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Escaping the System: The
Current System of Organ Allocation and the Attempts to Survive It (Prepared for delivery to Albany Medical College’s “Health, Care and Society” class, March 15, 2006.)
When Glenn McGee asked me a few months ago if I’d be willing to come to Albany to give a speech on March 15 I was happy to say yes. I found out later that the title for this session had already been written and distributed – “Gaming the System: The Current System of Organ Allocation and the Attempts to Circumvent It.” I’m still happy to be here, but I would have chosen a slightly different title. What does it mean to “game” a system? It means to cheat. It means not playing by the rules you agreed to play by. There is certainly some of that going on in the world of organ allocation. For example, there have been cases where doctors exaggerated the severity of their patients’ illnesses to move them up the transplant waiting list. Also, in a recently reported case, a hospital took money from a patient over and above its normal transplant fee, and transplanted into him an organ meant for another patient. They then reported that the organ was transplanted into that other patient, and his name was removed from the national transplant waiting list without his knowledge. He later died waiting for a transplant, never knowing that he had no chance of getting one. Cheating is clearly unethical. I’m against cheating, and I’m sure you all are too. That’s all I’ll have to say today about out-and-out cheating. What does it mean to “circumvent” a system? It means to go around it. There’s a whole lot of that going on in the world of organ allocation. That’s what I’ll be talking about today. Unlike cheating, circumventing a system is not clearly unethical. If a system is immoral, it is not unethical to circumvent it. If a system is optional and you never agreed to play by its rules, circumventing that system is not unethical. If a system is not exclusive – if there are legal and legitimate alternatives to the system – it is not unethical to circumvent it. The title of today’s session implies that attempting to circumvent the organ allocation system is cheating, and that it is wrong. I do not agree with that implication. In fact, I am one of the people who have been accused of trying to game the organ allocation system. Today I’m going to describe the organ allocation system and some of the attempts to circumvent it. But if I had been given a chance to write the title for today’s session, it would have been: “Escaping the System: The Current System of Organ Allocation and the Attempts to Survive It”. People aren’t trying to game the system. They’re trying to escape it. People aren’t attempting to circumvent the system. They’re attempting to survive it. Before looking at the organ allocation system itself, let’s look at why people are trying to escape it. The reason is simple – if they don’t escape the system, the system will probably kill them. In June of 2003, Dr. Robert Metzger testified before Congress during hearings titled “Assessing Initiatives to Increase Organ Donations”. At the time, Dr. Metzger was President-Elect of the United Network for Organ Sharing. UNOS is a private organization that operates the national organ allocation system under a contract with the federal government. Here’s part of what Dr. Metzger had to say: “Over 81,000 patients are on the wait-list for transplantation in the United States today and more than 5,000 will die this year without receiving a transplant. More startling is that almost 60% of those on the list today will die without receiving a transplant.” That was 33 months ago. The transplant waiting list has grown since then.
This chart shows the growth in the waiting list over the last 20 months. Today, the list contains over 91,000 names, not 81,000. So if Dr. Metzger was testifying today, he wouldn’t be saying that almost 60% of those on the list today will die without receiving a transplant. He’d be saying that over 60% will die. Two weeks before his testimony, in an interview with a Florida newspaper, Dr. Metzger called the transplant waiting list “the waiting to die list.” Is it any wonder that people who need transplants are “circumventing” the organ allocation system? If your mother, your sister, or your daughter needed a transplant, would you suggest that she submit to a system that will probably let her die? I doubt it. No, I think you would help her find ways to save her life. Before we look at some of the ways to do that, let’s examine the organ allocation system. I am not a doctor. It is not my intent here to go into technical medical matters here. Rather, I want to explain the legal foundation and the goals of the system. State law covers the mechanics of organ donation – how to make an anatomical gift, how to revoke one, and things like that. But our organ allocation system has its roots in federal law, specifically in the National Organ Transplant Act of 1984. That law established the Organ Procurement and Transplantation Network. The OPTN is charged with maintaining a national list of individuals who need organs. It is also charged with maintaining a system for allocating available organs to individuals on that list. The National Organ Transplant Act also made it illegal to pay for organs to be used in transplant operations. In my opinion, this is the real source of the organ shortage. The government made it illegal to buy or sell organs, so that the only supply of organs is donated organs. If the government did the same thing with food and shoes, we’d have a whole lot of hungry bare-foot people. Under the National Organ Transplant Act, operation of the OPTN is contracted to a private entity. Since 1986, the United Network for Organ Sharing has held that contract and operated the OPTN. For purposes of today’s discussion, OPTN and UNOS are essentially interchangeable. The Secretary of the Department of Health and Human Services has authority over OPTN, and he wields a big stick. Under the Social Security Act of 1986, hospitals that have transplant programs are required to follow OPTN rules and regulations. If they don’t, their entire operations – not just their transplant operations – are disqualified from participating in Medicare and Medicaid. So hospitals don’t mess with OPTN rules. The OPTN issued a “Final Rule” in 1999. It lays out how organ allocation policies are to be developed. The purpose of the final rule is “to help achieve the most equitable and medically effective use of human organs that are donated in trust for transplantation.” Keep this in mind as we go along today: equity and medical effectiveness are the overriding goals to be achieved in developing organ allocation policies. It’s also important to keep in mind that OPTN allocation policies only apply to organs from deceased donors. They do not apply to organs from live donors. OPTN’s Board of Directors is charged with developing these policies. Under the Final Rule, about 50% of the members of the OPTN board must be transplant surgeons or transplant physicians, and at least 25% of the members must be transplant candidates, transplant recipients, organ donors, and family members. The board must also include representatives of organ procurement organizations, transplant hospitals, voluntary health associations, transplant coordinators, histocompatibility experts, nonphysician transplant professionals, and the general public. Let’s look at some of the requirements for developing policies for allocating organs from deceased donors. First, organ allocation policies shall be based on sound medical judgment. It’s hard to argue with that one. Second, allocation policies shall seek to achieve the best use of donated organs. That sounds good, too. Third, organ allocation policies should be different for different organs. That makes sense. Next, organ allocation policies shall be designed to achieve four different objectives: don’t waste organs, don’t perform futile transplants, promote patient access to transplants, and promote efficient organ placement. This is all good. Next, the organ allocation system is to be a national system, not a series of local or regional ones, unless that conflicts with the requirements we’ve already mentioned. Finally, organ allocation policies cannot prohibit directed donation, which means they can’t stop organ donors from donating to specific individuals of their choosing. Directed donation is also legal under the laws of all 50 states and the District of Columbia. This is a good time to point out that the organ allocation system in the United States is really two systems. The first system is the OPTN system I’ve just described. It applies to organs that are “donated in trust for transplantation.” When people talk about “the organ allocation system” this is the system they’re talking about. But there is a second system, the directed donation system. It applies to organs that are not donated “in trust” but are donated to specific individuals. As we shall see, this second system is playing an increasingly important role in allocating organs. So that’s how policies for allocating organs from deceased donors are to be developed. None of this seems controversial. Of course, the devil is in the details. We’re not going to go there, except to point out two things. First, there’s lots of room in these guidelines for interpretation and value judgments. For example, what exactly is “the most equitable use of donated organs”? What is “the most medically effective use” of donated organs”? What is “the best use of donated organs”? All of these terms are used in OPTN’s policy development guidelines. What is “sound medical judgment”? And what is a “futile transplant”? Reasonable people can, and do, disagree on all these questions. Second, because these guidelines have more than one goal, it’s almost impossible to avoid conflict. Recall the overriding goals: “the most equitable and medically effective use” of donated organs. Even if everyone agreed on what those two things mean, it’s by no means clear that what is most medically effective is most equitable, or that what is most equitable is most medically effective. Let’s turn now to some of the ways people use to escape the OPTN organ allocation system. Broadly speaking, the most common way of escaping the OPTN organ allocation system is through live organ donation.
This chart shows the growth of live organ donations compared to the growth of deceased organ donations. The red line shows the number of deceased organ donors by year from 1988 through 2005. The blue line shows the number of living donors. As you can see, there were about 4 times as many living donors last year as in 1988. During that same period, the number of deceased donors grew only about 3.5% per year. About half of all organ donors are now live donors. The overwhelming majority of live organ donors are kidney donors, and just about all of these donations are from family member to family member, or from friend to friend. For example, John Jones donates a kidney to Jane Jones, and Sam Smith donates a kidney to Sally Smith. People who accept an organ from a family member or a friend are circumventing the OPTN organ allocation system. So are the people who donate them. Does that make live organ donation a bad thing? I don’t think so. During the period covered on the previous chart, about 78,000 people received transplants from living donors. That’s a lot of lives saved, and every time a person who receives a transplant from a live donor is removed from the OPTN waiting list that frees up an organ from a deceased donor to be given to someone else. Let’s return to our example. Not everyone who needs a kidney has a family member or a friend who is both willing to donate a kidney and who is medically compatible as a donor. So variations on the theme of live organ donation have arisen. The first of these is called paired exchanges. Using our example, let’s assume that John Jones is willing to donate a kidney to Jane Jones but John and Jane are not medically compatible. Likewise, assume Sam Smith is willing to donate a kidney to Sally Smith, but they aren’t medically compatible. Well, if John Jones and Sally Smith are compatible, and if Jane Jones and Sam Smith are compatible, then they can make a swap. John Jones can donate a kidney to Sally Smith, and Sam Smith can donate a kidney to Jane Jones. Paired exchanges also circumvent the OPTN organ allocation system. Is that a bad thing? Again, I don’t think so. A paired exchange can save two lives and remove two people from the OPTN waiting list, freeing up two future organs to be given to other people. Another type of exchange is called the intended recipient exchange. Again using our example, let’s assume John Jones is willing to donate a kidney to Jane Jones but they are not medically compatible. This time, let’s assume they can’t find anyone like the Smiths with whom they can arrange a swap. In an intended recipient exchange, John Jones donates his kidney and it is transplanted into someone who is on the OPTN waiting list. In exchange, Jane Jones gets bumped up the OPTN waiting list and gets a kidney from a deceased donor sooner than she otherwise would have. Here we have an interesting intersection between live organ donation and OPTN’s system for allocating organs from deceased donors. You don’t need OPTN’s permission to donate a kidney to your sister. You don’t need OPTN’s permission to participate in a paired exchange. But you do need OPTN’s permission and cooperation to arrange an intended recipient exchange. Are intended recipient exchanges a good thing? I think so. In all likelihood, before he found out that his sister needed a kidney, John Jones had no intention of donating one of his. He only decided to donate when he found out his sister needed one. So intended recipient exchanges increase the supply of transplantable organs and save lives. But there is some controversy with intended recipient exchanges. The Jane Jones’ of the world tend to be the people who are hardest to match. They tend to wait the longest on the OPTN waiting list. The organ Jane gets through an intended recipient exchange probably would have otherwise gone to someone else who is hard to match and had been waiting a long time. So intended recipient exchanges may increase waiting times for some people on the OPTN waiting list. A relatively recent development in live donation is the solicitation of live donors over the internet. The most well-known example of this is an organization called MatchingDonors.com. If you need a live donor for a transplant, you can post a profile on the MatchingDonors.com web site. If you’re interested in becoming a live donor you can go to MatchingDonors.com, search the profiles, contact people who need transplants, and select the one you want to donate to. So far, 17 transplants have been completed through MatchingDonors.com and 20 more are scheduled to be completed in the next few months. Over 2,800 potential donors have signed up on the web site. Another example is the Links For Life Campaign. Links For Life is an organization that promotes organ donation and helps people who need organs set up web sites to tell their stories on the internet. So far, 11 members of the Links For Life Campaign have received transplants. Is soliciting organ donors over the internet a bad thing? I don’t think so. People are more likely to undergo surgery to donate an organ if they can select who will get it, so these efforts increase the supply of transplantable organs. MatchingDonors.com and the Links For Life Campaign also increase general awareness of the need for more organ donors, and thereby help everyone who needs a transplant, not just the individuals soliciting donors. Critics of internet solicitation say it’s not fair to people who don’t have the financial resources to take advantage of it. I think this is a weak argument for a couple of reasons. First, MatchingDonors.com does not charge a fee to people who can’t afford to pay, and the Links For Life Campaign doesn’t charge anyone who wants their help. Second, since when is it unfair to use your financial resources to get the best possible health care for you and your family? People use their financial resources to get on the transplant waiting list, to pay for transplant operations, to pay for anti-rejection medicine, and in lots of other ways to improve their health. It makes no sense to put this one area off limits. In fact, I think it is offensive to suggest that people not be allowed to use whatever resources they have in legal efforts to save the life of a family member. Critics also say internet solicitation favors people who can tell the most sympathetic stories, and that non-medical considerations shouldn’t play a role in organ allocation. This is another weak argument, in my opinion, for three reasons. First, these “sympathetic stories” are producing more live donors, saving lives, and freeing up organs from deceased donors to be given to other people who need them. Second, non-medical considerations already play a big part in organ allocation. Age, race, ability to pay, and time spent on the waiting list are just some examples. Third, the argument implies that organ donors should be denied their legal right to decide who gets their organs. If this were to happen, the number of organ donors would go down and the number of people dying waiting for transplants would go up. Professor Richard Epstein of the University of Chicago Law School has written: “individual appeals for organs, often done on line and without any offers of compensation, have elicited some positive responses that have worked to increase overall the size of the donor pool, which has to be regarded as an unambiguous good. There is no reason to believe that donors who are stripped of their right to select their donee will contribute to an anonymous pool of donees.” The last subject I’m going to discuss today is LifeSharers. But before leaving the subject of live organ donation I want to express my admiration for people who would agree to have a part of their body cut out to save someone’s life. This is truly an act of remarkable generosity. But we wouldn’t need many live organ donors if Americans weren’t throwing away so many transplantable organs. We don’t have an organ shortage in the United States. We have an organ donor shortage. Last year, there were about 7,600 cadaveric organ donors in the United States. These generous people provided the organs for about 21,200 transplants. But only about half of the organs from suitable cadaveric donors are transplanted. The other half are buried or cremated. That’s about 20,000 transplantable organs every year. To put that number in context, over 6,700 people were removed from the transplant waiting list in 2004 because they had died waiting. Another 1,600 were removed because, while waiting, they’d become too sick to undergo transplant surgery. Those people will be dead soon if they aren’t dead already. If we could get people to stop throwing away so many organs, we could prevent most of these deaths. We could also reduce the size of the waiting list and shorten waiting times for people still on the list. How do we get people to stop throwing away their organs when they die? We can’t pay them for their organs. That’s illegal. But we can give people a good reason to donate their organs. I started LifeSharers in 2002 to do just that. LifeSharers offers a very compelling trade – if you agree to donate your organs when you die, we’ll give you a better chance of getting a transplant if you ever need one to live. LifeSharers is a national organ donation network. Members agree to donate their organs when they die. They also agree to offer their organs first to fellow members, if any member is a suitable match, before offering them to others. They do this though a form of directed donation that is legal under federal law and under the laws of all 50 states and the District of Columbia. Membership is free and open to all at www.lifesharers.org or by calling us toll-free at 1-888-ORGAN88. Parents can enroll their minor children. LifeSharers is organized as a 501(c)(3) non-profit organization, it is staffed by unpaid volunteers, and we rely on tax-deductible charitable contributions to fund our operations. 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. Critics of LifeSharers say it’s not fair. But LifeSharers makes organ allocation more fair, not less fair. Under OPTN's allocation rules, about 60% of all organs to people who haven't agreed to donate their own organs when they die. It's just not fair to give organs to people who won't donate their own, when there are registered organ donors who need them. It's like awarding the lottery 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 liver is available for transplant. Imagine that two people are a good match for that liver – Mr. Donor, who has committed to donate his organs when he dies, and Mr. Keeper, who has not. Given that people are dying because 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's failure to donate his organs is a spectacularly selfish act. He 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 liver, even if Mr. Keeper is sicker or has been waiting longer. Mr. Keeper has no moral claim to an organ. Giving the liver 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 liver to Mr. Keeper encourages others to delay registering as organ donors or to refuse to register, and that lets more people suffer and die waiting for transplants. Giving organs first to organ donors produces more organ donors, and that saves more lives. LifeSharers has over 4,000 members, including members in all 50 states and the District of Columbia. None of our members has yet received a transplant from another member, because none of our members has yet died in circumstances that would have permitted recovery of their organs. It may take a while before LifeSharers has a big impact on the supply of organs in the United States. But if UNOS adopted the LifeSharers approach as its own, it would very quickly start saving thousands of lives every year. Imagine that UNOS made the following announcement today: "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 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. I bet you would. 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 didn’t agree to donate their organs would be saved. UNOS has the authority to make this change and 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. 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. Even though UNOS has the power to implement this change, and even though it would be easy to do, it has not yet chosen to do so. That is very unfortunate. When it published its white paper on the subject in 1993, the UNOS Ethics Committee said giving organ donors an allocation preference “has the potential to maximize fairness” in the allocation system. They also said it might increase the number of registered organ donors substantially. But they concluded by recommending “wider societal discussion before considering concrete plans for implementation.” In the twelve years since it issued that recommendation UNOS has not led any such discussion, but over 65,000 people on the UNOS waiting list have died. Most of those deaths could have been prevented. Organ allocation need not be a zero-sum game. Organ supply can be increased by changing organ allocation. UNOS should do exactly that, and it should do it now. Twelve years of delay is more than enough. Today, only about 40% of Americans are registered organ donors. Over the last 20 years, millions of millions of dollars have been spent by lots of wonderful organizations trying to make people aware of the need for more organ donors. These efforts have not been successful in reducing the organ shortage. All of the alternatives to the OPTN allocation system we’ve discussed today are helping to reduce that shortage. All of them are legal, all of them are ethical, and all of them are helping save lives. That should be the primary goal of the organ allocation system -- to save as many lives as possible. OPTN and UNOS should not criticize or oppose efforts to save more lives. They should encourage and support them. |
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