February 4, 2025 • 56 mins
Kevin Longino's journey from kidney transplant recipient to CEO of the National Kidney Foundation is nothing short of inspirational. Battling a rare kidney disease, Kevin found hope and guidance through the NKF, ultimately transforming his personal struggle into a mission to support others. Join us as we explore the crucial work being done under Kevin's leadership to enhance early detection, expand organ donation, and improve policies for millions affected by kidney disease.
The episode also tackles the critical issue of post-transplant medication access. Hear about the challenges faced by transplant recipients who must choose between essential medications and basic living expenses, risking a return to dialysis. Discover the advocacy efforts behind the Immunosuppression Bill and how engaging with lawmakers like Congressman Jim Himes sparked change. Through Kevin's lens, we discuss the NKF's tireless dedication to ensuring life-saving drugs are accessible, shaping a future where healthcare policy serves those in need.
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:04):
Welcome to the very first episode of let's Talk
Transplant.
Before I get into announcingwho my guest is for today, I
just want to take a brief momentto thank two very special
people, because without them, Iwould not be on the air right
now.
They are actual donors.
They're both living donors, butthey also donated because they
(00:26):
felt that a podcast like thiswas necessary.
And they heard my previouspodcast when I was over at the
National Kidney Registry andafter I left there they wanted
me to continue and theygraciously have given me the
funding to do six episodes.
So I'm truly grateful.
They know who they are and Ijust wanted to say thank you.
(00:46):
Well, I am super excited tointroduce my very first guest on
the very first episode of let'sTalk Transplant, and his name
is Kevin Longino.
A fellow Italian, he's the CEOof the National Kidney
Foundation, also known as theNKF, the largest, most
comprehensive and longstandingorganization dedicated to the
(01:08):
awareness, prevention andtreatment of kidney disease.
As a kidney transplantrecipient himself, kevin brings
a deeply personal connection toNKF's mission, advocating
tirelessly for the 37 millionAmericans living with kidney
disease and the millions more atrisk living with kidney disease
and the millions more at risk.
Under his leadership, ncaf haschampioned groundbreaking
initiatives, from improvingearly detection and access to
(01:29):
care to advancing policies thatexpand organ donation and
transplantation.
Kevin's unique perspective andrelentless passion have
positioned him as a leadingvoice in improving kidney health
and saving lives.
And Kevin Longino, welcome tolet's Talk Transplant.
How do you feel being the firstguest on this podcast?
Speaker 2 (01:51):
You know, Mike, I am deeply honored to be the first
guest on what I hope to be afantastic, successful podcast
that talks about transplant andtalks about the need for it and
the blessing of it and how itcan immediately start saving
more lives.
Speaker 1 (02:08):
Thank you.
I really couldn't think of abetter person, because we're
going to go into in a fewminutes about what the National
Kidney Foundation is and what itdoes.
But you know, the reach of theNational Kidney Foundation is
just so vast that I, you know, Ithought it was crucial and, of
course, this podcast is notalways going to be about kidneys
.
I'm a kidney donor, your kidneyrecipient but my goal is to
(02:30):
talk about all things transplantand ultimately, what I want to
do is create awareness.
I want to inform people and Ihope that more people receive
transplants.
So, you know, I did mentionthat you are a kidney recipient
and, if you don't mind, I'd lovefor you to share a little bit
about your, your story and andwhat happened and how you found
out about it and how you got thekidney and all that good stuff,
(02:52):
and then we can get into theNational Kidney Foundation.
Speaker 2 (02:54):
Yeah, sure, um, uh, I'm happy to talk about that.
So my story, um, is unique andI'll explain why in a second.
But uh, but I I was.
I found out that I had kidneydisease because I went into my
primary care position with justheadaches that were just
unbearable and they didn't makegoing on for two or three weeks
and and uh, no amount of a leaveand aspirin would really make
(03:17):
them go away.
And so I went to see him and myblood pressure was just off the
charts, it was.
It was I don't remember theexact numbers, but it was high,
160s, high 120s, and I wasactually too young to have
numbers like that.
He went through kind of thenormal things around what's
going on with your diet?
Of course it was bad.
(03:38):
What's going on with the stressin your life?
Of course I had a lot.
I was working in the computerindustry it was the real rock
and roll period of the computerindustry and working, you know,
14, 12, 14 hour days.
And so he almost brushed it offto just bad diet and in stress.
But he turned right as he waswalking out of the room.
(03:58):
He turned back and looked at meand said do you have a history
of kidney disease in your family.
I said, well, matter of fact, Ido.
My grandfather died of kidneyfailure.
And he said when was that?
And I said, well, I think hewas 41 years old, it was 1953.
My mom was a teenager and hesaid well, how old are you?
(04:19):
And I said 39.
He said, oh wow, we need to getyou to a nephrologist.
And so from there I went to anephrologist and had a biopsy,
found out that I had an inherentgenetic kidney disease, called
focal segmentalglomerulosclerosis, or FSGS for
short.
And from there, you know, waswas quite shocked, quite taken
(04:42):
aback, that to me I had justgotten a death sentence.
I was going to die young, justlike my grandfather had died,
and it was pretty startling.
But my nephrologist, when I wentinto his office, there were all
these brochures on the wall andon the counter that talked
about National Kidney Foundation, talked about kidney transplant
(05:05):
doctor, what kidney disease?
Talked about kidney dialysis.
And when I went in and got thediagnosis, the the position kind
of walked me through what mychoices were, what a plan might
look like, and he said yourkidneys are gonna fail.
Probably in six months you'regonna need to go on dialysis if
you do everything I tell you todo, we can probably stretch that
out to a year, but you've gotto get ready.
(05:27):
And he handed me some morebrochures from National Kidney
Foundation and I went home andkind of put them all out on the
kitchen table and tried to kindof get a grip on what was how my
life was drastically about tochange and I realized that the
National Kidney Foundation hadreally mapped out this whole
thing and knew exactly what Ineeded at the time.
(05:49):
Upon reflection, what I realizedlater was that I had never
heard of the National KidneyFoundation, but they had already
heard of me.
They already knew what I neededin that moment to deal with
that diagnosis, to get ready fordialysis, to get ready to be
transplant worthy.
Deal with that diagnosis, toget ready for dialysis, to get
ready to be transplant worthy.
So when I kind of got on theother side of this and
eventually got my transplant, Ibelieved I really owed the
(06:21):
universe, I owed people apayback and I was so grateful
for the National KidneyFoundation I started getting
involved as a volunteer withthem.
Speaker 1 (06:26):
so grateful for the National Kidney Foundation, I
started getting involved as avolunteer with them.
Wow.
So you mentioned, obviously,that you received the transplant
.
How did that come about?
Was it from a deceased donor?
A living donor?
Have you only had one?
Speaker 2 (06:33):
transplant.
I've only had one transplant,so that was well over 20 years
ago.
I was able to postpone dialysisfor about three years and I
kind of hovered above the cutofffor about three years and I got
waitlisted, and formallywaitlisted.
(06:54):
I was never part of theallocation because my kidney
function was hovering around 20,around a GFR of 120, which
we'll probably explain what thatmeans at this podcast or some
future podcast.
I'm 20, which will probablyexplain what that means at this
podcast or some future podcastbut I didn't really make the
threshold to go on theallocation for a long time and
what I found out was that yearslater, when I got involved with
(07:15):
the National Kidney Foundation,was that my physician was
managing me according to theguidelines that published by the
National Kidney Foundation ofhow to postpone and how to
manage kidney disease.
So another NKF blessing indisguise.
But once I was able to, once mykidneys failed to the point
(07:37):
where I needed to go on dialysis, I was properly waitlisted and
it was quite a short journey.
I mean not a lot of people knowthis I wasn't on the waitlist
very long.
I was only on for about threemonths.
Wow, you lived in Texas at thetime.
I lived in Texas.
Yeah, I was in Texas, and thereason I got it so quickly was
(07:59):
not because of anything I did Atthe time.
The algorithm, the matchingalgorithm said that if you had a
perfect match, it was such ararity that that person went to
the top of the wait list andthey didn't, and so that's what
happened to me.
I had a kidney become availablethat was such a perfect match.
This person was a geneticsibling to me and I got the
(08:22):
kidney very quickly.
And so, again, you know therewere 82,000 people in the wait
wait list then.
So to go to the top of thatlist is not is not just one out
of 82 000, but it's even moregenetically rare to be that that
close to someone, um, withoutthem being in the same family so
, if you don't mind me asking ifit's's not too personal um,
(08:44):
have you, did you ever want tomeet the family, or have you, or
is that not something that you,uh desired?
Well, I did write him.
I did write him a letter.
You know, in our system, in thetransplant system, that people
are unaware um, donors andrecipients can communicate with
each other anonymously throughthe OPO.
Donors and recipients cancommunicate with each other
(09:05):
anonymously through the OPO.
Um, but it but it's anonymous,and if you never hear back, you
never hear back, and I neverheard back from the family.
So what do you think about that?
I don't know what to thinkabout that.
I'm so, I'm so mixed about it.
Um, you know, um, I I made apromise to that family that I
would honor it and I would honorthe gift and, and I think
you've done that, I hope I'vedone that I'm still going to do
(09:28):
that.
Sure, I'm still getting upevery day trying to honor that
gift because I recognize howrare it was.
In fact, the whole scenario israre.
You know, kidney disease,kidney failure, is vastly
underdiagnosed.
In this country, 90% of peoplewalking around the U SS with
kidney disease haven't beendiagnosed.
You know that equals about 34million adults.
(09:50):
Most people find out they're inkidney failure by finding out
in the emergency room and it'stoo late.
Their kidneys already failed.
There's nothing they can do.
So the whole scenario, end toend, is is unique and I'm so
grateful for that that I feelcompelled to work at the
(10:11):
National Kidney Foundation as avolunteer and now as staff, to
change this.
Speaker 1 (10:17):
That's what kind of drew me to you for full
disclosure for people who arelistening.
I've known you now for severalyears, since my kidney donation.
We've even had dinner togethera couple of times and I've just
been so moved by your sincerity,your generosity, obviously
(10:39):
passion, and it's very unusual.
You know, the National KidneyFoundation is a very large
nonprofit but it's a very largeinstitution and it was, it's
just so refreshing to see a CEOof that with your type of
temperament and your personality.
So I, you know, I applaud whatyou, what you have done and what
(11:02):
you are going to continue to do.
But that probably is a goodsegue into how the heck did some
you know kidney recipientvolunteer and then become the
CEO of the National KidneyFoundation?
Was there like a lottery or didyou, you know, was it the right
day at the right time?
How did that happen?
Speaker 2 (11:20):
Well, you know I got.
I got involved.
I think it was luck andopportunity.
I got involved locally with theNew York office of the National
Kidney Foundation, just doinglocal volunteer work, you know,
helping out with the walk, whichis a big fundraiser and
community event that NationalKidney Foundation holds around
(11:41):
the country.
I met a lot of interestingpeople and because I did home
dialysis I actually didn't knowa lot of kidney patients until I
started going to these walksand started meeting people.
But because it was in New York,I met a lot of the national
board members for the NationalKidney Foundation who are
volunteers and I kept pressuringthem to get more involved, to
(12:04):
get more active.
I just felt like I had more tooffer.
And the next step, afterhelping out with local
fundraisers, was I got involvedin advocacy and I really wanted,
I really believed there wasmore to be done at an advocacy
level and I've continued that asCEO, but at the time as a
(12:30):
volunteer, I just thought therewas a lot that could be done.
The NCAF was really pushing abill then called the
Immunosuppression Bill.
That's not the formal name ofit, but the idea was really
important and it had to do withimmunosuppression, drugs benefit
from Medicare, and I reallykind of locked around this idea.
(12:51):
I thought it was ludicrous,quite frankly, that this
situation existed.
And the situation was this thatthe government, for a lot of
reasons, is the primary payerfor kidney disease and therefore
, and kidney failure inparticular, and therefore, once
they pay for the transplant, andthey would pay for the
immunosuppression drugs whicheveryone needs after they get a
(13:14):
transplant for about three years, and after three years they
would just stop the benefit.
After three years they wouldjust stop the benefit.
And you had all these peoplethat went through all this to
get a kidney and yet they weresuddenly having to choose
between paying their rent,paying their groceries and
paying for their drugs.
And a lot of people would makeshortcuts because they had to
(13:39):
and suddenly their kidneys wouldgo into kidney failure and
they'd be back on the wait listand they'd be back in dialysis
and it was just so unnecessaryand so we wanted to create a
benefit that would, that wouldextend that throughout their
life, as long as they didn'thave insurance some other way.
And and so I I had the team andin calf, the formal staff teach
(13:59):
me how to make a pitch, you know, to a congressman and I was.
I was also supportive of ourhad an incoming congressman here
in Connecticut named Jim Himes,and I spoke to him about this
bill and and asked him to be aco-sponsor of this bill.
And when I told him thesituation, you know he he's like
(14:21):
everyone he didn't believe itreally existed.
You know that why would we dosomething that ridiculous, you
know.
And and so we I got him to be asponsor of the bill and I kind
of got the bug for advocacy, wow.
So I think I think I've gottena little off track here with
(14:42):
your question, so that's okay.
Speaker 1 (14:44):
So you know.
What you were saying, though,is is you know it resonates,
because it was mind blowing tome that you have these donors
who you know upon death, youknow give this gift of life, and
you have living donors who givethis gift while they're living,
and then the government wascutting off the medication that
(15:04):
enables that gift to last,hopefully, 10, 15, 20 or more
years.
That just doesn't make anysense.
Speaker 2 (15:10):
It didn't.
It didn't, but I got the bugand I was able to get a
co-sponsor quickly fromCongressman Himes, who still
continues to be a fantasticsupporter of NCAF.
But I got the attention of somenational board members, which
is to kind of answer yourquestion how did I get in this
role?
And I was subsequently invitedto be a national board member
(15:34):
and again I kept asking foropportunities to be an active
and proactive volunteer and fromthat I got more projects as
board members, to be the boardsponsor of several internal
projects, got on the executivecommittee and then in March of
2015, the CEO left of NationalKidney Foundation and I was
(15:54):
working for myself as anindependent consultant to start
up tech companies and investorand I raised my hand again and
said I'll be the interim untilwe find someone full time.
So are you still the interim?
I'm still the interim.
I was the interim for about sixmonths and we did a national
search and eventually the boardliked what I had, what I was
(16:18):
doing, and asked me to stickaround.
So that will be 10 years inMarch when all that went down.
So Congratulations, that'sgreat, thank you.
Speaker 1 (16:26):
So you know we talked in pieces about what the
National Kidney Foundation does.
You know you described what itdid for you, but can you, you
know, in a nutshell, kind oftell the people who are
listening what is the NationalKidney Foundation and what's its
mission?
Why does it exist?
Speaker 2 (16:44):
Sure, Well, I think in the intro you did a good job
kind of giving a um, essentiallya border plate.
You know where the largestorganization focused on uh, the
awareness, prevention, uh andtreatment of kidney disease.
I think that's a, you know,that's a fact.
I think that a lot of peopledon't really know what that
means.
So, uh, what what?
I think that's a fact.
I think that a lot of peopledon't really know what that
means.
So what I think what we'retrying to do essentially is
(17:08):
three things we're trying toeliminate preventable kidney
disease and kidney failure inparticular and over 60% of
kidney failure is preventableand if it's diagnosed early, if
it's treated early, we're tryingto get to the point where
there's essentially no wait listanymore and that dialysis is a
(17:28):
temporary treatment, not alifestyle, and that you know
there's a lot of ways to saythat it's, you know, in the wait
list.
But you know, as we all know,as we all should know, there's
about 92,000 people on the waitlist, but there's over half a
million people on dialysis andthere's about 800,000 people in
total that are in later stagekidney failure.
(17:50):
Right.
Speaker 1 (17:52):
So you know you talked about that with your own
situation.
That you're.
You know that's the thing wehave people like.
Well, how could there be somany people on dialysis but
there's only 92,000 plus on thelist?
It's because their number isnot where it needs to be for
them to be listed.
But those people could surelybenefit from a kidney transplant
.
Speaker 2 (18:11):
Absolutely.
A kidney transplant right nowis the best treatment for kidney
failure by far, in everymeasure.
Speaker 1 (18:18):
Right, and I think I interrupted you.
So what was number three inevery?
Speaker 2 (18:22):
measure right and, I think, interrupted.
So what was number three?
You said the three things.
That number three isessentially I alluded to it in
dialysis.
We think dialysis should betemporary, but we also think it
should be a life, a conducive ofa productive lifestyle.
I mean, right now there's highrates of depression, there's
high rates of unemployment,there's high risk of comorbidity
if you're on dialysis.
Right now there are certaincancer diagnosis that are
(18:44):
actually have a better mortalitythan dialysis, and so you know,
we think that paradigm needs tochange.
I hate to use the word paradigm, but that's the best word I
have right now, but that has tochange.
So in a nutshell, we want to.
We want to eliminatepreventable kidney disease,
kidney failure everybody thatwants a kidney should get a
kidney and we want dialysis tobe a productive treatment that's
(19:08):
conducive to a productivelifestyle.
So we have a lot of ways thatwe're trying to affect that and
make that happen.
Speaker 1 (19:13):
So that's a perfect segue into the awareness and
protection segment that I wantedto talk about.
So you know, kidney disease hasbeen labeled as the silent
killer and you know, what do yousee as the biggest challenges
in raising awareness about earlydetection?
Speaker 2 (19:33):
I think there's several.
One is that we did a survey,probably.
One is that we did a surveyprobably 12 years ago now, and
about 70% of the adultpopulation in the US don't know
what kidneys are.
They don't know where they are,they don't know how many they
have and they don't know whatthey do.
In fact they don't even knowthat kidneys and urine are
(19:54):
related.
They don't know that kidneysproduce urine.
So you've got a fundamentalconsumer patient population that
don't know the value of kidneysand how it fits, and much like
they know what cholesterol does.
You know what.
They know what heart does andwhat blood pressure.
They kind of know the basics.
But that's a big burden andit's very, very expensive to
(20:17):
teach the American public.
You know it's hundreds ofmillions of dollars to teach the
American public about basichealth that we don't have,
unfortunately.
Speaker 1 (20:25):
Yeah, so how do we so ?
That's a great point because Italk about that, I've I've
talked about that with living,you know, kidney donation to
really it's good.
It takes money right To put outthe essays and stuff, so so how
do you?
So what do you do about that?
Like you know, all thegovernment people are listening
to this.
We need hundreds of millions ofdollars, right.
Speaker 2 (20:43):
Yeah, yeah, we do.
We are talking to thegovernment about that.
We've had some good discussionsabout how to address that with
CDC.
But of course, you know,funding is a big issue.
It's a federal government rightnow.
It has been for the last eightyears, but I'm hopeful, I remain
positive and hopeful.
Eight years, but I'm hopeful, Iremain positive and hopeful.
(21:04):
I think the second thing we cando is recognize that there is an
underdiagnosis problem.
I mentioned it earlier.
There's estimated 37 millionadults in the United States that
have kidney disease, that haveit, and 90% haven't been
diagnosed.
And we have proven this timeand time again by looking at
data sets from hospital systemsor primary care practices or
(21:30):
even payers looking at payersand we can see from the
electronic medical records thatthe two biomarkers of kidney
disease are present, there's anissue present, and yet there's
no corresponding diagnostic codeand there's no corresponding
treatment.
So we know this at a macrolevel and we know this at kind
of a systems practice level thatthis is just misdiagnosed.
(21:53):
So what we want to do is changethe system.
We want to change the system forhow primary care prioritizes
kidney disease, how theyrecognize it in practice, how
they restructure thereimbursement system for it, and
we've taken several approachesaround that, where primary care
(22:17):
providers, as we may have knownthey're very overworked and so
what we have to do is figure outhow to change their workflow.
So one of the things that we'vedone to address it is we've
created quality measures, andall primary care practices not
all, but for the most part, alarge majority of them compete
(22:40):
based on based on qualitymeasures.
So we've invented qualitymeasures for that.
Particularly for diabetics,people that are dealing with
type one, type two diabetesthere's quality measures that
require that their kidneys belooked at, given that's the
number one reason for kidneyfailure, and we're expanding the
quality measures to includehypertension, which is the
(23:00):
number two reason.
So systems behave on measuresand metrics.
So if you want to change thebehavior, change the metric.
So we're doing other things too, but that's kind of a highlight
of one of the things we'redoing.
Speaker 1 (23:12):
So it's commonly known to myself and probably
other people who are involved intransplant, but there are some
vast health disparities,especially, you know, within the
minority community, people ofcolor, and so how does the NKF,
you know, approach that and whatare you guys doing to help try,
and you know, fix that problem,because it's very clear and
(23:35):
prevalent?
Speaker 2 (23:43):
clear and prevalent, and so I'm glad you brought that
up.
Unfortunately, black Americansare three to four times more
likely to have kidney disease,kidney failure, followed by
Hispanic and followed byindigenous Americans and Asian
to some degree, and a lot ofthis is due to social
determinants of health.
It's due to lack of access tocare, it's due to diet, but it's
(24:08):
also due to, you know, geneticpropensity for kidney failure,
and so what we're trying to doto really address this, if we
think about awareness, is to doground-level, grassroots work in
those communities, and sothat's we're kind of.
You know, we have offices allover the country, and so we're
(24:29):
doing a lot of differentstrategies to really get in
those communities and talk tothose people in a one-on-one
level at the group level aboutwhat their risk is and that they
are at high risk and that theyshould get screened.
We're doing a lot of workaround translation so we can
speak to people in theirlanguage.
We're doing a lot of work insocial media, where we have a
(24:52):
test called Minute for yourKidneys, and you can go to
minuteforyourkidneysorg and gothrough a quiz and it'll tell
you at what level your riskmight be and then, if you are at
high risk.
It'll give you the questionsthat go take to a primary care
physician and say I want to betested and here's why.
And we've had wow, hundreds ofthousands of people that we've
(25:13):
captured their email address andwe are now doing the follow-up
to see what the outcomes were onthat.
But we're also working a lot ofthese system change ideas that I
alluded to earlier when I sayget into the primary care and
change how they operate.
We're really working a lot withfederally qualified healthcare
organizations which are dealingwith communities, poorer
(25:35):
communities.
Family medical centers are kindof the general term, how
they're referred to in thecommunity.
But we're working withfederally qualified health
organizations to really helpthem, give them the right tools
and the right practices and theright education.
We've even developed ongoingaccredited and non-accredited
(25:56):
medical education for communityhealth workers so they can, as
they maintain theircertifications, they learn about
kidneys and they learn abouthow to treat them, they learn
about how to spot the diagnosisand things like that.
So it's a very comprehensivemodel of what we're trying to do
and we actually have it branded.
It's called CKD Intercept andit means chronic kidney disease
intercept, or we're trying tointercept early so we can
(26:19):
postpone or prevent people fromever going to kidney failure in
the first place.
Speaker 1 (26:22):
So do you have some like big whiteboard or map or
something on the wall in youroffice that you can keep track
of the thousands, probably, ofinitiatives that the NKF is
doing?
Because I can barely rememberlike the four or five things
that my wife asked me to do,especially gets home.
Speaker 2 (26:39):
I know I literally do .
I have a 12-foot whiteboard inmy office.
Speaker 1 (26:43):
Look at that, and I haven't even been to your office
.
I was just taking a wild guess,yeah, yeah, I want to talk to
you quickly about someinnovation, because the NKF has
championed lots of innovationfor kidney care, so is there
anything exciting that you guysare working on now that pertains
to advancements?
Speaker 2 (27:02):
Yeah, there's a lot.
There's a lot of things we'reworking on that pertain to
advancement.
Speaker 1 (27:06):
Don't go through all of them because I'm going to
lose all my listeners on thisepisode.
Speaker 2 (27:09):
All right, Well you know cool ones, Thanks.
So I think a really cool oneyou'd like to hear about is the
work we're doing aroundxenotransplantation, and one of
the roles that NCAF can play isa neutral convener.
We can get the medicalcommunity, the regulatory
(27:31):
community, the patient communityand the physician community
together and take oncontroversial topics.
Speaker 1 (27:35):
Like the Switzerland of the kidney community.
Speaker 2 (27:38):
That's our goal, that's what we want to do.
A couple of years ago werecognized that, based on the
inertia that we could see intalking to all the companies and
medical centers that wereinterested in
xenotransplantation, was thatthey had a lot of common
problems but because of thenature of that space they
weren't really talking.
And so we worked with pullingthat community together and we
(28:02):
brought in the FDA, we broughtin medical ethicists, we brought
in the current transplantregulatory groups and all the
folks that I just mentioned totalk about what a clinical trial
for Zeno really need to looklike, what are the conditions
and what are the requirementsand what are the regulatory
hurdles we need to overcome.
(28:22):
And we put together andpublished a strategy out of that
.
And the scientific part of thatwork then was picked up by the
American Society ofTransplantation and they said
we'll take this on.
This is a great thing.
And so we're now a secondarypartner in the work they're
doing.
But from the patient perspective, we followed up with an event
(28:46):
with the FDA last November andit's called a patient-focused
drug development event and thisis a very common practice with
the FDA to get patients in frontof them to talk about the
situation, talk about theopportunity to talk about what
the patient needs are and, ofcourse, we're a patient
organization so we want thepatient to be the center of
(29:08):
everything and we've definitelywanted to be the center of all
of these exciting things thatare happening in Zeno.
Of course the FDA comes.
You don't know what they'rethinking, but they sit in the
back of the room and they takecopious notes and we ran this
process for a full day.
We had people online, we hadvoting, but it really kind of
gave the FDA a sense of howdifferent kinds of patients that
(29:32):
were on different parts oftheir kidney journey were really
evaluating and thinking aboutthe risk of a new technology
like this and how they weregoing to compare it to waiting
for a deceased donor or waitingfor a living donor or some of
the other ideas that are outthere.
There's a lot of otherinnovations that are out there
that I'll talk about in a second, but we just actually just
published the findings of thatstudy about a month ago.
(29:53):
We've gotten a lot of presspickup on it, but a lot of this
we've been told that a lot ofthe work that we did in this
patient-focused drug developmentthing with the FDA, went a long
way to getting the FDA toapprove the compassionate use
clause, and the compassionateuse clause is how we've had
three Xeno transplantationssince then, and if your
(30:15):
listeners don't know what I meanby Xeno, I should have
explained earlier, sorry.
Xeno is essentially using a pigkidney that's been genetically
grown or genetically modified tolook like a human kidney in the
to the human body.
Speaker 1 (30:31):
And the compassionate use clause is where a patient
has pretty much exhausted allwe'll say modern day medical
procedures and you know, andmedicines and things like that,
and at this point the governmentallows them, as a living person
, to basically donate their bodyto be used for this purpose,
(30:56):
like the most recent one.
You know Dr Montgomery was soexcited, you know performing
that procedure, and you know thewoman walked out of the
hospital with a pig kidney.
So that's not something anyperson who needs a kidney can do
.
You have to be at a certainpoint, sadly, where this
compassionate use clause comesinto effect and a point for it.
Speaker 2 (31:18):
Yeah, it's very common in cancer treatments and
other very serious illnesses.
Now it doesn't mean theclinical trial for Zeno has
started yet, but it does meanwe're getting a lot of
information that's going to helpus inform what that looks like,
and it also means we probablypulled the clinical trial
forward by years by being ableto do these things.
So this is all very exciting tome because of what we've talked
(31:40):
about before.
Speaker 1 (31:41):
The wait list is such a problem but you know I, I
would uh be remiss if I didn'tsay this is not going to happen
in like a year or two or three.
So you know, we have to keepdoing what we're doing until
this, you know, hopefully is theis the answer, which could be,
(32:01):
you know, 15 years down the road, something in innovation.
You know, as a donor, you knowyou said we talked about a few
times that, you know, really,nkf is a patient-centered,
primarily patient-centered.
So my own personal experience,when I first donated, when I
donated I don't first when Idonated my kidney, uh, you know,
(32:23):
I wanted to do more and Iwanted to to be like a mentor
and things like that.
And you guys uh had and stillhave, um, this peer to peer, you
know mentoring group.
But for full disclosure, um, itit wasn't really that great.
Uh, back in the day when Idonated, uh was, you know, I
attempted to join the groupthere was like a it really
(32:46):
wasn't a great communication.
But now you have, you know,these two amazing people who are
running that organization andyou've also partnered with the
National Kidney Registry to, youknow, kind of facilitate the
registration of these donors.
So can you explain a little bitabout that, because the program
now, as it is today, in myopinion, is really, really good,
(33:09):
and it is, you know, I'd liketo see the National Kidney
Foundation, you know, do more onthe living donor front.
It's not that I'm putting youon the spot now, but you know,
can you talk a little bit aboutthe Donor Connect program with a
peer-to-peer mentoring program?
Speaker 2 (33:24):
Oh yeah, I'd love to Thanks for bringing it up and
I'm sorry it was bumpy for youat first, but we have done a lot
of work to make that a moreeffective and effective program,
For sure.
What we do is there's a lot ofpeople that are interested in
being a living donor, thatreally don't have a person in
mind, they just believe this issomething they've heard a good
(33:44):
story about.
They don't know the person, butthey believe I'm healthy, I
have a kidney, I don't, I can, Ican help somebody, I can save a
life.
And they step forward and youknow we refer to them commonly
as altruistic donors ornon-directed donors.
It's kind of the industry term,Right.
What the National KidneyFoundation does is work with.
We have huge traffic on ourwebsite around all things kidney
(34:08):
, but particularly aroundtransplantation, and a lot of
people come to our site throughGoogle search and other ways to
find other ways that we'repromoting to learn about living
donation.
And once they decide they wantto be a living donor, we push
them over to National KidneyRegistry to go through the
formality of registering andit's you know, it's a
(34:29):
questionnaire about familyhistory and once they pass all
of those requirements thatthey're, yes, they could be a
kidney donor, then they have todo some lab work that NCR
recognizes and takes care of andthen once they pass that hurdle
, then they go be referred to atransplant center of their
(34:52):
choice or one that's local.
And one of the things that wenoticed in discussion with NKR
was number one we could drive alot of volume to their site.
And number two, we noticed alot of people would fall out of
the process.
They would fall out during thequestionnaire period or they
would fall out after they'd fillout the questionnaire but they
(35:13):
wouldn't reply to any of thequestions for lab work.
But they did the lab work.
So basically, you've got thishuge funnel and we're looking at
all the failure points in thefunnel and we're trying to
improve the conversion rate, ifyou will, at each one of those,
at each one of those sites.
So we've been very active withNKR and when someone falls out,
(35:34):
NKR lets us know they fell out.
We do personal outreach to thatperson to see if they want to
talk to a person.
We're very anonymous and we'revery thoughtful about this, but
we're a safe place to talk aboutthis and we work with that
person to address their issuesand then we, if they, if we
(35:55):
resolve their issue, they goback in the system.
They fall out again.
We talk to them again, but weessentially counsel them and
become the safe place to helpmove them through that funnel to
ultimately become a livingdonor.
And since we and we track everybit of data around this and so
and so what we've been able todo since the, since we started
this program I guess we startedit formally about two years ago
(36:20):
now and we're we're up to almost200 people that have made it
through this, the, to become aliving, an altruistic living
donor.
The great thing aboutaltruistic living donors is they
start a kidney chain and, ifyou know, kidney change arts,
where multiple people end upgetting a transplant because of
one person coming forward.
Speaker 1 (36:36):
So, prior to joining forces, if you will, or
partnering with the NationalKidney Registry, you did have a
peer-to-peer mentoring programand I'm assuming it did not have
the same results as once youstarted partnering with the
National Kidney Registry,because what they do really well
you know, garrett Hill is thefounder and CEO of the National
(37:00):
Kidney Registry.
What he's figured out is thisintake process is really refined
and because you guys, so youguys have the traffic really
refined and because you guys, soyou guys have the traffic, they
have the intake process andthose two things combined.
And you know you mentioned nowover 200 donors have donated.
So, just so people canunderstand what that means, that
means you know, thousands uponthousands of people have gone to
(37:22):
the National KidneyFoundation's website and the
National Kidney Foundation hasthese mentors we like to call
them or peers and they walk thepeople through the process.
They're there to help them,hold their hand, be like a safe
place.
So one could argue, you know,would those people have donated
if they didn't have a mentor, ifthey didn't go through the
(37:45):
process?
Maybe, but not to that number.
So you know you are making atangible effect on.
You know it's not enough, right?
We need to do more, right?
Because 200 is you have peoplelike what do you mean?
It's not enough.
200's great, but we just saidthat it was over 92,000 people
that need a kidney.
So just one thing, because thiscomes up a lot on you know
(38:09):
message boards and things.
So, as the CEO, you had to makethis decision to partner with
the National Kidney Registry,which is affiliated with
approximately 100 to 103transplant centers, but there's
really 250 or so transplantcenters in the United States.
So how did that you know?
How did that go through yourmind?
Because there are people whoyou know we'll still work with
(38:52):
them.
Speaker 2 (38:52):
We lose the ability to track what happened, though
you know once.
Speaker 1 (38:57):
And that's the key to success, and that tracking is
the key.
Speaker 2 (38:59):
That tracking is the key.
We still do that work and wetrack that separately.
How many people do we talk to?
And we do the best we can to dothe follow-up, but oftentimes
you really need to be scientificabout it.
You need some kind ofconfirmation from the transplant
center.
This thing actually happenedand that's difficult.
But we continue to offer thementoring program to people that
(39:22):
are just considering it,whether they know anybody or
they don't know anybody.
And I think if you know someone,one of your loved ones or
friends or family has come toyou and said I want to be a
donor.
It's a very difficultconversation if you're just
thinking about it or if you'vereally gone out of limit and
said, yes, I'll do it.
Now you want to change yourmind.
Now you have concerns.
(39:42):
We're that safe place where youcan come work on that.
You can talk to one of ourmentors and really work those
things out.
We track all those calls andthose conversations, but it's
really hard to track the outcome.
But we do all that.
So that's the first part ofyour question is how do I think
about it?
It's like wherever we can help,we want to help.
(40:02):
Wherever we can help, we willhelp.
At the same time there's DonateLife America, who has the
registry for all the deceaseddonor they manage that registry,
has been doing a test in thestate of Texas for a similar
living donor registry and wepartnered with them to build the
test and build thequestionnaire and go through
(40:25):
that.
And now they're at a pointwhere they're trying to figure
out where they are with theTexas model and how and when do
they want to roll that outnationally, and so I can't speak
for them, but we're inconversation with them too, so
we're trying to cast a wideenough net to kind of catch all
of the opportunities that we can.
Speaker 1 (40:45):
So before I mean, you know I don't want to keep you
here all day and I'm sure acouple of people might have
fallen asleep, but I want totalk about policy and advocacy.
I know you mentioned a fewthings, but you know the NKF has
absolutely.
You know, you said which I lovethat that you got like coaching
from your people on how to talkto the people in Washington DC.
(41:06):
So you've, guys, have beeninstrumental, for sure, in
shaping public policy for kidneyhealth.
So what are some of thelegislative efforts that you
guys are working on now?
Speaker 2 (41:19):
Well, we're doing two things.
We're working on legislativethings, but we're also working
on a lot of regulatory work aswell.
So we kind of run both sides ofit.
So we kind of run both sides ofit.
But legislation right now, thebill that we were optimistic
about coming through, thiscontinuing resolution of
December it didn't make it true,but was the expansion of NELDAC
(41:41):
.
Neldac is the National LivingDonor Assistance Center, thank
you, and there's so manyacronyms with the government the
government, you know they'dkill you with these things um
but um, you know, we believe fora long time, the amount of
money they have available tothem and the restrictions they
placed on that money were justnot effective at all.
(42:04):
And so we've been, we've beenadvocating, uh, to get expansion
of that and relax and changesome of the standards and some
of the requirements and alsoimprove some of the transparency
, because, quite frankly, it'sbeen difficult to figure out who
got what and was the moneybeing spent well, if at all.
And so we were really pushingfor that bill to happen and for
(42:24):
who.
Didn't make it happen, and FortWorth didn't make it.
So that's going to be.
We're in the process now ofkind of looking at this new
Congress, which just startedlast Friday, and trying to get a
sense of what their objectivesare going to be and what their
priorities are going to be andhow that informs what we do.
But we do believe thisexpansion of NLDAC is something
we're going to prioritize goingforward this year.
Speaker 1 (42:44):
So I'm not a hugely political person and it doesn't
matter what side of the aislethat you're on, but from what I
know, being in the in the kidneyworld, the last time President
Trump had his administration inthere were a lot of forward
movement within the government.
(43:05):
You know when it came to, youknow changing regulations and
you know getting legislationthrough.
So how do you see, I assume,are you optimistic about the new
administration coming in, basedupon you know, what previously
happened when President Trumpwas in office?
Speaker 2 (43:23):
Well, I think I'm going to choose to be optimistic
.
You know, I think we reallydon't know a lot about the new
players just yet.
Right, we do know a lot of thenon-appointee, the career folks
that were instrumental inhelping us advance kidney
disease as a priority in theTrump administration.
(43:44):
A lot of them are still thereand still in place and we've
been in conversations with themand I'm optimistic from what I
hear from them.
And you're right, we weresuccessful in the Trump
administration driving anexecutive order called Advancing
the American Kidney HealthInitiative.
That had a component aroundawareness.
It never got the funding.
(44:04):
All of this got derailedbecause of COVID, right, but it
had an awareness component.
It had components aroundchanging the reimbursement model
for kidney disease.
It had a lot of things that wehelped architect and we were
very proud of.
You know, in the Bidenadministration we were
successful with them too, but ina different way.
The Biden administration andthe Senate Finance Committee,
(44:28):
which is in a very bipartisan,nonpartisan way, really wanted
to look at reforming thetransplant system and we did too
.
So we were able to connect withthem on not only getting the
new bill passed called Securingthe Oregon Procurement
Transplant Network get that billdone, network, get that bill
(44:52):
done, and we were also able toget more funding for that two
years ago, which continued on inthis recent continued
resolution.
So we're optimistic that we'regoing to continue to move
forward with some of the reformsthat we're trying to do.
Around transplant, the Trumpadministration previously was
very focused on the wholecontinuum of kidney care Right
and it was a very broadinitiative.
It got shortened to transplantonly under Biden.
(45:15):
So we're not really sure howit's going to go next.
I think the best argument wehave is that 1% of the Medicare
population spends about 8% ofthe budget.
You know it's $34, $35 billion.
That's with a B right, with a Bwith a kidney failure right and
dealing with kidney failure,and this is not just for old
(45:37):
people, this is for people thatare under 65, that are also part
of this population.
So I think you can not knowanything about kidney disease.
You can not care about kidneydisease at all at a personal
level, but if you care aboutsolvency, the federal budget,
you should care about kidneydisease.
So I think we've got a prettystrong argument, regardless of
who's in power and who's in whatcommittee and what regulatory
(46:00):
body.
So I'm going to be optimisticand believe we're going to get
some.
We're going to continue to havea good track record of getting
things done.
Speaker 1 (46:09):
That's good.
I'm a glass half full kind ofguy myself.
So you know, currently rightnow, sadly to say, I don't have
any listeners right, becausethis episode has not aired yet
but when we do have the tens ofthousands and millions of
listeners, what's the mostimportant action that they can
take to support, you know,kidney health and organ donation
action that they can take tosupport um.
Speaker 2 (46:30):
You know kidney health and organ donation well.
I think at a personal level,the best thing everyone can do
um is really understand ifthey're at risk personally for
kidney disease and we have asite called
minuteforyourkidneysorg or theycan talk to their primary care
physician and say they want tounderstand it.
But if you're a person of color, if you're overweight, if you
(46:52):
have a history of diabetes orhypertension in your family or
history of kidneys in yourfamily, you're pretty much at
high risk and you should have athoughtful conversation, you
should get tested.
I think, also at a personallevel, you should find out.
If you're, you should look andmake sure that you're a
registered organ donor.
Absolutely, I think you can dothose things.
(47:12):
I think, if you're inclined, Ithink you should learn about
being a living donor and come toour site is a good place at
kidneyorg and we can walk youthrough what it means, the
implications, the benefits, thecost, the whole realm, if that's
(47:34):
important to you.
If you really feel a calling foradvocacy, we need more
advocates.
We need more people that aregoing to help us talk to
congressional leaders at thefederal level, but also at the
state level I mean states have abig play in this and a big
stake in kidney health andkidney disease.
If you care about veterans, ifthat's important to you,
(47:56):
veterans are lost.
They're lost in this system.
There are a lot of veteransthat need a kidney, that that
they need a kidney from a livingdonor.
They need support, they need aVA to prioritize their kidney
health, and so there's a lot ofways to advocate, depending on
where you as a person areinterested.
If you want to be an advocatefor us, we have a very formal
(48:18):
program called Kidney AdvocacyCommittee, where we train people
how to speak, how to writeletters to the editor, how to
write letters to governmentofficials, how to present their
issues, and we invest a lot oftime in them.
If that's so inclined for that,reach out to us for that too.
We have a lot of ways to getinvolved.
Speaker 1 (48:36):
So I have done a kidney walk before in Manhattan,
which was awesome, and I knowno one could see me, but I'm
wearing right now the orangescarf that I received last year
when I got selected to go andhelp lobby for, you know, kidney
related health legislation andyou know and initiatives going
(49:08):
to be in March, if I'm notmistaken, is when you're going
to be doing it again and I gotselected again and, just so
people know it is completelyrandom, you know you apply to go
help on that particular day, soI'm going to bring my orange
scarf and maybe I'll get asecond scarf, but it's really
moving.
You know going down to theCapitol and lobbying and having
people here.
You know my story as a donorand you're there with patients
(49:29):
or recipients.
It's really important work.
So, before we close, is there aparticular story over the last
10 years with your work at theNKF that really captured your
heart and kind of encapsulatesthe National Kidney Foundation
and what it can do for people?
Is there one that you couldshare with us?
Speaker 2 (49:50):
Yeah, I think the one that really really struck me
and got me committed to the NCAFwas when I first went to a
kidney walk in New York.
I'd never been to somethinglike that.
I'd never been to a 5K or a 10K, any kind of funerals.
I think I'd been to a gala onetime and I thought it was the
most boring thing.
I'd never been to a 5K or 10K,any kind of funerals.
(50:11):
I think I'd been to a gala onetime and I thought it was the
most boring thing I'd ever done.
And so I really didn'tunderstand this kind of
nonprofit.
You know health care world.
But the local team asked me tocome to a walk and get involved
and I went and I remembercalling a friend of mine saying
I don't, I don't understand whatI'm, what am I supposed to do
with this thing?
And she said, kevin, you don'tknow.
(50:31):
You don't know anybody that'shad kidney failure.
You know you did dialysis fromhome.
You don't know anybody.
You need to meet people.
You're about to go meet thekidney community and you just
don't have any idea what thatmeans.
And I'm like, well, I guessyou're right, but I'll go, and I
just thought it was a lamething.
I wasn't going to do it.
But I went down there and shesaid promise me you're going to
talk to somebody before youleave.
(50:51):
And so I did the whole walk.
It's like two and a half milesand I hadn't talked to anybody.
And I was walking back and Iremembered I promised Holly that
, my friend Holly, that I woulddo this.
And uh, holly Wittenberg, ifyou're listening, thank you.
And I saw this group of a groupthey were always walk group.
They're walking around withsimilar t-shirts on.
They had a picture of somebodyand it said team bill on the
(51:14):
cover.
And I looked around, I lookedat the 20 or so people and I
didn't see anybody named billand and so this woman had kind
of drifted from the group and Isaid who's bill?
And she said, oh, that's myhusband.
He, he's not here, he died twoweeks ago while on the wait list
.
Oh, wow, and I thought that'sit for me.
(51:35):
I, I, you know the guilt, thesurvivor's guilt that comes with
that kind of thing, uh, knowingwhat I knew was just, it was
just more than I could take, andso I just said, okay, I'm in,
I've got to do something for theNational Kidney Foundation, and
that story still kind of stickswith me and motivates me.
But I think beyond that.
I think you know I was at avisiting an organ procurement
(51:58):
organization back in Novemberdown in Dallas a great
organization and I I I got to bepart of an honor walk where the
person was brain dead and thefamily was saying goodbye and we
went to the recovery room andto watch that family go through
(52:21):
the goodbye process and thenturn right around and there's a
huge moment of grief and lookback at all of us and say how,
how lovely it was that theirloved ones organs were going to
save so many lives and thattheir loved one was going to
live on through these otherpeople and knowing that I, I was
(52:42):
a recipient of something likethat.
Those two things are just anamazing bookends for the last.
You know, 15, 16 years withNCALF.
Speaker 1 (52:51):
So I think that's a perfect segue to my last
question before I let you go iswhat legacy do you hope to leave
behind through your work at theNational Kidney Foundation?
Speaker 2 (53:03):
It's a good one, right, it's a good one.
I want us to make a hugedifference in saving lives.
You know, we didn't even havesaving lives in the mission
statement when I came in, andnow it's front and center.
You know, I think we were afraidto say it, but that's what
we're here for and that's whatwe're going to, that's what we
are doing and that's what wewant to do, having that, that
(53:31):
commitment and that statement,um, and then, and then being
able to point to how many peoplethat we've we prevented going
into kidney failure, how manypeople we've gotten off the wait
list, how many people we'vemade healthier while they're on
dialysis.
And if we can kind of reachthese objectives where, you know
, these vision pillars, I callthem where where we eliminate
preventable kidneys not going toto happen in my lifetime, you
know, nor my tenure, anyway, butI think if we can make a big
(53:54):
dent in this 34 millionundiagnosed people, if we can
make a big dent in the number oftransplants we have every year
and really get dialysis to whereit's a temporary treatment, if
we can do that, then we can atleast lay the groundwork in my
tenure for that I'll be happy.
Speaker 1 (54:12):
Well, I think that's a great legacy, and you said
something that resonates with me, because I feel like since the
last now it's, I think, almostsix years since I've been a
donor, people are always afraid,they're afraid of and I'm
talking about the government, uh, institutions like yours,
donors, patients, recipientsthey're always afraid of what
(54:35):
someone might think, and we haveto stop that, because today, uh
, when this podcast airs, 13people will die uh, on that list
waiting, and tomorrow, another13 will die, and a day after
another 13 will die.
So I think we have to stop beingafraid.
I think we have to make somebold moves in the industry, and
(54:59):
I can't thank you enough forbeing my friend.
Of course, I consider you afriend.
Hopefully it's reciprocated.
I do and I really thank you forbeing my first guest on let's
Talk Transplant, and I want towish Kevin Longino a prosperous
(55:20):
2025 and beyond.
I'm so glad that you are theCEO of the National Kidney
Foundation and I hope that wecan have more interactions in
the future and we can both makechanges in this industry.
Speaker 2 (55:33):
You bet, mike.
I really appreciate thepartnership over the years.
I'm really excited you're doingthis podcast.
Let us know how we can help.
We'll definitely put this outon our social media channels and
, if we can help with you, knowfuture guests or come back and
talk about drill down on anyspecific topics in more detail.
(55:54):
Love to anytime.
Speaker 1 (55:56):
Well listen, kevin.
As my wife always says, whenpeople make offers like that,
you better be careful, becauseMichael will come and claim that
.
Speaker 2 (56:02):
Okay.
Speaker 1 (56:03):
Well, I'm in.
Thank you, Kevin, I appreciateit.
Thank you.
Thank you for listening to thisepisode of let's Talk
Transplant.
So, whether you're sipping yourmorning coffee, taking a walk
or commuting like my buddy Dan,remember to like and follow
let's Talk Transplant.
You're about to discover aworld far more intriguing than
(56:23):
you ever imagined.
Welcome to the very first episode of let's Talk
Transplant.
Before I get into announcingwho my guest is for today, I
just want to take a brief momentto thank two very special
people, because without them, Iwould not be on the air right
now.
They are actual donors.
They're both living donors, butthey also donated because they
(00:26):
felt that a podcast like thiswas necessary.
And they heard my previouspodcast when I was over at the
National Kidney Registry andafter I left there they wanted
me to continue and theygraciously have given me the
funding to do six episodes.
So I'm truly grateful.
They know who they are and Ijust wanted to say thank you.
(00:46):
Well, I am super excited tointroduce my very first guest on
the very first episode of let'sTalk Transplant, and his name
is Kevin Longino.
A fellow Italian, he's the CEOof the National Kidney
Foundation, also known as theNKF, the largest, most
comprehensive and longstandingorganization dedicated to the
(01:08):
awareness, prevention andtreatment of kidney disease.
As a kidney transplantrecipient himself, kevin brings
a deeply personal connection toNKF's mission, advocating
tirelessly for the 37 millionAmericans living with kidney
disease and the millions more atrisk living with kidney disease
and the millions more at risk.
Under his leadership, ncaf haschampioned groundbreaking
initiatives, from improvingearly detection and access to
(01:29):
care to advancing policies thatexpand organ donation and
transplantation.
Kevin's unique perspective andrelentless passion have
positioned him as a leadingvoice in improving kidney health
and saving lives.
And Kevin Longino, welcome tolet's Talk Transplant.
How do you feel being the firstguest on this podcast?
Speaker 2 (01:51):
You know, Mike, I am deeply honored to be the first
guest on what I hope to be afantastic, successful podcast
that talks about transplant andtalks about the need for it and
the blessing of it and how itcan immediately start saving
more lives.
Speaker 1 (02:08):
Thank you.
I really couldn't think of abetter person, because we're
going to go into in a fewminutes about what the National
Kidney Foundation is and what itdoes.
But you know, the reach of theNational Kidney Foundation is
just so vast that I, you know, Ithought it was crucial and, of
course, this podcast is notalways going to be about kidneys
.
I'm a kidney donor, your kidneyrecipient but my goal is to
(02:30):
talk about all things transplantand ultimately, what I want to
do is create awareness.
I want to inform people and Ihope that more people receive
transplants.
So, you know, I did mentionthat you are a kidney recipient
and, if you don't mind, I'd lovefor you to share a little bit
about your, your story and andwhat happened and how you found
out about it and how you got thekidney and all that good stuff,
(02:52):
and then we can get into theNational Kidney Foundation.
Speaker 2 (02:54):
Yeah, sure, um, uh, I'm happy to talk about that.
So my story, um, is unique andI'll explain why in a second.
But uh, but I I was.
I found out that I had kidneydisease because I went into my
primary care position with justheadaches that were just
unbearable and they didn't makegoing on for two or three weeks
and and uh, no amount of a leaveand aspirin would really make
(03:17):
them go away.
And so I went to see him and myblood pressure was just off the
charts, it was.
It was I don't remember theexact numbers, but it was high,
160s, high 120s, and I wasactually too young to have
numbers like that.
He went through kind of thenormal things around what's
going on with your diet?
Of course it was bad.
(03:38):
What's going on with the stressin your life?
Of course I had a lot.
I was working in the computerindustry it was the real rock
and roll period of the computerindustry and working, you know,
14, 12, 14 hour days.
And so he almost brushed it offto just bad diet and in stress.
But he turned right as he waswalking out of the room.
(03:58):
He turned back and looked at meand said do you have a history
of kidney disease in your family.
I said, well, matter of fact, Ido.
My grandfather died of kidneyfailure.
And he said when was that?
And I said, well, I think hewas 41 years old, it was 1953.
My mom was a teenager and hesaid well, how old are you?
(04:19):
And I said 39.
He said, oh wow, we need to getyou to a nephrologist.
And so from there I went to anephrologist and had a biopsy,
found out that I had an inherentgenetic kidney disease, called
focal segmentalglomerulosclerosis, or FSGS for
short.
And from there, you know, waswas quite shocked, quite taken
(04:42):
aback, that to me I had justgotten a death sentence.
I was going to die young, justlike my grandfather had died,
and it was pretty startling.
But my nephrologist, when I wentinto his office, there were all
these brochures on the wall andon the counter that talked
about National Kidney Foundation, talked about kidney transplant
(05:05):
doctor, what kidney disease?
Talked about kidney dialysis.
And when I went in and got thediagnosis, the the position kind
of walked me through what mychoices were, what a plan might
look like, and he said yourkidneys are gonna fail.
Probably in six months you'regonna need to go on dialysis if
you do everything I tell you todo, we can probably stretch that
out to a year, but you've gotto get ready.
(05:27):
And he handed me some morebrochures from National Kidney
Foundation and I went home andkind of put them all out on the
kitchen table and tried to kindof get a grip on what was how my
life was drastically about tochange and I realized that the
National Kidney Foundation hadreally mapped out this whole
thing and knew exactly what Ineeded at the time.
(05:49):
Upon reflection, what I realizedlater was that I had never
heard of the National KidneyFoundation, but they had already
heard of me.
They already knew what I neededin that moment to deal with
that diagnosis, to get ready fordialysis, to get ready to be
transplant worthy.
Deal with that diagnosis, toget ready for dialysis, to get
ready to be transplant worthy.
So when I kind of got on theother side of this and
eventually got my transplant, Ibelieved I really owed the
(06:21):
universe, I owed people apayback and I was so grateful
for the National KidneyFoundation I started getting
involved as a volunteer withthem.
Speaker 1 (06:26):
so grateful for the National Kidney Foundation, I
started getting involved as avolunteer with them.
Wow.
So you mentioned, obviously,that you received the transplant
.
How did that come about?
Was it from a deceased donor?
A living donor?
Have you only had one?
Speaker 2 (06:33):
transplant.
I've only had one transplant,so that was well over 20 years
ago.
I was able to postpone dialysisfor about three years and I
kind of hovered above the cutofffor about three years and I got
waitlisted, and formallywaitlisted.
(06:54):
I was never part of theallocation because my kidney
function was hovering around 20,around a GFR of 120, which
we'll probably explain what thatmeans at this podcast or some
future podcast.
I'm 20, which will probablyexplain what that means at this
podcast or some future podcastbut I didn't really make the
threshold to go on theallocation for a long time and
what I found out was that yearslater, when I got involved with
(07:15):
the National Kidney Foundation,was that my physician was
managing me according to theguidelines that published by the
National Kidney Foundation ofhow to postpone and how to
manage kidney disease.
So another NKF blessing indisguise.
But once I was able to, once mykidneys failed to the point
(07:37):
where I needed to go on dialysis, I was properly waitlisted and
it was quite a short journey.
I mean not a lot of people knowthis I wasn't on the waitlist
very long.
I was only on for about threemonths.
Wow, you lived in Texas at thetime.
I lived in Texas.
Yeah, I was in Texas, and thereason I got it so quickly was
(07:59):
not because of anything I did Atthe time.
The algorithm, the matchingalgorithm said that if you had a
perfect match, it was such ararity that that person went to
the top of the wait list andthey didn't, and so that's what
happened to me.
I had a kidney become availablethat was such a perfect match.
This person was a geneticsibling to me and I got the
(08:22):
kidney very quickly.
And so, again, you know therewere 82,000 people in the wait
wait list then.
So to go to the top of thatlist is not is not just one out
of 82 000, but it's even moregenetically rare to be that that
close to someone, um, withoutthem being in the same family so
, if you don't mind me asking ifit's's not too personal um,
(08:44):
have you, did you ever want tomeet the family, or have you, or
is that not something that you,uh desired?
Well, I did write him.
I did write him a letter.
You know, in our system, in thetransplant system, that people
are unaware um, donors andrecipients can communicate with
each other anonymously throughthe OPO.
Donors and recipients cancommunicate with each other
(09:05):
anonymously through the OPO.
Um, but it but it's anonymous,and if you never hear back, you
never hear back, and I neverheard back from the family.
So what do you think about that?
I don't know what to thinkabout that.
I'm so, I'm so mixed about it.
Um, you know, um, I I made apromise to that family that I
would honor it and I would honorthe gift and, and I think
you've done that, I hope I'vedone that I'm still going to do
(09:28):
that.
Sure, I'm still getting upevery day trying to honor that
gift because I recognize howrare it was.
In fact, the whole scenario israre.
You know, kidney disease,kidney failure, is vastly
underdiagnosed.
In this country, 90% of peoplewalking around the U SS with
kidney disease haven't beendiagnosed.
You know that equals about 34million adults.
(09:50):
Most people find out they're inkidney failure by finding out
in the emergency room and it'stoo late.
Their kidneys already failed.
There's nothing they can do.
So the whole scenario, end toend, is is unique and I'm so
grateful for that that I feelcompelled to work at the
(10:11):
National Kidney Foundation as avolunteer and now as staff, to
change this.
Speaker 1 (10:17):
That's what kind of drew me to you for full
disclosure for people who arelistening.
I've known you now for severalyears, since my kidney donation.
We've even had dinner togethera couple of times and I've just
been so moved by your sincerity,your generosity, obviously
(10:39):
passion, and it's very unusual.
You know, the National KidneyFoundation is a very large
nonprofit but it's a very largeinstitution and it was, it's
just so refreshing to see a CEOof that with your type of
temperament and your personality.
So I, you know, I applaud whatyou, what you have done and what
(11:02):
you are going to continue to do.
But that probably is a goodsegue into how the heck did some
you know kidney recipientvolunteer and then become the
CEO of the National KidneyFoundation?
Was there like a lottery or didyou, you know, was it the right
day at the right time?
How did that happen?
Speaker 2 (11:20):
Well, you know I got.
I got involved.
I think it was luck andopportunity.
I got involved locally with theNew York office of the National
Kidney Foundation, just doinglocal volunteer work, you know,
helping out with the walk, whichis a big fundraiser and
community event that NationalKidney Foundation holds around
(11:41):
the country.
I met a lot of interestingpeople and because I did home
dialysis I actually didn't knowa lot of kidney patients until I
started going to these walksand started meeting people.
But because it was in New York,I met a lot of the national
board members for the NationalKidney Foundation who are
volunteers and I kept pressuringthem to get more involved, to
(12:04):
get more active.
I just felt like I had more tooffer.
And the next step, afterhelping out with local
fundraisers, was I got involvedin advocacy and I really wanted,
I really believed there wasmore to be done at an advocacy
level and I've continued that asCEO, but at the time as a
(12:30):
volunteer, I just thought therewas a lot that could be done.
The NCAF was really pushing abill then called the
Immunosuppression Bill.
That's not the formal name ofit, but the idea was really
important and it had to do withimmunosuppression, drugs benefit
from Medicare, and I reallykind of locked around this idea.
(12:51):
I thought it was ludicrous,quite frankly, that this
situation existed.
And the situation was this thatthe government, for a lot of
reasons, is the primary payerfor kidney disease and therefore
, and kidney failure inparticular, and therefore, once
they pay for the transplant, andthey would pay for the
immunosuppression drugs whicheveryone needs after they get a
(13:14):
transplant for about three years, and after three years they
would just stop the benefit.
After three years they wouldjust stop the benefit.
And you had all these peoplethat went through all this to
get a kidney and yet they weresuddenly having to choose
between paying their rent,paying their groceries and
paying for their drugs.
And a lot of people would makeshortcuts because they had to
(13:39):
and suddenly their kidneys wouldgo into kidney failure and
they'd be back on the wait listand they'd be back in dialysis
and it was just so unnecessaryand so we wanted to create a
benefit that would, that wouldextend that throughout their
life, as long as they didn'thave insurance some other way.
And and so I I had the team andin calf, the formal staff teach
(13:59):
me how to make a pitch, you know, to a congressman and I was.
I was also supportive of ourhad an incoming congressman here
in Connecticut named Jim Himes,and I spoke to him about this
bill and and asked him to be aco-sponsor of this bill.
And when I told him thesituation, you know he he's like
(14:21):
everyone he didn't believe itreally existed.
You know that why would we dosomething that ridiculous, you
know.
And and so we I got him to be asponsor of the bill and I kind
of got the bug for advocacy, wow.
So I think I think I've gottena little off track here with
(14:42):
your question, so that's okay.
Speaker 1 (14:44):
So you know.
What you were saying, though,is is you know it resonates,
because it was mind blowing tome that you have these donors
who you know upon death, youknow give this gift of life, and
you have living donors who givethis gift while they're living,
and then the government wascutting off the medication that
(15:04):
enables that gift to last,hopefully, 10, 15, 20 or more
years.
That just doesn't make anysense.
Speaker 2 (15:10):
It didn't.
It didn't, but I got the bugand I was able to get a
co-sponsor quickly fromCongressman Himes, who still
continues to be a fantasticsupporter of NCAF.
But I got the attention of somenational board members, which
is to kind of answer yourquestion how did I get in this
role?
And I was subsequently invitedto be a national board member
(15:34):
and again I kept asking foropportunities to be an active
and proactive volunteer and fromthat I got more projects as
board members, to be the boardsponsor of several internal
projects, got on the executivecommittee and then in March of
2015, the CEO left of NationalKidney Foundation and I was
(15:54):
working for myself as anindependent consultant to start
up tech companies and investorand I raised my hand again and
said I'll be the interim untilwe find someone full time.
So are you still the interim?
I'm still the interim.
I was the interim for about sixmonths and we did a national
search and eventually the boardliked what I had, what I was
(16:18):
doing, and asked me to stickaround.
So that will be 10 years inMarch when all that went down.
So Congratulations, that'sgreat, thank you.
Speaker 1 (16:26):
So you know we talked in pieces about what the
National Kidney Foundation does.
You know you described what itdid for you, but can you, you
know, in a nutshell, kind oftell the people who are
listening what is the NationalKidney Foundation and what's its
mission?
Why does it exist?
Speaker 2 (16:44):
Sure, Well, I think in the intro you did a good job
kind of giving a um, essentiallya border plate.
You know where the largestorganization focused on uh, the
awareness, prevention, uh andtreatment of kidney disease.
I think that's a, you know,that's a fact.
I think that a lot of peopledon't really know what that
means.
So, uh, what what?
I think that's a fact.
I think that a lot of peopledon't really know what that
means.
So what I think what we'retrying to do essentially is
(17:08):
three things we're trying toeliminate preventable kidney
disease and kidney failure inparticular and over 60% of
kidney failure is preventableand if it's diagnosed early, if
it's treated early, we're tryingto get to the point where
there's essentially no wait listanymore and that dialysis is a
(17:28):
temporary treatment, not alifestyle, and that you know
there's a lot of ways to saythat it's, you know, in the wait
list.
But you know, as we all know,as we all should know, there's
about 92,000 people on the waitlist, but there's over half a
million people on dialysis andthere's about 800,000 people in
total that are in later stagekidney failure.
(17:50):
Right.
Speaker 1 (17:52):
So you know you talked about that with your own
situation.
That you're.
You know that's the thing wehave people like.
Well, how could there be somany people on dialysis but
there's only 92,000 plus on thelist?
It's because their number isnot where it needs to be for
them to be listed.
But those people could surelybenefit from a kidney transplant
.
Speaker 2 (18:11):
Absolutely.
A kidney transplant right nowis the best treatment for kidney
failure by far, in everymeasure.
Speaker 1 (18:18):
Right, and I think I interrupted you.
So what was number three inevery?
Speaker 2 (18:22):
measure right and, I think, interrupted.
So what was number three?
You said the three things.
That number three isessentially I alluded to it in
dialysis.
We think dialysis should betemporary, but we also think it
should be a life, a conducive ofa productive lifestyle.
I mean, right now there's highrates of depression, there's
high rates of unemployment,there's high risk of comorbidity
if you're on dialysis.
Right now there are certaincancer diagnosis that are
(18:44):
actually have a better mortalitythan dialysis, and so you know,
we think that paradigm needs tochange.
I hate to use the word paradigm, but that's the best word I
have right now, but that has tochange.
So in a nutshell, we want to.
We want to eliminatepreventable kidney disease,
kidney failure everybody thatwants a kidney should get a
kidney and we want dialysis tobe a productive treatment that's
(19:08):
conducive to a productivelifestyle.
So we have a lot of ways thatwe're trying to affect that and
make that happen.
Speaker 1 (19:13):
So that's a perfect segue into the awareness and
protection segment that I wantedto talk about.
So you know, kidney disease hasbeen labeled as the silent
killer and you know, what do yousee as the biggest challenges
in raising awareness about earlydetection?
Speaker 2 (19:33):
I think there's several.
One is that we did a survey,probably.
One is that we did a surveyprobably 12 years ago now, and
about 70% of the adultpopulation in the US don't know
what kidneys are.
They don't know where they are,they don't know how many they
have and they don't know whatthey do.
In fact they don't even knowthat kidneys and urine are
(19:54):
related.
They don't know that kidneysproduce urine.
So you've got a fundamentalconsumer patient population that
don't know the value of kidneysand how it fits, and much like
they know what cholesterol does.
You know what.
They know what heart does andwhat blood pressure.
They kind of know the basics.
But that's a big burden andit's very, very expensive to
(20:17):
teach the American public.
You know it's hundreds ofmillions of dollars to teach the
American public about basichealth that we don't have,
unfortunately.
Speaker 1 (20:25):
Yeah, so how do we so ?
That's a great point because Italk about that, I've I've
talked about that with living,you know, kidney donation to
really it's good.
It takes money right To put outthe essays and stuff, so so how
do you?
So what do you do about that?
Like you know, all thegovernment people are listening
to this.
We need hundreds of millions ofdollars, right.
Speaker 2 (20:43):
Yeah, yeah, we do.
We are talking to thegovernment about that.
We've had some good discussionsabout how to address that with
CDC.
But of course, you know,funding is a big issue.
It's a federal government rightnow.
It has been for the last eightyears, but I'm hopeful, I remain
positive and hopeful.
Eight years, but I'm hopeful, Iremain positive and hopeful.
(21:04):
I think the second thing we cando is recognize that there is an
underdiagnosis problem.
I mentioned it earlier.
There's estimated 37 millionadults in the United States that
have kidney disease, that haveit, and 90% haven't been
diagnosed.
And we have proven this timeand time again by looking at
data sets from hospital systemsor primary care practices or
(21:30):
even payers looking at payersand we can see from the
electronic medical records thatthe two biomarkers of kidney
disease are present, there's anissue present, and yet there's
no corresponding diagnostic codeand there's no corresponding
treatment.
So we know this at a macrolevel and we know this at kind
of a systems practice level thatthis is just misdiagnosed.
(21:53):
So what we want to do is changethe system.
We want to change the system forhow primary care prioritizes
kidney disease, how theyrecognize it in practice, how
they restructure thereimbursement system for it, and
we've taken several approachesaround that, where primary care
(22:17):
providers, as we may have knownthey're very overworked and so
what we have to do is figure outhow to change their workflow.
So one of the things that we'vedone to address it is we've
created quality measures, andall primary care practices not
all, but for the most part, alarge majority of them compete
(22:40):
based on based on qualitymeasures.
So we've invented qualitymeasures for that.
Particularly for diabetics,people that are dealing with
type one, type two diabetesthere's quality measures that
require that their kidneys belooked at, given that's the
number one reason for kidneyfailure, and we're expanding the
quality measures to includehypertension, which is the
(23:00):
number two reason.
So systems behave on measuresand metrics.
So if you want to change thebehavior, change the metric.
So we're doing other things too, but that's kind of a highlight
of one of the things we'redoing.
Speaker 1 (23:12):
So it's commonly known to myself and probably
other people who are involved intransplant, but there are some
vast health disparities,especially, you know, within the
minority community, people ofcolor, and so how does the NKF,
you know, approach that and whatare you guys doing to help try,
and you know, fix that problem,because it's very clear and
(23:35):
prevalent?
Speaker 2 (23:43):
clear and prevalent, and so I'm glad you brought that
up.
Unfortunately, black Americansare three to four times more
likely to have kidney disease,kidney failure, followed by
Hispanic and followed byindigenous Americans and Asian
to some degree, and a lot ofthis is due to social
determinants of health.
It's due to lack of access tocare, it's due to diet, but it's
(24:08):
also due to, you know, geneticpropensity for kidney failure,
and so what we're trying to doto really address this, if we
think about awareness, is to doground-level, grassroots work in
those communities, and sothat's we're kind of.
You know, we have offices allover the country, and so we're
(24:29):
doing a lot of differentstrategies to really get in
those communities and talk tothose people in a one-on-one
level at the group level aboutwhat their risk is and that they
are at high risk and that theyshould get screened.
We're doing a lot of workaround translation so we can
speak to people in theirlanguage.
We're doing a lot of work insocial media, where we have a
(24:52):
test called Minute for yourKidneys, and you can go to
minuteforyourkidneysorg and gothrough a quiz and it'll tell
you at what level your riskmight be and then, if you are at
high risk.
It'll give you the questionsthat go take to a primary care
physician and say I want to betested and here's why.
And we've had wow, hundreds ofthousands of people that we've
(25:13):
captured their email address andwe are now doing the follow-up
to see what the outcomes were onthat.
But we're also working a lot ofthese system change ideas that I
alluded to earlier when I sayget into the primary care and
change how they operate.
We're really working a lot withfederally qualified healthcare
organizations which are dealingwith communities, poorer
(25:35):
communities.
Family medical centers are kindof the general term, how
they're referred to in thecommunity.
But we're working withfederally qualified health
organizations to really helpthem, give them the right tools
and the right practices and theright education.
We've even developed ongoingaccredited and non-accredited
(25:56):
medical education for communityhealth workers so they can, as
they maintain theircertifications, they learn about
kidneys and they learn abouthow to treat them, they learn
about how to spot the diagnosisand things like that.
So it's a very comprehensivemodel of what we're trying to do
and we actually have it branded.
It's called CKD Intercept andit means chronic kidney disease
intercept, or we're trying tointercept early so we can
(26:19):
postpone or prevent people fromever going to kidney failure in
the first place.
Speaker 1 (26:22):
So do you have some like big whiteboard or map or
something on the wall in youroffice that you can keep track
of the thousands, probably, ofinitiatives that the NKF is
doing?
Because I can barely rememberlike the four or five things
that my wife asked me to do,especially gets home.
Speaker 2 (26:39):
I know I literally do .
I have a 12-foot whiteboard inmy office.
Speaker 1 (26:43):
Look at that, and I haven't even been to your office
.
I was just taking a wild guess,yeah, yeah, I want to talk to
you quickly about someinnovation, because the NKF has
championed lots of innovationfor kidney care, so is there
anything exciting that you guysare working on now that pertains
to advancements?
Speaker 2 (27:02):
Yeah, there's a lot.
There's a lot of things we'reworking on that pertain to
advancement.
Speaker 1 (27:06):
Don't go through all of them because I'm going to
lose all my listeners on thisepisode.
Speaker 2 (27:09):
All right, Well you know cool ones, Thanks.
So I think a really cool oneyou'd like to hear about is the
work we're doing aroundxenotransplantation, and one of
the roles that NCAF can play isa neutral convener.
We can get the medicalcommunity, the regulatory
(27:31):
community, the patient communityand the physician community
together and take oncontroversial topics.
Speaker 1 (27:35):
Like the Switzerland of the kidney community.
Speaker 2 (27:38):
That's our goal, that's what we want to do.
A couple of years ago werecognized that, based on the
inertia that we could see intalking to all the companies and
medical centers that wereinterested in
xenotransplantation, was thatthey had a lot of common
problems but because of thenature of that space they
weren't really talking.
And so we worked with pullingthat community together and we
(28:02):
brought in the FDA, we broughtin medical ethicists, we brought
in the current transplantregulatory groups and all the
folks that I just mentioned totalk about what a clinical trial
for Zeno really need to looklike, what are the conditions
and what are the requirementsand what are the regulatory
hurdles we need to overcome.
(28:22):
And we put together andpublished a strategy out of that
.
And the scientific part of thatwork then was picked up by the
American Society ofTransplantation and they said
we'll take this on.
This is a great thing.
And so we're now a secondarypartner in the work they're
doing.
But from the patient perspective, we followed up with an event
(28:46):
with the FDA last November andit's called a patient-focused
drug development event and thisis a very common practice with
the FDA to get patients in frontof them to talk about the
situation, talk about theopportunity to talk about what
the patient needs are and, ofcourse, we're a patient
organization so we want thepatient to be the center of
(29:08):
everything and we've definitelywanted to be the center of all
of these exciting things thatare happening in Zeno.
Of course the FDA comes.
You don't know what they'rethinking, but they sit in the
back of the room and they takecopious notes and we ran this
process for a full day.
We had people online, we hadvoting, but it really kind of
gave the FDA a sense of howdifferent kinds of patients that
(29:32):
were on different parts oftheir kidney journey were really
evaluating and thinking aboutthe risk of a new technology
like this and how they weregoing to compare it to waiting
for a deceased donor or waitingfor a living donor or some of
the other ideas that are outthere.
There's a lot of otherinnovations that are out there
that I'll talk about in a second, but we just actually just
published the findings of thatstudy about a month ago.
(29:53):
We've gotten a lot of presspickup on it, but a lot of this
we've been told that a lot ofthe work that we did in this
patient-focused drug developmentthing with the FDA, went a long
way to getting the FDA toapprove the compassionate use
clause, and the compassionateuse clause is how we've had
three Xeno transplantationssince then, and if your
(30:15):
listeners don't know what I meanby Xeno, I should have
explained earlier, sorry.
Xeno is essentially using a pigkidney that's been genetically
grown or genetically modified tolook like a human kidney in the
to the human body.
Speaker 1 (30:31):
And the compassionate use clause is where a patient
has pretty much exhausted allwe'll say modern day medical
procedures and you know, andmedicines and things like that,
and at this point the governmentallows them, as a living person
, to basically donate their bodyto be used for this purpose,
(30:56):
like the most recent one.
You know Dr Montgomery was soexcited, you know performing
that procedure, and you know thewoman walked out of the
hospital with a pig kidney.
So that's not something anyperson who needs a kidney can do
.
You have to be at a certainpoint, sadly, where this
compassionate use clause comesinto effect and a point for it.
Speaker 2 (31:18):
Yeah, it's very common in cancer treatments and
other very serious illnesses.
Now it doesn't mean theclinical trial for Zeno has
started yet, but it does meanwe're getting a lot of
information that's going to helpus inform what that looks like,
and it also means we probablypulled the clinical trial
forward by years by being ableto do these things.
So this is all very exciting tome because of what we've talked
(31:40):
about before.
Speaker 1 (31:41):
The wait list is such a problem but you know I, I
would uh be remiss if I didn'tsay this is not going to happen
in like a year or two or three.
So you know, we have to keepdoing what we're doing until
this, you know, hopefully is theis the answer, which could be,
(32:01):
you know, 15 years down the road, something in innovation.
You know, as a donor, you knowyou said we talked about a few
times that, you know, really,nkf is a patient-centered,
primarily patient-centered.
So my own personal experience,when I first donated, when I
donated I don't first when Idonated my kidney, uh, you know,
(32:23):
I wanted to do more and Iwanted to to be like a mentor
and things like that.
And you guys uh had and stillhave, um, this peer to peer, you
know mentoring group.
But for full disclosure, um, itit wasn't really that great.
Uh, back in the day when Idonated, uh was, you know, I
attempted to join the groupthere was like a it really
(32:46):
wasn't a great communication.
But now you have, you know,these two amazing people who are
running that organization andyou've also partnered with the
National Kidney Registry to, youknow, kind of facilitate the
registration of these donors.
So can you explain a little bitabout that, because the program
now, as it is today, in myopinion, is really, really good,
(33:09):
and it is, you know, I'd liketo see the National Kidney
Foundation, you know, do more onthe living donor front.
It's not that I'm putting youon the spot now, but you know,
can you talk a little bit aboutthe Donor Connect program with a
peer-to-peer mentoring program?
Speaker 2 (33:24):
Oh yeah, I'd love to Thanks for bringing it up and
I'm sorry it was bumpy for youat first, but we have done a lot
of work to make that a moreeffective and effective program,
For sure.
What we do is there's a lot ofpeople that are interested in
being a living donor, thatreally don't have a person in
mind, they just believe this issomething they've heard a good
(33:44):
story about.
They don't know the person, butthey believe I'm healthy, I
have a kidney, I don't, I can, Ican help somebody, I can save a
life.
And they step forward and youknow we refer to them commonly
as altruistic donors ornon-directed donors.
It's kind of the industry term,Right.
What the National KidneyFoundation does is work with.
We have huge traffic on ourwebsite around all things kidney
(34:08):
, but particularly aroundtransplantation, and a lot of
people come to our site throughGoogle search and other ways to
find other ways that we'repromoting to learn about living
donation.
And once they decide they wantto be a living donor, we push
them over to National KidneyRegistry to go through the
formality of registering andit's you know, it's a
(34:29):
questionnaire about familyhistory and once they pass all
of those requirements thatthey're, yes, they could be a
kidney donor, then they have todo some lab work that NCR
recognizes and takes care of andthen once they pass that hurdle
, then they go be referred to atransplant center of their
(34:52):
choice or one that's local.
And one of the things that wenoticed in discussion with NKR
was number one we could drive alot of volume to their site.
And number two, we noticed alot of people would fall out of
the process.
They would fall out during thequestionnaire period or they
would fall out after they'd fillout the questionnaire but they
(35:13):
wouldn't reply to any of thequestions for lab work.
But they did the lab work.
So basically, you've got thishuge funnel and we're looking at
all the failure points in thefunnel and we're trying to
improve the conversion rate, ifyou will, at each one of those,
at each one of those sites.
So we've been very active withNKR and when someone falls out,
(35:34):
NKR lets us know they fell out.
We do personal outreach to thatperson to see if they want to
talk to a person.
We're very anonymous and we'revery thoughtful about this, but
we're a safe place to talk aboutthis and we work with that
person to address their issuesand then we, if they, if we
(35:55):
resolve their issue, they goback in the system.
They fall out again.
We talk to them again, but weessentially counsel them and
become the safe place to helpmove them through that funnel to
ultimately become a livingdonor.
And since we and we track everybit of data around this and so
and so what we've been able todo since the, since we started
this program I guess we startedit formally about two years ago
(36:20):
now and we're we're up to almost200 people that have made it
through this, the, to become aliving, an altruistic living
donor.
The great thing aboutaltruistic living donors is they
start a kidney chain and, ifyou know, kidney change arts,
where multiple people end upgetting a transplant because of
one person coming forward.
Speaker 1 (36:36):
So, prior to joining forces, if you will, or
partnering with the NationalKidney Registry, you did have a
peer-to-peer mentoring programand I'm assuming it did not have
the same results as once youstarted partnering with the
National Kidney Registry,because what they do really well
you know, garrett Hill is thefounder and CEO of the National
(37:00):
Kidney Registry.
What he's figured out is thisintake process is really refined
and because you guys, so youguys have the traffic really
refined and because you guys, soyou guys have the traffic, they
have the intake process andthose two things combined.
And you know you mentioned nowover 200 donors have donated.
So, just so people canunderstand what that means, that
means you know, thousands uponthousands of people have gone to
(37:22):
the National KidneyFoundation's website and the
National Kidney Foundation hasthese mentors we like to call
them or peers and they walk thepeople through the process.
They're there to help them,hold their hand, be like a safe
place.
So one could argue, you know,would those people have donated
if they didn't have a mentor, ifthey didn't go through the
(37:45):
process?
Maybe, but not to that number.
So you know you are making atangible effect on.
You know it's not enough, right?
We need to do more, right?
Because 200 is you have peoplelike what do you mean?
It's not enough.
200's great, but we just saidthat it was over 92,000 people
that need a kidney.
So just one thing, because thiscomes up a lot on you know
(38:09):
message boards and things.
So, as the CEO, you had to makethis decision to partner with
the National Kidney Registry,which is affiliated with
approximately 100 to 103transplant centers, but there's
really 250 or so transplantcenters in the United States.
So how did that you know?
How did that go through yourmind?
Because there are people whoyou know we'll still work with
(38:52):
them.
Speaker 2 (38:52):
We lose the ability to track what happened, though
you know once.
Speaker 1 (38:57):
And that's the key to success, and that tracking is
the key.
Speaker 2 (38:59):
That tracking is the key.
We still do that work and wetrack that separately.
How many people do we talk to?
And we do the best we can to dothe follow-up, but oftentimes
you really need to be scientificabout it.
You need some kind ofconfirmation from the transplant
center.
This thing actually happenedand that's difficult.
But we continue to offer thementoring program to people that
(39:22):
are just considering it,whether they know anybody or
they don't know anybody.
And I think if you know someone,one of your loved ones or
friends or family has come toyou and said I want to be a
donor.
It's a very difficultconversation if you're just
thinking about it or if you'vereally gone out of limit and
said, yes, I'll do it.
Now you want to change yourmind.
Now you have concerns.
(39:42):
We're that safe place where youcan come work on that.
You can talk to one of ourmentors and really work those
things out.
We track all those calls andthose conversations, but it's
really hard to track the outcome.
But we do all that.
So that's the first part ofyour question is how do I think
about it?
It's like wherever we can help,we want to help.
(40:02):
Wherever we can help, we willhelp.
At the same time there's DonateLife America, who has the
registry for all the deceaseddonor they manage that registry,
has been doing a test in thestate of Texas for a similar
living donor registry and wepartnered with them to build the
test and build thequestionnaire and go through
(40:25):
that.
And now they're at a pointwhere they're trying to figure
out where they are with theTexas model and how and when do
they want to roll that outnationally, and so I can't speak
for them, but we're inconversation with them too, so
we're trying to cast a wideenough net to kind of catch all
of the opportunities that we can.
Speaker 1 (40:45):
So before I mean, you know I don't want to keep you
here all day and I'm sure acouple of people might have
fallen asleep, but I want totalk about policy and advocacy.
I know you mentioned a fewthings, but you know the NKF has
absolutely.
You know, you said which I lovethat that you got like coaching
from your people on how to talkto the people in Washington DC.
(41:06):
So you've, guys, have beeninstrumental, for sure, in
shaping public policy for kidneyhealth.
So what are some of thelegislative efforts that you
guys are working on now?
Speaker 2 (41:19):
Well, we're doing two things.
We're working on legislativethings, but we're also working
on a lot of regulatory work aswell.
So we kind of run both sides ofit.
So we kind of run both sides ofit.
But legislation right now, thebill that we were optimistic
about coming through, thiscontinuing resolution of
December it didn't make it true,but was the expansion of NELDAC
(41:41):
.
Neldac is the National LivingDonor Assistance Center, thank
you, and there's so manyacronyms with the government the
government, you know they'dkill you with these things um
but um, you know, we believe fora long time, the amount of
money they have available tothem and the restrictions they
placed on that money were justnot effective at all.
(42:04):
And so we've been, we've beenadvocating, uh, to get expansion
of that and relax and changesome of the standards and some
of the requirements and alsoimprove some of the transparency
, because, quite frankly, it'sbeen difficult to figure out who
got what and was the moneybeing spent well, if at all.
And so we were really pushingfor that bill to happen and for
(42:24):
who.
Didn't make it happen, and FortWorth didn't make it.
So that's going to be.
We're in the process now ofkind of looking at this new
Congress, which just startedlast Friday, and trying to get a
sense of what their objectivesare going to be and what their
priorities are going to be andhow that informs what we do.
But we do believe thisexpansion of NLDAC is something
we're going to prioritize goingforward this year.
Speaker 1 (42:44):
So I'm not a hugely political person and it doesn't
matter what side of the aislethat you're on, but from what I
know, being in the in the kidneyworld, the last time President
Trump had his administration inthere were a lot of forward
movement within the government.
(43:05):
You know when it came to, youknow changing regulations and
you know getting legislationthrough.
So how do you see, I assume,are you optimistic about the new
administration coming in, basedupon you know, what previously
happened when President Trumpwas in office?
Speaker 2 (43:23):
Well, I think I'm going to choose to be optimistic
.
You know, I think we reallydon't know a lot about the new
players just yet.
Right, we do know a lot of thenon-appointee, the career folks
that were instrumental inhelping us advance kidney
disease as a priority in theTrump administration.
(43:44):
A lot of them are still thereand still in place and we've
been in conversations with themand I'm optimistic from what I
hear from them.
And you're right, we weresuccessful in the Trump
administration driving anexecutive order called Advancing
the American Kidney HealthInitiative.
That had a component aroundawareness.
It never got the funding.
(44:04):
All of this got derailedbecause of COVID, right, but it
had an awareness component.
It had components aroundchanging the reimbursement model
for kidney disease.
It had a lot of things that wehelped architect and we were
very proud of.
You know, in the Bidenadministration we were
successful with them too, but ina different way.
The Biden administration andthe Senate Finance Committee,
(44:28):
which is in a very bipartisan,nonpartisan way, really wanted
to look at reforming thetransplant system and we did too
.
So we were able to connect withthem on not only getting the
new bill passed called Securingthe Oregon Procurement
Transplant Network get that billdone, network, get that bill
(44:52):
done, and we were also able toget more funding for that two
years ago, which continued on inthis recent continued
resolution.
So we're optimistic that we'regoing to continue to move
forward with some of the reformsthat we're trying to do.
Around transplant, the Trumpadministration previously was
very focused on the wholecontinuum of kidney care Right
and it was a very broadinitiative.
It got shortened to transplantonly under Biden.
(45:15):
So we're not really sure howit's going to go next.
I think the best argument wehave is that 1% of the Medicare
population spends about 8% ofthe budget.
You know it's $34, $35 billion.
That's with a B right, with a Bwith a kidney failure right and
dealing with kidney failure,and this is not just for old
(45:37):
people, this is for people thatare under 65, that are also part
of this population.
So I think you can not knowanything about kidney disease.
You can not care about kidneydisease at all at a personal
level, but if you care aboutsolvency, the federal budget,
you should care about kidneydisease.
So I think we've got a prettystrong argument, regardless of
who's in power and who's in whatcommittee and what regulatory
(46:00):
body.
So I'm going to be optimisticand believe we're going to get
some.
We're going to continue to havea good track record of getting
things done.
Speaker 1 (46:09):
That's good.
I'm a glass half full kind ofguy myself.
So you know, currently rightnow, sadly to say, I don't have
any listeners right, becausethis episode has not aired yet
but when we do have the tens ofthousands and millions of
listeners, what's the mostimportant action that they can
take to support, you know,kidney health and organ donation
action that they can take tosupport um.
Speaker 2 (46:30):
You know kidney health and organ donation well.
I think at a personal level,the best thing everyone can do
um is really understand ifthey're at risk personally for
kidney disease and we have asite called
minuteforyourkidneysorg or theycan talk to their primary care
physician and say they want tounderstand it.
But if you're a person of color, if you're overweight, if you
(46:52):
have a history of diabetes orhypertension in your family or
history of kidneys in yourfamily, you're pretty much at
high risk and you should have athoughtful conversation, you
should get tested.
I think, also at a personallevel, you should find out.
If you're, you should look andmake sure that you're a
registered organ donor.
Absolutely, I think you can dothose things.
(47:12):
I think, if you're inclined, Ithink you should learn about
being a living donor and come toour site is a good place at
kidneyorg and we can walk youthrough what it means, the
implications, the benefits, thecost, the whole realm, if that's
(47:34):
important to you.
If you really feel a calling foradvocacy, we need more
advocates.
We need more people that aregoing to help us talk to
congressional leaders at thefederal level, but also at the
state level I mean states have abig play in this and a big
stake in kidney health andkidney disease.
If you care about veterans, ifthat's important to you,
(47:56):
veterans are lost.
They're lost in this system.
There are a lot of veteransthat need a kidney, that that
they need a kidney from a livingdonor.
They need support, they need aVA to prioritize their kidney
health, and so there's a lot ofways to advocate, depending on
where you as a person areinterested.
If you want to be an advocatefor us, we have a very formal
(48:18):
program called Kidney AdvocacyCommittee, where we train people
how to speak, how to writeletters to the editor, how to
write letters to governmentofficials, how to present their
issues, and we invest a lot oftime in them.
If that's so inclined for that,reach out to us for that too.
We have a lot of ways to getinvolved.
Speaker 1 (48:36):
So I have done a kidney walk before in Manhattan,
which was awesome, and I knowno one could see me, but I'm
wearing right now the orangescarf that I received last year
when I got selected to go andhelp lobby for, you know, kidney
related health legislation andyou know and initiatives going
(49:08):
to be in March, if I'm notmistaken, is when you're going
to be doing it again and I gotselected again and, just so
people know it is completelyrandom, you know you apply to go
help on that particular day, soI'm going to bring my orange
scarf and maybe I'll get asecond scarf, but it's really
moving.
You know going down to theCapitol and lobbying and having
people here.
You know my story as a donorand you're there with patients
(49:29):
or recipients.
It's really important work.
So, before we close, is there aparticular story over the last
10 years with your work at theNKF that really captured your
heart and kind of encapsulatesthe National Kidney Foundation
and what it can do for people?
Is there one that you couldshare with us?
Speaker 2 (49:50):
Yeah, I think the one that really really struck me
and got me committed to the NCAFwas when I first went to a
kidney walk in New York.
I'd never been to somethinglike that.
I'd never been to a 5K or a 10K, any kind of funerals.
I think I'd been to a gala onetime and I thought it was the
most boring thing.
I'd never been to a 5K or 10K,any kind of funerals.
(50:11):
I think I'd been to a gala onetime and I thought it was the
most boring thing I'd ever done.
And so I really didn'tunderstand this kind of
nonprofit.
You know health care world.
But the local team asked me tocome to a walk and get involved
and I went and I remembercalling a friend of mine saying
I don't, I don't understand whatI'm, what am I supposed to do
with this thing?
And she said, kevin, you don'tknow.
(50:31):
You don't know anybody that'shad kidney failure.
You know you did dialysis fromhome.
You don't know anybody.
You need to meet people.
You're about to go meet thekidney community and you just
don't have any idea what thatmeans.
And I'm like, well, I guessyou're right, but I'll go, and I
just thought it was a lamething.
I wasn't going to do it.
But I went down there and shesaid promise me you're going to
talk to somebody before youleave.
(50:51):
And so I did the whole walk.
It's like two and a half milesand I hadn't talked to anybody.
And I was walking back and Iremembered I promised Holly that
, my friend Holly, that I woulddo this.
And uh, holly Wittenberg, ifyou're listening, thank you.
And I saw this group of a groupthey were always walk group.
They're walking around withsimilar t-shirts on.
They had a picture of somebodyand it said team bill on the
(51:14):
cover.
And I looked around, I lookedat the 20 or so people and I
didn't see anybody named billand and so this woman had kind
of drifted from the group and Isaid who's bill?
And she said, oh, that's myhusband.
He, he's not here, he died twoweeks ago while on the wait list
.
Oh, wow, and I thought that'sit for me.
(51:35):
I, I, you know the guilt, thesurvivor's guilt that comes with
that kind of thing, uh, knowingwhat I knew was just, it was
just more than I could take, andso I just said, okay, I'm in,
I've got to do something for theNational Kidney Foundation, and
that story still kind of stickswith me and motivates me.
But I think beyond that.
I think you know I was at avisiting an organ procurement
(51:58):
organization back in Novemberdown in Dallas a great
organization and I I I got to bepart of an honor walk where the
person was brain dead and thefamily was saying goodbye and we
went to the recovery room andto watch that family go through
(52:21):
the goodbye process and thenturn right around and there's a
huge moment of grief and lookback at all of us and say how,
how lovely it was that theirloved ones organs were going to
save so many lives and thattheir loved one was going to
live on through these otherpeople and knowing that I, I was
(52:42):
a recipient of something likethat.
Those two things are just anamazing bookends for the last.
You know, 15, 16 years withNCALF.
Speaker 1 (52:51):
So I think that's a perfect segue to my last
question before I let you go iswhat legacy do you hope to leave
behind through your work at theNational Kidney Foundation?
Speaker 2 (53:03):
It's a good one, right, it's a good one.
I want us to make a hugedifference in saving lives.
You know, we didn't even havesaving lives in the mission
statement when I came in, andnow it's front and center.
You know, I think we were afraidto say it, but that's what
we're here for and that's whatwe're going to, that's what we
are doing and that's what wewant to do, having that, that
(53:31):
commitment and that statement,um, and then, and then being
able to point to how many peoplethat we've we prevented going
into kidney failure, how manypeople we've gotten off the wait
list, how many people we'vemade healthier while they're on
dialysis.
And if we can kind of reachthese objectives where, you know
, these vision pillars, I callthem where where we eliminate
preventable kidneys not going toto happen in my lifetime, you
know, nor my tenure, anyway, butI think if we can make a big
(53:54):
dent in this 34 millionundiagnosed people, if we can
make a big dent in the number oftransplants we have every year
and really get dialysis to whereit's a temporary treatment, if
we can do that, then we can atleast lay the groundwork in my
tenure for that I'll be happy.
Speaker 1 (54:12):
Well, I think that's a great legacy, and you said
something that resonates with me, because I feel like since the
last now it's, I think, almostsix years since I've been a
donor, people are always afraid,they're afraid of and I'm
talking about the government, uh, institutions like yours,
donors, patients, recipientsthey're always afraid of what
(54:35):
someone might think, and we haveto stop that, because today, uh
, when this podcast airs, 13people will die uh, on that list
waiting, and tomorrow, another13 will die, and a day after
another 13 will die.
So I think we have to stop beingafraid.
I think we have to make somebold moves in the industry, and
(54:59):
I can't thank you enough forbeing my friend.
Of course, I consider you afriend.
Hopefully it's reciprocated.
I do and I really thank you forbeing my first guest on let's
Talk Transplant, and I want towish Kevin Longino a prosperous
(55:20):
2025 and beyond.
I'm so glad that you are theCEO of the National Kidney
Foundation and I hope that wecan have more interactions in
the future and we can both makechanges in this industry.
Speaker 2 (55:33):
You bet, mike.
I really appreciate thepartnership over the years.
I'm really excited you're doingthis podcast.
Let us know how we can help.
We'll definitely put this outon our social media channels and
, if we can help with you, knowfuture guests or come back and
talk about drill down on anyspecific topics in more detail.
(55:54):
Love to anytime.
Speaker 1 (55:56):
Well listen, kevin.
As my wife always says, whenpeople make offers like that,
you better be careful, becauseMichael will come and claim that
.
Speaker 2 (56:02):
Okay.
Speaker 1 (56:03):
Well, I'm in.
Thank you, Kevin, I appreciateit.
Thank you.
Thank you for listening to thisepisode of let's Talk
Transplant.
So, whether you're sipping yourmorning coffee, taking a walk
or commuting like my buddy Dan,remember to like and follow
let's Talk Transplant.
You're about to discover aworld far more intriguing than
(56:23):
you ever imagined.
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