Last week the Federal Trade Commission announced that, along with all 50 states and the District of Columbia, it was taking legal action against four 'sham' cancer charities. Allegations that the groups deceived donors to the tune of $187 million have rippled through the non-profit world. We consider what red flags donors should be on the lookout for and how data can - and can't - help us decide who's a good actor.
As the number of patients waiting for kidney transplants rises, the network overseeing how donated kidneys are allocated is considering changes. Currently, those longest on the waitlist usually have priority, but age could soon be a factor, with younger patients favored in some cases. We explore the ethical and medical factors in the debate.
- Ben Hippen Transplant Nephrologist, Carolinas Medical Center, Charlotte, North Carolina
- Bryan Becker Former president of the National Kidney Foundation; Senior Associate Dean for Clinical Affairs at the University of Illinois at Chicago
- Robert Veatch Professor of Medical Ethics at the Kennedy Institute of Ethics; Professor of Philosophy at Georgetown University; Board of Directors of the Washington Regional Transplant Community; United Network for Organ Sharing (UNOS) Ethics Committee
- Kenneth Andreoni Associate Professor of Surgery at Ohio State University; Chair of the United Network for Organ Sharing (UNOS) Kidney Committee.
MR. KOJO NNAMDIFrom WAMU 88.5 at American University in Washington, welcome to "The Kojo Nnamdi Show," connecting your neighborhood with the world. Nearly 85,000 Americans are waiting for a kidney transplant. Only around 17,000 of them are likely to get one this year. The group that oversees organ transplants says changes are needed. One possibility is to try to give younger patients the healthiest, youngest kidneys. Many say the system we have now is fair but flawed. A number of factors weigh in the debate, including ethical issues. It's a life or death scenario not just for the patient given priority but for that patient who does not get the kidney, and there will no doubt be unintended consequences from any changes.
MR. KOJO NNAMDISo joining us to discuss all of these in our Washington studio is Robert Veatch. He's a professor of medical ethics at the Kennedy Institute of Ethics. He is on the board of directors of the Washington Regional Transplant Community and a member of the United Network for Organ Sharing or UNOS. He is on the ethics committee. Robert Veatch, thank you very much for joining us.
DR. ROBERT VEATCHThank you. It's a pleasure to be here.
NNAMDIJoining us from studios at WCBE in Columbus, Ohio, is Dr. Kenneth Andreoni. He's a professor of surgery at Ohio State University and chair of UNOS's kidney committee. Dr. Andreoni, thank you for joining us.
DR. KENNETH ANDREONIAnd thank you. It's a pleasure to be here today.
NNAMDII'll start with you. What are the basics? What do our kidneys do, and what affects their health?
ANDREONIWell, your kidneys are responsible for many functions in your body. When most lay people think of kidney function, they think of the ability to clean out toxic substances from your body. That is break down products of things we use and also to remove excess fluid from our body. Our kidney has many other more complicated functions, such as helping us make red blood cells et cetera.
NNAMDIWhat are the main causes of chronic kidney disease?
ANDREONIWell, in this country, there are several different peaks of when different diseases affect people with kidney problems. People who are older tend to have most of their kidney disease from years of diabetes and hypertension. Folks who are younger have many types of urological and anatomical problems or autoimmune diseases that can affect their kidneys.
NNAMDIAre there some groups that are at higher risk for kidney disease than others?
ANDREONIThere are in this country people who are more apt to get high blood pressure and diabetes are more likely to also get kidney disease. In this country, that does include the African-American community.
NNAMDIHow about Hispanics?
ANDREONIHispanics also have a bit of an increased risk again with their increased risk of diabetes.
NNAMDITell us what UNOS is, the United Network for Organ Sharing, and what role it plays in the transplant system.
ANDREONIWell, I'm a volunteer for UNOS. UNOS is a non-for-profit organization that administers a contract from the federal government to help oversee the issues of transplantation. So they do not actually -- they're not a government agency, per se, but they administer a contract through HRSA to try to get the transplant community together and decide on fair and equitable allocation issues.
NNAMDIWe've all heard of dialysis. What is it, and when does dialysis enter the picture?
ANDREONIWell, dialysis is an artificial way of, again, trying to reproduce the function of the kidney to clean out our blood and also to remove excess fluid. There's different types of dialysis. The most common being the hemodialysis, where someone is attached to a machine and the blood is removed from their body and run through special filters. There's also what we call peritoneal dialysis, where a special fluid is placed inside someone's abdomen, and that helps also to remove excess fluid and waste products.
NNAMDIThen the stage we're talking about today is kidney failure, also known as renal failure. What does that mean for the patient?
ANDREONIWhat that means is that the kidneys are not working well enough to provide these necessary functions through the day. That is to clean out their blood and to remove fluid, so they cannot go on in a healthy fashion.
NNAMDIIn case you're just joining the conversation, we're talking about suggested changes to the system of organ donation, especially when it comes to kidney transplants. Inviting your calls at 800-433-8850, or you can go to our website, kojoshow.org. Ask a question or make a comment there. Send us an e-mail to firstname.lastname@example.org or a tweet, @kojoshow. Robert Veatch, because of dialysis, renal failure isn't a death sentence, but is there a limit as to how long someone can wait for a kidney?
VEATCHA person who's in renal failure without a kidney transplant can be dialyzed for a fairly long period of time, years perhaps, but as a general rule, dialysis patients don't do as well as kidney transplant recipients. So that life is generally better for people in -- with kidney disease if they can get a transplant. It's, in a way, a kind of lifesaving surgical intervention in spite of dialysis.
NNAMDIKen Andreoni, how many Americans right now are waiting a kidney transplant?
ANDREONIThere are approximately 88,000 people on the list now waiting at the (unintelligible) transplant.
NNAMDIRobert Veatch, there are two kinds of kidney donations, those from a living donor and those from a deceased donor. Can you talk about the distinction?
VEATCHYes. The majority of transplants historically have come from people who've died in automobile accidents or otherwise been declared dead by brain criteria. We're getting better and better, however, at procuring kidneys from living donors. We all have -- most of us have two kidneys. We really can get by with one, so often, a family member is willing to step forward and have a kidney surgically removed and transplanted. If that can be done, we get an even better result than from a deceased donor.
NNAMDIAnd I guess kidneys are different from other organs in terms of transplants and allocation is because, one, most of us can live with one kidney, and that, we mentioned earlier, that people can live for some time on dialysis.
NNAMDISince this is a discussion about allocation of kidneys, we're focusing on those from deceased donors today, because those from living donors are usually being donated for a specific patient, a family member or friend called directed donation, while deceased donor kidneys go to those on the waiting list for a transplant. Robert Veatch, UNOS is developing a proposal to change how donated kidneys are allocated. Before we get into that, I'd like to get an understanding of how the system works now in terms of who needs a kidney and who gets one.
VEATCHRight now, if you meet the criteria for being listed for a kidney transplant, your name goes into a computer with all the others who are waiting, and an allocation formula is used based on a computerized model that gives some attention to the degree to which the recipient matches the donor, pays attention to whether a potential recipient has been sensitized to other foreign tissues. But right now and for the past 20 years or so, the key factor in deciding how kidneys is allocated is time on the waiting list.
NNAMDIOne concern is the disparity in access to kidneys in different regions. How does that work currently?
VEATCHIf a kidney becomes available, it is allocated according to the computerized algorithm, but priority goes to patients on the waiting list in the local area from which the kidney was received. And for various reasons, the demand for kidneys varies from one geographical area to another, and the supply varies. The net result is that there are many more waiting on the waiting list in some cities than in other cities.
NNAMDIKen Andreoni, care to comment on that?
ANDREONIWell, that is correct. I would say that the current system now, as Dr. Veatch has said, is based mostly on wait time. However, what we need to remember is when this system was originally created many decades ago, the large majority of points that went to deciding who would receive a kidney was based on -- more on the medical criteria of how well someone matched, and that was due to the fact that our medications were not as good to prevent rejection. So this current allocation policy, which is in play today, was originally based more on medical matching, and then, time was pretty much a tiebreaker. And as our medications have gotten better and our outcomes have gotten better, the medical criteria has been whittled away to a very small minority of the points given to how our organs are now allocated.
NNAMDIBecause now anti-rejection drugs are much better, and therefore, the transplant surgery is much more common so being a perfect match is no longer a major issue. Is that correct?
ANDREONIYou are correct.
NNAMDIYou can join this conversation. Call us at 800-433-8850. Are you a transplant patient or donor? What has been your experience? We're talking with Dr. Kenneth Andreoni. He's a professor of surgery at Ohio State University and chair of the kidney committee of UNOS, the United Network for Organ Sharing. Also with us in our Washington studio is Robert Veatch, a professor of medical ethics at the Kennedy Institute of Ethics. Dr. Veatch is on the board of directors of the Washington Regional Transplant Community. He's also a member of the ethics committee of UNOS. We can go to Steve in Silver Spring. Steve, you're on the air. Go ahead, please.
STEVEOh, thank you. I have a question that I've never heard asked before. Why do people who aren't signed up as organ donors themselves become eligible for an organ? Shouldn’t we say to people if you aren't a registered organ donor, you don't get one? Because right now, there's no incentive for people to sign up to be an organ donor, other than altruism.
STEVEIt sounds kind of -- go ahead.
NNAMDIRobert Veatch, how ethical is that?
VEATCHWell, some of us have, in fact, advocated that we take into account whether someone has been an organ donor. But the allocation decision is a very complicated one. Many people can't be organ donors because they're not mentally competent to donate. They may be children, for example. So right now, since we get organs from everyone, we also allocate organs to everyone.
NNAMDIThank you very much for your call, Steve. Robert Veatch, the National Transplant Act of 1984 mandated that the system be both fair and efficient. You've said that initially the system was focused on efficiency, but it was not very fair. What do you mean by that?
VEATCHWell, as Dr. Andreoni suggested, originally we used medical criteria, primarily the extent to which the donor and the recipient match up. When we put that policy in place, we thought it only made sense to use organs as efficiently as possible. Unfortunately, we discovered that that arrangement discriminated against certain groups. For instance, blacks did not match up with the donor pool as well as Caucasians, so we very quickly developed a system that was unfair in favoring one group, one ethnic group over another. That's what led to the correction to add time on the waiting list as a critical decisive factor in allocation.
VEATCHWe're now debating whether we need to shift back again and also take into account efficiency criteria. The real problem is, in the new proposal, there's very careful, detailed complex analysis showing we could be more efficient, for instance, by matching people on the basis of age. There is, in the concept paper, no comparable detailed and complex analysis to see whether the present system is -- meets the criterion of fairness or equity.
NNAMDIKenneth Andreoni, UNOS has not been very happy with how the media have been reporting on this. So can you explain for us what are the changing being -- changes being considered now?
ANDREONISure. The three concepts that we have put out here that we want feedback on -- and the truth is we actually do want good, positive and negative criticisms with ideas -- is to try to make the system both more efficient and, especially to try to use the gifted organ better. The big picture, which I hope you will take home today, is if we had enough donated organs for all the people who could benefit from them, then the allocation issue would be much less worrisome right now than it is. And that is really number one key to the whole day conversation.
ANDREONIThe concepts that we have come up with here is, number one, to change the way we look at the estimated quality of the gifted organ. So right now, when someone is kind enough to donate an organ, we -- the system looks at the qualities of the donor, their age, their diseases, how they passed away, et cetera, and we decide if that kidney is what we now call a standard-criteria kidney or an extended-criteria donor kidney. And the difference is that an extended-criteria donor kidney has a higher risk of not functioning as well as the larger pool of the standard kidneys. And right now, this is about 17 percent of the organs.
ANDREONIThis was originally conceived a number of years ago so that people who may benefit from these higher-risk organs would be educated about them ahead of time, informed properly, actually sign a consent form, and they would then be put on a shorter list of people who are willing to take these organs. Again, have knowledge about the quality as well as have better efficiency so that transplant would happen more quickly. That system really hasn't played out as well as it should have for a number of reasons, which can take several hours to go through.
ANDREONISo what we're looking at now is a more continuous scale of the quality of a kidney. Is it approximately in the top 10 percent, the top 40 percent, 60 percent, et cetera? And with that sliding scale, we believe people can make better, informed decisions, and we can allocate organs more efficiently.
NNAMDIWe're gonna take a short break. When we come back, we will continue this conversation about suggestions to the -- for changes to the system of organ donation where kidney transplants are concerned. But we still have the phones open, so you can call us at 800-433-8850. Do you think people on the wait list longer should get priority for a kidney? Or do you think another system would be better? 800-433-8850, or go to our website, kojoshow.org, and participate in the conversation there. I'm Kojo Nnamdi.
NNAMDIWelcome back. We are looking at the system for kidney donation and kidney transplants. And in studio with us is Dr. Robert Veatch. He's a professor of medical ethics at the Kennedy Institutes of -- Kennedy Institute of Ethics. He also serves on the board of directors of the Washington Regional Transplant Community. He's a member of the United Network for Organ Sharing's ethics committee. Joining us from studios in Columbus, Ohio, is Dr. Kenneth Andreoni. He is a professor of surgery at Ohio State University and chair of UNOS's kidney committee. Joining us now by telephone from Chicago is Dr. Bryan Becker. He is the former president of the National Kidney Foundation. Dr. Becker, thank you for joining us.
DR. BRYAN BECKER...for having me.
NNAMDIThe National Kidney Foundation agrees with many of the changes that Ken Andreoni described. What are some of the ways you think those changes would benefit kidney patients?
BECKERWell, I think it has been important, from the perspective of the National Kidney Foundation, to work with Dr. Andreoni's committee. UNOS is an organization with the primary focus on how to increase the number of organs available for transplantation and increase the number of organs used for transplantation. The proposal and the allocation concept paper that was drafted by UNOS raises these thoughts in the context of several different perspectives that are trying to apply use of our, as accurate as possible, historical information to better understand how a kidney, going into someone who needs it, will last the longest for that person.
BECKERAnd by lasting the longest, we not only hope that person will just not live longer but feel more comfortable in his or her own life and feel more comfortable in making a contribution back to society in ways that they want to do. I would say the proposal has emphasized some ways we can focus on that by measuring how a kidney looks, if you will, through a measure called the kidney donor profile index and by trying to make -- match up kidneys that are close to but not necessarily entirely like the person who is getting them, a kidney that looks like the recipient.
BECKERAnd the opportunities that that may lead to in using organs that are previously not being used and encouraging others to donate, we believe, from the perspective of the National Kidney Foundation, has an opportunity to expand, in some way, the number of people who ultimately will receive a deceased donor kidney.
NNAMDIRegional access was one area of concern, and you don't think that these changes -- these suggested changes would address that problem. What are other concerns the National Kidney Foundation has?
BECKERCertainly, I would reemphasize that one of the concerns the National Kidney Foundation put out there is that addressing disparities and access to transplantation is important, and this paper does not do that in its present construct. There are some other aspects on how kidneys could be or should be allocated in medical emergencies that really is very important. There are people who are running out of ways that they can dialyze and certainly need to have and should be offered the benefit of the opportunity of a transplant. And that's not something that's been discussed in the context of this particular paper.
BECKERAnd there are some other aspects of the entire process that I think are important pursuant to the unintended consequences seen. What are the ramifications of this as we look at it? In particular, how do we advocate, for instance, for enhancing living donation in other ways, even though we're also advocating deceased donation? Those are some of the things that the National Kidney Foundation has explored in its own discussions in looking at this particular allocation concept paper.
NNAMDIHere is Tom in Beltsville, Md. Tom, you're on the air. Go ahead, please.
TOMI wanted to share with everyone that I'm a kidney transplant patient. I had it in 1992 after four years on dialysis. I received a perfect match, and I've had relatively little problems with my kidney for the almost 19 years that I have it. I'd like to endorse, one of the doctors had mentioned, that probably one of the best things that can be done in every initiative that's taking place is to make people aware of the fact that if we increase the number of donations, 16,000 people plus that are on the list would probably be dealt with a great deal quicker than any other mechanisms that we're trying to put in place.
NNAMDIThank you very much for your call, Tom. The increase in the number of donations seems to be one thing that all of our panelists agree on, so I would like to share with you an email that we got from Carolina who says, "In order to increase the number of available kidneys, why not have an opt-out system, meaning your organs will be removed once you are determined to be brain dead? If you do not want your organs donated, you would have had to specifically designate in a document that you did not want your organs donated." How do you feel about that from an ethical standpoint, Robert Veatch?
VEATCHThe debate between opt-out and opt-in systems goes back to the 1960s. Some countries, usually countries that focus less on individual liberty, have actually endorsed opt-out systems, particularly in Southern Europe, in Scandinavia, and Asia. The countries in the Anglo-American and Germanic World that give great emphasis to individual rights and individual liberty have been very hesitant to change, mainly because if we go to an opt-out system, we have to do something to assure that everybody knows exactly what's at stake, and that would be an enormous educational process. We've opposed opt-out systems in the United States, although increasingly, people are giving serious consideration to that alternative.
NNAMDICare to comment on that opt-out system, Bryan?
BECKERI think -- I would note that Dr. Veatch has really pointed out some of the conundrums associated with opt-out as it would be applied in, certainly, the United States as we focus on how we view choice. I would also note that there are areas where, what are called donor service areas or where organ procurement is -- organ donation is encouraged and organ procurement occurs through an organ procurement organization. And in many areas in the United States, we have achieved, not in the majority, but in some very high organ donation rates that approximate the organ donation rates that are, for instance, achieved in Southern Europe, which are using opt-out types of approaches.
BECKERSo we have ways in the United States to encourage organ donation, and the success of the organ donor breakthrough collaborative process had a significant uptick in organ donation only a few years ago through concerted and focused efforts and consistent methodology across multiple entities.
NNAMDIHere is Ed in Pikesville, Md., talking about other countries again. Ed, your turn.
EDYes. Thank you very much. I wanna point out that a significant point was missed a few minutes ago with regards to the ethics associated with donating. There are several countries, I believe Israel is one them, that have a rule or perhaps it's even a law, that you must give to get, period. You must give in order to get.
EDAnd maybe it comes from the kibbutz mentality. I don't know. But that's how the donation system works there. And I'd like to hear your comments. Thank you.
NNAMDIWell, Robert Veatch did comment on that earlier. But we'll ask him to comment on it again.
VEATCHI have supported the idea that having been willing to donate organs should be one factor in deciding priorities. I think it would be a mistake to make it the only factor. There are too many people who would be left out, for instance, children, who are not competent people so they can't donate, would have to make arrangements. We'd also have to make arrangements to short circuit the idea that once people are diagnosed with kidney failure that run out and quickly sign up so that they would get a priority. Giving in order to get -- your term -- is a complicated idea that's worthy of some consideration. I would give it some points in the allocation formula, but I wouldn't make it an all-or-none factor.
NNAMDIKen Andreoni, care to comment on give to get?
ANDREONIWell, that's an interesting concept. There actually are some organizations out there that are putting this forward. And again, I agree with Dr. Veatch, there are some interesting arguments on both sides. The Israel system from what I understand, and I did read up on this recently, simply gives the people who have signed a donor card some increased opportunity. But if you have not signed a donor card, you, then, are in kind of the second group, and if no one in the first group wants, you still can receive. So the caller has a point. It wasn't, I believe, exactly correct. But the point is well taken.
NNAMDIHere is Melina (sp?) in Annandale, Va. Melina or Melina, go ahead, please.
MELINAIt's Melina. Thank you, Kojo, for taking my call, and greetings to your expert panel. I am an organ donor, in part, because my father received a kidney transplant in 1990. At the time, he had been on dialysis for three years, and he was not a good candidate for a transplant. In fact, I know this because a relative of mine was the head of the transplant decision committee. He recused himself, of course, because he was a relation. And the committee eventually decided to give my father a kidney because his transplant nephrologist knew that my father had an incredible fighting spirit.
MELINAHe went on to have 17 years of incredibly productive life, despite the fact that he was blind and suffering from other consequences of diabetes. He volunteered with the United Way, the Red Cross, the library board of his community, the mayor's traffic commission. I mean, he spent basically the last 17 years of his life giving back to his community. I wondered, under any new proposed guidelines for kidney transplants, what weight would be given to knowledge of the patient, what they can give back to their community and their, I guess, level of willingness to fight for that better life.
NNAMDIDr. Bryan Becker.
BECKERIt's -- first of all, I'm glad, Melina, that your father had done so well. There was a great deal of interest in a previous iteration of revising kidney allocation to look at measures of that exact type of contribution or productivity, if you will. And it started with a focus on living life years, and it tried to encompass quality of life and indeed other measures of activity.
BECKERUnfortunately, we probably lack the key pieces of data in a serial monitoring way to really evaluate that successfully. It is a very important component of looking at a candidate's benefit for a transplant, but we lack some of the critical information to be able to use that effectively in decision making at this point in time. Hopefully, we'll be able to do a better job with that as we learn how to accrue such information in the future.
NNAMDIGot to take a short break. Dr. Becker, thank you so much for joining us.
BECKERThank you very much, Kojo.
NNAMDIDr. Bryan Becker is the former president of the National Kidney Foundation. We're talking about suggested changes in the system of kidney donation for organ transplants and taking your calls at 800-433-8850. Dr. Andreoni and Dr. Veatch will be staying with us. And when we come back, we'll be joined by Dr. Benjamin Hippen, who is a transplant nephrologist at the Carolinas Medical Center in Charlotte, N.C. But you can still call us, 800-433-8850. Or if that line is busy, go to our website, kojoshow.org. Join the conversation there. I'm Kojo Nnamdi.
NNAMDIWelcome back to our conversation about suggested changes to organ donation in kidney transplants. We are joined from studios at WCBE in Columbus, Ohio, by Dr. Kenneth Andreoni. He is a professor of surgery at Ohio State University and chair of the kidney committee of the United Network for Organ Sharing or UNOS. In our Washington studio is Dr. Robert Veatch. He is a professor of medical ethics at the Kennedy Institute of Ethics. He's on the board of directors of the Washington Regional Transplant Community and a member of the ethics committee of UNOS. And joining us now from studios at WFAE in Charlotte, N.C., is Dr. Benjamin Hippen. He is a transplant nephrologist at the Carolinas Medical Center in Charlotte, N.C. Dr. Hippen, thank you very much for joining us.
DR. BENJAMIN HIPPENNice to be with you, Kojo.
NNAMDIYou have outlined some issues with the changes suggested by UNOS, possible unintended consequences of the changes that concern you. What would those be?
HIPPENWell, there are three basic ones, Kojo. The first one is that good ethical analysis really requires good data, and I think what's really lacking in this concepts proposal and its prior iterations is that data. The real concern here is that the statistical models that have been created out of this data to predict which kidneys are gonna be in the top 20 percent or the bottom 80 percent, or which candidates are gonna be in the top 20 percent or bottom 80 percent in terms of graft and patient survival, have a high rate of error, perhaps as much as a third of the time.
HIPPENIt's not clear whether or not when those kidneys or those candidates are being mistriaged, whether those mistriages will actually be randomly distributed across every kidney or every potential candidate, or whether those will -- those errors in triage will disadvantage particular candidates. And that's important, because kidney disease is not randomly distributed across the U.S. population. As Dr. Veatch observed, although African-Americans make up about 11 percent of the U.S. population, they make up about a third of patients on the waiting list and who are currently on dialysis. So that's one general concern, that we have to get the data straight first.
HIPPENBut in terms of the more -- particularly ethical concerns -- I've real worries about the unintended consequences of preferentially allocating kidneys from the top 20 percent of quality to the top 20 percent of candidates who are thought to be able to do better or live longer. And in particular, we have to keep in mind that this is a proposal focused strictly on kidneys from deceased donors, those make up about two-thirds of the kidneys that are donated every year. The other third is made up of kidneys who are donated from living donors. And we now, from a rule that was passed in 2004, that when you change allocation preferences for kidneys from deceased donors, it has an impact on living donor patterns.
HIPPENSo back in 2004, a rule was enacted through UNOS called the Share 35 Rule. And what this rule did was, it preferentially allocated kidneys from deceased donors under the age of 35 to pediatric recipients. The thought there was that pediatric recipients tended to do very poorly on dialysis and so transplanting them as quickly as possible was a real priority. And so, after Share 35 was implemented, we did, in fact, see, over the next five years, an increase in the number of deceased donor kidneys that went to pediatric recipients, but we also saw, though -- and it really wasn't expected -- was a drop off in the number of kidneys donated to pediatric recipients from living donors.
HIPPENAnd that's important because kidneys from living donors tend to last longer and have fewer complications than kidneys from deceased donors. So the Share 35 Rule did indeed increase the number of kidneys from deceased donors that went to pediatric recipients, but it came at the expense of living donation. And the point of this whole concepts document is to try and increase the number of life years from transplant. In the case of Share 35, that didn't happen. The import for the larger allocation system is that recipients who are aged 18 to 34, which make up about 10 percent of the list, get about 50 percent of their kidneys from living donors.
HIPPENPatients who are 35 to 49 get about 40 percent of their kidneys from living donors. So if the unintended consequences of Share 35 for pediatric recipients are based upon the 18 to 34-year-olds or the 35 to 49-year-olds, well, then yes, they would be getting preferences for kidneys -- for better kidneys from deceased donors, assuming we can predict that, but would probably come at the expense of living donation, and that would be a terrible problem. Finally, although there's been a lot of talk about the potential benefits from this system, what there hasn't been so much talk about are the potential risks and harms from the system.
HIPPENIn the concepts document, it's clear that at least based on the statistical models, the concept -- the proposal would end up taking about 10 percent of kidneys that would otherwise be allocated to recipients over the age of 50 and preferentially allocating them to younger recipients in general. There are few more variables involved, but in general, that's the case. Well, it turns out that 50 to 60 (unintelligible) made up -- make up the bulk of the list. They make up over 40 percent of the list currently, and they make up over 40 percent of the new patients added to the list every year.
HIPPENSo, as a consequence, one potential harm of the new system would be that the majority of patients on the waiting list would, first of all, have fewer opportunities to get a kidney from a deceased donor. And secondly and more importantly, there would be more of those patients who would wait longer on the waiting list, conceivably die waiting for a kidney or have to be removed from the waiting list without a transplant because they become too sick.
NNAMDISo to deal with your last point first, what you seemed to be suggesting is that 50 to 64-years-olds would be, in a way, discriminated against if these suggested changes are put into effect?
HIPPENI wouldn't put it quite that way. They would have fewer opportunities for transplant, at least that's how it's been modeled.
NNAMDIWell, we got a post on our website from Jack who says, "I am both an organ recipient, cornea, and donor, kidney. In general, I strongly believe that organs should go to younger recipients. I have had the gift of sight for over 30 years. The other recipient was 80 and lived for six years." How would you respond to that, Ben Hippen?
HIPPENWell, I think the way in which to think about benefit after transplantation is whether an individual benefits from a transplant versus not receiving a transplant. That 80-year-old may not have lived as long, but the remaining years that that 80-year-old lived were likely good years, years that they didn't otherwise have. That's how we approach patients in our clinic. I think that's how we should approach allocation. We don't have enough kidneys. There's a growing disparity between the demand for and the supply of kidneys.
HIPPENAnd the way in which to address that is to increase the number of available organs primarily from living donors because, as Dr. Becker alluded to through the efforts of the Organ Donor Collaborative, we have done just about all we can do to maximize the number of kidneys from deceased donors.
NNAMDIAnd I'd like our other panelists, Dr. Robert Veatch and Dr. Kenneth Andreoni, to respond to another point that you made, Dr. Hippen, and that is that if there is in fact -- as a result of these suggested changes, if they are affected -- if there is in fact an increase in the number of deceased donations then you said it would quote unquote "probably come at the expense of living donation based on what you saw with pediatric kidney transplant." The word probably, Kenneth Andreoni, first.
ANDREONIWell, thank you. Again, I've heard Dr. Hippen's points before, and actually we know each other and have discussed this in the past. I think one major point that Dr. Hippen is overlooking in the concepts here, especially in the top 20 percent of kidneys to the longest living 20 percent, versus the pediatric Share 35, is what actually happens in the system. So in the Share 35 pediatric, there are many areas of the country, where, when a child is placed on the list, they may be the only child in that blood group that day. So they, of course, will get the next kidney.
ANDREONIAnd there are only about 450 pediatric kidney transplants done per year around the entire country. So because of that fact that in some areas of the country, when a child is listed, they may be first on the list, that probably has led to that concept of some small decrease in living donation for these children. However, in the policy in which we put out these concepts to discuss, 20 percent of an adult wait list of 500 people will still be 100 people. Those 100 people will then need to be rank ordered, based on variables we haven't yet determined, but will most likely be heavily weighted toward wait time.
ANDREONISo, again, if you're the person added to the list today, and you're quote "in the top 20 percent," if there's 100 people, you're likely to be somewhere between 95 and 100. So you're still gonna need to wait a significant period of time for your disease donor organ offer. That should not decrease living donation to a significant amount. Again, education is a big part here. And also educating people as to how much better the average live donor kidney does than deceased donor kidney transplants is an important topic.
NNAMDIRobert Veatch, same question.
VEATCHI would agree that we need a much clearer understanding of exactly how the system will work, and we have to qualify our comments with probably in such words. To me, the really significant ethical issue in the concept paper is age matching and giving priority to those who will get the most benefit. Quite frankly, we haven't done the work necessary to figure out whether it is fair to give increased priority to younger people. Some would argue that fairness requires everybody get the same right of access.
VEATCHI happen to believe that fairness, in fact, requires giving younger priority -- younger people priority. I like that part of the concept paper. There are other people who, I believe, will end up being treated unfairly as the concept paper is written. Primarily, people with unusual genotypes -- that is, racial minorities -- and also patients with diseases like diabetes are likely not to do well. And we need to have a long, clear discussion over whether those implications increase or decrease the fairness. The paper is motivated primarily out of a concern to use kidneys more efficiently. And it often happens if we make the system more efficient, we also make it less fair. That's where the work hasn't been done.
NNAMDIDr. Hippen, would it be an oversimplification of your position to say that you come down on the side of everyone getting the same access?
HIPPENNo, that's a pretty good summary of my position. I think that trying to compare life years after transplant for different people is fraught with difficulty. A lot of that has to do with the fact that comparing years after transplant between individuals is quite difficult. A 55-year-old who gets an additional six years after transplant may value those six years greatly. As one of your callers pointed out, her father was an elderly recipient who could conceivably be disadvantaged under this proposed system.
HIPPENI think that her -- I mean, her story clearly demonstrates that her father got a lot of benefit from transplant. And, on the other hand, there are some young recipients who may not either enjoy the projected number of years from transplant, or -- and, frankly, comparing a 25-year-old to a 55-year-old in terms of, you know, what their benefits are going to be from transplant strikes me as fraught with peril. I did wanna come back and address one of Dr. Andreoni's concerns with regard to Share 35.
HIPPENDr. Andreoni observed that at least some of the 18- to 34-year-olds would have to continue to wait on the waiting list because the number of kidneys wouldn't actually go up. That presumes, though, that the number of 18- to 34-year-olds is uniformly distributed around the country and across donor service areas. That's unlikely to be the case. In fact, what's likely to happen is that, in some donor service areas, there will be a 20 percent cohort that is much more favorable to young people. And there will be other ones in which it's a wash.
HIPPENThose areas, those donor service areas where it's much more favorable to be young, will attract the young. And you'll find -- not unlike what we have now, where people multi-list in centers where there are disparities in waiting time -- people will preferentially -- particularly if they are likely to fall into that 20 percent range in a given donor service area -- go there and be listed there.
NNAMDIOn to Carol in Easton, Md. Carol, you're on the air. Go ahead, please.
CAROL...taking my call. My question is twofold. Listening to your show and your guests, I'm clearly motivated to be or become an organ donor. However, I have a reservation that I've always had whenever I'm asked about becoming an organ donor. My husband actually pointed this out to me and said, if you become an organ donor, does that mean that should I be in an accident, or a car accident or in something that puts me into critical condition? Knowing that I'm an organ donor and obviously the need and demand for organs, is a doctor more likely to terminate me or to say that I'm, you know, on my last leg than -- you know, we really -- am I more likely to be let go because I'm an organ donor, or will a doctor do everything he can to try to save me regardless whether I'm an organ donor or not?
NNAMDIRobert Veatch, that under the no good deed goes unpunished category.
VEATCHYes. I've always been a militant proponent of patient's rights, and I would be concerned of this if there were any evidence that it, in fact, occurred. In fact, the transplant system goes to great lengths to make sure that patients will be treated aggressively. There's a division of labor where the emergency room doctors will fight as long as possible. And then a new team will come in to do organ procurement. I don't think there's any evidence whatsoever that patients are not treated aggressively if they're organ donors. In fact, sometimes the emergency room doctors don't even know whether the patient is a donor or not.
NNAMDIAnd we're running out of time fairly quickly, Dr. Andreoni. But we got this email from Constance in Silver Spring. "According to a letter I read in The New York Times, kidney donors automatically acquire a preexisting condition, and, for the rest of their lives, will not be able to get private medical insurance. To increase the supply of organs, don't let insurance companies define donating a kidney as a preexisting condition, and make sure they don't cheat by finding some other trivial reason to deny insurance to donors." Is that true, Dr. Andreoni?
ANDREONIWell, it is true that we need to do everything we can to remove the obstacles to living donation. Whether some insurance companies consider it a preexisting condition can be a true statement, but not all insurance companies do this.
NNAMDIAnd I'm afraid that's all the time we have. Dr. Kenneth Andreoni is a professor of surgery at Ohio State University and chair of the Kidney Committee of the United Network for Organ Sharing or UNOS. Robert Veatch is a professor of medical ethics at the Kennedy Institute of Ethics. He's on the board of directors of the Washington Regional Transplant Community and a member of the Ethics Committee of UNOS. And Dr. Benjamin Hippen is a transplant nephrologist at the Carolinas Medical Center in Charlotte, N.C. Thank you all so much for joining us, and thank you all for listening. I'm Kojo Nnamdi.
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