A donor is wheeled to an operating room for a kidney transplant at Johns Hopkins Hospital June 26, 2012 in Baltimore, Maryland. Doctors from Johns Hopkins transplanted the kidney from a living donor into the patient recipient.

A donor is wheeled to an operating room for a kidney transplant at Johns Hopkins Hospital June 26, 2012 in Baltimore, Maryland. Doctors from Johns Hopkins transplanted the kidney from a living donor into the patient recipient.

Close to 100,000 Americans are on the wait list for a kidney transplant. Each day 14 of those people will die. Some patients are too sick to be saved, but many of those deaths could have been prevented if they had received a new kidney in time. Meanwhile, rates of hypertension and diabetes continue to rise, which means demand for transplant organs will only increase. A discussion about why the list is growing, how to increase life-saving donations and the ethical questions involved.

Guests

  • Sigrid Fry-Revere president, Stop Organ Trafficking Now and author, "The Kidney Sellers: a Journey of Discovery in Iran."
  • Matthew Cooper director of kidney and pancreas transplantation, MedStar Georgetown Transplant Institute.
  • Sally Satel psychiatrist and resident scholar, American Enterprise Institute.
  • Arthur Caplan director of the division of medical ethics, New York University Langone Medical Center.

Transcript

  • 11:06:53

    MS. DIANE REHMThanks for joining us. I'm Diane Rehm. Over the last decade, the number of people on the waiting list for a kidney transplant has nearly doubled. And the wait time to receive a donation has increased by more than half. Meanwhile, people are dying from what many see as preventable deaths. Joining me in the studio to discuss solutions to the country's kidney shortage, Dr. Matthew Cooper of the Georgetown MedStar Transplant Institute and Dr. Sally Satel, of the American Enterprise Institute.

  • 11:07:31

    MS. DIANE REHMJoining us from NPR in New York, Dr. Arthur Caplan of New York University Langone Medical Center. I hope you'll join in to the conversation. Give us a call. 800-433-8850. Send us an email to drshow@wamu.org. Follow us on Facebook or send us a tweet. And welcome to all of you.

  • 11:07:59

    DR. MATTHEW COOPERThank you for having us.

  • 11:08:00

    DR. SALLY SATELThank you.

  • 11:08:01

    DR. ARTHUR CAPLANThank you.

  • 11:08:02

    REHMGood to have you with us. Dr. Cooper, I'll start with you. Outline the situation for us. How bad is it?

  • 11:08:12

    COOPERWell, end stage renal disease, even more specifically, those conditions that ultimately often lead to end stage renal disease, namely hyper tension and diabetes, has honestly become an epidemic in this country. The challenge is is that often, these folks go on to develop end stage renal disease, and we've, with lots of data, have demonstrated that transplants, as compared to dialysis, really is the best choice for replacement of an organ failure. We have also then, because of that, educational process developed an enormous waiting list. There's about 100,000 people, just here in the United States, that are waiting for a transplant.

  • 11:08:53

    COOPERMost of those, unfortunately, do not have an obvious or a willing living donor. And so, what happens in a supply and demand market, is that that wait time for a deceased donor organ averages, oftentimes, somewhere between three and five years, for an average patient. And some people wait even longer if they've been what we call sensitized. So, those that may have been transplanted previously, women who have been pregnant, even those that have received blood transfusions, which is not uncommon for folks on dialysis or approaching dialysis needs.

  • 11:09:25

    COOPERAnd so, it becomes, as I said, a true epidemic. Many people who need an organ, but unfortunately not enough that are readily available to meet that need.

  • 11:09:34

    REHMIn transplantation, how many are relatives who make the donation? How many are from cadavers?

  • 11:09:45

    COOPERSo, year after year, there's approximately 15 to 16,000 transplants that occur across the United States. About half are from living donors, half are from deceased donors. We do have to appreciate that deceased donors have the potential of donating two organs, living donors only one. And so, those numbers are substantial that come from living donors to even make up that figure of 16,000 per year.

  • 11:10:11

    REHMDr. Caplan, people are asked to, especially on their driver's licenses, make these donations. I gather it doesn't always happen.

  • 11:10:28

    CAPLANSadly, Diane, it doesn't. Different states have different rates with respect to people signing their driver's license, or entering a computer registry, which many states have. Some states are up at 60 percent, like Ohio. Where I am in New York, the rate is much lower. It's probably only 40 percent of people saying they want to be, or would be, an organ donor. So, there's work to be done in that area. Sources of resistance range from some distrust of the healthcare system, anger at it, because people have felt, perhaps, they couldn't get a transplant if they needed one, cause they couldn't afford it, or the system wouldn't take them in.

  • 11:11:12

    CAPLANFavoring the wealthy or celebrities. Whether that's right or wrong, it's a fear that's out there. Other people feeling on religious grounds or personal grounds that organ donation might interfere with the kind of funeral they want, which, again, I don't think is true, but it's a worry that's out there. So, we aren't where we should be with respect to cadaver donation.

  • 11:11:35

    REHMWell, realistically, with a hundred thousand people on a waiting list, how is it determined, Dr. Caplan, who gets the next kidney and who doesn't.

  • 11:11:51

    CAPLANWell, we do have a system. It's been in place for a long time. It's run by something called The United Network For Organ Sharing. It sets rules for the distribution of kidneys. And, by the way, hearts and livers and other organs, as well. Obviously, the competition for scarce cadaver organs is ferocious. It certainly is a situation where rationing, and I use that word deliberately, Diane. Rationing is an everyday reality of healthcare, despite the fact that we sometimes hear it shouldn't be a part of healthcare. In this area, it is.

  • 11:12:29

    CAPLANIt will be for the future. So, a combination of factors. Your blood type, your, if you will, your immune system. There are biological facts that make people matches or not matches.

  • 11:12:43

    REHMSure.

  • 11:12:44

    CAPLANGeography. If there are local people who might get an organ, we are not gonna ship it half way across the United States, and more and more frequently, organs stay kind of locally where the donors are. There are also how sick you are, what other illnesses you have, your chance of success, so it's a wide range of variables. Some psycho-social. Are you likely to take your medicine and comply with what you have to do after the transplant, 'cause you gotta stay on immuno-suppression. Some might be whether you're a prisoner, whether you have severe mental illness.

  • 11:13:21

    CAPLANThose factors can weigh in. And, literally, how likely are you to die soon or not be able to tolerate dialysis anymore. All of that mix.

  • 11:13:32

    REHMAnd turning to you, Dr. Sally Satel, you're not only a psychiatrist, you edited a book titled, "When Altruism Isn't Enough: The Case For Compensating Organ Donors." Talk about what you mean by compensating organ donors.

  • 11:13:57

    SATELWell, Diane, I have a third identity, which is that I got a kidney from a friend in 2006. So, in a sense, I'm certainly a poster girl for altruism. This wasn't even that close a friend. Although, now, of course, we're indebted to her forever and speechless with gratitude. Just a wonderful thing to do, but it doesn't happen enough. And tomorrow, at this time, 12 people will die because they didn't have a Virginia, that's the name of my donor. So, what I would like to see, and a number of my colleagues are working on this effort, we know that so many people are dying.

  • 11:14:36

    SATELWe know there's a thriving black market. Solutions that we've tried are inadequate thus far. So, I think we need evidence that incentives can work. And the kinds of incentives we're talking about here -- no one's talking about an unfettered free market or a contract between a buyer and a seller. We're talking about a third party, a government, a state or federal government, that will offer a reward in the form of a tax credit, a contribution to a 401K, funds that could be transferred to a charity.

  • 11:15:09

    SATELBut some sort of reward for people who would like to give a kidney and save someone's life.

  • 11:15:14

    REHMBut don't you already have a federal law in place that says one cannot be compensated for donating an organ, perhaps even providing a disincentive for exactly what you're suggesting?

  • 11:15:31

    SATELYes. Well, there is a law -- yes. The 1984 National Organ Transplant Act does prohibit what's called valuable consideration being exchanged between a donor and a recipient. So, one approach, of course, is to petition the government to allow pilot trials. In 2008, Senator Arlen Specter actually wrote a bill that, I thought was quite elegant, which declared that any kind of in kind incentive, not cash, that was given by a third party. Again, not between a donor and a recipient directly, that it should be exempt from the NOTA ban. But unfortunately, the bill was not submitted and Senator Specter, as you know, got distracted over the course of his term and changed parties.

  • 11:16:24

    SATELSo it sort of fell behind the stove, unfortunately. But, there have been efforts over the years to actually introduce incentives. A number of bills, starting actually in 1981.

  • 11:16:37

    REHMAnd over the last 10 years or so, haven't there been centers created so that people understand where they could possibly go to find a donor?

  • 11:16:54

    SATELWell, there's -- yes. I think there's a lot of education. I think we've -- we should, of course, continue to do it, but I certainly don't see continuing that as any kind of solution to this. So yes, people can -- well, you go on a list. Your doctor puts you on the list. There happens to be a website, this is a totally private enterprise, which I used at first, called matchingdonors.com. It's kind of J Date for people who need organs and people who are -- kidneys, and people who are willing to donate.

  • 11:17:26

    SATELAnd I actually thought that I had a date, so to speak, and -- but unfortunately, that gentleman dropped through and again, thank goodness my friend Virginia came along. But, you know, not only is the waiting list 100,000, it's estimated that another 80 to 100,000 people on dialysis have not even been listed.

  • 11:17:46

    REHMDr. Cooper, what do you make of the idea of, perhaps, some change to the federal law allowing some form of compensation?

  • 11:17:59

    COOPERWell, again, I appreciate the opportunity, particularly when we talked and that this being Donate Life Month. I think we have to be fair when we're using the term, such as we've tried to increase the numbers of organs through education. And I agree, I think the most important piece, when we leave today, is that there is a desperate need for ongoing education, in terms of organ donation. Who can be an organ donation? (sic) And who, exactly, you know, is appropriate for it? But I think, it's not really true that we've tried very hard.

  • 11:18:29

    REHMDr. Matthew Cooper is Director of Kidney and Pancreas Transplantation at MedStar Georgetown Transplant Institute. Short break. Right back.

  • 11:20:00

    REHMAnd welcome back. We're talking about kidney transplants, kidney donations. The fact of the matter is there are at least 100,000 people on a waiting list currently and nearly 2500 new patients are added to that list each month. Another stat, on average 14 people die each day waiting for a life-saving kidney transplant. And with me here in the studio, Dr. Matthew Cooper of MedStar Georgetown Transplant Institute, and psychiatrist Dr. Sally Satel. She is resident scholar at the American Enterprise Institute. She edited a book in 2009 titled "When Altruism Isn't Enough: The Case For Compensating organ donors."

  • 11:21:07

    REHMDr. Caplan, I'd be interested in your comments about changing that 1984 law somehow to allow some form of compensation to donors of organs.

  • 11:21:25

    CAPLANWell, Diane, I am so ancient that I was a witness at the 1984 hearings that produced that law, so I remember...

  • 11:21:33

    REHMAnd I probably talked to you right then and there.

  • 11:21:36

    CAPLANYou probably did.

  • 11:21:37

    REHMYeah.

  • 11:21:38

    CAPLANIn that legislation there were three considerations that led to the ban. One was there were brokers emerging who were disreputable. People were saying, I'm going to handle -- act as a middleman. And to be kind about it they were rather slimy and untrustworthy and they frightened many of the legislators in congress into thinking, we can't open a market here. We can't trust the people doing this. So that was one concern.

  • 11:22:11

    CAPLANA second was opposition from religious groups to exchange of money for body parts. Whether one agrees or disagrees, there are many groups, Catholic Church, many evangelicals, many, many religious groups that said look, if you pay for body parts we cannot participate in the world of organ -- donation organ selling. One can argue back and forth about what that means but if those groups withdrew from organ donation, you may not get more organs by paying for them, if you will. So that was a concern.

  • 11:22:49

    CAPLANAnd the last one was exploitation. There was always a concern that only the very poor would volunteer to sell an organ and that they would be out of choices. They would do it from desperation. They would kind of not really make a free choice. They would be forced by circumstance, poverty, desperate debt, whatever. And that while one understands their desire to get some money, you didn't want to give them choices that weren't real choices if they were driven to act solely out of desperation.

  • 11:23:22

    CAPLANSo those are kind of the parameters at the time that, if you will, were ethical signposts. Navigating amongst them today, if we start to think about where we might head, I think is probably the route we'd have to travel.

  • 11:23:37

    REHMAnd, Dr. Cooper, hasn't Georgetown MedStar and you actually been involved in some voluntary exchanges that have gone on at the hospital?

  • 11:23:53

    COOPERYeah, I appreciate the opportunity to explain many of the innovations that we look to really share with the rest of the country at MedStar Georgetown Transplant Institute. Unfortunately, I think some of the information that, again, is misrepresented or unfortunately is not enough education in society, is that an incompatible donor means an unavailable transplant. And unfortunately, I think we also need to appreciate that not all transplant centers are created equal. There are some that are more capable of innovating and of performing more challenging transplants.

  • 11:24:29

    COOPERAnd we particularly talk about incompatible transplants, probably what has driven this science further in the last decade or so is the ability to perform things we call paired kidney exchanges. So living donors who perhaps have a blood type incompatibility, as Dr. Caplan mentioned, or in fact have a positive cross match, no longer is that a reason to disqualify a donor and recipient pair from moving forward. Because we know one out of every three pairs that comes forward to us is going to have that form of incompatibility, whether it be blood type or immunogenetic.

  • 11:25:02

    COOPERAnd now we have very sophisticated databases both within our transplant programs and even, you know, nationally-based systems where incompatible pairs are pushed together in order to find those needles in haystacks for recipients who unfortunately their intended donor was not the right donor for them.

  • 11:25:18

    COOPERSo I think there's, you know, many more possibilities, as I mentioned before, in terms of trying harder to increase the numbers of donors, whether that be through living or deceased donors than in fact, you know, the public is perhaps not as well educated as we would think that it possibly could be.

  • 11:25:34

    REHMDr. Satel.

  • 11:25:36

    SATELI certainly agree, trying harder will get us more kidneys but again, we're talking tens of thousands. Now the points that Dr. Caplan made about the conditions that prevailed in 1984 is a good summary. What's important to keep in mind, though, is that the waiting list was zero then, which is not to say there weren't people dying of organ failure. That, in fact, was the whole purpose of the legislation. It actually created UNOS so that there was a national procurement and distribution system.

  • 11:26:07

    SATELBut in any case, the official list was zero. It's not 100,000. That concentrates people's thinking about innovations in different ways. Also, the system that I very broadly outline for you, sort of a third party in kind exchange where there would be a waiting -- excuse me, a waiting period. So that if you thought you were interested in participating in this, you'd have to wait six months to a year. You wouldn't be given cash. It's those kinds of -- it's those two things, in fact, that would really end up excluding desperate people.

  • 11:26:43

    SATELIt's okay that a low-income person makes a decision that this is in my best interest to give a kidney and help someone beyond imagining and benefit myself. That's fine. It's a desperate person who rushes into something and regrets it later that you don't want. And you can avoid that by putting -- building a waiting list and not giving cash.

  • 11:27:05

    REHMWhy is it that there are so few healthy kidneys from people who have died? Why is it that they perhaps have -- is it because the families don't want to make the donation? Is it because they, as Dr. Caplan has said, have strong personal or religious beliefs and simply don't want to donate?

  • 11:27:38

    COOPERWell, it simply is -- it truly is multi-factorial. I think that we also have to appreciate that our health care system has gotten better and better at taking care of individuals in the past who may have in fact been organ donors. A victim of a car accident or of other injuries, and that the majority of our suitable deaths, as we call for a potential deceased or a transplant are from elderly individuals who pass away from, you know, natural causes, cerebral vascular accidents. And therefore meet the criteria for organ donation for which not all do.

  • 11:28:14

    COOPERThat unfortunately some of those organs that would be potentially thought to be transplantable in fact when coming from someone in their sixth, seventh, perhaps even eighth decade, just would not be the best option for the recipient on dialysis, so we neither help the family who was interested in donating because the organs perhaps aren't transplantable and the recipient doesn't see the benefit of being free from dialysis (unintelligible).

  • 11:28:36

    REHMAll right. And taking a younger person who sadly may have passed away from an accident or something of that sort, how long is that kidney or those kidneys viable?

  • 11:28:54

    COOPERWell, certainly we know that shorter time with which the organ is removed from the donor and transplanted the better those results, both short and long term. But there is, you know, significant data that shows that organs can be placed in a cold profusion or hypothermic arrest for sometimes up to 48 hours. Now of course we very rarely get to that time point.

  • 11:29:14

    COOPERBut I think one of the things that sort of it calls for -- part of this discussion is, you know, there are centers that are very aggressive in transplanting deceased-donor organs. And there are very small centers that perhaps, because of the regulatory oversight that's necessary -- appropriately necessary to ensure that we're taking care of a very valuable resource, that may not be so comfortable in performing deceased-donor transplants, and certainly not aggressive deceased-donor transplants and some of the using of some of those older kidneys.

  • 11:29:42

    COOPERAnd so I think it speaks to specialization for transplantation. I just don't believe that every center around the country should be sort of provided the same resources, as it were, in terms of transplant resources as perhaps limiting the number of transplant programs we have around the country.

  • 11:30:02

    REHMI gather one suggestion that has been made to increase donations from deceased donors is to change the definition of death. Explain that, Dr. Cooper.

  • 11:30:18

    COOPERSo it's a very complex issue. And what actually constitutes when someone is declared quote "dead" and therefore able to donate their organs. It's a very -- at this point a very rigid definition. And it all is, again, in an effort to make sure that we are being very honest and transparent, particularly when our colleagues from the organ procurement organizations are approaching families about potential deceased donation, being certain that there is no question about the survivability of their loved one.

  • 11:30:52

    COOPERAnd so the definition is one where which we potentially have the ability to be a little bit more lenient, as it were, in what we are actually calling death or survivable illness so that potentially there may be more individuals who meet criteria with which we can pursue deceased donations.

  • 11:31:08

    REHMSo how would you change that definition of death?

  • 11:31:15

    COOPERWell, I think, again, it's...

  • 11:31:17

    REHMI realize it's very complicated and may come down to each individual, but overall how would you change that definition?

  • 11:31:27

    COOPEROh yeah, there's certainly many people much smarter than I that are actually looking at this on a very educative basis. But I think, you know, one of the things that we have to recognize is that, you know, irreversible injury, severe neurologic injury is, you know, unfortunately not under that definition of death. And there are some people that unfortunately -- some donors -- potential donors that unfortunately have such significant neurologic injury that we, at this point, are unable to approach for a deceased donation.

  • 11:31:55

    REHMI see.

  • 11:31:56

    COOPERWe have other methods with which we can retrieve those organs but it limits...

  • 11:31:58

    REHMOkay. So if I can translate then in my own words, you're saying someone who is brain dead but the organs continue to function. The heart is still beating.

  • 11:32:14

    COOPERWell, again, those are -- that's the ideal situation, someone who has met the criteria for brain death but still has ongoing organ function. That's the ideal donor that really, I think, has been demonstrated to be the best type of donor. There's also donors who donate following cardiac death, which is again a whole very complex process that we have again progressed. And really has only come into fruition over the last decade. Again, another instance of how we've looked to try and increase the numbers of organs for donation that, again, a decade ago would've been prohibited.

  • 11:32:46

    REHMDr. Caplan, how do you feel about changing the definition of death? And before you respond, let me just say you're listening to "The Diane Rehm Show." Dr. Caplan.

  • 11:33:04

    CAPLANNot going to happen, Diane.

  • 11:33:05

    REHMNot going to happen.

  • 11:33:06

    CAPLANWe -- not going to happen. We just had a case -- listeners will know, you will know -- of a little girl out in California declared brain dead, verified brain dead whose parents took the body out and kept it on life support. Her name is Jahi McMath. That case, while certainly involving what I'll describe as some fringe behavior, set off so much discussion, so much distrust of the current standard of brain death that the idea that we're going to move that definition -- politically move the definition at the state level to be more "liberal" quote unquoted, that will not happen. There isn't enough trust right now in hospitals, in doctors to honestly pronounce death.

  • 11:33:53

    CAPLANThat is to say there's a fear. If I sign my donor card are they going to be quick in terms of taking my organs? If I hear the term brain death does that mean true death or is it the brain is dead but the body is alive and it might come back? What I think has some possibility is to expend who it is that can donate a kidney. We heard Matthew say that the ideal situation or most donors come from those on life support, and that's true when you're talking cadaver donation. Most of that takes place in an intensive care unit.

  • 11:34:33

    CAPLANYou might be able to obtain kidneys in the emergency room or in other settings where people die but they're not on those machines. They're certainly dead by the traditional heart and lung standard but we tend to focus our efforts on getting organs now in that ICU on-life-support situation. Diane, that's a very rare situation. Even though a lot of people sign donor cards, most of us don't die that way.

  • 11:35:00

    CAPLANSo if we could say we're going to try and take a kidney from someone who has died not on life support, it's certainly a bit riskier, a bit more dangerous for the recipient in terms of the quality of the organ, but nonetheless, that might be something we ought to pursue. And let me add one other idea. Instead of arguing that we're going to change the definition of death to get donors, which, I mean, you know, it's not going to happen, we could change the default.

  • 11:35:31

    CAPLANI'm a proponent of moving to default to donation. What I mean by that quite simply is, instead of asking people to sign cards to become donors, I think we, in the cadaver area, might move to a system that says we presume you're a donor. We see polls and surveys that say most people say they want to be a donor. And then ask you to sign a card or go into the computer registry to say if you don't want to be a donor. And your family could certainly bring that up too. So it's shifting the presumption and that might help a bit.

  • 11:36:05

    REHMDr. Satel, what do -- how do you respond?

  • 11:36:10

    SATELWell, I'm glad Dr. Caplan said it might help a bit. I've heard other people who are much more enthusiastic about presumed consent. And I think that enthusiasm is misplaced. For one thing, as he also mentioned, very few people die of brain death in such a way that their organs are preservable -- excuse me, usable. And the estimates are maybe between 10,000 and 13,000 a year. And that's not nothing.

  • 11:36:41

    SATELSo at the margin if those -- if the family's consented -- because most presumed consent is called soft presumed consent, meaning the family can still override the hospital's efforts to let's call harvest the organs if they don't want to. Some countries have hard presumed consent. Actually Belgium and Austria are known for that. And...

  • 11:37:04

    REHMWhich means it's the donor's decision.

  • 11:37:09

    SATELWell, you have to opt -- remember you have to opt out if you don't want it.

  • 11:37:15

    REHMRight.

  • 11:37:16

    SATELSo it's presumed you want to unless you've indicated otherwise.

  • 11:37:17

    REHMI see.

  • 11:37:18

    SATELAnd the family cannot come along and say, oh I don't want that body touched. And that's more complicated.

  • 11:37:24

    REHMDr. Sally Satel is a psychiatrist, resident scholar at the American Enterprise Institute. Short break. Your calls when we come back.

  • 11:39:59

    REHMAnd now joining us as we talk about the shortage of kidneys available in this country alone, 100,000, and people are dying every day because of that shortage. Joining us now, by phone, Sigrid Fry-Revere. She's just released a book about Iran, the only country in the world that permits the buying and selling of organs. It's also the only country in the world that does not have a kidney shortage. Thank you for joining us. Iran, as the only country in the world that compensates donors for kidneys. Tell us why, Sigrid.

  • 11:40:54

    MS. SIGRID FRY-REVEREThank you, Diane. If I may, based on the discussion so far, I have a book called "Defining Death," that's coming out from Scholastic Press any day now, that addresses many of those issues that were just discussed, if any of your listeners are interested.

  • 11:41:10

    REHMOh, good.

  • 11:41:12

    FRY-REVEREAnd I also think it's interesting that Sally pointed out that we might get 10,000 more kidneys or donors if we go to a system of presumed consent, because I work with the Washington Regional Transplant Community, as the ethicist on their Organ and Tissue Advisory Committee. And we regularly review all the cases where we tried to convince families to donate and why it didn't work.

  • 11:41:41

    REHMYes.

  • 11:41:42

    FRY-REVEREAnd we are trying to get kidneys. We have essentially hospitals fighting over kidneys, from 90-year-olds, from people who have hyper-tension, from people who died of cancer.

  • 11:41:53

    REHMYes, I understand. I really would appreciate your talking about the system at work in Iran and how you went about doing your research.

  • 11:42:08

    FRY-REVEREOkay. Well, I went to Iran, more or less, undercover. I didn't get a visa to do the research I wanted, but I went -- got invited to a conference where they process visas as a group. And then once there, I got permission to stay and do a lecture tour, which I did with Dr. Bastani, who's a Nephrologist, so a kidney specialist, who teaches medicine at the University of St. Louis Medical School. So he took a sabbatical and came with me. The important thing about Iran is that they have 30 years of history, experimenting with compensating donors.

  • 11:42:52

    FRY-REVEREAnd I visited six regions and found very different things in the different regions. For example, (unintelligible) actually bans payment. So, any data coming out of (unintelligible) is more or less the same as data coming out of any other country that bans sales. (unintelligible) , there's a doctor named Zargushi (sp?) who writes a lot about what's happening there. That area is so resource poor, it probably shouldn't be doing any transplants at all. But of the six regions I visited, Mashad and Isfahan (sp?) had very impressive systems.

  • 11:43:32

    FRY-REVEREAnd the most important thing is that they moved from a grey market -- it was never a illegal to buy and sell organs in Iran. So they moved from a grey market to a regulated market, to better regulations. And one of the things that they did that was a turning point is they licensed NGOs. So, Non-Governmental Organizations, charities run by volunteers, to do the donor and recipient matching and to provide services. So those organizations that are staffed by people who are donors and recipients themselves, who work on a volunteer basis, in the good regions, like Isfahan and Mashad, treat both donors and recipients equally as their clients.

  • 11:44:25

    REHMAll right. And how much are donors paid for the kidneys they donate?

  • 11:44:33

    FRY-REVEREWell, people always ask that, and I think the important thing to realize is that in the history, Iran developed more and more and more benefits and money was part of that. You're talking healthcare vouchers, dental care, eye care, job services, small business loans, debt counseling, education and other social services. All of which, it is illegal for a charity to give donors in this country, as part of the benefit for donation.

  • 11:45:06

    FRY-REVERENow, a transplant recipient can get those things in this country, but it's illegal to give them to donors. And my organization, Stop Organ Trafficking Now, is in the process, with the help of Dick Steen Shapiro (sp?) in D.C., of lobbying Congress for a new act that will remove the financial disincentives to donors.

  • 11:45:28

    REHMI see. And where does the money come from?

  • 11:45:32

    FRY-REVEREExcellent question. Some of it comes from the national government. Some of it comes from the recipient's family, if they can afford it. But, most of the money actually comes from the NGOs. They are charity organizations, so they put together packages. They assess a donor's needs and a recipient's needs, and they see the two people as saving each other. So they create packages that specifically are what the donor needs to improve his or her life.

  • 11:46:06

    REHMAll right. I...

  • 11:46:07

    FRY-REVEREAnd then, they also have the option of knowing each other or not. So, it can be like open adoption. If neither wants to know the other party, it's anonymous. If they want to know each other, they can.

  • 11:46:18

    REHMAll right. And I know Iran is a very different country from our own. How successful do you believe you might be?

  • 11:46:30

    FRY-REVEREWell, I don' think, you know, looking at Iran, I think -- one, we need to focus on the regions where Iran has been successful in solving its problems.

  • 11:46:39

    REHMYes. Of course.

  • 11:46:41

    FRY-REVEREBecause a lot of people keep mentioning data that come out of areas that I wrote about as being disasters. And the second thing is, you know, they have solved a problem, and the only country in the world to have solved a problem we haven't solved. In Isfahan (sp?) and Mashad, (sp?) there are waiting lists for people to be donors. Just because we don't like Iran, we shouldn't be afraid to learn from them.

  • 11:47:11

    REHMAll right. Thank you so much for joining us. Sigrid Fry-Revere. She's just released a book about Iran, the only country in the world that, in some areas, permits the buying and selling of organs. And she has a new book coming out on defining death. All right, we're going to open the phones. 800-433-8850. First to Matthew in San Antonio, Texas. Hi, you're on the air.

  • 11:47:49

    MATTHEWHi, Diane. And thank you for taking my call.

  • 11:47:51

    REHMSure.

  • 11:47:52

    MATTHEWThis is a personal issue, so I donated to my mother in two thousand, or two years ago, 2012 at the beginning of the year, and I was fortunate to get past the blood work and all that stuff to be able to donate. She was maybe a few months away from dialysis, and if, you know, your panel knows, if anybody has experienced somebody, dialysis, you know, your life expectancy just gets worse and worse the longer you're on it. So, you know, I'm speaking as an advocate.

  • 11:48:22

    MATTHEWYou know, I had mine at the university transplant hospital. I had a donor advocate, I had all the necessary care that I could have.

  • 11:48:32

    REHMExcellent.

  • 11:48:33

    MATTHEWI was well taken care of. My mom's kidney functions are as though she's a teenager. So, I'm really, really, you know, grateful for this talk. My question was, you know, unfortunately, you know, incentives, you know, maybe have to be a part of this. Not simply saving a family member, something like that. I understand those barriers. But is there a lot of problems with the insurance covering this and will the Affordable Care Act help with this? Possibly increasing the amount of transplants taking place?

  • 11:49:10

    REHMAll right. Dr. Caplan, what's your thought?

  • 11:49:14

    CAPLANWell, interestingly enough, the kidney transplant world does have a government program to pay for it. The health reform probably isn't going to do much there. Finding coverage for donor costs usually can move over to the recipient and their insurance, or part of the program may help. There are obstacles out there for donors, though. And this may be an area for common agreement. Donors incur costs like loss of time from work. Donors incur -- living donors, I mean, incur costs -- babysitters, they have potentially a lack of insurance in terms of their healthcare.

  • 11:49:58

    CAPLANMaybe Obamacare will help that a little bit, but if they don't have it, they need to be sure that they're not gonna be left in debt if they have a problem or an adverse event. So, while we can argue about the power of incentives to really produce a major number of kidneys from living persons, we shouldn't have obstacles to being an altruistic hero. And there are fiscal obstacles out there.

  • 11:50:23

    REHMIndeed. All right, let's take a caller in Indianapolis. Hi Elizabeth.

  • 11:50:30

    ELIZABETHHi. How are you?

  • 11:50:31

    REHMI'm fine, thanks. Go right ahead.

  • 11:50:36

    ELIZABETHI'm a student at the Indianapolis -- or, Indiana University School of Nursing. And we actually had to do a dialectical argument on the opt out system. My question to you is, what do you find to be the ethical dilemma in the opt out system, such as Spain has, where their kidney shortage is next to nothing now.

  • 11:50:58

    REHMDr. Caplan?

  • 11:51:00

    CAPLANWell, I'm not sure their shortage is next to nothing, but they certainly have had a lot of success. And by the way, not just by passing a presumed consent, or as I prefer to call it, a default to donation policy, but also making sure that every hospital has a well educated staff that understands organ donation, and putting some oomph behind the enactment of the law so that families and the public understand what's going on. You don't just pass the law and change behavior, so to speak. Major ethical objection? I don't trust that my objection is gonna be heard.

  • 11:51:35

    CAPLANSo, people worry about that. I think the system can handle it with computer registries, giving families the right to say no if they have some reason to do that. But, to me, it's just as protective of your right to be a donor, or not be a donor, if we say you have to opt in as we say you have to opt out. I think, either way, you get to make a choice. I think we don't really want to make people feel coerced or forced into doing it, but it's just as reasonable to make the default you do want to be a donor.

  • 11:52:10

    REHMAll right. And here's an email from Paula in Jacksonville, Florida. She says, you don't give up a kidney and just get up and go to work the next day. Not everybody gets paid sick leave. So, please discuss that, and maybe again, this could be where the Affordable Care Act comes in.

  • 11:52:35

    COOPERI think it's a great question. I'm glad, actually, someone brought it forward. I think we're minimizing the fact about a living donation procedure is not just a simple surgery.

  • 11:52:45

    REHMSure it isn't.

  • 11:52:46

    COOPERWe're talking about removing a vital organ from an otherwise healthy individual, who has no reason to be in that operating room besides their desire, currently, in the United States, to help someone else out. And I think, you know, the point that we can't gloss over is, again, as I said in the beginning, our efforts in trying to increase numbers in living donation, are we really trying and not really making enough efforts in removing those disincentives? There's a lot of potential to invest in removing those disincentives that may potentially bring our living donor numbers significantly.

  • 11:53:17

    REHMAnd you're listening to "The Diane Rehm Show." And to Martha in Grand Rapids, Michigan. Hi, how are you?

  • 11:53:31

    MARTHAOh, I'm fine. Thank you for taking my call.

  • 11:53:34

    REHMSure. Go right ahead, Martha.

  • 11:53:37

    MARTHASure. Yeah, so I want to -- well, my story is from Grand Rapids, Michigan, and I donated altruistically two years ago, at the Saint Mary's Hospital here in Grand Rapids. And it's becoming one of the, I think, premiere kidney transplant units in the country. The interesting thing for me was, I guess that I wanted to say, is that I had tried the same hospital about three years earlier and had been rejected because of the skepticism over anonymous altruistic donors.

  • 11:54:18

    MARTHAAnd then I called again, a couple years later, talked to the same person, and they had just taken their -- they had just successfully had their first anonymous altruistic donor, and after about a year -- well, after all the testing you have to go through...

  • 11:54:36

    REHMSure.

  • 11:54:37

    MARTHAI was accepted and successfully donated. And I wanted to also say that not a penny came out of my pocket. It was all covered by recipient's insurance. And -- so, that's my story.

  • 11:54:55

    REHMAll right. And I thank you for your donation. I gather you did do it anonymously.

  • 11:55:04

    MARTHAYes.

  • 11:55:05

    REHMDr. Satel.

  • 11:55:06

    SATELWell, this lady, and thank you so much, is one of about 100 so-called good Samaritan donors every year. And honestly, there's a special spot in heaven for them. But what this lady experienced is not that uncommon, which is a kind of suspicion. It's sort of ironic. There's so much emphasis on the gift of life and the narrative of the gift, but there's actually often suspicion surrounding people like her, who want to do the ultimate in altruism. And they're often given the third degree, and sometimes even rejected.

  • 11:55:43

    SATELAlthough, hospitals are getting much, much better over the years, at accepting those types.

  • 11:55:47

    REHMDr. Cooper.

  • 11:55:48

    COOPERWell, I wouldn't choose the word suspicious. I think it's looking to protect the safety of that individual. Again, there's a lot of things that we can potentially work towards improving, in terms of optimal outcomes for donors. But, we can't predict everything, nor can we absolutely assume that everything in an operating room is gonna go safely. And so, I think transplant programs, as mentioned in the past, are built upon the trust with the public. And the number one people that we certainly want to garnish trust with is someone who comes out of the goodness of their heart and says, I wish to do something kind for another individual, with no obvious reward.

  • 11:56:27

    COOPERWe have an obligation to make sure that that is a safe thing for that recipient.

  • 11:56:30

    REHMIndeed. And so that's why, that's why there may be some time necessary.

  • 11:56:32

    REHMAnd of course, the after effects for the donor are really significant. And it's a much more serious operation for that donor…

  • 11:56:44

    COOPERAbsolutely is.

  • 11:56:45

    REHMThan it is for the recipient. Want to thank you all so much. Dr. Matthew Cooper of MedStar Georgetown Transplant Institute, Dr. Sally Satel, a psychiatrist, a kidney recipient from a dear friend who donated to her and Dr. Arthur Caplan. He's at New York University's Langone Medical Center. Thank you all, and thanks for listening. I'm Diane Rehm.

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