Women with Bleeding Disorders: Empathy and Innovation in Patient Care

This episode focuses on the often-overlooked experiences of women with bleeding disorders. Dr. Akshat Jain discusses the importance of advocacy, the need for gender-sensitive healthcare approaches, and how quality of life relates to treatment accessibility, emphasizing the urgency of creating a supportive environment for patients. 

• Dr. Jain’s background and expertise in bleeding disorders 
• Advocacy importance for women with bleeding disorders 
• Cultural stigmas and challenges women face in seeking care 
• Quality of life concerns in the context of bleeding disorders 
• The role of mental health support in comprehensive care 
• Managing pregnancy risks in women with bleeding disorders 
• The necessity of community advocacy and proactive outreach

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Episode Transcript

Speaker 1 (00:05):
Welcome to the Hope Podcast.
My name is Jonathan James and Iam proud to be your host today
to talk a little bit more inthis series about women with
bleeding disorders.
Today I want to say a big thankyou to our episode sponsor,
genentech, for sponsoring moreeducational content like this
that we can use to support manymore people living with bleeding
disorders.
We want to say a big thank youToday.

(00:27):
I'm really excited about aspecial guest that I've invited
to speak with me today aboutthis topic in so much depth.
Dr Akshat Jain, it is great tosee you today.
Thank you so much for joiningus for the Hope Podcast.

Speaker 2 (00:39):
Thank you very much.
I'm so happy to be here inperson and doing this.

Speaker 1 (00:43):
Yeah, it's exciting.
It really is.
There's so many things to talkabout.
I am always inspired every timeI get a chance to listen to you
give a presentation at ameeting, or even some of the
educational things you've donefor us and our patient community
.
I just am so inspired by yourpassion and your dedication and
you go the extra mile.
Matter of fact, I think youprobably go extra two or three

(01:04):
or five miles because there'sjust so much passion in your
heart that really you can tellthat you connect to the humanity
that we serve, and I thinkevery physician starts out that
way.
But the road is long and it'shard and there's a lot of things
to juggle and you do such abeautiful job at keeping people
at the center of your work.

Speaker 2 (01:39):
So really excited who treat people with blood
disorders.
It will not be possible ifcommunity messaging and advocacy
doesn't happen.
And what you do in a veryunique format is something so
special and I put power to you.

Speaker 1 (01:54):
Thank you so much.
Well, it's a labor of love, asit is for you, and I just you
know I'm excited to see you knowwhere we can bend the future
for our community, Because oneof the things I think is so
unique about the work that youdo is you're seeing such a large
volume of patients day in andday out, and I think you have a

(02:15):
unique perspective because ofsome of the type of people that
you're seeing every day arepeople that largely have been
sort of overlooked in the past.
So I want to dive into a lot ofthat Before we do.
Maybe someone's listening tothat You're famous in my house
and in Hopeland over here, butmaybe people are watching this
or listening to this right nowand they've never heard of Dr
Jane, and so they want to knowmore.

(02:36):
So tell us a little bit aboutwhere you're from, and really
you know where you practice,Sure.

Speaker 2 (02:41):
Absolutely.
Yeah, very likely people havenot heard about me, and that's a
good thing, I think, but I am apediatric hematologist
oncologist by training, but bydefault take care of people with
blood disorders of all ages,specifically with the bleeding
disorders.
Bleeding disorders I was bornand I grew up in India to a

(03:13):
fortunate family with blessingsfrom parents who are in the
field in healthcare, very wellknown at their art and having
been sensitized to caring forthe suffering by the dozens on a
daily basis.
Um, and something that reallyhad the major impression on what
you want to do or what you, you, you, what I wish to do with my

(03:36):
life moving forward, seeingthat up close, suffering to the
point where what we considerluxury is lost on most of the
patients around the world, andsomething that I could see up
close.
I had the good fortune of doingmy med school in Africa, so I
spent a good part of my medicalbeginnings in Africa learning

(04:02):
the tricks of the trade being aphysician and learning from the
best in that part right smack inthe middle of the HIV epidemic,
which did affect a lot of ourpatients with bleeding disorders
.
It was a global phenomenon, butit did affect every aspect of
patient care and challenged thesocial fiber globally, including

(04:26):
resource-limited settings inAfrica.
So having that exposure andtop-level education really
pumped me to move forward to theUnited States to get even more
advanced training and try toaddress some of those concerns.
I had seen growing up,specifically people who are

(04:49):
under-resourced and from areaswhere representation of people
coming from backgrounds whichare not as privileged is always
a challenge to access healthcare.
For the past 20 years being inthe United States, I think I

(05:11):
have offered care to patientswith blood disorders, first on
the East Coast in New York andnow in California, helping run
the bleeding disorder and theblood disorder program in
Southern California.
I think I find myself uniquelysituated in Southern California
to offer a wide range ofservices, including diagnostics,

(05:32):
cure, everything from simpletherapies to advanced gene
therapies, all in an order andwith the mission of making man
whole, finding an opportunity toget population in that part of
the country which is stillunderserved San Bernardino
County and parts of SouthernCalifornia where people suffer

(05:55):
from severe bleeding and blooddisorders, sometimes not having
a voice.
So having an opportunity to bean advocate and to create
something that isself-sufficient in a way to
offer therapy has really been anhonor of my life and I continue
to work to improve that on adaily basis.

Speaker 1 (06:14):
It's so amazing.
I know that you learned fromone of my good friends, our
mutual friend and really heroesin our community.
I know so many of the peoplethat we serve adore Dr Claudio
Sandoval and you studied withhim and trained with him at one
point, didn't you?
In New York 100%.

Speaker 2 (06:34):
Claudio Sandoval, to this day, continues to be my
mentor and the person that he is, with the passion that he has
for the disease in the community, whether it was learning
oncology care for children withhim and or learning the nuances
of management of hemophilia as ateacher, I hope and strive that

(07:00):
I do justice to that role thatI find myself in now for the
next generation of blooddisorder specialists, and I
think he's a fabulous person toknow and I'm proud to call him
my friend, as I know you do.

Speaker 1 (07:15):
Well, it's true, but I often say and I know you share
the sentiment, but it's notjust an issue of having a mentor
that you look up to, but it'salso just an issue of, you know,
having a mentor that you lookup to.
But it's also birds of afeather flock together, right?
I mean, it was probably, youknow, divine intervention that
you were able to connect withthem, because there are some

(07:36):
people that are just sodedicated to the human value of
what we do and what you do as aphysician is not just entirely
about science, it's also aboutjust things like quality of life
and the care of the humancapacity, and Dr Claudio
embodies that.
And when he began to tell meabout your background and his

(07:57):
work and your work together,even when you were with him, I
just thought, oh my gosh, Iinstantly knew your character
and who you are as a physician.
And then, of course, I've seenthat displayed over the last few
years and since we've beendoing things together too.

Speaker 2 (08:09):
And again, which is why I think this platform that
you have at Hope, what you'vebeen doing at Hope, is just so
powerful that it gets peoplewith the energies together.
The people there are greatphysicians, and I have many of
those that I am honored to callmentors and friend and
colleagues.
And then there are people whohave the energy, the spark, to

(08:33):
actually influence change in theecosystem.
And you need to be motivated.
You know, multiple cups ofcaffeine may still not power you
, maybe empower you through theday, but how do you power a
change?
And I'm honored to work withpeople and I must tell the story

(08:56):
now.
Seven years ago I was tasked tostart a blood disorder program.
I was hired from New York tocome to California to start
something and just this year,year 2024, two of my staff
members, two of my staff membersthat I work with in our
pediatric hematology oncologyenterprise, were referred to us

(09:22):
and almost correctly diagnosedwith the exact subtype of von
Willebrand disease.
By knowing within, by having aconversation within the office
space, in that office tables,just by the awareness and the

(09:44):
infrastructure that we havecreated in our little niche in
the clinic.
Two people within our space,people that I and everybody else
in our office works togethergot to the diagnosis of a blood
disorder.
Because they've heard about ourwork that we have done with
population, our resources thatwe've developed in Spanish and

(10:06):
in Asian dialects, all thediverse population that we serve
, they had the courage to comeup and say, oh, I think I have a
bleeding disorder and I think,from what I've heard from you,
dr Jain, and the staff, I wantto be checked out for it and
ended up having one and now arein a much better space.

Speaker 1 (10:26):
Right, unexplainable symptoms they've probably been
living with their whole lifetime.
But then, being immersed inthat environment, they felt the
confidence to say, wait a minute, that that might be me.
And then here they are in your,in your own environment, and
didn't even know until theyasked.

Speaker 2 (10:42):
Absolutely.
Colleagues, and our staffers,who are now our patients, have
really taken advantage of theknowledge base, the awareness
and the spark, the energy thatwe have created to say, hey, you
know what it starts with me IfI have the courage to go and get
and seek care and advocate formyself this culture.

(11:04):
I think that's the biggestsuccess.
I think that I can contributeto my teachers to say we've
created something where we areinspiring people within our
space alone to get to a pointwhere they can say, okay, I did
it, it worked for me, Let me nowgo out in the community.
So this spark that I got frommy teachers has now created an

(11:27):
awareness and has created achange in culture, which I think
is the most powerful thing.
And that's something that youare doing at Hope to inspire
that change, to finding givingpeople a platform to talk about
it and influence, change thatecosystem, and I think that's I
really value that and I can'tcompliment you enough.

(11:47):
But this example has just givenme more power to say what we
are doing goes beyond writingscripts and examining patients,
but also to influence a culture,to address these disorders that
are around us, surround us andaffect our mothers, sisters,

(12:08):
daughters, brothers, uncles andfathers all around in our
community, and it's verypowerful.

Speaker 1 (12:16):
So amazing I think that that's a driving force for
us is just how can we influencechange for our culture.
Man, it's just so incrediblejust to see that you're out here
advocating every day andtreating people, and I love what
you said about.
It goes beyond writing a script.
It's so much about we're reallysetting a precedent to give

(12:39):
people permission to askquestions and to investigate
people permission to askquestions and to investigate,
but it really takes that theprovider also to substitute to,
to be willing to listen,entertain and also create a also
a culture that it's a safething to investigate without the
risk of being sort of turnedaway without investigation, and

(13:01):
that that can be verydisheartening to someone.
It can take the fuel out oftheir, their fire.
They've been told no and peopledon't understand their whole
life, but then so they feel thatway.
But then when they feel a safeplace to walk into, to say let
me, this is safe for me to askquestions and it's okay if it's
not.
It's okay if it is, but likethere may be solutions that can
give me not just I want to makethis point.

(13:22):
I think this is important whenI'm doing advocacy in Washington
DC or with legislators, or evenespecially I just had a big
meeting with a bunch offormulary folks, for instance.
We talk about this term qualityof life, qol.
It's thrown around a lot, right?
I do believe that some peoplehave the perception, from a

(13:44):
policy point of view, thatanytime you're talking about QOL
or quality of life, it's sortof like a conversation of luxury
.
It's like you just want moreoptions.
We talk about this with havingoptions to different types of
drugs.
Not every drug works for everyperson the same way.

(14:05):
Even though the FDA label saysit a certain way, maybe your
body and your biome doesn'tinterpret it that way, right.
So we need options, right, andwe need the patients to be able
to voice what they'reexperiencing so that we can
maybe try a different optionthat might have a higher level
of efficacy.
But those things, a lot oftimes I find sometimes even in
the patient perception and atthe clinic level, there's a

(14:26):
sense of like.
These are tensions that I'msuffering through with life, but
it's not always about justgoing from.
I was good.
But in bleeding disorders,especially rare bleeding
disorders, we're talking aboutsomebody who has no quality of

(14:54):
life and then all of a suddennow has the ability to live an
almost normal lifestyle and it'slike somebody wrote a million
dollar check to empower you togo do your dreams because you
are inhibited by your physicalburden pain, inflammation,
difficult emotional challenges,feeling the imposter syndrome,
like you don't belong, you can'texist, cultivating and there's

(15:15):
permission to say let'sexperiment, let's investigate,
let's ask the questions and ifthey stick, they stick.
If they don't, they don't.
Well, we're going to providethe appropriate solution when
the time is right.
That cultural change is what'sactually going to change.

(15:39):
I think there's far more peopleliving with bleeding disorders
in America today, or even theworld today, than we have any
clue that are there.
They're just suffering silentlyinstead of being supported, and
that's the kind of change thathas to be made nurses know it

(16:06):
very well, my students know itvery well it's perfect to be
imperfect.

Speaker 2 (16:07):
I love that when you say it's perfect, it's perfectly
fine to be imperfect, I lovethat.
That's where we start, that,where that's where the mend
happens for you to make manwhole.
The purpose of why we do whatwe do on a daily basis, whether
it's this side of the aisle orthat side of the aisle, whether
it's advocacy or clinical care,cannot be boxed in.

Speaker 1 (16:32):
Amen, that's so good.

Speaker 2 (16:33):
It has to be collaborative, it has to be
symbiotic and it's perfect to beimperfect.
Yes, when we start out withthat level, set expectations, to
say you are open, this is safespace for you to come and say
that it is taboo in my communityto talk about heavy periods.
It's taboo to talk about withinmy community to say, hey, this

(16:59):
is something that is botheringme, it is affecting the way I
think, it's keeping me up atnight.
It's okay for me to say thatthese are things that are
imperfections, but what issociety has put limits on.
But it's perfectly fine to totalk about it in this space,
because I feel that I have ashot at getting to a point where

(17:23):
these imperfections can beaddressed.
Those are beauty spots that weare all born with, whether it's
a blood disorder or some otherlevel of imperfection.
That's what makes us human.
That's so good.
Having that pluralistic attitudetowards human.
This is is really what haspowered us and at least my

(17:45):
mission nationally, globally andevery other aspect that I have
an opportunity to advocate tosay if 80% of women with
hemophilia A who are carrierssuffer from bleeding all
throughout her life a known,accepted metric from
publications why less than 20%of those women ever get access

(18:08):
to care In a developed countryor in a developing country?
Why is that demographicdisadvantaged?
For every boy with hemophiliathat is established at a
hemophilia center of excellencein the United States, north
America or wherever there is amother that's sitting in the

(18:29):
household suffering silentlyfrom bleeding, how do we change
that?
How do we empower that minority?
That has been ignored veryconveniently.
But we understand the fact thatsomebody with hemophilia A,
who's a carrier, who's a woman,may have factor levels that
fluctuate with just by beinghuman, by being a woman, by

(18:52):
physiologic changes that comeswith menstruation and pregnancy
and age and puberty.
That does not take away theirright to get access to care
because they still bleed.
Factor level of 40% does notpreclude them from not having
long term joint damage.
The conversation and thediscussion that we have prompted

(19:16):
people to think about which ismild and moderate hemophilia A
boys equally and, moreimportantly, apply to those
mothers so true who run thefactor levels in the same ranges
but then yet suffer silently.
There is a known statistic witha paper done in 2026, 20, 2016.

(19:36):
There is a prevalent data thatdemonstrates disparity in delay
in diagnosis.
A boy with severe hemophiliagets access to care with a
median age time from birth toaccess to care about two and a
half months of age.
At two and a half months of age.

Speaker 1 (19:57):
Wow.

Speaker 2 (19:58):
For a symptomatic, severe hemophilia, a female.
That number is five timeshigher, about eight and a half
months to nine months of age,and they get access to first
care to a bleeding disordercenter or a referral to a center
of excellence for hematologyneeds.
Same level of bleeding, samefactor level, clearly tells you

(20:19):
that there is a six to sevenmonth delay in getting access to
care.
Wow, same level of risk ofdamage to their joints, same
risk of musculoskeletal andintracerebral brain bleeds
applies to these two populations, albeit rare in women because
of the genetics of severity inwomen.

(20:40):
But it just goes to say thatthere is this prevalent norm
that hemophilia affect boys andnot girls and thereby does
percolates down to every aspectof health care, whether it's an
insurance company or whetherit's a drug manufacturer, or if
it's a physician, a colleagueand physician, an advanced care

(21:02):
provider out in the community.
That is the prevalent notionthat if there is a girl that's
presenting with bleedingsymptoms, even if she's
screaming at the top of hervoice saying I have hemophilia,
is not taken seriously.

Speaker 1 (21:16):
And I mean just for people who maybe aren't familiar
with this, the intricacies ofthis problem, I think, correct
me if I'm wrong.
I believe the majority of thereason why that is a common
belief among treaters and maybenot even so much specialist with
Humefield, but the broadersense of medicine and medical
care, is largely because theliterature has predominantly

(21:40):
stated that point blank that itis a male predominant disease
for decades, I mean for as longas we've known that this is a
genetic disposition and what thechallenges are associated.
It really has been documentedin the literature as such.
So it's not unfounded that theywould believe that.
I think the tension is thatwe've got to change that and

(22:00):
everyone wants to.
Once they start to realizethese things, I, I, I love you
know some of those things I'mseeing change.
You know we're going to talkabout a little bit about masek.
Just had recently a document onuh, there's two 280 not 286
document 286.
Specifically speaking to that.
They I think it was in thereand again I might be misqu, I
think this is correct issomething like anyone that has

(22:26):
less than 100% factor level thatspecifically they identify this
women have a 70% chance ofhaving some type of bleeding
symptom, even if they have morethan 50% factor level,
essentially.
So there's an occasion that'sbeing identified here that it
doesn't have to be your typical,you know, male, with less than

(22:48):
1% factor for them to havebleeding episodes, which is
going to take decades to sort oflike re-teach, if you will.
The institutional educationalplatforms and, while we're

(23:12):
working on that, the commontreatment protocols cannot delay
another 25 years for us when weknow that this is an issue,
even for when we're just with alittle higher, you know, with
some factor level production.
So so I'm, I'm, I think it'simportant and I'm I'm constantly
an advocate, and I know you'veheard me say this a lot, but I'm

(23:32):
constantly advocating.
I think the patient voicematters in this, because the
more that we continue to knockon the door and say, hey, this
is a problem, I think it is ittakes from a patient point of
view, it takes self-education.
You've got to put yourself in aboat where you can, at some
level, have an educatedconversation with treaters who
may not have an awareness ofthis yet, and simultaneously,

(23:53):
for those like I, look at you asa leader, as someone who is
approaching thingsextraordinarily differently.
I'd love for you to talk alittle bit about how, when you
have a male person that's severeand that comes into your clinic
if I'm not mistaken I believeyou've told me this before is
that you literally test everywoman within a hundred mile
radius of that person.
Right, because you just want toknow for sure.

(24:14):
And so tell me a little bitabout that.
This is what is going.
I want everybody to know.
This is the kind of care ofwhat you're doing in your clinic
that's different than what wesee in other places, the kind of
care of what you're doing inyour clinic that's different
than what we see in other places.
This is the level of of carethat's going to be needed to
really move the needle, becauseif other treatment centers and
other clinics and other and theother research partners that are
going can can see what you'redoing with your patient

(24:36):
population, I, I think it wouldvastly, you know, it would
improve, even while theeducation system and we're
trying to change that literatureissue, right?
Is that on track?

Speaker 2 (24:44):
Absolutely, jonathan.
You know.
A lot of what we do, either ashealthcare leaders, in
administration and or asphysicians, has to do with how
we work together with ouradministrators in the healthcare
system.
What may be ideal may not bepractical.

Speaker 1 (25:09):
While it may be my, you don't like that as a patient
, I don't like to hear thatAbsolutely, but it is reality,
right, we live in a world that'sdriven by a lot of matrix of
decisions that we don't allcontrol everything.

Speaker 2 (25:21):
But I think the power is to not like anything in life
not to be bogged down.
When you get a no at a boardmeeting, that's good.
How do we keep moving forward?
How do we keep hammering andhammering, and hammering until
it gets molded into what youwant it to be, or at least close
Persistence, persistence.
That's right and it works inevery aspect of healthcare,

(25:42):
whether it's building a programfrom the administrator's
standpoint or the payers whohave to pay for it to make sure
it's sustainable.
You can burn through a milliondollars in six months and have
nothing to show for it if it isnot sustainable.
So I think the idea is that toimpart a change is great, but to

(26:05):
sustain the change is moreimportant and I see value in
creating something like that.
So a person with severehemophilia, a walks in gets
referred from a dentist or aprimary care provider because of
excessive bleeding we have hadI have had a vision of bleeding

(26:30):
we have had.
I have had a vision and now itis materializing in our local
and hopefully it'll catch onnationally as an Ask Me program
Ask Me by an extension.
A second aspect of it is AskMom program.
The Ask Mom program is everyboy that walks in.
Once they are situated for thehemophilia care, diagnostics,
therapeutics and care, take fiveminutes or 10 minutes out of

(26:53):
that visit to ask the mom Do youknow that you may have
something because of the geneticbasis of this disease?
Believe it or not?
More often than not, about 90%of those conversations through
our Ask Mom program.
What we are hearing is many atimes jaw-dropping those

(27:19):
journeys, those stories thatthese mothers and their siblings
, sometimes in the samehousehold, have gone through,
what they have been subjected toin terms of social taboos, in
terms of access to medical careand subspecialists, especially
hematologists, the shunning thatthey have received from

(27:41):
community health resources whichare otherwise available for all
, is so heartbreaking that, bycreating an awareness that this
is an issue, an unmet need, Ithink we are now entering into a
stage, a decade, where theseunderrepresented minorities, I

(28:02):
think, will find a voice.
They are already finding avoice.
I have had the great honor toserve as the American Society of
Hematology's ambassador forthis year.
One of the tasks of this 36,000plus strong organization at

(28:22):
least based on the attendeesthat would have the national
meeting this past weekend was togo out and influence change
into how we do hematologynationally and globally, and one
of the jobs as an ASHambassador that I've taken very
seriously is to start with thatchange within my healthcare

(28:42):
institution.
When I say healthcareinstitution, it's the medical
school, it's the school ofnursing, it's the school of
behavioral health.
All the trainees that arecoming out should have an
opportunity to hear andinfluence change.
So when you talk about, hey,the textbooks are probably going
to take 10 years to catch up towhat you and I are seeing in
the field it does also startwith the people who are going to

(29:06):
be reading and practicingmedicine out in the community.
That's right.
So a special interest group forhematology trainees has been
created at our institution andwhile I was expecting that
through the ambassador by beingan ambassador, I may be able to
attract five or ten medicalstudents or trainees on campus,

(29:27):
nursing students, behavioralstudents that number has
ballooned up to 66 people justthis year alone who want to
learn more about hematology,want to learn more about
hematology and advances inhematology, advances in
hematology, providing anopportunity to create 66 more
advocates who will hear from methat, while we are talking about

(29:49):
hemophilia, please take fiveminutes in an encounter, if
you're in an emergency room oryou end up being a dentist, or
you end up being a nurse caringfor a person in an urgent care
or an inpatient way, just to ask, hey, what about you?
What about mom?
And I think all these babysteps, I think eventually will

(30:10):
lead to us for us to move into aspace where there is equal
representation.
Yes, additionally, as the roleof a community advocate that
your community sees as the faceof somebody who takes the
conversation seriously.
We have, and I think, a greatopportunity here to address our

(30:33):
multilingual patient population.
I come from a state where Ipractice which is a potpourri of
cultural mix, whether it'sSoutheast Asians or Hispanic
population or people from theMiddle East, each having their
own cultural nuances and pointsthat may or may not be very

(30:55):
touchy when you discuss.
So my background, with havinglived in three different
continents, lived and worked inthe healthcare field in three
different continents, lived andworked in the healthcare field
in all those places, has taughtme one thing if anything else is
respect beyond anything elseHaving completely no judgment,

(31:27):
no encounter or perception whenhaving a discussion with a
person of a different culturalsensitivity is really the real
big door that opens you.
I'll give you a story of afamily member being referred for
severe bleeding, to a pointthat the hemoglobin had dropped
to scaringly low levels in thisperson, who by default gets
referred to the hematologist,walking into the room.

(31:49):
Knowing the ethnic backgroundfrom the Southeast Asia country
that this family belonged, Iknew at that point that I had to
be very careful in talkingabout bleeding in girls.
This is that part of the worldwhere blood is considered sacred
.
Blood is considered or equatedto life.

(32:11):
Somebody that loses excessamount of blood is looked down
upon because it is equated withless of life.
Translated in simple terms dueto my cultural journeys globally
and my continued engagement inthese countries and trying to
bring some level of awareness,this is something that I had

(32:33):
picked maybe 15 years ago.
But when faced with thissituation and seeing the
resistance and even getting tothat appointment, walking into
that room with everybody sittingcross-legged and not wanting to
share, I knew there was adifferent conversation I needed
to have to break through and I'mhappy to report three members

(32:56):
of that family are onprophylaxis therapy today.
Wow, family are on prophylaxistherapy today, from acceptance
to getting the tag being put onsay hey, you have a bleeding
disorder, and going through thestages of grief, which is
acceptance, and anxiety and fear, and then denial all those
stages in that order and theneventually saying yes, this is

(33:18):
something that we will accept,label ourselves with and seek
cure for it to better our lives,because we are not in that
cultural foundation anymore andwe'll go out to our church on
Sunday or Saturday and talkabout this and become a champion
for it.
I think it's really how wechange behavior, both from the

(33:40):
academic level, where newtrainees are coming out, and
also in the societal level, byshowing respect.

Speaker 1 (33:47):
The level of empathy and psychology that it really
requires for you to be able tohelp to know how to maneuver
against those, you know,intrinsic biases, if you will,
that are that are sort of, youknow, create walls for all of us
, and it does, you know.
I mean we'd all love to.

(34:07):
I mean I think there's a lot ofpeople out there, especially
people with a large amount ofempathy.
Naturally, you know, feel likethat everybody needs to be just
on neutral standing ground.
But we, but to recognize thatwe all have different
backgrounds and pasts and we allhave different belief systems
and cult.
But the cultural sense of that,I think, is something that is
like an awareness of its ownthat really doesn't have

(34:30):
anything to do with the biologyor the science.
I think sometimes we can get sofocused on the mechanics that
we almost miss the environment,focused on the mechanics that we
almost miss the environment.
But the solution sometimes isconnected to having an
understanding of the environmentso that you can address the
mechanics, and I was recently.

(34:51):
We just had our Hope Conferencerecently and there was a person
that came that was talkingabout their religious background
that they had contextuallygrown up in, did not allow them
to take blood products ground isthat they had, you know,
contextually grown up in did notallow them to take blood
products and one of the and sothey suffered great deal in
their early years as a result ofhaving a bleeding disorder and
and it was, it was devastatingto their physical body and and

(35:12):
their life was at risk and allof these things and well, at
some point a physician was ableto sit down with them and
explain to them recombinantfactor and that there was no
human element in it, andactually unlocked a whole, you
know, a whole world of solutionsthat they didn't even know, you
know, were possible, but ittook a, it took someone sitting
down and trying to understandbefore they tried to give them

(35:35):
the solution.
And and I I just think, man,that the fact that you're
training 66 other physicians tothink that way now and to see
the level of change in people'slives as a result of that is
really where the rubber meetsthe road.
I think it's nice to say that,yeah, we should do that too, but
it's not an add-on, it's not asupplement.

(35:56):
That attitude and perspectivefor all of us no matter.
I encourage patients all thetime.
It's like we got to givetreaters a break.
I mean, you know like you canget mad sometimes that they're
not doing it, but they got tosee all these people and they're
managing all these tensionsconstantly and there are.
They're getting pushed back too.
I mean, you know, we, we needto give each other grace in
every, no matter what seatyou're sitting in, no matter

(36:16):
where you're at in life, nomatter what your background is.
But just being able to lowerthose guardrails down just a
little bit to have thatconversation is where real
change can take place.
And it excites me about thefuture because, exactly right,
the literature may take sometime to still catch up, but if
we can illustrate it in realtime and other people can

(36:37):
observe that change happeningrapidly, where it's not just
about slight improvement, it'sabout complete and total rescue,
if you will, of people who aredevastated by these things.

Speaker 2 (36:48):
And it's so inspiring to hear you talk about that.
You have to see, this issomething that you are doing, it
at your end.
I'm doing in my little nookwith my little energy and effort
.
But organizations, nationalorganizations, whether it's
people coming out of the MESAguidelines or American Society

(37:10):
of Hematology that has empoweredand given platforms for people
like us International Society,thrombosis, hemostasis, world
Federation of Hemophilia thesenational organizations have gone
beyond just pure academics,have gone beyond and saw the
value of creating andinfluencing culture.

(37:32):
I think all kudos to them andcolleagues of ours who are at
that stage that they canactually bring out influence in
the community.
I think it's very powerful andI think we're just playing our
part into this bigger scene.
The second thing I'll say tothe fact that what has really

(37:53):
happened is a good start, butyou know, talking about specific
examples of what we do need togo, what, what?
The mesa act 2.0, the nextguideline piece, I think, on the
ground, challenging, uh, oureffort at getting therapy to
patients, are structuralbarriers, whether it's insurance

(38:17):
company denying thosemedications, whether it's the
insurance companies denyingthose medications, whether it's
the insurance companies orpharmaceutical companies not
having guidelines or policies tosupport a prescription or a
random or a radical idea thatone may have to offer care to
women with bleeding disorders ormild and moderate hemophilia

(38:37):
patients who are sufferingsometimes more because they have
never been offered prophytherapy.
I think we have a chance ataddressing and improving our
current state of affairs,current guidelines, in maybe two
examples.
One would be involving mentalhealth and empowering or

(39:00):
creating or mandating in thesenational guidelines the very
powerful need of having, orcenters having as an essential
item some form of a mentalhealth access to patients,
something that gets commonly uhuh and I see it all the time in

(39:20):
hemophilia centers that I get tovisit not be present in an
active role physiotherapy,dentistry, social work
absolutely essential for everyperson with hemophilia.
But I think, in the currentsocial times and the
polarization we find ourselvesin, I think the power to address
anxiety, depression and thefeeling of feeling left out,

(39:48):
specifically upwards of 20 to25% of people with hemophilia A
reporting that these are issuesthat affect them on a daily
basis.
Percentages of anxietydisorders, depression disorders,
basis percentages of anxietydisorders, depression disorders

(40:08):
leading to ineffectiveness ornot having enough effectiveness
of their prescribed therapy,chronic pain leading to opioid
use leading to dependence All ofthat ties into an opportunity
which I think MESAC and allother guidelines have to
incorporate in improving centersto get that idea that this is a

(40:29):
priority item.
I would also say leveraging thepower of genomics.
Many a times when we writethose scripts and we get those
denials of prior authorizations.
One of the things that hasreally empowered me in the
community and then to go out andadvocate it globally is to
finding the genetic basis ofdisease.

(40:50):
We have gotten really good overthe past 10 years in
identifying.
How do we do whether it's afemale who has hemophilia, a
carrier status or a vonWillebrand disease patient with
severe von Willebrand diseasestatus?
Not by just relying onconventional factor levels.
Right, because they fluctuate.

(41:11):
Right, they go up and down.

Speaker 1 (41:13):
It's an X-linked chromosome issue.
I mean, at a fundamental issue.
If you see that there's amutation, you have it, yes, and
so the factor levels almost canbe okay, that's how we're going
to address a treatment plan.
But that's not really.
Do you have it, do you not haveit?
Which is where the formularyissue on an insurance
reimbursement level reallybecomes a problem.

(41:34):
But that's amazing.
That's amazing.

Speaker 2 (41:36):
And with hemophilia, yes, whether you have it or not,
an X chromosome with vonWillebrand disease, it's
multifactorial, it's notX-linked, it could be autosomal
dominant or autosomal recessive.
Suffice it to say we havegotten good at commercializing,
or commercial tests have gottengood at becoming accessible to
us.
Oh, that's so good, not justthe hemophilia treatment centers

(41:57):
, but non-HTCs that care forhemophilia primary but non-htcs
that care for hemophilia primarycare offices and physicians.
So what we are empowering our atleast in our community is
asking our people a referralbase to think about doing
genetic testing right.
I also have the good fortune oftaking care and maybe
influencing care in our area foranother genetic disorder, which

(42:20):
is sickle cell disease, whichaffects disproportionately the
disadvantaged population,african-american and Hispanic
population in the United Statesand globally.
By the way, people of colorNewborn screening screens people
with severe sickle cell diseaseright off the bat.
So a person born with severesickle cell disease gets a

(42:42):
little in the mail at four weeksof life, within four weeks of
life, and that's because it canbe tested on the blood pad.

Speaker 1 (42:48):
It's easy to do, yeah , it doesn't have to be a
centrifuge and the laboratoryresults can be done on a very
heel stick sort of basis.
That's one of the things thatwe found sort of in the rare
disease work that I've done onon some of these advisory
councils is that you know,unfortunately some of the
bleeding disorders, likehemophilia, for an example,

(43:09):
can't be cause.
It's got, it's a little bitmore in depth.
They need.
They need a volume to be ableto test for that.

Speaker 2 (43:13):
But but genomics, yeah, but you Sickle cell
disease I mean it's a solubilitytest, Whether you have it or
not is now tied in with genomics.
Every person in the UnitedStates that gets born with
severe sickle cell disease, thatgets tested on that little heel
prick before the baby thatleaves the hospital, has now
access through that program andthrough that sensitization

(43:37):
bundled with a gene at least inCalifornia for genetic
sequencing.
So by the time they get to me,within the first month or two
months of life, they alreadyhave a diagnosis of sickle cell
disease and a genetic sequencingdone for them and then offered
to that to their parents.
Because it takes two carriersto make somebody with sickle

(43:57):
cell disease.
And if you have done that for acondition like sickle cell
disease, I don't see why weshould not do that for bleeding
disorders, A disease like vonWillebrand, which is prevalent 1
in 100, sickle cell diseaseaffects 1 in 365
African-American people.
If we just compare the numbersand not just one ethnic race or

(44:18):
subpopulation, every person inthe United States one in 100 is
incidence of von Willebranddisease.
I think we can do populationhealth better.

Speaker 1 (44:27):
Do you think there will ever be a time I mean in
our lifetime where we could seethat?

Speaker 2 (44:32):
you know, hemophilia von Willebrand could be we have
just put it out in the universetoday, hoping that this will
translate somehow to stick and Ican only just hope that uh,
getting this messaging out moreand more at every platform that
we get.
If there is a disorder thataffects 100 persons in united
states and we are not screeningthat, at birth.

(44:55):
Yes, maybe we should think aboutdoing that, because it's not
just that one person, it's theentire healthcare enterprise,
cost-benefit analysis, et cetera.
So I think this is a and againto that point.
I think diagnostics and testing, conventional reliance on just
factor levels, may not be enough.
So the future guidelines shouldinclude genomics or genomic

(45:19):
confirmation somehow in bothempowering physicians to write
those scripts and not be denied,and also for patients to have a
closure in knowing the geneticspaces of their disease and
knowing what is the root causeof their problem.
I think it's valuable any whichway you look at it.

Speaker 1 (45:40):
I love that.
There's so much more to be done.
I want to touch on two things,maybe quickly.
I know our time is maybe comingto a close here, but iron
deficiency always seems to besomething that is sort of a
mystery, but yet still we'rediscovering how that plays a
diff.
There's so many things thatiron efficiency plays a role in.

(46:00):
Is that something that you seebecoming somewhat of a leading
indicator to realizing thatanemia could be a leading, I
mean, could at least be anindication that more
investigation needs to be donefor a female especially, or
maybe someone that's even mildas a male, but someone that is?
Do you see iron deficiencybecoming more of a qualitative

(46:22):
investigatory element?

Speaker 2 (46:24):
Yeah, I think and I would actually go one step
further, and this is somethingright off my slide deck that I
give to my medical students andtrainees is iron deficiency
without anemia.
Iron deficiency without anemialong before iron deficiency

(46:46):
surfaces itself to become anemiaa problem that has already
caused symptoms in people.
Iron deficiency without anemiais where we need to strike and
there are easy ways.
A simple cbc, simple bloodcount, can give you the links to
it For any well-trainedhematologist, somebody who's
done enough work in hematology.

(47:06):
Looking at just a simple,complete blood count, you can
make an ascertainment to somelevel of certainty that which
direction this person may begoing may be going.
They may not have the officialcutoff of hemoglobin drop below
11.5, which is when they getdiagnosed with anemia and then
get a referral to a hematologistor a script for iron.

(47:28):
Just seeing the other metricsthat are right there in that
report and identifying peoplewith iron deficiency without
anemia I think is a lowerhanging fruit for our people
with bling disorders.

Speaker 1 (47:41):
Very interesting.
Is that something that you feellike is?
Does it?
Oh well, let me ask it this wayDo you feel like you have to
have two CBC reports to be ableto see where the changes are
occurring, or is that somethingthat you can detect just from a
single draw?

Speaker 2 (47:56):
I think starting out with most people as part of
their annual health workup, geta single CBC, yeah.

Speaker 1 (48:03):
You would need to see the record to detect it to some
degree and as an earlyindicator.

Speaker 2 (48:08):
As an early indicator .
Absolutely, when it does becomeiron deficiency anemia, when
the hemoglobin is actuallydropped and has basis of iron
deficiency as its root cause.
Yes, absolutely, we should beinvestigating right there.

Speaker 1 (48:23):
And be treated right away.

Speaker 2 (48:24):
That could be done earlier if we saw iron
deficiency, even Because thereis plenty of data that shows
that more than six months ofiron deficiency or empty iron
stores by the time somebodybecomes goes from non-anemia to
anemia state.
You've lost enough iron in yourbrain that it permanently
affects your cognition and IQpoints.

(48:46):
There is an actualquantification available, both
in mice studies and humanstudies, that show the duration
of iron deficiency directlyproportional to the sometimes
irreversible outcome incognition.
What Absolutely?
And iron deficiency?
I can talk three more hoursabout it, but I think the point

(49:08):
is it's the globalunder-recognized disease burden.
You know, those times whenpeople come and refer, I just
feel lethargic, I don't want tofocus and I sleep off or I can't
sleep properly.
All of those, many of those,have underpinnings in
subclinical iron deficiency.
Now you have iron deficiencyanemia.

(49:30):
You automatically get areferral, but idea is to get to
the point where those peoplewith bleeding disorders, whether
it's hereditary telangiectasias, hht or von Willebrand disease,
these prevalent disorders inour community that lead to blood
loss.

Speaker 1 (49:46):
Right.

Speaker 2 (49:47):
Two, three years before they get to the iron
deficiency stage.
If that is the point where weact by giving a six-month iron
supplementation or just advisingto do an iron-rich diet, that
can actually change the courseof how a teen would perform in
high school and off to collegeand have a career unbelievable.

Speaker 1 (50:05):
Uh and it's, it's, it's all scientific basis of
disease and so often those arebeing kind of sort of those
types of symptoms removed intooh there's probably adhd, add
something like that, let's goabsolutely 100 other type of you
know uh sort of mentalsimulation that they're giving
them some chemical to do.
But really and truly it couldbe just a root cause of this,

(50:27):
this iron thing.
I, I, you know, I I foughtreally hard in school to get a
good c average, uh, green, andso now I'm starting to wonder is
it possible that maybe I wasactually just low in iron?
I'm going to go back and talkto some of my teachers and say
it wasn't my fault, I was low iniron, I was bleeding, you know,

(50:49):
internally.

Speaker 2 (50:53):
Get your grades improved, get your diploma
checked.

Speaker 1 (50:56):
You know they grade on a curve.

Speaker 2 (50:58):
Maybe they could go back and revise some of my
grades and that's another thingyou, you know you're absolutely
right and and yeah, you'll getan honorary doctorate for that.
But going out to schools andgoing out to to to high schools
and middle schools, I do thisthing called as coffee with the

(51:18):
principal.
Oh, I love, just out of my ownvolition, and I think it's very
powerful that when you go out tothe community and talk to
principals, specificallyteachers and health counselors
in those offices that aresitting and seeing I don't know
little Tommy coming into afterPE with a nosebleed that lasted
more than 10 minutes Right, thathappened when he was just

(51:40):
sitting and doing his homework,versus jumping off of a swing in
the.
That may be abnormal.
They may need a letter to besent to the home.
Say, hey, I think your son mayneed further testing as just a
point of sensitization.

Speaker 1 (51:53):
So this is bringing to mind something that we've
talked about sort of through theyears of different things,
about public awareness, becauseI feel like there's an element
to this that is not just about Imean, I think that there's a
lot of time and energy for thoseof us who are deeply affected
by these things that we'vestarted to see.
I mean, again, when my twodaughters were born, at the time
the common knowledge was, yeah,they, probably they might.

(52:15):
We want to investigate whenthey have their cycle or they
get pregnant or something likethat.
But the carriers for sure, butwe don't really.
But we observed symptoms whenthey were four and five years
old and asked questions, butagain, the predominant.
So I think that there is thissort of effort of now where
people who are deeply affectedby bleeding disorders are going

(52:36):
and saying we've got to changethe hematologist at the highest
level of mindset, we've got toget rid of this language in the
old literature.
That's important and we'vetalked about that.
But it also brings to mind thework we could be doing with
educating maybe an OBGYN clinicor principals at a school.
I'm thinking now, having thisconversation, you and I need to

(52:58):
go and buy a billboard in everycity and we're just going to put
your picture and my picturewe're saying on your deficiency,
call me.
I mean I don't know, maybethere's some sort of like thing
we can do, but I just it makesme, it makes me thoughtful of
the idea that in some ways,working in rare disease, we can
get so sort of we can work insilos and we can get so almost,

(53:19):
almost tunnel vision, if you onjust trying to help improve the
things that we know we shouldimprove in our spheres.
But truly, maybe this is anissue we should be advocating
for in every sphere, becausethere's probably far more people
out there.
I mean, I look at the CDCnumbers We've talked about this
before.
Is it 3 million or so that areestimated to have von
Willebrand's disease?
But they only know where like30 000 of them are.

(53:41):
I mean it's some super and andthe divergence between that huge
of a number to the actualpeople that are being surveilled
is so broad that you gotta knowthat maybe if we just inform
the whole world differently,maybe we would find a lot more
people who are sufferingsilently that there is a
solution to help improve theirlives.

Speaker 2 (54:01):
A simple thing like iron deficiency.
Yeah, you know I work closelywith the countries that I had
the good fortune of spendingenough time with A simple
intervention likesupplementation of.
So the country like India, forexample.
Some of the work that we havedone in India around anemia just
anemia, because by default ahematologist an example that was

(54:24):
really powerful, that changedthings for good was identifying
how can we do rationing better.
Now the word rationing is verydifferent when it goes to
Southeast Asia context.
So most people who are belowpoverty line or near the poverty
line gets a total amount offixed amount of food that the

(54:48):
government gives them on amonthly basis.
That's called ration.
How are advocacy allowed toidentify one from a small
regional pilot to say, hey,there's 80% of young ladies in
high school that have irondeficiency in this entire region
.
And when I say small, entireregion in India, there we're

(55:09):
talking about 1.3 billion peopledivided into a small region,
that's we're talking about 30 to40 million people.
Prevalence of 80% of irondeficiency in every school-going
high school girl was thewake-up call that led to a
policy change where iron wasadded to the wheat flour.

(55:29):
So supplementation what?
Yes, a simple example like thathow science ties into public
health and how that ties intohematology and how that makes
common sense, things that canrevolutionize a small population
.

Speaker 1 (55:47):
And iron supplements are not that expensive.
I mean they've been relatively,I mean very inexpensive.

Speaker 2 (55:54):
Iron has been around for centuries, right, if not
thousands of years, where peoplehave identified that.
You know, I am a lifelongvegetarian.
I practice in a town that ishas the has been, has been
glorified as the blue zone, theonly seven places on planet
earth where people live longerbecause of a vegetarianism based

(56:16):
and active based a blue zonewhere I live in.
So when people come and expectthat iron means meat, not really
.
There are non-meat sources.
There are plenty of sourcesaround the world in our common
sense diet that can amelioratethat problem from even happening
.
When you take it up the notchand say, how do I apply this to

(56:37):
people with bleeding disorders,especially women who are
carriers and one-world brandpatients, people with bleeding
disorders, especially women whoare carriers and one-world brand
patients, there are commonsense measures which, if done
diligently on a daily basis, canactually get these people to a
much higher efficiency.
And this is something that islow-hanging fruit.
You don't need to change theparadigm, but that's something

(56:57):
that needs to go in the policiesand the guidelines, something
that has to have the next level.
I personally feel every personwith a bleeding disorder should
get an iron prescriptionhand-in-hand at the same time
when they get their factorprescriptions or at least be
screened for iron deficiency,because that is happening,
whether you like it or not.

Speaker 1 (57:16):
Well, I think there's some of these things that are
changing, even with vitamins.
I've noticed, even in my owntreatment center visits, that
every year they're coming in andsaying well, we understand that
vitamin d plays a role inassimilation of of calcium in
the bones of soon city, so weneed to make sure we check your
vitamin d levels.
I mean, I'm having tosupplement that now.
I'm getting older, now I haveto do everything.
You know my heart disease, allthis stuff you know.

Speaker 2 (57:37):
But but but the boston, california, more first
time sunbathing, you'll getsomeone, one of those blue zones
.

Speaker 1 (57:43):
Yeah, this is in and and you know we live in
louisiana.
So louisiana is, like you know,uh, cardiac arrest neighborhood
for everyone because we, we eatso poorly here.
But I always say it's hard tobe skinny in louisiana because
their food is so dang good, youknow.
But uh, but you know I can'thave anything fried anymore.
I can't have.
You know it's terrible.
But the bottom line is is thatthese, sometimes just these

(58:07):
simple measures could be notonly a way to provide solutions,
but also things that we canactually help find even more
people that are again sufferingsilently.
I think you know one of mybiggest ambitions in life is to
reduce unnecessary suffering inhumanity.
If I could do that across theboard, in people out there that
are suffering unnecessarily,when we have tools right here in

(58:44):
our back pocket that we coulddo in such simple terms and it
takes innovators like you to beable to really speak to the
science I'm just connecting thedots.

Speaker 2 (58:52):
They've always been there.
Dear physician, jonathan, Idon't have your access to your
full disclosure, to yourhealthcare records and I'm not
giving healthcare advice.
But many people with hemophiliahave been disadvantaged by
getting that label of bleedingdisorder and have been pushed

(59:14):
into the corner of physicalinactivity.
Whether you have especiallymild and moderate hemophiliacs
who have that diagnosis ofdisability, which is which is
what they've been told is thereason they can't participate in
PE or can act, be activebecause of the risk of bleeding,

(59:35):
can go on the swings, etc.
Yet at the same time, thosemild and moderate hemophiliacs
don't get access to prophylaxistherapy.
Well, that's changing Commonsense measures, like thinking
about how we impact in what wealready have and we are doing,
of addressing these issues withthose symptomatic women who with
hemophilia A mild and moderates, and having them access to

(59:59):
factor therapy.
We have terrific new factortherapies and non-factor based
treatments to stop bleeding.
Maybe mild and moderatepatients don't need all that
factor, maybe they don't needall that therapy with all that
maximum dose.
But improving quality of lifewith common sense measures, if
you already have, by thinkingsmartly and, I think,

(01:00:19):
repurposing what we have, Ithink can be the game changer
for majority for bleedingdisorder patients who are
currently in the databases butare not maybe getting access to
a factor on a daily basis.
So good, so good.

Speaker 1 (01:00:33):
I want to touch on one more aspect that I think is
important, especially for womenwith bleeding disorders, that is
, maybe they didn't start outfrom birth getting prophylactic
treatment.
I mean, I hope we see a daywhere maybe preventative
treatment is a standard of carefor even for mild, moderate and
so on.
Um, but, but you know,pregnancy brings up a layer of

(01:00:55):
complications that I don't thinkeveryone is really up to speed
on, and you've done a lot ofwork to support people
throughout pregnancy.
That, I think, is justphenomenal.
I'm just really amazed by that.
Can you speak to that a littlebit about what you've seen occur
and how you can improve maybethe process just by monitoring

(01:01:17):
and being aware of bleedingdisorder in the pregnancy
process and being aware ofbleeding disorder in the
pregnancy process?

Speaker 2 (01:01:21):
You know, this is such an important discussion to
be had both locally andnationally and I think,
internationally is when womenwith hemophilia or women with
blood disorders, or this one,willebrand and or otherwise, go
through the needs of theirobstetric care.
One of the very importantaspects is how do we find bundle

(01:01:44):
care and that's something thatI've pushed for and I think is
going to be and should be in allthe guidelines to find an
opportunity to, if not mandate,at least recommend strongly to
have a bundle care communityprogram.
I love that.
It doesn't have to be a hardshot obstetrician, a high risk

(01:02:06):
OB, to be part for you to becomea partner.
It could be a midwife, it couldbe a doula, it could be
somebody who you can delegate towhen it comes to continuity of
care, so that you can find apartner in tandem to work with
to have that perfect pregnancyoutcome.
As is, women with bleedingdisorders suffer through severe

(01:02:31):
postpartum hemorrhage.
About a quarter of pregnancieswith hemophilia A women with
hemophilia A, specificallysymptomatic hemophilia A, have
severe complications frompostpartum hemorrhage and from
cesarean sections and excessivebleeding from that.
And not many women get accessto a factor, despite many times

(01:02:53):
them shouting in the first visitwith their OB saying I have
hemophilia.
So instead of going backwardand saying, hey, we need to
educate more OBGYN, I think weneed to find, in whichever space
we are and I think this is moreof a structural comment that
I'm making to find a bundle careprogram or bundle care for a

(01:03:13):
community.

Speaker 1 (01:03:14):
A wraparound, holistic approach.

Speaker 2 (01:03:17):
Absolutely, and, I think, with inclusion of
important stakeholders that willbe present when the time comes.
Constant monitoring of factorlevels during pregnancy, because
of the severe physiologicfluctuations that estrogen and
progesterone in pregnancy bringsabout, I think, is the second

(01:03:37):
important point for anyhematologist, even if they're
not career hemophilia doctors.
I think caring for somebodythrough pregnancy is a very
nuanced field, um, and I think,if nothing, getting a couple of
doses of prophylactic factors,prophylactic iv factors, in
their households for thoseemergencies when the water

(01:03:58):
breaks or from early, earlylabor sets in or when unplanned
cesarean section happens, can bethe difference between life and
death, both for the mom and forthe baby, because I think
pregnancy outcomes directlycorrelate with the experience of
childbirth.
I've had women who've come intoour hemophilia a clinic, or

(01:04:20):
hemophilia clinic or bleedingdisorder clinic, having to come
to get clearance forhysterectomies as the reason for
their visit.
Upon probing further, it ispretty evident that they have
lost hope because of a negativeexperience that they've had that
they only see the only way tomove forward is to get rid of an

(01:04:44):
opportunity to have for thechildren, and I think that's
extreme, but it happens allaround us and I think that is
something that is easily fixable.
So to speak to your point abouthow do we do this better
systemically, I think bundlingcare even if it's not the top
level experts, but at leastpeople who are inclined, who
identify hemophilia needs to bemonitored.

(01:05:06):
One-world-brand disease needsto be monitored throughout
pregnancy.
Just like prenatal visitshappen, hemophilia visits should
happen.
And, additionally, asclinicians, monitoring the right
levels and making sure thepatients have access to factor
during that nine-month periodwhen anything can happen, I

(01:05:29):
think are two things that havereally revolutionized at least
my region, where a person withhemophilia or a woman with
hemophilia or one of the otherdiseases absolutely top of the
list on the list when it comesto high-risk pregnancy.
A consideration for high-riskpregnancies, I love that.

Speaker 1 (01:05:46):
I love how much priority you give to that too,
because I think so often itdoesn't raise the alarm, it
doesn't register, even withinthe specialist world.
Sometimes it doesn't alwaysseem to be the highest priority,
and I don't think I reallydon't, you know, blame anyone
for that, I just.
I just do think, though, thatit's important that the, as we
learn more, we need to apply ourlearnings, and our learnings

(01:06:10):
are that there are.
You know, I, I will, I probablywill never forget a moment that
I had with one of the leadingtreatment centers in the country
.
I had the head nurse carecoordinator tell me one time and
this is probably 20 years agonow.
She came to me and she was juststarting.

(01:06:32):
She had just starting torealize that there were so many
people, thousands and thousandsof women in her region that were
having hysterectomiesunnecessarily.
All they needed was just alittle bit of factor or a little
bit of care from a hematologistand they could have had an
outlook of having a full.

(01:06:54):
I mean, these are women thatwanted family, they wanted to
have their own children, andthey were forced into having
that, recommendation being theonly option, just not knowing.
It was a lack of information atthe time.
But this particular nurse carecoordinator was devastated when
she learned that there wasthousands of these occurrences

(01:07:14):
happening in her own region,that all they needed was just a
little bit of information, thatthey could have gotten a little
bit of care in their monthlycycle or in their I mean
teenagers, you know, youngpeople, you know this was
happening all over the broadspectrum, and so the devastation
that she felt in that momentwas the first time that I had
ever even heard, and I think Ihad maybe a couple of kids at

(01:07:36):
the time.
One I know, my daughter, wasborn at the time.
She was just born, and it waslike I'm thinking, oh my gosh,
like I don't like.
Like you know, at that point itwas just to watch the
devastation on her face.
I don't ever want to see, youknow, that happen.
I don't want to hear that again.
Like I mean again, everybodyhas their own decisions to make,
and I'm not talking aboutpeople that are in extreme

(01:07:58):
circumstances.
I'm just talking about peoplethat you know their desire is to
have a family.
They should not be prohibitedfrom that opportunity just
because you know we have a lackof education, you know, and so
you know bringing the wholecommunity up to speed, bringing
people up to speed, andsometimes that's unavoidable
because they didn't know theyhad a history of a bleeding

(01:08:18):
disorder in their family, sothere would be no information to
begin with.
But if you have information atsome point, like being able to
get monitored and get checkedout as a person that is wanting
to plan a family or somebody,and that could start at a very
early age it doesn't have to bewhen they're 25 or just married
or whatever.
It could be that they'relooking at 15, 16, 17, 18 years

(01:08:40):
old, and one of the reasons oneof the initiatives that we've
taken as an, as a organization,was this is such a priority to
us.
We actually have just in thelast I guess he's been on our
board of directors now for thelast three years as an OBGYN who
we just recently did a podcastinterview with Dr Biven von
Allman and his.
He's very passionate abouttrying to help OBGYNs really

(01:09:04):
have a revelation ofunderstanding because he himself
in his practice was doingsurgical emergency operations
and oftentimes he discovered vonWillebrand's disease in his
practice in the middle ofsurgical procedures.
Sometimes Absolutely.
Getting results back Happens allthe time and he was devastated

(01:09:30):
to find out that there was justa little bit of treatment that
could have been applied and theycould have avoided the whole
emergency.
Absolutely Happens all the time.
So I'm excited about you know,as we learn, we need to apply,
and that goes across the boardfor us as a patient, for a
provider, for the industry, forthe community, for the larger
things at work here.
But you know, I'm so inspiredby what the work that you're

(01:09:53):
doing, and I'm so inspired byyour passion and your heart for
people and your dedication.
You have more energy than I doand your dedication Um I, I you,
you have more energy than I do,and and, and and, so motivated,
and every time I call you,you're in the middle of like
transitioning walking out of me.
It's amazing.
I'm like I don't.
You're like the energizer bunnyyou never stop and um, and I'm

(01:10:16):
so motivated, though, by yourpassion to to continue to change
every environment, from theprovider side to the formulary
side, to the system.
All of us, I think, know thatthe system has problems and it's
a matrix of problems, but itstarts with people who care, and
it starts with people who areintentional, and it starts with

(01:10:37):
people with passion who aremotivated to make change, to
reduce unnecessary suffering,and so thank you for all of the
work that you're doing.
I know that there's probablythousands of patients that
haven't had the opportunity tothank you already, but there's
many who are listening to thisepisode right now and thinking
man, I just wish I had anopportunity to have access to
this, but I know for a fact weheard today that there's 66

(01:10:58):
doctors that are learning fromyou right now, that are going to
go out into the world, and Ibelieve that there'll be
probably hundreds more beforeyou're done, and so maybe
thousands.
You're changing things not onlyin the US.
You're changing thingsinternationally.
We didn't get a chance to talkabout all of the work you're
doing globally, but I trulybelieve you will be one of the
leading voices for change in thebleeding disorders community
globally for many years to come,and I'm just thankful to call

(01:11:23):
you a friend.
I'm thankful for your time withus today and thank you so much
for the important work thatyou're doing for people every
single day.
It matters to the infinitedegree and we're so grateful.
So thank you so much.

Speaker 2 (01:11:34):
Thank you for having me, jonathan, and giving a
platform to share with yourmembership and people watching
about how much more we have todo.
And also, as I said before, it'sperfectly fine to be imperfect,
because once we expect andaccept that imperfections are

(01:11:56):
human, I think that's reallywhere we start making men's, and
I believe that personally and Ithink it applies globally.
And what you are doing, whatHope is doing, is equally, if
not more, important than what Ido every day in a clinic,
because you are going out to anaudience which is much larger

(01:12:21):
than I may have, always, at anytime, may have access to it and
given Peter time, and I thinkthat change that can bring about
by empowering people toself-advocate I think is just so
powerful because it makes myand colleagues like me who are
practicing around the world.
It's very easy when people comewith already energy and

(01:12:42):
strength and have alreadyprobably gotten over the sadness
and the stigma of not knowingthat they can talk about this
openly.
So thank you for having me andhere's to many more to come.

Speaker 1 (01:12:59):
I love it.
Well, thank you so much forlistening to this podcast and
for everyone taking a minutejust to download this.
If you would just leave acomment or give us a reply.
Also, if you have any questionsfor Dr Jane or anything we
talked about today, you canalways email us at info at
hope-charitiesorg.
As an organization dedicated topatient advocacy for people with

(01:13:21):
bleeding disorders, we are sopassionate about making certain
that we address the real needsof real people with honest and
open and vulnerableconversations as much as we can.
So thank you for the investmentthat you've provided by
listening to this.
It helps us be able to do moreof it.
We also want to say a big thankyou to our episode sponsor in
the series of this Women's forLiving with Bleeding Disorders

(01:13:43):
series, genentech.
We're so grateful for theirsupport for allowing us to
provide more educationalopportunities and content like
this.
Thanks so much for listening,and please share this with one
of your friends or familymembers, maybe somebody that
you're trying to help educateand learn about within your
family that may need to knowmore information about what
you're experiencing every day.

(01:14:03):
This is a great conversation tostart a deeper conversation of
understanding for all of us.
So thanks so much for listeningand joining us today.
We look forward to seeing youin the next one.
Take care.