Increase Organ Supply by Changing Organ Allocation
by
David J. Undis, Executive Director of LifeSharers

(as prepared for presentation at Albany Medical College “Ethics Grand Rounds” 3/16/2006)

 

Last year, there were about 7,600 deceased organ donors in the United States.  These generous people provided the organs for about 21,200 transplants. [1]  But organs are transplanted from only about half of the eligible deceased donors. [2]  That means Americans buried or cremated about 20,000 transplantable organs last year.  To put that number in perspective, last year about 5,800 people were removed from the national transplant waiting list because they died and 1,800 more were removed because while they were waiting they became too sick to undergo transplant surgery. [3]  We could eliminate most waiting list deaths, reduce the size of the waiting list, and shorten waiting times for people still on the list if we stopped throwing away so many transplantable organs.

Years and years of efforts to increase organ donation rates in the United States have largely failed.  There were only about 2,000 more deceased organ donors in 2005 then there were in 1995.  But there were over 50,000 more people waiting for transplants at the end of 2005 than there were at the end of 1995.  Over 44,000 people joined the waiting list last year.  There are over 91,000 people on the waiting list right now, and more than half of them will die before they get a transplant [4].  Three years ago, Dr. Robert Metzger, then President-Elect of UNOS, called the waiting list “the waiting to die list.”[5]

The organ shortage continues to grow larger every year.  Expanded use of “extended criteria” organs from deceased donors hasn’t reduced the shortage.  Neither has the large increase in the number of live donors.  Improvements in procurement methods, the spread of state donor registries, and the enactment of laws in 43 states making organ donation registration legally binding haven’t stopped the organ shortage from increasing either.  The best that can be said about these efforts is that they may have helped slow the increase in the shortage.

Several other strategies for reducing the organ shortage have been suggested.  These include the use of financial incentives, the enactment of presumed consent laws, and even “organ conscription” or mandatory donation.  These strategies share a common weakness.  None of them are currently legal.  None of them can be enacted without legislative action, and they all face broad-based opposition making such action very unlikely.

Fortunately, there is an already-legal way to reduce the organ shortage.  It has been largely overlooked but it would be extremely effective.  We can increase the supply of organs by changing how organs are allocated.

We should introduce reciprocity into organ allocation.  We should allocate organs first to people who have agreed to donate their own organs when they die.  This will create an incentive for more people to register as organ donors, and that incentive will save thousands of lives every year.

Imagine that the United Network for Organ Sharing, which operates the national organ allocation system, made the following announcement today: “Beginning January 1 of next year, we will make no human organ available for transplantation into any person who has not been a registered organ donor for at least six months.  The only exceptions will be 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 as organ donors.  They would register their children as well.  Anyone who registered as an organ donor would increase their chances of getting an organ if they ever needed one.  Anyone who didn’t register would reduce their chances.  The decision to register could literally mean the difference between life and death.

Agreeing to donate your organs after you die is a very small price to pay for a better chance to get a transplant organ if you ever need one to live.  Almost everyone would decide to pay that price.  The supply of organs would increase significantly, and thousands of lives would be saved every year.  Even people who did not agree to donate their organs would be helped.

No medical breakthroughs are needed to save these lives.  All we need is behavior change.  All we need to do is convince people to stop throwing away organs that could save their neighbors’ lives.  Allocating organs first to registered organ donors would produce that behavior change.

No legislative action is needed to implement this change.  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.”[6]

In fact, UNOS already moves live donors up the waiting list if they later need a transplant.[7]  UNOS can, and should, do the same for people who agree to donate when they die.

It would be easy for UNOS to change its allocation system to put registered organ donors first.  UNOS could add a single field to its waiting list database.  That field would show whether or not a potential organ recipient is a registered organ donor.  Then whenever 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.

Under UNOS’ allocation rules, most organs are given to non-donors.  About 60% of all organs go to people who haven’t agreed to donate their own organs when they die.[8]  This highlights another reason to give organs first to registered organ donors – it makes the organ allocation system more equitable.

It’s just not fair to give organs to people who won’t haven’t agreed to donate their own, when there are registered organ donors who need them.  It’s like awarding the Powerball jackpot to someone who didn’t buy a ticket.

Giving organs first to registered organ donors is a simple matter of justice.  Justice demands that people who are the same should be treated the same.  But the person who hasn’t agreed to donate his organs when he dies is not the same as the person who has.  There is an ethically relevant difference between the two.

Imagine a heart is available for transplant.  Imagine that two people are a good match for that 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, and given that Mr. Keeper’s only alternatives to donating his organs are to bury them or cremate them, should we treat Mr. Donor and Mr. Keeper as if there is no ethically relevant difference between them?  No, Mr. Keeper would throw away his organs instead of saving the lives of his neighbors – and those are his only available choices!  It is mind-boggling to suggest that Mr. Keeper’s claim to an organ has the same ethical basis as Mr. Donor’s claim.  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.

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 put off registering as organ donors or to refuse to register, and that lets more people on the transplant waiting list suffer and die.  As long as we allocate organs to people who won’t reciprocate, we will always have a shortage.

Giving organs first to organ donors will produce more organ donors, and that will save more lives.  That should be the primary goal of the organ allocation system – to save as many lives as possible.  UNOS should change its allocation rules to pursue that goal.

UNOS has the power to implement this simple change, but they have not yet chosen to do so.  In 1993 the UNOS Ethics Committee recommended “wider societal discussion before considering concrete plans for implementation”[9] of any system for giving preferred status to organ donors.  UNOS has not led that discussion.  It has been largely silent on the subject.  That is unfortunate.  About 65,000 people on the UNOS waiting list have died since its white paper recommended delay.[10]  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.  We can allocate our own organs.  We can offer them first to registered organ donors who will do the same for us.  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.org.

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.  LifeSharers welcomes everyone, and turns no one away.

LifeSharers has over 4,000 members, including members in all 50 states and the District of Columbia.  About 10% of LifeSharers members are minor children enrolled by their parents.  LifeSharers is organized as a 501(c)(3) non-profit organization, it is staffed by unpaid volunteers, and it relies on tax-deductible charitable contributions to fund its operations.[11]

LifeSharers members offer their organs first to other registered organ donors using a form of directed donation that is legal in every state and under federal law.

The law here in New York is typical.  It says organ donors can donate body parts “to any specific donee, for therapy or transplantation needed by him.”[12]

That is exactly what LifeSharers members do.  They carefully follow the law.  They donate each of their organs to a specific donee.  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.”[13]  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 also explicitly permits directed donation.  The section that lays out how organ allocation policies are to be developed 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.”[14]

Again, LifeSharers carefully follows the law.  When a 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.[15]

No LifeSharers member has yet died in circumstances that would have permitted recovery of their organs.  At its current membership level, there is about a 15-20% chance that organs will be recovered from one or more LifeSharers members in the next twelve months.  When members start getting organs from other members, LifeSharers expects a tremendous amount of publicity and a very large jump in membership.

But LifeSharers can’t increase the organ supply as fast as UNOS could if it adopted the LifeSharers approach as its own.  By introducing reciprocity into organ allocation – by allocating organs first to registered organ donors – UNOS could save thousands of lives every year.  If UNOS acted today it would start saving those lives tomorrow.  That’s exactly what UNOS should do.