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)

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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