Insight Pt. 2: Gift of Life: National Minority Donor Awareness Month

We devote the show to National Minority Donor Awareness Month which is designed to increase organ donor registrations among communities of color, which make up more than half of the people on the transplant waitlist. I speak to Rick Hasz President & CEO, Gift of Life Donor Program, Niels Martin, MD, Associate Professor of Surgery Vice Chair, Diversity Equity & Inclusion, Chief, Section of Surgical Critical Care, Director, Traumatology & Surgical Critical Care Fellowship Programs, Department of Surgery; Perelman School of Medicine University of Pennsylvania and Gift of Life Governing Board Member. I also speak to Earl Jones, Heart Transplant Recipient, Debra White, Donor Family Member and Phillip Davis, who is currently waiting for a Kidney Transplant.
Website: www. Donors1.org Social Media: @Donors1

Episode Transcript

(00:00):
Good morning, and welcome to Insight, a show about empowering our community.
I'm Lorraine Ballard Moral and I amso pleased to be introducing some folks who
are going to tell us about AugustNational Minority Donor Awareness Month. The goal
of this annual observance is to increaseorgan donor registration among communities of color,

(00:20):
which make up more than half ofthe men, women and children on the
transplant wait list. We're going todevote this entire show on the issue of
organ donation. Joining us today isRick has He's president and CEO of the
Gift of Life Program, doctor NielsMartin, who's at the Perlman School of
Medicine at the University of Pennsylvania,where he is, among many things,

(00:42):
Associate Professor of Surgery, Vice Chairof Diversity, Equity and Inclusion. He's
also a Gift of Life governing boardmember. We're also joined by Earl Jones,
he's a heart transplant recipient, Deborahwhitehood donor family member, and Philip
Davis, who is waiting for akidney transplant. So Rick, let's start
with you, as we often do, to tell us what the state of

(01:03):
the state is regarding transplantation and organdonation. Where are we now? Where
do we need to go? Well, Raine, our community is really the
most giving community in the United States. For the fifteenth year in a row,
we've led the country and the numberof organ donors and the number of
transplants we've been able to provide.But unfortunately our work is not done right

(01:26):
now. There are still over onehundred thousand patients waiting for that life saving
transplant nationally, and over five thousandmen, women and children here in the
Delaware Valley are waiting that second chanceat life. It is a crisis that
can be easily remedied if people weremore aware about the importance of organ donation.

(01:47):
Doctor Nils Martin tell us why communitiesof color are disproportionately impacted by the
types of diseases that require an organdonation. There are a lot of diseases
that are very prevalent in the AfricanAmerican community, such as hypertension and diabetes,
that directly lead to things like kidneyfailure. Being able to receive a

(02:10):
kidney is really life transforming. Beingdependent upon dialysis and the support of the
medical system, and then to receivea life changing gift really allows for the
return of a much more healthier lifestyle. It's really important for our community to

(02:31):
be aware of organ donation because,as was said earlier, a large proportion
of those waiting fifty percent of thosewaiting or African Americans on the list,
and yet African Americans do not makeup fifty percent of the population. These
diseases disproportionately affect our community, andit's really important therefore for our community to

(02:53):
be aware of the importance of organdonation. Earl Jones, you are a
heart transplant. At the end,I won't if you can share your story.
When did you find out that youneeded a heart, how long did
it take for you to receive aheart, and what's life like now with
a transplanted heart. Well, Iwas born with a heart defect that somehow

(03:15):
when undetected until I was about twelveyears old, and it was during a
routine physical and in school that theschool nurse heard what she thought was a
heart murmur, and she told myparents about it and they took me over
to Chop Children's Hospital Philadelphia and endedup being a lot more serious than just
a heart murmur. It was acondition called transposition of the Great vessel.

(03:38):
Even with that being said, didn'tneed any kind of medications, no surgeries
or anything of that sort. Solife again was pretty normal for me from
that point, even when after diagnosed, being diagnosed to that condition until I
was around thirty years old, andI guess, you know, over time,
the heart became a weekend and thelarge and large one evening, I

(03:58):
was getting ready, you know,to go light down and go to sleep
at the ready for work the nextmorning. He goes a Sunday evening.
At anytime I went, you know, light down in bed, I would
start coughing, coughing a lot.I couldn't get comfortable, and I thought,
you know, maybe it was justa simple cold or something like that.
So I took a cough drop andI was finally was able to get
comfortable enough to go to sleep.And I got up the next morning and

(04:20):
I said, I went to work, and I said, once I leave
work, I'll go to the er, you know, to find out what's
going on. Again thinking it's justa cold that give me, you know,
some cough medication and seeing me onmy way. But once I got
there, to my surprise, theytold me I was actually in a congestive
heart failure. I spent about aweek in the hospital dealing with that,

(04:42):
and just so happened while I wasin there for that. They had the
hard mind to me, of course, you know at the nursing station,
I'm sitting in my room, sittingthere watching that The Wild World of Sports,
you know, the thriller victory inthe agony of defeating Van We all
of a sudden there's a group ofpeople comes running into the rub like,
you know, are you okay?You know, you know what's going on
with you? I'm like, I'mfired. I mean, they told me

(05:04):
I was in actually an undergoing sufferingfrom a heart rhythm. Yet it turned
out to be a ventricular attacking CARDIhere while I was in hospital, you
know, dealing with the HF,found out about that, and a little
bit down the line, I gota defribullator in planet. So between nineteen
ninety five two thousand and one,my heart was condition was being control with

(05:26):
medication in addition to the tribulator beingin place just in case of emergency.
Only listed for transplant in August oftwo thousand and one over at over at
Honoman. But my doctor told mey'all would be better served to go to
Temple and get the transplant there.But once I went to Temple, I

(05:46):
was admitted to Temple fifth or eighthor two thousand and two was a day
after the Super Bowl. I hadto stay home to wait, and I
watched the Super Bowl. You fallinto the hospital interrupt one second, ear
So, a decision was made thatyou needed to get a heart transplant.
Rest today. How long did ittake for you to receive that heart transplanted?
To jump out abraph? February fifth, or two thousand and two,

(06:11):
received a transplant on Marks thirty ortwo thousand and two. Okay, we'll
get back to you, Earl,but I do want to move on to
Debrah. We're going to go backto you, Earl in just a second.
But Debra, you are a donorfamily member, a very important person
who made a decision that saved livesand made a difference for a lot of
other people. Tell us your story, and she made a decision at a

(06:34):
very young age. My daughter,Melika Rose Roberts, was born in nineteen
ninety three. Malika was born withseveral complications, one being she was born
with just one kidney and that kidneywasn't functioning that at a hundred percent.
So I'm actually a family member ofa person who received the kidney when she

(07:00):
was ten years old, and thatkidney sort of gave us ten glorious years
of fun, pleasured love, allof that we could we could ask for,
So we couldn't think the donor familyenough. Malika was about ten when
she got the transplant and always knewshe wanted to give back. We began

(07:25):
our awareness campaign at that time dueto Malika. She would talk about organ
donations to all the family members.I was in community development, my community
meetings. She led the charge formy family, for our family and increasing

(07:45):
awareness of organ donation because she wasa recipient. Malika did pass away at
the age of nineteen, but beforeshe passed, she got her little job
license and she had on there.She was an organ donor and at the
time that she passed, she wasable to give at least her corneas and

(08:13):
tissue donation. She gave all thatthat she had. Well, I like
that saying it's eitherier to give themto receive, it's harder, very hard
to give than to receive. Wewere happy as can be when we were
receiving that kidney, but when shepassed, because we knew that Malika wanted

(08:35):
to donate her organs, it madeit a lot easier. It was the
hardest time in our life, butthat Belle went off and said she is
an organ donor, she wants todonate, and that made it an easier
for us in the family at thattragic time to say, yes, we

(09:00):
wanted to donate her audience, Yeah, I want to get back into that
in just a moment, because there'sso much to talk about. And you're
making me misty eyed here because that'sit's so moving to know that your daughter,
at a very early age, understoodhow important organ donation was, because
she was able to be a recipientand to share with her family that this

(09:24):
is what she wanted and she wouldshare with other people how important that was.
What a wonderful shining light your daughterwas, and what a contribution she
has made. Let's move on toPhilip. Philip, you are waiting for
a kidney transplant. You are inthe process of getting married. Actually you

(09:46):
got married today literally today, butyou're going to have a bigger ceremony later.
How long have you been waiting fora kidney transplant. Yes, first
and foremost, just want to showlove and gratitude to Melika. I agree
that is such a noble act atsuch a long age, just being an
organ donor, and it is definitely, indeed easier to receive than it is

(10:07):
to give. So I'm very appreciativeof her heroics because that's what they are.
I would be remissed if I didn'tsay that as a person right now
moving for a transplant. To answeryour question, I've been on dialysis.
I got diagnosed with kidney failure onmy thirty fourth birthday, September twenty second,
twenty twenty, so it's almost threeyears on my birthday and I've been

(10:30):
on dialysis and I've been on thetransplant list. Kind of like my little
story real quick. The nutshell,I had been having headaches for some years
and I always just thought that theywere like migraines, things of that nature.
And you know, I had anaroused this back then, and I
would go and you know, Ithought that's what it was, but it
turned out that I wasn't the case. So when I first moved back to

(10:52):
Philly in twenty twenty, I wasan assistant principle at a Mastery high school
and we had kind of went tovirtual learning obviously because of the pandemic,
and so part of my job atthat time was the kind of systems who
weren't maybe the most tech savvy asit pertained to assist in their students virtually

(11:13):
as we went kind of asynchronous withour learning modules. And so the funniest
story ever is the day before mybirthday, I was having this horrendous headache
and like really bad headache, andI was talking to a parent and I
told the parent I would call themtomorrow because my head was just pounding.
That parent ended up saying, hey, mister Davis, if you could do

(11:35):
me in favor and maybe go tothe er and get checked out because I
would have these headaches for years.And to turn out that I had kidney
failure and that parent was the onewho inspired you to get it checked out
and get diagnosed, which is probablya testimony to the great relationship that you
have with parents as the assistant principalat the school that you're at. I'd

(12:00):
like to get back to you injust a second, but Rick, these
stories are just so incredibly moving.We have Earl who received a heart transplant.
Deborah whose daughter was able to receivea kidney transplant but also was able
to donate as well. Philip,who is waiting on that waiting list,

(12:22):
who has his whole life ahead ofhim, is just getting married and it's
going to have a big destination weddingin Jamaica. These stories bring home what
these numbers don't tell us, right, that every number is a person.
Yeah, it's really these stories thatinspire people to say yes to donation.

(12:45):
Right when we sit and we werecounseling families at their worst possible time,
soon after they've been told that theirloved one has died, you know,
our staff then tries to transition intotrying to create a legacy for that family
and paint that picture of these patientswho are waiting, who are so in

(13:07):
desperate need, but doing that ina sensitive and caring way. But to
really have people understand what a powerof saying yes to donation means. It's
more than just helping maybe eight people, right, I mean eight people can
directly benefit from organ donation over seventyfive people from a tissue donation. But

(13:28):
it's not just those direct people thatyou're helping, You're helping their families,
you're helping their friends. It's thatripple effect like when you throw a stone
into the ocean, and that forme, organ donation and transplantation kind of
restores your faith and humanity. It'sreally a precious gift from one person to

(13:48):
a neighbor, right and helping eachother out. It's a beautiful expression of
love that we have for each otherthat I think is so important and why
we need to continue to educate peopleon what donation and transplant means, because
there's a lot of myths and misperceptionsabout it. But in the end,

(14:09):
I think it's one of the greatestacts that we can do while we're here
on this earth. Doctor Martin,Let's talk about some of the myths and
misconceptions that sometimes create a barrier forpeople making that decision to become an organ
donor. Let's talk about those.What are some of the misconceptions that are
out there. I think one ofthe biggest myths that exists is that if

(14:31):
you come into an emergency room andyou're an organ donor on your license,
that somehow you're not going to receivecare because people want your organs that's probably
one of the biggest myths I hear, and that cannot be farther from the
truth. I will tell you,as a trauma surgeon and speaking for really
the entire healthcare industry, no oneat the time I don't even know who

(14:54):
my patients are more or less knowwhether they're an organ donor. That does
not play any roule in the wayin which we care for people. We
absolutely deliver life saving treatments immediately toany and everyone, regardless of whether you're
an organ donor organ or an organdonor. In fact, figuring out whether
you're an organ donor is something thatreally we don't even start to think about

(15:18):
until death is imminent and we wantto perhaps offer that option to the family.
And I will say that this typeof community communication is so important because,
as you can imagine, if youget that phone call about a family
member who has just suffered a devastatinglife ending injury or illness, that's really

(15:41):
a hard time to start thinking aboutorgan donation. You're thinking about the loss
of your loved one. And sohaving this type of discourse where people can
think through this on their own,they can make the independent decision when life
is normal to become an organ donoron your drivers license, have the conversation

(16:02):
with your family so that they knowyour wishes. That's the right time to
have these conversations. It's really toughin the heat at the moment. It's
a challenging decision in that moment.So having this awareness ahead of time is
so important. It saves lives.It really does in every life. These
aren't statistics, These are lives,and it has such a profound impact.

(16:25):
I really cannot agree more that thatmay be the biggest myth out there.
But the minority community, African Americancommunity have a trust factor and you know,
they really do not seek medical attentionuntil they're in dire need. And

(16:47):
these are some of the things thatMalika and I discovered in our trying to
increase awareness, trying to make surepeople feel like they would get medical care
once they go to the hospital.But there is a trust factor that we
need to overcome and people really needto know how is so disproportionate the need

(17:12):
versus the amount of African Americans thatdon't eat. I mean, if they
thought that they needed it, theywould be first in line. But it
comes at a time when the lastthing we want to think about is donating
our organs, which is why againit's so important that your family know your

(17:37):
wishes, because they're the ones that'sgonna make that phone call. My sister
said, oh, Melica's an organdonor, and then we had to contact
get the blight. But that's Imean, we were still saying I could
bides there in the hospital, sowe got an uphill battle forms like this
is important. My sister, she'sa professor at Chestnut Hill College and she

(18:03):
does the College Challenge and they camein second for the second year in a
row. I'm starting with the eighteenand nineteen year olds, you know,
for starters, because you know,maybe even younger than that, they are
the ones that might help us orI think that will help us get the
message across. You both make suchan important point, which is that the

(18:26):
conversation needs to happen before the needarises, and when a family member or
when families and friends had that conversationwith one another and let people know.
I mean, I let all myfamily know that I'm a potential organ donor.
It's on my license, it's inmy living will. Everyone knows.
There's no question about it and sowhen and if that time comes, then

(18:51):
it eases the family. As Deborahyou mentioned as well, at the worst
time in your life, you haveto make a decision, which is a
difficult one, but it's easier knowingthat that is the wish of the person
who has passed away and has toldfolks that they want to be an organ
donor. Earl. I want totalk about your life since your organ transplant

(19:17):
a heart transplant. I don't knowthere's something I think especially resonant about the
heart, because the heart symbolizes somuch. It's not only the organ that
keeps us alive by pumping blood toour brains and our body, but it's
also a symbol of love and ofcompassion. And I wonder, what has

(19:37):
life been like post heart transplant?What are the things that you've been able
to do, The experiences that you'vebeen able to have that you wouldn't have
had had you not gotten it,the things I think they resonate to most
of me in terms of experiences.When I got my transplant, my son

(19:57):
was just about fifteen, my daughterwas just about ten, or she was
actually ten, and here you know, twenty one years later, I've got
to see them go in until adesert and now they are parents. My
son is thirty six, my daughteris thirty one, My daughter has a
son is ten, who is herage? When when when I got my

(20:19):
transplant? And my granddaughter, myson has a daughter who's twelve. Uh.
In addition to that, speaking onthe subject of marriage and love,
be celebrating my one year anniversary onthe twenty fourth of this month. So
I feld a lot of positive experiences. Uh, in terms of where I

(20:41):
was pre transplant physically versus now,it's many much much better and much better.
I mean I have some serious limitations. Uh, just you know,
brushing my hair, you know,pre transplant, what caused me to become
breathless. I mean, I've conversionto do it do nothing now. You

(21:02):
know. I'm up at every daysix thirty in the morning doing exercises on
my own. Nobody's you know,beating pots and pans, waking me up,
making me do this. I knowthe benefits of it in addition to
the physical part of it. Asa mental aspect, If I don't do
it, my day is rotten becauseI'm thinking I should I should have exercised
as I should exercise this morning.Life is grand. I mean I always

(21:25):
tell people there's no one who's havingmore fun than I having ever, And
if that person tells you they are, they're just flat out lying. That's
just that's just my look. Ihave a positive out look. I don't
get you know, two down aboutthings. Take I take things as they
come. Yeah, and just youknow, just go with the flow.
I'm just like Deuceley said, Ilike water. So Philip, let's move

(21:48):
to Philip. You just tied theknot. But you're having the big wedding
coming up as a destination wedding.You have your whole life ahead of you,
and you're waiting for that kidney transplant. What are your thoughts about the
future that you like to live witha kidney Yeah, I mean obviously,

(22:11):
like I was saying when I whenI got diagnosed from my birthday on my
thirty fourth birthday, was a cultureshop. I had never heard of an
aprologist. I knew nothing about that, and here I am three years later.
You know, my wife and Iwe created a kidney foundation. We've
had two kidney walks since our inception. But the most thing I want I

(22:33):
wanted to say really quickly was whenyou're asking that question, is like,
I think back to the people I'vebeen in dialysis with, right, Dealing
with dialysis is a very serious thing, and your quality of life changes when
you when you need an organ.Right, you know, you go from
seemingly a normal life. One day, I'm just helping a parent, you

(22:56):
know, with a secret is learning. The next day, I'm at Chestnut
Hill Hospital finding out that i haverenal failure and chronic kinney disease. Right,
So it is it is a bitof a shocker. But something that
you know, brother Earl just saidthat I agree with is like you gotta
take it for what it is,and you can't be sad because like six
sad people don't get better, right, Like, you have to be positive

(23:18):
and you have to turn it intoa positive. And the way you turn
it into a positive is one educatingyourself, but to educating the people around
you and the people in your community. Because when I go to dialysis,
I see black and brown people.That's who I see. That's who's there.
And I went to Fromcinius and ChestnutHill and I've been to Devita where
I am now on thirty eighth inMarcus Street, in Philly, and so

(23:42):
no matter what clinic I've been apart of, I haven't seen people who
don't look like me. So whatthat lets me know is that we definitely
have a lot more work to dowith organ donation, but we have a
lot to do as far as liketaking our health not only seriously, not
for granted, and understanding that likequality of life is vital and maybe less

(24:07):
than that providal that we have becauseI heard the word trust was used in
our community, and you know,but we have to let providal about like
health in general. I know alot of men, especially men of color,
who don't go to the doctor justfor like a routine annual physical And
it's stuff like that that could havemaybe prevented this that happened to me because

(24:27):
I would get my physical, butI wouldn't but I wasn't getting blood word
necessarily, had I have received thatblood work when it was maybe an Aki
instead of CKD, who knows,maybe I wouldn't be on this call.
But I'm glad I am on thiscall because I can advocate for those who
may not be aware of not onlylike what's going on with their bodies,

(24:48):
but what happens when you're diagnosed withsomething that is a chronic illness, and
how you can navigate. And sothat's what I'm here for, to help
people like navigate and learn, andmore importantly, like if you get that
called this is what your fate is, not being so down, not getting
too low, and not getting toohigh, and understanding that whether you get

(25:10):
a living donation or whether you geta cadaver donor that it will come.
I think that's a wonderful message todescend. And I have to dedicate this
entire show to my late friend jWytt Mondesire, who was the president of
the Philadelphia NAACP. He was ondialysis, he was waiting for a kidney
transplant. He actually was in lineto get one because his fiancee had made

(25:34):
the commitment to be a living donor. Unfortunately, it came too late for
him and he passed away. AndI think about all the things that I
miss about him, and all theincredible things he could have accomplished, the
many things that he did accomplish,and the fact that we don't have an

(25:55):
amazing man, an amazing leader,And you think about all the individuals story
of people that do so much,that are so special that are so loved,
that are either waiting for a transplantor have passed away because they didn't
get it in time. And soRick, I'm going to give you the
last word because as we mark thismonth National Minority Donor Awareness Month, what

(26:25):
is your word to our listeners outthere? What do they need to do
in order to make it clear thatthey are willing to become an organ donor.
Well, there's a couple of easysteps. One is, when you
go to get your driver's license,simply check that box yes that you want
to be a donor. You know, it takes about thirty seconds, but

(26:45):
that thirty seconds can mean the lifetimefor somebody else. To talk to your
family so that they know what youwant to do at the worst possible time,
right, So having those wishes knownand then tell your neighbor, tell
your neighbor's neighbor, because you know, I think, as Philip said,
we really need to have the community. This is a community helping a community.

(27:07):
And we've made some good strides inthe community. We've increased donation in
the black community in the last fiveyears by thirty eight percent, So we
are moving the needle. The educationis getting out there, and we know
that fifty two percent of the waitinglist right now are people of color.
Last year from our Gift of LifeDowners, sixty two percent of the recipients

(27:32):
we're people of color. So weknow that the system is working. But
we just are in a supply anddemand in balance, and we need more
people to say yes and more peopleto register. And I think if we
can do that, we're going tohave Philip a kidney in no time.
And please know that we have areally a dedicated group. We're over three
hundred strong now that are working twentyfour hours a day, seven days a

(27:56):
week to help get you that secondchance at life. So keep up the
faith. You've been a real inspirationfor me on this call. And what
is the website for more information?So our website is www dot donors one
dot org. Well, we hopethat folks out there listening to this interview
will take this to heart, theheart that Earl got, the kidney that

(28:22):
hopefully will have for Philip. Andcongratulations on getting married, Congratulations on the
work that you're doing being a strongblack man in the education field. We
need you and we need you toto live a long and fruitful Life and
Deborah your contribution and your daughter's contributionis just incredible, and thank you for

(28:45):
sharing your story. Doctor Martin,thank you for your information. We know
how important it is for people tounderstand what the misconceptions are and I think
you've really made that very clear.And Rick As always getting the word out
and sharing that with all of usall very important. Rick Haas, who
is president and CEO of the Giftof Life Program. Doctor Niels Martin,

(29:08):
who's at the Perlman School of Medicineat the University of Pennsylvania, where he
is, among many things, AssociateProfessor of Surgery, Vice Chair of Diversity,
Equity and Inclusion. He's also aGift of Life governing board member.
Earl Jones, a heart transplant recipient, Deborah White, a donor family member.
And Philip Davis, who is waitingfor a kidney transplant. Let's see

(29:30):
if we can make sure that Philipdoes get that transplant. Thank you all
for joining us here today. Youcan listen to all of today's interviews by
going to our station website and typingin keyword Community. You can also listen
on the iHeartRadio app keyword Lorraine withone R follow me on Twitter and Instagram
at Lorraine Ballard. I'm Lorraine BallardMorrow and I stand for service to our

(29:52):
community and media that empowers. Whatwill you stand for? You've been listening
to Insight and thank you. You