The women went off to become the incredible success. What toyota Brokerage Firm not to be repeated for 100 years. They became lecturers a and were celebrities they had headlines like madonna. Based on the beginnings with the vanderbilts and. And they kept threatening them with blackmail the will exposure. And then the mother started a ridiculous court trial with her then husband 22 put her in the insane asylum and the press went wild writing about the trashy family. And they have been trying very hard to hide all of that. They were not at all the least bit educated so they were willing for their whole life they just had its rotten affairs within the family. Good evening. Teeeighteen is my wife and in case you dont follow the career i want to say some words. With the ph. D. Of bioethics is the first westerner to come into every and to see she will tell you what motivated her and whether or not i rarely has solved the shortage. [applause] can you hear me . Thank you. And that was sweet and excited today when i am that optimistic id like to think that i of the Harriet Beecher stowe of the transplant world and people who read my book will see a human face and it will make a see change at the living in donations. If you may not know who is here it Beecher Stowe she wrote the book ogle, scabbed during the civil war a and because of her book she put a face of the suffering of the slaves in the south. And brought it home of what life was really like for them and that is what i hope to do with my book to bring home what it is like to be a kidney seller in iran. Is not academic or polemic but a book of stories my a story of discovery and the sellers. I will give you a tidy bit of background on the organ crisis for context of the book then we will see a short to fade a trailer that my friend does in three minutes that i could not do in 20 minutes. Said we go to questions because that is the most important part about the book. What about the history . It starts in 35 years ago with the immunosuppressive drug that made it possible to transplant one organ from one person into another. The organ that they used was a kidney because we all have two of them. Both the donor and the recipient could live with one. But the realization we could save people who needed a kidney with that immunosuppressive drug was a brilliant scientist then we should use cadaver organs. Then the whole development then it started to roll fast for those who needed hearts, lungs, livers, intes tines every other possible major organ. That we cannot get from the living donor if you look today there is a real insight if you need a heart or a liver live here if you beat a kid we live that iran because it is more medically qualified you will get what. In the United States of the web hundred 20,000 people who need organs, 100,000 are kidneys. 20 americans die every day because they cannot get a kidney. That does not happen in every and. Now the last few years it also is working on the deceased or get a program that is catching up and they look to us for technology in that direction but i tell ive went to ivory and americans arent looking at all to iran how to deal with the kitty storage. The kidney storage. But nobody wanted to go or believe they could have done it or maybe they were exploiting the pork or forcing people to donate. So maybe someone should go book to see what is really going on. Getting there was not easy. But the book talks about that and also the iranian customs but ultimately what it comes down to is people helping people and be willing to donate a kidney the way americans do. A lot of americans donate a kidney altruistic rebuttal is 16 that needs one gets one. The altruistic donation is clearly not enough. Even if every single american were a donor we still would not have enough kidneys because you were than 1 of the population dies under a condition that makes procuring an orchid feasible. Their reason is too far away from hospital or too old or 26. To six. So every donor that could increase the amount and my feeling is we ought to take a close look at what iran is doing. The analogy i like to use if you have a neighbor down the street that you dont like gore get along with you can avoid them. No problem. You dont have to interact with them but if the plague hits the streets and people start getting sick and the neighbors are dying and people in your household are dying but for some reason the person down the street that you dont like no one in their household is dying. How long does it take before you have the courage to knock on the door and say share what your doing . I dont want my people to keep dying and you were doing something right. It has taken us 30 years. I would like to go ahead to show you the trailer to get the overall sense of the book. c one more thing that is important before rigo to question and answer period why is it illegal in the United States . In 1983 right before the National Organ act was passed a doctor suggested we important organs from developing country pate and a couple thousand and send them back. They thought it might be exploitation caretaking its vantage of people. It was the streets out to be and written into the act at the same time people were telling congress dont worry we can solve was the organ shortage with deceased or kims. Organs. Now we have not and will never happen. Second, they threw the baby out each with the bathwater because iran is on a case like the black market. The first thing they did was close the system to foreigners. They didnt at first but theyll learn to their lesson you dont have foreigners coming into purchase or sell. If there is a system that compensated donors in this country it is only available to americans and not available to foreigners. Either selling or buying. The other thing that happens it would be considered to pay for the organ. I have created an organization and stop trafficking now that his focus to get the law changed so our goal is to remove if the disincentives that exist in the american system. So now i will open up to questions. Please come to the microphone. If they go to the doctor with frequent youre dating but how do they know if it is a kidney problem or overactive by kathy and . I am not a physician but clearly diabetes is one of the greatest causes of losing kidneys longterm solutions would be to improve our diet to help prevent things like diabetes and hypertension but that would take many years. But to allow programs to help to compensate for the more immediate solution there is anywhere from 20 or 25 americans dying every day so while fighting diabetes is long term it is not a media. Even if compensated Organ Donation there is the intrinsic undertone of exploitation. The people who are more likely to donate organs that seems to be the case in iran so what about the ethical points . That is a good question of but part of what happens when you legalize something you normalizes it. Most people who buy and sell organs are the middle class. If you have a black market you have to be very desperate for money to do something illegal and take a health risk to go to the unofficial hospital or those that dont have permission and if youre on the black market that 50 percent of those people were not paid but they were promised so if you have ngos Nonprofit Charities those people dont get paid. In the United States if you decide to be of the burden of the waiting list because chances are too slim he will probably pay 100,000 to a broker than the guy who donates get 2,000 then that person is afraid to get care at the hospital because he has done something illegal now will die at home. So the donors in the Recovery Room they came to the same clinic for after care yes people may need the money but theyre doing and not because they are desperate but want to improve their life. To be full of stories with people who sold a kidney to start a business or to build an addition on their house. The equivalent to pay off their mortgage. They are not desperate but middleclass i radians taking a advantage of the way to make money. The person selling the kidney is a resource for the person who is getting a. Like a commodity. That each is a beat each other one from dying and the other saves from a financial need that they have. And i heard over and over you cannot put a price on the kidney to save someones life. It is a good deed. The of money just makes it possible because that is the problem in the United States. We have reserved kidneys for the rich and the will to do. If they cannot spend 9,000 of their own money up front for recovery you dont get the kick me. Next question . A good friend is going through a transplant what can he do to make themselves better . I am not a physician but i am very glad he did get a kidney. Did he get it off the list . He is one of 15 . He really has to talk to a doctor about that. I wish him luck. If the a regulated system was in place we know it would look Something Like this so what factors should government consider . Excellent question. The actions out of iran are mixed digest got it email yesterday to said it seems like does it dangerous country did she not feel safe in my home . I said a couple months after i got back a journalist was imprisoned for four months. Not living with you but the filming was dangerous. I had other iranians and physicians say what you mean you did not like the way we were doing it here . But i was critical how they did it in tehran. I hope once they calmed down they will look. That a lot of people are very excited that there is something we can learn. But with the second question my book in its conclusions suggest we do a pilot project. But i was lucky enough to get a law firm to work with me pro bono to move government in the right direction they felt that was not the right approach because it requires funding. So they suggested that we were caught change the definition of valuable consideration which has been shipped dash already over the last few years with characterization Congress Said that is not valuable consideration by create funds for those setter 300 of the poverty line so we want to check out the limitation for food is allowed to be reimbursed. And the way to do that is broaden the exception of what is considered a type of payment that is not allowed. That is what we are working on right now. I will go testify next month in front of the fda transplant committee. I dont know if that makes a difference but they suggested 10 years ago we look at compensation and it did not go anywhere. But working with the law firm the good thing is it would be a gradual change that would not require additional funding. I talked about the situation of a family of a transplant patient, their housing and meals and babysitter taken care of by some charity, were going to allow that kind of thing happen to donors. Ruing now thats illegal. So well allow private charities to get more involved. One thing we are not going to allow this is one reason the organization is called the stop organ trafficking now is we believe that we need to outlaw any kind of brokering. So, it has to be charities, like in iran. Iran learn this, too, because iran had a system where people were making money, making matches, and it backfired on them and its starting to happen again in iran, but its much better if you have Nonprofit Charities helping door donors than a profitmaking organization. So our suggestion is congress ban any kind of brokering, anybody getting a fee for doing matches. And also, encourage charities to step in. Will you please come to the mic so we can hear you. Theres been concern and reference to some people madam, could you please come to the mic so we all can hear you . Taking organs without peoples consent, and theres been a question as to whether a person is really deceased. They havent really come up with a definition of a person who is deceased. Before they take organs. And how do you what would you tell people here how to protect themselves from organ snatching, and when a person is not able to speak for themselves, and that sort of thing . This is the fear that has come up in part because of the push. Theres such huge push in the United States for people to donate, and we have such an extreme shortage that people are afraid of things like organ snatching. Now, theres no evidence that has happened in the United States, other than in Funeral Homes where tissue and bones, not major organs. But [inaudible] right, right. Well, that has been known to happen once, that someone that the Funeral Homes were engaged in taking tissue from the people they were supposed to prepare for burial, and those people have been prosecuted. [inaudible] i dont know how widespread it is. I have been concentrating on major organs in the hospital setting, and no one has ever been accused through the legal system of any kind of organ snatching, but people have that fear because in america the shortage is so severe and the doctors ask and ask and ask, and so the fear comes up, man they will take it when im not looking. I also have actually on the center for Ethical Solutions theres an article and a book i wrote on at the definition of death. So, that question has come up. And so far, really, the issue is when do you ask, really . Thats really what it comes down to. Were pretty sure when someone is dead. That is a debated issue. Again, if youre using living donors, you dont have a problem. I had a couple people in iran tell me, i was just flabbergasted. Now theyre starting to have the option of having deceased organs so they can be on both lists, and often people take whichever comes first, which usually is the living donor. A had a couple people tell me i would never take a deceased organ. I said, why . Because i cant look the person in the eye and make sure theyre okay with it. I thought that was very interesting. If you have a living donor you can look them in the eye and see if theyre okay with it. That brings up another point, which is kind of interesting. The charities that do the organ matching, its kind of like open adoption. 50 of the iranians would want to know their donor or their recipient, and the other 50 didnt want to know. It was really up to them. Only if the donor and recipient wanted to know each other could they know each oomph because thats an issue that comes sometimes up in the United States, about whether or not it should be anonymous or not in iran they let you choose. My question is, what ethics underlying that whole process and whats the difference between, lets say, the ethics of u. S. , which i dont know michigan or the egg thicks ethics of iran or china whats the egg thicks as to what is proper and what is not prope the ethics is a question of whether or not it exploits the poor to offer them the option of selling a kidney or being compensated for a kidney. On the black market theres a real threat to vulnerable populations because they are lied to, cheated, they arent given their money, their organs are taken sometimes without their permission. If you have a system where there is a rule of law and informed consent and guarantees for fair dealing, you have a Civilized Society with a civilized way to make sure people know what theyre getting into. We allow people to do living donations. Its not dangerous. A third of the kidneys transplanted in America Today are from living donors. We dont think its inherently dangerous. What were worried about, at least when we was foreigners who couldnt speak the language, vulnerable populations coming in and sellings their organs. Everybody who is living donor goings through psychological tests and medical tests so anyone who is compensated donor would go through the same test, and you want to make sure that they know what theyre getting into, they understand the risks, and that this donation is happening because they really want it. If youre on compensating expenses theres no reason to doite than a good deed. Youre just taking away the financial distancing, and actually i have not heard any ethicist argue about that. Compensating someone for their expenses is fine. The question is how . Some of the processes we have now, like credit on your taxes for expenses for Organ Donation, dont do a poor person or even a middle class person much good because you have to have the 8 or 10,000 up front and then you only get the money back a year later. So those people have relatives and friends that hey cant they cant afford to help and thats what is wrong with the system. So, i think that if you have a Civilized Society with a deposit decent rule of law you can prevent difficult choices. You make them safe. You make them safe with informed consent, and something that assures fair dealing. , in, i have a question about how do Insurance Companies take this living donor donation . Are they going to exclude them as a condition problem with the law, are they going to [inaudible] regular patients with bad kidney . Are they going to be excluded, give an organ, now you have a problem with the one kidney you have, is that going to be very good question, and that has happened in the United States. A woman called me who said that she had her she donated a kidney, and she had a problem afterwards and she didnt know if it was related to her kidney or not, but her Insurance Company decided it was and five years later, and 300,000 later the hospital and the Insurance Company are still arguing about who should be paying her bills because the hospital is supposed to cover anything directly related to the kidney transplant. So the Insurance Company was arguing it wasnt. So this poor woman was stuck with 300,000 in medical bills because her Insurance Company wouldnt cover it until the suit was settled. In iran, it is against the law to discriminate against someone because they had donated a kidney. But i also think that because of obamacare, hopefully, most people will be insured and it wont be a problem if you donated a kidney. I heard of someone who switched jobs under the old system, who was denied coverage because of a preexisting condition argument. Im hoping that it wont be a problem going forward. My name is emily. I wanted to ask the question about your comments on how you think im assuming the system in america would be all government based and not privatized. That was causing problems. Right . Well, it would be private in the sense that private charities could help. Right . But not businesses you couldnt be forprofit organ brokering. So, iran is a country compared to america is vastly different in demographics because america is the melting bowl and iran is so much smaller than america in terms of infrastructure. We have almost none compared to them. And so what are your comments on how it would be different, the legislature or the system would have to change if it was adopted in america . Another excellent question. Actually, i think it would be pretty easy because, for example, im the washington regional organ transplant community, and what they do is they enforce the nationally based laws on how to distribute organs. So, if someone dies in the hospital who has kidneys or other organs that they can retrieve, that goes into a computer and we find a match within a twohour radius, and we in the United States are the best in the world at that, at the deceased organize gap issue, and we have a fantastic system for distributing organs as fast as possible. If you have someone walk in the door who wants to do a living donation, right now they usually come with the patient, because theyre a relative or friend and the hospital takes care of it. I think the organ procurement organizations should take it on and distribute those organs the same way they distribute the deceased organs, namely according to priority matching. Its a point system, so it would be done based on who needs the organ most and who is the best match. But we have this vast network so it would just be a question of expanding their responsibilities a little bit. Thank you. Youre welcome. I know this guy. Iran isnt a country known for getting a lot of american tourism. How did you get permission to travel there and conductor research in iran . I like to talk about the issues, but all the reviews on the book are coming back that the story of how i got there and what it was like to be there was for in people the best part of the book. Im not none of the royal people come to me. They all good to solving the organ shortage project, but the story itself, i must say, is a little bit exciting. I wasnt allowed in. My visa was denied at first. I decided i would apply to get a conference in iran, and speaker said youre american, right . Yeah, im american. Are you sure you want to come . Real . Most americanes dont want to come. So i went, and my series a to go visa to go to this conference was processed with these other visas so i got for ten days. The end then the drama begino do i want to take with me, and famous documently filmmaker pulling out, a medical anthropologist pulling out. Finally, a doctor, who is an american iranian takes a medical sabbatical from his soft provisions allow your family to say no. If you had said nothing about Organ Donation your family cant stop it. My problem with that is i think it goes against the green of what americans believe. They believe they are in control of their own fate and their open bodies and like the idea of their family deciding if they have not decided. That aside it would only increase the number of organs by maybe 10,000. I think through living donations, we could solve the organ shortage. And the reason maybe not with just getting rid of the disincentive, but something that people people ask me, is that what they did in iran . Got rid of the disincentive . No, the average package of money and services that people were getting when i was there was close to 45,000. Thats in u. S. Dollars equivalent. Because when i was there, three million was toman was the average income for iranians and the average price was four or five million toman. So more than the average robban made in a year, and thens they get three health service, job services, access to job loans, they would get free dental car, eye care, all the sorts of things that were available in the aftercare clinic. So they the sea change i was talking about is the institutions that provide the charities for transplant patients and donors the sea change is where it worked well in iran they treated both the donor and the recipient as their client. They wanted to solve both their problems. So, if the donor was out of work, they would try to help him find a job. Sometimes they would even help them find a job so he wouldnt have to donate. Or if he wanted to start a business, they might some of the money might come from the organ sale and then they might give him a Business Loan in addition to that to help him solve his problem to start his business. We came across several people who were apprentices and couldnt get out from under their apprenticeship because they couldnt save enough money to start their own businesses. So some people sold their organs to do that. Did i answer your questions . Okay. Any other questions . Hi. What about, like, the fact that poisoning the water, you have gmos that cause cancer in the food and you have marijuana which cures cancer and numerous many, many studied out from universities in america and abroad. Why dont we talk about those things, instead of donating organs, fix the problem. Seems like everyone likes things to fail and break down because everybody makes money, but we stop poisoning ourselves and got gmo poison in breast milk in the mothers now, and toxic levels, and also in baby formula. Why dont we talk about that stuff . Okay. Well, thank you for your question. Those are clearly issues that somebody needs to talk about, but it isnt my book or my particular cause. Those are also longterm solutions. Im talking about something that if the law changed tomorrow, wed immediately start saving american lives. The thinks youre talking about are longterm virallal things, which i also believe in. Are you a medical doctor . No. Im a lawyer and youre a lawyer. Ph. D in ethics. You doctors take an oath like soldiers take an oath. Doctors take an out to save people except cannabis can cure cancer. Lawyers can sue monsanto and shut them down very interesting. Anybody has a question related to my book . First question is about the impact of [inaudible] pertaining to the fact that i know we do know that and so and also studied have been done specific to your book. Anything i interviewed 216 people, and some of those interview were with doctors, and the ngos that did the brokering, but 50 were actually kidney sellers and then dialysis patients as well, but one thing is if you have people who need kidneys who arent getting them, where would they be . They would be in the Dialysis Center. Or as one iranian doctor told me, they will be in rural areas dying without even being recognized as have kidney disease. Iran says they have that problem. The problem that some people arent identified at all or identified too late in the rural areas. When the doctor and i went from person to person to person in the Dialysis Center and we asked, why are you here . Oh, im getting my kidney next month. Why are you here . I lost my kidney. I dont want to go through that again. Why are you here . Im an afghany and they wont give me a kidney. So we went in five different Dialysis Centers, patient to patient to patient, and there wasnt anyone who said, im too poor to get a kidney or they wont let me have one. So, where are they hiding those people if they exist . Right . [inaudible] the second question i want to ask you is more informal. Are you going to go back . Thank you. Well, in the name of small successes, theres a gentleman who called me a couple days ago and said, i was about to head to the philippines to buy an organ illegally and i saw your book and i said,ey . My book done tell you how to get a kidney. He says, yes, it does, if youre an american iranian. Im flying to tehran in two days. So, i dont know. I dont know if its safe for me to go back, to be honest, and i also think that if i had asked for permission, im pretty sure they would have denied it. If i go back, they might know what im up to and probably deny my visa right up front. Although the academy of medicine and science Science Education asked me to come to talk to them about my findings, but i dont know. Im hesitant. Hi there. I also have a question for you. The first being you mentioned earlier in your talk about how deceased Organ Donation wasnt really used as much in iran as it is in the United States, and in other countries. I was wondering if you could talk about the cultural shifts that might cause that to me more practiced in iran, and then i was also interested in hearing about why living donations the implementation of the program differs from region to region in iran. Seems some are implementing it better than others. Exlen questions. One of the problems of the data coming out of iran is you had articles based on information that was collected 20 years ago, in run region in run or the other region in run, and then more recent data from one hospital in tehran as opposed to other places, and some of this data is like saying, you can judge the u. S. Medical system by looking at rural mississippi 20 years ago. Is that fair . No. Right . Well, the same thing in iran. Iran has poor areas and has wealthy areas, it has big cities and it has small villages, and the big cities that are rich are the ones who have the best program, and in particular, its i was very, very impressed with the programs there. There is horrible data from karamansha, the doctor did interviews 20 years ago when iran hadnt really started regulating it yet. So it was kind of what they call a gray market at the time, and those donors felt horrible about what they had again through. The money they were given hadnt solved their problems, they were still poor. There was no control of their aftercare. Well, iran learn from its early mistakes and so over 30 years, while we were improving our deceased Organ Donation program, they were experimenting from region to region and over time with how to improve their living donor program. So, i suggest that theres a lot more we can learn from places tehran and nothing to learn from but thats not unexpected. If you want to see a shining, efficient, cancer hospital, you good to sloankettering in new york you. Dont go to some county in mississippi. And but because of that i think i got a good view of how things could be different and why. In iran because we did good to six different regions, spending a week in each. Now, as to your second question, this is really fascinating. I think because before the Islamic Revolution they were working towards doing deceased Organ Donation just like we were, but the koran has warnings against using a deceased body. When the Ayatollah Khomeini came in and there was strict interpretation of the koran, people also thought that the ya of deceased organize begans would be banned, and it took the mullahs and the ayatollahs potentiality ten years of debating whether it would be acceptable to save a live by using parts of a corpse, because youre not allowed to eat corpses if youre starving. What happens if you want to use a corpse to save another life, like taking an organ . And after ten years of debate, they decided it was okay, and then shortly after that, the Iranian Parliament made it legal to do deceased Organ Donations, and so now theyre behind but theyre starting to catch up. Theyre starting to domer liver transplants, more heart transplans, and also deceased kidney transplants. So, theyre