Some Ethical and Policy Issues in Living Kidney Donation

November 18, 2021

Information

November 17, 2021

John D. Lantos MD
Martha Gershun
Ramesh Batra, MD

ID7182

To CiteDCA Citation Guide

00:00Good evening everyone.
00:01I'm Jack Hughes.
00:03I'm along with Doctor Sarah Hull,
00:05associate director of the
00:07Program for Biomedical Ethics.
00:10We, the program for biomedical ethics for
00:12those that those of you who are unfamiliar,
00:15sponsors 2 to one or two at least
00:18one or two sessions on a variety of
00:22ethical topics throughout the year.
00:25Your usual host, Mark Mercurio,
00:27who is the director of the
00:29Program for Biomedical Ethics.
00:31Is in Florida dispensing enlightenment
00:34at a national conference,
00:37so he can't be with us today
00:38and I will be your host.
00:39We are privileged tonight to have
00:42a presentation on the ethical and
00:46policy implications of living organ
00:49donation and our speakers tonight
00:52are Martha Gershen who is a writer
00:56and an advocate and a consultant,
00:59and although she was ambivalent about me.
01:02Revealing there she is a graduate
01:04of both Harvard undergraduate
01:06and Harvard Business School.
01:07This is not something she she
01:10reveals to that many people.
01:12But most importantly,
01:14she is a living organ kidney
01:18donor to an unrelated recipient.
01:21But we're also pleased to
01:23have Doctor John Lantos,
01:25who is professor of Pediatrics at the
01:27University of Missouri in Kansas City.
01:29He is the chief of the Bioethics Center.
01:33At Children's Mercy Hospital,
01:35he has written extensively on bio Med bio,
01:40ethical issues and we are
01:42pleased to have them both.
01:45Tonight.
01:45We will also be joined later
01:47by Doctor Ramesh Matra,
01:48who will will provide some commentary.
01:51Dr Batra is the director of the
01:54surgical Liver transplant unit
01:56in in participates in other
01:58transplants here at Yale. Oh
02:02and we will. Our speakers will talk
02:05from anywhere from 45 minutes or more,
02:08possibly an hour.
02:09We will have the rest of the time
02:12for for questions and answers.
02:14We ask that you submit your questions
02:17and comments to the Q&A. I will.
02:20I will moderate those and submit
02:23those to our speakers so we will
02:28just to let you know that we will.
02:31We have a hard stop.
02:32At 6:30, so if you have submitted a
02:35question and it gets to be 629 and we
02:38have not been able to fit your comment in,
02:41we apologize.
02:42But we do have to respect people's time so.
02:46Without further ado, I'm going to do.
02:48I'm going to turn it over to Doctor
02:50Lantos and to Martha Gershon,
02:52who have a wonderful presentation for
02:55us the the you see the title of their
02:59book here called Kidney to Share,
03:01which they, which they Co wrote.
03:04So please take it away.
03:05Thank you very much.
03:07Hey, thank
03:07you for that.
03:09A really nice introduction.
03:10Thanks to everybody for coming out.
03:12We love talking about this book.
03:15It was a labor of love.
03:17Martha and I are.
03:19Old friends and uh,
03:20when she told me a few years ago that
03:23she had decided to donate a kidney.
03:26We got into some very interesting
03:28discussions over coffee after religious
03:31services at our synagogue over beers.
03:35Uh, and the whole thing was a
03:39an interesting adventure and we
03:42wrote the book just because we
03:44thought the discussions might
03:45be of interest to other people.
03:47So we're thrilled that you
03:49invited us and look forward to
03:51some interesting discussion.
03:52What we try to do in the book and
03:55what we did in our conversations
03:57was sort of go back and forth with
04:00Martha going through the experience
04:02and finding some some quirky,
04:05some weird things about the whole.
04:06Test by which donors were evaluated
04:08and should come to me and I sort of
04:11try to put him in context at the.
04:13History of living donors and
04:15organ transplantation,
04:16and maybe some of the reasons why these.
04:21Unusual practices that we'll
04:22talk about still exist.
04:24Uh,
04:24and then the book goes back and
04:26forth between our two voices that
04:29between this sort of bioethics
04:30perspective and a personal merit.
04:32So that's what we're going to do today.
04:34Will try to end around 45 minutes
04:37because we love the discussion.
04:39But background, most people know this,
04:42uh,
04:42lots of people in the waiting list
04:44at 90,000 in the United States.
04:46Now if you're waiting for a cadaver kidney,
04:49it's about three to five years
04:51on the waiting list.
04:52A lot of people don't make it that
04:54long that a dozen people in the United
04:57States on the waiting list die every day.
04:59And uhm,
05:00some stopped dialysis 'cause it's too much.
05:03Some dive complications.
05:05And everybody wants a living donor.
05:07Living donors have better
05:09outcomes than categoric donors
05:11for all sorts of medical reasons.
05:13You can get better histocompatibility
05:16we can schedule the transplant
05:18and generally living donors are
05:21extensively screened and tend
05:23to be really healthy people.
05:24So for all those reasons.
05:27Uh,
05:27but there aren't a lot of people
05:29who want to donate.
05:30Here's here's numbers from.
05:332020 there were 17,000 donors altogether.
05:372/3 of them are a little bit more.
05:38Were kind of Eric donors.
05:41A little bit under a third were living
05:44donors and about 2/3 of those went
05:47to a spouse biologic relative life partner,
05:50either directly or through paired exchanges,
05:53which will talk about a little bit only
05:55about a third of the bold down there were.
05:58Either anonymous or or what Martha's
06:01was a directed unrelated and these are
06:04just I don't know what the others are,
06:06but these are numbers from from universe.
06:09Uh,
06:10people are trying really hard to
06:12get a living donor.
06:14And now,
06:15as I say,
06:17the pendulum has swung from deep suspicion
06:21and many transplant centers refusing to take.
06:25Unrelated people's as living donors too.
06:29Uhm, lots of heartwarming stories
06:32and lots of programs now encourage.
06:35People who need a transplant to go
06:38out and crowdsourced their search go
06:41online trying to drum up some business.
06:42There's articles in magazines like Good
06:45Housekeeping about how to do this,
06:47and it's becoming much more common.
06:53The transplant surgeons have made a
06:56big shift since even since the 1980s,
06:59but certainly since the early days
07:01of transplant in the earliest days,
07:03the only transplants that worked were
07:05from living donors from relatives.
07:07Uhm, but as immunosuppression got
07:11better as histocompatibility matching,
07:14that better came easier to
07:16take a stranger donors.
07:18But transplant surgeons were
07:20pretty ambivalent about using any
07:22living donor at surgeons. Uh,
07:24I don't like to operate on healthy people.
07:26Go figure. And, uh, uh,
07:30worry a lot about causing harm
07:32to someone who didn't have a
07:35health problem to start with.
07:37And in the early days of transplant,
07:39Rene Fox and Judith Swayze wrote this book,
07:41their medical sociologists who
07:43followed the pioneering efforts
07:45at at Harvard in the 50s, too.
07:49Understand immunology some of the
07:52terrible outcomes that people had,
07:55but they document how how surgeons said,
07:57you know,
07:58we don't want to operate on a
08:00living donor unless unless they're
08:01a relatively less their family.
08:03Because as they say in the book,
08:05this was judged to be healthy.
08:07Altruism derived from general moral concern.
08:11If you're trying to save a family member,
08:13but people who want to donate to a stranger,
08:17well, there was a lot of suspicion.
08:19The psychological benefits for living
08:22donors that made this come to be seen as
08:26healthy altruism were loving relationships.
08:28People would get greater self-esteem.
08:30They'd be seen as a hero by friends,
08:33family and classmates,
08:34and they helped the family.
08:36You know,
08:37if a family was taken care of,
08:39someone with chronic kidney disease
08:41who go to dialysis all the time,
08:44getting a transplant much
08:46better quality of life.
08:48But there was this question about
08:50whether people other people who
08:52donate to strangers or are just crazy.
08:55And then there's a task force in Canada
08:58near early part of this century.
09:01That wanted to make national
09:03policy and they did a study where
09:07they interviewed people who said,
09:08yeah,
09:09I'm willing to donate to a stranger
09:11and the title of their articles sort of
09:13captures its. Ambivalence, you know?
09:15Or are these people lunatics or Saints?
09:19And, uh,
09:20what they wrote in this paper
09:22is contrary to our fears.
09:24And apparently, to their great surprise,
09:26there are a significant number of.
09:30Psychologically stable altruistic Lee
09:32motivated individuals who want to
09:34donate a kidney anonymously to a stranger.
09:37And seek no material compensation in return.
09:44And that led to change in policy in Canada
09:48from skepticism about this to encouragement.
09:52Canada wasn't the only place where there
09:55was skepticism in the UK from 1990 to 2005,
09:59there was a law on the books UK human
10:02Organ Transplant Act that prohibited
10:05commercial dealing in organs and permitted
10:08donation noncommercial to anybody
10:10accepted genetic relatives say they were.
10:13So concerned that either the donors
10:16were crazy or that this must
10:19be some sort of coercion,
10:21some sort of under the table
10:23commercial transaction that they
10:25lumped those two together.
10:27The second half of that the prohibition
10:30on donating to someone who's not
10:33a genetic relative was challenged
10:35and eventually struck down by the
10:37UK Supreme Court in 2005, but.
10:41It's important to understand
10:44the history and the.
10:46Pervasive suspicion and distrust
10:48of people like the lovely woman
10:52you see there on your screen,
10:55Martha Gershon,
10:56who stepped up and decided that she
10:59was going to test the waters and
11:01donate to a woman she'd never met.
11:04You can decide for yourself tonight
11:07whether she's a lunatic or a St.
11:11I'm really glad we don't take a
11:13poll when we finish these talks.
11:15Thank you, John.
11:17In 2017 I was recently retired and
11:20had a little bit of time on my hands.
11:24I had written a book about
11:25children in foster care,
11:27which had been my my work for about a
11:29decade and I was reading the Kansas City
11:32Jewish Chronicle and read an article.
11:35The story was about Deb Porter Gil,
11:37a 56 year old woman who now
11:39lived in Fort Lauderdale, FL,
11:41but had previously lived in
11:43Kansas City where I live now.
11:45She had previously gone to the synagogue.
11:48Where I went where I met John.
11:51She had two children who had gone
11:52to the religious school there,
11:54as my children had and she was dying.
11:57Deb had been diagnosed with
12:00kidney disease in her 30s.
12:02She had very soon thereafter,
12:04been diagnosed with diabetes,
12:05and while she was still a graduate student,
12:08she was in law school.
12:09She received a cat avaric transplant
12:12kidney and pancreas from a 44 year
12:14old woman who died in a car accident.
12:17Someone who had not been wearing their
12:18seat belt, which is a very common.
12:22A generator of categoric organs.
12:26It had been 18 years.
12:27Debs.
12:28Pancreas were still going strong
12:29but her kidney was beginning to
12:32fail and as many of you know,
12:3418 years is a very long time
12:35for a cadaver kidney.
12:37Deb had been compliant with her meds.
12:39She'd been otherwise healthy and she'd hung
12:42onto that organ for a really long time.
12:45But now it was failing and doctors
12:47told her that she wouldn't live
12:49out the waiting list that if she
12:51had to wait three to five years
12:53to get another cat avaric kidney.
12:56She would die.
12:57So Deb, like the folks that John
13:00talked about in other ways,
13:02started looking for a living donor.
13:05Her siblings were not available,
13:08her parents were too old.
13:09Her young adult children had been adopted,
13:12and we're not a biological match.
13:15So she turned to the community.
13:17And when I read this story,
13:20honest to God,
13:22I thought I'm going to do this.
13:24It was.
13:26A bolt of lightning.
13:28It wasn't for sure I'm going to do this,
13:30but it was for sure.
13:31I'm going to try.
13:32This is something that spoke to
13:35me and it seemed very important.
13:39Now.
13:39You all need to know that like
13:42many other living organ donors,
13:44this was not a totally foreign idea.
13:47And often if you talk to living donors,
13:49you will hear stories like mine
13:52years before my favorite cousin
13:55in Omaha had needed a kidney.
13:57I wasn't a match,
13:59other family members weren't
14:01available award to match,
14:02but aunt's best friend was and.
14:05And received a living kidney
14:07donation from her best friend
14:09Cheryl Cooper at the University
14:11of Nebraska Medical Center in 2002
14:13and lived another nine years.
14:15Those were nine years when I got to
14:17see my cousin got to go to Omaha
14:20for Thanksgiving for Passover.
14:21I was at her two daughters weddings.
14:24She was at my son's bar mitzvah
14:25and my daughters bought mitzvah.
14:27My family and me personally benefited
14:31from nine more years when this lovely
14:35lovely woman because someone else
14:37had made the gift of a living organ,
14:40so I knew that being an organ donor
14:42doesn't just save somebody's life.
14:44It can change the entire
14:46trajectory of a family system.
14:49And while I haven't been able to help,
14:51and then I thought,
14:52perhaps I could help someone else now.
14:56Also, like many living donors,
14:57and again you will hear
14:59this story over and over.
15:00I've been a regular blood donor
15:01throughout my life and in fact I had
15:04been registered to be a bone marrow
15:05donor and miraculously years before
15:08I had matched with a 6 year old
15:12girl to be her bone marrow donor.
15:14That never happened.
15:16Something interrupted that process.
15:18I don't know what HIPAA.
15:21Lives and they don't tell you very much.
15:23She died.
15:23She got better.
15:24Somebody was a better match,
15:26but once before in my life I had had
15:28that miraculous feeling that I could
15:31save someone else's life with my body.
15:33And when I read about Deb,
15:35I had this sense of maybe I
15:37could recapture that feeling.
15:39Maybe I could do it again.
15:42I always want to tell people that
15:44medically this was a fairly easy thing to do.
15:47I'm not afraid of needles.
15:49I've had surgery before they took
15:51out my gallbladder once before they
15:52took something out of my abdomen.
15:54That part went well.
15:56That part was easy.
15:58The folks at Mayo are brilliant and they can
16:01do pain management like nobody's business.
16:03But the logistics were ridiculous.
16:07There were things about
16:09the system that were hard.
16:11I thought stupid.
16:13I thought possibly offensive,
16:15and because I'd studied customer
16:17experience as a Business School
16:19student because I'd spent my
16:21career in service operations.
16:22This was something that I felt I might
16:25be uniquely positioned to talk about,
16:27both as a donor and with some
16:29academic and professional experience.
16:31And that's one of the reasons that
16:33John and I paired up was to see if we
16:36couldn't possibly make a difference.
16:37In the system.
16:39So I'm going to tell you very quickly
16:41about three things that happen to me.
16:43If you all are like the folks we
16:44talked to at other medical centers,
16:46you are going to tell me this.
16:47Never,
16:48ever ever would happen at your clinic and
16:50never ever ever happen at your hospital.
16:52And while I'm inclined to believe you,
16:55I will also tell you that while people
16:57tell us that all over the country I
17:00hear routinely from living donors
17:01who are on these calls and webinars
17:04that similar things happened to them.
17:06So here are my very quick three examples.
17:10The first is that on the intake form
17:13I disclosed that I occasionally
17:15spoke back recreational pot.
17:17It's not legal where I live,
17:18but it's legal in Colorado,
17:19which is just a hop,
17:20skip and a jump from my home in Kansas.
17:22My husband of I and I've been on vacation.
17:24Yes, I'd smoke some
17:26recreational pot and this.
17:29Was horrendous to the folks
17:31at the transplant center,
17:32and in fact before they would even
17:34test my blood to be sure that I was a
17:37histocompatibility histo compatible match,
17:39they asked if I would consent to
17:41speak to a substance abuse counselor.
17:43This was very annoying,
17:44but I said sure I was
17:46trying to save Deb's life.
17:48I wasn't in the business
17:49of making this difficult.
17:51I didn't want to be a difficult patient.
17:53Well, it turned out that substance
17:55abuse counselors are in very short
17:57supply at this particular clinic.
17:59And when I went up for my three
18:02day medical psych evaluation,
18:03they couldn't find an open appointment
18:05with a substance abuse counselor.
18:08They wanted me to come back and this
18:10clinic is 6 hours from my home at my expense.
18:15Another night on the road,
18:17another hotel for a one hour substance
18:20abuse appointment because I had disclosed
18:23I occasionally smoked a recreational joint.
18:25This didn't stop me from donating, but I
18:29couldn't help but wonder what if I weren't?
18:34Middle class?
18:35What if I weren't highly educated?
18:37What if I weren't used to
18:39advocating for myself?
18:40What if I weren't white?
18:42Is that the kind of thing that might stop
18:45someone from pursuing living organ donation?
18:49And later John is going to show you some
18:51data that will show you that in fact it is.
18:54Similarly,
18:54I just closed on the same form that I
18:56sometimes some mental health professional.
18:58There's a psychologist in Kansas
19:00City who's been very helpful to me.
19:02Help me decide when it was time to retire.
19:04Helps me untangle when I get up in
19:07knots about my family of origin.
19:09Very helpful. Life coach.
19:11This was terrifying.
19:12Did this mean I was crazy to this?
19:14me and I was unstable that I
19:17shouldn't donate and they demanded
19:19that my entire mental health file
19:21be faxed up to the clinic.
19:23And my therapist said no,
19:25that we don't do that,
19:27that my records are private,
19:29that this was not an issue that
19:32once it went to committee,
19:34she couldn't guarantee that it wouldn't
19:36somehow crossover into my recipients
19:38file and instead she wrote a letter
19:40saying I didn't have a clinical diagnosis.
19:42And in fact she thought it would be
19:44fine for me to donate as it turned out,
19:46the clinic accepted that.
19:48But again, think about someone
19:51without my really extraordinary.
19:53Privilege being told that if
19:55they'd ever seen a therapist,
19:57they had to jump through extra hoops.
19:59You can see how people start
20:01to back out of this process.
20:04My last story and I really
20:05commend the book to you,
20:06both because it's a fun and interesting book,
20:08but also 'cause this story is even
20:11better when you read about it.
20:12Sure,
20:13many of you know that 30 days
20:15prior to any living organ donation,
20:17the donor must be tested for HIV,
20:19AIDS and hepatitis.
20:20We do not want to transplant organs that
20:23might be infected into someone who's about
20:25to be flooded with immunosuppressive drugs.
20:28That makes all the sense in the world.
20:30What makes a lot less sense is that
20:33the way we do this for remote donors,
20:36as I was six hours from the clinic,
20:38see that box? That's the box that
20:40got shipped to my house and it said.
20:42Please have your doctor draw blood in this
20:46file and ship it back to us on dry ice.
20:50Well, I don't know about all of you,
20:51but I didn't know how to get dry ice.
20:54I didn't know how to ship on dry ice.
20:56I googled it and what I learned is that
20:58if you don't pack dry ice properly,
21:00it expands in the air and blows
21:02up the airplane.
21:03This was not reassuring.
21:05I called the Mayo Clinic.
21:08They didn't know how to ship on dry ice.
21:09They said your doctor will know.
21:11I called my doctor.
21:12My doctor said we've never shipped
21:14anything and rice in our lives.
21:15You're on your own.
21:17It took me two days to find a.
21:22Industrial purveyor of transportation
21:24dry ice pellets who was certified
21:27and understood how to pack it.
21:30I had to find the one FedEx depot
21:32in my entire metro area that would
21:35even accept dry ice packets.
21:37I had to learn to ship it.
21:39I had to coordinate with my
21:40physician to make sure all of this
21:42could be done in a timely manner.
21:43In the end I took two days of my
21:46life to get my blood on dry ice
21:49shipped up to the clinic within my
21:5230 day window and when I called and
21:55said do we have some other options?
21:56They said, well, you can come three days.
22:00Before your surgery so that
22:02we have time to run the test.
22:04Well, that wasn't going to work.
22:05They said we can draw blood the
22:07morning of your surgery and hope
22:09we get the results back in time.
22:11Well that wasn't gonna work.
22:14There were so many logistic
22:17barriers over something.
22:18Honestly, that should be very simple.
22:20I don't understand why every transplant
22:22clinic in the country doesn't have an
22:25automatic relationship with the national
22:26shipper to manage dry ice things,
22:28but we push these barriers.
22:31We push these burdens onto the donor.
22:35The one person in the transplant
22:37process who literally has nothing to
22:40gain transplant clinic makes money.
22:42On the transplant,
22:43Medicare or the private insurer
22:45saves a lot of money.
22:46As you all know about $150,000
22:49over the life of the kidney patient
22:51transplantation over dialysis,
22:52certainly the recipient and their
22:55family benefits a great deal,
22:56but the one person who's just trying
22:59to do a good deed ends up with
23:02all of these stigmas and barriers,
23:06and hoops that honestly it kind of
23:10took everything I had to jump over.
23:13And particularly at a time when
23:15we know that the
23:16greatest need for kidneys is from black
23:19and brown donors to help low income,
23:22people who are much more
23:24impacted by kidney disease.
23:25If you were trying to save the
23:27life of your mother of your sister,
23:30what does it mean to have these
23:32barriers thrown in front of you?
23:34So John will tell you some more about that.
23:39So we started looking at barriers.
23:42We started looking at ways to increase
23:45the supply of organs and the book
23:48spend a little time analyzing a bunch
23:50of different policy changes that
23:53have been proposed over the years.
23:56We'll talk about those a little bit,
23:58opt out versus opt in markets,
24:02including perhaps chains and vouchers,
24:06will talk about that a little bit,
24:07and then the one that's.
24:09More directly related to Martha's
24:10experience and that we end up in the book.
24:13Uh, really spending some time on.
24:15Although in any of the discussions we've
24:17had over since the books been published,
24:20people want to talk more about markets, but.
24:23Start with the opt out versus opt.
24:26In some countries in the United States,
24:30if you want to be an organ donor,
24:31you have to check the box on
24:33your driver's license. In Spain,
24:34if you don't want to be an organ donor,
24:36you check the box on your drivers license.
24:39If you don't check the box,
24:40you're presumed to be consenting.
24:44Croatia does the same thing,
24:45and these two countries have the
24:47highest rates of kind of error.
24:49Organ donation in the world.
24:51Would that work here?
24:52Does it work?
24:53There because the policy change.
24:56Or does it work there because
24:58they have the kind of culture
25:00that would support that policy?
25:02We just don't know the United
25:04States is big and complicated.
25:07It would be interesting if some states
25:09decided to try a pilot project of opt
25:12out versus opt in both in terms of
25:15whether it would increase organ donation,
25:17but also whether it would
25:20be politically acceptable.
25:25These opt out versus opt in count,
25:27sort of as as nudges as ways of moving
25:30from complacency or the status quo to
25:33nudging to concern the Nuffield Council
25:36on bioethics sort of looked at sort of
25:38a range of ways that you might change
25:41behavior from down at the bottom here,
25:43doing nothing too at the top,
25:45eliminating choice entirely,
25:47and then somewhere in the middle guiding
25:51choice through changing the default.
25:53Which in most places is below
25:56the line of acceptability.
25:57Guiding choice through incentives
25:59gets over into markets.
26:00Eliminating choice entirely would probably be
26:05unacceptable in most democratic societies.
26:09One of the big innovations of the
26:11last 25 years has been these paired
26:14exchanges or chain donations.
26:16Most people are probably familiar
26:18with them now.
26:19I want to give to a loved one and
26:21somebody else wants to give to Laughlin,
26:23but we're not compatible.
26:25We give to each other's loved one
26:28as illustrated in this slide here.
26:30Uh, we didn't.
26:31I didn't know when we wrote this
26:34book and learned through the process
26:36that the idea for this was developed
26:39by an economist named Alvin Roth,
26:41who's a professor at Stanford now,
26:43and that Roth won the Nobel Prize
26:46for in economics for proposing this.
26:49He clearly saw this as a market innovation.
26:53It's a barter market, he says,
26:55and he sees nothing wrong with that.
26:57In fact, he's advocate advocating now for.
27:00A pilot studies of regulated markets
27:04that involve cash exchanges,
27:06but those haven't gone anywhere
27:08in most of the world,
27:10and so he proposed this alternative
27:14apartir market.
27:15So now grown from paired
27:17exchanges to elaborate chains,
27:19the longest is now longest
27:22reported was 60 people 30 donors,
27:2630 recipients.
27:27It was reported in the New York Times once.
27:31Once you start doing chain donations,
27:34donor ones,
27:35recipient 210 or two to recipient three,
27:37it can breakdown and it may be the
27:40last recipient doesn't have a donor
27:44and so people have started to talk
27:46about giving the first owner of voucher
27:49voucher or future donation that starts
27:51to look a little bit more like a market.
27:54Vouchers seem more like
27:56cash then the kidney does.
27:58Furthermore, in some programs.
28:01Like National Kidney registry,
28:03you can get vouchers.
28:05You can get five vouchers that you can
28:07give to your loved ones so they go to
28:09the head of the list instead of you.
28:11Each of these is nibbling away
28:14at this opposition to markets
28:16and raises the question about.
28:19What's what's so wrong with
28:21the markets anyway?
28:23And this has been a vigorous debate.
28:26Since the beginning of transplantation.
28:30And, uh, it's interesting too,
28:33because it's not the case that
28:35you can't sell any body part.
28:37There's a whole bunch of body
28:38parts you can sell.
28:39Eggs, firm breast milk, bone marrow,
28:42blood, and plasma hair.
28:45Uh.
28:46You can rent your womb if you're a woman.
28:49Uh,
28:49these are all legal,
28:51and it's also true that.
28:55Allowing markets would show respect
28:58for autonomy in principle that most
29:01bioethicists usually endorse adults of sound,
29:03mind and body have a right to do
29:05what they want with their own body,
29:07and in this case allowing them to.
29:11Not just donate, but maybe incentivizing
29:13them by offering payment would probably at
29:17least proponents of markets they save lives.
29:20Another argument is consistency.
29:23Donating a kidney is a lot safer than many of
29:28the other things that we allow people to do.
29:30For money.
29:31We document a few of them on this slide here,
29:36and there's an article in a law review.
29:38Few years ago we allow football
29:40players and boxers.
29:42To be paid for entertaining,
29:43why not allow kidney donors to
29:45be paid for saving lives when
29:47as they document in this paper?
29:51The risks are much lower than.
29:56Being a lineman or any professional
29:59football player for that matter.
30:01On the other side, and this has been a
30:06debate that's been a stable and tide and.
30:10Nobody landed a knockout blow yet,
30:12well, the people against markets.
30:14I guess we're winning.
30:16The two big concerns are coercion
30:18and exploitation coercion,
30:20which people coercing poor people
30:22into giving up their organs
30:24when they don't really want to.
30:26The question is whether money
30:28is in fact coercive,
30:29or instead merely incentive.
30:31But then there are all these more vague
30:35concerns about exploitation objectification,
30:38instrumentalization,
30:39commodification of the body, all of which.
30:45A trouble many bioethicists and policymakers.
30:49In fact,
30:50there are only a few countries
30:51in the world that have legalized
30:53markets in the kidneys.
30:55Most most have strict laws against that.
31:01Come with that as a.
31:05Uh,
31:05some of the ideas about ways that
31:07people have talked about increasing
31:08the supply of organs will get
31:10to the end of Martha's store.
31:14Well, despite the barriers and
31:17there were many more than than
31:21I mentioned earlier, Devin,
31:23I did in fact have a successful
31:27kidney transplant experience.
31:29Not the first time when I first went
31:33up to the Mayo Clinic to donate.
31:35My kidney went through a whole
31:37day of last minute assessments.
31:39The things you do at the very
31:41end went back to the hotel,
31:42chugged the laxatives to cleanse
31:44me out for the next morning.
31:46My phone rang.
31:47It was the nephrologist
31:48on call at the hospital.
31:50They had checked Deb in a pre
31:53surgery and she was too sick and
31:56they were calling off the surgery.
31:58This was another time when
32:01my role in this process was
32:06problematic because of HIPAA.
32:09The Pharology Fellow couldn't
32:10tell me anything about Deb.
32:13I asked if I could talk to her.
32:14He said she's crying too hard.
32:16She can't talk to you on the phone.
32:17I said. What am I supposed to do?
32:19Am I supposed to drive home?
32:21He said I don't know.
32:22I I don't know what you're supposed to do.
32:24I know how to take care
32:26of the patient here come.
32:29He said I,
32:30I think in the morning you
32:32should call your call your nurse
32:35coordinator and ask what to do.
32:37This of course was very sensible advice
32:38'cause I don't know what I was thinking.
32:40I literally just chugged an
32:41entire bottle of laxative.
32:43I really was not getting in the
32:45car to drive home but it kind
32:47of tells you where my mind was.
32:49UM,
32:49and in fact I did in the morning
32:52called called the Nurse Coordinator.
32:55The clinic was very confused
32:57about what to do with me.
33:00They understood how to take care of death,
33:02but they did in fact get her well.
33:06The issue was a shadow on a lung X-ray.
33:09They were concerned it was an infection.
33:11Once again,
33:11you can't flood someone's
33:12immune suppressants if they have
33:14an active lung infection.
33:15It turned out it was fluid retention.
33:18Her kidneys really were failing
33:21at that point and once they
33:23put her on mega diuretics,
33:25they were able to clear it up.
33:29But they kind of forgot about me
33:31the other half of this transaction.
33:34My husband and I did drive back home.
33:37I couldn't just stay in a hotel in Rochester,
33:39MN.
33:39UM,
33:40the hospital call to tell me that
33:43Deb was better and that they
33:46were rescheduling the surgery
33:48and they would confirm on Monday
33:51afternoon that we were good to go.
33:54They were going to do some last
33:55minute tests on Deb and could I
33:57please be there Tuesday morning
33:59for early morning labs?
34:00And I said,
34:00do you want me to drive through the
34:02night and they said, what do you mean?
34:04I said, I live in Kansas City.
34:06I am 6 hours away from you.
34:07What do you mean you're 6 hours away from us?
34:10They had lost track of me even
34:12though my chart had said Kansas City,
34:15even though I had been working
34:16with them for nine
34:18months. On this process.
34:19The fact that I wasn't just a part
34:22on a shelf, but that this kidney,
34:24that they needed was in a living
34:26body who had a life in a place
34:28called Kansas City was problematic.
34:30It was one of the most stark examples
34:33of what we talked about in the book
34:36between the unique role of living
34:38donors that we are both patient.
34:40Medical patient surgical patient
34:42and part of the supply chain,
34:45but we're not the kind of part of a supply
34:47chain that just sits in a box on a shelf.
34:49We move around.
34:50We have our own life and I don't think
34:53systems have really come to terms with
34:56this very specific and very unique role.
34:59We have our patient channel or really
35:01good at that we ever supply chain channel.
35:03We're really good at that
35:05our vendors or suppliers.
35:07But living donors are in the middle.
35:09They are one of the most ambiguous
35:12players in the medical system.
35:14Well, as it turned out,
35:16the clinic reschedule the surgery.
35:18I kind of said I wasn't going
35:19to drive through the night.
35:20I thought that was a good way
35:21to get in a car wreck and create
35:24a two kidney donor opportunity.
35:26They moved the surgery so that I
35:28would have time to drive during
35:30the day to get to the clinic.
35:32And our second surgery attempt was
35:35successful and the picture you see
35:37was taken the day after surgery
35:39at the foot of that bed is a Ivy
35:41bag filling with golden urine.
35:43My kidneys perfused with blood immediately
35:46even before Deb was stitched up.
35:48And it started manufacturing
35:50your own immediately.
35:51So our surgery was a success.
35:55Deb and I, both three years out,
35:57continue to do extremely well.
35:59I actually talked to her
36:00on the phone yesterday.
36:01She's in Fort Lauderdale, FL.
36:02Hunkered down.
36:03From COVID the problem,
36:05many living organ donors have that
36:07their immunosuppressive regimen makes it
36:10hard for them to respond to the vaccine.
36:12But she's she's doing great.
36:14She's chipper as ever and.
36:18It worked the miracle of organ
36:21transplantation is that we were
36:24able to save someone's life.
36:26Someone who three years out
36:28from that stark diagnosis.
36:30You need to go on the kidney transplant
36:32waiting list was supposed to be dead
36:34is not dead because of scientists
36:36because of medicine and because of me.
36:42One of the reasons I wanted to write
36:45the book. Coerced John into writing
36:46a book that we wanted to write.
36:48The book together is that this opportunity
36:51should be more available to more people.
36:53It's one thing to want to
36:54save the life of a stranger.
36:56To do a good deed, to have that that
36:58very satisfying feeling of saving a life.
37:01But many people who do this are trying
37:03to save the life of a loved one.
37:042/3 of the people who do this are
37:07trying to save a child a parent,
37:09a sibling, a spouse,
37:11and the barriers that crop up
37:14and make this hard.
37:16Are preventing people from
37:18saving the lives of loved ones,
37:21and those are the system adjustments
37:23that we hoped we could advocate for.
37:26John will tell you some of
37:28our specific recommendations.
37:31Uh, yeah, no, you didn't coerce me.
37:33You promised me that we'd make
37:34a lot of money writing this.
37:36I gave you a voucher, yeah? Uh, so, uh?
37:41We end up talking about three different
37:43kinds of barriers and and it's interesting
37:45even since we started writing this,
37:47and even since it's been published, it
37:49seems like there's sort of critical energy.
37:52Happening around the whole world of
37:54living donors where where things are
37:56starting to change. Uhm? But, uh.
38:00The changes have to take place,
38:04or at least issues need to be addressed
38:06in these three different areas. I mean,
38:09the first is the medical screening, that's.
38:12Seems like the most straightforward,
38:14although raises some interesting ethical
38:17issues. Most transplant centers.
38:22Award themselves the absolute right
38:24to decide whether someone is low
38:27enough risk to be a kidney donor.
38:29This goes back to this.
38:33Concerned that surgeons had about
38:35operating on a perfectly healthy person.
38:37They wanted to know arm and that
38:40means that they want to make
38:42sure that kidney donors have.
38:44No health problems.
38:45I was kidney donors have
38:47no problem with that.
38:48And like the idea that
38:50they're being screened.
38:52Uh and and told about the risk,
38:53but there may be situations where
38:55someone wants to donate to a loved one,
38:57but they are deemed to be too high.
38:59Risk.
39:00It raises questions about autonomy,
39:02just like the organs of markets
39:04do think about who who should
39:07ultimately have the call about.
39:09How much risk is acceptable risk?
39:12Martha talks in the book a little bit
39:15about a discovery in her pre op eval
39:17that she her blood pressure was a
39:19little borderline elevated and they said,
39:21you know,
39:21if you can't get that.
39:22Under control.
39:23You're not gonna let you be a donor.
39:26She did get it under control,
39:28but what if she hadn't and still
39:30wanted to be a donor who?
39:32Who would have the right to say that's an
39:36acceptable risk or a inappropriate risk?
39:39Psychosocial stuff is even more
39:41interesting way of passage in the book.
39:43Written by a psychiatrist who
39:44was one of the people who worked
39:46with the teams in the 1980s.
39:47Charged with evaluating the mental
39:50health of these people who came
39:52forward and said they want to donate
39:54to a stranger and he recreates
39:56this long interview that we did
39:58with the young woman who said,
39:59you know, I just want to.
40:01Help someone out. I have two kidneys.
40:03I only needed one and UM,
40:06the level of distrust and
40:08suspicion is palpable in this week.
40:11We quoted at length in the book
40:13that same distrust is what I think
40:17we think they had a Mayo Clinic
40:21to demand that Martha talked to a
40:24substance abuse counselor 'cause
40:25she likes to get high in Colorado
40:28once in awhile or fax all of
40:30her mental health records.
40:32Because she occasionally seeks some.
40:34A psychotherapy,
40:36but those seem both archaic in the
40:40sense that they reflect this prior
40:43deep suspicion that you need owners.
40:47Or people who want to donate to a stranger.
40:51Are are psychologically suspect
40:54and need to be cleared.
40:57By experts in the field,
40:59but they're also not very evidence based.
41:02I mean,
41:03the idea that a substance abuse
41:05counselor or psychologist and a one
41:08time visit could figure out who's going
41:11to have a bad psychological outcome.
41:14Does it flies in the face
41:15of everything we know about
41:17psychiatrists or psychologists?
41:19Ability to prognosticate that
41:21who's who's really at risk for
41:24future of mental health problems.
41:27People often cite the fact that
41:29some donors have committed suicide.
41:31After donation,
41:32there are a couple of case reports,
41:35although in the only ones that I could find,
41:39the two case reports both
41:40of the donors who committed
41:42suicide afterwards were screened by
41:44psychologists before the donation
41:46and were judged to be fit to donate.
41:48So it's an imperfect science at best.
41:52The final set of barriers
41:55are our financial barriers.
41:57Everything from shipping the dry ice
41:59to making extra trips up to mail.
42:01These are not reimbursed.
42:03All the medical costs are reimbursed
42:05by the recipient's insurance,
42:07but the out of pocket costs, the motels,
42:10the last work the cat sitters,
42:14the babysitters meals.
42:17These are expenses for the donor
42:20and Martha and on her husband Don
42:23calculated that they were at about
42:25$5000 through the whole process.
42:28Of donation now. This could have.
42:31Real world consequences.
42:32It's hard to find studies looking
42:35at how many people drop out of
42:36the process of being evaluated,
42:38but there was one abstract presented at
42:41a meeting in 2017 where they looked at
42:44everybody who started started the process.
42:46They had about 1000 people say,
42:48yeah,
42:49I'm interested in being a donor
42:51of those about a third.
42:53The donor just dropped out or
42:55didn't show up at a third were
42:57ruled out for medical reasons,
42:59and in the end only about 15% of the.
43:031000 went on to dominate,
43:05but bolded there is the concern that the
43:08rate of people who ended up donating
43:10was twice as high among white people,
43:13Caucasians and among African Americans.
43:16Whether that's medical problems,
43:18whether that's psychosocial problems.
43:20This study didn't show,
43:22but it's possible that some of
43:25these psychosocial barriers are
43:27discouraging people who might
43:29otherwise want to donate.
43:32There is some limited help for donors.
43:37CMS as a program called National
43:40Living Donor Assistance Center,
43:41it's been around for about 10 years.
43:44It's a means tested program
43:46and somewhat quirky.
43:48Quirkily oddly means that it's tested
43:52is the recipient's household income.
43:55And if the recipients
43:56household income is low enough,
43:58then the donor can get lost.
44:00Wages, travel costs and
44:03dependent care needs covered.
44:05It's hard to imagine the subcommittee
44:08that developed that policy,
44:09but there must have been some thought
44:12that if the recipient had enough money,
44:14they should pay the donor.
44:16And in fact, in Martha's case,
44:17that that's exactly what happened to Deb.
44:20Deb's family reimbursed.
44:23Uh, all the expenses, but why should it be?
44:27Means tested,
44:28why should it be up to the donor to do that?
44:33There is a nonprofit organization,
44:34National Kidney Registry started
44:36by someone who did a paired
44:39kidney exchange and they only.
44:42Do paired and chain donations
44:45they've facilitated many of them?
44:47Uh, they contract with transplant centers
44:51to help them increase the supply of donors.
44:54They're funded by philanthropy and
44:57they will provide lost wages, travel,
45:00lodging, and even donation, insurance,
45:03life and disability for people who agree to.
45:08Enter their program and participate
45:11in a paired or a chain donation.
45:14But again,
45:15why should non profits fill the gap on this?
45:19If we think that living donors are better,
45:22we know that there's not enough of them,
45:25and we know that there are
45:27expenses associated with donation.
45:29Why isn't it national policy that they
45:32at least come out financially neutral
45:35rather than losing money for their?
45:39Active altruism we finished the book
45:43with this modest proposal that, uh,
45:45donors should be treated like donors.
45:48That is,
45:49people who give a kidney should be
45:51treated like people who give money
45:52and we all know that hospitals are
45:54very good at taking excellent care,
45:57coddling people who give them
45:59money at honoring them with the
46:01hall of benefactors in a prominent
46:03place in the hospital,
46:05they are lauded their applauded.
46:07They are rewarded with perks.
46:12For donating VIP programs and the like.
46:17Whereas a organ donors as
46:20much at least in part,
46:22this story and the experience,
46:23retail and stories we've heard from
46:26many other people are not even treated
46:28as well as patients in many cases
46:31and are treated more as she said.
46:34Like part of the supply chain.
46:37So this would just take a mindset shift.
46:40It wouldn't take a policy shift to do this.
46:44Getting money, changing the screening.
46:47Process might take at least
46:50institutional policy changes,
46:51if not national policy changes,
46:53but it seems like we're at the point now,
46:56where sort of the past of distrust
47:00of donors is over.
47:01Places are courting donors.
47:03They realize that this is a
47:07safe procedure when done right,
47:08and it saves lives and so figuring
47:12out ways to treat donors better.
47:15A scene should be a national urgent priority.
47:19With that we will stop and.
47:24Be happy there.
47:27Alright, Doctor Botcher is going
47:29to make a few comments. Well
47:30actually before Dr. Batra talks,
47:32I just want to remind everybody
47:35that continuing medical education
47:37credits are available and if you
47:39look in the chat you will see I
47:42think you can look in the chat.
47:44But anyway the the texting
47:46code for today's session is
47:5030715 attendees who would like may
47:52need to sign up for a Yale CME account
47:56and then record your attendance.
47:58Do that 15 well within 30
48:02minutes after tonight's meeting.
48:05And now Doctor Ramesh Batra has a
48:07few words to say he is a director
48:11of the liver transplant plantation
48:13service here at Yale and performs
48:16other transplant surgeries. Dr Batra.
48:20And so look at the used and I
48:23want to applaud Martha and John
48:26for sharing their experiences in
48:28story and really saving a life.
48:30Some of the great job over there.
48:32I wanted to like put a quick
48:34commentary to what is being presented.
48:37I mean, I agree that US has been
48:39behind other countries in terms of
48:41making it easy for living organ donors
48:43to help a stranger or a loved one.
48:45Probably because USA is a much larger
48:47geographical territory than others,
48:49but I'm sure there is politics.
48:50So that as as you can always imagine,
48:52but as you see that you know,
48:54stand other organizations have really
48:56stepped up the game in the last
48:58decade by removing the financial
49:00discontent Centers for living donors
49:02through the deck that you said.
49:04But obviously there is a ceiling to it,
49:06but especially when that is not enough,
49:08other organizations step in,
49:10and now there are indirect financial
49:12incentives by many states like tax
49:15credits or discounts on insurance
49:18premiums further on that.
49:20Corporate organizations like Optum Health,
49:23which is one of the largest pair
49:25for transplant,
49:25is using their corporate influence
49:28and corporate responsibility
49:29while launching Hero program.
49:31What that does is it compensates
49:33living organ donors for wages,
49:35travel lodging as donors donated
49:37organ to one of their employees.
49:41So hopefully this attitude will infect
49:43other corporate organizations besides
49:45the state and the federal government.
49:48And lastly,
49:48I want to say that there was a recent living.
49:51Election Act passed in 2021,
49:53both in the Senate,
49:55in the House that prohibits
49:56discriminating living organ donors
49:58and accessing life insurance policies,
50:01which was much harder to get
50:03or higher premiums were there.
50:04So as we see that the spotlight on
50:06living donation is now on more than ever,
50:09so hopefully this will keep going
50:12in that direction.
50:13So I had a question for you now,
50:17and I'm running one of the studies at
50:20Yale trying to balance donor autonomy.
50:23Physician paternalism and I wanted
50:25to hear your perspective on that.
50:28How does one balance donor autonomy
50:31with physician paternalism indecisions
50:33regarding living organ donation as
50:36currently medical privilege obviously
50:38supersedes donor autonomy in decisions
50:40regarding the suitability to donate,
50:42specially knowing that.
50:44Ten years ago,
50:46what we would say that living donors have
50:48no risk of developing kidney failure,
50:50but that's not true.
50:51The study in 2014 from Hopkins showed
50:54that the median time to develop
50:56end stage renal disease can be 7.6
50:59years for even healthy living organ
51:02donors or living kidney donors.
51:04So the risk is not zero.
51:06How do you think we balance that?
51:08Especially when you have like being
51:09on both sides of the fence and seeing
51:12their perspective of the story and
51:14John my question to you would be.
51:16Regarding the opt out scheme,
51:18uh,
51:18how does USA you think goes from
51:21opt in to opt out from your ethical
51:25standpoint when a qualitative
51:26study from Europe comments,
51:28if I donate my organ it is a gift
51:31and I'm quoting this.
51:32And if you take them, it's a theft.
51:35How can that don't be soft and so
51:37that it doesn't appear authoritarian
51:39by the government and doesn't
51:42malaligned the donor economy.
51:44Let me just start the stage and
51:45then other questions could come
51:47in. Good start. So
51:50why don't I?
51:51I'll tackle your questions first,
51:52but I did also want to tag
51:55to your comment about Optum.
51:57United Healthcare really does
51:58have the very best program to
52:01help to help living donors because
52:03it's not just reimbursing way,
52:06not reimbursing expenses.
52:07It's also lost wages, which again is
52:10a tremendous burden for many people.
52:12I was retired, my husband is an executive.
52:14He could take time off,
52:15but there are plenty of people at
52:17hourly jobs for whom the lost wages
52:20alone are sufficient disincentive.
52:21To not be able to step up and
52:23save the life of a family member.
52:26On the question of patient
52:28autonomy versus paternalism,
52:29that is a place I would give
52:31the Mayo Clinic in a plus,
52:33the nephrologist that I worked
52:35with was an extraordinary man,
52:37and as John mentioned in my
52:39three day work up,
52:41we found out that I had borderline
52:43hypertension and John didn't mention it,
52:45but also that I had
52:47borderline high blood sugar,
52:49high glucose levels I had had gestational
52:51diabetes with my second pregnancy.
52:52I've always known that was a risk,
52:55and I was like 3 points over on each right.
52:58Not a lot over if I weren't
52:59trying to donate a kidney.
53:01I don't think anybody would
53:02have worried about me,
53:03but was I in good enough shape that I
53:06could be down at kidney and still be fine?
53:09I give the clinic a lot of credit for
53:12giving me significant information,
53:14a lot of time to process that
53:17information and a lot of choice and
53:19how we moved over and and they and
53:22they gave me 3 very clear choices.
53:24You can back out now.
53:25Always that mean they tell you that
53:28every minute you're talking to someone.
53:30If you want out now will cover for you.
53:32Your recipient will never know what happened.
53:34They said we can stop now if this scares you,
53:37we can stop now.
53:38They said you can go home and try
53:40and lose weight for three months
53:41and then come back and retest.
53:43I said no woman in her right mind
53:45wants a three month deadline to try
53:46and lose weight to save someone's life.
53:49That will make me crazy.
53:50No,
53:50they said we can give you a
53:53pediatric dose of a hypertension
53:55medication and we can retest in two
53:58weeks and we can give you a more
54:01sophisticated blood glucose level test.
54:02I took that path.
54:04The blood glucose came in fine.
54:06I knew it would make my agency
54:07has been fine for years,
54:09so I knew that wasn't going to be a problem.
54:11UM,
54:11and in fact the the drug I took
54:13did did lower my blood pressure.
54:15I stay on it today.
54:17I think I'm healthier because I stay
54:19on that drug because I donated a kidney.
54:23But I felt like I had a lot of
54:25say in that I didn't have any
54:27say about the logistics.
54:28I didn't have any say about the scheduling.
54:30I didn't have any say about
54:32the things that impacted
54:33my. Real life, but things that
54:35impacted my medical life.
54:37I felt that that they
54:39handled it extremely well.
54:41I hope it's that good across the board.
54:47Yeah, you wouldn't have had a
54:49say if you hadn't been able to
54:51get your blood pressure down or
54:53your glucose down and. When they.
54:56Forget what the committee is called.
54:58I remember you were waiting by the
55:00phone to see if you'd been approved
55:01as a donor, but if they said no.
55:06So I think that's too high.
55:08I think every program acts and
55:10reacts very differently because every
55:12program has had different experiences.
55:14People have had bad experience.
55:15They tend to really fold over because the
55:19environment is very tightly regulated.
55:22One bad experience could really
55:24shut the program down if they've
55:26had too many bad luck like those
55:29suicides or accidents that happen.
55:30So I think it just goes to how the
55:33center has been doing it before,
55:35including the physicians.
55:36Better practicing it so it's kind of
55:40variable amongst across the country.
55:43It's interesting to say that,
55:44but I have to tell you if I went into
55:46end stage renal disease and died mixture,
55:48I don't think anybody would report
55:50that back to the Mayo Clinic.
55:52How would they even know?
55:54So all living donors?
55:56Well, at least in USA,
55:58all the outcomes are looked
56:00at for one year outside US.
56:02And I know when I trained in England
56:04your outcomes are senior living
56:06donations until the life your life.
56:08So all those things are documented
56:10now from a living donor standpoint,
56:13if you had an issue like
56:14that within the first year,
56:15which is much higher then then
56:18you can see how those things can
56:21really affect the publicity.
56:22Or the practice of that center,
56:25specially when you may have the best
56:28family support others who may not.
56:31May really take this into a some
56:34different kind of a monster.
56:37Which which has happened.
56:41I wonder too, if a program still
56:45use different criteria for related
56:47donors versus unrelated donors
56:50in terms of acceptable risk.
56:53Hard to get those data, but I mean if
56:55a mother is trying to save her child.
56:58There are blood pressures.
57:00Three points above the threshold.
57:03They may say like well.
57:05That's OK. 'cause
57:08like when we are doing this study,
57:10it will help understand that.
57:12And one of my partners have actually
57:14done that study on kidney donors
57:16to see where the balance is.
57:18Because if you have a family member
57:20who's having dialysis three times a week
57:22and you have to drive them to dialysis,
57:25it's affecting your life.
57:26You want to take on as much risk
57:28as possible to really avoid seeing
57:31your purse or your loved one die,
57:33or really wither down.
57:35As they did,
57:36you might want to take more risks,
57:38but where that is balanced,
57:40nobody really knows,
57:41so that's hopefully the part of
57:43this study that we are doing and.
57:45Will let you know how that goes.
57:47It'll be interesting to see the
57:48results on your on your question.
57:50For me. Donation versus theft coercion.
57:55In default, UM,
57:56changing from opt in to opt out.
58:00It doesn't take peoples choice away,
58:03So what this gets into is the
58:05whole ethics or the nudging.
58:07Uh Richard Thaler won the Nobel
58:10Prize in economics for his book that
58:13he wrote and work that he'd done
58:15with Cass Sunstein and on nudges.
58:17And when they wrote about it,
58:19they called it libertarian paternalism.
58:23That is to say, uh.
58:26You're not taking anybody's choice away,
58:28but it turns out.
58:30Uh, if your employer says you're going
58:32to put more money into your retirement
58:35fund unless you check this box.
58:37Or if it says check this box if you want
58:39us to put more money in your retirement fund.
58:41The opt out leads to more money in
58:43your retirement fund doesn't take
58:44away your choice.
58:45You can check the bug.
58:47If you put desserts on the
58:48cafeteria line before the salads,
58:50when people take desserts,
58:51you put the salads first.
58:52More people take salads.
58:54Choices are still there,
58:56so that's the libertarian part.
58:58The paternalism is what people have
59:01called with choice architecture.
59:02You structure the choice in a way
59:06that predictably leads to people too.
59:09Be nudged in One Direction or another.
59:11So with the opt out no,
59:14the op yeah opt out versus opt in in
59:17Spain and Croatia you can still opt out.
59:20You just have to actively check
59:23the box top that so I I think
59:26that tries to thread the needle.
59:29Between. And keeping it a donation.
59:33Keeping a path.
59:34It's also very hard to tell from the
59:37published studies from Spain and Croatia.
59:39What happens if somebody has not checked
59:42the opt out box and the family says.
59:45We don't want them to be a donor.
59:48It seems from some anecdotal
59:50stuff I've heard that people
59:53still let the family veto that,
59:55as I think we do in the United States.
59:58If somebody checks the opt in box.
59:59Yeah, no, you're right in Europe
01:00:02and in the UK, where they have
01:00:04recently implemented in last year.
01:00:06If the family or the any other
01:00:08relatives were to say no.
01:00:10Oh obviously that goes out the door
01:00:12then then then that is upheld.
01:00:15So so in that sense too,
01:00:17it's more of a nudge.
01:00:20Uhm? Taking away choice.
01:00:23Alright, thank you Doctor Botcher
01:00:26for for those comments and
01:00:28please feel free to make others.
01:00:30Let me direct a question
01:00:32to to John and Martha.
01:00:36What opportunities for bias are there
01:00:39in terms of unrelated donors choosing a
01:00:43person to donate to is a white middle
01:00:46class woman with renal failure more
01:00:48likely to find an unrelated donor.
01:00:53John, you wanna think that?
01:00:55Yes, the answer is yes.
01:00:58So in the way we distribute categoric organs,
01:01:03we don't speak to the
01:01:05desirability of the recipient.
01:01:07The attractiveness of the recipient,
01:01:09how compelling their story is.
01:01:11We give the kidney to the
01:01:12person in greatest need,
01:01:13or the person who's likely to
01:01:15live longest from the donation.
01:01:16This world of living organ donation
01:01:19gives a lot of extra points to
01:01:21people who look like Deb, right?
01:01:23Good looking blonde Jewish mothers
01:01:25of two who doesn't love that?
01:01:28Who doesn't love that story and
01:01:30John and I have talked many times
01:01:33about the underlying question.
01:01:35Would once I met Deb what I've
01:01:37donated if I hadn't liked her?
01:01:40If she had been homophobic,
01:01:42I have a gay daughter.
01:01:43Uhm, if she had been a racist,
01:01:45I work in the black community.
01:01:49I didn't have to worry that she
01:01:50was going to be anti Semitic.
01:01:51I met her through a Jewish newspaper
01:01:54and would I have donated to a
01:01:58black Muslim 22 year old man.
01:02:00I don't know.
01:02:01Our paths probably never would
01:02:04have crossed but yes I yes,
01:02:06I think there's significant bias.
01:02:08I think if you've already
01:02:09lost four or five teeth,
01:02:10it's going to be really hard
01:02:11for somebody to get excited
01:02:12about donating a kidney to you,
01:02:14John,
01:02:14what's your sense about that?
01:02:18Absolutely. I mean it's not
01:02:19like you didn't know there were
01:02:22opportunities to donate before,
01:02:23but when you read about Devin,
01:02:25the Jewish Chronicle.
01:02:28She reminded you of your cousin and.
01:02:31That's what tipped you over the edge so.
01:02:34Uh. I think that query clearly is at work.
01:02:39It's interesting that with categoric
01:02:41donors in the whole universe application
01:02:43system we treat Catterick donors,
01:02:46kind of Eric organs as communal property.
01:02:51In theory, legally, if I wanted to be
01:02:54a categoric donor I could specify.
01:02:57I only wanted to go to a child.
01:02:59I only want this to go to a white person and,
01:03:03uh, but people don't.
01:03:05Uh, and the system doesn't,
01:03:09but with directed donation.
01:03:11They clearly do with the crowd sourcing too.
01:03:15There's lots of concerns about
01:03:17inequities and disparities in that too.
01:03:20People who have access to the
01:03:23technology and nowadays there are
01:03:25consulting firms that will help you
01:03:27structure your crowdsourcing campaign
01:03:29and studies about what sort of
01:03:32visuals are the most effective and.
01:03:34You know people who,
01:03:35if you have the money,
01:03:36will help you develop a more successful
01:03:39campaign so.
01:03:40Yeah,
01:03:40there's a lot of concerns
01:03:42related to this question about
01:03:44the disparities and inequities
01:03:46in directed living donation.
01:03:49So if we have time I I think it would
01:03:51be worth returning to that issue too.
01:03:53You know, are there ways we
01:03:55can reconcile the inevitable?
01:03:59Susceptibility to inequities and and deal
01:04:02with it in in the directed organ systems.
01:04:05Unrelated to organ donor system.
01:04:07So let me ask, let me pose another
01:04:10question here from from the audience.
01:04:13Any reflections on experience of
01:04:16independent living donor advocate
01:04:19in the living donor process thing,
01:04:23opportunities for ILD,
01:04:24a independent living donor advocate
01:04:26that might have made the experience
01:04:29different or better for you.
01:04:33Yes, I think so.
01:04:33So I did have a donor advocate,
01:04:35but she was a social worker
01:04:37connected to the clinic,
01:04:39which meant that she was always watching
01:04:41to be sure that I wasn't going unstable
01:04:43or that I wasn't at risk for suicide.
01:04:46She was a big help with a couple of
01:04:48things after our surgery was called off,
01:04:50we were up in Rochester during
01:04:52the Jewish high holidays,
01:04:53she found a synagogue for my
01:04:55husband and me to go to services.
01:04:56Since I wasn't going to have surgery,
01:04:58I thought I should probably go to the
01:05:00synagogue, so she was helpful, but.
01:05:03She belonged to the system
01:05:05that was giving me trouble.
01:05:07I think the program is really smart,
01:05:10and in fact I'm signed up to to
01:05:12be certified because other because
01:05:14living donors like me who can help
01:05:16other people through the system.
01:05:18But the keyword is the I independent.
01:05:20They're not part of the clinic,
01:05:22so that if you want you want to
01:05:24***** about the clinic or you
01:05:25want help navigating the clinic,
01:05:27they don't have a vested interest.
01:05:28They're not paid by that clinic.
01:05:30So yeah, I'm a big supporter of that.
01:05:32I lda program.
01:05:32I think it can make a big difference.
01:05:35Great, thank you.
01:05:37Here's a here's a question from Lori
01:05:41Bruce who is associate director of the
01:05:45Interdisciplinary Bioethics Center.
01:05:47She says China continues to engage in
01:05:50selling organs of political prisoners,
01:05:52knowingly ending deaths,
01:05:55and even deaths of many thousands
01:05:58of Uighurs and other ethnic
01:06:00and religious minorities.
01:06:01Is Doctor Lantos aware of any recent US
01:06:05recipients of illegal Chinese organs?
01:06:09Actually.
01:06:11I am not.
01:06:14You know if anybody would be
01:06:16aware be the transplant programs,
01:06:19but if they were aware,
01:06:21it would mean that they were.
01:06:23Involved, and they probably wouldn't
01:06:25want to talk about it. Yeah,
01:06:28you're right, uh, none.
01:06:32OK, well that's that's reassuring.
01:06:37Here is. Here's a comment from
01:06:40an old friend as a living,
01:06:41altruistic kidney donor and knowing
01:06:43the procedure is really quite easy.
01:06:46How can we get that information
01:06:48out to the masses so that they and
01:06:51others can take the plunge into the
01:06:53superhero rule of being a living donor?
01:06:58What do you think? Well,
01:07:01we wrote a book, Good story
01:07:04and and in fact.
01:07:07I've had the opportunity to write
01:07:08and speak less about the clinical
01:07:10side that we're talking about today,
01:07:12but but more about the altruistic side.
01:07:14The meaningful side, the spiritual side.
01:07:16It just had an article in Hadassah
01:07:18Magazine which goes up to 250,000
01:07:20people in the United States about
01:07:22how meaningful the experience was.
01:07:24I didn't talk about dry ice,
01:07:26but the real truth is I don't think
01:07:28the problem is telling people about it.
01:07:31There are people who want to do this.
01:07:33What we need to do is make
01:07:35it easy for them to do it.
01:07:37It's one thing that put
01:07:38more people into the funnel,
01:07:40but the funnel mirrors too quickly,
01:07:43and particularly given that most
01:07:44people who need candies or black
01:07:46or brown and that their relatives
01:07:48and their friends are more likely
01:07:50to come from the black and brown
01:07:51communities we need to make it easier
01:07:54for people who already want to do it.
01:07:57So yeah,
01:07:57I think I think wiping the funnel
01:07:59at the top is good and smart
01:08:01and helpful and useful.
01:08:02And we did write a book to kind of do that,
01:08:04but we have to keep that
01:08:06funnel from narrowing so fast.
01:08:09With regard to the to the barriers
01:08:12that you encountered, and I know
01:08:15that you have brought some of those,
01:08:16some of those problems to the
01:08:18to the clinic to Mayo Clinic.
01:08:21Have you, or are you aware of changes?
01:08:24Have they improved to your to your knowledge?
01:08:30I know, I know, if two things that are better
01:08:32now and none of them are because of us,
01:08:34so they have changed their
01:08:36their position on cannabis.
01:08:37And in fact now they only require
01:08:39that you abstain from cannabis two
01:08:41to three weeks before the procedure.
01:08:43And I just know this 'cause I have a couple
01:08:45of other friends are being screened there.
01:08:46My hunch is that the change there
01:08:48has come about because cannabis is
01:08:50legal now in 23 States and if you
01:08:52keep screening people out for that,
01:08:54you're going to be pretty soon
01:08:56screening out your population.
01:08:57The other big change has
01:08:59come about because of COVID.
01:09:00And that's Tele health.
01:09:02When I did this in 2018,
01:09:04insurance companies were not yet
01:09:06reimbursing for telehealth appointments,
01:09:08and so I couldn't have my
01:09:10psychological screen online.
01:09:11I couldn't have my financial
01:09:13appointment online.
01:09:13I couldn't meet the social worker online,
01:09:16the Mayo Clinic,
01:09:17and I assume you folks and many other
01:09:19people are now doing that online,
01:09:22which is much more convenient.
01:09:24Much easier for the donor,
01:09:25and we have code to thank for that.
01:09:28OK relax, you can you tell us about
01:09:31what's happening at you, yeah?
01:09:32So besides the financial peace and
01:09:34I don't think that's a big one.
01:09:36It's the bigger one.
01:09:38Is a licensing part.
01:09:40And we recently where we couldn't either
01:09:44see somebody out of state on daily health,
01:09:46but I think if I'm correct in saying I
01:09:48think we can now see patients in Rhode
01:09:51Island or our psychologists can see
01:09:53patients and Rhode Island through telehealth.
01:09:56But I don't think we can see
01:09:59further states like New Hampshire,
01:10:02Maine or even further away because
01:10:05of the licensing constraints.
01:10:07So there are many hurdles that come,
01:10:09but you're right.
01:10:10COVID has definitely showed us a
01:10:12way forward where we can really
01:10:14look inwards and try to see
01:10:16if we can improve things.
01:10:18OK, thank you. Here's here's a.
01:10:25Hold on just a second.
01:10:29Thanks to the speakers for
01:10:30sharing your story into Dr.
01:10:32Batra for explaining the viewpoints
01:10:34of the transplant centers as the
01:10:36immediate past president of you knows,
01:10:38I can say that now the national
01:10:41living Donor Assistance Fund will
01:10:43also support at a higher financial
01:10:45threshold and for lost wages,
01:10:47travel, lodging and even child
01:10:49care and dependent care.
01:10:51And this is from David Mulligan,
01:10:54so that's good.
01:10:55That's good to hear absolutely.
01:11:00Is there still a financial threshold
01:11:02David, or is it? Just submit your
01:11:05receipts and get reimbursed.
01:11:09Alright, can we unmute him? I don't know.
01:11:10Yeah, he will have to.
01:11:13We'll have to see if he responds.
01:11:16Hang on just a second.
01:11:21Ah, there we go. Can you hear me?
01:11:24Yeah, great thank you so much for unmuting
01:11:28me and allow me
01:11:29to participate in such an
01:11:31excellent discussion. This is very
01:11:33stimulating and and very timely.
01:11:35Thank you all for for
01:11:37everything you do. And yes, the
01:11:40the financial threshold is
01:11:42still set, but it's moved
01:11:43from about the 25th percentile
01:11:45to the 75th percentile,
01:11:47so a significant increase in.
01:11:50Accessibility for funding
01:11:52for all living donors
01:11:54and and as Martha had mentioned,
01:11:56you know, Optum health has had
01:11:59created as a payer the best
01:12:02support system for all their
01:12:04covered lives and and they are the
01:12:06largest coverage providers for the
01:12:09insured patients for transplant.
01:12:11So all of the donors for their covered
01:12:14patients will have all this support.
01:12:16Sadly, Despite that very few.
01:12:20Only 8% had actually
01:12:22utilized it, so we do need to educate more.
01:12:25We need to get more messaging out,
01:12:28but as far as the federal
01:12:30support from the NASDAQ goes,
01:12:33the threshold for support
01:12:36has moved up significantly,
01:12:39much higher so so that almost
01:12:41all donors that have been done
01:12:44to date that we
01:12:45have financial data on would
01:12:49have access to some some
01:12:51level of support. For their
01:12:53needs and it would include dependent care,
01:12:56childcare, travel, housing and
01:12:58the opportunity for even lost
01:13:01wages. So that's so that
01:13:03was new and much heard need.
01:13:09OK, thank you very much.
01:13:13So now I seem to have I may
01:13:16have lost a couple of comments
01:13:19here and I apologize if I did.
01:13:22Let's just see where we can go next.
01:13:28So here's here's a comment.
01:13:33One of our commentators who I I have
01:13:35to track, down her previous comments,
01:13:37said that she's a living living donor.
01:13:42She says that I I wanted,
01:13:46I wanted to say that my kidney lasted
01:13:4916 years due to the hand of God.
01:13:51So thank you very much for that. Uhm?
01:13:57OK.
01:14:01OK, thank you for two great presentations
01:14:03on behalf of a professional group
01:14:05of close to 200 psychiatrists and
01:14:08psychologists who work with organ
01:14:10recipients and donors within the Academy
01:14:12of Consultation Liaison Psychiatry,
01:14:14I want to reassure the panelists that
01:14:16there is a lot of effort happening from our
01:14:19community to assist our donor candidates.
01:14:22There are several aspects of
01:14:24mental illness and donation that
01:14:26were left out tonight and no,
01:14:27we cannot evaluate patients across.
01:14:30State license state lines without a license,
01:14:33so that's helpful.
01:14:34Thank you very much.
01:14:38Now I have a question and
01:14:40again I will try to locate.
01:14:43One of the last one of these.
01:14:48Right, well, hang on chest this second.
01:14:51Still looking. All right, well here's
01:14:55here's a question that I have John you.
01:14:59You talked about the the possibility
01:15:03of markets and you know what might
01:15:07be desirable and you know giving
01:15:11giving credit to the objections but.
01:15:16Do you see it?
01:15:17Are there ways that we could make what?
01:15:21What sort of constraints would we have
01:15:24to apply to market to a market system
01:15:28for organs in order to make them?
01:15:32Equitable or two to avoid any pilot there.
01:15:35Possibility of abuse is that
01:15:38could arise from a market.
01:15:40We certainly we certainly see
01:15:42abuse is in many other markets,
01:15:45but markets don't have to be totally free.
01:15:48So what?
01:15:49What sort of constraints?
01:15:51What sort of arrangements do you
01:15:52think would have to be made?
01:15:54To make some
01:15:55work so we have some really interesting
01:15:58discussions with with our off about this
01:16:01because he's been thinking about this and
01:16:03working on it much longer than we have.
01:16:06And he's a Nobel Prize winning
01:16:08economist and had some pretty elaborate
01:16:11proposals for what they have,
01:16:13what he calls a well regulated
01:16:14market would look like.
01:16:16First of all, there would be a
01:16:17set price set by the government.
01:16:21Of course, set reimbursement for the donor.
01:16:29Let's say 10,000 let's say 15,000,
01:16:32so there would not be a
01:16:33free market in kidneys.
01:16:34They wouldn't be sold to the
01:16:36highest bidder, so that would.
01:16:39And the money would come from the
01:16:41government or the insurance company
01:16:43so it wouldn't allow the richest
01:16:46people to outbid poor people in terms
01:16:49of getting access to the kidney.
01:16:51But would it be coercive?
01:16:54Well, they are. The question is,
01:16:56uh, from whose perspective and?
01:17:00Again, what what Roth proposes in it?
01:17:04Grudgingly coming around to I was.
01:17:07I was much more anti market
01:17:09before engaging in this process.
01:17:12Here's a pilot project to study,
01:17:14so imagine. Pick a state.
01:17:17California Washington A Texas a doing
01:17:20a pilot project of reimbursing donors
01:17:24and give it three years and do it with
01:17:28this set price and use the same sort
01:17:30of evaluation of donors that we used
01:17:33for altruistic donors today and then.
01:17:38Get someone like a psychologist who wrote
01:17:43in and talked about how they evaluate.
01:17:46Donors today prior to donation to do careful
01:17:50follow-up studies and see what people say,
01:17:53do they have decisional regret or
01:17:54they depressed after they don't move
01:17:56so they wish they made a different
01:17:59decision and and get some data?
01:18:02People who are pro markets say,
01:18:05you know this is like anything else,
01:18:08somewhat dangerous that people do for
01:18:10money and we should trust people to
01:18:12evaluate their own tradeoffs between.
01:18:16Taking risks and earning money for their
01:18:20family and see if you thought works.
01:18:24I mean it would at least move the
01:18:27debate to one that had some evidence.
01:18:30Right now most of the data markets
01:18:33comes from places where the
01:18:35markets are not well regulated.
01:18:37China and Iran for example,
01:18:39where exploitations rampant thing.
01:18:43Dumb coercion and lack of
01:18:46voluntariness clearly occurs,
01:18:48and outcomes for donors seem to be terrible.
01:18:53But that doesn't seem to be the appropriate.
01:18:57Benchmark.
01:18:59OK.
01:19:01Follow on that Jack and I wanted
01:19:03to ask John that perspective,
01:19:04'cause we've kind of been discussing that
01:19:07in our transplant surgeons groups a lot.
01:19:10We worry that this commoditization
01:19:12that we talk about could lead
01:19:14to exploitation of people in
01:19:16the lower socioeconomic groups,
01:19:17and sometimes even encourage living
01:19:20donors out of economic desperation
01:19:23to falsify their medical history.
01:19:26If that were to happen,
01:19:27then you have a huge potential of
01:19:29poor outcomes for both the donor.
01:19:31And the recipient.
01:19:33And that could really take this.
01:19:37Into a snowball effect and spiral
01:19:39down in a very poor way.
01:19:40Now I do agree that if people are getting
01:19:43paid to do spawn donation and hair donation.
01:19:48But there should be some way
01:19:50that we should come up with a how
01:19:53this should be supported or they
01:19:55should be financial incentives.
01:19:57But I think the issue is the
01:20:00financial incentivization kind
01:20:01of has this crude tone to it,
01:20:05which is where we try to work around
01:20:07this and dilly dally and soft on it.
01:20:10Or really cut that that sharp edge of it
01:20:13by calling it financial disincentives.
01:20:16And I I think which is why?
01:20:20These things take much longer
01:20:22time than they do,
01:20:23but I also have the same concerns
01:20:26that this commoditization effect
01:20:28could really snowball into something
01:20:32that that would affect the disease
01:20:36donation or rates as well.
01:20:39And I really don't know what
01:20:41that would look like.
01:20:43Did you had any perspectives
01:20:44from your ethical groups?
01:20:46When you discuss this, so again.
01:20:50Pilot study may be able to get some data.
01:20:52I mean, people have raised three
01:20:54concerns or more than that,
01:20:57but one is the one you talked about.
01:20:58People would lie on their forms because
01:21:00they're desperate for the money and it
01:21:03would lead to lower quality kidneys worse
01:21:06outcomes which would give transplant.
01:21:08Yeah, I mean it would be bad for the
01:21:10people involved, but would also be
01:21:12bad for the transplant enterprise.
01:21:14Overall it wasn't as successful.
01:21:17People talked about crowd out when you're.
01:21:21Uhm, that nobody is going to donate anymore,
01:21:25but the same people who might have donated.
01:21:28Now we get money for donating,
01:21:31so we'll just raise the price,
01:21:32but not really increase the supply. Uh.
01:21:40Third it'll come through.
01:21:45What about the the possibility that?
01:21:50The family of a of a deceased deceased
01:21:53cat Avaric donor is going to want to be
01:21:56reimbursed for their loved ones organs. Why
01:22:01not one of the things we we have
01:22:03heard a lot of discussion about, UM?
01:22:06It is an interesting question.
01:22:09Should we pay for the funerals of
01:22:11people whose organs are offered
01:22:13up for transplantation and I I am
01:22:16not as worried about coercing dead
01:22:18people to give up their organs
01:22:20as I am coercing living people,
01:22:22the the potential negative health
01:22:24health outcomes to dead people is 0.
01:22:29There are cultural issues there.
01:22:30Issues of mourning there, issues of grief,
01:22:32but the dead person is dead and there's
01:22:36been a lot of conversation about.
01:22:38There are people who cannot afford
01:22:40a funeral for their loved ones.
01:22:43Is this one way to make a difference there?
01:22:45And I I think it's very compelling.
01:22:48No, I I didn't think we we would be
01:22:51doing a lot of harm to the dead person.
01:22:53I was just wondering if the the natural
01:22:56incentives on the family would be to say,
01:22:58well look you know my late
01:23:00father is given the kidney.
01:23:02Why can't the family get a
01:23:04little something for this?
01:23:06And I don't know I I don't know that
01:23:08that would be an unreasonable request.
01:23:10I like the I personally like the
01:23:12idea of paying for the funeral.
01:23:14I think that's that's quite
01:23:16that has been.
01:23:17So that has been done in Chicago.
01:23:18There was a in gift of hope, a OPO.
01:23:21They used to reimburse that,
01:23:23but I think that program fell apart as well.
01:23:28But they were.
01:23:29They were doing that quite a lot,
01:23:31but then obviously because
01:23:32it's not a national thing.
01:23:34One OPO was doing it and obviously
01:23:37probably they had a complaint of some
01:23:39sort and it kind of had to be stopped.
01:23:40So unless there is a collective effort
01:23:43where then people don't feel that they
01:23:46are the kind of the zebra and doing it
01:23:49on their own whim or their own ways.
01:23:51I think then only it kind of works.
01:23:54But yeah,
01:23:54that is something that has been
01:23:57done and being discussed as well.
01:23:59It's a great idea.
01:24:01Right, thank you.
01:24:04Just a follow on to the previous question.
01:24:07The previous note about the.
01:24:11The unethical removal of organs
01:24:13in China and other countries.
01:24:15Is there anything that is being done
01:24:18or is there anything that can be done
01:24:20to try to affect those sorts of abuses?
01:24:27And I said, I don't know that that's
01:24:29a fair question and I. But what
01:24:32I'm going to throw out is that there
01:24:34are human rights abuses in many,
01:24:35many countries, in many,
01:24:37many horrific ways, and the truth is,
01:24:39John and I really only studied the
01:24:41United States, but it's it's horrific.
01:24:43But I could give you 20 other list of other
01:24:46horrible things that we do to people,
01:24:49depriving them of their health and
01:24:50their livelihood, and their property.
01:24:52Absolutely. OK
01:24:55do U S president meeting with
01:24:56Chinese president these days?
01:24:57Maybe he he can get an email from us.
01:25:00Yeah, I don't. I don't know that this topic.
01:25:04Yeah, the transplant community has
01:25:06spoken out against its but now. I'm
01:25:09not sure that there's much
01:25:11else to that we can do that.
01:25:14And then let me read from Doctor Batra.
01:25:17He's from your organization.
01:25:19Thank you for the donation
01:25:20and the work of the panel.
01:25:22I have the privilege of working with
01:25:24Doctor Batra on the living donor team,
01:25:26and it's helpful to hear your
01:25:28perspectives as we are constantly
01:25:30working to refine our process here
01:25:32at Yale and to reduce barriers
01:25:34and recently spent time working
01:25:35to define a adjust process for
01:25:39allocation of non directed graphs.
01:25:42We have established a clear algorithm.
01:25:45That we use to educate non directed donors
01:25:49on up front to aim to reduce disparity.
01:25:54Your perspective is appreciated.
01:25:58It sounds great. I mean,
01:26:01I think people have found in
01:26:03trying to develop the universe
01:26:05algorithms for kind of Eric
01:26:07donors that the goal is good.
01:26:09But the Devils in the details.
01:26:14In particular, and I'm sure
01:26:17you struggled with this as you
01:26:19were working on your algorithm,
01:26:20and if the goal is to get the best outcome,
01:26:22you tend to take the healthiest recipients.
01:26:25The goal is to save the most lives.
01:26:27You take the sickest recipients,
01:26:29but how sick would you have to be
01:26:31before your too sick and you're not
01:26:33going to do well and black people
01:26:35tend to be sicker than white people
01:26:37there with more burden of chronic
01:26:39disease and so balancing those two,
01:26:41I'd love to see your algorithm
01:26:43and see how you addressed it.
01:26:45Hope you're going public.
01:26:48Alright. Uhm? From a colleague,
01:26:52I think the journals have refused to
01:26:55publish any works that include data
01:26:57from Chinese living donations from
01:26:59prisoners, that's. That's a good
01:27:02idea. That's a sanction no no.
01:27:07Let's see, we have in the wild.
01:27:09Let me let me read one more comment,
01:27:11and I apologize if if
01:27:12people have been left out,
01:27:14I'd like to note a pilot project called
01:27:16the Living Donor Collective that is
01:27:18collecting long term follow up data
01:27:20in living donors currently including
01:27:22kidney and liver transplant programs and
01:27:24now expanding beyond a pilot to engage
01:27:27with a broader number of programs.
01:27:30This will be helpful for us to
01:27:32obtain more granular data on
01:27:34donor outcomes that can guide.
01:27:36Adjustment in thresholds of acceptance and
01:27:40risk assessment mitigation going forward.
01:27:43So. Or useful commentary,
01:27:45and I would like to as we are out of time.
01:27:50I would very much like to thank Dr.
01:27:52Lantos Bostic Gershon and Romesh
01:27:55Batra for I I really stimulating
01:27:59presentation and discussion.
01:28:00I really I think this has been A
01:28:04and I'd like to thank our audience
01:28:06for also participating.
01:28:08I think this has been a terrific
01:28:10session and thank you all for.
01:28:14Or joining us for gracing us
01:28:16with your presence.
01:28:17This has been a well done and
01:28:20remarkable thank you very much.
01:28:22And thank you David Mulligan as well.
01:28:24And all our commentators.
01:28:27Thanks for having us.
01:28:28Thank you all so much.
01:28:29Yeah, thank you everybody.
01:28:32Taking to you excellent job here.