 Our speaker today is Dr. Laney Ross, who will speak on the topic of pediatric transplantation, donors and recipients. Dr. Ross needs no introduction, but that doesn't mean I won't give you one. Dr. Ross is the Carolyn and Matthew Bucksbaum professor, the associate director of the McLean Center and a professor in pediatrics, medicine, surgery and in the college. Dr. Ross also serves as the co-director of the Institute of Translational Medicine here at the university. Her training was medical school at the University of Pennsylvania, residency at CHOP in Columbia, and then she wrote her PhD at Yale, PhD in philosophy. At the University of Chicago, many of you have worked with Dr. Ross and you know her extraordinary capabilities as a mentor and teacher. She serves on the secretary's advisory committee on human research protection and on the American Academy of Pediatrics section on bioethics executive committee as its chair. It's a great delight to invite and welcome Laney to give today's talk. Thank you. Thank you very much. I wanted to begin with two things, first to acknowledge the two students and Dr. Thistlethwaite who worked with me on this project. I don't know if Chris or Will were able to get out of their clinical responsibilities. And I wanted to start though with a question. So in kidney transplantation, are there more pediatric recipients or pediatric donors? So how many of you think that kids in a sense take more than they give or do they give more than they take? So how many think there are more pediatric recipients? And how many think there are more pediatric donors? So we're sort of evenly split and here's the answer. In 2011, there were 843 pediatric deceased donor kidneys making up 11% of all deceased donors. There were 454 pediatric deceased kidney recipients making up 4% of recipients. Hence the reason to discuss pediatric deceased donor allocation issues from both perspectives. Just for those interested, there were zero pediatric living kidney donors, that has not always been the case. And there were 302 children who received kidneys from living donors. So here are my four objectives to discuss the policy issues raised by giving minors special priority in deceased donor solid organ transplants. And then to discuss the ethical and policy issues related to elective deceased donor transplants in minors. And then with regards to pediatric solid organ donors, I'm going to really talk about allocation issues with pediatric deceased donor organs. I doubt we're going to have time for me to talk about the whole issue of whether children should ever serve as solid living organ donors. So I'm probably just going to focus on these three. So let me begin first with pediatric recipients. So the first question is should children be given priority for deceased donors and then priority for early allocation and priority for the best quality organs. And so a policy was written in October 2005 that UNOS implemented which basically said that all renal allografts from young deceased donors, less than 35 years of age, would be given preferentially to local pediatric patients less than 18 years. Although if a local suitable pediatric candidate couldn't be found the organ would be offered to a local adult candidate. And the policy was intended to reduce waiting times for pediatric candidates and allocating ideal deceased donor kidneys to them. Now I should begin with my real bias. I'm a pediatrician so I'm always wanting to get the best for kids. So clearly I was in favor of a policy that was going to do that and there are actually clinical reasons to justify my bias. One is that children don't grow and develop appropriately on dialysis so that if they're in chronic renal failure they really do need kidney transplant. But why 35? Why did they pick the age of any deceased donor under the age of 35? And here I have a graph which shows you that the quality of kidneys from donors over the age of 35 have a worse graph survival as time goes on and clearly kids are going to need kidneys that are going to last for decades. And so it makes sense to give them kidneys that are going to last as long as possible so that we don't have to start talking about retransplanting them in their 20s but maybe in their 30s or 40s. I also just wanted to point out the impact of SHARE35. So before we had this rule what you saw was that kids were getting kidneys from everywhere. And in fact if you just look under the bay so up to here they were getting what we now call ideal donors but they were actually getting a large number of kidneys from people 35 to 49 and even some of the older donors from 50 and up. And now under the new policy you notice two things. One is they got more kidneys in the same five year time period but also that virtually all of the kidneys they got were from donors under the age of 35. The yellow representing a small number of deceased donors from 35 to 49 year olds and these may be individuals for example who had high sensitization and therefore weren't able to match easily to a kidney. So the policy did what it wanted it gave the best kidneys and it gave more kidneys to children. And here in fact if you look is another way of seeing this data and what we did here was look at time from weight list registration and again if you look you're going to see two things. So 2002 was just a year we picked that was going to be pre-SHARE35 and 2007 post-SHARE35. And what you will see is that within six months after SHARE45 only 43% of the children who had been weight listed were still waiting and that it was down to only a quarter by one year versus there was still a third waiting for kidneys pre-SHARE35. So again they were getting them more quickly. You're also going to notice one other change though which is that here when you see where they got kidneys from the children in 2002 got 301 of their kidneys in the first six months from deceased donors and got 83 or about a quarter of them from living donors. And here in 2007 they got 278 transplants and 86 from living donors. But overall in the end for the living donors in 2007 they look like the same they're actually pretty equivalent in the number of numbers. So not too much of a fall in 2007 in the number of living donors. But I also wanted to show though some of the unintended consequences of SHARE35 and there is actually a relative drop in the number of parents who continue to donate to their children. And in part you might say why is this and the answer is if I'm promised a great deceased donor within one year I might as well save my kidney for when my child needs to be re-transplanted. This was not anticipated at the time of writing the deceased donor policy for SHARE35. And why this becomes a problem is this becomes a problem because there are two concerns. One if kids are taking more deceased donor kidneys and taking the best kidneys then as there's less kidneys for adults then adults are going to have to start looking for living donors. And in a sense if you ask me would I rather a 15 year old get a living donor or a 65 year old get a living donor the answer is clearly I want the 15 year old because again those are the ideal donors they're going to last even longer than the best deceased donor and so it will reduce the need to re-transplant. But from a parent's perspective you can see why they might go the opposite way and think to themselves when they need to re-transplant they're not going to have priority so let me save my kidney for that time. And that's what happened and this is important because as we're talking about new kidney allocation policies currently in the United States there's this move to give the best kidneys not just to kids under 18 but to really give some of the best kidneys to even young adults up to 30 or 35 and what that might do is decrease the number of living donors overall. 75% of all transplants in young adults under the age of 30 come from living donors and so either we're going to have less overall number of kidneys because the living donors are going to stop donating or we're going to be transferring those living donors to older people who might not otherwise get a deceased donor and that would be quite inefficient. But one question is, is it working in the sense are there graft surviving as long as we had hoped and I just want to point out this one piece of data which shows that the one year and five year allograft survival among recipients of kidney transplants from ideal donors and what you're going to see here is that the number of grafts functioning at five years really plummets in that adolescent to young adult group. So as we give them better kidneys they're not doing so well with it and the reason is because they are the least compliant with their immunosuppression and so in a sense are we really getting the efficiency that was hoped for and in fact in this article by Levine et al. this is the quote the allocation of ideal donors to adolescent recipients may not maximize graft utility reevaluation of pediatric allocation priority may offer opportunities to optimize ideal renal allograft survival so there's at least some people who are trying to push back on the grounds of poor compliance. Again my bias being a pediatrician is that clearly I support chair 35 but I think we have to acknowledge some of the issues and acknowledge the unintended consequences of reducing living donors and part of this is we have to remember that UNOS controls allocates deceased donors but in a sense as a living donor you get to choose who you're going to give to and so the more we give priority to young children but also young adults of living donors we may actually reduce the number of living donors overall or change it to be giving it to older people who really don't need a kidney that will last them for 25 or 30 years so I just as I said the point of this whole part was to really think about the unintended consequences that as we give all these donors we're going to decrease the number of living donors the next part of the talk then is to look at something that very few people think about is this notion of elective organ transplantation in children so what is an elective transplant? It's the practice of offering an organ transplant when an alternative procedure exists and there are two good examples in the literature one is hypoplastic left heart where children can undergo a three stage Norwood procedure and the other or they can get a heart transplant and the data mostly from Alex Kahn shows that people are offered usually one or the other depending on the site where their child happens to be born and diagnosed and yet their results in morbidity and mortality are actually quite similar another place where we have elective transplants and the one I want to talk about today is in liver transplant where some children with metabolic conditions for example maple syrup urine disease they can be treated by dietary means or liver transplant the problem with the dietary means is that if they have an event it can be quite catastrophic from which they may not recover particularly cognitively and so in some ways the liver transplant reduces the fear of a protein overload in these children and this is going to become a bigger and bigger issue as we continue to expand newborn screening because we're going to be picking up more children asymptomatically with some of these conditions who may be in a sense the ideal transplant candidate so the procedure is elective and we can debate whether we're talking about in hypoplastic left heart or maple syrup urine disease whether the alternative treatment or the transplant is better but the point of calling it elective is that there are some children who need a heart transplant or a liver transplant who don't have an alternative right so they're going to die on the wait list while we're going to give some priority to these children and we need to ask ourselves is this fair and as I pointed out though at this point nor would it be equivalent the data is still coming in about which is better from an individual child's perspective a liver transplant or dietary treatment from maple syrup urine disease so traditionally this is the way we treated children with maple syrup urine disease in order to preserve normal function of the CNS in an ill newborn ECMO may be necessary and then lifelong dietary restrictions to maintain blood metabolic concentrations close to normal and throughout life there's aggressive interventions every time they have an illness in order to rapidly reverse any metabolic derangement but the real concern then is that these kids can stroke out if not aggressive enough and so despite aggressive treatment despite knowing how to take care of these kids many kids with classic maple syrup urine disease have a poor intellectual outcome sometimes because of delay in diagnosis sometimes delay in starting treatment sometimes because of acute metabolic derangement and that their metabolic control tends to deteriorate with age so what are the outcomes with liver transplant and maple syrup urine disease it's interesting that the first report actually was done sort of accidentally so there was a seven and a half year old French gypsy girl with maple syrup urine disease and terminal liver failure caused by hepatitis A viral infection and she got a liver transplant and both did quite well from the hepatitis perspective but also in a sense cured her maple syrup urine disease and after that there was another decision then made to actually transplant a two-year-old Spanish boy who had frequent metabolic decompensations and in 1997 there was a two-year-old girl here in the United States who had a vitamin A intoxication her parents had given her overdose of vitamin A thinking this would help treat her liver problems and so again not only treat reversing the vitamin A problems but also curing her maple syrup urine disease and it was because of several of these case studies that Strauss et al. at the special clinic in the Amish community out in Pennsylvania worked with the Children's Hospital of Pittsburgh to actually put these children on the liver transplant wait list at the Children's Hospital of Pittsburgh and they were able to actually argue for high prioritization due to the neurologic burden of the disease particularly if there's decompensation and as one would imagine is that patients with hepatic-based metabolic disorders will do really well with a liver transplant it reduces their acute metabolic decompensation but it's also that they're very healthy in general when they go into having a liver transplant so at the clinic for special children as I mentioned they did it and they actually looked at it from a cost perspective because this is the Amish community which doesn't have health insurance but pays in cash for their health care and they came to realize that it was actually financial not only just from a medical perspective but they also thought that economically it was saving in order to have a liver transplant and part of their argument about that was they looked at the number of hospitalizations for acute metabolic decompensations for their children so what's the obstacle to performing liver transplants in all patients with maple syrup urine disease and part of the issue is going to be the scarcity and the fact is that they have an alternative treatment and we're going to have to ask ourselves whether it makes sense to be giving people transplants when they have another alternative I point this out because the year 2001 has two interesting facts that happen one is and this is for all living donor liver transplants for both adults and children and you'll see that in 2001 we have 524 living donors and the numbers in a sense decrease thereafter and still haven't recovered and probably never will and you'll also notice that in 2001 we peaked in the number of deaths and the number of deaths have been going down since 2001 and there are two facts that happened in the year 2001 the first was the death of a living donor Mike Hurwitz which really put a damper on the whole issue of doing adult to adult living donor the reason for the decrease in the weight list was also a change in the liver allocation policy and so something called meld and pelled and as you can see it's actually been quite effective even though the number of livers that are available really hasn't changed over the time the number dying on the weight list nevertheless people with metabolic disease would have very low pelled scores and so wouldn't be eligible and yet there are reasons that you can go to a region to ask for exceptions and metabolic diseases have been considered one of those exceptions so that they would be eligible for rather high priority in giving a liver transplant so looking at the UNOS data looking at who gets a deceased donor liver transplant what you can see is just to give you an idea from data from last month is that the total being weight listed for children under the age of one is only 38 children and actually a pretty small number overall for all children you can see that the number of children who received a deceased donor liver transplants in 2012 a pretty large number the number who received living donor transplants and again as I said actually it's smaller than I would have thought it's only 40 of the transplants of living donor pediatrics but you could also see the total number who died in 2012 while waiting on the liver transplant so it's this group in a sense that there are 12 dying on the transplants and if we're going to have a dozen or so children every year born with maple syrup urine disease around the country the question is should they get priority when other children are dying on the weight list but so you have this issue because from the particular child's perspective it's probably better to get a transplant than dietary management although as I said the data aren't fully in yet in our western bioethics approach we think of it as our obligation to the individual patient which would then suggest that we should be offering liver transplants to these individuals and that if offered it will probably be accepted but one could imagine a community deciding you know what there is an alternative and the alternative is dietary and basically saying that we're not going to be transplanting children with metabolic conditions unless in a sense they have a living donor I actually don't support that but I do think we need to think about what our policies are going to look like as we increase the number of metabolic conditions that we're going to be identifying in early childhood through newborn screening that this issue is not going to get smaller but it's going to grow and it's going to require that you know come up with policies about thinking what type of priority if any that they want to give these children so those are two issues about children being organ recipients I now want to look at pediatric donors depending on the time I'm probably only going to focus on children as deceased donors but if there's time we can also talk about when if ever should children serve as living donors so starting with allocating pediatric deceased donor kidneys so currently as I showed it represents over 10% of the total supply of U.S. deceased donor kidneys 90% of pediatric donor kidneys actually go into adult recipients the majority are aged 35 to 49 and in fact a third of these kidneys are transplanted into adults over the age of 50 so pediatric deceased donor kidneys are actually quite important and so one question is this a good use of pediatric deceased donor kidneys does it make sense to be putting in these small kidneys into larger individuals so just to give you an idea giving you a graph from over 10 years data and I see Will Parker made it and he's the one who actually made this graph what you can see is then so these are all pediatric kidneys from different ages 0, 1 to 5 this means single kidney transplant these mean on block and we'll be talking about that so this is giving to an adult a single kidney from a 1 to 5 year old versus giving them both kidneys from the same donor 6 to 9 and 10 to 17 year old and as you can see there are a lot of kidneys being pediatric kidneys being transplanted into adults with the majority in the 35 to 49 year old range so fact 1, old pediatric kidneys are not the same and what I want to focus on for right now is the case of the very young donor so those less than or equal to 5 years of age and here is an important graph which shows looking just at 1, 2 and 3 year old kidneys and their graph survival over time versus the 0 year old kidneys so clearly the 1, 2 and 3 year old do pretty similarly and do much better than a kidney from a donor less than the age of 1 year the next fact is that very young donors as I mentioned can either be allocated as single kidneys or on block and as you can see here is donors up to the age of 5 and the green is the number of kidneys that are transplanted on block and the purple are the number that are transplanted as a single kidney and so as we get older and as their children's weight get higher you see that it becomes more common to do a single kidney transplant but does it make sense to be doing all of these kidneys as an on block procedure? and so here's our data looking at again with the 0 kidneys doing worse but what you can see here is that the 10 to 17 year old kidneys which are really considered ideal kidneys they look sort of like the 18 to 35 year old those ideal deceased donor kidneys what you see is the 1 to 5 year old on block kidneys have a little bit of a problem right at the start in working but once they start working their long term outcomes are as good as the 10 to 17 year old kidney and compare that though to the single kidney which does approximately 10 percentage points worse over 5 years but here's the problem so I acknowledge that given the choice everybody would want a 1 to 5 year old on block kidney but if we can save two lives with the first live having just a 10 percent lower 5 year survival does it make sense to be giving both kidneys to one individual or should we be splitting them always and we'll ignore the under one age kidneys because on block and single they do much poorer than all the others so historically we think that it's important not just to look at how do 1 to 5 year old kidneys do but to really look at the difference between on block versus single because those on block kidneys really do as well as the ideal donors and to actually split out the zeros because when transplants urgency the data from young children under the age of 5 it looks much worse because you're adding on those 0 year old donors who we know are actually quite different than all the other deceased donors under the age of 5 and so here it compares all the pediatric kidneys again to the ideal adult donors and what you see is here is the pediatric kidneys and here is why am I not seeing my 18 to 34 year old donors because the lines totally overlap so this is actually where you find the 18 to 34 year old donors and the 10 to 17 year old donors and again the 1 to 5 year old is slightly worse and as you can see here are some of the pediatric kidneys they actually do a lot better than the 50 to 59 year old and the 60 plus donors and the 35 to 49 year olds doing as well as all of the other pediatric kidneys including the 35 to 49 year old donors which is the red looking quite similar to the green line which are those single kidneys from 1 to 5 year olds so really questioning whether we can justify giving these kidneys out on block so by allocating kidneys from donors age 1 to 5 on block the total life years gained by the system goes down they have somewhere between as I said a 7 to 10% decrease 5 year survival overall so one question is well we will share 35 shouldn't we just give all pediatric recipients on block kidneys from donors less than the age of 5 years and one of the things you saw from the data is most pediatric donors do not go to pediatric recipients and so given that since we're giving lots of adult 35 to 49 year old kidneys and these single 1 to 5 year old kidneys look the same it might make sense for us to be dividing many more of them and at least increasing the number of transplants that can be done in fact of the 1122 on block kidneys done over the decade only 52 of them went to pediatric recipients now the 0 year old kidneys do much poorer and so I don't think the arguments about on block and single really hold for them currently the decision on how to procure kidneys so how you take it out of a deceased donor is left to the transplant team in Euro transplant it's required for example that procurement occurs on block for donors under the age of 2 for donors between the age of 2 and 5 it can be recommended that procurement occurs on block that doesn't say how it's allocated even if it's procured on block you can still allocate them singly but it may be better to determine allocation as single kidney transplants versus on block based on weight rather than age is one concern but also just the whole concern of whether it makes sense to be doing on blocks at all fact 3 about deceased donor kidneys is that these donors less than 1 year of virtually all transplants on block and yet they still do substantially worse and so part of their problem is really that they just have a high 100 day risk of graft failure but ultimately they start to perform as well as organs from candidates over the age of 50 which compares in the kidney world to those kidneys that are currently labeled extended criteria donors and in fact this is a comparative graph which looks at just the 100 day survival and as you can see the ideal donors which are 18 to 34 and that to 10 to 17 year olds look exactly the same both at 100 days and at 5 year survival those 1 to 5 on blocks 2% lower in the first 100 days so they have a slightly increased graft failure right at the beginning but look exactly the same at 5 years and so they might be almost too good to be giving out on block then when you look at the other children slightly poorer in their 5 year survival compared to the ideal kidneys the 1 to 5 single kidney again slightly poorer of first 100 days but looking just like a 35 to 49 year old kidney donor and most people would think that's a pretty good deal if they got a 35 to 49 year old healthy deceased donor with the zero year olds looking more like their older compatriots from the age of 50 and 60 plus so this is the interesting thing which is it depends what type of better you are because so the dotted gray line is the 50 to 59 year olds which clearly do better than either the zero year old donors for at least at the beginning and clearly do better than the 60 year old donors but the betting question is so they do really poorly in the first 100 days but after that they're actually better than many of our extended criteria donors so the question would be now knowing the data if offered and if offered and particularly the typical individual accepting an extended criteria donor is going to be someone over the age of 60 which do you take? do you bet on the short term issues or do you go for the long term and so I think it actually raises some interesting issues that haven't yet been addressed in the literature so just food for thought which would you prefer given the fact that you know that you'll have a bigger risk up front if you take the zero year old kidney but in the long term it may turn out to be better so to conclude for this part of the talk shared 35 refers to old kidneys from donors younger than 35 years of age but what the transplant surgeon needs to know and they already know that zero year old kidneys have a high risk of early failure and there are very few programs that probably accept a zero year old kidney and yet we may need to be rethinking that particularly for recipients who are older the one to five a block performed similarly to the best adult kidneys probably should be split to maximize the number of candidates who receive kidneys and then if split the surgeon should consider though whether they want to use it as a minor because all of a sudden those kidneys are no longer as good as the most ideal kidneys but more similar to the 35 to 49 year old and we might want to leave those kidneys to the adults I did tell you I had a pediatric bias and finally that allocation that assumes that kidney function improves literally over the pediatric age range are wrong there's a lot of assumptions that you know says they're trying to design these new allocation systems that pediatric kidneys are linearly improved and I think what we've shown first of all is that on block does a lot better than single kidneys number one but number two that the zeros are so much worse that they often weigh down if you can include them in the zero to five year old block so the minor is a transplant recipient clearly I think the minors get and should get priority in disease-dorgan transplants but we need to acknowledge the unintended consequences of this policy and we need to figure out how to improve compliance so that they really are useful and we also need to develop better guidelines and be realistic about these elective transplants as they are going to increase over time so we should all be willing to serve clearly the minor is a transplant deceased owner we also be willing to serve as deceased organ donors or a parent should be willing to give permission for us to serve if we're minors who should be living donors I threatened was going to be a separate talk but given that I'm a New Yorker and talk so quickly I'm actually going to be able to cover it and I'm glad so I'm going to skip over two slides my conclusions and keep going the data about the quality of pediatric donors though needs further evaluation and Dick, Will and Chris and I are working on some papers in this regard and it may change what we mean by share 35 it may require guidelines about what kidneys should be allocated on block but as I always say as I'm trying to conclude I'd be remiss if I did not mention that prevention of kidney disease actually must begin in childhood our obesity epidemic is just waiting to happen as these adults go into kidney failure so we need to reduce obesity we need to do better control of our children and diabetes and high blood pressure so I'm going to skip that I claimed that I was going to end and I'm going to go to the fourth point which is do children serve as living donors and should they so the fact is in the last 15 years at least 60 children have served as living donors in 2005 the Amsterdam Consensus Panel said no they never should a statement in the U.S. in 2000 actually said yes under certain conditions and the UNOS policies under developments in 2000 they said that age less than 18 is a relative contraindication but did not exclude it totally now the data I showed showed zero donors from this past year if you look actually in 2012 there's at least one minor who donated a kidney as a living donor and so I was asked by the American Academy of Pediatrics to write a statement on giving guidelines of when if ever should minor serve as living donors and this statement was written by the AAP Committee on Bioethics with both Dick Thistle Thway and myself as the lead authors so it's important because we actually based most of our recommendations on the U.S. Live Organ Donor Consensus Group from 2000 and they had four recommendations that the donor recipient are both highly likely to benefit that it didn't make sense to be taking it letting a child serve as a living donor unless you thought that the recipient had a high likelihood of doing well they also wanted to make sure that the surgical risk for the donor is extremely low so I think what we're really talking about is children serving as kidney donors although again if you look internationally at the data children have served not only as kidney donors but they have served as living liver donors they have served as intestinal donors the third point was that all other deceased and living donor options have been exhausted so we shouldn't be looking at children to serve as kidney donors if they have healthy enough parents or healthy enough other first-degree type relatives and there was an importance to at least give the child some degree of assent to donate without coercion and here it was recommended at the time to have an independent advocate living donor advocates have become commonplace now for both pediatric and adult but at that time in 2000 this was not a very common practice for the AAP we added a fifth criteria which were not only to focus on that the surgical risks below but that the emotional and psychological risks to the donor not only be low but also be minimized the data that we were looking at to think about this point really came from the bone marrow transplant literature and that literature where minors frequently serve as stem cell donors to siblings in part because they have the greatest likelihood of being 100 percent histocompatible the data there are somewhat or sometimes distressing particularly when a recipient does poorly that many children blame themselves rather than understand that it was their sibling's illness for which the recipient died so the interesting thing is one question is should we allow living donor transplant between identical twins right because genetically the same and the big benefit there is you don't need immunosuppression and so people ask questions about the emotional closeness and the data go in both directions sometimes identical twins are the best of friends and sometimes they actually hate each other right but this is the big significant benefit is the immunological benefit and so one question though isn't to just look at the benefit given that all the guidelines are focusing on minimizing surgical risk minimizing psychological and emotional risk the question is to the extent that we believe that being a living donor as a child may put you at long term health risks should we allow greater risk taking between identical twins and as I say some just do it as a cost benefit analysis say well the benefit is greater so the risk can be greater and some say no because the risk to the donor remain the same and so the question was should this allow for donors at a younger rate and Dick and I were very much against it but I should tell you that the American Academy of Pediatrics Board of Directors wanted us to treat identical twins differently they felt that there was such a big immunological benefit that we should be allowing transplants between identical twins so one of the ways of dealing with the Board was to get a student involved and do a study so this was a study done with Josh Joseph who is now an emergency medicine doctor at Mass General and what we did was we looked at 400 members in the American Society of Transplant and the 116 members in the American Academy of Pediatrics just because of the small sizes of these groups there were 80 members in the section on bioethics and 80 members in the section on nephrology and we gave them a survey where we asked them about 15-year-old twins one of whom has recently developed acute glomerular nephritis has begun dialysis and needs a kidney transplant the physicians were told that the patient had been placed on a C stone or weight list and would likely receive a kidney within the year due to her age the physicians were also told that her parents had inquired about serving as living donors but were ruled ineligible and that in response, her healthy twin asked whether she could serve as a living donor and so we gave a couple of scenarios with donation by the twin sibling appropriate in this scenario with donation by the twin sibling be appropriate if the weight for deceased owner was six years rather than one year with donation by the twin sibling be appropriate if the twins were 10 rather than 15 did it matter whether the twins were fraternal or identical and what if these were your own children so those are the questions that the docs were going to be asked 560 surveys were distributed 49 physicians were excluded because they couldn't be located another 75 excluded themselves saying that they either weren't practicing or these questions were outside of their area of expertise so the remaining 436 recipients we had a 39% response rate and what you see actually is that there was a 37% response rate by the American Society of Transplant a 43% response rate by the members of the American Academy of Pediatrics and here were our data and in part we're not going to get a lot of statistical significance due to the small size but what you can see is that overall looking at fraternal twins to looking at identical twins the numbers go up approximately 8 to 10% for every question whether it's about a one year weight a one year weight in a fraternal versus a one year weight in identical whether there's a six year weight and it continues to go up and noticeably that more were willing to have their own child serve as a living donor in each scenario more than they thought it was appropriate for the AAP to have such a policy so here's my question to all of you we have three groups the AAP bioethics the anthropology and the American Society of Transplant and my question is who are the least likely to want to allow a child to donate and who are the most likely so we're going to start with the most likely who thinks that these are the these are the bioethicists who thinks that these are the nephrologists who thinks these are the surgeons yeah well you're all wrong it's the ethicists who wanted to allow it so now I got data that made absolutely no sense to me right I'm sitting there saying I don't want to allow children to serve as living donors what's going on and we never actually because it was a small study we really don't know what's going on I came up with a story at least which is that the pediatric bioethicists think about things from a family perspective and so they were thinking about all the harms that would happen if they were allowed to donate and that the other child did poorly on dialysis but I'm making that up I have no reason to suspect that I want to point out that the surgeons are the least likely and when you think about it it makes the most sense they're the ones who are worried about the risk if anything goes bad when you're taking out a kidney from a pediatric donor I mean it's on your conscience and so it makes total sense that they were the most conservative I want you to know that when I'm in a pediatric audience the pediatric bioethicists so it was fascinating in this room that all of you gave the pediatric bioethicists that they were more concerned about risk than they really were so are twins different right so the overall data showed about a 10% difference between all respondents but anyway it was this data actually that helped us convince the AP board of directors that we were not going to make an exception for the identical twins so the policy came out saying that pediatric living donors should always be the exception regardless of histocompatibility and so now looking back at the study the donation by a minor is contrary to the recommendations from the U.S. live organ donor consensus group as well as from our AAP statement and you know even though I'm showing how many said yes and showing it between 30 and 45% that does mean that over half thought that children should never serve as living donors so to just conclude I've actually made many of these conclusions so I'm just going to skip to my final slide which is just to say I want to thank my colleagues who worked with me on all of these projects some of them are going to be presented the pediatric donor information is going to be presented at the AST in May and thanks again to Chris, Will and Dick this whole fight and Dr. Ross's paper is open for questions far in the very first section when you talked about the unintended consequences of being the less living donors it seemed like late there is a question of whether although we traditionally think of donation, living donation as super-arrogant or not not something that I was talking about on the obligation whether it would make sense for parents that we would think of them as having some obligation if they're compatible Donate I think all the parents would agree with you and what they're thinking to themselves is I'm going to be the retransplant that kidney is not going to last my child's life and while they can get priority for the best deceased donor I should take advantage of that so that my kidney is ready when my kid needs it so I don't think that they're in a sense reneging on their obligation I think they're deferring their obligation to a time when their kid really needs it Yes but not as long as what a ten-year-old needs Well no, I think the real reason I think it's an interesting ethical problem is because the new policy that they're trying to implement is this 2080 rule where the top 20% of kidneys defined by a kidney donor profile index would go to the top 20% of candidates mostly defined by age and so what we're going to see and I don't have a slide but if I did I would show you that approximately three-quarters of all kidney transplants in 18 to 30-year-olds come from living donors and as we start giving them priority for these deceased donors we're going to see a real drop in their receipt of a living donor transplant and then we're going to get real numbers remember kids make up a small percentage right, they make up 5% of all the deceased donor recipients 4% of the living donor recipients so it's a small number but as we start including the young adults I think it may become a bigger problem and it's one reason to actually oppose the 2080 it's not my main reason, I have lots of reasons for hating the new policy but it is an unintended consequence that no one's acknowledging and it's a really important one because you know can't control the living donors and they have to realize that we're talking about almost half of all kidneys are coming from living donors and if you do that Landy, isn't it the case that people who don't have the bad fortune of not having friends are going to be, they're going to miss out and otherwise get a lot of utility out of it? It is and that's why it's not a simple question but I think at least we have to acknowledge the data which UNOS has failed to do and then if they decide to go ahead with that policy that's fine but realize the consequences that may result which is less transplants overall and since their goal is to maximize their craft survival it probably is going against their own goal So Landy, throughout your talk I was trying to sort out your perspective on what to favor in some ways the perspective of the individual versus the community perspective and at times I had trouble sort of seeing if it was consistency or not for example in the maple syrup you talked about even though you might be able to serve more people in the community having maple syrup folks use dietary therapy you said you were inclined to say well they should be able to have transplant if they want yet when you were talking about the unblocked example and mentioned that well do you divide the kidneys or not you said well, so the opposite well probably we should divide the kidneys so that even those like a 7% less chance of survival benefit to people so this seems to be some contradictory So I'm going to start with my bias I'm a pediatrician and I really care about kids, right? So you notice I'm giving priority to the maple syrup I'm not, remember I'm also saying when I think we should be splitting the 1-5 year old kidneys because children get maximal choice of kidneys under share 35 what I'd really say to them is all 1-5 year old should be done a single kidney transplant and surgeon should be thinking about the 6-35 year old kidneys that they want to be putting into their kids So I'm consistent in that I am totally biased in favor of children I totally acknowledge that and again I'll argue that there's a real need for it in that children don't develop and don't grow and do really quite poorly when they don't have a transplant and they need it. With the maple syrup urine disease I'm a little more stressed with that because they can do well with dietary although if they have a decompensation you know it's irreversible and so that's really serious and it's really hard to maintain these strict diets and when kids get sick it's harder to really get to avoid a metabolic decompensation so again this is my pediatric side talking, nevertheless so since I'm a pediatrician so as a pediatrician I would definitely tell a parent with a child with maple syrup urine disease go on the liver transplant list so it's going to require that we have policies that are going to say yes or no or whether they get highest priority or not get highest priority because as a clinician the policy we need to decide if we decide we're not going to give deceased donor transplants to anyone who could be treated with dietary therapy then I'm going to even suggest to the parents to go for a living donor transplant so I don't think I'm totally inconsistent one I'm totally biased in favor of kids I acknowledge that at the beginning it's a full disclosure but second of all I do think that as a clinician we have to focus on our patients and yet we'll have to accept whatever policies we all agree on so I'm just going to start by reflecting out some of the intended and unintended consequences of the current policies that exist so Lanie my memory of our data is among the people electing to have their kids get a deceased donor transparent selecting for kids to have a deceased donor transplant first that's a much stronger more frequent opinion in the African-American community so I'm not sure that the answer you give answers completely that people are thinking this through because that should have no racial or ethnic bias maybe so Dick's point is a totally valid one which is when we look at which parents have become less likely to donate a living donor transplant it tends to be more of the African-Americans and that the Hispanic and whites were slightly lower but really minimally so and the reason it may be is again when we look at the health issues within the African-American family where by the time somebody is 45 the likelihood that they're going to have hypertension or diabetes is higher than in the other communities and so from their own health perspective it may be that they're thinking let's see if I can get the 45 and 15 be healthy enough to give a kidney that existed before also though second thing is that I want to emphasize the potential unintended consequence of the new system where you identify by who are the best 20% of recipients and give them the best 20% of kidneys because there are four things that decide who's in the best 20% of recipients and not having a prior kidney transplant is one of those so someone who gets a living donor kidney transplant as an infant needs another one when they're 20 years old isn't going to get one of those really good kidneys so they're going to be excluded so I think that's another reason for parents to defer in a sense to let their kid get the deceased donor kidney when they do have priority so the third thing I wanted to ask you as a pediatrician is that we know lesser degrees of renal failure not requiring dialysis when you're not eligible because of a low GFR even for a preemptive transplant do cause growth retardation cause delay and cognitive function are these should we actually preemptively be transplanting kids who have diseases we know are going to cause chronic renal failure early in the course of their disease wow tough question I guess I would let the parents make that decision right and I would bet that would lead to a lot more living donors for those children who have those kidney conditions which are going to be a slow decline and yet eventually lead to kidney failure I would bet they would go preemptive Alaney you showed us those curves on survival of organs by different age groups of the donors do you know if there are parallel curves in for example liver transplant or with the liver transplant situation show different kinds of results you're going to have to wait till the end of this summer since we'll have a student doing some of those projects this summer I don't know I'm sure there are but I don't work I specialize Mark I'm just curious in the calculations about maple sugar urine disease with and without transplantation how far out did the consideration of benefit go so for example did it consider the non-compliance of adolescence with immunosuppression and the long-term consequences of immunosuppression and the possibility of having to be re-transplanted at some time so since we've only started doing it in the last 5 to 7 years we don't have any long-term data but clearly those are issues the group that who have been in the sense that the forefront of this is the Amish community in Lancaster, Pennsylvania where the special the clinic for special something is and those parents that is a very tight knit community so that might not even help us in long-term data about compliance or anything else but it's a very totally reasonable point to be determined you have the same non-compliance with dietary control and again with the dietary lack of control leading to a metabolic decompensation that's irreversible Lainey what's the interaction of recipient age if the donor kidneys are very young do they they do well they do well if they get through the early period exactly that was all but we actually did divide it by age and people do well so it really is there's probably some cut off the one study that I pointed out looked and said it was something around 9 or 10 kilos worth of kidney is what you need we'll actually do an analysis of variants looking at recipient age okay well thank you very much