In Georgia, you get a $7 discount on your drivers license fee if you register as an organ donor. The state legislature has passed a bill, backed by the governor, to end this discount.
According to a story in Monday's Savannah Morning News, data from the Georgia Department of Motor Vehicle Safety shows that drivers who are eligible for the discount are up to 40% more likely to sign up as donors than those who don't qualify for the discount, such as veterans who get their licenses for free.
That's a whole lot of people who would rather bury their organs than save several lives if they don't get $7. This is more proof that altruism will not solve the organ shortage. There just aren't enough people who are generous enough to share the gift of life with their fellow man.
To get more organs, we need to provide people with an incentive. That's what LifeSharers does. We give people a better chance of getting an organ if they ever need one to live, in exchange for a promise to donate their organs when they die.
There's another benefit to joining LifeSharers -- your organs are less likely to go to someone who thinks your life is worth less than $7.
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Wednesday, April 06, 2005
Thursday, March 31, 2005
The good news and the bad news about organ donation
The number of organ transplants in the United States increased 6% in 2004. That's over 27,000 lives saved. Organs from deceased donors were up 11%, and organs from live donors were up 2%. That's the good news.
Here's the bad news:
- Last year 43,128 people were added to the national transplant waiting list.
- Last year 6,228 people were removed from the waiting list because they had died. Another 1,594 were removed from the list because they had become too sick to undergo transplant surgery.
- At the end of 2004, over 87,300 people were on the national transplant waiting list. That's up from about 83,900 at the end of 2003.
Here's more bad news. While 90% of Americans support organ and tissue donation:
- only 62% say they would be willing to donate some or all of their organs and tissue when they die, and
- only 55% of Americans agree to donate the organs of a deceased relatives when asked for their consent.
The organ shortage continues to get worse because Americans bury or cremate about 20,000 transplantable organs every year. That means thousands of Americans are buried every year next to the organs that could have saved their lives.
Most people don't have any good reason not to donate their organs when they die. But they don't have any good reason to donate them either. LifeSharers gives people a good reason - a better chance of getting a transplant if they ever need one.
Data sources:
Fox News
UNOS
Coalition on Donation
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Tuesday, March 08, 2005
Change Organ Allocation to Increase Organ Supply
(The following is the text of a speech, as prepared for delivery, at a DePaul Law Review and Health Law Institute Symposium: “Precious Commodities – The Supply and Demand of Body Parts” in Chicago on March 4, 2005)
CHANGE ORGAN ALLOCATION TO INCREASE ORGAN SUPPLY
by
David J. Undis
If we change how we allocate organs we will get more organs to allocate.
We should allocate organs first to people who have agreed to donate their own organs when they die. This will cause many more people to register as organ donors, and save thousands of lives every year. Increasing the supply of organs this way is fair and simple, and it can be implemented without legislative action. It is already legal.
Would changing the organ allocation system really increase the supply of organs?
Imagine that the United Network for Organ Sharing made the following announcement tomorrow: “Beginning January 1 of next year, we will make no human organ available for transplantation into any person who is not a registered organ donor. The only exceptions will be directed donations and cases where no registered organ donor matches an organ that is available.”
Following the announcement of this policy change, millions and millions of people would register themselves and their children as organ donors. Wouldn’t you?
Registering as an organ donor would give you a better chance of getting an organ if you ever needed one. Deciding not to register would reduce your chance. When you consider that more than half of the people who need a transplant in the United States die before they get one , improving your odds could literally mean the difference between life and death. Agreeing to donate your organs after you die is a small price to pay for a better chance to get an organ if you ever need one to live. Almost everyone would decide to pay that price. The supply of organs would go way up, and thousands of lives would be saved every year.
Last year, there were about 7,000 deceased organ donors in the United States, and they provided the organs for about 20,000 transplants. But organs are transplanted from less than half of the eligible deceased donors. That means we could get up to 20,000 additional organs every year by changing the organ allocation system. To put that number in perspective, keep in mind that last year about 6,000 people were removed from the national transplant waiting list because they died and 1,500 more were removed because they became too sick to undergo surgery. So with an additional 20,000 organs per year, we could eliminate most of those deaths, reduce the size of the waiting list, and shorten waiting times for people still on the list.
We don’t need medical breakthroughs to achieve these results. All we need is behavior change. Only about 30% of Americans have signed up to donate their organs when they die. And Americans donate only about 50% of the organs that could be transplanted. They bury or cremate the rest. All we need to do is convince people to stop throwing away organs that could save their neighbors’ lives. Changing how we allocate organs will produce that behavior change.
The idea of giving registered organ donors an allocation preference is not new. It has been around for at least 15 years. Everyone who has suggested it has predicted that it would significantly increase the supply of organs. Some have said it would completely eliminate the waiting list. Even opponents of the idea generally concede it would increase supply. They say it isn’t fair.
So, is it fair to allocate organs first to registered organ donors?
Yes, in fact it makes the organ allocation system fairer.
What isn’t fair is giving an organ to someone who won’t donate their own, when there is a registered organ donor who needs it. It’s like awarding the lottery jackpot to someone who didn’t buy a ticket.
When you die, you can bury your organs, cremate them, or donate them and save lives. When those are your only choices, deciding not to donate is a spectacularly selfish thing to do. People who make that decision have no moral claim to an organ transplant.
Without organ donors there can be no organ transplants. Giving organs first to organ donors produces more organ donors, and that saves more lives.
The primary goal of the organ allocation system should be to save as many lives as possible. Other goals should be secondary.
It would be simple for UNOS to change its allocation system to put registered organ donors first. UNOS could simply add a field to its waiting list database. That field would show whether or not a potential organ recipient is a registered organ donor. Then when an organ becomes available, instead of offering it first to the highest-ranked person on its match run, UNOS could offer it first to the highest-ranked registered donor.
Putting organ donors first has an important advantage over most other suggestions for increasing the supply of organs. No legislative action is needed to implement it. UNOS already has the authority to give registered organ donors an allocation preference. The UNOS Ethics Committee acknowledged this fact in its 1993 white paper titled “Preferred Status For Organ Donors.” They wrote: “a trial could be implemented without requiring any alteration in existing legislation.”
In fact, UNOS already moves live donors up the waiting list if they later need a transplant. UNOS can, and should, do the same for people who agree to donate when they die.
Congress has never made tackling the organ shortage a priority, and there is no reason to think they will do so in the foreseeable future. Anyone who cares about the more than 87,000 people now on the national transplant waiting list should an approach to increasing the organ supply that does not depend on legislative action.
To review, changing the national organ allocation system could save thousands of lives a year and improve the system’s fairness. And UNOS has the power to implement this simple change. So, what is UNOS’ position on this? It hasn’t really taken one.
The closest it came to doing so was in 1993. But its white paper on the subject ultimately stopped short. It only recommended “wider societal discussion before considering concrete plans for implementation” of any system.
UNOS has not led the discussion it recommended. It has been largely silent on the subject since the publication of its white paper almost 12 years ago. That is unfortunate. Over 55,000 people on the UNOS waiting list have died over the last 10 years. Most of those deaths could have been prevented.
Fortunately, as individuals we don’t need to wait on UNOS to increase the organ supply from the top down. We can attack the problem from the ground up.
You can allocate your own organs. You can offer them first to registered organ donors who will do the same for you. That is the premise behind LifeSharers.
LifeSharers is a grass-roots organ donation network. Members agree to donate their organs when they die. Furthermore, they agree to offer their organs first to fellow members, if any member is a suitable match, before offering them to others. Membership is free and open to all at www.lifesharers.com. LifeSharers does not discriminate on the basis of race, color, religion, sex, sexual orientation, national origin, age, physical handicap, health status, marital status, or economic status. We welcome everyone, and we turn no one away. LifeSharers has over 2900 members, including members in all 50 states and the District of Columbia. Over 300 LifeSharers members are minor children enrolled by their parents. LifeSharers is organized as a 501(c)(3) non-profit organization and is staffed by unpaid volunteers. Our operations are funded by tax-deductible contributions.
The first question most people ask when they hear about LifeSharers is: “Is it legal?” The answer is yes. LifeSharers is a form of directed donation, which is legal in all 50 states, in the District of Columbia, and under federal law.
The law here in Illinois is typical. It allows donation of body parts to “any specified individual for therapy or transplantation needed by him or her.”
That is exactly what LifeSharers members do. We carefully follow the law. We donate each of our organs to a specified individual. Specifically, every LifeSharers member says: “for each part of my body donated, I designate as donee that LifeSharers member who is the most suitable match as defined by the criteria in general use at the time of my death.” That means, for example, that I would want my liver to go to the highest-ranked LifeSharers member on UNOS’ match run.
At the federal level, the Organ Procurement and Transplantation Network’s “Final Rule” governs organ allocation policy. It explicitly permits directed donation. The section that lays out how organs are to be allocated concludes by saying: “Nothing in this section shall prohibit the allocation of an organ to a recipient named by those authorized to make the donation.”
Again, LifeSharers carefully follows the law. When a member dies in circumstances that permit recovery of their organs, we provide their family with the names of individual LifeSharers members, if there are any, who need their organs. The member’s family then directs donation to these named individuals.
So, LifeSharers is legal. But can a grass-roots effort really reduce the organ shortage in America? Again, the answer is yes.
LifeSharers gives Americans an incentive to donate their organs when they die, and it is a powerful one. That incentive is preferred access to the organs of all our members. Simply put, joining LifeSharers gives you a better chance of getting an organ if you ever need one.
As the number of LifeSharers members grows, so does the incentive to join if you are not already a member. Consider, for example, what it will be like when LifeSharers has a million members. You’d be crazy not to join. If you didn’t, you’d give up preferred access to a pool of a million livers, two million kidneys, a million hearts, two million lungs, and more. That’s a powerful incentive to join LifeSharers. And that incentive can give a big boost to the supply of organs in America.
No LifeSharers member has yet died in circumstances that would have permitted recovery of their organs, but it’s just a matter of time. At our current membership level, there is about a 14% chance that organs will be recovered from one or more of our members in the next twelve months. When LifeSharers members start getting organs from other members, we expect a whole lot of publicity and a very large jump in our membership.
LifeSharers can’t increase the organ supply as fast as UNOS could if they implemented our approach. But I predict LifeSharers will put a big dent in the organ shortage before any effective legislative action is taken to reduce it.
So, LifeSharers is legal, and it will work. But is it fair? Again, the answer is yes.
I’ve already covered this issue from the demand side – that is, from the standpoint of the people who need organs. It’s also important to look at this issue from the supply side – that is, from the standpoint of the people who donate organs.
If you want to give your organs to other organ donors, is it ethical to override your wishes and give them to someone else? No, clearly it is not. But efforts are under way to do exactly that. Some bioethicists have suggested making it illegal for you to direct the donation of your organs to someone who doesn’t have a relationship with you that fits their criteria.
Imagine you wanted to give some groceries to a poor person. Then imagine some “experts” tried to force you to give them instead to the United Network for Grocery Sharing, so it could decide who gets them. I expect you would find that offensive. It is even more offensive when “experts” say they should decide who gets your organs when you die.
So, what does UNOS have to say about LifeSharers?
UNOS says “Our formal position is that UNOS does not endorse LifeSharers' approach. However, UNOS does not intervene in directed donation if it is allowed by state law.”
But UNOS has also said it doesn’t believe LifeSharers has made an “appropriate interpretation of the intent of directed donation” since “the only connection between donor and recipient is that they share membership” in LifeSharers. LifeSharers has made no interpretation of any sort. State and federal laws regarding directed donation are clear and they are plainly written, and we carefully follow them as written. UNOS is the one doing the interpreting, not LifeSharers.
LifeSharers deserves UNOS’ support, not its opposition. Will more Americans donate their organs if UNOS says they can’t donate them to other organ donors, or will fewer donate? The question answers itself.
Beyond just supporting LifeSharers, UNOS should implement the LifeSharers approach as its own. By doing so, UNOS would increase the supply of organs a whole lot faster than LifeSharers will.
Allocating organs first to organ donors can save thousands of lives a year. Nothing could be simpler, nothing could be fairer, and nothing in the law says we can’t make it happen.
Click here to subscribe to this blog
CHANGE ORGAN ALLOCATION TO INCREASE ORGAN SUPPLY
by
David J. Undis
If we change how we allocate organs we will get more organs to allocate.
We should allocate organs first to people who have agreed to donate their own organs when they die. This will cause many more people to register as organ donors, and save thousands of lives every year. Increasing the supply of organs this way is fair and simple, and it can be implemented without legislative action. It is already legal.
Would changing the organ allocation system really increase the supply of organs?
Imagine that the United Network for Organ Sharing made the following announcement tomorrow: “Beginning January 1 of next year, we will make no human organ available for transplantation into any person who is not a registered organ donor. The only exceptions will be directed donations and cases where no registered organ donor matches an organ that is available.”
Following the announcement of this policy change, millions and millions of people would register themselves and their children as organ donors. Wouldn’t you?
Registering as an organ donor would give you a better chance of getting an organ if you ever needed one. Deciding not to register would reduce your chance. When you consider that more than half of the people who need a transplant in the United States die before they get one , improving your odds could literally mean the difference between life and death. Agreeing to donate your organs after you die is a small price to pay for a better chance to get an organ if you ever need one to live. Almost everyone would decide to pay that price. The supply of organs would go way up, and thousands of lives would be saved every year.
Last year, there were about 7,000 deceased organ donors in the United States, and they provided the organs for about 20,000 transplants. But organs are transplanted from less than half of the eligible deceased donors. That means we could get up to 20,000 additional organs every year by changing the organ allocation system. To put that number in perspective, keep in mind that last year about 6,000 people were removed from the national transplant waiting list because they died and 1,500 more were removed because they became too sick to undergo surgery. So with an additional 20,000 organs per year, we could eliminate most of those deaths, reduce the size of the waiting list, and shorten waiting times for people still on the list.
We don’t need medical breakthroughs to achieve these results. All we need is behavior change. Only about 30% of Americans have signed up to donate their organs when they die. And Americans donate only about 50% of the organs that could be transplanted. They bury or cremate the rest. All we need to do is convince people to stop throwing away organs that could save their neighbors’ lives. Changing how we allocate organs will produce that behavior change.
The idea of giving registered organ donors an allocation preference is not new. It has been around for at least 15 years. Everyone who has suggested it has predicted that it would significantly increase the supply of organs. Some have said it would completely eliminate the waiting list. Even opponents of the idea generally concede it would increase supply. They say it isn’t fair.
So, is it fair to allocate organs first to registered organ donors?
Yes, in fact it makes the organ allocation system fairer.
What isn’t fair is giving an organ to someone who won’t donate their own, when there is a registered organ donor who needs it. It’s like awarding the lottery jackpot to someone who didn’t buy a ticket.
When you die, you can bury your organs, cremate them, or donate them and save lives. When those are your only choices, deciding not to donate is a spectacularly selfish thing to do. People who make that decision have no moral claim to an organ transplant.
Without organ donors there can be no organ transplants. Giving organs first to organ donors produces more organ donors, and that saves more lives.
The primary goal of the organ allocation system should be to save as many lives as possible. Other goals should be secondary.
It would be simple for UNOS to change its allocation system to put registered organ donors first. UNOS could simply add a field to its waiting list database. That field would show whether or not a potential organ recipient is a registered organ donor. Then when an organ becomes available, instead of offering it first to the highest-ranked person on its match run, UNOS could offer it first to the highest-ranked registered donor.
Putting organ donors first has an important advantage over most other suggestions for increasing the supply of organs. No legislative action is needed to implement it. UNOS already has the authority to give registered organ donors an allocation preference. The UNOS Ethics Committee acknowledged this fact in its 1993 white paper titled “Preferred Status For Organ Donors.” They wrote: “a trial could be implemented without requiring any alteration in existing legislation.”
In fact, UNOS already moves live donors up the waiting list if they later need a transplant. UNOS can, and should, do the same for people who agree to donate when they die.
Congress has never made tackling the organ shortage a priority, and there is no reason to think they will do so in the foreseeable future. Anyone who cares about the more than 87,000 people now on the national transplant waiting list should an approach to increasing the organ supply that does not depend on legislative action.
To review, changing the national organ allocation system could save thousands of lives a year and improve the system’s fairness. And UNOS has the power to implement this simple change. So, what is UNOS’ position on this? It hasn’t really taken one.
The closest it came to doing so was in 1993. But its white paper on the subject ultimately stopped short. It only recommended “wider societal discussion before considering concrete plans for implementation” of any system.
UNOS has not led the discussion it recommended. It has been largely silent on the subject since the publication of its white paper almost 12 years ago. That is unfortunate. Over 55,000 people on the UNOS waiting list have died over the last 10 years. Most of those deaths could have been prevented.
Fortunately, as individuals we don’t need to wait on UNOS to increase the organ supply from the top down. We can attack the problem from the ground up.
You can allocate your own organs. You can offer them first to registered organ donors who will do the same for you. That is the premise behind LifeSharers.
LifeSharers is a grass-roots organ donation network. Members agree to donate their organs when they die. Furthermore, they agree to offer their organs first to fellow members, if any member is a suitable match, before offering them to others. Membership is free and open to all at www.lifesharers.com. LifeSharers does not discriminate on the basis of race, color, religion, sex, sexual orientation, national origin, age, physical handicap, health status, marital status, or economic status. We welcome everyone, and we turn no one away. LifeSharers has over 2900 members, including members in all 50 states and the District of Columbia. Over 300 LifeSharers members are minor children enrolled by their parents. LifeSharers is organized as a 501(c)(3) non-profit organization and is staffed by unpaid volunteers. Our operations are funded by tax-deductible contributions.
The first question most people ask when they hear about LifeSharers is: “Is it legal?” The answer is yes. LifeSharers is a form of directed donation, which is legal in all 50 states, in the District of Columbia, and under federal law.
The law here in Illinois is typical. It allows donation of body parts to “any specified individual for therapy or transplantation needed by him or her.”
That is exactly what LifeSharers members do. We carefully follow the law. We donate each of our organs to a specified individual. Specifically, every LifeSharers member says: “for each part of my body donated, I designate as donee that LifeSharers member who is the most suitable match as defined by the criteria in general use at the time of my death.” That means, for example, that I would want my liver to go to the highest-ranked LifeSharers member on UNOS’ match run.
At the federal level, the Organ Procurement and Transplantation Network’s “Final Rule” governs organ allocation policy. It explicitly permits directed donation. The section that lays out how organs are to be allocated concludes by saying: “Nothing in this section shall prohibit the allocation of an organ to a recipient named by those authorized to make the donation.”
Again, LifeSharers carefully follows the law. When a member dies in circumstances that permit recovery of their organs, we provide their family with the names of individual LifeSharers members, if there are any, who need their organs. The member’s family then directs donation to these named individuals.
So, LifeSharers is legal. But can a grass-roots effort really reduce the organ shortage in America? Again, the answer is yes.
LifeSharers gives Americans an incentive to donate their organs when they die, and it is a powerful one. That incentive is preferred access to the organs of all our members. Simply put, joining LifeSharers gives you a better chance of getting an organ if you ever need one.
As the number of LifeSharers members grows, so does the incentive to join if you are not already a member. Consider, for example, what it will be like when LifeSharers has a million members. You’d be crazy not to join. If you didn’t, you’d give up preferred access to a pool of a million livers, two million kidneys, a million hearts, two million lungs, and more. That’s a powerful incentive to join LifeSharers. And that incentive can give a big boost to the supply of organs in America.
No LifeSharers member has yet died in circumstances that would have permitted recovery of their organs, but it’s just a matter of time. At our current membership level, there is about a 14% chance that organs will be recovered from one or more of our members in the next twelve months. When LifeSharers members start getting organs from other members, we expect a whole lot of publicity and a very large jump in our membership.
LifeSharers can’t increase the organ supply as fast as UNOS could if they implemented our approach. But I predict LifeSharers will put a big dent in the organ shortage before any effective legislative action is taken to reduce it.
So, LifeSharers is legal, and it will work. But is it fair? Again, the answer is yes.
I’ve already covered this issue from the demand side – that is, from the standpoint of the people who need organs. It’s also important to look at this issue from the supply side – that is, from the standpoint of the people who donate organs.
If you want to give your organs to other organ donors, is it ethical to override your wishes and give them to someone else? No, clearly it is not. But efforts are under way to do exactly that. Some bioethicists have suggested making it illegal for you to direct the donation of your organs to someone who doesn’t have a relationship with you that fits their criteria.
Imagine you wanted to give some groceries to a poor person. Then imagine some “experts” tried to force you to give them instead to the United Network for Grocery Sharing, so it could decide who gets them. I expect you would find that offensive. It is even more offensive when “experts” say they should decide who gets your organs when you die.
So, what does UNOS have to say about LifeSharers?
UNOS says “Our formal position is that UNOS does not endorse LifeSharers' approach. However, UNOS does not intervene in directed donation if it is allowed by state law.”
But UNOS has also said it doesn’t believe LifeSharers has made an “appropriate interpretation of the intent of directed donation” since “the only connection between donor and recipient is that they share membership” in LifeSharers. LifeSharers has made no interpretation of any sort. State and federal laws regarding directed donation are clear and they are plainly written, and we carefully follow them as written. UNOS is the one doing the interpreting, not LifeSharers.
LifeSharers deserves UNOS’ support, not its opposition. Will more Americans donate their organs if UNOS says they can’t donate them to other organ donors, or will fewer donate? The question answers itself.
Beyond just supporting LifeSharers, UNOS should implement the LifeSharers approach as its own. By doing so, UNOS would increase the supply of organs a whole lot faster than LifeSharers will.
Allocating organs first to organ donors can save thousands of lives a year. Nothing could be simpler, nothing could be fairer, and nothing in the law says we can’t make it happen.
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Saturday, March 05, 2005
Netherlands may give transplant priority to registered donors
In the Netherlands, Health Minister Johannes Hoogervorst wants to give priority on transplantation waiting lists to people who are registered as donors. It's nice to see that the idea that organs should go first to organ donors is catching on outside of the United States.
Here is an article from Expatic News:
Plan to give organ donors transplant priority
4 March 2005
AMSTERDAM — Health Minister Hoogervorst wants to give priority on transplantation waiting lists to people who are registered as donors, but MPs slammed the proposal on claims it will introduce discrimination in healthcare.
The Liberal VVD minister defended his proposal by pointing out that Muslims often refuse to donate organs based on religious beliefs. This is despite the fact they are willing to receive an organ if they are ill. "That creates a bad feeling," he said.
"If you say: 'I refuse to donate an organ because of my religion, but I don't want to receive one either', than I will respect it. But I won't respect a one-sided attitude of receiving and not giving. I find that problematic," Hoogervorst said.
After the parliamentary debate on organ donation, the minister said it is not just a few Muslims who refuse to give and whom are willing to receive an organ donation. It is instead a substantial group.
Hoogervorst said immigrants often have poorer health and will require a transplant more often than native Dutch. Due to the shortage of organ donors — especially kidneys — some 200 people die every year in the Netherlands, newspaper De Volkskrant reported.
The minister came to his conclusion in recent months during talks with medical specialists. At the request of Parliament, he will now draw up a detailed proposal.
Hoogervorst is considering a system in which registered donors receive extra points on organ transplant waiting lists, meaning they will get an organ sooner. The Cabinet has not yet determined its stance on the issue.
The Christian Democrat CDA and Labour PvdA led parliamentary opposition to the plan, but nearly all political parties expressed fears that Hoogervorst was introducing discrimination in healthcare. They are concerned that smokers and overweight people will also receive help later than other people.
But Hoogervorst rejected proposals to automatically register the entire population as potential donors, despite the fact that most of the opposition parties and government coalition partner Democrat D66 think that the system will yield more donors.
MPs will vote on automatic organ donation next week, but the proposal is not assured of a majority due to a difference in opinion between Labour PvdA and the Socialist SP party over the type of system to be introduced.
[Copyright Expatica News 2005]
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Here is an article from Expatic News:
Plan to give organ donors transplant priority
4 March 2005
AMSTERDAM — Health Minister Hoogervorst wants to give priority on transplantation waiting lists to people who are registered as donors, but MPs slammed the proposal on claims it will introduce discrimination in healthcare.
The Liberal VVD minister defended his proposal by pointing out that Muslims often refuse to donate organs based on religious beliefs. This is despite the fact they are willing to receive an organ if they are ill. "That creates a bad feeling," he said.
"If you say: 'I refuse to donate an organ because of my religion, but I don't want to receive one either', than I will respect it. But I won't respect a one-sided attitude of receiving and not giving. I find that problematic," Hoogervorst said.
After the parliamentary debate on organ donation, the minister said it is not just a few Muslims who refuse to give and whom are willing to receive an organ donation. It is instead a substantial group.
Hoogervorst said immigrants often have poorer health and will require a transplant more often than native Dutch. Due to the shortage of organ donors — especially kidneys — some 200 people die every year in the Netherlands, newspaper De Volkskrant reported.
The minister came to his conclusion in recent months during talks with medical specialists. At the request of Parliament, he will now draw up a detailed proposal.
Hoogervorst is considering a system in which registered donors receive extra points on organ transplant waiting lists, meaning they will get an organ sooner. The Cabinet has not yet determined its stance on the issue.
The Christian Democrat CDA and Labour PvdA led parliamentary opposition to the plan, but nearly all political parties expressed fears that Hoogervorst was introducing discrimination in healthcare. They are concerned that smokers and overweight people will also receive help later than other people.
But Hoogervorst rejected proposals to automatically register the entire population as potential donors, despite the fact that most of the opposition parties and government coalition partner Democrat D66 think that the system will yield more donors.
MPs will vote on automatic organ donation next week, but the proposal is not assured of a majority due to a difference in opinion between Labour PvdA and the Socialist SP party over the type of system to be introduced.
[Copyright Expatica News 2005]
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Friday, February 18, 2005
Transplant denied!
Patrick Garrity wants to donate one of his kidneys to his friend Alex Crionas. Because Mr. Crionas had created a web site to recruit a donor, the LifeLink transplant center in Tampa is refusing to test Mr. Garrity to see if he is a suitable match, according to a story in today's Tampa Tribune.
LifeLink's behavior is outrageous.
If you agree, please send an email to Dr. Victor Bowers, the Medical Director at LifeLink. His email address is Bowers@lifelinkfound.org. Please also send a letter to the editor of the Tampa Tribune. You can access their online form at
http://feedback.tbo.com/
There is nothing illegal about using the internet to try to improve your chances of getting an organ transplant.
Click here to subscribe to this blog
LifeLink's behavior is outrageous.
If you agree, please send an email to Dr. Victor Bowers, the Medical Director at LifeLink. His email address is Bowers@lifelinkfound.org. Please also send a letter to the editor of the Tampa Tribune. You can access their online form at
http://feedback.tbo.com/
There is nothing illegal about using the internet to try to improve your chances of getting an organ transplant.
Click here to subscribe to this blog
Thursday, February 03, 2005
Not all slopes are slippery
The Dallas Morning News published a story yesterday about LifeSharers.
The story quotes Pam Silvestri, a persistent critic of LifeSharers. She works for the Southwest Transplant Alliance, the organ procurement organization that services the Dallas area. She says LifeSharers is a "slippery slope" because if LifeSharers succeeds, "what's to stop dozens of lists from being created that allow special access based on other agendas ... race, religion, etc.?"
Some slopes aren't slippery, and this is one of them. Giving organs first to Hispanics doesn't produce more Hispanics, and giving organs first to Catholics doesn't produce more Catholics. But giving organs first to organ donors produces more organ donors, and that saves lives. That's the whole idea behind LifeSharers.
Besides, is it necessarily a bad thing for organ donors to give special access to members of their own race or religion? If it produces more organ donors and saves more lives, I say it's a good thing.
Ms. Silvestri also says LifeSharers won't work. She says it isn't practical for a LifeSharers member to offer their organs to a fellow member "because the organs might not match anyone in the LifeSharers group...and the small number of people in that group likely won't ever be in a position to donate. And even if they were, it is unlikely that the others in the group will be on the wait list for an organ."
Ms. Silvestri misses the point. It is possible that a member's organs won't be a good match for any other member, but the odds of that go down every time we get a new member. She is also misinformed. We already have 21 members "on the wait list for an organ" and statistically it's a virtual certainty that sooner or later a LifeSharers member will "be in a position to donate."
Ms. Silvestri and her colleagues at the OPOs around the country should be helping LifeSharers, not criticizing us. We recruit organ donors. That helps the OPOs. It also helps save lives. Isn't that what the OPOs are in business to do?
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The story quotes Pam Silvestri, a persistent critic of LifeSharers. She works for the Southwest Transplant Alliance, the organ procurement organization that services the Dallas area. She says LifeSharers is a "slippery slope" because if LifeSharers succeeds, "what's to stop dozens of lists from being created that allow special access based on other agendas ... race, religion, etc.?"
Some slopes aren't slippery, and this is one of them. Giving organs first to Hispanics doesn't produce more Hispanics, and giving organs first to Catholics doesn't produce more Catholics. But giving organs first to organ donors produces more organ donors, and that saves lives. That's the whole idea behind LifeSharers.
Besides, is it necessarily a bad thing for organ donors to give special access to members of their own race or religion? If it produces more organ donors and saves more lives, I say it's a good thing.
Ms. Silvestri also says LifeSharers won't work. She says it isn't practical for a LifeSharers member to offer their organs to a fellow member "because the organs might not match anyone in the LifeSharers group...and the small number of people in that group likely won't ever be in a position to donate. And even if they were, it is unlikely that the others in the group will be on the wait list for an organ."
Ms. Silvestri misses the point. It is possible that a member's organs won't be a good match for any other member, but the odds of that go down every time we get a new member. She is also misinformed. We already have 21 members "on the wait list for an organ" and statistically it's a virtual certainty that sooner or later a LifeSharers member will "be in a position to donate."
Ms. Silvestri and her colleagues at the OPOs around the country should be helping LifeSharers, not criticizing us. We recruit organ donors. That helps the OPOs. It also helps save lives. Isn't that what the OPOs are in business to do?
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Thursday, September 16, 2004
Avoiding "chaos" vs. saving lives
In an article in today's Houston Chronicle, medicial ethicist Arthur Caplan calls for Congress or the United Network for Organ Sharing to disallow directed organ donations except among family members.
Professor Caplan wants to disallow directed organ donations because if they take off they'll cause "chaos". But he also acknowledges that appeals for directed donation may ease the organ shortage.
Easing the organ shortage means saving lives. How can avoiding "chaos" be more important than saving lives? That's an argument only an expert can love.
LifeSharers uses directed donation to reduce the organ shortage. As practiced by LifeSharers, directed donation is legal under federal law and under the laws of all 50 states and the District of Columbia. If Dr. Caplan has his way, you won't be able to direct your organ donation gift to fellow organ donors, friends, or neighbors. That may avoid "chaos", but it will kill people.
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Professor Caplan wants to disallow directed organ donations because if they take off they'll cause "chaos". But he also acknowledges that appeals for directed donation may ease the organ shortage.
Easing the organ shortage means saving lives. How can avoiding "chaos" be more important than saving lives? That's an argument only an expert can love.
LifeSharers uses directed donation to reduce the organ shortage. As practiced by LifeSharers, directed donation is legal under federal law and under the laws of all 50 states and the District of Columbia. If Dr. Caplan has his way, you won't be able to direct your organ donation gift to fellow organ donors, friends, or neighbors. That may avoid "chaos", but it will kill people.
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Sunday, September 12, 2004
Researchers want to stop life-saving organ donations
Through a process called list-paired exchange, a person waiting for a kidney transplant gets a higher priority on the waiting list for an organ from a deceased donor when a relative makes a living donation to the waiting list. The living donor is not able to donate to his relative, usually because of blood type incompatibilities, so the willing donor gives his kidney to an unknown person on the waiting list.
List-paired exchanges save lives. Someone on the waiting gets a kidney. The donor's relative gets higher priority on the next matching kidney.
But some "researchers" don't think this is fair! Why? Because list-paired exchanges help people with certain blood types more than people with other blood types. Fewer people die overall, but more people with blood type O die. (For details go here.)
These "researchers" want to prohibit people from donating kidneys that they can't donate to relatives, if their relatives have blood type O. So if you wanted to help your brother get a kidney by giving one of your kidneys to a stranger, they would stop you if your brother's blood type is O.
This is arrogance on the grandest scale. Their proposal stop people from saving lives if their blood types weren't the right ones. And it would kill people in the name of fairness.
The goal of our organ donation system should be to save lives, not to spread deaths equally among groups. LifeSharers helps save lives by increasing the number of organ donors.
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List-paired exchanges save lives. Someone on the waiting gets a kidney. The donor's relative gets higher priority on the next matching kidney.
But some "researchers" don't think this is fair! Why? Because list-paired exchanges help people with certain blood types more than people with other blood types. Fewer people die overall, but more people with blood type O die. (For details go here.)
These "researchers" want to prohibit people from donating kidneys that they can't donate to relatives, if their relatives have blood type O. So if you wanted to help your brother get a kidney by giving one of your kidneys to a stranger, they would stop you if your brother's blood type is O.
This is arrogance on the grandest scale. Their proposal stop people from saving lives if their blood types weren't the right ones. And it would kill people in the name of fairness.
The goal of our organ donation system should be to save lives, not to spread deaths equally among groups. LifeSharers helps save lives by increasing the number of organ donors.
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Distrust of the organ donation system
According to an Associated Press report distrust of doctors is one of the reasons for low organ donation rates among blacks. The report cites statistics from the Organ Procurement and Transplantation Network, which say that blacks make up 27% of the waiting list for organ donations but only 12% of organ donors.
One way to increase trust in the organ donation system is to give donors more control over who gets their organs. LifeSharers does that, by helping people direct their organs to fellow organ donors.
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One way to increase trust in the organ donation system is to give donors more control over who gets their organs. LifeSharers does that, by helping people direct their organs to fellow organ donors.
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Sunday, September 05, 2004
Who deserves an organ transplant?
According to an article in today's Chicago Sun-Times, "From May 2002 to April 2004, 48 Illinois families refused to let organs be taken from the bodies of family members, even though their loved ones had registered as organ donors before they died. Each donor supplies an average of four organs, so these 48 vetoes meant nearly 200 fewer organs were available for transplants."
These vetoes also killed nearly 200 people.
Do the people who prevented their relatives' organs from being transplanted deserve to get an organ transplant if they ever need one? No, they don't. Not as long as there aren't enough organs to go around.
If one of those people got an organ that you or a loved one needed you'd be justifiably outraged.
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These vetoes also killed nearly 200 people.
Do the people who prevented their relatives' organs from being transplanted deserve to get an organ transplant if they ever need one? No, they don't. Not as long as there aren't enough organs to go around.
If one of those people got an organ that you or a loved one needed you'd be justifiably outraged.
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Monday, August 16, 2004
Reaction to Houston man's ad campaign for a liver
Following the success of Todd Krampitz's advertising campaign for a liver, the Associated Press quoted the United Network for Organ Sharing as saying that efforts like his "can create an uneven playing field for individuals on the national waiting list for organs." But the allocation system UNOS runs is already unfair. It gives about 70% of all organs to people who haven't agreed to donate their own organs when they die.
As long as people who refuse to sign a donor card can jump to the front of the waiting list if they need a transplant we'll always have an organ shortage. The solution to the organ shortage is simple -- if you don't agree to donate your organs when you die, then you go to the back of the waiting list if you ever need an organ to live.
The Houston Chronicle chimed in with an editorial. While acknowledging that directed donations are legal, it says Mr. Krampitz' solicitation of a donation "poses unsettling ethical questions."
Among the "unsettling ethical questions" not mentioned in the editorial are these: Is it ethical to forbid someone from using every legal means to get an organ that will save their life? Is it ethical to deny someone their legal right to donate an organ to a person of their choice?
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As long as people who refuse to sign a donor card can jump to the front of the waiting list if they need a transplant we'll always have an organ shortage. The solution to the organ shortage is simple -- if you don't agree to donate your organs when you die, then you go to the back of the waiting list if you ever need an organ to live.
The Houston Chronicle chimed in with an editorial. While acknowledging that directed donations are legal, it says Mr. Krampitz' solicitation of a donation "poses unsettling ethical questions."
Among the "unsettling ethical questions" not mentioned in the editorial are these: Is it ethical to forbid someone from using every legal means to get an organ that will save their life? Is it ethical to deny someone their legal right to donate an organ to a person of their choice?
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Friday, August 13, 2004
Houston man gets liver after billboard ad
Todd Krampitz of Houston, Texas, recently underwent successful transplant surgery after renting billboards to plead for the donation of a liver. He received a liver from a person from another state who had recently died. The deceased person's family, who had read about the advertising campaign, donated their loved one's liver specifically to Mr. Krampitz.
This is an example of directed donation as practiced by LifeSharers. It proves that the LifeSharers form of directed donation is legal.
This story and this story from the Houston Chronicle provide more information.
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This is an example of directed donation as practiced by LifeSharers. It proves that the LifeSharers form of directed donation is legal.
This story and this story from the Houston Chronicle provide more information.
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Sunday, June 13, 2004
Tax deductions for live organ donors
In January, Wisconsin became the first state to offer a tax deduction to live organ donors. The Wisconsin law lets live organ donors deduct up to $10,000 of transplant-related out-of-pocket expenses from their state income taxes. Legislatures is several other states, including Georgia, Minnesota, New York, and South Carolina, are considering similar legislation.
Rewarding organ donors is a good thing to do. It causes more people to become donors, and that saves lives.
But if government is going to reward organ donation, it would be better off rewarding people to donate their organs when they die. Live organ donors face serious health risks, but there's no health risk to an organ donor who is already dead.
An excellent way to reward people for agreeing to donate their organs when they die is to move them up the waiting list if they ever need an organ to live. That's what LifeSharers does.
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Rewarding organ donors is a good thing to do. It causes more people to become donors, and that saves lives.
But if government is going to reward organ donation, it would be better off rewarding people to donate their organs when they die. Live organ donors face serious health risks, but there's no health risk to an organ donor who is already dead.
An excellent way to reward people for agreeing to donate their organs when they die is to move them up the waiting list if they ever need an organ to live. That's what LifeSharers does.
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Sunday, May 16, 2004
Putting Organ Donors First
(The following is the text of a speech, as prepared for delivery, at a Cato Institute policy forum titled "Remedying the Organ Shortage: The Ethics of Market Incentives" in Washington DC on May 13, 2004.)
PUTTING ORGAN DONORS FIRST
by
David J. Undis
There is a simple, effective, ethical, and already legal way to reduce the organ shortage in America and make the organ allocation system fairer in the process. You can donate your organs to people who will do the same for you. You can tell everyone: “If you don’t agree to donate your organs when you die, then you will go to the back of the transplant waiting list if you ever need one of my organs to live. When it’s time to decide who gets my organs, I am putting organ donors first.”
A grass-roots network of organ donors called LifeSharers is making this a reality one member at a time. LifeSharers is a 501(c)(3) non-profit organization staffed by unpaid volunteers. Members agree to donate their organs when they die. Furthermore, they agree to offer their organs first to fellow members, if any member is a suitable match, before offering them to others. Membership in LifeSharers is free and open to all at www.lifesharers.com. LifeSharers is two years old, and currently has about 2300 members in 49 states and the District of Columbia, including about 300 children enrolled by their parents.
IS IT LEGAL?
The first question most people ask when they hear about LifeSharers is: “Is it legal?” The answer is yes. LifeSharers is a form of directed donation, which is legal in all 50 states, in the District of Columbia, and under federal law.
Most states have enacted a form of the Uniform Anatomical Gift Act which permits donation to “a designated individual” for transplantation needed by that individual. That is exactly what LifeSharers members do. We donate each of our organs to a designated individual, using language carefully crafted to conform to the UAGA’s directed donation provision. Specifically, every LifeSharers member says: “for each part of my body donated, I designate as donee that LifeSharers member who is the most suitable match as defined by the criteria in general use at the time of my death.” That means, for example, that I want my liver to go to the highest-ranked LifeSharers member on UNOS’ match run.
In a handful of states, donation to “a designated individual” is not permitted. In those states, LifeSharers members give their organs to their fellow member’s surgeon or hospital, which is permitted.
At the federal level, the OPTN “Final Rule” governs organ allocation policy. It explicitly permits directed donation. The section that lays out how organs are to be allocated concludes by saying: “Nothing in this section shall prohibit the allocation of an organ to a recipient named by those authorized to make the donation.”
Again, LifeSharers carefully conforms to the law. When a LifeSharers member dies in circumstances that permit recovery of their organs, LifeSharers provides their family with the names of individual LifeSharers members, if there are any, who need their organs. The member’s family then directs donation to these named individuals.
WILL IT WORK?
So, LifeSharers is legal. Can it really reduce the organ shortage in America? Again, the answer is yes.
We don’t need medical breakthroughs to reduce the organ shortage. All we need is behavior change. Only about 30% of Americans have signed up to donate their organs when they die. And Americans donate only about half of the organs that could be transplanted. They bury or cremate the rest.
Dr. Thomas Peters, director of the Jacksonville Transplant Center in Florida, has estimated that if the consent rate from suitable post-mortem donors was raised to 85%, everyone currently on the transplant waiting list could get a transplant within three years and newly listed patients could get transplants much faster.
We can get there by giving Americans an incentive to donate their organs when they die. LifeSharers creates such an incentive, and it is a powerful one. That incentive is preferred access to the organs of all our members. Simply put, LifeSharers gives you a better chance of getting an organ if you ever need one. When you consider that more than half of the people who need an organ transplant in the United States die before they get one, the chance to move up the waiting list, even just a little, can literally mean the difference between life and death. Donating your organs after you die is a small price to pay for a better chance to get an organ if you ever need one to live.
As the number of LifeSharers members grows, so does the incentive to join if you are not already a member. Consider, for example, what it will be like when LifeSharers has a million members. You’d be crazy not to join. If you didn’t, you’d give up preferred access to a million livers, two million kidneys, a million hearts, two million lungs, and more. That’s a powerful incentive to join LifeSharers. And that incentive can put a big dent in the organ shortage in America.
IS IT ETHICAL?
So, LifeSharers is legal, and it will work. But is it ethical? Again, the answer is yes.
The ethical argument for putting organ donors first is clear. As long as there is a shortage, those who haven’t agreed to donate their organs when they die should not be at the front of the waiting list when it’s time to decide who is going to live. Putting organ donors first makes organ allocation fairer.
Professor David A. Peters agreed, in a 1989 paper in the Journal of Law and Health. He wrote: "...under conditions of scarcity...justice demands that those who have consented to be posthumous organ providers, i.e., those who have fulfilled the moral duty to consent, be given first priority access to the cadaver organ pool in the event of need.”
Some say organs should be given to those who need them most, even if they haven’t signed a donor card and even if they’ve refused to sign one. This idea ignores a simple fact. The only alternatives to donating your organs are to bury them or burn them, so failing to donate them is a spectacularly selfish act. It boggles the mind to suggest that anyone who would throw away an organ that could save someone else’s life deserves an organ just because they need one.
Professor Michael Booker put it this way: "The right to receive a donated organ should be tied to the duty to donate organs...It is wrong to consider organ donation to be an act of altruism to be engaged in at one’s whimsy but to consider organ transplantation to be an inalienable right...Individuals who are willing to donate organs should certainly receive priority in the allocation of organs, since they alone can be said to deserve available organs.”
Organ donation is perhaps the greatest gift anyone can give or receive. It is literally the gift of life. Why give that precious gift to someone who won’t do the same thing for others? Why reward someone who is too lazy, too selfish, or otherwise unwilling to share the greatest of gifts?
Imagine a heart is available for transplant. Imagine that two people are a good match for the heart: Mr. Donor, who has committed to donate his organs when he dies, and Mr. Keeper, who has not. Given that there is a shortage of organs, should we treat Mr. Donor and Mr. Keeper as if there is no ethically relevant difference between them? No. Mr. Donor should get that heart, even if Mr. Keeper is sicker or has been waiting longer. Giving the heart to Mr. Donor serves the cause of justice.
Perhaps more importantly, rewarding Mr. Donor’s decision to donate his organs encourages others to do the same. That saves lives. On the other hand, giving that heart to Mr. Keeper encourages others to delay signing donor cards or to refuse to sign them, and that lets more people on the transplant waiting list suffer and die.
There is another aspect to this issue that is important – what about the wishes of the donor? If a person wants to give his organs to people who have agreed to do the same for him, is it ethical to ignore or override his wishes and give his organs to someone else? No, it is unethical. It is also counterproductive, because it causes fewer people to donate their organs, and that causes more suffering and more death.
Imagine you wanted to give a bag of groceries to a homeless person. Then imagine an “expert” criticized your decision, saying that he should decide who gets the groceries, and that they should go to a different homeless person across town. How intrusive, and how bizarre! It’s just as intrusive, and just as bizarre, when experts tell you they should be the ones who decide who gets your organs when you die.
UNOS CONCERNS
So, what does UNOS have to say about LifeSharers? Well, UNOS has expressed appreciation for our interest in promoting organ donation, but has raised some concerns.
First, UNOS says LifeSharers “creates a class of ‘LifeSharers members’ for special consideration in organ allocation.”
LifeSharers does create a class for special consideration in organ allocation, and it’s about time somebody did. Organ donors deserve special treatment in organ allocation, but they haven’t been getting it.
As for LifeSharers members being a class, note that it is a class that anyone can join for free. LifeSharers does not discriminate on the basis of race, color, religion, sex, sexual orientation, national origin, age, physical handicap, health status, marital status, or economic status. We welcome everyone, and we exclude no one.
Next, UNOS says LifeSharers “undermines the current framework for organ allocation” which, they say, “is predicated on clinically-relevant considerations, not personal characteristics.” First, increasing the number of organs to be allocated does not undermine the allocation system, it enhances it. Second, non-clinical considerations already play a central role in organ allocation. Race, geography, and ability to pay are just some examples. So is status as a live donor. UNOS moves live donors up the waiting list if they ever need an organ. LifeSharers is just doing the same for people who agree to donate when they die.
But even if the current allocation system was based totally on clinical considerations, it wouldn’t be as good as a different system that saved more lives.
The third concern expressed by UNOS is that LifeSharers members would accept organs from any donor, while preferentially restricting their donation to members. This means, according to UNOS, that “LifeSharers creates an imbalance by creating an open system with regard to receiving an organ, but a closed system where donation is concerned.”
LifeSharers doesn’t create an imbalance, we correct one. About 70% of all transplant organs go to people who haven’t agreed to donate their own organs when they die. LifeSharers helps organ donors get their fair share of organs. By increasing the supply of organs, we also help non-donors in the process.
And LifeSharers is not a “closed system where donation is concerned.” It is exactly the opposite. Anyone can join, it only takes about two minutes, and it’s free. Sure, we’ll accept organs from any donor. We’d be crazy not to. And yes, we do donate our organs first to fellow members. That’s how we create the incentive to be a donor. That’s how we increase the supply of organs available even to non-members.
But consider the group that is closed and does create an imbalance. These are the LifeHoarders, the people who will accept organs but refuse to donate them. It is the imbalance created by LifeHoarders that needs correcting. That’s exactly what LifeSharers is doing.
LifeSharers deserves UNOS’ support, not its opposition. Will more Americans donate their organs if UNOS says they can’t donate them to other organ donors, or will fewer donate? The question answers itself.
UNOS SHOULD PUT ORGAN DONORS FIRST
Beyond just supporting LifeSharers, UNOS should implement the LifeSharers approach as its own. By doing so, UNOS would slash the organ shortage a whole lot faster than LifeSharers will.
A simple thought experiment shows this clearly. Imagine that UNOS made the following announcement tomorrow: “Beginning January 1 of next year, no human organ will be made available in the United States for transplantation into any person who is not registered as an organ donor. The only exceptions will be directed donations and cases where no registered organ donor can be found to match an organ that is available.”
This announcement, along with the publicity it would generate, would cause people to register as organ donors in droves.
Rupert Jarvis agrees. He suggested in a 1995 Journal of Medical Ethics paper that only those who identify themselves as willing donors be eligible to receive organs. He wrote: "It hardly seems fanciful to suggest that the vast majority of people would elect to join the scheme, since it is so clearly in their interests to do so, with the potential gain (life) being infinite and the potential loss (postmortem dissection which…they might well have to undergo anyway) being zero."
Professor Alex Tabarrok also agrees. He has suggested that UNOS enact a “no-give no-take” rule. Here’s what he says would happen: “if the only way to get an organ is to have previously signed an organ donor card, then many more people will sign their organ donor cards, and the shortage will be alleviated.”
It would be simple for UNOS to put organ donors first. UNOS could simply add a field to its waiting list database to show whether or not each potential organ recipient is a registered organ donor. Then when an organ becomes available, instead of offering it first to the highest-ranked person on its match run, UNOS could offer it first to the highest-ranked registered donor.
No Congressional action is needed for UNOS to put organ donors first. UNOS has the authority to change its organ allocation rules to give organ donors preferred access to organs. The UNOS Ethics Committee acknowledged this fact in its 1993 white paper on “Preferred Status For Organ Donors.” They wrote: “a trial could be implemented without requiring any alteration in existing legislation.”
In fact, as I’ve already noted, UNOS already moves live donors up the waiting list if they ever need an organ. UNOS can, and should, do the same for people who agree to donate when they die.
CONCLUSION
Putting organ donors first can save thousands of lives a year, and make organ allocation fairer in the process. Nothing could be simpler, nothing could be fairer, and nothing is stopping us from making it happen.
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PUTTING ORGAN DONORS FIRST
by
David J. Undis
There is a simple, effective, ethical, and already legal way to reduce the organ shortage in America and make the organ allocation system fairer in the process. You can donate your organs to people who will do the same for you. You can tell everyone: “If you don’t agree to donate your organs when you die, then you will go to the back of the transplant waiting list if you ever need one of my organs to live. When it’s time to decide who gets my organs, I am putting organ donors first.”
A grass-roots network of organ donors called LifeSharers is making this a reality one member at a time. LifeSharers is a 501(c)(3) non-profit organization staffed by unpaid volunteers. Members agree to donate their organs when they die. Furthermore, they agree to offer their organs first to fellow members, if any member is a suitable match, before offering them to others. Membership in LifeSharers is free and open to all at www.lifesharers.com. LifeSharers is two years old, and currently has about 2300 members in 49 states and the District of Columbia, including about 300 children enrolled by their parents.
IS IT LEGAL?
The first question most people ask when they hear about LifeSharers is: “Is it legal?” The answer is yes. LifeSharers is a form of directed donation, which is legal in all 50 states, in the District of Columbia, and under federal law.
Most states have enacted a form of the Uniform Anatomical Gift Act which permits donation to “a designated individual” for transplantation needed by that individual. That is exactly what LifeSharers members do. We donate each of our organs to a designated individual, using language carefully crafted to conform to the UAGA’s directed donation provision. Specifically, every LifeSharers member says: “for each part of my body donated, I designate as donee that LifeSharers member who is the most suitable match as defined by the criteria in general use at the time of my death.” That means, for example, that I want my liver to go to the highest-ranked LifeSharers member on UNOS’ match run.
In a handful of states, donation to “a designated individual” is not permitted. In those states, LifeSharers members give their organs to their fellow member’s surgeon or hospital, which is permitted.
At the federal level, the OPTN “Final Rule” governs organ allocation policy. It explicitly permits directed donation. The section that lays out how organs are to be allocated concludes by saying: “Nothing in this section shall prohibit the allocation of an organ to a recipient named by those authorized to make the donation.”
Again, LifeSharers carefully conforms to the law. When a LifeSharers member dies in circumstances that permit recovery of their organs, LifeSharers provides their family with the names of individual LifeSharers members, if there are any, who need their organs. The member’s family then directs donation to these named individuals.
WILL IT WORK?
So, LifeSharers is legal. Can it really reduce the organ shortage in America? Again, the answer is yes.
We don’t need medical breakthroughs to reduce the organ shortage. All we need is behavior change. Only about 30% of Americans have signed up to donate their organs when they die. And Americans donate only about half of the organs that could be transplanted. They bury or cremate the rest.
Dr. Thomas Peters, director of the Jacksonville Transplant Center in Florida, has estimated that if the consent rate from suitable post-mortem donors was raised to 85%, everyone currently on the transplant waiting list could get a transplant within three years and newly listed patients could get transplants much faster.
We can get there by giving Americans an incentive to donate their organs when they die. LifeSharers creates such an incentive, and it is a powerful one. That incentive is preferred access to the organs of all our members. Simply put, LifeSharers gives you a better chance of getting an organ if you ever need one. When you consider that more than half of the people who need an organ transplant in the United States die before they get one, the chance to move up the waiting list, even just a little, can literally mean the difference between life and death. Donating your organs after you die is a small price to pay for a better chance to get an organ if you ever need one to live.
As the number of LifeSharers members grows, so does the incentive to join if you are not already a member. Consider, for example, what it will be like when LifeSharers has a million members. You’d be crazy not to join. If you didn’t, you’d give up preferred access to a million livers, two million kidneys, a million hearts, two million lungs, and more. That’s a powerful incentive to join LifeSharers. And that incentive can put a big dent in the organ shortage in America.
IS IT ETHICAL?
So, LifeSharers is legal, and it will work. But is it ethical? Again, the answer is yes.
The ethical argument for putting organ donors first is clear. As long as there is a shortage, those who haven’t agreed to donate their organs when they die should not be at the front of the waiting list when it’s time to decide who is going to live. Putting organ donors first makes organ allocation fairer.
Professor David A. Peters agreed, in a 1989 paper in the Journal of Law and Health. He wrote: "...under conditions of scarcity...justice demands that those who have consented to be posthumous organ providers, i.e., those who have fulfilled the moral duty to consent, be given first priority access to the cadaver organ pool in the event of need.”
Some say organs should be given to those who need them most, even if they haven’t signed a donor card and even if they’ve refused to sign one. This idea ignores a simple fact. The only alternatives to donating your organs are to bury them or burn them, so failing to donate them is a spectacularly selfish act. It boggles the mind to suggest that anyone who would throw away an organ that could save someone else’s life deserves an organ just because they need one.
Professor Michael Booker put it this way: "The right to receive a donated organ should be tied to the duty to donate organs...It is wrong to consider organ donation to be an act of altruism to be engaged in at one’s whimsy but to consider organ transplantation to be an inalienable right...Individuals who are willing to donate organs should certainly receive priority in the allocation of organs, since they alone can be said to deserve available organs.”
Organ donation is perhaps the greatest gift anyone can give or receive. It is literally the gift of life. Why give that precious gift to someone who won’t do the same thing for others? Why reward someone who is too lazy, too selfish, or otherwise unwilling to share the greatest of gifts?
Imagine a heart is available for transplant. Imagine that two people are a good match for the heart: Mr. Donor, who has committed to donate his organs when he dies, and Mr. Keeper, who has not. Given that there is a shortage of organs, should we treat Mr. Donor and Mr. Keeper as if there is no ethically relevant difference between them? No. Mr. Donor should get that heart, even if Mr. Keeper is sicker or has been waiting longer. Giving the heart to Mr. Donor serves the cause of justice.
Perhaps more importantly, rewarding Mr. Donor’s decision to donate his organs encourages others to do the same. That saves lives. On the other hand, giving that heart to Mr. Keeper encourages others to delay signing donor cards or to refuse to sign them, and that lets more people on the transplant waiting list suffer and die.
There is another aspect to this issue that is important – what about the wishes of the donor? If a person wants to give his organs to people who have agreed to do the same for him, is it ethical to ignore or override his wishes and give his organs to someone else? No, it is unethical. It is also counterproductive, because it causes fewer people to donate their organs, and that causes more suffering and more death.
Imagine you wanted to give a bag of groceries to a homeless person. Then imagine an “expert” criticized your decision, saying that he should decide who gets the groceries, and that they should go to a different homeless person across town. How intrusive, and how bizarre! It’s just as intrusive, and just as bizarre, when experts tell you they should be the ones who decide who gets your organs when you die.
UNOS CONCERNS
So, what does UNOS have to say about LifeSharers? Well, UNOS has expressed appreciation for our interest in promoting organ donation, but has raised some concerns.
First, UNOS says LifeSharers “creates a class of ‘LifeSharers members’ for special consideration in organ allocation.”
LifeSharers does create a class for special consideration in organ allocation, and it’s about time somebody did. Organ donors deserve special treatment in organ allocation, but they haven’t been getting it.
As for LifeSharers members being a class, note that it is a class that anyone can join for free. LifeSharers does not discriminate on the basis of race, color, religion, sex, sexual orientation, national origin, age, physical handicap, health status, marital status, or economic status. We welcome everyone, and we exclude no one.
Next, UNOS says LifeSharers “undermines the current framework for organ allocation” which, they say, “is predicated on clinically-relevant considerations, not personal characteristics.” First, increasing the number of organs to be allocated does not undermine the allocation system, it enhances it. Second, non-clinical considerations already play a central role in organ allocation. Race, geography, and ability to pay are just some examples. So is status as a live donor. UNOS moves live donors up the waiting list if they ever need an organ. LifeSharers is just doing the same for people who agree to donate when they die.
But even if the current allocation system was based totally on clinical considerations, it wouldn’t be as good as a different system that saved more lives.
The third concern expressed by UNOS is that LifeSharers members would accept organs from any donor, while preferentially restricting their donation to members. This means, according to UNOS, that “LifeSharers creates an imbalance by creating an open system with regard to receiving an organ, but a closed system where donation is concerned.”
LifeSharers doesn’t create an imbalance, we correct one. About 70% of all transplant organs go to people who haven’t agreed to donate their own organs when they die. LifeSharers helps organ donors get their fair share of organs. By increasing the supply of organs, we also help non-donors in the process.
And LifeSharers is not a “closed system where donation is concerned.” It is exactly the opposite. Anyone can join, it only takes about two minutes, and it’s free. Sure, we’ll accept organs from any donor. We’d be crazy not to. And yes, we do donate our organs first to fellow members. That’s how we create the incentive to be a donor. That’s how we increase the supply of organs available even to non-members.
But consider the group that is closed and does create an imbalance. These are the LifeHoarders, the people who will accept organs but refuse to donate them. It is the imbalance created by LifeHoarders that needs correcting. That’s exactly what LifeSharers is doing.
LifeSharers deserves UNOS’ support, not its opposition. Will more Americans donate their organs if UNOS says they can’t donate them to other organ donors, or will fewer donate? The question answers itself.
UNOS SHOULD PUT ORGAN DONORS FIRST
Beyond just supporting LifeSharers, UNOS should implement the LifeSharers approach as its own. By doing so, UNOS would slash the organ shortage a whole lot faster than LifeSharers will.
A simple thought experiment shows this clearly. Imagine that UNOS made the following announcement tomorrow: “Beginning January 1 of next year, no human organ will be made available in the United States for transplantation into any person who is not registered as an organ donor. The only exceptions will be directed donations and cases where no registered organ donor can be found to match an organ that is available.”
This announcement, along with the publicity it would generate, would cause people to register as organ donors in droves.
Rupert Jarvis agrees. He suggested in a 1995 Journal of Medical Ethics paper that only those who identify themselves as willing donors be eligible to receive organs. He wrote: "It hardly seems fanciful to suggest that the vast majority of people would elect to join the scheme, since it is so clearly in their interests to do so, with the potential gain (life) being infinite and the potential loss (postmortem dissection which…they might well have to undergo anyway) being zero."
Professor Alex Tabarrok also agrees. He has suggested that UNOS enact a “no-give no-take” rule. Here’s what he says would happen: “if the only way to get an organ is to have previously signed an organ donor card, then many more people will sign their organ donor cards, and the shortage will be alleviated.”
It would be simple for UNOS to put organ donors first. UNOS could simply add a field to its waiting list database to show whether or not each potential organ recipient is a registered organ donor. Then when an organ becomes available, instead of offering it first to the highest-ranked person on its match run, UNOS could offer it first to the highest-ranked registered donor.
No Congressional action is needed for UNOS to put organ donors first. UNOS has the authority to change its organ allocation rules to give organ donors preferred access to organs. The UNOS Ethics Committee acknowledged this fact in its 1993 white paper on “Preferred Status For Organ Donors.” They wrote: “a trial could be implemented without requiring any alteration in existing legislation.”
In fact, as I’ve already noted, UNOS already moves live donors up the waiting list if they ever need an organ. UNOS can, and should, do the same for people who agree to donate when they die.
CONCLUSION
Putting organ donors first can save thousands of lives a year, and make organ allocation fairer in the process. Nothing could be simpler, nothing could be fairer, and nothing is stopping us from making it happen.
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Wednesday, April 07, 2004
Life-saving incentives
LifeSharers advisor Alexander Tabarrok published a paper titled "Live-Saving Incentives: Consequences, costs and solutions to the organ shortage" in the Library of Economics and Liberty. It's an excellent explanation of how incentives can reduce or eliminate the organ shortage in the United States.
Here are some excerpts:
"Our current organ procurement system relies solely on altruism to motivate donation. Altruism is a fine thing but it is in short supply. Repeated exhortations from the government and organizations interested in organ procurement, including campaigns featuring Michael Jordan as a spokesperson, have not greatly increased organ donation in the past and are unlikely to do so in the future. We may hope for love but should plan on self-interest."
"Resources owned in common tend to be under-supplied and over-utilized. No one wants to pay to restock a lake, for example, when the benefits of restocking flow to everyone regardless of whether or not they helped to pay for the restocking. As a result, open fisheries are almost always driven to depletion. The solution is to close the fishery to those who do not help to restock the lake....Everyone wants to fish in the organ pool but no one has a direct incentive to “restock the lake” by signing their organ donor card. As with fishing lakes, a solution to this problem is to close the organ pool to non-donors."
"Consider a no-give, no-take policy for organs. Under this system in order to receive an organ you must have previously signed your organ donor card. Under no-give, no-take, signing your organ donor card can be thought of as joining a club, the club of people who have agreed to share their organs. Or one can think of signing the organ donor card as the price that you pay for organ insurance....Something like no-give, no-take is currently being implemented privately. LifeSharers.com is an 'organ club.' Anyone can join. Members agree that if their organs should become available they will go first to a fellow LifeSharers member. (If everyone joins LifeSharers, it becomes equivalent to no-give, no-take.) Although reciprocity proposals like no-give, no-take have moral advantages it is important to remember that their primary purpose is to increase the incentive to donate and therefore to increase the total number of organs available."
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Here are some excerpts:
"Our current organ procurement system relies solely on altruism to motivate donation. Altruism is a fine thing but it is in short supply. Repeated exhortations from the government and organizations interested in organ procurement, including campaigns featuring Michael Jordan as a spokesperson, have not greatly increased organ donation in the past and are unlikely to do so in the future. We may hope for love but should plan on self-interest."
"Resources owned in common tend to be under-supplied and over-utilized. No one wants to pay to restock a lake, for example, when the benefits of restocking flow to everyone regardless of whether or not they helped to pay for the restocking. As a result, open fisheries are almost always driven to depletion. The solution is to close the fishery to those who do not help to restock the lake....Everyone wants to fish in the organ pool but no one has a direct incentive to “restock the lake” by signing their organ donor card. As with fishing lakes, a solution to this problem is to close the organ pool to non-donors."
"Consider a no-give, no-take policy for organs. Under this system in order to receive an organ you must have previously signed your organ donor card. Under no-give, no-take, signing your organ donor card can be thought of as joining a club, the club of people who have agreed to share their organs. Or one can think of signing the organ donor card as the price that you pay for organ insurance....Something like no-give, no-take is currently being implemented privately. LifeSharers.com is an 'organ club.' Anyone can join. Members agree that if their organs should become available they will go first to a fellow LifeSharers member. (If everyone joins LifeSharers, it becomes equivalent to no-give, no-take.) Although reciprocity proposals like no-give, no-take have moral advantages it is important to remember that their primary purpose is to increase the incentive to donate and therefore to increase the total number of organs available."
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Thursday, March 25, 2004
Misconceptions about LifeSharers
Today's Richmond Times-Dispatch contains a nice article about LifeSharers. The article repeats some misconceptions about LifeSharers:
(1) Bioethicist Laura Siminoff of Case Western Reserve University says LifeSharers members are "double-dippers" who opt out of the national organ donation system. That's just not true. LifeSharers members direct that each of their organs be offered first to the fellow member on the national waiting list who is the best match for each organ. Non-members can have our organs if no member is a suitable match. The real "double-dippers" are the people who haven't agreed to donate their own organs when they die. They get 70% of the organs transplanted in the United States. (Ms. Siminoff's statement that LifeSharers members "expect the government to pick up the tab for procuring, testing, matching and transplanting organs when they need them" is puzzling. These costs are typically picked up by transplant recipients and their insurance companies, not by the federal government.)
(2) Mark Fox of UNOS says LifeSharers undermines the existing allocation system by creating an open system in which its members accept organs from anyone while preferentially restricting donation to its members. But the real "underminers" are people who will accept an organ transplant but refuse to donate their own organs. In Dr. Fox's language, they create an open system in which they accept organs from anyone while refusing to donate at all. UNOS would be better served criticizing these people. LifeSharers doesn't undermine the system. LifeSharers improves the system by increasing the number of donors and by making the system more fair.
(3) "Federal officials" say an organ procurement organization would violate federal regulations if it honored a LifeSharers member's request to offer their organs first to fellow members. This is not true. Federal law recognizes and respects a person's right to direct their organ donation to individuals of their choosing. So does state law in all 50 states.
(4) Ms. Siminoff says LifeSharers would have to sign up just about everybody in the country to make a difference. We've already made a difference by recruiting over 2,100 organ donors. At our current membership level, there is a 10% chance that one of more of our members will actually donate their organs in the next 12 months. She also says that once LifeSharers did sign up just about everybody in the country "you wouldn't need it." Finally she's correct about something. If just about everybody in the country signed an organ donor card then we wouldn't need LifeSharers.
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(1) Bioethicist Laura Siminoff of Case Western Reserve University says LifeSharers members are "double-dippers" who opt out of the national organ donation system. That's just not true. LifeSharers members direct that each of their organs be offered first to the fellow member on the national waiting list who is the best match for each organ. Non-members can have our organs if no member is a suitable match. The real "double-dippers" are the people who haven't agreed to donate their own organs when they die. They get 70% of the organs transplanted in the United States. (Ms. Siminoff's statement that LifeSharers members "expect the government to pick up the tab for procuring, testing, matching and transplanting organs when they need them" is puzzling. These costs are typically picked up by transplant recipients and their insurance companies, not by the federal government.)
(2) Mark Fox of UNOS says LifeSharers undermines the existing allocation system by creating an open system in which its members accept organs from anyone while preferentially restricting donation to its members. But the real "underminers" are people who will accept an organ transplant but refuse to donate their own organs. In Dr. Fox's language, they create an open system in which they accept organs from anyone while refusing to donate at all. UNOS would be better served criticizing these people. LifeSharers doesn't undermine the system. LifeSharers improves the system by increasing the number of donors and by making the system more fair.
(3) "Federal officials" say an organ procurement organization would violate federal regulations if it honored a LifeSharers member's request to offer their organs first to fellow members. This is not true. Federal law recognizes and respects a person's right to direct their organ donation to individuals of their choosing. So does state law in all 50 states.
(4) Ms. Siminoff says LifeSharers would have to sign up just about everybody in the country to make a difference. We've already made a difference by recruiting over 2,100 organ donors. At our current membership level, there is a 10% chance that one of more of our members will actually donate their organs in the next 12 months. She also says that once LifeSharers did sign up just about everybody in the country "you wouldn't need it." Finally she's correct about something. If just about everybody in the country signed an organ donor card then we wouldn't need LifeSharers.
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Thursday, March 04, 2004
Rewarding organ donors
A story in the March 2nd edition of The Patriot Ledger describes how the Living Donor Exchange Program works: "Chris Mazzeo will donate his left kidney on [Bill] McDonnell's behalf next week. Because Mazzeo's kidney is incompatible with McDonnell, the organ will go to a stranger, but his donation will move McDonnell to the top of the list of people waiting for a kidney from a cadaver."
The Living Donor Exchange Program is a great idea. It moves people up the transplant waiting list in exchange for the donation of an organ.
LifeSharers does the same basic thing. We reward people for their promise to donate in the future, while the Living Donor Exchange Program rewards relatives and friends of living donors.
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The Living Donor Exchange Program is a great idea. It moves people up the transplant waiting list in exchange for the donation of an organ.
LifeSharers does the same basic thing. We reward people for their promise to donate in the future, while the Living Donor Exchange Program rewards relatives and friends of living donors.
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Monday, February 23, 2004
Organ donor fairness in New Zealand
Stephen Franks, a Member of the New Zealand Parliament, has proposed that organ donation be encouraged in New Zealand by a simple law change. In a press release, Mr. Franks said, "Non-donors should not be denied a transplant, but should go to the bottom of the list. Those who are prepared to contribute should get priority."
Mr. Franks' proposal is based on the same ideas that are behind LifeSharers.
"People are free to not donate, but they should then lose their moral claim to receive organs - it's fairness: people shouldn't expect others to do for them what they will not do for others," Mr Franks said.
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Mr. Franks' proposal is based on the same ideas that are behind LifeSharers.
"People are free to not donate, but they should then lose their moral claim to receive organs - it's fairness: people shouldn't expect others to do for them what they will not do for others," Mr Franks said.
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Thursday, February 12, 2004
Charity and fairness
Organ donation is perhaps the greatest gift a person can give. It is literally the gift of life.
LifeSharers members give their organs first to others who have promised to do the same. Critics say that’s unfair. What a weird thing to say.
When you give food to a hungry person, nobody criticizes you for not giving it to a different person who is even hungrier. When you give money to your church, nobody criticizes you for not giving it to the United Way.
So how does it make sense to criticize someone for deciding who gets his organs?
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LifeSharers members give their organs first to others who have promised to do the same. Critics say that’s unfair. What a weird thing to say.
When you give food to a hungry person, nobody criticizes you for not giving it to a different person who is even hungrier. When you give money to your church, nobody criticizes you for not giving it to the United Way.
So how does it make sense to criticize someone for deciding who gets his organs?
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Friday, January 30, 2004
UNOS supports donors rights
At its June 2003 board meeting, the UNOS board meeting adopted the following resolution:
"WHEREAS the consensus among transplant professionals, donor families, and transplant candidates and recipients attending the UNOS Research to Practice Consensus Conference regarding organ donation was that, to the extent medically feasible, the wishes of those who give the gift of life through organ donation by executing a valid anatomical gift instrument
indicating their wish to become an organ donor upon death should be honored,
IT IS THEREFORE RESOLVED that the OPTN/UNOS Board of Directors endorses the principle that the wishes of organ donors should be honored upon death to the extent medically feasible and that state and federal laws should reflect such principle. To that end, the OPTN/UNOS Board of Directors strongly encourages the adoption and full implementation in all states of the provisions of the Uniform Anatomical Gift Act as amended pertaining to honoring the donor's wishes and the adoption of legislation expressly prohibiting valid organ donations from being reversed after the donor's death or declined for any reason other than medical suitability."
Since UNOS supports a person's right to become a donor, it should also state that it supports a donor's right to donate his/her organs first to another donor. UNOS hasn't done that yet, but their support isn't needed. Your organs are yours, and the law says you can decide who gets them. UNOS has stated it won't block a LifeSharers member's wish to give his/her organs to another member.
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"WHEREAS the consensus among transplant professionals, donor families, and transplant candidates and recipients attending the UNOS Research to Practice Consensus Conference regarding organ donation was that, to the extent medically feasible, the wishes of those who give the gift of life through organ donation by executing a valid anatomical gift instrument
indicating their wish to become an organ donor upon death should be honored,
IT IS THEREFORE RESOLVED that the OPTN/UNOS Board of Directors endorses the principle that the wishes of organ donors should be honored upon death to the extent medically feasible and that state and federal laws should reflect such principle. To that end, the OPTN/UNOS Board of Directors strongly encourages the adoption and full implementation in all states of the provisions of the Uniform Anatomical Gift Act as amended pertaining to honoring the donor's wishes and the adoption of legislation expressly prohibiting valid organ donations from being reversed after the donor's death or declined for any reason other than medical suitability."
Since UNOS supports a person's right to become a donor, it should also state that it supports a donor's right to donate his/her organs first to another donor. UNOS hasn't done that yet, but their support isn't needed. Your organs are yours, and the law says you can decide who gets them. UNOS has stated it won't block a LifeSharers member's wish to give his/her organs to another member.
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