8o
Did you hold your tongue when hearing that, or try to talk him down from his stupidity?
Sure, it sounds more principled than "I like the current redistribution scheme better than the one being proposed!"; but that doesn't make it any less nonsensical.
How can be more fair to the poor when it is subjected at the market laws?
Wow deep
It is easy to understand that some people have moral and ethical objections to the idea of selling organs. And I don't think the best solution for the US is to buy and sell organs on ebay like used car parts. No one is actually arguing for such an outcome. But there are ways to harness real financial incentives to encourage people to donate their organs, and to encourage families to not go against the wishes of someone who wants to donate their organs upon death.
For example, the average funeral in the US costs over $10,000. The costs of dealing with someone's estate after death are also significant. We could easily allow hospitals and/or health insurance companies to make posthumous payments to a family specifically for funeral costs. The same could be done to compensate a donor for lost work and recovery time if they donate an organ.
We need to see that there are common sense financial incentives that we could use to increase donation without encouraging people to "bump off" family members for organ money, as someone above mentioned.
Also on a complete side note, the Ars community is gaga for self-driving cars, but how many of you have thought about the impact of self-driving cars on the supply of organs for donation. Currently car accidents are the number one source of organs for donation. Some people lament how stupid the idea of driving is; how humans should not be allowed to drive, and how self-driving cars will end auto accidents and reduce highway deaths. What will we do once all of those organs are no longer available for donation?
If you do need a transplant, though, the folks at Beth Israel in Boston are second to none, even if the wait can be long.
There is a fairly simple way of increasing supply immediately. Implement a law assuming opt-in, meaning only if you register yourself as not wanting to donate will your organs not be put up for donation.
This is in no way forcing people to donate. It is ensuring that all but those who don't make a conscious decision to opt-out make their organs available for donation by default.
France has already done this. (Cue the jokes about the US taking France as an example.) https://www.theguardian.com/society/201 ... nation-law
Sadly, I don't expect a law like this to have a snowball's chance in hell in the current US political climate. And thus people who shouldn't have to die... will...
What should be done before this is to make it so that your family cannot over-rule the deceased's wishes. I don't know if this is the case in the USA, but it is in a lot of other countries. Even if someone has pro-actively registered as a donor, if the time comes their next of kin can say nope!. That's not right. My body, my choice.
Although I agree that organ donations should be opt-out, rather than opt-in, many societies aren't quite ready to accept that yet. Better to focus on encouraging people to become donors, and to make sure that as many current donors as possible get the chance to save someone else's life.
I'm American, and the reason I am not quite ready to accept an opt-out system is that access to health care is not available at the same level to people of all social classes. Those countries that you mention, I'm willing to wager that they all have universal tax-funded coverage.
I used to be a donor, and I refuse to become one again unless the health care system becomes more egalitarian. Otherwise, people are donating organs primarily for the affluent to extend their lives.
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