Some Ethical and Policy Issues in Living Kidney Donation

Transcript

• 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.