March 4, 2023 • 26 mins
Esme Vazquez found her calling in life through her work in occupational therapy. She believes having Glanzmann Thrombasthenia helps her empathize and better care for the children she works with. Advocating for her patients became a passion that spilled over into her personal life and fueled her drive to advocate for the voiceless in her world of ultra-rare bleeding disorders.
In a short time, she has become a champion for those underserved and is making waves in the national bleeding disorder community. She now works with the National Hemophilia Foundation on the National Research Blueprint to correct those gaps in patient care.
Community Voices in Research
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Taylor Anne Burtz (00:00):
Welcome back to Bruised not Broken Life with
(00:02):
Glanzmann's Thrombasthenia.
For those of you who are new tous, Glanzmann's Thrombasthenia
is an extremely rare autosomalrecessive disorder of the blood
in which the platelets lackglycoprotein two B three a.
Hence, no fibrinogen bridgingcan occur and bleeding time is
significantly prolonged GT canbe life-threatening and is
(00:22):
estimated to affect one in 1million.
This podcast is presented by theGlanzmann's Research Foundation
and myself, Taylor Peter, ourproducer, and today we are
joined by an amazing advocatefor Glanzmann's community.
In fact, the National HemophiliaFoundation presented her with
the Mary m Gooley Humanitarianof the Year Award this past
(00:43):
August.
Very big, excited.
Welcome to Ms.
Esme Vasquez.
Esme Vazquez (00:49):
Thank you for having me here.
I'm very excited.
Taylor Anne Burtz (00:52):
We are too.
So, Esme, before we dive intoyour work and patient advocacy
can you tell us a little bitabout your journey with
Glanzmann's?
Esme Vazquez (01:00):
I was born and raised in Chicago, which is
currently where I live.
I was born in a very low incomeneighborhood to immigrant
parents, and I was diagnosedwith GT at the age of one.
So it was a very obviously avery difficult decision for my
parents and trying to navigatethe healthcare system and trying
(01:21):
to navigate insurance and, allthe policy that comes with just
a chronic condition.
And well GT kind of led me tohealthcare.
So I am an occupationaltherapist.
I work with children withspecial needs and I help those
families kind of navigate thehealthcare system.
And I see there's a lot ofsimilarities just overall like
(01:42):
dealing with a chroniccondition.
And I have always been such anadvocate for families who are
just dealing with any sort oflike medical diagnosis and.
More recently, I have gottenmore involved with the bleeding
disorder community.
I think my only regret is notdoing it a lot, a lot earlier in
my life and my career.
Taylor Anne Burtz (02:02):
How did you find yourself becoming an
advocate for the bleedingdisorder community?
Esme Vazquez (02:06):
I mean, I, for a long time I always, try to get
involved with the bleedingdisorder community and I would
try to attend advances, but theywere always very geared to
hemophilia.
And I never found anythingthere.
For me.
It was always very, veryhemophilia focused.
So then I, just, I took anotherway and I just focused on my
career.
(02:26):
And about two, three years ago,Dr.
Le Valentino, who used to be myhematologist, reached out to me.
And he was the one whomentioned, Hey, we're doing a
new initiative.
On research and we would like tosee if you wanna be involved.
And I, I'm very excited to beinvolved with the bleeding
disorder community, so Iaccepted that offer and I've
(02:47):
been working with the NationalResearch Blueprint for the past
two years.
Taylor Anne Burtz (02:51):
Now, and for those of you who don't know, Dr.
Lynn Valentino, he's the currentc e o of the National Hemophilia
Foundation.
Is that correct?
Esme Vazquez (02:59):
Correct, yes.
Taylor Anne Burtz (03:00):
And the nhf, so it's been around since 1984,
and as they've grown, they.
Have done wonders within thehemophilia community.
But they've noticed kind of theoutlined bleeding disorders, you
know such as Bernard Soer, VonWillebrands those which are
rare, but not super ultra rareor anything.
So they've been helping withthose.
(03:21):
But now, most recently as youmentioned, when he reached out
to you, they're starting to kindof focus a little bit more on
those ultra rares.
And so in their quest forhelping the bleeding disorder
community, they've launched kindof what you were starting to
talk about, the NationalResearch Blueprint.
Right.
Tell me a little bit more aboutthat.
Esme Vazquez (03:40):
So the National Research Blueprint started, I
believe in 2020.
So there was this wholeinitiative and I think hemo,
well the hematology community isa little late.
They are trying to engage thecommunity to be part of
research.
From the very beginning of howan idea is created for a
research study toimplementation, to
(04:00):
dissemination.
Research has shown that when thecommunity members are involved
in research, the outcomes arebetter.
Our quality of life is betterand our own healthcare outcomes
is better.
And I'm very familiar with thisbecause I've been doing that in
the disability community.
When we create a research study,we engage the community.
Like, what do you think of thisresearch protocol?
(04:22):
Is this something that you canparticipate?
What is your feedback?
What can you tell us?
So I'm very familiar.
Taylor Anne Burtz (04:28):
Is it worth pursuing?
Esme Vazquez (04:29):
Is it worth pursuing?
Is it meaningful to you?
Right, right.
What are, what are some of thebarriers that you can anticipate
with participating in thisresearch study?
So the hematology is trying todo the same thing.
They're trying to engage thecommunity and other areas of
medicine are doing the samething, engaging the community in
research studies.
So it started with some focusgroups.
(04:49):
They went out to different areasof the country.
And they asked the communitywhat's important to you in
research, what matters to you?
And from there they startedcreating like these groups in
different categories.
That, and it was based right outof the community.
So it's very kind of verygrassroots.
So that's how that wholestarted.
(05:10):
And then eventually we createdthe state of the science to
inform the community and theresearchers, Hey, the community
has spoken.
This is what's important tothem, and this is where the
research is gonna be headed.
And now we're doing the nationalresearch blueprint to see how
we're gonna kind of implement.
Those state of the sciencequestions that came up to the
(05:30):
surface from the community.
So it's very community driven.
It's very interesting to workwith researchers who've never
worked directly with a communitylike side by side, a PhD and
just a member from the bleedingdisorder community.
I mean, it's our lifeexperience.
You know, we are living withthis condition.
So we have a lot of input tosay.
Taylor Anne Burtz (05:50):
I'm sure it's eye-opening on both sides of the
spectrum, from the research sideof it for the researchers to,
finally hear back from thecommunity and then for the
community too, to hear from theresearchers what they're going
through as well, and whatobstacles they face when they go
forward with their own research.
Esme Vazquez (06:08):
Correct.
So, for example, one of our,we're in different groups right
now, so I, I'm one of theco-chairs for.
So we called ourselves the livedexperience experts because they
wanted to call us subject matterexperts, and there was a lot of
confusion with that title, wetook the name, the Lived
Experience experts, and we havea small little group, and in
that group we have ahematologist.
(06:28):
And we were talking aboutclinical trials, specifically
gene therapy trials, becausethat's kinda the frontier of
medicine next.
And when we were talking, I wastelling him, I was like, it's
very d.
When you think about thecommunity and you want them to
participate in these clinicaltrials and you want them to come
two or three times a week forblood work, families, work, like
(06:49):
if you are a single familyhousehold, or even if you are a
two family household, twoparents, and both parents work
full-time, having to take timeoff three times a week to bring
your child for a clinical trial,it's not always feasible for
everybody, when we think abouttraveling our, our individuals
who live in rural communities,you know, they have to be
(07:09):
represented in the researchtrials.
And that's one of the big thingsthat I'm very vocal about, like
diversity.
And when we think aboutdiversity, I think people only
only think ethnicity,socioeconomic status and
diversity also includes, Varietyin medical diagnosis, like we
want research in ultra rarebleeding disorders.
(07:30):
I obviously always say GT,everything is geared towards
hemophilia and we have anunderserved community of
bleeding disorders and we wannaadvocate for those.
And we, and I always mentionedindividuals who live in rural
areas, so we wanna be verydiverse in our clinical.
Taylor Anne Burtz (07:48):
Not accessibility.
I can see where that would bereally important, especially for
the ultra rares like Glanzmann'sbecause you may only have one or
two people within the entirestate, so you wanna be able to
make it accessible for them toparticipate in the clinical
trial.
Esme Vazquez (08:04):
We wanna include diversity in making sure that
everybody is accessible and likeyou said, we we're such a small
number.
Like how are we gonna reachthose individuals?
Can you go to their home and dothe blood draws instead of
having them come to a clinicthree times a week?
So we're trying to providesolutions and it is very
eye-opening to the researchesbecause I think they're so
focused in their research.
They don't think globally andsocially.
(08:26):
from a broader lens, everythingthat happens in a family and
when they're trying to navigatea chronic condition, health
insurance work, you know, familyresponsibilities and after
school activities, you know,juggling all that schedule.
Taylor Anne Burtz (08:42):
I can also see kind of, as we've done our
work and everything this pastcouple of years the bleeding
disorder community itself isreally small and so everybody
kind of knows everybody within.
The research side of it, or likethe people who are working with
these rare bleeding disordersand stuff, they tend, the
doctors tend to know each otherand I think that that might have
(09:05):
to do, might contribute to thewhole, not realizing that not
everybody within the actualultra rare community.
Who's affected by this disorderknows everybody.
And so it kind of, it's thatjust, you know, if I know them,
you know them.
Right.
Esme Vazquez (09:23):
Right, right.
I'm starting to realize thatit's, I get to know more and
more people and I'm Yes, yes.
Taylor Anne Burtz (09:29):
Or you know, they'll be like, oh, well this
person has GT, you know them.
Right.
And it's like, No, hold on.
And you get really excited,right, Now are you the only
person with Glanzmann's on thesteering committee?
Esme Vazquez (09:46):
Yes.
Taylor Anne Burtz (09:47):
I was looking it up on the National Hemophilia
Foundation's website.
Saw kind of how like they haveit set up in working groups and
everything.
So they did have a working groupspecifically for Ultra Rares.
How did that work when you onlyhave like one person with
Glanzmann's from there?
Because everybody's experienceis so different.
Esme Vazquez (10:07):
So I wasn't in that group, so I'm not sure who
the, the person they asked me tobe in that.
And instead I chose to be in thediversity, equity and inclusion
group.
Okay.
So just to kinda, to leteverybody know, so there's the
community wanted more researchon hemophilia A and B.
They wanted more research on vonWillebrands platelet dysfunction
(10:30):
and other mu cutaneous bleedingdisorder.
Ultra Rares.
That's the third one.
The fourth one is researchpriorities for the health of
women and girls and persons withthe potential to ate.
The fifth one was diversity,equity and inclusion in
healthcare services andresearch.
And then the sixth one is justfacilitating priority research
(10:52):
in inheriting bleedingdisorders.
So those were the six groups inthe state of the science and I
was in the health and equity.
So I'm not really sure how, howI work with the ultra rare
mm-hmm.
And what their, their priorityquestions were in terms of like,
I think more research in ultrarare.
Taylor Anne Burtz (11:11):
I agree with like your idea of going with the
diversity one because I feellike in general working on that
particular issue, I mean, it'sgoing to help the Glanzmann's
community eventually anyways.
It's that whole encompassingthing where let's, let's fix
this problem.
Let's fix this gap in care inorder to help these communities
(11:34):
that are like you, like you weresaying, they're underserved.
Esme Vazquez (11:37):
Right, and, and that's exactly how I felt too.
Exactly how I, feel like I cancontribute as a female with an
ultra rare bleeding disorder.
I can give a lot of input alsoin that sense, how it is very
difficult for us to navigatelike our healthcare system with,
insurance and finding healthcareproviders that understand GT,
it's constantly advocating.
(11:59):
It's like nonstop educatinghealthcare professionals on our
diagnosis.
Taylor Anne Burtz (12:04):
So has anything in this experience,
surprised you?
Was there anything that youweren't really expecting when it
came to this working group thatyou're in?
Was there an issue that you justweren't necessarily aware of?
Esme Vazquez (12:17):
I realize that sometimes.
Researchers don't reallyunderstand the policy with
insurance.
So obviously researchers go tothe htc, the hemophilia
treatment centers, to do theirresearch studies and to look for
participants in their researchstudies.
But I, always keep telling themthere's a whole group of
(12:37):
individuals who can't access forwhatever reason, those HTCs,
whether it's because it's notwithin driving distance.
Or maybe because they have an HM O or a Medicaid replacement
plan that doesn't cover them,for them to go to a research
institution that has an htc.
Because one doctor was like, whydon't they just transfer their
(12:58):
care to an htc?
And I tell them, like, it, it'snot always that easy.
There's a lot of insurance thatyou have to deal with mm-hmm.
before you can transfer yourcare to an htc.
So there's all this policy thatI have to.
Educate them that they don'tdeal with it.
You know, it's us going to thedoctors and getting our
referrals and Getting this intoa healthcare system.
Taylor Anne Burtz (13:19):
This is why something like this is so
important because you areraising these issues and you're
saying, okay, yes, I get whereyou're coming from, but at the
same time, like, this is whythat could be a problem.
And, and you're hate using thisterm again, but you're opening.
Like you're, you're making themaware of an issue that they just
never really were.
And you know, there was a longtime where hemophilia treatment
(13:43):
centers weren't even reallydiscussed within the glance
men's community because it justwas something that, you know,
you got your hematologistfamiliar with your disorder
mm-hmm.
and that's who you relied on wasyour one hematologist or your
one hematology team.
Whereas like bringing.
Anybody else into it couldpotentially complicate things.
(14:06):
So now that these hemophiliatreatment centers are, I guess,
offering these resources alittle bit more, and they're a
little bit more educated withingt but it's time to kind of
start leaning on them a littlebit more and, and, and having
those opportunities open up,right.
(14:27):
I get to ask a super funquestion.
Esme Vazquez (14:28):
Okay,
Taylor Anne Burtz (14:30):
So we saw you at the National Hemophilia
Foundation Conference lastAugust in Houston, and you were
on a panel, I cannot rememberthe name of the session, but you
were on a panel and they asked areally good question.
And it was like something alongthe lines of like, if money were
no objects, like what would youwant?
So this is a kind of a spin onthis.
(14:51):
If the world were a perfectplace right now, how would you
picture patient care for someonewith glands myths?
Esme Vazquez (14:59):
One, I would like individuals with glands myths to
be able to choose whathematologist they wanna go to,
cuz I know not everybody hasthat option.
And I would want everybody to.
Have access to the latesttreatment and be aware of what
their options are.
I'm still even learning like allthe different options.
Right.
And I think fully transparent,fully accessible.
(15:24):
Money's not an option.
Insurance is not an option.
You can have any treatment youwant that's appropriate for you
and have access to it.
Not having to deal withappealing to an insurance
company because your, yourtreatment, your therapy got
deni.
And equal access, like, not,having to do with all the
barriers that in the healthcaresystem places on you,
Taylor Anne Burtz (15:45):
having to basically become like a health
insurance expert.
Esme Vazquez (15:48):
full equitable care across the board, right.
To everybody.
Taylor Anne Burtz (15:53):
I completely agree.
Completely agree.
So, You've talked about howyou're an occupational therapist
and everything.
You've talked about how you kindof got into the patient advocacy
for bleeding disorders andeverything.
Just kind of recently, what doesthe future look like for sme?
Where do you see this journey ofyours going?
Esme Vazquez (16:12):
I like the way their research is headed.
I like that they are includingthe community I like.
Researchers, MDs and PhDs nowhave to recognize somebody from
the bleeding disorder communityas an equal part of that
research team.
I think that's a nice directionthat we're heading.
I don't know if everybody'sgonna be happy with that, cause
(16:32):
I think there's a lot ofindividuals who don't consider
us experts.
But I think we have a lot tooffer and a lot that we can
contribute.
I like that.
Having our voice heard in theentire research process.
Not just asking us to be aparticipant in a study, but
asking us, what do you think thedesign of this study should look
like?
(16:53):
And obviously a PhD.
They have a lot of resources andthey're very experienced.
But I think together as a teamwith what we can bring to the
table and what they can bring tothe table, the research can be
much stronger.
Taylor Anne Burtz (17:06):
Well, I think that there's a lot of stuff
that.
You know, people don'tnecessarily realize could be
related to their GT.
So when you fill out like one ofthose, like data surveys or
whatever, when it's notnecessarily asking you about
your life or like your ownexperiences and everything and
not getting the full picture,it's kind of hard to do it
justice, you know?
(17:28):
And, and I have noticed that thesurveys that are coming out now
are, are much more.
in depth.
They're asking more and morequestions, you know things like,
you'll see like mental healthquestions on there and
everything, and then mm-hmm.
then you get into the questionsof, okay, well, like we just
recently realized, and I don'tknow why it was never brought
(17:51):
up, but like, SSRIs can, hinderplatelet functioning or hinder
platelet counts.
And so that right there, if youare dealing with depression and
you're on antidepressants andyou can't take SSRIs, okay, well
then what's your other option ifsomething doesn't work for you?
So it's just good to kind ofknow Right.
The entire picture.
Esme Vazquez (18:11):
This is so you bring such a good point because
that's a part of the diversityin the research study, right?
We want the participants inresearch to be diverse, and
that's one of the things thatwe're working on too.
How do we recruit more diversityin clinical trials, especially
if we're heading towards genetherapies and not all our genes
(18:32):
are the same and now you areadding medication to it and all
these other factors that can.
The efficacy of that trial, themore diverse the pool of
participants is, the strongerthat the results of that study
are.
So we gotta make sure that weget individuals who are very
diverse and maybe have somecomorbidities.
(18:53):
If they have a mental healthright condition on top of that,
and they're taking medicationand now they're gonna do like
gene therapy.
How is all that gonna affecteverything?
Like the physiology in our bodyis so complex, we need to get
really diverse.
And that's one of the thingsthat.
Really passionate about.
Yeah.
Making sure that there'sdiversity in good representation
(19:14):
in research trials.
Taylor Anne Burtz (19:16):
Well, and it's important too because a lot
of these, a lot of thesedisorders do have comorbidities,
but when you have such a smallsampling, you can't figure out
what those could potentially be.
So now that they're asking allof these questions, especially
with Glanzmann's, and you know,the ultra.
(19:36):
And everything you're startingto see, okay, hold on a second.
Why do three quarters of thesepeople have connective tissue
issues?
Or why do three quarters ofthese people have asthma or,
something like that?
And so now these researchers arelike, oh, hold on a second.
Maybe there's something to that,like maybe this has now affected
(19:56):
this.
And it, and it helps as peopleare now.
People are, especially withGlanzmann's are living longer
than they ever were consideredto be able to live.
And now that comes with, are thetypical issues of aging,
rheumatoid arthritis, or to getknee replacements, hip
replacements, right, that typeof thing.
Or heart disease and having toget heart surgery, so when
(20:20):
you're able to, startrecognizing some of those
patterns and you're able to kindof head it off with other
patients and let them know tolook out for it.
I mean, all around you're justkind of getting better patient
care overall, which I mean is isthe ultimate goal, right?
Well, I know that this is anexciting time for me and for
(20:40):
Peter with the Ultra Wears.
And with Glanzmann's, with thisfocus kind of having shifted
medical communities finally kindof sitting up, taking notice and
everything how do you feel aboutit?
Because you are, you're similarin age to us, so you know that
it really hasn't been up untilthese past, what, five, 10 years
that it's really.
(21:01):
at the forefront of everybody'smind.
Esme Vazquez (21:03):
It's very exciting.
I mean, it's about time, right?
yes.
it was really nice to be at theBleeding Disorder conference
and, and having sessions onultra wear disorders and meeting
other individuals with ultrawears and having like our own
little community, just the wayindividuals with hemophilia,
like they, they have their ownlittle community.
(21:24):
Yeah.
And it's nice to, Research peoplike companies pharmaceutical
companies interested in ultrarare disorders and ultra rare
bleed disorders.
Taylor Anne Burtz (21:32):
And it's asking questions.
Esme Vazquez (21:34):
Asking, yes, asking being very exciting.
Taylor Anne Burtz (21:38):
So we had somebody who I was talking to,
it's just somebody who is withinthe industry.
She's kind of a consultant andstuff.
And so she reached out to me andshe goes, Hey, so.
I have a company that's tryingto decide whether or not they're
going to go for F D A approvalfor Glanzmann's or if they're
gonna go towards something elseand they're on the fence about
(22:03):
it.
And what they've heard fromhealthcare providers is that
what glance men's patients haveright now works fine.
They don't need anything else.
And I was like, what?
Hold on.
No, no, no, no, no.
And she was like, okay, that'swhat I thought the answer was
going to be, but I wanted toreach out to you.
(22:26):
And so I immediately was like,options are great because, one
medicine's not necessarily goingto work for everybody.
Or what if, we talked about thiswith the being able to get it
approved with health.
I.
Some medicine can get approvedwith health insurance and other
medicines don't.
It really just depends on yourpolicy or your company or
(22:46):
anything like that.
Getting the phone calls and thequestions now is really exciting
because I can be like, hold on asecond, because I know about 600
people who can tell you, no,that's not the case.
They want options.
I think that this is, We'reheaded in a really good
direction.
W you know, patient's voices arestarting to be heard, right?
(23:07):
I hope they continue to beheard.
Completely So we always ask thislast, I say always like, we've
been doing this for years, Wealways ask this last, but what
would you say to your youngerself about Glanzmann's.
What would your advice be?
Esme Vazquez (23:26):
Glanzmanns' shaped the, the kind of person that I
am.
You know, I, don't think I wouldbe the same person if it wasn't
for my glance men.
My Glanzmann's Thrombastheniahas one.
It let me to be a healthcareprovider, so I know like, okay,
you're gonna be a healthcareprovider, you're gonna be
successful and.
Take care of individuals, ithelps me relate to my patients a
(23:49):
lot better.
I can understand them becausethey are also going through a
chronic condition, so at acertain level I can relate to
them.
I'm more empathetic toindividuals, right?
I, I can see it just makes me alittle bit more compassionate as
a, the.
And I am, I'm very grateful forthat.
I never thought I would say thatas a, as a young person, now
(24:10):
that I'm older and I'm so awareof kind of the world and what
Glanzmann's has added to mylife, I would not be the, the
same kind of person if it wasn'tfor that.
So I'm very grateful that I,have it.
I don't know what kind of personI would be
Taylor Anne Burtz (24:23):
So we talked about the National Hemophilia
Foundation's National ResearchBlueprint.
If you're interested and youwant to contribute to their
mission, you can byparticipating in the Community
Voices and research.
So that is basically a bunch ofsurveys and stuff that will
basically they tailor it to you.
So as your answers go, it kindof builds in which surveys they
(24:47):
send to.
We will link it in the showdescription if that is something
that you're interested in.
As Mia said, it, it does helpwith figuring out what gaps
they're trying to to kind offill.
We do have a couple of newsitems, so registration for the
Glanzmann's ResearchFoundation's first educational
conference is, You can registerwww.curegt.org and we'll
(25:13):
continue announcing our speakersand their specialties via our
website and social media.
Speaking of social media if youhave Glanzmann's and you have
not found us on Facebook, wehave an amazing Facebook support
group.
So look us up and find.
And then remember that there area limited amount of slots
available for the conference.
So if you know you're joiningus, go ahead and grab your spot.
(25:36):
And then last but not least,don't forget to subscribe and
rate our podcast.
This will increase ourvisibility and help spread
awareness with Glanzmann's.
And I just wanna do a finalthank you to Esme and to our
listeners.
And remember, you may be one ina million, but you're not alone.
Welcome back to Bruised not Broken Life with
(00:02):
Glanzmann's Thrombasthenia.
For those of you who are new tous, Glanzmann's Thrombasthenia
is an extremely rare autosomalrecessive disorder of the blood
in which the platelets lackglycoprotein two B three a.
Hence, no fibrinogen bridgingcan occur and bleeding time is
significantly prolonged GT canbe life-threatening and is
(00:22):
estimated to affect one in 1million.
This podcast is presented by theGlanzmann's Research Foundation
and myself, Taylor Peter, ourproducer, and today we are
joined by an amazing advocatefor Glanzmann's community.
In fact, the National HemophiliaFoundation presented her with
the Mary m Gooley Humanitarianof the Year Award this past
(00:43):
August.
Very big, excited.
Welcome to Ms.
Esme Vasquez.
Esme Vazquez (00:49):
Thank you for having me here.
I'm very excited.
Taylor Anne Burtz (00:52):
We are too.
So, Esme, before we dive intoyour work and patient advocacy
can you tell us a little bitabout your journey with
Glanzmann's?
Esme Vazquez (01:00):
I was born and raised in Chicago, which is
currently where I live.
I was born in a very low incomeneighborhood to immigrant
parents, and I was diagnosedwith GT at the age of one.
So it was a very obviously avery difficult decision for my
parents and trying to navigatethe healthcare system and trying
(01:21):
to navigate insurance and, allthe policy that comes with just
a chronic condition.
And well GT kind of led me tohealthcare.
So I am an occupationaltherapist.
I work with children withspecial needs and I help those
families kind of navigate thehealthcare system.
And I see there's a lot ofsimilarities just overall like
(01:42):
dealing with a chroniccondition.
And I have always been such anadvocate for families who are
just dealing with any sort oflike medical diagnosis and.
More recently, I have gottenmore involved with the bleeding
disorder community.
I think my only regret is notdoing it a lot, a lot earlier in
my life and my career.
Taylor Anne Burtz (02:02):
How did you find yourself becoming an
advocate for the bleedingdisorder community?
Esme Vazquez (02:06):
I mean, I, for a long time I always, try to get
involved with the bleedingdisorder community and I would
try to attend advances, but theywere always very geared to
hemophilia.
And I never found anythingthere.
For me.
It was always very, veryhemophilia focused.
So then I, just, I took anotherway and I just focused on my
career.
(02:26):
And about two, three years ago,Dr.
Le Valentino, who used to be myhematologist, reached out to me.
And he was the one whomentioned, Hey, we're doing a
new initiative.
On research and we would like tosee if you wanna be involved.
And I, I'm very excited to beinvolved with the bleeding
disorder community, so Iaccepted that offer and I've
(02:47):
been working with the NationalResearch Blueprint for the past
two years.
Taylor Anne Burtz (02:51):
Now, and for those of you who don't know, Dr.
Lynn Valentino, he's the currentc e o of the National Hemophilia
Foundation.
Is that correct?
Esme Vazquez (02:59):
Correct, yes.
Taylor Anne Burtz (03:00):
And the nhf, so it's been around since 1984,
and as they've grown, they.
Have done wonders within thehemophilia community.
But they've noticed kind of theoutlined bleeding disorders, you
know such as Bernard Soer, VonWillebrands those which are
rare, but not super ultra rareor anything.
So they've been helping withthose.
(03:21):
But now, most recently as youmentioned, when he reached out
to you, they're starting to kindof focus a little bit more on
those ultra rares.
And so in their quest forhelping the bleeding disorder
community, they've launched kindof what you were starting to
talk about, the NationalResearch Blueprint.
Right.
Tell me a little bit more aboutthat.
Esme Vazquez (03:40):
So the National Research Blueprint started, I
believe in 2020.
So there was this wholeinitiative and I think hemo,
well the hematology community isa little late.
They are trying to engage thecommunity to be part of
research.
From the very beginning of howan idea is created for a
research study toimplementation, to
(04:00):
dissemination.
Research has shown that when thecommunity members are involved
in research, the outcomes arebetter.
Our quality of life is betterand our own healthcare outcomes
is better.
And I'm very familiar with thisbecause I've been doing that in
the disability community.
When we create a research study,we engage the community.
Like, what do you think of thisresearch protocol?
(04:22):
Is this something that you canparticipate?
What is your feedback?
What can you tell us?
So I'm very familiar.
Taylor Anne Burtz (04:28):
Is it worth pursuing?
Esme Vazquez (04:29):
Is it worth pursuing?
Is it meaningful to you?
Right, right.
What are, what are some of thebarriers that you can anticipate
with participating in thisresearch study?
So the hematology is trying todo the same thing.
They're trying to engage thecommunity and other areas of
medicine are doing the samething, engaging the community in
research studies.
So it started with some focusgroups.
(04:49):
They went out to different areasof the country.
And they asked the communitywhat's important to you in
research, what matters to you?
And from there they startedcreating like these groups in
different categories.
That, and it was based right outof the community.
So it's very kind of verygrassroots.
So that's how that wholestarted.
(05:10):
And then eventually we createdthe state of the science to
inform the community and theresearchers, Hey, the community
has spoken.
This is what's important tothem, and this is where the
research is gonna be headed.
And now we're doing the nationalresearch blueprint to see how
we're gonna kind of implement.
Those state of the sciencequestions that came up to the
(05:30):
surface from the community.
So it's very community driven.
It's very interesting to workwith researchers who've never
worked directly with a communitylike side by side, a PhD and
just a member from the bleedingdisorder community.
I mean, it's our lifeexperience.
You know, we are living withthis condition.
So we have a lot of input tosay.
Taylor Anne Burtz (05:50):
I'm sure it's eye-opening on both sides of the
spectrum, from the research sideof it for the researchers to,
finally hear back from thecommunity and then for the
community too, to hear from theresearchers what they're going
through as well, and whatobstacles they face when they go
forward with their own research.
Esme Vazquez (06:08):
Correct.
So, for example, one of our,we're in different groups right
now, so I, I'm one of theco-chairs for.
So we called ourselves the livedexperience experts because they
wanted to call us subject matterexperts, and there was a lot of
confusion with that title, wetook the name, the Lived
Experience experts, and we havea small little group, and in
that group we have ahematologist.
(06:28):
And we were talking aboutclinical trials, specifically
gene therapy trials, becausethat's kinda the frontier of
medicine next.
And when we were talking, I wastelling him, I was like, it's
very d.
When you think about thecommunity and you want them to
participate in these clinicaltrials and you want them to come
two or three times a week forblood work, families, work, like
(06:49):
if you are a single familyhousehold, or even if you are a
two family household, twoparents, and both parents work
full-time, having to take timeoff three times a week to bring
your child for a clinical trial,it's not always feasible for
everybody, when we think abouttraveling our, our individuals
who live in rural communities,you know, they have to be
(07:09):
represented in the researchtrials.
And that's one of the big thingsthat I'm very vocal about, like
diversity.
And when we think aboutdiversity, I think people only
only think ethnicity,socioeconomic status and
diversity also includes, Varietyin medical diagnosis, like we
want research in ultra rarebleeding disorders.
(07:30):
I obviously always say GT,everything is geared towards
hemophilia and we have anunderserved community of
bleeding disorders and we wannaadvocate for those.
And we, and I always mentionedindividuals who live in rural
areas, so we wanna be verydiverse in our clinical.
Taylor Anne Burtz (07:48):
Not accessibility.
I can see where that would bereally important, especially for
the ultra rares like Glanzmann'sbecause you may only have one or
two people within the entirestate, so you wanna be able to
make it accessible for them toparticipate in the clinical
trial.
Esme Vazquez (08:04):
We wanna include diversity in making sure that
everybody is accessible and likeyou said, we we're such a small
number.
Like how are we gonna reachthose individuals?
Can you go to their home and dothe blood draws instead of
having them come to a clinicthree times a week?
So we're trying to providesolutions and it is very
eye-opening to the researchesbecause I think they're so
focused in their research.
They don't think globally andsocially.
(08:26):
from a broader lens, everythingthat happens in a family and
when they're trying to navigatea chronic condition, health
insurance work, you know, familyresponsibilities and after
school activities, you know,juggling all that schedule.
Taylor Anne Burtz (08:42):
I can also see kind of, as we've done our
work and everything this pastcouple of years the bleeding
disorder community itself isreally small and so everybody
kind of knows everybody within.
The research side of it, or likethe people who are working with
these rare bleeding disordersand stuff, they tend, the
doctors tend to know each otherand I think that that might have
(09:05):
to do, might contribute to thewhole, not realizing that not
everybody within the actualultra rare community.
Who's affected by this disorderknows everybody.
And so it kind of, it's thatjust, you know, if I know them,
you know them.
Right.
Esme Vazquez (09:23):
Right, right.
I'm starting to realize thatit's, I get to know more and
more people and I'm Yes, yes.
Taylor Anne Burtz (09:29):
Or you know, they'll be like, oh, well this
person has GT, you know them.
Right.
And it's like, No, hold on.
And you get really excited,right, Now are you the only
person with Glanzmann's on thesteering committee?
Esme Vazquez (09:46):
Yes.
Taylor Anne Burtz (09:47):
I was looking it up on the National Hemophilia
Foundation's website.
Saw kind of how like they haveit set up in working groups and
everything.
So they did have a working groupspecifically for Ultra Rares.
How did that work when you onlyhave like one person with
Glanzmann's from there?
Because everybody's experienceis so different.
Esme Vazquez (10:07):
So I wasn't in that group, so I'm not sure who
the, the person they asked me tobe in that.
And instead I chose to be in thediversity, equity and inclusion
group.
Okay.
So just to kinda, to leteverybody know, so there's the
community wanted more researchon hemophilia A and B.
They wanted more research on vonWillebrands platelet dysfunction
(10:30):
and other mu cutaneous bleedingdisorder.
Ultra Rares.
That's the third one.
The fourth one is researchpriorities for the health of
women and girls and persons withthe potential to ate.
The fifth one was diversity,equity and inclusion in
healthcare services andresearch.
And then the sixth one is justfacilitating priority research
(10:52):
in inheriting bleedingdisorders.
So those were the six groups inthe state of the science and I
was in the health and equity.
So I'm not really sure how, howI work with the ultra rare
mm-hmm.
And what their, their priorityquestions were in terms of like,
I think more research in ultrarare.
Taylor Anne Burtz (11:11):
I agree with like your idea of going with the
diversity one because I feellike in general working on that
particular issue, I mean, it'sgoing to help the Glanzmann's
community eventually anyways.
It's that whole encompassingthing where let's, let's fix
this problem.
Let's fix this gap in care inorder to help these communities
(11:34):
that are like you, like you weresaying, they're underserved.
Esme Vazquez (11:37):
Right, and, and that's exactly how I felt too.
Exactly how I, feel like I cancontribute as a female with an
ultra rare bleeding disorder.
I can give a lot of input alsoin that sense, how it is very
difficult for us to navigatelike our healthcare system with,
insurance and finding healthcareproviders that understand GT,
it's constantly advocating.
(11:59):
It's like nonstop educatinghealthcare professionals on our
diagnosis.
Taylor Anne Burtz (12:04):
So has anything in this experience,
surprised you?
Was there anything that youweren't really expecting when it
came to this working group thatyou're in?
Was there an issue that you justweren't necessarily aware of?
Esme Vazquez (12:17):
I realize that sometimes.
Researchers don't reallyunderstand the policy with
insurance.
So obviously researchers go tothe htc, the hemophilia
treatment centers, to do theirresearch studies and to look for
participants in their researchstudies.
But I, always keep telling themthere's a whole group of
(12:37):
individuals who can't access forwhatever reason, those HTCs,
whether it's because it's notwithin driving distance.
Or maybe because they have an HM O or a Medicaid replacement
plan that doesn't cover them,for them to go to a research
institution that has an htc.
Because one doctor was like, whydon't they just transfer their
(12:58):
care to an htc?
And I tell them, like, it, it'snot always that easy.
There's a lot of insurance thatyou have to deal with mm-hmm.
before you can transfer yourcare to an htc.
So there's all this policy thatI have to.
Educate them that they don'tdeal with it.
You know, it's us going to thedoctors and getting our
referrals and Getting this intoa healthcare system.
Taylor Anne Burtz (13:19):
This is why something like this is so
important because you areraising these issues and you're
saying, okay, yes, I get whereyou're coming from, but at the
same time, like, this is whythat could be a problem.
And, and you're hate using thisterm again, but you're opening.
Like you're, you're making themaware of an issue that they just
never really were.
And you know, there was a longtime where hemophilia treatment
(13:43):
centers weren't even reallydiscussed within the glance
men's community because it justwas something that, you know,
you got your hematologistfamiliar with your disorder
mm-hmm.
and that's who you relied on wasyour one hematologist or your
one hematology team.
Whereas like bringing.
Anybody else into it couldpotentially complicate things.
(14:06):
So now that these hemophiliatreatment centers are, I guess,
offering these resources alittle bit more, and they're a
little bit more educated withingt but it's time to kind of
start leaning on them a littlebit more and, and, and having
those opportunities open up,right.
(14:27):
I get to ask a super funquestion.
Esme Vazquez (14:28):
Okay,
Taylor Anne Burtz (14:30):
So we saw you at the National Hemophilia
Foundation Conference lastAugust in Houston, and you were
on a panel, I cannot rememberthe name of the session, but you
were on a panel and they asked areally good question.
And it was like something alongthe lines of like, if money were
no objects, like what would youwant?
So this is a kind of a spin onthis.
(14:51):
If the world were a perfectplace right now, how would you
picture patient care for someonewith glands myths?
Esme Vazquez (14:59):
One, I would like individuals with glands myths to
be able to choose whathematologist they wanna go to,
cuz I know not everybody hasthat option.
And I would want everybody to.
Have access to the latesttreatment and be aware of what
their options are.
I'm still even learning like allthe different options.
Right.
And I think fully transparent,fully accessible.
(15:24):
Money's not an option.
Insurance is not an option.
You can have any treatment youwant that's appropriate for you
and have access to it.
Not having to deal withappealing to an insurance
company because your, yourtreatment, your therapy got
deni.
And equal access, like, not,having to do with all the
barriers that in the healthcaresystem places on you,
Taylor Anne Burtz (15:45):
having to basically become like a health
insurance expert.
Esme Vazquez (15:48):
full equitable care across the board, right.
To everybody.
Taylor Anne Burtz (15:53):
I completely agree.
Completely agree.
So, You've talked about howyou're an occupational therapist
and everything.
You've talked about how you kindof got into the patient advocacy
for bleeding disorders andeverything.
Just kind of recently, what doesthe future look like for sme?
Where do you see this journey ofyours going?
Esme Vazquez (16:12):
I like the way their research is headed.
I like that they are includingthe community I like.
Researchers, MDs and PhDs nowhave to recognize somebody from
the bleeding disorder communityas an equal part of that
research team.
I think that's a nice directionthat we're heading.
I don't know if everybody'sgonna be happy with that, cause
(16:32):
I think there's a lot ofindividuals who don't consider
us experts.
But I think we have a lot tooffer and a lot that we can
contribute.
I like that.
Having our voice heard in theentire research process.
Not just asking us to be aparticipant in a study, but
asking us, what do you think thedesign of this study should look
like?
(16:53):
And obviously a PhD.
They have a lot of resources andthey're very experienced.
But I think together as a teamwith what we can bring to the
table and what they can bring tothe table, the research can be
much stronger.
Taylor Anne Burtz (17:06):
Well, I think that there's a lot of stuff
that.
You know, people don'tnecessarily realize could be
related to their GT.
So when you fill out like one ofthose, like data surveys or
whatever, when it's notnecessarily asking you about
your life or like your ownexperiences and everything and
not getting the full picture,it's kind of hard to do it
justice, you know?
(17:28):
And, and I have noticed that thesurveys that are coming out now
are, are much more.
in depth.
They're asking more and morequestions, you know things like,
you'll see like mental healthquestions on there and
everything, and then mm-hmm.
then you get into the questionsof, okay, well, like we just
recently realized, and I don'tknow why it was never brought
(17:51):
up, but like, SSRIs can, hinderplatelet functioning or hinder
platelet counts.
And so that right there, if youare dealing with depression and
you're on antidepressants andyou can't take SSRIs, okay, well
then what's your other option ifsomething doesn't work for you?
So it's just good to kind ofknow Right.
The entire picture.
Esme Vazquez (18:11):
This is so you bring such a good point because
that's a part of the diversityin the research study, right?
We want the participants inresearch to be diverse, and
that's one of the things thatwe're working on too.
How do we recruit more diversityin clinical trials, especially
if we're heading towards genetherapies and not all our genes
(18:32):
are the same and now you areadding medication to it and all
these other factors that can.
The efficacy of that trial, themore diverse the pool of
participants is, the strongerthat the results of that study
are.
So we gotta make sure that weget individuals who are very
diverse and maybe have somecomorbidities.
(18:53):
If they have a mental healthright condition on top of that,
and they're taking medicationand now they're gonna do like
gene therapy.
How is all that gonna affecteverything?
Like the physiology in our bodyis so complex, we need to get
really diverse.
And that's one of the thingsthat.
Really passionate about.
Yeah.
Making sure that there'sdiversity in good representation
(19:14):
in research trials.
Taylor Anne Burtz (19:16):
Well, and it's important too because a lot
of these, a lot of thesedisorders do have comorbidities,
but when you have such a smallsampling, you can't figure out
what those could potentially be.
So now that they're asking allof these questions, especially
with Glanzmann's, and you know,the ultra.
(19:36):
And everything you're startingto see, okay, hold on a second.
Why do three quarters of thesepeople have connective tissue
issues?
Or why do three quarters ofthese people have asthma or,
something like that?
And so now these researchers arelike, oh, hold on a second.
Maybe there's something to that,like maybe this has now affected
(19:56):
this.
And it, and it helps as peopleare now.
People are, especially withGlanzmann's are living longer
than they ever were consideredto be able to live.
And now that comes with, are thetypical issues of aging,
rheumatoid arthritis, or to getknee replacements, hip
replacements, right, that typeof thing.
Or heart disease and having toget heart surgery, so when
(20:20):
you're able to, startrecognizing some of those
patterns and you're able to kindof head it off with other
patients and let them know tolook out for it.
I mean, all around you're justkind of getting better patient
care overall, which I mean is isthe ultimate goal, right?
Well, I know that this is anexciting time for me and for
(20:40):
Peter with the Ultra Wears.
And with Glanzmann's, with thisfocus kind of having shifted
medical communities finally kindof sitting up, taking notice and
everything how do you feel aboutit?
Because you are, you're similarin age to us, so you know that
it really hasn't been up untilthese past, what, five, 10 years
that it's really.
(21:01):
at the forefront of everybody'smind.
Esme Vazquez (21:03):
It's very exciting.
I mean, it's about time, right?
yes.
it was really nice to be at theBleeding Disorder conference
and, and having sessions onultra wear disorders and meeting
other individuals with ultrawears and having like our own
little community, just the wayindividuals with hemophilia,
like they, they have their ownlittle community.
(21:24):
Yeah.
And it's nice to, Research peoplike companies pharmaceutical
companies interested in ultrarare disorders and ultra rare
bleed disorders.
Taylor Anne Burtz (21:32):
And it's asking questions.
Esme Vazquez (21:34):
Asking, yes, asking being very exciting.
Taylor Anne Burtz (21:38):
So we had somebody who I was talking to,
it's just somebody who is withinthe industry.
She's kind of a consultant andstuff.
And so she reached out to me andshe goes, Hey, so.
I have a company that's tryingto decide whether or not they're
going to go for F D A approvalfor Glanzmann's or if they're
gonna go towards something elseand they're on the fence about
(22:03):
it.
And what they've heard fromhealthcare providers is that
what glance men's patients haveright now works fine.
They don't need anything else.
And I was like, what?
Hold on.
No, no, no, no, no.
And she was like, okay, that'swhat I thought the answer was
going to be, but I wanted toreach out to you.
(22:26):
And so I immediately was like,options are great because, one
medicine's not necessarily goingto work for everybody.
Or what if, we talked about thiswith the being able to get it
approved with health.
I.
Some medicine can get approvedwith health insurance and other
medicines don't.
It really just depends on yourpolicy or your company or
(22:46):
anything like that.
Getting the phone calls and thequestions now is really exciting
because I can be like, hold on asecond, because I know about 600
people who can tell you, no,that's not the case.
They want options.
I think that this is, We'reheaded in a really good
direction.
W you know, patient's voices arestarting to be heard, right?
(23:07):
I hope they continue to beheard.
Completely So we always ask thislast, I say always like, we've
been doing this for years, Wealways ask this last, but what
would you say to your youngerself about Glanzmann's.
What would your advice be?
Esme Vazquez (23:26):
Glanzmanns' shaped the, the kind of person that I
am.
You know, I, don't think I wouldbe the same person if it wasn't
for my glance men.
My Glanzmann's Thrombastheniahas one.
It let me to be a healthcareprovider, so I know like, okay,
you're gonna be a healthcareprovider, you're gonna be
successful and.
Take care of individuals, ithelps me relate to my patients a
(23:49):
lot better.
I can understand them becausethey are also going through a
chronic condition, so at acertain level I can relate to
them.
I'm more empathetic toindividuals, right?
I, I can see it just makes me alittle bit more compassionate as
a, the.
And I am, I'm very grateful forthat.
I never thought I would say thatas a, as a young person, now
(24:10):
that I'm older and I'm so awareof kind of the world and what
Glanzmann's has added to mylife, I would not be the, the
same kind of person if it wasn'tfor that.
So I'm very grateful that I,have it.
I don't know what kind of personI would be
Taylor Anne Burtz (24:23):
So we talked about the National Hemophilia
Foundation's National ResearchBlueprint.
If you're interested and youwant to contribute to their
mission, you can byparticipating in the Community
Voices and research.
So that is basically a bunch ofsurveys and stuff that will
basically they tailor it to you.
So as your answers go, it kindof builds in which surveys they
(24:47):
send to.
We will link it in the showdescription if that is something
that you're interested in.
As Mia said, it, it does helpwith figuring out what gaps
they're trying to to kind offill.
We do have a couple of newsitems, so registration for the
Glanzmann's ResearchFoundation's first educational
conference is, You can registerwww.curegt.org and we'll
(25:13):
continue announcing our speakersand their specialties via our
website and social media.
Speaking of social media if youhave Glanzmann's and you have
not found us on Facebook, wehave an amazing Facebook support
group.
So look us up and find.
And then remember that there area limited amount of slots
available for the conference.
So if you know you're joiningus, go ahead and grab your spot.
(25:36):
And then last but not least,don't forget to subscribe and
rate our podcast.
This will increase ourvisibility and help spread
awareness with Glanzmann's.
And I just wanna do a finalthank you to Esme and to our
listeners.
And remember, you may be one ina million, but you're not alone.
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