May 7, 2024 • 30 mins
Imagine stepping into a world where giving the gift of life is made more accessible to all. That's the transformative journey we embark on with Ruby Rorty and Rachel Watson in the latest episode of Donor Diaries, as they share the details of a program called Project Donor. Ruby, from Stephen Levitt’s Center for RISC, shares the program's genesis and its profound impact on the healthcare sector's donor eligibility dilemma. With a focus on mutable health issues, this initiative paves the way for potential donors like Rachel, who recounts her heartening story of becoming a non-directed kidney donor and how Project Donor's comprehensive resources made her life-saving contribution possible.
Transitioning from eligibility to empowerment, our conversation reveals the personal touches that set Project Donor apart. Rachel's recount of the caring gestures she received—cards to edible arrangements—post-donation, underscores the program's commitment to holistic donor care. Echoing the significance of this support are the voices of case managers, the unsung heroes from the University of Chicago's Crown School of Social Work, who ensure a seamless experience for participants. As we celebrate both the program's success and the candid, inspiring advice shared by our guests, we're reminded of the deep connections forged through shared stories of hope, health, and humanity.
Relevant Links and Resources
Radical Innovation for Social Change (RISC)
Project Donor
Project Donor Report on American Living Kidney Donation
Challenges and Opportunities Report Summary
Crown School of Social Work
Update on Victoria, first Project Donor Success Story
Twitter Community Notes
People I Mostly Admire Podcast
Anti-obesity pharmacotherapy to facilitate living kidney donation
Obesity Statistics
Multiple Reasons for Living Donor Denial: A Single Center Experience
Outcomes of Living Kidney Donor Candidate Evaluations in the Living Donor Collective Pilot Registry
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Welcome back to Donor Diaries.
I'm your host.
Lori Lee Ever pondered theannual count of individuals who
donate a kidney each year?
It hovers around 6,000, yet,despite advancements in
technology and thesimplification of surgery over
the past quarter century, thisfigure remains relatively
stagnant.
Though precise figures elude ushere, it seems that less than
(00:23):
10% of those expressing initialinterest in donation actually
proceed to surgery.
During the first step ofevaluation, which is an
extensive health survey,somewhere around 20% of
prospective donors aredisqualified.
These numbers vary from centerto center.
Additional drop-offs occur dueto wavering commitment,
(00:43):
recipients finding alternatedonors or unfortunate
circumstances like when theintended recipient passes away.
The paramount concern ElevatedBMI.
Most transplant centers set aBMI threshold of 35 or below for
donor eligibility.
Currently, over 30% ofAmericans are overweight and
more than 42% are obese, sonaturally we can expect these
(01:07):
prospective donors to be ruledout.
But what if these individualsteeter on the brink of a healthy
BMI?
What if minor lifestyleadjustments could render them
eligible to donate?
Wouldn't it be remarkable if wecould aid these prospective
donors in qualifying?
Today we're joined by guests whodelve into this matter Ruby
(01:28):
Rorty, an analyst at StephenLevitt Center for Risk,
spearhead's project donor, arisk-incubated nonprofit
dedicated to assisting liver andkidney donor candidates in
attaining transplant eligibility.
Alongside Ruby, we have RachelWatson, a non-directed kidney
donor whose journey benefitedfrom this remarkable program.
(01:48):
Welcome, ruby and Rachel.
Thanks.
Thank you so much for having us.
Ruby, let me start with you.
Can you tell us what RISC is?
Speaker 2 (01:58):
The Center for RISC, which stands for Radical
Innovation for Social Change, isa think tank and nonprofit
incubator at the University ofChicago.
We were founded by Freakonomicsco-author, steve Levitt, and at
RISC we seek unconventionalsolutions to big problems.
We work on a wide range ofissues.
A few that come to mind areadverse placements among foster
(02:22):
youth, green infrastructure,evidence-based curricular
initiatives and organ donation.
Speaker 1 (02:28):
Can you give us an example of a risk initiative
that summarizes what you mean bybig problems with elegant
solutions?
Speaker 2 (02:36):
Gosh, so we were working with Twitter and talking
about partisanship and thequality of online discussion,
and the result of thatcollaboration is what became
Twitter Community Notes.
And so that was a situationwhere risk analysts had this
(02:57):
idea that where tweets withoutsort of audience feedback could
spiral into misinformation andreally contentious debate, there
was this idea of crowdsourcing,fact fact checks and just
relying on the Twitter communityto be able to have a meta
conversation.
Community notes were somethingthat I think made that platform
workable and that distinguish itfrom other platforms like
Instagram and Facebook.
Speaker 1 (03:18):
It's exciting work.
So what is Project Donor?
Speaker 2 (03:21):
Project Donor was born when a former risk analyst
who was interviewing medicalprofessionals to identify gaps
in medical access learned thatmany people who are eager to
give the life-saving gift of akidney or liver to a loved one
or a stranger are turned away atthe door for mutable health
reasons like BMI or, at somecenters, cigarette use.
(03:42):
Oftentimes these donorcandidates are not informed that
they could become eligibledonor candidates with lifestyle
changes, and so this insightbecame Project Donor, and we are
devoted to helping living organdonor candidates achieve
eligibility and their healthgoals in advance of donation and
to maintain their health in thelong run.
(04:03):
A bunch of our team comes froman economics background.
I studied economics, so one wayto think about it from an
economic perspective is that youhave this sort of human supply
chain in healthcare of donorsand of organs from living donors
.
At this moment, you have abunch of people who are almost
making the eligibility cut andthey are really excited.
(04:26):
I mean, often their wellbeingis hugely tied to whether
they're able to be a donor,because the most important
person in their life will diewithout an organ and is not
likely to receive one, you know,from off the waiting list or
from a deceased donor, and sothese people are falling just
short, and often the intuitionamong nonprofits and experts in
(04:46):
transplant is to go and try torecruit more living donors,
which is a practice that Itotally endorse.
I think more people should beliving donors, but we have this
idea instead of working with thepeople who are just short of
eligibility, but who would besafe, healthy candidates with
just a little extra support.
Speaker 1 (05:04):
So you're looking at your supply chain and you're
saying isn't it easier to justhelp this person become eligible
versus go out and find a newperson who is eligible?
Speaker 2 (05:13):
Our research suggests , as you mentioned in the
introduction, that over 90% ofpeople who take the first step
toward organ donation neverultimately undergo surgery.
Data from the National KidneyRegistry, the NKR's screening
service, suggests that about athird of people who are ruled
out by the NKR in that initialstage are excluded due to BMI,
(05:35):
and at some centers, nicotineusers are also excluded, which
adds to the number of peoplebeing rejected for mutable
health concerns.
And so, from where we'restanding, this amounts to
potentially thousands of peoplewho are eager candidates for
living donation, who couldsafely qualify, but who aren't
given the tools necessary toachieve eligibility.
Speaker 1 (05:54):
Wow, that's really important.
So what specifically doesProject Donor offer to potential
donors?
Speaker 2 (06:01):
So we partner with a number of corporate providers
who allow us to offer weightloss, smoking cessation and
emotional support resources toour donors free of charge.
The program that people pursueis up to them and customizable
depending on what mutable healthissue has been flagged by their
transplant teams.
Folks who are in our weightloss program receive a free
(06:23):
electronic scale delivered totheir door and can choose
between three commercial weightloss systems new nutrition,
on-point nutrition and WWformerly Weight Watchers.
Those who are in our smokingcessation program receive
nicotine products, gum patches,lozenges delivered to their door
, and our participants also,regardless of whether they're in
(06:44):
the smoking or weight lossprogram or both, also have
access to free talk therapy viaBetterHelp Online Therapy.
In addition to these materialhealth resources, every Project
Donor participant is assigned acase manager who's kind of like
a coach and a cheerleader, andtheir case manager checks in
with them, texting and callingthem, helping them problem solve
(07:05):
when obstacles arise, andcelebrates every step of the
donation journey with them.
Speaker 1 (07:09):
What a great partner that would be for somebody.
Rachel, you know firsthand whatit's like to work with Project
Owner.
Can you tell us which programyou took advantage of and why?
Speaker 3 (07:21):
I took advantage of the Noom program which, prior to
being connected with ProjectOwner, I had never heard of Noom
before.
So when those three optionswere given to me, the only one
that I'd heard of was WeightWatchers, or WW, as you said,
ruby, and that was somethingthat I had heard of Weight
Watchers growing up, and it justseemed like Noom was a little
(07:45):
bit more modern.
It definitely met thatmillennial minimalist vibe, so I
was more drawn to that.
I really liked the layout of itand it worked really well for
me.
Speaker 1 (08:00):
Can you tell us a little bit about what happened
when you initially steppedforward to donate?
Speaker 3 (08:04):
I first found out kind of about the need for
kidney donation right after Igraduated college and I'd read a
newspaper article about theprocess and it was highlighting
someone who was looking for akidney and who actually received
one from a member in thecommunity.
And you know, I'm fortunateenough to have been pretty
(08:26):
ignorant to what that wholeprocess is like.
I didn't know anyone who hadkidney disease or had to get
transplanted in Oregon.
So reading about it, it reallywas pretty shocking to me the
number of people that werewaiting and what that process is
like for them.
I live in Chicago and I amlucky enough to have a lot of
(08:46):
different options when coming to, you know, looking at
healthcare providers and reallyfantastic systems in the area.
So the first one I reached outto actually, you know, I had the
initial pre-screening phonecall and we got to a question
about BMI and after we answeredthat, like it was it was done,
(09:08):
the conversation was over.
They were like you know, youdon't qualify.
There was no discussion about apath forward, it was just end
of the phone call, that's it.
And so I ended up after thatreaching out to another
transplant center, loyola, andthey were the ones who actually,
after I passed all of the othertesting, came back and referred
(09:29):
me to Project Owner.
Speaker 1 (09:31):
What did it feel like to be turned away by that first
center it?
Speaker 3 (09:35):
sucked.
It did not feel good.
It is hard when the topic isweight and especially body image
.
Yeah, you know, for that to bethe one obstacle that's in the
way of donating seems especiallytricky because on paper they
(09:58):
came back and they saideverything looks great, but just
to make sure that you're in thehealthiest possible state, we
want you to lose 17 pounds,which that's something I totally
respect and I don't have anyissue with that.
I'm glad that I did it.
It's such a harder task thanjust lose 17 pounds, and it's
(10:18):
not about the work or theroutine change that goes along
with losing weight.
It's dealing with the emotionsthat go with really addressing
that and to have that be thething that is stopping trying to
help another person.
In a way, like I, view organdonation as the ultimate
empowerment of your own body.
(10:39):
Right, you're taking a healthypart of you and giving it to
someone else so that they can behealthier, and that's so
affirming.
I first became aware ofnegative feelings surrounded my
weight in my body when I was inthird grade.
And I was going through thisprocess when I was 26.
So that's 18 years of it beingthe dark cloud, the elephant in
(11:04):
the room, and to have this thingthat you've been thinking about
for 18 years be the thingthat's in the way of donation
was just a lot to kind ofemotionally grapple with at
first.
Speaker 1 (11:16):
I was also told I had to lose a little bit of weight
before I donated and, like yousaid, it's something that I was
already ultra aware of.
It was something I knew that,even if I wasn't going to donate
my kidney would be healthy forme to do, but I certainly would
have been super frustrated if itstood in my way.
Imagine what that would feellike the pressure to lose 20
pounds quickly so that you cansave somebody who loves life now
(11:39):
.
Speaker 3 (11:40):
I remember the days where it's like you know, you
weigh yourself every day and yougain an ounce and you feel like
, oh my God, am I ever going tobe able to do this thing?
I'm letting everyone down, I'mwithholding this gift to someone
else.
It's so frustrating and it's soeasy to feel defeated when
you're working with somethingthat has so much riding on it.
Speaker 1 (12:04):
Yeah, exactly.
So what was their team like to?
Speaker 3 (12:08):
work with Project donor.
They could not have been easierto work with, really.
So I got the recommendationfrom Megan Parker she's the
living donor coordinator over atLoyola and I think within 24
hours someone from project donorcalled me and I remember being
two months into working withthem and realizing that I had
(12:31):
never had a need to Google themor go to their website, which
I'm the type of person if I'mgoing out to eat, I'm Googling
the restaurant, I'm looking atthe menu, I'm looking at photos
of the interiors.
So the fact that I'd had aworking relationship with an
organization who had beensupporting me for months and
there was never a need to seekout any more information from
(12:52):
them because they were providingeverything that I needed, I
think that's really a testamentof how easy they were and how
positive of an experience it wasto work with them.
Speaker 1 (13:05):
So you said that you use Noom.
What other resources did theyhave available to you?
Speaker 3 (13:10):
I use Noom, and then I also had the team support
member who was checking in on me.
I think the early stages it wasNoah and then Tatiana, so yeah,
and they would just check inand it was a nice balance
between support without pressure.
The timeline of that processwas something that I was really
(13:30):
insecure about, especially givenmy first interaction with a
donation center being that ofdenial.
I really thought that if I tooktoo long, eventually Loyola or
Project Donor or someone wasgoing to come along and be like
you know what you're out, you'rejust flat out denied Good shot.
But it's over, yeah, and so Iwas really nervous about that,
(13:53):
but it wasn't something where Ifelt pressured by them.
It was supportive, it was notpressuring, which was something
I was really appreciative of.
And then I know they havecommunity meetings as well that
I think might have started rightafter I donated or around the
time that I was donating.
So I didn't attend any of those.
But I mean, even after donation, they've, they've kept up with
(14:17):
me and I actually I know Imentioned it on our call and I
also know that this is an audiomedium, so the listeners will
just have to trust me, but I didfind the card that they sent me
after I donated Ruby, your nameis signed to it, so thank you,
but they'll send me a card andan edible arrangement after I
donated and it's so sweet andobviously it meant enough that I
(14:38):
kept it.
So, yeah, they've just been solovely and supportive and I
really can't speak highly enoughabout my interactions with them
.
Speaker 1 (14:46):
Oh, did the edible arrangements include the
chocolate covered fruit or didthey?
Speaker 3 (14:51):
It did, and I ate those first.
Speaker 2 (15:00):
Rachel, I'm so happy you had a positive experience
with Project Donor.
We are so proud of all of ourdonors.
Speaker 1 (15:02):
We're really glad to hear it worked out, I know, and
she kept the card.
That's got to make you feelgood.
You really made a difference,ruby.
It does.
Speaker 2 (15:09):
I think people really appreciate the little extra
touch of something like a cardor an edible arrangement,
because so much of theexperience of donating in a
hospital is very clinical.
So it's just nice to have awhole team of people rooting for
you, whether it's across thecity or across the country.
Speaker 1 (15:26):
Ruby, can you tell us a little bit more about the
coaches that Rachel wasreferring to and what their
qualifications are?
Speaker 2 (15:34):
Yeah, so all of our case managers are University of
Chicago graduate students in afield linked to public health or
social work.
Most of them are students atthe Crown School of Social Work,
one of the best programs in theworld, and we have a
partnership with Crown wherestudents are able to serve as
case managers as part of theirfield placement, which makes it
(15:57):
a core part of their degree.
Through that program theyreceive mentorship from a
seasoned MSW and it's kind of away to launch their careers in
social work with an experiencein the field doing work serving
clients.
We are really lucky to be at auniversity with a ton of gifted,
passionate public servantstudents, and it's been amazing
to sort of have this elegantsolution to the problem of case
(16:20):
management.
Speaker 1 (16:21):
That's another win-win which you guys seem to
be really good at finding.
It's our preferred approach.
How long have you been offeringthese services, ruby?
How long?
Speaker 2 (16:31):
have you been offering these services, Ruby?
So the idea of Project Donorwas born in spring 2022.
Our first surgery was inFebruary 2023.
Speaker 1 (16:39):
What did you do to celebrate that first surgery?
Speaker 2 (16:41):
Actually, a colleague and I flew out to Philadelphia
to support Victoria, our firstever donor, as she went into
surgery.
We were able to meet her andher kids and EJ, who was a young
boy in her community to whomshe was donating.
So Victoria donated to astranger and received a voucher
(17:07):
that she was able to give to EJ,who could then redeem it when
he needed it, and so we wereable to celebrate with the
recipient and the donor andtheir families in person, which
was really magical.
Speaker 1 (17:13):
That is really magical.
I'm glad that you guys took thetime to celebrate.
I don't think that we take thetime to celebrate those wins,
and that was the first big winof how many now?
Speaker 2 (17:23):
We're at about 20 surgeries and we have four folks
who have achieved all theirgoals and are awaiting surgery
and how many people have optedinto your program total so far?
So we currently have 221 peoplein our program and our program
has hosted over 300 peopleoverall.
Yeah, it's growing incrediblyfast.
(17:43):
We have more than 30 transplantcenters represented among our
participants and we anticipatethe project donor will lead to
dozens and then hopefullyhundreds, of additional
donations each year.
Speaker 1 (17:54):
And who are you mostly helping?
Speaker 2 (17:56):
Is it men, women, both, the majority of
participants on our program arewomen, and the majority of folks
are pursuing weight lossresources as opposed to smoking
cessation, and the ethnicbreakdown of our program pretty
much matches the generalpopulation.
Speaker 1 (18:12):
Interesting.
Are there resources availableto donors who've already donated
post-donation?
Speaker 2 (18:18):
So everyone who achieves eligibility and donates
through Project Donor hasaccess to our resources.
Following donation, we ask thateveryone on our program
continue for at least a year andwe offer resources past that
point.
If one of our participants runsinto health challenges down the
line, we want them to be ableto come back to Project Donor
and get the support they need tomaintain their health long-term
(18:38):
.
At this point, we're not ableto provide support to
post-surgery donors who were notinvolved with Project Donor
before their surgery.
Speaker 1 (18:46):
Fair enough.
And Rachel, are you still usingNoom as a resource?
Speaker 3 (18:53):
Yeah, I'll just say I've been revisiting it and
using Noom again and it's greatto still have that resource and
access to it, even though it's10 months past my donation.
Speaker 1 (19:01):
That's great.
You mentioned that it's maybepost-donation.
It's hard to get to the gym,right?
Has Project Donor consideredoffering drugs like Ozempic to
donors who are struggling to getthat weight off?
Speaker 2 (19:15):
Weight loss drugs like Ozempic are such a hot
topic in transplant and beyondright now and, like many people,
we at Project Donor arecautiously optimistic about the
prospect of Ozempic forlegitimate medical use in the
world of living donation.
So far we have no plans topursue it or to provide weight
loss medications to ourparticipants, at least until
(19:37):
transplant physicians,bioethicists and social workers
have approached a more solidconsensus on its use in donor
candidates.
Two things are really salientin how I'm thinking about some
of the glutide drugs likeOzempic.
First, it's extremely expensiveand second, it has to be taken
forever in order for patients,whether donors or recipients, to
maintain the effect, and sothis makes the weight loss drugs
(20:00):
a categorically different levelof investment than the
behavioral interventions that wefocus on today, and we haven't
seen clear signals from thetransplant physician community
that they're approaching aconsensus about the safe use of
these drugs and donor candidates, so until then it's not really
on the table for us.
But my main concern is thatthis is a resource that needs to
be taken into perpetuity, andit's really important that
(20:22):
people who are concerned withdonor and recipient wellness are
ready to provide it as aresource into perpetuity,
because otherwise I think wecould see real, real backsliding
in folks' health conditions.
Speaker 1 (20:34):
Rachel, had that been in the menu of options next to
Noom, how would you have feltabout that?
Speaker 3 (20:41):
Yeah, that's a great question and I don't know much
about it, but I do love an easyway out, me too.
I mean, I think that's a veryhuman thing to want right, and
especially when you see likecelebrities using it, and if it
had just been like a littleoption there, I could have
(21:01):
rationalized it.
Oh, project Donor supports it.
So it's probably good, ruby,that you guys are giving it more
consideration, because there'speople like me who would not
think twice and would click thelittle button and then end up
having to take it for the restof my life.
But I'm really interested tosee how long-term it impacts
people and to see what the sideeffects are, if any.
Speaker 1 (21:26):
I mean, I guess what scares me about it is there's
this drug available to them tohelp them get skinny, and we've
got this culture in our countryof being obsessed with being
skinny.
Are we donating a kidney to getour Ozempic or is that just out
there thinking on my part thatpeople might go to the extent of
donating a kidney to havelifetime access to a drug that's
(21:47):
going to keep them looking good?
Speaker 3 (21:49):
Yeah, that's a great concern.
I don't have an answer for it,but that is a great concern.
Speaker 2 (21:56):
I would jump in and say that is, I think, one of the
biggest concerns when we talkabout what undue influence would
look like.
It's why none of ProjectDonor's resources are, or will
ever be, conditional on donation.
We never feel like they'repursuing these resources because
they can't get them anywhereelse and then they're obliged to
donate.
Culturally, america isincredibly broken, I think, in
(22:18):
the way it thinks about weightand appearance and health and
the way it conflates those three.
I think the sociologist and NewYork Times columnist Tressie
McMillan Cottom has writtenabout this really, really well
and talking about how weightloss drugs like Ozempic threaten
to upend how we think aboutweight, how we think about how
(22:39):
people look as a perfectindicator of their health.
For example, bmi is not aperfect indicator of health.
It's not a one size fits allindicator and there's lots of
really good literature on thereon why it's not maybe the best
way to assess people's health,and so I think that the
transplant community and ourbroader society has so much work
(23:01):
to do and how we think aboutthe relation between weight and
health.
Ozempic could have lots ofbenefits, but I think it'll only
make that more complicated.
Speaker 1 (23:09):
That's so interesting .
I'll be curious to see whathappens with that and what the
long-term studies indicate.
So, ruby, what's next for RISCand Project Owner?
Speaker 2 (23:18):
Project Owner will keep helping people achieve
donation eligibility andsupporting our donors before and
after surgery.
That's on the nonprofit servicesand implementation side of
things, but on the research side, risk is also a think tank.
We've just released a reportbased on about two dozen
interviews with members of thetransplant community.
So in the future I'd love tobuild on that report, which
(23:40):
identified key obstacles ofpotential interventions to
improve America's living organdonation system.
I'd love to work on moreprojects in organ donation,
potentially developingstructures to reimburse donor
candidates for the bureaucraticburdens involved in the
evaluation process for organdonation.
I'd love to work on developinga voucher system for liver
(24:01):
donations to bring thatremarkable technology that
exists in the world of kidneysto liver donors and recipients,
and I'm very interested in theconversations about compensation
happening in the transplantcommunity.
Right now.
I suspect we're in a reallyunique moment for reform, teed
up by Biden's dismantling of theUNOS monopoly and his signaled
(24:21):
interest in organ donationreform, and so I'm really
curious what the next few yearsbring.
Our founder, steve Levitt,hosts a podcast called People I
Mostly Admire, which Idefinitely recommend, and so
there's more to come from riskoutside of the realm of organ
donation too.
Speaker 1 (24:37):
For the sake of the transplant community.
I hope that you personallystick in this industry, ruby,
because you are helping so manypeople and you should be really
proud of this program thatyou've grown.
It's just truly incredible.
I'm looking at a donor rightnow who is here having donated
because of your program, lori.
Speaker 2 (24:54):
That's incredibly kind, and I think for us, donors
are heroes already, andanything that our society and
our institutions can do tosupport them is an essential
service, and so I'm just sograteful to Rachel and all of
the folks who have donatedthrough Project Donor.
Interacting with donors, youknow all the time, is the best
part of my job, because they areremarkable people who bring
(25:18):
energy and goodwill to everyspace that they join, and so I
feel incredibly fortunate tohave fallen into this world, and
I hope I can get to continue towork in it.
Speaker 1 (25:26):
So, rachel, what would you say to another
prospective donor who needs tolose some weight to donate?
Speaker 3 (25:32):
I don't know how wise I am, but I think of what I
wish that I had told myself atthe time that I was going
through the process, and I thinkthere's really two things that
I can take away from it, one ofwhich is, you know, looking at
the culture of of weight lossand, just in general, you know
(25:52):
what you're doing in thatprocess.
The end goal is not just to beable to donate a kidney, but is
to overall have a healthier body, and I think in the act of
pursuing health, it's importantto not do harm, and weight loss
culture can be so wrapped up invery unhealthy methods.
(26:12):
And also, you know just theconcept that the timeline for
that process is different foreveryone.
It's hard because you can bedoing it and someone's waiting
on your kidney.
It could be a loved one, itcould be a stranger, and so
there's that artificial pressurethat's put on it.
And you know I lost 17 poundsover the course of three months
(26:33):
and during that process itreally felt like I was not doing
it fast enough.
But there are a lot of wrongways that can negatively impact
you.
So to prioritize your wellbeing, both health-wise and mentally,
I think are really importantwhen you're going through this
process.
Speaker 1 (26:50):
I couldn't agree with you more.
That is wonderful advice.
Thanks so much for sharing yourstory with us today.
Thank you, thanks for having me.
I've been looking forward tothis interview and I have
appreciated getting to know bothof you so much, so thank you
for coming today.
Thank you, guys.
You guys are great and veryeasy to talk to.
Welcome back to Donor Diaries.
I'm your host.
Lori Lee Ever pondered theannual count of individuals who
donate a kidney each year?
It hovers around 6,000, yet,despite advancements in
technology and thesimplification of surgery over
the past quarter century, thisfigure remains relatively
stagnant.
Though precise figures elude ushere, it seems that less than
(00:23):
10% of those expressing initialinterest in donation actually
proceed to surgery.
During the first step ofevaluation, which is an
extensive health survey,somewhere around 20% of
prospective donors aredisqualified.
These numbers vary from centerto center.
Additional drop-offs occur dueto wavering commitment,
(00:43):
recipients finding alternatedonors or unfortunate
circumstances like when theintended recipient passes away.
The paramount concern ElevatedBMI.
Most transplant centers set aBMI threshold of 35 or below for
donor eligibility.
Currently, over 30% ofAmericans are overweight and
more than 42% are obese, sonaturally we can expect these
(01:07):
prospective donors to be ruledout.
But what if these individualsteeter on the brink of a healthy
BMI?
What if minor lifestyleadjustments could render them
eligible to donate?
Wouldn't it be remarkable if wecould aid these prospective
donors in qualifying?
Today we're joined by guests whodelve into this matter Ruby
(01:28):
Rorty, an analyst at StephenLevitt Center for Risk,
spearhead's project donor, arisk-incubated nonprofit
dedicated to assisting liver andkidney donor candidates in
attaining transplant eligibility.
Alongside Ruby, we have RachelWatson, a non-directed kidney
donor whose journey benefitedfrom this remarkable program.
(01:48):
Welcome, ruby and Rachel.
Thanks.
Thank you so much for having us.
Ruby, let me start with you.
Can you tell us what RISC is?
Speaker 2 (01:58):
The Center for RISC, which stands for Radical
Innovation for Social Change, isa think tank and nonprofit
incubator at the University ofChicago.
We were founded by Freakonomicsco-author, steve Levitt, and at
RISC we seek unconventionalsolutions to big problems.
We work on a wide range ofissues.
A few that come to mind areadverse placements among foster
(02:22):
youth, green infrastructure,evidence-based curricular
initiatives and organ donation.
Speaker 1 (02:28):
Can you give us an example of a risk initiative
that summarizes what you mean bybig problems with elegant
solutions?
Speaker 2 (02:36):
Gosh, so we were working with Twitter and talking
about partisanship and thequality of online discussion,
and the result of thatcollaboration is what became
Twitter Community Notes.
And so that was a situationwhere risk analysts had this
(02:57):
idea that where tweets withoutsort of audience feedback could
spiral into misinformation andreally contentious debate, there
was this idea of crowdsourcing,fact fact checks and just
relying on the Twitter communityto be able to have a meta
conversation.
Community notes were somethingthat I think made that platform
workable and that distinguish itfrom other platforms like
Instagram and Facebook.
Speaker 1 (03:18):
It's exciting work.
So what is Project Donor?
Speaker 2 (03:21):
Project Donor was born when a former risk analyst
who was interviewing medicalprofessionals to identify gaps
in medical access learned thatmany people who are eager to
give the life-saving gift of akidney or liver to a loved one
or a stranger are turned away atthe door for mutable health
reasons like BMI or, at somecenters, cigarette use.
(03:42):
Oftentimes these donorcandidates are not informed that
they could become eligibledonor candidates with lifestyle
changes, and so this insightbecame Project Donor, and we are
devoted to helping living organdonor candidates achieve
eligibility and their healthgoals in advance of donation and
to maintain their health in thelong run.
(04:03):
A bunch of our team comes froman economics background.
I studied economics, so one wayto think about it from an
economic perspective is that youhave this sort of human supply
chain in healthcare of donorsand of organs from living donors
.
At this moment, you have abunch of people who are almost
making the eligibility cut andthey are really excited.
(04:26):
I mean, often their wellbeingis hugely tied to whether
they're able to be a donor,because the most important
person in their life will diewithout an organ and is not
likely to receive one, you know,from off the waiting list or
from a deceased donor, and sothese people are falling just
short, and often the intuitionamong nonprofits and experts in
(04:46):
transplant is to go and try torecruit more living donors,
which is a practice that Itotally endorse.
I think more people should beliving donors, but we have this
idea instead of working with thepeople who are just short of
eligibility, but who would besafe, healthy candidates with
just a little extra support.
Speaker 1 (05:04):
So you're looking at your supply chain and you're
saying isn't it easier to justhelp this person become eligible
versus go out and find a newperson who is eligible?
Speaker 2 (05:13):
Our research suggests , as you mentioned in the
introduction, that over 90% ofpeople who take the first step
toward organ donation neverultimately undergo surgery.
Data from the National KidneyRegistry, the NKR's screening
service, suggests that about athird of people who are ruled
out by the NKR in that initialstage are excluded due to BMI,
(05:35):
and at some centers, nicotineusers are also excluded, which
adds to the number of peoplebeing rejected for mutable
health concerns.
And so, from where we'restanding, this amounts to
potentially thousands of peoplewho are eager candidates for
living donation, who couldsafely qualify, but who aren't
given the tools necessary toachieve eligibility.
Speaker 1 (05:54):
Wow, that's really important.
So what specifically doesProject Donor offer to potential
donors?
Speaker 2 (06:01):
So we partner with a number of corporate providers
who allow us to offer weightloss, smoking cessation and
emotional support resources toour donors free of charge.
The program that people pursueis up to them and customizable
depending on what mutable healthissue has been flagged by their
transplant teams.
Folks who are in our weightloss program receive a free
(06:23):
electronic scale delivered totheir door and can choose
between three commercial weightloss systems new nutrition,
on-point nutrition and WWformerly Weight Watchers.
Those who are in our smokingcessation program receive
nicotine products, gum patches,lozenges delivered to their door
, and our participants also,regardless of whether they're in
(06:44):
the smoking or weight lossprogram or both, also have
access to free talk therapy viaBetterHelp Online Therapy.
In addition to these materialhealth resources, every Project
Donor participant is assigned acase manager who's kind of like
a coach and a cheerleader, andtheir case manager checks in
with them, texting and callingthem, helping them problem solve
(07:05):
when obstacles arise, andcelebrates every step of the
donation journey with them.
Speaker 1 (07:09):
What a great partner that would be for somebody.
Rachel, you know firsthand whatit's like to work with Project
Owner.
Can you tell us which programyou took advantage of and why?
Speaker 3 (07:21):
I took advantage of the Noom program which, prior to
being connected with ProjectOwner, I had never heard of Noom
before.
So when those three optionswere given to me, the only one
that I'd heard of was WeightWatchers, or WW, as you said,
ruby, and that was somethingthat I had heard of Weight
Watchers growing up, and it justseemed like Noom was a little
(07:45):
bit more modern.
It definitely met thatmillennial minimalist vibe, so I
was more drawn to that.
I really liked the layout of itand it worked really well for
me.
Speaker 1 (08:00):
Can you tell us a little bit about what happened
when you initially steppedforward to donate?
Speaker 3 (08:04):
I first found out kind of about the need for
kidney donation right after Igraduated college and I'd read a
newspaper article about theprocess and it was highlighting
someone who was looking for akidney and who actually received
one from a member in thecommunity.
And you know, I'm fortunateenough to have been pretty
(08:26):
ignorant to what that wholeprocess is like.
I didn't know anyone who hadkidney disease or had to get
transplanted in Oregon.
So reading about it, it reallywas pretty shocking to me the
number of people that werewaiting and what that process is
like for them.
I live in Chicago and I amlucky enough to have a lot of
(08:46):
different options when coming to, you know, looking at
healthcare providers and reallyfantastic systems in the area.
So the first one I reached outto actually, you know, I had the
initial pre-screening phonecall and we got to a question
about BMI and after we answeredthat, like it was it was done,
(09:08):
the conversation was over.
They were like you know, youdon't qualify.
There was no discussion about apath forward, it was just end
of the phone call, that's it.
And so I ended up after thatreaching out to another
transplant center, loyola, andthey were the ones who actually,
after I passed all of the othertesting, came back and referred
(09:29):
me to Project Owner.
Speaker 1 (09:31):
What did it feel like to be turned away by that first
center it?
Speaker 3 (09:35):
sucked.
It did not feel good.
It is hard when the topic isweight and especially body image
.
Yeah, you know, for that to bethe one obstacle that's in the
way of donating seems especiallytricky because on paper they
(09:58):
came back and they saideverything looks great, but just
to make sure that you're in thehealthiest possible state, we
want you to lose 17 pounds,which that's something I totally
respect and I don't have anyissue with that.
I'm glad that I did it.
It's such a harder task thanjust lose 17 pounds, and it's
(10:18):
not about the work or theroutine change that goes along
with losing weight.
It's dealing with the emotionsthat go with really addressing
that and to have that be thething that is stopping trying to
help another person.
In a way, like I, view organdonation as the ultimate
empowerment of your own body.
(10:39):
Right, you're taking a healthypart of you and giving it to
someone else so that they can behealthier, and that's so
affirming.
I first became aware ofnegative feelings surrounded my
weight in my body when I was inthird grade.
And I was going through thisprocess when I was 26.
So that's 18 years of it beingthe dark cloud, the elephant in
(11:04):
the room, and to have this thingthat you've been thinking about
for 18 years be the thingthat's in the way of donation
was just a lot to kind ofemotionally grapple with at
first.
Speaker 1 (11:16):
I was also told I had to lose a little bit of weight
before I donated and, like yousaid, it's something that I was
already ultra aware of.
It was something I knew that,even if I wasn't going to donate
my kidney would be healthy forme to do, but I certainly would
have been super frustrated if itstood in my way.
Imagine what that would feellike the pressure to lose 20
pounds quickly so that you cansave somebody who loves life now
(11:39):
.
Speaker 3 (11:40):
I remember the days where it's like you know, you
weigh yourself every day and yougain an ounce and you feel like
, oh my God, am I ever going tobe able to do this thing?
I'm letting everyone down, I'mwithholding this gift to someone
else.
It's so frustrating and it's soeasy to feel defeated when
you're working with somethingthat has so much riding on it.
Speaker 1 (12:04):
Yeah, exactly.
So what was their team like to?
Speaker 3 (12:08):
work with Project donor.
They could not have been easierto work with, really.
So I got the recommendationfrom Megan Parker she's the
living donor coordinator over atLoyola and I think within 24
hours someone from project donorcalled me and I remember being
two months into working withthem and realizing that I had
(12:31):
never had a need to Google themor go to their website, which
I'm the type of person if I'mgoing out to eat, I'm Googling
the restaurant, I'm looking atthe menu, I'm looking at photos
of the interiors.
So the fact that I'd had aworking relationship with an
organization who had beensupporting me for months and
there was never a need to seekout any more information from
(12:52):
them because they were providingeverything that I needed, I
think that's really a testamentof how easy they were and how
positive of an experience it wasto work with them.
Speaker 1 (13:05):
So you said that you use Noom.
What other resources did theyhave available to you?
Speaker 3 (13:10):
I use Noom, and then I also had the team support
member who was checking in on me.
I think the early stages it wasNoah and then Tatiana, so yeah,
and they would just check inand it was a nice balance
between support without pressure.
The timeline of that processwas something that I was really
(13:30):
insecure about, especially givenmy first interaction with a
donation center being that ofdenial.
I really thought that if I tooktoo long, eventually Loyola or
Project Donor or someone wasgoing to come along and be like
you know what you're out, you'rejust flat out denied Good shot.
But it's over, yeah, and so Iwas really nervous about that,
(13:53):
but it wasn't something where Ifelt pressured by them.
It was supportive, it was notpressuring, which was something
I was really appreciative of.
And then I know they havecommunity meetings as well that
I think might have started rightafter I donated or around the
time that I was donating.
So I didn't attend any of those.
But I mean, even after donation, they've, they've kept up with
(14:17):
me and I actually I know Imentioned it on our call and I
also know that this is an audiomedium, so the listeners will
just have to trust me, but I didfind the card that they sent me
after I donated Ruby, your nameis signed to it, so thank you,
but they'll send me a card andan edible arrangement after I
donated and it's so sweet andobviously it meant enough that I
(14:38):
kept it.
So, yeah, they've just been solovely and supportive and I
really can't speak highly enoughabout my interactions with them
.
Speaker 1 (14:46):
Oh, did the edible arrangements include the
chocolate covered fruit or didthey?
Speaker 3 (14:51):
It did, and I ate those first.
Speaker 2 (15:00):
Rachel, I'm so happy you had a positive experience
with Project Donor.
We are so proud of all of ourdonors.
Speaker 1 (15:02):
We're really glad to hear it worked out, I know, and
she kept the card.
That's got to make you feelgood.
You really made a difference,ruby.
It does.
Speaker 2 (15:09):
I think people really appreciate the little extra
touch of something like a cardor an edible arrangement,
because so much of theexperience of donating in a
hospital is very clinical.
So it's just nice to have awhole team of people rooting for
you, whether it's across thecity or across the country.
Speaker 1 (15:26):
Ruby, can you tell us a little bit more about the
coaches that Rachel wasreferring to and what their
qualifications are?
Speaker 2 (15:34):
Yeah, so all of our case managers are University of
Chicago graduate students in afield linked to public health or
social work.
Most of them are students atthe Crown School of Social Work,
one of the best programs in theworld, and we have a
partnership with Crown wherestudents are able to serve as
case managers as part of theirfield placement, which makes it
(15:57):
a core part of their degree.
Through that program theyreceive mentorship from a
seasoned MSW and it's kind of away to launch their careers in
social work with an experiencein the field doing work serving
clients.
We are really lucky to be at auniversity with a ton of gifted,
passionate public servantstudents, and it's been amazing
to sort of have this elegantsolution to the problem of case
(16:20):
management.
Speaker 1 (16:21):
That's another win-win which you guys seem to
be really good at finding.
It's our preferred approach.
How long have you been offeringthese services, ruby?
How long?
Speaker 2 (16:31):
have you been offering these services, Ruby?
So the idea of Project Donorwas born in spring 2022.
Our first surgery was inFebruary 2023.
Speaker 1 (16:39):
What did you do to celebrate that first surgery?
Speaker 2 (16:41):
Actually, a colleague and I flew out to Philadelphia
to support Victoria, our firstever donor, as she went into
surgery.
We were able to meet her andher kids and EJ, who was a young
boy in her community to whomshe was donating.
So Victoria donated to astranger and received a voucher
(17:07):
that she was able to give to EJ,who could then redeem it when
he needed it, and so we wereable to celebrate with the
recipient and the donor andtheir families in person, which
was really magical.
Speaker 1 (17:13):
That is really magical.
I'm glad that you guys took thetime to celebrate.
I don't think that we take thetime to celebrate those wins,
and that was the first big winof how many now?
Speaker 2 (17:23):
We're at about 20 surgeries and we have four folks
who have achieved all theirgoals and are awaiting surgery
and how many people have optedinto your program total so far?
So we currently have 221 peoplein our program and our program
has hosted over 300 peopleoverall.
Yeah, it's growing incrediblyfast.
(17:43):
We have more than 30 transplantcenters represented among our
participants and we anticipatethe project donor will lead to
dozens and then hopefullyhundreds, of additional
donations each year.
Speaker 1 (17:54):
And who are you mostly helping?
Speaker 2 (17:56):
Is it men, women, both, the majority of
participants on our program arewomen, and the majority of folks
are pursuing weight lossresources as opposed to smoking
cessation, and the ethnicbreakdown of our program pretty
much matches the generalpopulation.
Speaker 1 (18:12):
Interesting.
Are there resources availableto donors who've already donated
post-donation?
Speaker 2 (18:18):
So everyone who achieves eligibility and donates
through Project Donor hasaccess to our resources.
Following donation, we ask thateveryone on our program
continue for at least a year andwe offer resources past that
point.
If one of our participants runsinto health challenges down the
line, we want them to be ableto come back to Project Donor
and get the support they need tomaintain their health long-term
(18:38):
.
At this point, we're not ableto provide support to
post-surgery donors who were notinvolved with Project Donor
before their surgery.
Speaker 1 (18:46):
Fair enough.
And Rachel, are you still usingNoom as a resource?
Speaker 3 (18:53):
Yeah, I'll just say I've been revisiting it and
using Noom again and it's greatto still have that resource and
access to it, even though it's10 months past my donation.
Speaker 1 (19:01):
That's great.
You mentioned that it's maybepost-donation.
It's hard to get to the gym,right?
Has Project Donor consideredoffering drugs like Ozempic to
donors who are struggling to getthat weight off?
Speaker 2 (19:15):
Weight loss drugs like Ozempic are such a hot
topic in transplant and beyondright now and, like many people,
we at Project Donor arecautiously optimistic about the
prospect of Ozempic forlegitimate medical use in the
world of living donation.
So far we have no plans topursue it or to provide weight
loss medications to ourparticipants, at least until
(19:37):
transplant physicians,bioethicists and social workers
have approached a more solidconsensus on its use in donor
candidates.
Two things are really salientin how I'm thinking about some
of the glutide drugs likeOzempic.
First, it's extremely expensiveand second, it has to be taken
forever in order for patients,whether donors or recipients, to
maintain the effect, and sothis makes the weight loss drugs
(20:00):
a categorically different levelof investment than the
behavioral interventions that wefocus on today, and we haven't
seen clear signals from thetransplant physician community
that they're approaching aconsensus about the safe use of
these drugs and donor candidates, so until then it's not really
on the table for us.
But my main concern is thatthis is a resource that needs to
be taken into perpetuity, andit's really important that
(20:22):
people who are concerned withdonor and recipient wellness are
ready to provide it as aresource into perpetuity,
because otherwise I think wecould see real, real backsliding
in folks' health conditions.
Speaker 1 (20:34):
Rachel, had that been in the menu of options next to
Noom, how would you have feltabout that?
Speaker 3 (20:41):
Yeah, that's a great question and I don't know much
about it, but I do love an easyway out, me too.
I mean, I think that's a veryhuman thing to want right, and
especially when you see likecelebrities using it, and if it
had just been like a littleoption there, I could have
(21:01):
rationalized it.
Oh, project Donor supports it.
So it's probably good, ruby,that you guys are giving it more
consideration, because there'speople like me who would not
think twice and would click thelittle button and then end up
having to take it for the restof my life.
But I'm really interested tosee how long-term it impacts
people and to see what the sideeffects are, if any.
Speaker 1 (21:26):
I mean, I guess what scares me about it is there's
this drug available to them tohelp them get skinny, and we've
got this culture in our countryof being obsessed with being
skinny.
Are we donating a kidney to getour Ozempic or is that just out
there thinking on my part thatpeople might go to the extent of
donating a kidney to havelifetime access to a drug that's
(21:47):
going to keep them looking good?
Speaker 3 (21:49):
Yeah, that's a great concern.
I don't have an answer for it,but that is a great concern.
Speaker 2 (21:56):
I would jump in and say that is, I think, one of the
biggest concerns when we talkabout what undue influence would
look like.
It's why none of ProjectDonor's resources are, or will
ever be, conditional on donation.
We never feel like they'repursuing these resources because
they can't get them anywhereelse and then they're obliged to
donate.
Culturally, america isincredibly broken, I think, in
(22:18):
the way it thinks about weightand appearance and health and
the way it conflates those three.
I think the sociologist and NewYork Times columnist Tressie
McMillan Cottom has writtenabout this really, really well
and talking about how weightloss drugs like Ozempic threaten
to upend how we think aboutweight, how we think about how
(22:39):
people look as a perfectindicator of their health.
For example, bmi is not aperfect indicator of health.
It's not a one size fits allindicator and there's lots of
really good literature on thereon why it's not maybe the best
way to assess people's health,and so I think that the
transplant community and ourbroader society has so much work
(23:01):
to do and how we think aboutthe relation between weight and
health.
Ozempic could have lots ofbenefits, but I think it'll only
make that more complicated.
Speaker 1 (23:09):
That's so interesting .
I'll be curious to see whathappens with that and what the
long-term studies indicate.
So, ruby, what's next for RISCand Project Owner?
Speaker 2 (23:18):
Project Owner will keep helping people achieve
donation eligibility andsupporting our donors before and
after surgery.
That's on the nonprofit servicesand implementation side of
things, but on the research side, risk is also a think tank.
We've just released a reportbased on about two dozen
interviews with members of thetransplant community.
So in the future I'd love tobuild on that report, which
(23:40):
identified key obstacles ofpotential interventions to
improve America's living organdonation system.
I'd love to work on moreprojects in organ donation,
potentially developingstructures to reimburse donor
candidates for the bureaucraticburdens involved in the
evaluation process for organdonation.
I'd love to work on developinga voucher system for liver
(24:01):
donations to bring thatremarkable technology that
exists in the world of kidneysto liver donors and recipients,
and I'm very interested in theconversations about compensation
happening in the transplantcommunity.
Right now.
I suspect we're in a reallyunique moment for reform, teed
up by Biden's dismantling of theUNOS monopoly and his signaled
(24:21):
interest in organ donationreform, and so I'm really
curious what the next few yearsbring.
Our founder, steve Levitt,hosts a podcast called People I
Mostly Admire, which Idefinitely recommend, and so
there's more to come from riskoutside of the realm of organ
donation too.
Speaker 1 (24:37):
For the sake of the transplant community.
I hope that you personallystick in this industry, ruby,
because you are helping so manypeople and you should be really
proud of this program thatyou've grown.
It's just truly incredible.
I'm looking at a donor rightnow who is here having donated
because of your program, lori.
Speaker 2 (24:54):
That's incredibly kind, and I think for us, donors
are heroes already, andanything that our society and
our institutions can do tosupport them is an essential
service, and so I'm just sograteful to Rachel and all of
the folks who have donatedthrough Project Donor.
Interacting with donors, youknow all the time, is the best
part of my job, because they areremarkable people who bring
(25:18):
energy and goodwill to everyspace that they join, and so I
feel incredibly fortunate tohave fallen into this world, and
I hope I can get to continue towork in it.
Speaker 1 (25:26):
So, rachel, what would you say to another
prospective donor who needs tolose some weight to donate?
Speaker 3 (25:32):
I don't know how wise I am, but I think of what I
wish that I had told myself atthe time that I was going
through the process, and I thinkthere's really two things that
I can take away from it, one ofwhich is, you know, looking at
the culture of of weight lossand, just in general, you know
(25:52):
what you're doing in thatprocess.
The end goal is not just to beable to donate a kidney, but is
to overall have a healthier body, and I think in the act of
pursuing health, it's importantto not do harm, and weight loss
culture can be so wrapped up invery unhealthy methods.
(26:12):
And also, you know just theconcept that the timeline for
that process is different foreveryone.
It's hard because you can bedoing it and someone's waiting
on your kidney.
It could be a loved one, itcould be a stranger, and so
there's that artificial pressurethat's put on it.
And you know I lost 17 poundsover the course of three months
(26:33):
and during that process itreally felt like I was not doing
it fast enough.
But there are a lot of wrongways that can negatively impact
you.
So to prioritize your wellbeing, both health-wise and mentally,
I think are really importantwhen you're going through this
process.
Speaker 1 (26:50):
I couldn't agree with you more.
That is wonderful advice.
Thanks so much for sharing yourstory with us today.
Thank you, thanks for having me.
I've been looking forward tothis interview and I have
appreciated getting to know bothof you so much, so thank you
for coming today.
Thank you, guys.
You guys are great and veryeasy to talk to.
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