Organ Shortage

October 12, 2005 Issues & Ideas speech

(The following is a speech delivered by David J. Undis at the Mackinac Center for Public Policy’s Oct. 12 Issues & Ideas Luncheon in Lansing, Mich.)

Our subject today is organ donation – not a particularly pleasant subject. Thinking about organ donation forces us to think about our own death and to think about having parts of our bodies cut out after we’ve died.

If you think that’s unpleasant, think of what it would be like if you needed a transplant. Because there is a large organ shortage, you would probably die before you got one and while you waited you would suffer as your bad organ continued to deteriorate. Or worse, think of your daughter, or your mother, or your sister needing a transplant, and dying after years of suffering and waiting. To make it even more unpleasant, think of what it would be like knowing that while she suffered and died Americans threw away thousands of organs that could have saved her life.

So as unpleasant as it is to think about organ donation, please consider your alternatives carefully. You can donate your organs, you can bury them, or you can cremate them. Those are your only choices. If you agree to donate your organs after you die you may save several lives. If you don’t, several people may suffer and die. One of those people could be the daughter of the person sitting next to you.

If you are not a registered organ donor, please sign up today.

If you are already a registered organ donor, thank you. Please also join LifeSharers. Membership is free and open to all at http://www.lifesharers.com. If you join, you’ll increase your chances of getting a transplant if you ever need one. I’ll provide more information about LifeSharers later.

Sadly, many, many Americans choose not to donate their organs. Only about 30 percent of Americans are registered organ donors. Fully half of all transplantable organs from potential deceased donors are buried or cremated. That’s 20,000 organs every year. Each of those organs could have saved someone’s life. Instead, we have a shortage of transplantable human organs in the United States that kills thousands of people every year and gets larger every day.

The national statistics show the extent of the problem. Over 89,000 Americans are now on the national transplant waiting list. Over 43,000 people joined the list last year. About 6,500 people left the waiting list last year because they had died waiting. Another 1,500 people left the list last year because while they were waiting they became too sick to undergo transplant surgery. If any of those people are still alive, they won’t be much longer, so that’s 8,000 people a year dying from the organ shortage.

The situation here in Michigan mirrors the national picture. There are 2,799 people in Michigan on the national transplant waiting list, and 1,430 people were added to the waiting list last year. Last year 187 people in Michigan died waiting for a transplant and another 55 became too sick to transplant.

Here is the grim bottom line: over 50 percent of the people who need an organ transplant in the United States will die before they get one.

The organ shortage is so bad that it has led to widespread use of organs from live donors. Last year 7,000 Americans had a kidney, part of one of their lungs, or part of their liver cut from their bodies to save the life of a family member, a neighbor, or even a stranger. I marvel at the extraordinary generosity of these people. And I think of how few of these people would have to go under the knife if we weren’t throwing away so many organs from dead people.

The organ shortage is not just a tragedy. It is an unnecessary tragedy.

How did we arrive at this point? How did this senseless tragedy reach such proportions? Pure and simple, it’s the result of bad public policy.

In 1984, the National Organ Transplant Act became law. It made it illegal to buy and sell human organs in the United States. Michigan’s Public Health Code does the same thing. So do the laws of every other state. Economically speaking, this is the same has having price controls on human organs with the maximum price set at zero. The only available organs are those that are donated.

Imagine if the federal government and all 50 states made it illegal to buy or sell food, so that the only available food was donated food. Does anybody think we wouldn’t have massive food shortages?

Public policy created the organ shortage by making donated organs the only available source. But even in a world that relies exclusively on donated organs, the organ shortage is bigger than it has to be. Why? Public policy is again the culprit. Public policy undermines organ donation, and public policy discourages organ donation.

How does public policy undermine organ donation? Well, when you register as an organ donor you agree to make an anatomical gift that is effective upon your death. Most states, including Michigan, have what are called "first person consent" laws. First person consent means that consent for an anatomical gift can only be revoked by the person who made the gift. You are the only person who can revoke your anatomical gift. No one, including your family, can revoke your gift after your death. Transplant personnel are not required to get the consent of your family to take your organs if you agreed to donate them.

But no state enforces first person consent laws. Transplant personnel always seek family consent, even when they are not legally required to do so. And they always follow the family’s wishes, even if the family wants to override a legally binding anatomical gift. And public officials don’t do anything about it.

Failure to enforce first person consent laws undermines organ donation. It increases the number of wasted transplantable organs. It increases the number of people who die waiting for transplants.

How does public policy discourage organ donation? Organ allocation policy is the source of this problem.

Most organs in the United States are allocated by the United Network for Organ Sharing. UNOS is a private organization that operates the nation transplant allocation system under a contract with the federal government. UNOS also maintains the national transplant waiting list. Organs are allocated by UNOS based on several factors. Generally speaking, UNOS is more likely to give you an organ that becomes available if you are a good medical match for it, if you have been on the waiting list a long time, if you are very sick, and if you live close to the donor.

One factor UNOS does not consider is whether or not you are a registered organ donor. You can get an organ transplant in American without agreeing to donate your own organs when you die. You can even refuse in writing to donate your organs and still get a transplant. This discourages organ donation. Let’s face it – if you had to be a registered organ donor to be eligible for an organ transplant, then just about everybody would register and the supply of organs would go way up.

Imagine that UNOS made the following announcement tomorrow: "Because of the severe shortage of transplantable organs, beginning January 1, 2006, we will not make any organ available to any person who is not a registered organ donor. The only exceptions will be organs not needed by any registered organ donor, because we don’t want any organs to go to waste." Millions of people would register as organ donors. Millions of people would register their children. Wouldn’t you?

The potential for saving lives with this approach is very significant, because in a very real sense the organ shortage is really an organ donor shortage. Again, only about half of all transplantable organs are donated. For example, last year in Michigan there were 277 deceased organ donors, but 287 families refused to donate the organs of recently deceased loved ones. About three organs are recovered from the average deceased donor, so those 287 families threw away over 800 transplantable organs. Countrywide, 20,000 people received transplants from deceased donors last year, but another 20,000 transplantable organs were thrown away. If we allocated organs first to registered organ donors, fewer organs would be wasted and more lives would be saved.

So, public policy created the organ shortage, public policy undermines organ donation, and public policy discourages organ donation. What are the prospects for a public policy solution to the organ shortage?

The shortage could be eliminated if the ban on buying and selling organs was removed. But that is just not going to happen. There is fierce opposition to the idea. Opponents of this idea paint pictures of poor people across America being forced to sell their kidneys to rich people in order to put food on the table for their families. The whole subject is much too controversial for most legislators.

Incremental steps toward a free market in human organs could put big dents in the organ shortage. For example, you could keep the ban on live organ sales and just legalize payment for organs from the deceased. This would reduce fears of exploiting the poor. After all, as Professor Lloyd Cohen of George Mason University Law School wrote, when you are dead, you are no longer rich or poor – you are just dead. You could keep the ban on private organ purchases, let only the government buy organs, and have the government put those organs into the national organ allocation system. This would reduce fears that rich people would buy all the organs. But even these incremental steps face very strong opposition. The American Medical Association, the American Society of Transplant Surgeons, and UNOS have proposed pilot programs to test, on a limited basis, if financial incentives will work to increase organ donation rates. This idea has gone nowhere in Congress. I see very little possibility that legislators will support even a small step toward a free market in human organs in the foreseeable future.

The organ shortage could be reduced by enforcing existing first person consent laws. There is very little appetite for doing this. Nobody wants to deal with a grieving family that doesn’t want to let their loved one’s organs be transplanted. And nobody has to deal with the people who died because those organs were thrown away.

Changing organ allocation policy would reduce the organ shortage. Here the prospects are brighter. No legislative action is needed to change organ allocation policy so that registered organ donors are the first to receive transplants. National organ allocation policy is set by UNOS, as I mentioned earlier. UNOS has the power to modify its allocation rules to give organs first to registered organ donors. It hasn’t yet chosen to do so.

But UNOS doesn’t have a monopoly on organ allocation policy. Your organs belong to you, not to UNOS, and you don’t have to let UNOS decide who gets them. Federal law, and the law of every state, says that you can decide that for yourself. You can give your organs to other registered organ donors. You can do that by joining LifeSharers.

LifeSharers is a national network of registered organ donors. We are a 501(c)(3) non-profit organization staffed by unpaid volunteers. Our mission is to save lives by increasing the supply of organs in the United States. We give people a good reason to donate their organs when they die.

Anyone in the United States can join LifeSharers, and membership is free. Parents can enroll their minor children. When you join, you agree to donate your organs when you die. You also agree to offer your organs first to other LifeSharers members, if any member is a suitable match, before making them available to the general public. This is accomplished through a process called direction donation, which is legal under federal law, under Michigan law, and under the laws of every other state.

As a LifeSharers member, you get preferred access to the organs of all other members. So what we’re offering is a very good trade. You agree to donate your organs after you’re dead and can’t use them anymore. In exchange, you get moved up the transplant waiting list if you ever need an organ. That could literally save your life.

LifeSharers helps increase the supply of organs by creating a pool of organs that are available first to registered organ donors. The existence of this pool creates an incentive for people who are not registered organ donors to register and join the network. And this incentive becomes stronger as our membership grows.

For example, if you decide today to join LifeSharers you will get preferred access to the organs of our 3,261 members. And every time somebody else joins LifeSharers your chances of getting an organ if you ever need one will go up. If you are not a member, every time someone joins LifeSharers your chances of getting an organ go down. Consider what it will be like when we have a million members. You will have preferred access to a whole lot of organs. That could mean the difference between life and death someday. Remember that more than half of the people who need an organ transplant in the United States will die before they get one.

LifeSharers is still relatively small. No member has yet died in circumstances that would have permitted recovery of their organs, so no member has yet received an organ from another member. But we are going to have a big impact on the supply of organs in the United States, and we will eventually help save thousands of lives every year. We are also making the organ allocation system in the United States fairer in the process, by giving organs first to registered organ donors.

Without organ donors there are no organ transplants. But about 70 percent of the organs transplanted in the United States go to people who have not agreed to donate their own organs when they die. That is just not fair.

If you are a registered organ donor who needs an organ, and a non-donor across town needs the same organ you do, UNOS will give it to him if he is a little sicker than you are or if he’s been on the waiting list a little longer. This is just not right. Organs should be given first to registered organ donors. People who aren’t willing to share their organs should go to the back of the transplant waiting list.

I hope that public policy makers will soon make reducing the organ shortage in America a priority. After all, it is public policy that created the shortage in the first place. But I would be very surprised if that happened.

But we don’t need public policy changes to reduce the organ shortage. We don’t need money. It costs more to keep people alive while they wait for a transplant than it does for transplant surgery, so as the number of transplants goes up our total health care costs go down. We don’t need medical breakthroughs to fix the problem. We don’t need scientific advancements. All we need is behavior change. We just have to stop throwing away organs that could save our neighbors’ lives.

As we speak, Americans are dying at the rate of one every hour while waiting for organ transplants. I hope you will do what you can to help save their lives.

Joining LifeSharers is a great place to start. By joining LifeSharers, you’ll help reduce the organ shortage in America, you’ll make the organ allocation system fairer, and you’ll increase your chances of getting an organ if you ever need one.

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David J. Undis is founder and executive director of LifeSharers in Nashville, Tennessee. Permission to reprint in whole or in part is hereby granted, provided that the author and the Mackinac Center for Public Policy are properly cited.