"Donated Cadaveric Organs Should Be Allocated First to Registered Organ Donors"
by David J. Undis, Executive Director of LifeSharers

(as prepared for presentation at "The Ethics of Organ Transplantation" conference at The University of St. Thomas in Houston, Texas, on March 27, 2009)

Over 100,000 people are now waiting for organ transplants in the United States. More than half of them will die waiting.

Every year in the United States, over 8,000 people die because they couldn’t get an organ for a transplant operation. And every year in the United States, about 20,000 organs that could have been transplanted are buried or cremated instead. We don’t have an organ shortage. We have an organ donor shortage. Just about everyone would accept a transplant if they needed one to live, but only about 50 percent of adult Americans have agreed to donate their organs when they die.

There is a simple way to increase the number of organ donors – allocate donated organs first to registered organ donors.

If the United Network for Organ Sharing, which runs the national organ allocation system, put organ donors first, then the number of organ donors would go way up. Thousands of lives would be saved every year.

UNOS should make this announcement: “Beginning on January 1 of next year, UNOS will maintain two waiting lists for transplant recipients. The ‘A’ list will be for people who have been registered organ donors for at least six months, and for children less than six months old who were registered as organ donors by their parents at birth. The ‘B’ list will be for everyone else. All organs will be allocated first to people on the ‘A’ list. Organs will be made available to people on the ‘B’ list only if they’re not needed by anyone on the ‘A’ list.”

In response to this announcement, just about everyone in the United States who was not already a registered organ donor would register. Very few people would refuse to donate their organs when they died if they knew it would reduce their chances of getting a transplant should they ever need one to live. The supply of transplantable organs would go way up. Thousands of additional transplants would be performed every year. The transplant waiting list would stop growing, and it would start shrinking. Waiting times for people still on the list would stop going up, and start going down.

Allocating organs first to registered organ donors will also make the organ allocation system fairer. It’s just not fair to give an organ to a non-donor if there is a registered organ donor who needs it. It’s like giving the lottery jackpot to someone who didn’t buy a ticket.

No one has the right to an organ transplant. Organ transplants are possible only because other people donate their organs. Refusing to sign up to be a donor but expecting to get a transplant if you need one is like refusing to buy a homeowners insurance policy but expecting the insurance company to rebuild your house if it burns down.

In 2006, the Institute of Medicine published a report titled “Organ Donation – Opportunities for Action”. The report examined several ideas on how to increase the supply of donated organs, and made recommendations about each of them. One of the ideas it looked at was giving registered organ donors preferred access to donated organs. Here is the report’s recommendation: “Individuals who have recorded a willingness to donate their organs after their death should not be given preferential status as potential recipients of organs.”

What was the reasoning behind this recommendation? (1) It might not work, and (2) it wouldn’t be fair even if it did.

Let’s look at the first issue: Will allocating donated organs first to registered organ donors increase the supply of organs?

The Institute of Medicine report said: “There is no direct evidence that giving registered donors preferred status would in fact increase the rate of organ donation.”

UNOS has never given registered donors preferred status, so there is of course little “direct evidence.” But there is plenty of indirect evidence. In fact, there is every reason to believe putting organ donors first would increase the number of organ donors.

Few people have any good reasons not to donate. In fact, according to public opinion polls, about 90% of Americans support organ donation. But only about 50% have registered as organ donors. Under our current system, there is no cost to not registering, so it’s easy to put it off. Giving registered donors preferred access to organs will motivate people to getting around to doing something they’ve been meaning to do anyway.

Over 50% of the people on the national transplant waiting list will die before they get a transplant. If you’re unlucky enough to be on the list, you want to be at the front, not at the back. Few people would put themselves on the ‘B’ list by refusing to donate their organs after they’re dead and they can’t use them any more. If UNOS had two waiting lists today, refusing to register as an organ donor would put you behind at least 80 million people who might need transplants some day. It would also put you behind the 100,000 people who already need transplants, assuming those people would be smart enough to register as organ donors if they’re not already registered.

If you don’t believe putting organ donors first would increase the number of organ donors, consider what would happen if UNOS put organ donors last. Imagine UNOS did the exact opposite of what I’m proposing. Imagine UNOS offered all organs first to non-donors, with registered organ donors only getting the leftovers. Does anyone doubt that the number of registered organ donors would plummet?

There is some direct evidence that giving organs first to donors will actually increase the number of donors. It is provided by LifeSharers, a national organ donation network. LifeSharers members use directed donation to offer their organs first to fellow members. So if you join LifeSharers, you get preferred access to the organs of other members.

The Institute of Medicine report concluded that LifeSharers was “far too small to provide useful data.” For what it’s worth, LifeSharers is now almost four times as big as it was then, having signed up 12,500 members. You can take this information with a grain of salt if you like, but polls of LifeSharers members reveal two things.

First, about 20% of LifeSharers members were not already registered organ donors when they joined. LifeSharers has increased the number of registered organ donors.

Second, about 65% of LifeSharers members say that one of the reasons they joined was to increase their chance of getting a transplant should they ever need one. This is more evidence that preferred access can increase organ donation rates.

Let’s look at the second issue raised by the Institute of Medicine report: Is it fair to allocate donated organs first to registered donors?

The Institute of Medicine wrote that it does not favor giving registered donors preferred access to donated organs “largely because of insuperable practical problems” in implementing such a system fairly.

The report mentioned three such problems: the information problem, the adverse selection problem, and the unfair allocation problem.

It describes the information problem as follows: “Without extensive education and a nationwide donor registry that is easily accessible to all citizens, a preferred-status system runs the risk of unfairly excluding people who have not been educated about donation or who lack easy access to donor registration.”

This argument makes a mountain out of mole hill. Few people have not been educated about donation. Even fewer lack easy access to donor registration.

As for education, recall that 90% of adult Americans support organ donation. This proves that the overwhelming majority of Americans have been educated about donation.

Furthermore, if UNOS announced it was maintaining two waiting lists and allocating all organs first to registered donors, it would be really big news. Every TV station, every radio station, and every newspaper in the country would spread the news. So would all the organizations in this country that are already working to increase organ donation awareness. They would all tell people they need to register or get put on the ‘B’ list. They would all tell people how to register.

As for people lacking easy access to donor registration, it’s never been easier to register. Forty-eight states now have online donor registries. In just about every state, including the two states (New Hampshire and Wisconsin) that don’t have online donor registries, you can sign up to be an organ donor on your driver’s license or state-issued ID card. Some states also let you register as an organ donor when you register to vote. The Institute of Medicine report didn’t explain why a national donor registry would be needed. It didn’t explain why our system of state registries isn’t good enough.

The second problem mentioned by the Institute of Medicine report is the adverse selection problem, which it described as follows: “people who are most at risk for needing an organ will be disproportionately likely to sign up to be a donor.”

Adverse selection is addressed in my proposal by the waiting period – you have to be a registered donor for six months before you get on the ‘A’ list. The prudent thing to do is to register before you know you need an organ.

But even if there is some adverse selection, so what? Many of the people who are at most risk of needing an organ are suitable donors themselves. You can have a bad heart but have a good liver, good lungs, and good kidneys.

The third problem mentioned by the Institute of Medicine report is what it calls the unfair allocation problem: “embrac[ing] the idea that some patients merit a transplant (rather than need a transplant) more than others because they are willing to contribute their organs,…would effect a significant change in the existing criteria for organ allocation. If society is going to step onto that slippery slope, it is not clear why a willingness to contribute organs should be paramount.”

The Institute of Medicine report sets up a straw man with this argument. Giving organs first to organ donors has nothing to do with “merit”. Everyone “merits” an organ transplant. You can support giving organs first to donors without embracing the idea that donors “merit” transplants more than non-donors. Preferred access is a good idea because it will increase the number of donors and save lives.

Let’s also be very clear about the role “need” plays in organ allocation. Under UNOS rules, organs are not allocated to the people who need them most. If an organ becomes available today here in Houston, it will be offered first to someone here in Houston, even if there is someone in Dallas, and someone in Austin, and someone in San Antonio, or someone anywhere else in the country who needs it more. Under UNOS rules, age also often trumps need. So does time spent waiting. If allocating organs based on factors others than need is a “slippery slope,” we’ve been on that slope for a long time.

The IOM report continues its fairness argument with three examples. Let’s look at them.

Example 1: “Some of the people most in need of an organ will be people who have never been medically eligible to donate, so their willingness to donate would be an empty gesture. What should be done in such cases?”

Answer: No one’s willingness to donate is an empty gesture, because no one knows when they sign up to donate if their organs will be transplantable when they die. The fact that someone hasn’t been medically eligible to donate in the past doesn’t mean he won’t be medically eligible to donate in the future. Surgeons are transplanting lots of organs today that they would have rejected five years ago. Five years from now, they’ll be transplanting lots of organs they would reject today. So everyone who is willing to donate and registers as a donor goes on the ‘A’ list.

Example 2: “What…about people who have a strong emotional or religious concern about donating their own organs? Should religious objection to donation preclude equal access to organs when they are needed?”

Answer: I’m not aware of any religion that forbids donating organs but permits receiving them, so this doesn’t appear to be much of a problem. In any event, if you’re willing to receive an organ but are unwilling to donate, you shouldn’t get a free pass by saying your unwillingness to donate is based on “emotional” or “religious” reasons. You go on the ‘B’ list.

Example 3: “A person who has inadequate access to health care and fears that organ donor status might increase his or her chances of receiving suboptimal treatment in a life-threatening health situation may be reluctant to be an organ donor, even though he or she would like to receive an organ if he or she needed one.”

Answer: These people would let you receive suboptimal treatment in a life-threatening situation so they could get transplants, but they’re unwilling to return the favor. They go on the ‘B’ list.

When the Institute of Medicine report says giving organs first to donors would create a “fairness problem”, that’s exactly backwards. Giving organs first to organ donors fixes a fairness problem, it doesn’t create one. It’s not fair to give an organ to a non-donor if a donor needs it.

To summarize, let’s put the objections raised by the Institute of Medicine report in perspective. The report says giving organs first to donors might not increase donation rates. Is that a reason not to try it? No. Not when the number of people who need transplants keeps going up. Not when the number of people dying waiting for transplants keep going up. And not when there’s good reason to think it will work.

The report says giving organs first to organ donors would create an information problem, an adverse selection problem, and an unfair allocation problem. Assume these three problems are all real and significant. Are they real and significant enough to reject a policy that will save lives?

The information problem: Should we give up the chance to save lives because people who are educated about organ donation are more likely to be saved than those who aren’t? No. We should save lives.

The adverse selection problem: Should we give up the chance to save lives because people most at risk of needing transplants are more likely to be saved than those less at risk? No. We should save lives.

The unfair allocation problem: Should we give up the chance to save lives because registered organ donors are more likely to be saved than those who haven’t registered? No. We should save lives.

Fairness is a good thing, but fairness is a secondary issue. The primary goal of our organ allocation system should be to save as many lives as possible. Allocating organs first to registered organ donors will save more lives.