Sigrid fryrevere, founder president for the site for Ethical Solutions is next year to travel to iraq or selling of organs is illegal. The set of the country solve the problem of organ shortages and a major problem today u. S. This is just under an hour. Good evening and links for coming. You may be wondering about the similarity in their names. Its because sigrid is my wife and so it is my great privilege to be able to introduce her here tonight. And in case youre in familiar with her career, i want to just say a few words at the beginning. Sigrid is a person has accomplished many first and her allies. Shes the first person to have as a joint law degree and phd in bioethics in the united state which eminently qualified her for another of her first. She was the first to travel to and to see the donation for kittens. Shell tell you about what motivated her and what was unique about it and whether or not she has sold this shortage. Without delay, sigrid fryrevere. [applause] im not doing this right. I know why. Its supposed to take this one, right click got it home okay. You can hear me, right . Thank you, bob. That was three. I am very happy and excited today and when i am less it, i like to think that maybe i am the herriot teachers go of the kidney transplant world and that people who read my book will see a human face on kidney sellers and herein and diplomate to see change in how the u. S. Looks at living donation. For those of you who might not know what harriet beechers airwaves, she wrote the book Uncle Toms Cabin at the time of the u. S. Civil war and because of her book, she put a face on this offering is played in this house she brought the debate about slavery home to family and people feeling in the life is really like for them. That is what i hope to do with my book. I hope to bring home what it is like to be a kidney sellers and it ran. So my book is nonacademic. It not a polemic. It is a book of stories. Nice. Discovery in the story of the kidney sellers whom i interviewed. Im going to do three things today. Im going to give you a tiny bit of background on the organ crisis because without that you dont have a context for the book. Then we are going to be a short book trailer that my friend made for me because she doesnt reminisce what i could do in 20. After that will put a question because it is my herein but that is really the most important part to answer your questions about the book in the system and herein. So what about this area . The history starts really 35 years ago with the development of immunosuppressive drug that made it possible to transplant one oregon from one person into another. The organ they use with kidney. The reason they use kidneys is that we all have to kidneys and both the donor and the if you could live with just one. But with this realization that we could save people who needed kidneys and we could use immunosuppressant drugs to do that, the brilliant scientist and medical researchers at my goodness, why dont we use cadaver organs. And then the whole development of transplant history really is dirty growing fast with figured out that we can these people who needed heart, who needed loans, needed livers, needed and test. Every other paths of major organ that we could get from cadavers, but we obviously cant get from living donors because the living donors need to. They kidneys then and now, living donors can be fine with just one. Thats very, very important because what happened about five years later is the arabian islamic revolution. And the significance they are is that the time iran was participating in the european organ transplant network. So they were developing like the west was a cadaver Organ Donation. But when the unlike revolution had, they were cut off from the west in part because of religious and. The koran has been problems with using dead bodies and because the west shortly thereafter impose sanctions and they didnt have the research is coming at Technology Review structure to really continue deceased Organ Donation. So they decided to focus on living donation. The simpler sort of oldfashioned way of dealing with the transshortage. This wasnt as irrational as you may think because 80 to 90 of people who need organs they kidneys. So they focus on the largest part of the population that needed help, while we focus on everybody at the same time and we focus on finding the type ologies we could to keep organs viable and transport them quickly into every them we could to get them from cadavers. Why put a living person at risk for a kidney if you can get it from a cadaver. The important point here is we went in two different directions. He ran than 30 years improving it Living Donor Program while we spent 30 years concentrating on our deceased Organ Program. Now if you look at today, there is a real and that you can get from them is old. If you need a heart or liver, better live here. If you need a kidney, being iranian. Because imuran axiomatically qualified to get a kidney, you get one. In the United States, out of the 120,000 people who need organs, 100,000 of them need kidneys. 15 to 20 american die every day because he cant get a kidney. And that is not happening in iran. For the last 10 years iran has houses in order to work on it deceased Organ Program but slowly catching up. And theyre looking to us for a lot of technology in the developments in that direction. But until i went to iran, americans were not looking at alternative landuse fee how to deal with the kidney shortage. They had thought that are reclaiming the ball pit and it kind of my mind that no one wanted to go. No one believed they could done it for said maybe they were awaiting the poor are forcing people to donate. And welfare claiming to solve the shortage coming maybe someone should go work. Maybe someone should see what is going on. Getting there was not easy, but the book talks about that in the book also talks about, you know, just the ring and cut them. But ultimately what it really comes down to is people helping people and people being willing to donate a hit away a lot of american studio. A lot of american donate kidneys all touristic lee. But only 15 to one of the population that needs a kidney and that getting one. They all touristic donation is clearly not enough. The only other thing you really need to know is even a families angloamerican were a donor, we still wouldnt have been half kidneys because fewer than 1 of the population dies under conditions that makes sharing organs feasible. The reason is they die too far away from the hot widow but they are too old or too sick. Even if every single american were a donor, that might increase the amount by 10, 15,000 kidney and my feeling is, you know, we really want to take a look at what arenas doing. The analogy i like to use is if you have a neighbor down the street that you really dont like him you dont get along with them, they have different traditions you do, you can avoid them no problem. Stay away from them. You dont have to interact with them. But let say that it placates your street and people start getting sick and your neighbors are dying and people in your household are dying. But for some reason that person done this tree, the one you really dont like, no one in their house with his dying. How long does it take before you have the courage to go up to the person, knock on the door and say hey, share with me what you are doing because i dont want my people to keep dying and you seem to be doing something right. Well, it has taken us 30 years. I would like to go ahead and show you guys the trailer now you can get an overall sense of the book. Is. One is historic. Namely, this 1983 right before the National Organ act was passed, dr. Jacobs suggested that we import people from developing countries, pay them a couple thousand dollars, take their kidney and send them back home. Just a few people, okay . They thought this might be exploitation or taking advantage of people from developing countries, and so it was pretty much a straight out ban was written into the act. At the same time, people were telling congress dont worry about it, we can solve our organ shortage with deceased organs. Now, two things are important. One, we havent solved our organ shortage with deceased organs, and its never going to happen. The second thing is that they kind of threw the baby out with the bath water because iran isnt a case like what youre talking about in the black market, you know . Were not one of the first things they did was close their system to foreigners, okay . So you dont have they did at first, but they learned their lesson. You dont have foreigners coming in and purchasing or selling kidneys in iran. So if there were some kind of system that compensated donors in this country, it would be with one only available to americans and not available to foreigners, okay . Either for selling or buying. And the other thing that happens on the black market that a lot of people dont understand is you look around and you think of kidney selling, you think of the black market. Because thats what you hear about on the news, and thats at 0 thats 90 of whats going on. The reason the black market really is unethical and abhorrent is because theres no rule of law, theres no enforcement of donors rights, theres no protections for donors. So if in this country we can manage to enforce informed consent and fair dealings which were really pretty good at, i mean, were not corruptionfree, but were pretty good at maintaining, you know, fairness in our society then we should be able to help people who are donors be altruistic and donate. The system that we have now actually has a disincentive for donation because our system will cover your medical costs, but they wont cover incidental costs. You know, people who have given a kidney usually have thinker from a month to three anywhere from a month to three months of recovery, and that kind of depends on whether or not theyre a blue collar worker. But how many people can afford to be out of work for three months, right . In this country you have to be able to support yourself during that time. We have charities that can help people who have the transplants, and you can imagine you go to the hospital, and a charity puts up the whole family of the transplant recipient, and if the donor wants to have their family come stay with them or pay for a babysitter or anything like that, charities cant help them. Its against the law. It would be considered paying for the organ. Now, i have created an organization, stop organ trafficking now, which is working on getting the law changed. So hopefully, something will happen there. Our goal is removing the disincentives that exist in the american system to make Organ Donation easier. Now ill go ahead and open it up to questions. If you wouldnt mind coming to the center mic so that everybody can hear you if you have a question, that would be really great. How would you know if [inaudible] you experience frequent urinating maybe because of sugar overload, but if it continues, how would you know if you had maybe a kidney problem, or maybe it could just be overactive by caffeine . How would you really know . Well, im not a physician, but clearly diabetes is one of the greatest causes of people losing their kidneys in this country. So if you talk about solving the organ shortage, longterm solution would be improving our diets and helping prevent things like diabetes and hypertension. But that would take many years. So Something Like allowing a program that would help compensate living donors is her of an immediate solution that would help save lives now. Because remember i said theres anywhere from 2025 americans dying every day. So while fighting diabetes is certainly a longterm solution, its not an immediate one. So even if compensated Organ Donations were put in place in this country, theres going to be some kind of intrinsic undertone of exploitation, because the people who are more likely to donate their organs are those in financial need, i would presume. And i think that seems to also be the case in iran. So i was wondering if you could just comment on the ethical points of that. Okay. No, thats a very good question. But part of what happens when you legalize something is you normalize it. And actually in iran, the most people who both buy and sell organs are the middle class. If you have a black market for selling organs, you have to be a really desperate person, desperate for money to do something illegal, to take such a health risk of, you know, going into unofficial hospitals or hospitals that dont have permission. And if youre on the black market, statistics say that 50 of those people dont get paid what they are promised. And in pakistan the last survey i saw 100 of the people in the survey werent paid what they were promised. So if you have, as you do in iran, they have ngos, nonorganizational nongovernmental organizations, so Nonprofit Charities that do the donor recipient matching. Those people dont get paid. So they arent the brokers like we have on the black market. In the United States, if youre a rich person and you decide you dont want to bear the burden of trying to get a kidney on the waiting list because your chances are too slim and you decide to go to the black market, youre probably going to pay 1 200,000 to a broker. Then the poor guy who donates the kidney gets 2,000, and then that person is afraid to go to the hospital to get after care because hes done something illegal, and for all you know, gets an infection and dies at home, okay . If something is legal, that doesnt happen, you know . When we were in iran in the hospitals, you had the donors were in the Recovery Room right near the transplant patients, and they were in the rooms near each other, too, while they were waiting for the operation. And they come to the same clinics for after care, and they get the same doctors, and they get the same care. And when its not illegal you have, yes, you have people who might need money, but you also have people who are doing it not because they are desperately poor, but because they want to improve their lives. My book is full of stories of people who sold a kidney to start a business or to build an addition on their house or to do the equivalent of pay off their mortgage. So these arent people who are desperate, these are middle class iranians who are taking advantage of a way to make money. In iran theres also a whole different attitude. You know, on the black market you think of it as the person who is selling their kidney is a resource for the person whos getting it. Like theyre selling a commodity or something. The iranians dont look at it that way. The way they look at it is as a service to humanity. And that both parties are saving each other in a way. One is saving a person from dying, and the other is saving a person from a financial need they have. And they also heard over and over again you cant put a price on a kidney. You cant put a price on saving someones life. This is a good deed im doing. The money so i have two questions. First would be what is the response from iran, like, to you personally . Because, arguably, this is good press. And the second one is if regulation was in place here, we kind of know what the end would look like. Something like this, but maybe not that. How do you see the transition in terms of allocating the rising number of kidneys available and what factors should, i dont know, government consider . Excellent questions. Actually, its kind of funny. The reactions out of iran are a hitting mixed. A little mixed. I just got an email yesterday from a very nice physician, and it says dangerous country on the front. Did she feel threatened . Did she feel not safe in my home . And im like, well, a couple months after i got back a journalist was arrested and imprisoned for four months, you know . [laughter] so i just wrote him back, it wasnt living with you that was dangerous, it was the filming that was probably dangerous. And ive had other iranians like a physician from tehran said what do you mean you didnt like the way were doing it in iran . What do you mean . So, you know, but i liked the way they were doing it in certain place, and i was critical of how they were doing it in tehran. I hope that once they calm down they will look at it as a way to improve their own system. But it has not been a lot of people are very excited about it, and a couple physicians have contacted me and said, thank you, thank you, theres something we can learn from this. But ive also had a couple funny reactions, i think, to the book from iranians. As far as your second question is concerned, my book in its conclusion actually suggests that we do a Pilot Project. But i was lucky enough to get the law firm of dixie and shapiro to work for me pro bono on trying to move government in the right direction on this. And they thought that a Pilot Project was not the right approach because it requires funding. So they actually suggested that we work on changing the definition of valuable consideration. Which has been chipped at already several times over the last few years like with paired donations. Congress decided thats not valuable consideration, thats fine. Theyve created funds for people who are 300 of the poverty line. So we want to continue chipping at the limitations for who is allowed to to be reimbursed as a donor. And the way to do that is to broaden the exception to what is considered the type of payment thats not allowed, okay . And thats what were working on right now. Im going to go testify next month in front of the finishing das trans the fdas transplant committee. I dont know if thats going to make any difference. They suggested ten years ago that we study compensation, and it doesnt go anywhere. It didnt go anywhere. But the thing is the good thing about what dixie and shapiro is suggesting is that it would be a gradual change that would not require additional funding from congress. We would have two approaches. One would be to change medicare because to keep the patient on dialysis costs 300,000 approximately more per year, per patient than to give them a transplant. So were going to move some of those funds towards compensating donors for their expenses. And that will save medicare money. And so we think we have a rate good argument for them to do that a pretty good argument. And that would only go to donors who are at the top of the waiting list, who are in the host need. So that would be medicare funded. And the second thing we would do is broaden the exceptions that allow charity to get involved. So like the situation where i talked about where youd have the family of a transplant patient, their housing taken care of, their meals taken care of, their babysitter taken care of, all of that by some charity. Were going to al