Empowering Women: Dr. Tamuella Singleton on Bleeding Disorders and Healthcare Equity

Episode Transcript
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Jonathan James (00:04):
Welcome to the Hope Podcast.
My name is Jonathan James andit is my pleasure to be with you
today to talk more about womenwith bleeding disorders on this
episode, and we want to say abig thank you to our episode
sponsor, Genentech, forproviding support to us through
Educational Grant to make thesemoments like this possible.
So today I'm super excited todo a deep dive into really the

(00:27):
history of where all we've camefrom but, more importantly,
truly an expert in the field, DrTamuella Singleton.
It is great to have you with metoday.

Dr. Singelton (00:38):
Thanks, so much for joining for the Hope Podcast
.
Yes, I'm super excited to behere.
Yeah well.

I just absolutely love every moment
that I get to spend with you.
You're just such a hero in myeyes.
Thank you very much.
I know so many people in thecommunity just have so
appreciated, not only from thepatients you've treated we've
heard a lot of that and about somuch great feedback from that
point but also just yourleadership, because you've
provided so much leadership forthe community as a whole.
But maybe somebody's listeningright now and has no idea who,

(01:07):
who you are.
And so tell us a little bitabout where you're from and then
you're kind of you're journeyabout becoming a Hintologist.

First of all I have to start by saying I feel
the same right Like that um justkind of intense respect,
admiration, you know, love forcare for everyone in the
community I feel.
I feel the exact same you knowso it's, it's.
It's nice to to kind of havethat relationship, I think as a

(01:33):
as a physician.
I don't know that I expectedthat it would quite be like that
, but it's, it's.
It's really um, a once in alifetime kind of experience and
journey, so so I'm so grateful.
So with that, well, we aresitting here now in Louisiana,

(01:54):
right and so, born and raised Iam from Louisiana and usually
when I travel, and especiallywhen I start talking and I'm
traveling, I get the head, youknow, turn like where are you
from?
So, what are you, what are youfrom?
So, um, and I usually sayLouisiana and they go yeah, yeah
, yeah.
But I mean originally likewhere are your parents from?
And I would go.
Well, I'm actually fromLouisiana for probably about 300

(02:17):
years, on both sides of myfamily you know, probably about
300 years.
A few people came across on aboat some voluntarily, some
involuntarily.
So yeah, it's a little bit of amix, but I'm originally from
Baton Rouge.
I was born and raised here, myparents too, born and raised

(02:39):
here, and when I grew up inBaton Rouge we didn't have a
hundred thousand people here andI can remember my dad saying
you know how it was going togrow and what some of the plans
were, and I'm like yeah, yeah,yeah, like whatever, yeah, but
it was a much smaller place andI'm the daughter of two
educators.
My father was military ineducation, retired from the Army

(03:01):
and was actually my elementaryschool principal, to get that
together.
So I was at home all of myformulative, very early years,
before school, with mygrandmother who was a teacher,
and my mother was a kindergartenteacher in East Baton Rouge,
parish for 40 plus years.

(03:22):
Wow, parish for 40 plus years.
So lots of education, right,kind of going on and
opportunities to read.
I was told I was reading.
When I was three I went toMcKinley Middle, magnet, baton
Rouge High.
Ultimately graduated fromLehigh School.
I grew up kind of right downthe street Stratford Place,

(03:43):
concord, stratford Place,college Drive, perkins Row area.
Lehigh school I grew up kind ofright down the street stratford
place, concord, stratford placewow um, college drive, perkins
row area, yeah and um, I thinkbeing a physician was always in
there.
When I look back on it.
Um, I was glued to the tv as avery young kid when, when mash
was on yeah I didn't understandwhat they were saying, but I
wanted, wanted to see the ORscenes.

(04:04):
You know, I'm like yeah, I waslike wait, what is what is
happening here?
So you know all of those kindof old movies.
Um, I didn't grow up with anyphysicians, Um, and I certainly
would never have imagined that Iwas going to be a hematologist,
oncologist, that I was going tobe a hematologist, oncologist.

(04:26):
I don't think that I solidifiedyes, I'm going to go to medical
school, but I was very driven,for some reason, to go to Xavier
University in New Orleans.
I was determined and very driven, and I think it was because
this is sort of what I wassupposed to do yeah.
And that place is just amiraculous place For me.

(04:48):
It was a place where it's ahistorical black college but
Catholic.
Oh, wow.
And it was a place where and itwas important to me, ultimately
, where God was present.
Come on, and I had an amazingeducation where my instructors,
they knew who I was, you know,they knew me, yeah, yeah.

(05:09):
So they had expectations.
Yeah, the support there, theway we supported each other and
every school has a personalityand I think Xavier had a very
academic-like personality.
Yeah, at the same time, it wasa very nurturing place and when

(05:29):
my parents dropped me off, theyloved the fact that we didn't
have co-ed dorms, there was novisitation and there was a
curfew and if I broke it theygot a letter.
You know it was very serious.
So, anyway, I said all that tosay I think my steps were kind
of ordered.
Yeah, I love that.

I love that it's destined all the way from the
beginning.
Yep, yep.
You were such a I know you tobe such a science nerd in a
million ways, and so I alwayslove that about you.
But you know, we've talkedabout this before about how you
know you have such a greatpeople connection, which is not
always the case.

(06:07):
Yeah, sometimes the science nerdand the people skills don't go
hand in hand, but how did you atsome point during your journey?
How did you come intohematology specifically?
Because, generally speaking,hematology and oncology both are
very research-oriented and youfind a lot of people that love
to be in labs and you know, notwith people.

(06:27):
So how did that?

I know part kind of happen yeah, well, I think at
my core I'm a bit of a geeknerd.
Yeah, um, love science, yeah,kind of thing.
I think the people loving kindof person and mean that's my
mother.
Yeah, it is 200 my mother yeahum, everyone at the albersons
down the street, they know misschris and terry, everybody the

(06:50):
whole store, like they know.
You know exactly who she is.
She talks to everybody in thewhole store.
I take her to a restaurant wego to par.
Right now she's gonna stop andtry to talk to everybody.
You know, from the time we walkin I'm like, oh, my god, like
come on, like so I think I gotthat from her.
Yeah, but the hematologist thingis a little bit of a long.

(07:11):
It's a little bit of a longstory.
I'll try to abbreviate it foryou.
Um, I knew I wanted to go tomedical school.
Um, especially once I got toXavier that was really I was.
You know, I knew that that wasgoing to happen.
I was a chemistry major.
And I remember I told my, Icalled my dad and I said you
know, I think I've really, trulycommitted that I'm going to go

(07:33):
to med school.
And he says, yeah, you're achemistry major.
You know chemists make greatmoney, tammy.
And I said I didn't tell you Iwanted to be a chemist.
I told you I'm going go tomedical school, which I think he
probably found kind of hard toconceptualize.
You know, his baby girl, youknow, going to med school, but I
was very determined um.

(07:54):
I had an opportunity to go tomany schools across the country
and um decided really honestlyto stay at LSU because it was
very inexpensive.

In-state.
It was in-state.

I had little to no tuition to pay, wow.
But when I tell you, theeducation I got at Louisiana
State University School ofMedicine in New Orleans and
Charity Hospital is, in myopinion, second to none, tried
and true tested.
I was interested in research,though very early on and sort of

(08:33):
long before I really knew aboutthe hematology thing.
So I was attracted to residencyprograms in Miami.
I went for a summer program andI was determined I was going to
train in Miami.
I was like this is like NewOrleans and Charity Hospital
with palm trees, like I lovethis.
This is great.
Their medical center wasphenomenal and so I knew I

(08:53):
wanted to go there.
So I had opportunities as a medstudent to apply for kind of
research programs, researchgrants.
So I did, and in doing that, inreceiving those grants, I
called up the director of thepediatrics program, which I
thought I was really interestedin pediatrics, and he just so
happened to be a hematologistand he was treating.

(09:16):
His area of interest was sicklecell disease at the time, and
so I said, well, hey, his nameis Charles Pegelow.
I said, hey, dr Pegelow saidwell, hey, his name is Charles
Pegelow.
I said, hey, dr Pegelow, thisis cold call.
My name is Tammy Christentaryand I'm a medical student in New
Orleans.
I have a grant.
I would love to have anopportunity to work with you for
the summer.
Is it possible for me to meetyou to come?

(09:38):
Blah, blah, blah.
He said absolutely.
And I spent 12 weeks with himand as a result of that one, I
really started to likehematology and two, my schedule
was altered at LSU kind ofbecause of that.

(10:03):
So I sort of got the lastpickings for something called a
sub internship and as a sub Imost people want to be on the
floor with the younger babies.
Um, the adolescent floor waslast and the peds hematology,
oncology floor.
I was told no one wanted thatand I, she said, um, the lady
who was giving out the rotation,she said, well, no one wants

(10:25):
that.
That's just so sad, thoselittle children suffering in
their cute little ball heads.
And I said that is terrible,you know.
To myself I said why would yousay that?
Right right.
In my head I'm saying this right.
And I said you know what I want?
That one.

Because nobody else does.
I was like I'm not this rightand I said you know what I want
that one because nobody elsedoes.

I was like I'm not afraid to have it and you
think it's horrible, and I thinkit's probably not and I want
that one wow and so I went.
And to make this long storyshort, um, I did not expect to
love it.
I did not expect to fall inlove with it, but I did.
The residents I was with duringthat rotation, they hated it

(11:13):
and I was so excited to be there.
Every time the attending wouldask questions on rounds, I'm
like raise my hand.
I know, I know, I know I cantotally see you doing this and
eventually she would go not you,but I loved everything about it
.
But what I found most inspiringabout it, honestly, were the

(11:36):
patients and the families.
I love the science and howinteresting it was and it was
both hematology and oncology.
It just seemed like in like theopportunities were endless.
It was so interesting from,again, a scientific standpoint,
but the people I mean it wasjust amazing.

(11:58):
And so I was really upset oneday about you know, some pair of
shoes that got messed up andyou know I spent my whole
allowance on the shoes and I gotreally angry and I went to work
that day, went to the hospitalthat day thinking about that and
all I had in my mind I'm in abad mood.
You know, my favorite suedeshoes got so messed up.
I'm so upset about this.

(12:19):
And I walked into a patientroom.
I opened the door Good morningand they turned and looked at me
and it was a mom and a daughterand the child life people.
They were in there painting herbald head green with yellow
polka dots and they looked at meand beamed and just smiled with

(12:47):
this, you know, the mostpleasant welcoming.
Oh, hey, dr Tammy, you know,come on in.
And I looked at them and I went.
I feel small.
I'm so upset right about myshoes and this trivial thing.
And this mom and daughter andthe fight of their lives the

(13:09):
fight of their lives, but yetthey can manage to be positive
and try to give something backto me that morning and I just
said you know what?
this is the space that I want tobe in every day.
I want to be surrounded by thiskind of hope, by this kind of
determination, this kind of love.
I just I want to be in thisspace and from that day to this

(13:31):
one I kind of never looked back.
I wanted to be a pediatrichematologist, oncologist.
I trained at the University ofMiami for PEDS.
I trained at Johns Hopkins andthe National Cancer Institute
for PEDS-HEMOC.
I mean, the doors just kind ofunfolded.
Now the coagulation thinghappened in a similar way.
I was on maternity leave.

(13:52):
I had two children infellowship.
I was probably the pregnantfellow and I don't want to put
my program director on blast,but kind of right.
So he said oh well, you knowyou're going to be on track, you
know you're going to finisheverything on time.
You shouldn't have a problem.
He said you know you have thisfour weeks that you needed to

(14:12):
make up in the COAG lab, but youcan do something else if you
want to.
You don't really have to dothat.
And I was like I said to myselfI don't have to do that.
What do you mean?
that same response that I hadwith the lady right with that
and I'm like you're telling me Idon't have to do that, like
that sounds insane.
Of course I have to do that.
I'm going to do my rotation andI insisted on doing my co-ed

(14:35):
rotation and because of that,again the geek in me comes out
and I had a ball, wow.
So, um, my husband and I talkedabout potentially going home
after fellowship and, um, I said, okay, well, let me call and
see my old attendings at LSU.
I'll call Tulane, I'll callOxner and say, hey, I'm a fellow

(14:58):
at Hopkins, I'm from newOrleans.
Um, I think I'm coming home.
Yeah, so, as I'm training, arethere any needs in the state in
the city?
Like, where are the holes?
Could I possibly focus onsomething here?
Right to serve a purpose?
and bringing it back home yeah,and the first thing all of them

(15:22):
said was COAG.
What Hemostasis, thrombosis,coag?
And I said, how about that?
I said, well, that's not aproblem, because I newly
discovered that I liked it.
So, I tried to do everything Ican to go to the hemophilia
clinic.
Like when I could.
To spend more time in the COAGlab, and one thing led to

(15:45):
another and I can tell you otherstories about Katrina and how,
you know, I met Cindy Lessingerand she took me under her wing,
as I mean from the moment I mether, dr Lessinger.

She's wonderful.

Oh my God, she became, you know, my mentor and
friend and didn't hesitate.
And then, you know, I learnedfrom Karen hesitate.
And then, you know, I learnedfrom karen wolf.
And you know that entire teamand, sue my gosh, like those
guys were amazing.
Yeah and um, all of thepatients that I've had over the
years at tulane, that's whoreally taught me right, all of

(16:23):
the patients, the complicatedpatients, patients coming from
Alabama and Mississippi andLouisiana, and although I was
training Peds, I saw adultpatients and I saw kids.
Now we're talking about womentoday and what I can say is I've
had an opportunity in thatjourney to see the transition

(16:47):
but to also recognize, like,where we got it wrong and how
we're starting to get it right.
And I never talked about womenor girls.
We never thought about a womanor a girl, which seems crazy to
me now.
Now right.

(17:09):
I mean, it wasn't a thought.

Yeah, because traditionally it was always
contemplated.
Even in the literature it wasalways contemplated.

It was predominantly a male disease,
right disease, right but what'sso interesting is um, for those
of us who are scientists, right,we do understand the concept of
lionization.
It is a thing, wow.
So if you have two xchromosomes, right one of them

(17:41):
may not make up for what'sabsent on the other, right right
.

Speaker 5 (17:46):
It's not strong enough in other words, you could
be affected.

Right, exactly, right.
So just because you have an Xchromosome doesn't mean that you
cannot and will not be affectedby the X-linked disorder.
Right, right Again.
These are scientific.

Speaker 2 (18:05):
That seems so obvious now, but these are scientific
concepts that we did not apply.

Interesting.

Right Directly to women and I guess, in all
fairness, as we learn more aboutDNA, yeah, and learn more about
genetics, right, this, itbecame a thing.
But when I think back, we justnever.
It was never a thing.
We never talked about it.
We didn't treat them.

Right.
Well, and I have to say toolike I mean it presents
differently for women as it doesmen, but in essence, the root
cause, or the root problems are,are really still there, like
either way.
And so the fact that we'reunfolding some of this more and
and science is catching up, Idon't know if maybe science, the

(18:53):
science is always there, butit's like we're starting to
realize, oh my gosh, like thereare people out there that could
benefit, and uh, there's a wholelot of things that I want to
unpack in that I feel like wehave a lot to cover there.

Yeah, we have a lot to talk about it.

But one of the things that I think is a driver
too, is understanding.
And it's not just this and I'mlearning a lot in this because I
don't come from a sciencebackground, but, having seen the
crippling effects that Iexperienced as a child, you

(19:26):
generally don't see women havingcrippling effects at five years
old.
There are some that have severehemophilia.
We've met a few in thecommunity but but generally and
they do have crippling effectsearly on but but.
But that doesn't mean that it'snot present.
And I think you know we alwayskind of and I know with a lot of
the patients I talk to, it'slike we always wish we kind of
had one of those like diabetic,you know things that could tell

(19:47):
you what your factor level isall the time.
But you know that doesn't existand so it's kind of this idea of
like, how do we manage that?
And so questions that I don'tthink I've ever thought, or most
of the people that I know havenot thought about.
That we're starting to thinkabout now is can factor levels
change?
Do they go up, Do they go down?
Does that present differently?

(20:08):
For women as it does for men.
You know there's, there's somany.
What's really neat is to see tosee this being embraced both
from and it takes kind of bothright.
I mean, the patients need toask the right questions in some
ways to move the needle along sothat you know those who are
making the decisions also canrespond to those questions.
And then and thensimultaneously, there's this

(20:29):
aspect of okay, you know we'vegot to be educated on both sides
, but it's.
But there's another measure ofit.
It's like okay, well, if, ifthere are problems maybe with
longer than normaladministration cycles I can't
tell you how many women I'vetalked to that it's common for
them to go two weeks and theyjust thought that was their
normal, so just getting educatedto the point and go oh, this

(20:50):
could be connected because yourson or maybe some relative had
hemophilia.
There's a reason why you'regoing two weeks instead of just
eight days or whatever, and so Ijust think that it's almost
like the learnings and theunderstanding has kind of been
there, but we didn't see theforest from the trees For a long

(21:11):
time, would you agree?

with that.
Well, yeah, and let's unpackthat for a minute.

Yeah.

Right and think about that.

Speaker 5 (21:15):
So when you're managing a crisis, yeah Right,
totally different set of ruleswhen you're managing a crisis.

Yeah, your concentration is on the crisis.
That's right, absolutely.
So if a house is burning,you're concentrating of anyone
who's standing around the house.
Right right.

(21:48):
Even if the people around thehouse are also suffering or
maybe even burned.
You're trying to save the livesof the people who are in
imminent danger.
Right, right, right, right,right right.
Right, right right right, right.
So I think that to kind of maybegive all of us a break the

(22:10):
physicians, physician scientists, the community, you know
everyone that for a long time,in hemophilia care in particular
, which is the center ofbleeding disorders right,
because the bleeding was sosevere.
Right, which is the center ofbleeding disorders, right,
because the bleeding was sosevere.
So if we almost have a bullseyeand we're thinking about
bleeding disorders, hemophiliawould have been at the center,

(22:33):
with the number of patients, theseverity of what was happening,
right, and the center of thecrisis, right.
So you focus on the crisis,which is the most severe
patients first, right?
So even though someone who had5% circulating factor VIII or
factor IX may have beensuffering, it may have been pale

(22:55):
in comparison to someone whohad none.
Right right, right right right,that makes sense.
So, with few to little treatmentoptions too, the hustle and the
struggle is real, right,because you're focusing on
managing the crisis, right.

And we had two of those.
It wasn't just the fact that weidentify.
Oh, there's a proteindeficiency.
This is a genetic mutationwe're going to get more protein.
It was the one-two punch, itwas HIV.

Speaker 2 (23:31):
That's right and and honestly I mean, yeah, late 80s,
90s, hiv, but I mean all theway up into what?

1995.
Yeah, hepatitis c is stillpervasive, so so it's almost
like we had a one three punchwhere there was like you're
dealing with multiple crisesthat are happening within a
generation.

That's correct.

That's correct, and so it's all focused on how
do we stop the bleeding?

Pun intended Correct, yeah, it was focusing
on that crisis.
So I think, as therapies haveevolved right as treatment
options for HIV, have evolvedright.
We put the fire out Right, andso when you put the fire out now
you can turn around and startkind of surveying the damage.

Who else is in trouble, yeah?

The relatives that may also be in trouble.
Right.
What happened to the neighbor'shouse?
That didn't quite burn, butthere's still an issue there,
but they don't have electricity.
They don't have electricity.
Right, correct, correct,correct, right.
They don't have water, theydon't have electricity.

In hurricane land.

I have a lot of connections to this analogy yeah
, yeah, right, there's thewindow.
There are no windows.
Right.
Yeah, they can't stay in thehouse, right.
So With the improvement oftherapies and I can certainly

(25:00):
say, as a provider, I certainlyhave more time to reflect on and
to take a look at just speakingof me independently my patients
that have moderate mildhemophilia and other bleeding
disorders Because I spend a lotof time managing people and
families of people living withhemophilia, especially with
inhibitors.
I mean, not only did I have alot of severe patients that were
struggling and we werestruggling to help to manage,
like constant right Trying tomanage that Patients who were

(25:25):
living with inhibitors, it wasdaily, many times during the day
there was a lot of intensitythere.
So once therapy's improved,then you really again kind of
have the time to look around.
And collectively, we had thetime to look around, and
collectively, we had the time tolook around, and, collectively,
we had the time to look around,and collectively, we had the

(25:46):
time to ask additional questionsand to not only look at men
living with factor levels thatare in that moderate to mild
range.
You now also cannot ignore thewomen who fall into that same
category right, right and forevery severe male.

I mean, I know what the statistics are, I think
, macek, just the women who fallinto that same category, right,
right and for every severe male.
I mean, I know what thestatistics are I think Maysak
just put out a note about thistoo that there should be like
50% of you know couldpotentially have the females in
the same bloodline could be,affected, but I mean between mom
, daughter, granddaughter,cousin.
I mean you could easily havethree females for every severe

(26:29):
male, oh, absolutely.
That are surrounding thatperson that just don't even know
.

Absolutely.

And dealing with .
Maybe it's not just extendedmenstruation cycles, but maybe
it's also like having trouble inchildbearing.
Maybe it's having difficultywith joint, you know,
microbleeds, all kinds of things.
We've seen so many women thathad like joint damage at age 35
and you go, oh, you probablyjust have some arthritis why
would you have arthritis at 35?

years old and you're an otherwise healthy
female who doesn't haveautoimmune disease, like well,
why would you have that?
So there's so many things and,thank goodness, right.
The therapies evolved andallowed us to have an
opportunity now to ask thesequestions.
But it's linked to other things, right?
So you brought up childbearingright and childbirth, so all by

(27:20):
itself, that's associated withsignificant morbidity and
mortality.

Right for women right right and so it's shocking
, it still is I look at thenumbers of that, sometimes, like
on the world healthorganization puts out it's
pretty, it's it is unbelievablehow many people still are
impacted by that and it'sactually um, for for women of
color and women of kind ofmarginalized groups from a
socioeconomic status.

yeah, apparently it's gotten much worse.
Actually, believe it or not?
Oh my gosh, but when you havesomething like that, that
already exists is the problem.
Right, right, then women withbleeding disorders would kind of
get lumped in and hidden withinthat group for the larger
medical community where you'relike, yeah, that's a problem.

(28:06):
Yeah.
But within that problem arehiding women who have that
problem because they have ableeding disorder.
Right.
But it has become almost like anaccepted norm and accepted fact
.
Yes, that exists.
In medicine, they would sayanemia is the fifth vital sign,
the vital sign that we reallydon't pay attention to, the

(28:27):
vital sign that we should payattention to because it can have
such a significant impactsystemically.
So when you're anemic, yourheart works over time.
Wow.
So that puts you at risk from acardiovascular standpoint If
you have decreased oxygencarrying capacity.
Well, what is that going to doto your brain?
Right, what is that going to dofor you from a memory

(28:48):
perspective?
Are you going to be able tofunction optimally if you're
walking around chronicallyanemic?
But again, that's one of thosethings that, in medicine, for us
, has been accepted for so manywomen, because, oh, women have
heavy periods and oh yeah, womencan be anemic and oh yeah, just

(29:11):
take iron.
Just take this birth controlpill with iron.

Just, it has been an accepted we just have to
give some extra.
Women have to havehysterectomies because they just
bleed Right.
We just do.
That's just what we have to do.
It's just a part of what we do.
Right.

So again it was kind of lumped into things that
were accepted.
Right.
So even now, with theadvancements it's hard to kind
of tease that out of what hasbecome like an accepted norm In

(29:44):
addition to you know this aboutme, but all the folks listening
probably maybe don't know aboutme.
Know this about me.
I'll just speak my version ofthe truth, even if it doesn't
sound right, girl you got to sayit.
I'll just speak my version ofthe truth.
That's what I love about youyeah, coagulation is not one of
those things in medical schoolthat most people like.

Speaker 5 (30:09):
Yeah, well, probably because of all those people
telling you nobody's gonna likeit first.
I'm sure that has something todo with it.

We gotta go right , we gotta go train these people
that are like managing thefellowship I think that's where
we start most people don't, mostpeople don't like it, like
you're not you're not gonna likethis, yeah, you spend only the
time that you have to spend, youlearn it and you move on.
Yeah, right.
It's a blip on the radar formost doctors.
You know a little somethingabout bleeding, yeah, but you

(30:33):
don't have that intensivetraining.
Even most hematologists,oncologists, do they know about
it?
Sure, did they know enoughabout it to pass the board exam?
Sure, could they treat apatient with it?
Sure, because they're qualifiedto do so.
But they don't necessarily have, like, the experience or the

(30:54):
interest right, right, right orthe repetition.
They're not a part of thatcommunity you know right right,
so it's a little different socoagulation for most doctors is
not something they like, it'snot something they want to do
and again, even my hematcolleagues they would prefer
that you do it.
You know you doing that coagthing Great.

(31:15):
Can you see these patients forme?
Can you handle that for me?
So, because it's something thathas kind of been pushed out and
marginalized.

Even within the practice of medicine, Even
within the medical community.

it becomes a little bit of a problem now when
you have to interface withphysicians for care.

Do they treat and I'm just asking because I
don't know but do you feelsometimes like other physicians
treat you as like a second classcitizen, almost as a physician,
where they're just going well,that's your thing, We'll just
kind of give it to you and we'regoing to move on?
Do you feel that?

It kind of runs the spectrum.
So there are some physiciansespecially like some surgeons,
like when they're doingprocedures who are like oh,
you're the coag doc, you're thehemophilia doc, what do I need
to do and where are you going tobe and are you going to help me
do this?
Are you going to tell me what Ineed to do?
Are you going to take care ofsuch and such Like?

(32:13):
They ask a lot of questions andthey want the participation.
They don't want anything to gowrong.
They're open to whatever youneed to do.
At Tulane we would stand in theOR Most of the time it was the
nurses.
If I was available occasionally, it would be me, right.
But then the other side of thespectrum is I don't need you to

(32:33):
tell me anything.
I know what I'm doing.
I've operated on patients whohave this before.
I've seen this before.
You don't need to tell me howto do this.
So there's a spectrum.
Yeah.
Right, right.
And then there are the peoplewho fall in the middle, and so
there are so many variables andfactors right there we're facing

(32:57):
when we're talking about peoplewho are living with mild to
moderate hemophilia, who stillbleed significantly, who are
living with mild to moderatehemophilia, who still bleed
significantly.
There's a risk of life or limb,depending on the situation, and
those people include women.
They also include, which you'renot even going to touch
necessarily today, people whoare living with other rare
bleeding disorders they're.

(33:18):
They're a part of this right sothere's so many factors and
variables that contribute.
So you threw out a questionearlier about factor levels and
do they change and can theyfluctuate with women?
And the answer is yes, becausein people who actually produce
factor eight or factor nine,that can change with stress or

(33:42):
time or age, because it's whatwe call an acute phase reactant.
So depending on when you'retesting it, depending on where
that person falls, it may behigher one time, lower another
time.
So there is some variability.
Some of them change with age,but will it ever be completely
normal?
Quote unquote normal no, Idon't believe that part.

(34:05):
And then there's that wholequestion of and this is tough
and even for someone, I think,who's very seasoned in terms of
my experience with peoplebleeding disorder patients when
I have a patient and a factorlevel is drawn and is documented

(34:29):
as normal, I absolutelyunderstand why there would be a
challenge for some people.
So even right now there areseveral women I'm thinking about

(34:52):
who I know they have.
They carry the gene.
The factor levels are normal.
What do I do with that?
I don't need to treat them toprevent anything.
If they're not symptomatic, Idon't need to address it.
There may be conditions andtimes, depending on what it is,
that I do have to address it.
We would probably have to havean ongoing plan, like, depending

(35:16):
on what it is.
But I empathize and sympathizewith the provider who doesn't
have the experience to kind ofask those questions and may just
check off the box and say thiswoman's factor levels are normal
, I don't need to do anything.
I, on the other hand, may havea conversation where I'm looking

(35:38):
at, let's say, if there's asurgeon involved and I'm like,
listen, she doesn't have a verystrong history of bleeding, but
there has been some, especiallyfrom a menstrual standpoint, and
her factor levels fall withinthe normal range.
But I don't necessarily wantthat to be a false sense of
security.
So we have to have, I think, acrisis management plan.

Speaker 5 (36:03):
That's good.
Yeah, so we have to have, Ithink, a crisis management plan.

That's good yeah.
But we would have to be sort ofin agreement, like with this
and explaining if you haveunexpected bleeding in addition
to what you would normally do.
Here's plan A, plan B and planC.

And for the patients that are involved.
I think about so many guys thatthey, and for the you know
patients that are involved.
I think about so many guys thatthey've.
You know it again.
Their mom, or maybe it's theirdaughter now may not really see
it the same.
Cause it again.
You're, you're putting thatfire out of the house trying to
all the time, but for the men.
But I think it's important thatwe give the people the language

(36:46):
to even ask the questions,because how does that
conversation even come up?
I mean, I think a lot oftreatment centers now are
starting to look at hey, let'sjust go and do blood work for
the family.
So we understand where some ofthem, but not all are, and a lot
of that's driven, obviously, bypayers and insurance and all
that kind of stuff.
But but I mean, I do think, likeat some point, if the mom, if

(37:06):
the daughter is coming andsaying, hey, the, the, maybe
they don't understand why, butthey're saying, hey, these are
the things that I'm honestlyhaving trouble with.
Or I had a tooth extracted andit just bled and bled and bled
and bled Not just, I think,within our own family context.
Sometimes we can just pushthose things aside and say, oh
yeah, you know, it's probably,it's probably like a little, you

(37:27):
know.
But if we bring that to you, andwe say hey, how do you feel
about then?
Then you know that that I mean,it is really.
That's the impetus that startsthe conversation so that you can
create a crisis plan becauseyou can follow that person, that
child, maybe that mom, maybewhoever for many, they're
probably going to have lots ofmedical things that happen
throughout their life and havingthat plan develop, and so I

(37:50):
think it's imperative that we asa patient population and
community also formulize thisunderstanding like this could be
a thing, and we probably shouldat least just know like uh.
I remember um recently my wifewent to go get some uh blood
work done or whatever and the oras a uh ekg they were doing on
her heart and I said we justneed a baseline to where you're

(38:11):
normal, like, like, just whereyou're regular and not in a
crisis, so that later on in lifewe just can come back and go.
Okay, this is what this is whatit was, and now, five years
later, this is what we know itto be now that's right and I
think.
But that all starts with at somelevel, like if my wife didn't
go to the doctor at all to justget a normal checkup.

(38:31):
That conversation probablywould never have happened and
there would be no baseline tomeasure it against right.
So I think at some level, likewe need as a patient community,
we also need to be asking theright questions, because it's
important that we do get acrisis plan because if you're in
a car accident or somethingelse, that could be the you
can't diagnose it.
I mean you shouldn't be tryingto diagnose in the middle of a

(38:53):
total disaster.
Trauma like that, Right?

So I think you know we could probably take that
back a little bit and, um, youknow, let's say what are the,
what are the, what are thetangible things, right, that can
be helpful, that we can kind ofconcentrate on.
And you know, let's start with,if we're talking to people kind
of within the bleedingdisorders community, right,

(39:15):
someone you love know related toright, has a bleeding disorder.
I'm a mom, I have two sons youknow with with hemophilia.
I'm a mom, I have two sons youknow with hemophilia.
You have to understand that,even if no one has ever asked
you that it is possible that youare at risk from a bleeding

(39:43):
standpoint, you have to firstunderstand that it is absolutely
possible.
So, because it's possible,there are two additional steps
that you need to take, startingoff with yes, it's possible
Recognizing that you probablyshould be tested to determine

(40:05):
where you fall.
But then it can't end there.
You have to recognize thatmaybe, in spite of or no matter
what happened with that test,even if you don't have genetic
testing, do you bleed and whatdoes it mean to bleed?
So there are so many women andjust people in general who don't

(40:27):
understand, like I don't knowwhat that means.
What do?
you mean bleed.
So do you mean when I get upand brush my teeth every day and
you know I'm spitting out bloodthe whole time I'm brushing my
teeth that that's not okay?
Not okay, right?
If I have a nosebleed everymorning before I go to work, you

(40:55):
know?
Or in the middle of work, right?
You mean like, well, that's not, that's not really okay.
Or, you know, when I was 12years old and I started having
periods, I couldn't go to schoolfor a week because I had to
wear pads, tampons and a diaper,or you know, there are so many.
So first, I think we have torecognize that, yes, it's

(41:17):
possible that you could have asignificant bleeding disorder,
and then, too, it's importantthat you understand well what is
bleeding for me as a female.
So not only do providers have tobe educated about that, but the
community, patients, women wehave to understand.
What does it mean to bleed?

(41:39):
The third thing would probablybe the third thing would
probably be, sadly that thereare not always going to be my
colleagues or other providerswho will understand how to help
you.
Sure, it's not that they don'twant to help, it's not that they

(42:01):
are doing something deliberate.
I think it's just so manypeople don't know they don't
know how.
So, first, understanding thatit's possible that you could
have a bleeding disorder.
Second, understanding it'simportant for you to learn or
know, or understand what isbleeding for me For me, right,

(42:25):
you know if I have frequentankle sprains Right.
Right, right, am I really havinga joint that's being injured
and now I'm at risk and I needto pursue that and push that and
then finding someone who canhelp you?
You and I'm going to quote myhusband real quick and say we

(42:48):
were talking about doctors and,um, sometimes, the limitations
that you face as a patient ifthere's something your doctor
doesn't know.
Some of them are smart, some ofus are smart enough to say,
well, you know, I don't knowthat, but I'm going to explore
it and sometimes not, and myhusband said well, so I'm just
at the mercy of that because Idon't know, and that's right.

(43:14):
So this is where I thinkorganizations like yours and
when communities come togetherthat you can talk about what
some of the barriers are, whatsome of the challenges are and
maybe how you could overcomesome of them.
You could address the education.

Language right To think about it, to chew on it
, to say what are thecommonalities we're experiencing
?
I've been amazed the more thatI've learned about you know just
modern medicine in general.
I've really been amazed at howmuch anecdotal you know things
are experienced, things that wego through that are what really

(43:51):
push medicine along.
I think in this modern age wethink, well, everything's known
and you know we justeverything's got a lab and
everything's got a test result,and you know we just go to some
specialists and they tell uswhat to do and then we just
follow those instructions.
But, truly there's so muchthat's still not known.
I mean, I think about what youknow and a lot of it's just

(44:13):
because we're continuing to growand understand.
It's the forest from the treesthing.
Sometimes we were putting thefire out in the house and then
we get to assess okay, wait aminute, this person has a burn
that could lead to an infection,that could lead to really,
really traumatic you knowamputation because they didn't
get it treated properly orwithin time, so it could be
eventually severe to be down theroad, and I feel like that even

(44:34):
within the bleeding spore space.
I've been talking about this alot.
You just brought it to mindwhile you're talking about
defining what a bleed is for you.
You've probably heard me talkabout this, but I talk a lot
about we have leaned so much onthis concept of abr or annual
bleed rate, but if I ask 10severe guys that are, like you
know, live they've lived withfully metastasized bleeds that

(44:58):
are just extreme if I ask 10guys what a bleed is, I'm gonna
get 10 different answers.
Yeah, still Now, some of that isbecause the advancement of
medicine has grown so much andthere's so much good treatment
out there, that's really doing agreat job at managing all that
preventatively.
But at the same time, I hearguys I mean literally it's

(45:18):
surprising to me.
Sometimes we'll be in a roomand there's 30 people in there.
They're all affected and you gookay, describe to me what a
bleed is, and it'll be cricketsfor a little while, cause
everybody's on treatment of somekind, which is wonderful.
That's progress.
It's amazing progress comparedto what it was when I was eight,
nine, 10, 11, well, even 20years old you know, there was a.

(45:39):
there was a different day wherethat was not the case and we all
could tell you I can tell you,I can't walk.
I can't you know whatever, butbut at the same time, like
knowing what that is for you isso critical even now, even for,
even for the extreme end of thespectrum.
But how much more so is thatthe problem in moderate or mild
hemophilia, where men, women,whatever it still could be a

(46:01):
problem in a lot of differentways?
I've said for a long time thatI think in mild hemophilia it's
probably like the Wild Westright now it's the most
dangerous place to be becauseyou could be in a car accident.
We just had an amazing meetingwith a lot of legislators
recently in Washington DC wherewe were meeting with one of our
friends.
That was a patient who had beeninfected.
Her dad passed away from acompletely solvable problem

(46:25):
because he had moderatehemophilia he didn't have factor
with it instead of a wristband.
He actually had a thing in hiswallet and he was in a car
accident, taken to the emergencyroom they call the family and
by the time they went throughhis wallet he had passed away
from a brain bleed.
Yeah, that kind of thing isstill going on every day and
most often cause of death is notlisted as hemophilia.

No.

Cause of death was head trauma.
Brain bleed so even in therecords it's not being truly
unpacked.
Does that ever get down to theschool level where we're?
Training physicians for thenext generation?
Probably not school level wherewe're training physicians for
the next generation?
Probably not.
And and and if we as patientsdon't have, if we're not able to
raise a flag, I always say youknow, there's a fine line

(47:11):
between advocating and beingadversarial.
And sometimes I think a lot ofpeople there, when they don't
feel like they're gettinganswers, they go to the
physician appointment or theclinic visit and they just go in
with their Dukes up and they'relike defensive and all this
stuff.
And I, just as I've gotten toknow you more and so many other
physician friends that we allknow and love, it's like I've
just grown to realize man, youguys are human just as much as

(47:33):
I'm human and I can't go intothis being like I have an
opinion and you're trying to bea gatekeeper.
I got to go into this likewe're a team and how do we work
together?
and let me bring up everythingthat I'm thoughtful of and then
you can just help me pick andchoose which one is better or
worse, we had a situation with afemale that had had a really

(47:56):
borderline factor levelborderline, and it was not a
black and white thing and foundout through ultrasound that
there was joint damage as ateenager and through that
process got diagnosed onpreventative treatment.
Total life change.
I mean total life change.
Gave her her life back and shedidn't even know she was

(48:17):
struggling.
She had soreness every day.
Didn't realize all this stuffwas going on.
And even for my own.
I mean here I am preaching onthe stage and whatever doing my
rah, rah, rah and I had myclinic visit with my physician
recently, at the beginning ofthis year.
We sat down and looked at itand went through the things and
said we can do better.
Let's go to this.

(48:37):
Let's correct to 100%, let'snot just correct to 60, 70%.
I thought I was a totally newperson.
And look, I, I kind of know afew questions to ask.
I'm not the most expert, but Ikind of know a little bit about
what I'm talking about.
And so I.
You would think I would havethought to ask that question but
, I, didn't think to ask thatquestion.
I didn't think to push theenvelope because that wasn't my.

(48:59):
Again it goes.
I love the the house burningdown.
Analogy um, because it wasn'tthe biggest problem in my life.
But, by going through hey,here's the list of challenges
that I'm experiencing and thencollaborating with that as a
team has been.
I know it's been life-changingfor me.
I know it's been life-changingfor many other patients and

(49:19):
sometimes providers aren'talways the most empathetic.
But at the same time I've'vefound at least in hematology
seems to be there's probablymore that have a lot more
empathy than there are maybe andyeah, I had an orthopedic
surgeon one time.
That was like military, like noexpression and and you know it
was like I walked out of therethinking that guy, I'm not going

(49:40):
to see that guy yeah yeah, buthe saved my life, yeah, and I
didn't know that I needed him.
So, sometimes they're the mostyou know, but it seems like a
lot of our treatment centers, atleast a lot of hematologists in
this space, are really, youknow, more empathetic.
But I think we got to give graceto each other and we got to
give grace to level we'relearning, but I think it starts

(50:02):
with language it's, and then itstarts with just investigating
and realize that really, ifwe're experiencing this, the
onus is on us, it's, it's reallyon us to to, to really start to
explore and discover and andprocess with and especially if
you have someone in your family.
You know, I think this, thisphrase, one that is keeps coming
back to mind and I feel likehas been very effective in, in,

(50:29):
in a lot of circles, and that iskeeps coming back to mind and I
feel like has been veryeffective, and in a lot of
circles, and that is bleedingdisorders runs in my family.
I think we should investigatethis and just by saying that all
of a sudden, it seems to unlocka switch whether it's a PCP or
whatever.
Whatever that is OBGYN like,whatever that is.
I have a history of this in myfamily.
I think I need to look intothis yeah and that has been a
great way to sort of unlockconversations and see an
investigation.

Yeah, it's just so complex, right?
Because at the end of the daytoo, it's about feeling
confident in a space.
Yeah.
And it's also about having arelationship with someone, and
so a lot of those things aremuch easier for us who have a

(51:10):
relationship with a providerLike you, of communicate, you
know, with that provider, and ifyou're also fortunate enough to
have a provider who isinquisitive enough or

(51:34):
knowledgeable enough orconfident enough to or a science
nerd enough, or a science nerdenough.
Or a science nerd enough, yeah,yeah, to really push the
envelope and ask the additionalquestions.
Yeah, um that can be, that canbe tough to kind of, you know,

(51:55):
put together, and it's alsoanother piece to this too, like
if you're not getting theanswers, you're not getting to
the solutions.
Don't stop.
That's good.
Don't stop.
Go back to that provider again.
Right, you know, give them theopportunity.
Hey, listen, I'm reallyconcerned about this, and is the

(52:24):
workup that we've done herelike really enough?
Can you help me to reallyexplore and find out, like, is
it, is it really enough becausesomething's not right?
mm-hmm and can I follow up, youknow, in a shorter time frame
because something isn't rightnow.

(52:45):
That's easy to say, the way Isaid it, when I don't have a
crisis going on.
And so even recently for me, mydaughter was in a car accident
and inside I was almostscreaming at these people that

(53:09):
no, under these circumstances,you need to do a CT.
I was almost screaming but I waswith it enough to control
myself and not let the insidescreaming come to the outside,
because then people match energyand it becomes about like my
behavior and we can't have aconversation.

(53:30):
So I tried to as calmly aspossible and swallowed real hard
right and said so there's,there was a significant car
accident.
The car is decimated.

(53:51):
Here's a picture of the car.
She can't tell me all theairbags deployed.
She can't really even tell meexactly what happened.

Speaker 4 (54:17):
You can't really even tell me exactly what happened.
Under what conditions would youwant to look?

at someone's brain when there's been that
kind of trauma.
If something happened and itwasn't witnessed, you know, or
if the person who was engaged inthe accident again can't really
tell you anything, under whatconditions would you investigate
?
So do you think that this wouldcall for like a CT to be done?
I had to very try to, verycalmly, you know, pull that

(54:43):
together and ultimately theanswer was yes.
But had the answer been no, myresponse would have been I don't
really feel comfortable withthat.
Can we discuss this a littlefurther, and is there anything
that you can do to kind of, youknow, to really explore that?

yeah, I don't feel, I don't feel comfortable
with that I want to peel thatback a little further too,
because I think there's a deeperthing here that it's crazy,
unfortunate and it's a completereality that insurance,
unfortunately, I had a bad weekwith insurance.

Yeah, I had a bad week with insurance.
Sorry, I had a bad week withinsurance.
I don't mean to create PTSD oranything.
My trauma triggers, I'm sorry,I don't mean to trigger.

Yeah, but we got to also understand that
sometimes the barriers to doingmore investigation in moments
like that, whether it's traumaor whether it's, you know,
whatever, labs, whatever thatthere's a barrier in the sense
that and again I'm asking causeI don't.
I haven't sat in your shoes orin your seat.
So I don't know, but I'm justcurious.

(55:54):
Like when somebody asks you aquestion, are you going through
the checklist in the back ofyour mind, like basically to
answer the question can I, isinsurance going to even allow me
to do these tests?
Because at some level it's notjust about what the patient
wants.
At some level it's like wecould want all the things in the
world.
We could even be right about it.

(56:16):
And our suspicions could beabsolutely accurate.
But if you can't get it funded,if you can't get it paid for,
then none of us really have a.

you know, I call it the silent provider in the
room.

Yeah.

Right paid for, then none of us really have a.
You know, I call it the silentprovider in the room.
Yeah, right and so yeah there'sa silent provider, yeah, right
in the room, and for the mostpart, I'm.
Most of us are pretty wellversed with what our limitations
are in terms of like insurance,like what can?
we do, what can we not do?
Right, um, I know what I can doin an emergency.
I know what I need to describeadequately.

(56:47):
Right, if a patient hassomething, I, over the years, I
know how to make sure that I'mexplaining myself so that they
have enough information.
Right, right, that they need toauthorize, right, right, the
test.
To authorize the test.

(57:09):
Sometimes, even with me goingthrough all of those steps, is
still not authorized.
And then it requires me to havewhat's called a peer-to-peer,
and now I'm having aconversation.
Those things are barriers right.
Some doctors don't get to dothem.
Sometimes they're very hard toset up.
The barriers are just there.

So is that part of the checklist you're going
through when somebody brings toyou like, hey, I think I need?

a chromogenic test.

It can be, and I'm a female and I don't have
like a confident history, but Ireally believe.

Yeah, no, it can be, but it becomes.
For me it becomes a part of theconversation.
Right no-transcript, thisgenetic testing.

(58:15):
So then, what do we do, right,I?
I have a choice.
Either you're going to pay forit at, you know, a thousand
dollars a pop, $2,000 a pop, orI'm going to say we can't afford
to get that.
I'm going to explain why, butit's going to be a conversation
and shared decision makingbetween me and the patient.
Now that's me.
Again that's with my level,experience and the kind of

(58:39):
provider I am.
You may not have the sameconversation right with another
provider.

Right.
But I found, sometimes likefrom the patient seat, sometimes
like just going and saying,like that surface level answer,
if you feel like that's what youdid with your daughter's
accident, just asking morequestions is a great way to sort
of get, maybe to take them outof the instant no or the instant

(59:03):
yes, probably not going to get.

And you're not challenging them, you're not
putting the person on thedefense.
I love.

What you said is that, like, when you give a
certain energy, they're going tomatch that.

They're going to match that.
People match energy, I matchenergy.
Yeah, people match energy.

But by asking questions and staying
inquisitive and saying but, ifthis were the but, if this was
your daughter, what would you?
And you saw these symptoms.
Would there be anything else?
That we should be considering.
I mean, I've gotten to thepoint now where I like asking
this.
This has worked well for merecently.
It's just not maybe in thisexact setting, but in a lot of

(59:39):
settings you're going okay.
Is there any other questions?
I didn't bring up that I shouldbe asking.
Because sometimes I found, Imean, you know, some of these
people are really, I mean, waysmarter than I am.
And, and it's like when I askedthat question, it gets there,
you know their lab brain go onand they go well.
I wish you'd asked me thisquestion you know or?

(01:00:00):
Whatever, they start thinkingof it and they start feeding you
the very questions you can ask.
So getting them to the point oflike let's collaborate, can be
a little bit of a skillsometimes.

Dr. Singelton (01:00:09):
but it is so critical.
Right, it is critical, butagain, it's one of those
barriers when you're not theperson who knows how to do that.
I'll give you another kind ofpersonal example.
My mom is older.
She fell, she broke her wrist.
It was not witnessed.
Right.
She has dementia.

(01:00:30):
She fell.
It was not witnessed.
Okay.
We don't know what wasassociated with the fall.
We don't know if she was havinga heart or cardiac event that
made her fall.
We don't know if she trippedLike we did't witnessed right,
right, all we have.
We're just looking at anelderly woman who has two broken
wrists as a result of a fall.

(01:00:51):
So she's at the hospital withmy brother.
My brother's an educated guy.
The doctors did whatever theydid and they came and said well,
your mom has two broken wrists,we're gonna do such and such
and such and such, and you know,blah, blah, blah, blah, blah.
I hear your instructions.
And what does my brother say?
He goes, okay, and what are wesupposed to do?

(01:01:11):
And okay, and blah, blah, blah.
And okay, and you're going todischarge us, and okay, two
seconds later I roll up.
Right, I'm coming in hot fromNew.
Orleans.
I roll up and I go what'shappening?
Well, they're about todischarge mom.
Ok, and what did they do?
Well, they did some x-rays andand they said she has two broken

(01:01:35):
wrists.
And I said and that's all theydid was some x-rays.
And they said yeah, and I saidOK, so the nurse comes and I
said I didn't introduce myselfas a doctor, I tried to.
You know, again, I'm not calminside, but I tried to remain
calm and I said well, sir,you're her nurse.
He said yes, and I said she'sbeing discharged.
I said well, I do have somequestions for the physician

(01:01:56):
who's caring for her.
So if you could let him know,we'll wait when he has time, but
I don't think that she shouldbe discharged right now and I
have some additional questions.
So can you just please pointout to him, just in case it
wasn't pointed out when he's onhis way over or her way over,
that this is an 80 year oldfemale With end stage dementia

(01:02:20):
who had a fall that was notwitnessed, and we'll wait.
And so when he went back to,maybe they didn't necessarily
have right All of those factslike maybe you know it's busy in
the ER, just an 80 year old whofell and they didn't really get
to the bottom of blah, blah,blah like whatever it was.

(01:02:41):
But when I said I'm sorry, wedo have some additional
questions and here's someadditional facts all of a sudden
she had an ekg, a chest x-ray,a head ct, because those were
the appropriate things, right,right to do.
But there's nothing wrong withmy brother he just didn't know.

(01:03:05):
He just didn't know to askthose types of questions.
And so that's where I thinkwe're getting to the sort of
meat of this, for women andgirls with bleeding disorders.
It's not one answer.
Are you expected to always haveall the answers for yourself?

(01:03:26):
Absolutely not.
But it does help if we couldtry to empower the community
with even what you are capableof doing.
So, even if it's only to startby saying I have a family
history of a bleeding disorder,and so that means that I might

(01:03:47):
have one too, and I don't reallyknow what it means to bleed,
let's just even even if we'restarting there right.
The other complexities ofknowing how to talk to a
provider or knowing whatprovider to go to.
Well, maybe that's when, again,amazing organizations like

(01:04:09):
yours and feeding back into thecommunity and providing support
and providing education, you canhelp to uplift people you know
who face all of those barriersbecause there's so many barriers
right so.

Jonathan James (01:04:23):
I think it's we're in a wonderful position.
It's just giving giving us aunified language to be able to
say like, okay, let's, let'sthink out just knowing what
questions to ask can beeverything.
It's not about you know, beingcombative or or trying to say
that you, you know everything asa patient, but it's, it is

(01:04:46):
about just continuing theconversation through.

you know you can track more bees with honey than
by vinegar, but sometimes youare met with some combative
energy.
That's true.
Like you are.
Right.
And that's not always fairRight.
And it's not always right.
Yeah.
But you can't stop when thathappens.
That's true.
Like if, even if you, when youfeel very strongly and you're
concerned that something isgoing on, if you need to leave
one emergency room and go toanother one.
Get a second opinion, get athird opinion, get a fourth

(01:05:10):
opinion, if you need to youabsolutely need to, or even if
it's, I don't really feelcomfortable with this.
I don't mean to challenge you,I really don't, but can we talk
about this collectively?
Is there anyone else here thatwe can have a conversation?

yeah, just bring in de-escalating right, like is
it.

But again, I I'm, I may have the skills to do
that.
You know, deep down inside I'mlike, no, go get your supervisor
, you know.
No, I'm like, no, you're gonnaget like, but I'm not Better get
all New Orleans on them?

Yeah?

yeah, you're going to get your supervisor
baby.
I'm suppressing that person,but that's not easy for you know
what I mean.
For everyone, for everyone todo, and Lord have mercy.
Don't add in the otherpreconceived notions about
sometimes what people look likeor how they're dressed or how

(01:06:07):
they talk, or anything else whenyou start adding in all those
other factors there can beissues.
There are many things to fight.
I think we have to take themsort of one at a time.
We need new diagnosis codes.
We need new ways to identifybleeding in women.
We need more providers whounderstand how to manage women

(01:06:28):
and girls.
Yes.
We need more evidence-basedthings to go to, so we need more
.

Women in trials.

Yes, we need more women in trials, we need more
research.
We need things like ATHEN.
I'm now the chief scienceofficer for ATHEN.
Yeah.
We need people in the communityto understand you like Athens.
Who?
What is Athens?
You need to understand whatAthens?
Yeah, is that what is?
that the American Thrombosis andHemostasis Network.
You need to understand byparticipating in that, how

(01:06:58):
you're contributing to thecommunity and then ask questions
.
What's happening with this dataLike?
Is there anything that's reallygoing towards women?
Ask your doctor are youparticipating in research for
women?
Yes, you know like what can wedo?
So there are so many boxes thatwe need to check off and we
have to start somewhere.

That's so good Right.
We have to start somewhere Iknow that there's been.
You know you bring up Athensand I just recently, you know,
was able to sit in on the MESACmeeting which was so.

I'm so glad you had that chance.
And I have to say thank you toyou, for really pushing.

You've told me about coming numerous times and
I've just always been like well,I got this, or that or this or
that.
It's information is power, ohmy gosh, I was just mind blown,
you know.
And for all the advancementthat we do in all of society,
right, there's.
I know there has been a lot offingers sometimes pointed at
MESAC at times and, and and andI you know I've been one of them

(01:07:56):
.
At times I've kind of beenfrustrated with the lack of
product.
But after participating andseeing and being involved in
that I for a minute, I justrealized like oh my gosh.
The time there's a methodicalthe thought Genuine.

That's right Intricate process that's going
through that.

And in order to be thorough, there is a longer
timeline.
Yes, and then you just got toput it out there and then see
how it interacts with the otherproviders and the treatment and
all the other things going on,and so then you got to wait for
that response.
It may be three, four or fiveyears before that gets revisited
in in another thorough fashion.
So you know, anyway, I justwanted to say I just you know.

(01:08:37):
Thank you for inviting me tothat but also thank you for for
investing in it, cause you'vebeen a part of that for a long
time.
But I guess one of the thingsthat's really exciting because
at that meeting in particularwas voted on this new document
286, which is specificrecommendations for the
management of inherited bleedingdisorders for girls and women

(01:08:58):
with personal and family historyof bleeding.

That's right.

It's a really lot of words there, but there's
really no other way to shortenthat, because it really is
important.

You have to be inclusive, right?
You want to make sure you hitall the buttons.

But that document, if I understand it
correctly, I don't think it goesas far as saying these are the
new protocols, but I do thinkit's a recommendation to say,
hey, we've evaluated this with agreat deal of thorough measure
and this is kind of theconclusion that we came up with
the best minds in the business,if you will, and this is what we

(01:09:30):
kind of came to as a conclusion.
And it was interesting.
For the first time I felt likeI really heard what we've all
been kind of discovering in thepatient community as well as
what some treatment centers andproviders have also embraced
through the years.
There seemed to be thisresonance within this document.
That said, yeah, I actually hadrecently a conversation with

(01:09:54):
the CDC on this, about thediscrepancy between NIH, saying
that it's anybody 40% or lower.

Oh yeah, 40 and 50%, yeah and then the 50% from
CDC.

And I'm hopeful that in the next few years we're
in conversations, hearing a lotof things but, I'm hopeful that
NIH you know we'll go thatnumber will kind of get washed
out of the system because Ithink there is there's a lot of
reinforcement behind this 50%number.
But at the end of the day,arguably I heard a physician say

(01:10:27):
this one time one of our mutualfriends it's a hematologist in
another area said arguably, ifyou have anything less than 100%
, first of all the range is notzero to 100, the range is zero
to really like what 270 orsomething like that.
So it's this idea that there's apretty broad range of that has
been observed in society, andand so the question is like but

(01:10:47):
if you're less than a hundredpercent, there may be moments in
your life where you couldbenefit from some supplement,
and that doesn't mean if youhave 99% or 90%, whatever, but
the bottom line is anythinglower than a hundred percent.

Let me throw something in there that kind of
justifies that too, right?
So let's say for me um, I don't, I don't have or carry a gene
for hemophilia in your heart inmy heart.
I carry all of it in my heart.
Yeah, not in my genes, but inmy heart yeah yeah.
So because I don't have that.

(01:11:20):
If my factor level right now,if you test it, and it's 87%,
but when my body is stressed andI need to have more factor
eight or factor nine available,my factor level might be 187%,

(01:11:42):
but a woman who carries the genefor hemophilia may not have the
ability to do that or generatethat.
So there's a dynamic here,right.
There's something that could bedifferent about that.
There's something that could bedifferent about that.
So these are some of the thingswhen the Medical and Scientific
Advisory Council for theNational Bleeding Disorders
Foundation I almost said NHLFor- NBDO, formerly known as

(01:12:07):
it's like Prince, yeah, likeformerly known have available to
us.

(01:12:28):
We're talking about thephysiology right of a condition
what happens with your body likethe changes and what may or may
not happen of a condition.
What happens with your body,like the changes and what may or
may not happen if you have ableeding disorder or a family
history of a bleeding disorder.
So we understand it's notnecessarily just about the
factor level that you're lookingat.
It's about everything thatsurrounds that right.

(01:12:50):
So there's a lot that goes intothat.

Yeah, there's a lot still not known, like how do
hormones interact with that?
How does enzymes interact withthat?
How does there's a?
There's a plethora of otherthings that we still are, like
iron deficiency, all of thesethings there are.
So many.

there are so many things, but what I think you
and you pointing out the MACE-EDguidelines right and these
recommendations is so importanteven that it's there for women.

It's a baseline.

It's a baseline.

Right.

It's there and the thing about guidelines and
recommendations, so that reallyprovides a place that, if you
really don't know or don'tunderstand, in addition to the
literature, this is a placewhere you can start to sort of
try to understand.
Well, what are the people inthe general community kind of

(01:13:39):
recommending and what's done?
The references are there.
You can go back and use thosereferences.

Even for insurance approvals.

Now the danger To sort of substantiate right the
argument we can use it forinsurance approval, and so
there's some power in that thatwe really have to take seriously
.

Right right.

Right.

And what I love about this particular document
which, again, I just I have tosay I felt like.

I felt like Well, you got to see how the sausage
was made.
Yeah, and it was.

It was just, it was beautiful the parts of it
that also were.
I think that I I just got morecontext of why there's
frustration sometimes, becauseit's like it's just a long
process.
This is how the sausage runs it.
It doesn't happen overnight.
And and and and, but for thesake of it being thorough and
accurate and intentional.

(01:14:30):
There's a need for this, butone of the things I really did
appreciate that I felt like Iheard the voice of the community
and in unlike maybe some ofwhat the past thoughts have been
on this, is this last sentencehere says I'm just going to read
it because there's no other wayto say it abnormal bleeding
symptoms may occur with normalfactor levels in up to 70
percent of genetic carriers ofhemophilia.

(01:15:05):
so one of the challenges I thinkwe've heard a lot of is is that
, like there's this you talkabout diagnosis codes I think
still most women, the codeitself is going to say
symptomatic carrier, even thoughwe okay, the predominant line
of thinking now is if you have a30% level, you have hemophilia.
Like there's not, it's notreally, but the diagnosis code,
if I'm not mistaken correct meif I'm wrong here but I think it

(01:15:28):
still is going to read on thatMIB report as symptomatic
carrier because it's a femalewhich so we need another code
for that, we need anotherdiagnosis.
But the but the bottom line is,is that the fact that there has
been observed and that in thisdocument to say if there's as a
baseline, as a, as a way to sortof a starting point, this

(01:15:48):
document 286 really saidsomething that I thought was
really interesting.
It says it spoke to the factthat it's not just about above
or below 50%.
It's not a hard line.
You've got to look at thesymptoms and, by the way, this
could occur in normal levels.
I interpret that to mean which,again novice at this but I feel
like what I'm hearing in thatis that normal factor levels

(01:16:11):
would be above 50%.
So if you have a 60% or a 70%,that there's some percentage of
time that they will havepotential bleeding symptoms,
even if they're over 50%.

Absolutely.
And that goes back to theexplanation that I kind of gave
you earlier, right, who carriesthe gene?
You know that causes, you know,factor eight deficiency or
factor nine deficiency, thatwoman, even if that factor level
is measured at 65%, may not beable to mount the appropriate

(01:16:47):
physiological response.
So again, it goes beyond justchecking off the box right for
the factor level.
That is what masac is saying,right?
Masac is saying yes, that thisis something that can occur.
We know that it occurs, we'reaware of the fact that it occurs

(01:17:07):
.
And just because you have anormal factor level does not
necessarily mean that that womanis protected.
And that also goes back to theexample that I gave earlier.
What do I do when I have awoman who I know carries the
gene that causes hemophilia A orhemophilia B and the factor
levels are normal and there's abig surgery that's planned?

That's so good and so necessary.
It goes back to beyond crisismanagement.
It's also about you know.
It's one thing that I wanted tomention here, though, that I
think is worth touching onbriefly is, you know, we seem to
be and again I have my pulse onlike what's happening within
the patient population acrossthe country, right across the

(01:18:01):
country, right, but what we seemto be seeing is more and more
women getting the diagnosis butnot getting treatment.
I guess what I wanted to ask youis do you feel like in the
future and I mean I know there'stensions right now, and a lot
of it, I believe, has to do withand I want you to speak to this
because I may be seeing itwrong, but I feel like what I'm
observing is there's tensions ontwo places.

(01:18:22):
One is many of the treatmentcenters are at capacity and they
just logistically can't bringin another hundred patients.
That's one aspect of it isinsurance is pushing back a lot,
and it's it's there's so manyproblems right now within the
insurance space in the us ingeneral, from afps to pbms to

(01:18:43):
you know all all the thingsthere's like a million problems
going on in that space.
So so maybe those have more todo with this than it is just
just the science.
I mean, I think we'd like tolean on and just say, just okay,
the science is here, and thenMasek says it, therefore it
should be so and whatever.
But there's still a lot ofother things we need to problems

(01:19:04):
to be solved.
But I guess the question is isdo you see a future for the
community where more women maybe on a once a month or maybe a
twice a month?
preventative treatment wherethey're having extended periods
Definitely.

Yeah, I mean, I'm already doing that.

I know, but you're a one-eyed unicorn under
a rainbow right.

Yeah, so that's one of those things.
You know what I mean, yeah.

Do you think that that will become eventually
the predominant line ofthinking within?

treaters across the country.
I think eventually it will bedominant line of thinking within
treaters across the country.
I think eventually it will be.
I think that, again, just realtalk right.
Just you know, being reallyhonest, I think that it probably
should almost be theexpectation that, even if you

(01:19:55):
jump over all the other hurdles,as a woman you understand that
you could have a bleedingdisorder, you understand what
the bleeding is, you understandthat you need to be treated.
But then, connecting with aprovider who has both the

(01:20:16):
experience but then connectingwith a provider who has both the
experience and theunderstanding of what happens,
like with women.
That is where the challenge maybe.
That's the real truth right now.
That may be the challenge.

Yeah, I mean case in point for me.
I have four kids, two of themare girls.

Speaker 4 (01:20:44):
They went through a period of time where both of
them did not really haveextended menstrual cycles.

other symptoms they were playing sports had
problems and retrospectively welook back at those years and go,
oh my gosh, like.
In some ways it's devastating,because you realize it was right
in front of my face the wholetime.
I wish I would have spoken up.
I wish I would have saidsomething.

But remember.
You have to remember, though wewere all in the same boat, I
know.

I know Right, the house was on fire.
We gotta give ourselves grace.
They gotta give us grace.

We've got to give ourselves grace.
They've got to give us grace.

The house is on fire, right, but nonetheless you
want to talk.
Why is this?
Conversation so important for.
Jonathan, that's a driver forme, right?
I?
don't want to see anybody elsego through unnecessary suffering
because of a lack ofunderstanding.
So, that's what drives me.
But in that I alsosimultaneously saw that there

(01:21:36):
was a place where, even when wedid ask questions, the
predominant line of thinking waslike, well, do they have
extended minstrel asylum?
No, well, then they're probablyokay.
I mean like no investigation,and I'm not pointing fingers at
anybody.
Again, like you said, we wereall in the same boat, boat.

(01:22:00):
But, but I, I do think that I,at least I hope that enough
progress has been made andobservations have been made that
not only will that start toinvest, let's just, you know, I
was just with a geneticist,actually from Tulane, not
hemophilia related.
We were part of the raredisease advisory council for the
state legislature here and uh,I was talking with Hans and he
said you, know, I love him.

Oh, he's amazing Love him.

But he said specifically he said which,
again, I'm just quoting him inthis, I don't I haven't read it
myself, which I'm sure he's.
I trust everything he says, soI would trust this too is that
is that genetic testing is nowon formulary for every insurance
provider across the board,which is great news.
So maybe there's a day comingthat we can get to that where

(01:22:40):
it's just like you know whatyou're in the family, we're just
going to test everybody seewhere everybody is, and if you
have the chromogenic or thedispensation towards this
genetic mutation, then we knowthe markers are there.
Therefore the levels almostbecome matter of fact.
I think levels have been kindof a primary form of looking at

(01:23:01):
it.
Now I do think phenotyping andunderstanding that there could
be a positioning for that, justbecause of the gene mutation
actually could be the way thatwe're looking at that in the
future and maybe that's justdone.
It's just automatic, hopefully.

I mean, I don't know.
We have this dream project withAthens and I know there are a
lot of treaters who are veryinterested in this too that
every female born with a familyhistory of hemophilia, of course
, when we know there'sspontaneous mutation.
So not discounting for that,but every female with a family
history that just as a male istested at birth that the female

(01:23:40):
will also have a cord bloodsample scent and a genetic
sample scent.
Amazing, would that not?

what that's like our dream.

That's like our dream project, our dream project
is, yeah, every female right,and we want to collect that data
right and follow those females,kind of over time follow factor
levels.
You know who wants people, hey,bleed logs.
But we need, like you know, ableed log to kind of track like
what's happening.
What if we could even followjoints of those women

(01:24:12):
longitudinally?
To then have that informationto say well, this is what has
happened like over time.
Now those types of things takepeople who are willing to do it.
It takes, you know, financialsupport, but that's the kind of
information like that we reallyneed to to move the needle Again

(01:24:33):
.
This is a war that has to befought on multiple fronts.
We have made tremendousprogress right over time.
We do have resources.
You know Tulane, the HTC there.
They've dedicated like anentire clinic, like they're
really trying to focus on, youknow, women and girls.

(01:24:54):
I know that LSU like has aninitiative, but they're really
also like trying to.
They've been involved with thefoundation.
So even here in the state thereare people who are trying, like
they.
You know they care.
I already drank that Kool-Aid along time ago.
You know I now have my clinic atOchsner.
You know we have voices likewithin this state, but as we

(01:25:15):
look at people like across thecountry, again using your
resources and the people youknow and hope, right as a tool
to say if I want to find aprovider, you know and I'm in
New Jersey.
If I want to find a providerand I'm in Iowa, you know, or
I'm in Washington state, iowa,you know, or I'm in Washington

(01:25:39):
state.
Like where?
Like where do I go to havesomeone who's at least willing
to listen and have thisconversation with me?
Cause it's not a one and done?
you know, with the with thewoman or a girl.
And so very early on.
Even when I have thoseconversations, I'm like listen,
I don't want you to think it'sthe one and done.
We may need to follow thisright out over time.
I can't say that prophylaxis oranything has to start right now

(01:26:00):
, but it doesn't mean that itdoesn't need to be at some point
.
But we need to follow this outand understand what's happening.
It's about having a provider, Ithink, who is knowledgeable and
willing, you know, to evaluate,but empowering yourself too
with the information that youneed to have.
So it's so good, you know, youknow.

Speaker 4 (01:26:16):
I evaluate, but empowering yourself, too, with
the information that you need tohave.

So it's so good.
You know, you know I do a lotof work on in in advocacy in
particular, just both withLouisiana Rare Disease Advisory
Council, but also with federallyand in in a lot of different
projects there.
One of the things that I'mreally excited about about the
future is this idea that wecould get a policy change within

(01:26:39):
the Medicaid Each state.
We're working on one here inLouisiana Accelerating Kids
Access to Care Act to be where achild that has been identified
as either having a rare diseaseor has a propensity of genetic

(01:26:59):
disposition for a rare diseasecould actually be reimbursed for
a specialist outside of thestate limitations.
It's a huge ask, it's somethingthat's been pushed back on over
and over again, but I actuallyfeel like I see the beginnings
of a glimmer of hope that therecould be some of this
legislative change from a policypoint of view.
And what we've told legislatorsis and I think that this is a

(01:27:21):
really big need and it's notjust for hemophilia, it's like a
lot of rare diseases obviouslyhave this issue, but when you
have a specialist that's acrossstate lines and you're on
Medicaid, you cannot go to aspecialist across state lines.
Even many insurance policieswon't allow you to do that.
So you know it starts to me, itstarts within that medicaid
framework and then maybemedicare, but then once you do,

(01:27:42):
I think the downstream happensin commercial as well.
But at the end of the day thatthere's this, what we've told
legislators legislators isespecially in the in in the
state of louisiana is if we caneven show that they're having to
go to Houston or they have togo to wherever to get a
specialized grant.
it actually could help identifythe number of patients that live

(01:28:04):
in the state that have thisneed, and it could attract those
same talented physicians fromother states to come here and so
that's exciting about Louisiana, but we're fighting for that
federally as well in a way tosee that maybe that from a CMS
change that could actually freeup the system to where people
could go to the right provideracross state lines.
I know there's a million otherissues that could run into there

(01:28:26):
, but that's something we'readvocating for.

I'm excited about the future.
It's so important, it's so, so,incredibly important, and I
think that that's one of thoseissues that you know when you
start throwing out those DEIlike terms and you say diversity
, equity and inclusion, peopleautomatically kind of go to race
.
Right.
And many times it has absolutelynothing to do with that.

(01:28:49):
So what you just mentioned,right, it's like an equity issue
.
Yes, so if I have greathealthcare, yeah, right.
Because of my job or myhusband's job, right.
And if there's no one here inthe state that treats the the
condition that my husband has,well, we can hop on a plane and
go and go to New York or Texasor California or wherever we

(01:29:10):
need to go.
Right, right.
Right.
Someone who's on Medicaid RightShould have a similar
opportunity.
Right, that's right.
Right Now, I'm not in any waysuggesting that it shouldn't it
should happen like with norestrictions, right?
Or shouldn't it should just bejust kind of carte blanche?
I think you have to establishthat is actually needed Right

(01:29:33):
First, Right, that is actuallyneeded right first.
Actually, Medicaid in Louisianawill allow you to have a
consultation.
You can go across state linesto have a consultation.
It takes an act of God.
I've done it a few times when Itell you it's like an act of God
.
It is incredibly difficult todo and it's incredibly difficult

(01:29:58):
from a Medicaid standpoint toget that consultation approved,
and it's incredibly difficult toget the receiving state to
agree to it too.
It is almost impossible.
But that continued care, that'sthe part that can't happen.
So when I have access to thatand you don't, that's an equity
issue.

And so when we're talking about things like
rare diseases right and womenand girls, um, it's about having
access to the same health careyes so especially if we say this
has got the best Healthcare inthe world In the US and
unfortunately, because of thesetypes Of barriers, there's a

(01:30:41):
vast diversity, that's right Ofpeople who are living Right next
door to something that couldsave their lives and they can't
get to it Because they're justIn whatever category.

Again, yes, wrong , it's wrong To toot that horn
and say again, when you heardiversity, equity and inclusion,
those are the types of things,yes, right, that we have to zero
in on right because that's whatreally matters we deal with
this a lot with rural health.

We've been working with uh hersa a lot on
this, because rural health,rural health with with um within
the context of why are peoplewho are three hours away from a
human affiliated treatmentcenter not participating in
trials?

They can't get to it.
They can't get to it.

It's not, yeah, so it's both equity and there's
also this idea that there'smissing pieces in a trial that
need to be present in a trial.
That's right, so that we canhave that best information.
You're not including all thepeople that you need to include.
You don't have the diversity ofpeople.

That's right, so that we can have that best
information, so you're notincluding all the people that
you need to include.
You don't have the diversity ofpeople.

That's exactly right Right.

You don't have people who again, there are
different types of people, Right.
So people who live rurallyactually may have a different
state of health.
That's right In general incomparison to someone who lives
in the city.
That's right.
Right, that's a certain kind ofdiversity that we need to know

(01:32:00):
about and kind of have as we'relooking for different
therapeutic options.
When I was just 45 minutesoutside of New Orleans, I was
the only hematologist on thatside of the lake that would see
patients with Medicaid.

Speaker 5 (01:32:15):
Wow, wow, wow.
That would see patients withMedicaid, wow, wow.

Wow, and you and I know that there's a ton of
people On that side of the lakethat don't ever go To the other
side of the lake because theycan't.
There's no bus route, there'sno way to get there, or they
can't take off from work.
They have a sick wife, a sickmother.
They just can't get there.

I was the only, the only one.
Wow, right.
And so when I was again just inthe center of New Orleans
because you know, we hadMedicaid transportation and we
did have a couple of satelliteclinics and places that we would
go, right, I thought that wewere killing it Right, I thought
that we were providing care.
I thought that we were killingit Right, I thought that we were

(01:32:58):
providing care.
And when I went there, I mean,it was heartbreaking and
sobering to know that there's somany people that couldn't get
there.
So I acted almost like a triagecenter.
So I said send me all, all ofthe adults, whether it was
hematology or oncology related,and I would try to see them and
go OK, ma'am sir, you reallyneed to get over there and do a

(01:33:23):
warm transfer, right?
I would pick up the phone andcall the colleague and say I
have Mrs Brown here.
She has anemia, that's why shecame to me, but it really looks
like she has stage four coloncancer.
She needs to come today.
Right, right, right, right,right, and we would send her.
Now did that lady have to havestage four?
You know, colon cancer?

(01:33:50):
Wow, right.
So it's those types of things.
And again, this extrapolatesand applies to people living
with rare bleeding disorders andit certainly applies to people
who are living with mild andmoderate hemophilia, including
women and girls, like these sametypes of of issues.
So when we're fighting forthings for people living with

(01:34:12):
rare diseases, there's so manypeople right that we're trying
to include when we're fightingto have care for people who live
rurally.
Right.
I mean, that could really changethe face of America, right, but
I didn't know that that existed.
Right, right right.
I thought we were killing itRight, like it wasn't a part of
my stratosphere.

Well, you only know what you know and, honestly
, that's so progressivecomparative to a lot of other
states.
It is, it's so progressive.
You are better than a certainnumber of folks it is.
But at the same time does thatmean you're meeting every need?
No one can meet every need, Ithink that this is.
The thing, too, is that this ispart of having grace for all of

(01:34:55):
us, because we're all on ajourney.
And while we know a lot, westill don't know everything we
don't know everything, and thereality is is that there are
probably, you know, many thingsthat we need to change and do
and it is about the satisfying.
The fire really in the house isburning down first and then
prioritizing.
I actually have a the chairmanof our board used to work for an

(01:35:18):
nonprofit organization that diddisaster response and relief
and one of the things they didthrough especially through
Hurricane Katrina, was sort ofdisseminating resources to these
really tragically, you knowdifficult damaged areas.
One of the factors that he usedto say was, he said, one of the
problems that you knoweverybody was mad at FEMA for a

(01:35:38):
while and it was, like he said,one of the problems that he
realized was that FEMA was verymethodical about what they did
and their mission was to managea crisis.
And he said the problem is youcan't manage a crisis.
He said you have to justrespond.
When there's a crisis going on,you just respond, but it is
once that crisis is now settledthat then you can sort of manage

(01:36:01):
some of the ancillary phase.
Two phase three of the recovery.
And I feel like in Americanhealthcare, like in North
America, for our healthcaresystem, you know, there are so
many people, whether it becancer, whether it be hemophilia
, whether it be all of thesethings we were so focused on
just having any solution andsome of those solutions created
their own sense of challengesand and and yet now we're

(01:36:24):
getting to a phase where some ofthose things can come down a
little bit.
I think right now we still havequite a few things that need to
be addressed from a policypoint of view as it pertains to
the insurance and all of that.
But we can't just go from onecrisis to the next.
I do feel like, overall, we areseeing some progress.
The problem is many of us feellike it's too slow and it's not

(01:36:45):
fast enough and all that stuff.
But if we can give each othergrace and still speak up for
ourselves and speak up forothers and really keep looking
until we find that compatibilitywith a provider, when we find
that compatibility with a, andsometimes, look, people will
drive forever to go find youknow, to go find you know the
right person, and withtelemedicine, that's an element

(01:37:08):
that sort of opened up a window.
I don't think that that's thelong-term solution, but there
are ways that those types oftools, I think that we can gain.
We can gain, just like thisconversation today is being
streamed and broadcast tothousands of people all over the
place, and that was never evenpossible, that's right.
Even just 10 years ago.

This wasn't a normal thing.
It was not a thing.

Yes, there's probably people listening to
this today that are going oh mygosh, I didn't even know that
there was somebody out there whoreally understood what I was
going through that there wassomebody out there who really
understood what I was goingthrough.
So, anyway, I just want to saythat I'm applaud seems like too
small of a word, but I'm sograteful for all the work that
you've done and all of theempathy that you've had.

I appreciate that and it starts with just caring
for one.

It does and it starts with just embracing your
calling what you've done.
And simultaneously, I think whatmany people miss and I'm going
to say this to all the patientsthat are listening right now I
think what oftentimes we miss isthat in a crowd of difficulty,
sometimes it just takes a sparkof one person to champion it

(01:38:15):
that makes progress for thewhole.
You know rising tides of allships.
If you can, just if you canjust rise above it for just a
minute in the emergency room inthat one-on-one conversation,
you think it's just you and that, but today you and I are having
just a one-on-one conversation,but there's thousands of people
.
It could maybe potentiallyelevate the conversation for the
whole community and this iswhat I want to say to all the

(01:38:37):
patients who are listening tothis.
It's so important that you getthis is that your diligence to
stay on task, to continueseeking answers for the
challenges that you've had andlooking for the right partners
and the people to join forceswith in your healthcare team is
not just going to fix a problemfor you, but it could fix a

(01:38:58):
problem for generations to comein your family, but for the
whole community.
You've done that.
You are lift.
I mean people are going.
Oh, we better pay attention.
This team is going to tell ushow it is, you know, but really
every one of us, as peopleliving with it, are also this,
you know.
We were talking about justbefore we started the recording
about how some of us are trainedfor this.

(01:39:19):
And some of us are trained bythis, and what's really magical
is when you have people like youin the corner that have been
both You've been trained for itand by the community that you
served, and so thank you so much, really from the bottom of my
heart.

Speaker 2 (01:39:32):
And I know I say that on behalf of thousands of
people that have said the samething, so we appreciate all you
do and keep it up, because weneed more of it, and we'll be
following you closely to seewhat we can do next.

So thank you so much.
Thanks, thanks for having me.

Thanks so much for joining us with this podcast
today.
I certainly hope that youenjoyed this.
I know I learned a lot and.
I think that you did tooFascinating enough.
I actually took notes.
Today I have some things that Itook some notes on and.
I don't always do that, so thisis really helpful and inspiring
to me, but I hope it was helpfuland inspiring to you too.
And if you have any questionsor if any thoughts come to mind
that you go man, who do I go to?

(01:40:08):
Where do I go?
I don't even know what my nextstep should be Don't hesitate to
reach out to us.
We're real people with a realoffice, with a real team of
people.
There's 15 of us around heretrying to help people every day,
and one of the things we do islove to help you as you are on
your journey.
So if you need that help, youcan always call us 888-529-8023.
Or you can email us at info athope-charitiesorg.

(01:40:30):
We would love to be able toserve you in any way that we can
.
Thanks for listening in todayand I look forward to seeing you
on the next one.
So take care.

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