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>> Just a time check.
My watch is two o'clock.
Is my watch fast?
A little bit.
Okay.
All right.
>> So I'm going to start, my name is with Winnie Chung with the centers
for disease control and prevention.
-- I'm going to show you a unique story, the cohorts of children we have
been following we literally has been following them since 1982 until now.
So a lot of these kids are actually reaching the age of 25.
And if you look at some of the published CMV research rarely, literally
none.
No research has such a long follow-up.
Right now we're waiting to get the adult audio logical evaluation come
trickling in, this cohort of kids, a lot of reaching age 25.
This is my disclaimer and this is the disclaimer I have to use for CDC.
So an estimated 28,000 infants are born with CMV, every year.
And 90% considered asymptomatic.
So 25,000 of them are asymptomatic.
10% are symptomatic, easier to spot.
In 2014 published a systematic review, systematic review means for such a
low incidence, low incident disease, sometimes when you do review and you
do a systematic review, they go back and look at published data.
Any of these published data of high quality have are the actual published
data into the table and systematically they take the raw data recrunched
they will, combined them and recrunched to make a new conclusion.
So that's systematic review.
It's not just a review of all the studies, numbers actually combine to
recrunch to get a new conclusion out of it.
Guiterrez in that paper said 10% of the children that are asymptomatic at
birth will have sensory neural neural loss.
A-- sensory loss.
40% have severe to profound degree of hearing loss.
Now, personally think there's a couple of limitations on the systematic
review.
One, the studies median follow-up range is 18 months to seven years.
So some of these so called longitudinal study, the short is only 18
months.
Longest is seven years.
It is it is extremely rare that children followed up to adolescence.
And also because I'm an audiologist by training and my other colleagues
that we sort of like connected at Houston, they're not audiologists so I
look ad these data a little bit differently from them.
Because they're epidemiologists so magnitude and impact of disease
matters to them.
Now when we look at a lot of the studies being reviewed, we noticed that
a lot time the two years, there's sometimes only the better year result
is actually shown and tracked actively.
So as a result it is a possibility that the magnitude of the problem
could be underestimated.
And also in unilateral hearing loss sometimes the studies literally
overlook the normal hearing ear so when the normal hearing ear developed
to have a hearing loss they're not even aware of it.
So that's another estimation that with this longer term study we're going
to be able the to show you.
So our premise, since we follow these children and some of them are up to
18 years of age, so I would like to show you the point prevalence that we
calculated from this cohort and also the hearing loss characteristic
throughout this 18 years study.
Okay?
So it began in 1982.
Houston was funded by CDC, it's not EHDI team funded, this is actually
funded by national center on immunization and respiratory diseases.
During this time, they actively enrolled the children and do urine
culture at three days of life to find out if if they are CMV positive.
And the definition of of asymptomatic infection is basically this is
accepted by CMV research community, meaning that the newborns cannot have
all these symptoms.
Petechiae is pinpoint round spots indicative of bleeding and -- oops.
I need my little red dots right here.
And the hepatosplenomegaly is enlargement of the spleen and liver and
microcephaly, everybody knows what that is, thrombo cytopenia meaning low
blood palate count.
So for asymptomatic children the the definition is the baby must not have
all these symptoms at birth.
And then this pool of kids we literally follow them audio logically
through time.
And many of them have reached 18 years of age.
Okay.
Now, before I go and explain to you some of the results we're getting, it
is important that I explain to you the definition used because definition
of delayed onset hearing loss and congenital matters a lot, when we
estimate magnitude and impact of this problem.
First congenital hearing loss in this cohort we actually have to make a
very definitive definition and this is a definition that we use.
We call them as definitively having congenital sensorineural hearing
loss, when ABR done at three months of life is indicative of a positive
hearing loss.
With we will presume them having congenital hearing loss, the if ABR
positive hearing loss occurs between three to 12 months of age.
Delayed onset hearing loss this is our definition, any previous record
normal hearing and later on, you have a hearing loss diagnosed obviously
that's delayed onset hearing loss.
Also with the first ABR done is added age one year in this case we
consider them as delayed onset hearing loss.
Because the time of diagnosis is too far away from birth.
Again sensorineural hearing loss we followed ASHA criteria to judge the
sensorineural hearing loss, anything greater than decibels hearing loss.
We use other classification, standard bilateral unilateral hearing loss.
We also try the categorize the change pattern because this is a long
duration sturdy, it is important.
Now, change, this is where we run into, I will show you later with the
results of that, how you define change, a true change, also affect the
estimation, the magnitude of this problem.
Now, we also again follow ASHA guideline for the change.
In this case the ASHA guideline is toxicity monitoring for chemotherapy.
We choose to use this criteria to judge a true change in hearing because
we find autotoxicity management on when the kids -- when adults an kids
are going through chemotherapy, are much more sensitive in picking up
hearing loss that is true, is a true change, because they have to be very
sure it is a true change and then have to change dosing on the
chemotherapy.
So as a result our rationale is we're going to use this to look at and
codify true change in this pool of kits.
And some of -- to capture how the hearing fluctuates over time we have
four categories that we actually put them in.
Progressive, meaning the overall steady decrease in hearing over time.
With low intermittent improvement.
Fluctuating progress, deterioration over time, however, we see a slight
improve in between.
Fluctuating, non-progressive meaning that the first hearing test and the
last hearing test again cuts the data point of a lot of them up to 18
years of age.
The first and final hearing test is the same, no change.
And in between we see small fluctuations in hearing and obviously stable
meaning that the first and the last hearing test is no change and we're
not seeing any fluctuation.
So those are the four terms we actually try to describe in hearing over
time.
Why go to such length to define change?
Because these kids hearing do
fluctuate.
And for a longer term period of follow it depending on when I freeze or
cut the data for analysis.
Sometimes I will see a stable hearing, sometimes improvement in hearing,
sometimes a deterioration in hearing.
So it depends where you cut the data.
So I'm going to show you the actual results.
Now, when these kids, a lot are being followed up to 18 years of age, so
we have median 8 hearing test per subject.
The range is from one hearing test to all the way to 17 hearing tests.
And the first evaluation is typically done in median age done at two
months of age, again, the range is four days old.
Ear going to have the first hearing test done, all the way up to 11.5
months when they actually get their first hearing test.
Last evaluation we lost six children, at the last evaluation the median
age is 17 years of age.
So 95% of of this cohort I'm reporting to you, at the end when we cut the
data and analyze it, is at nine years of age or greater than 9 years of
age.
And we call the systematic study, the longest term -- longest range where
some of the studies are are following, only seven years.
So we started off with 92 newborns tested positive for CMV and not
symptomatic.
Nine of them have congenital sensorineural hearing loss one bilateral and
eight lateral.
That's first.
I'm going to show you 83 normal hearing kids over time.
So 83 we lost six.
So over time and close to where we cut the data point like for some of
them 18 years of age, 11 of them fully developed sensorineural hearing
loss, delayed onset, eight bilateral -- three bilateral, 8 unilateral.
Now 58% of this cohort, this one, 58% of of them hearing loss was
diagnosed between a 5 to ten years of age, 58 represent how many kids?
So 58% is five children.
So five children was actually diagnosed between five and ten years of
age, 36% which is four kids, the delayed onset hearing loss diagnosed
between age 11 to 14 years.
One child diagnosed at 15 to 18 years of of age, as you see, depending on
how long you follow these kids, you can derive on a slightly different
percentage and will estimate the magnitude and impact of this disease on
hearing.
So I'm going to further talk a little bit about this eight unilateral
hearing loss.
So five of them developed delayed onset hearing loss in a normal ear.
The other three remained unilateral up to over ten years long follow-up.
Now, among this five, four was diagnosed after age four years and only
one diagnosed at age three months, meaning that their hearing loss,
majority of them with the unilateral hearing loss where normal hearing
gradually lose hearing the majority occurs after age 4, so if you have a
longitudinal study and you follow these kids up to only three years of
age, there's potential you are underestimating the impact of this
disease.
So I am going to put the numbers back and now giving you the percentage
based out of the original 92 that we enrolled in there.
Initially we have congenital sensorineural hearing loss initially picked
up in nine kids.
And then after following them for some of them approach 18 years of age
we picked up another 11 children.
So in total, when we cut the data points at this particular age when some
of them reaches adult, adolescence, we have totaled 20 kids, have delayed
onset hearing loss, and totally have in total have hearing loss.
That's 22%.
Now remember, GODEREZ (phonetic) in the systematic review he estimated
10%.
And with we have 22.
And what the biggest difference is the long time period that we are
following.
Something else too.
There's some other reason why we are a little bit different.
I'm going to actual hi look at the -- actually look at the percentage
looking at the 20 as a denominator.
-- denominator.
When I use the denominator 20, the total pool of kids to have hearing
loss, some follow hearing loss what they ear initially born -- they're
born with a hearing loss and or later developed hearing loss, as the
denominator.
So if we define delayed onset hearing loss as a change from normal
hearing only, only, meaning that we have to put aside all the enrolled
kids because they don't have normal hearing so they don't fit this
definition.
So if we take away all unilateral hearing loss and not look at the normal
ear how it change over time, okay?
We are only going to be picking up -- you are going to actually counter
11 kids in pool so 55 a% of them will fit that definition of delayed
onset hearing loss.
Now, if we actually tweak the definition to basically say any change in
hearing, any, so in a sense that all the unilateral hearing loss kids
have to be put back in the queue because they were normal ear, one ear,
and you need to track them too.
If we bring them back with we got 16.
Meaning that 80% of this 20 kids actually have a change of progressive
hearing loss.
So as I have said a number of our kids like 14 further had delayed
hearing loss, later diagnosed later than four years of age.
So you see a slight change in definition, really changes the percentage
and magnitude of this problem.
How does the hearing look over time?
So this is what I'm seeing.
Not a lot of these kids have stable hearing.
Majority of them their hearing goes up and down and then you see a
gradual decrease in hearing progressive.
So that's what it look like over time for over ten years long follow-up.
Let's actually compare this with GODEREZ (phonetic) study.
Remember he in a systematic review he said his estimation of total
sensorineural hearing loss in children diagnosed with positive CMV and
asymptomatic, he estimate 10%.
Our estimation is 22%.
And our number for bilateral and unilateral hearing loss is more or less
the same as GODEREZ.
Want to look at first the delay onset.
GODEREZ estimated delayed onset hearing loss only 9% of the population of
all 37 studies that he has seen.
And recalculated and when we calculated using this 92 kids and have such
a long follow-up time, we notice that our percentage is 55 to 80%, as you
can see depending on how you actually tweak the definition, it could be
55, it could be 80%.
And our progressive and fluctuating ises is a little higher -- also a
little higher because we follow them longer.
We are catching more fluctuations in hearing and another reason why we
actual seen our number higher is also going back, you remember I was
talking about we're using an autotoxicity monitoring definition of true
change in hearing.
A lot of the studies reviewed by GODEREZ they use a more general
criteria.
Generally in a case that that child have to have a lot of hearing change
in order for the research to say yes, this is real hearing change.
So that's why how you define true change sometimes can affect -sometimes can affect how many progressive and fluctuating hearing loss
can you actually see.
So we actually have less than GODEREZ, again, this is actually because of
definition.
A lot of these studies and lots of current CMV study was mostly done by
epidemiologists.
And they're not audiologists so hen they actually estimate degree of
hearing loss they don't use ASHA category.
So that results in 60-decibel, ASHA calls it moderate hearing loss and
many researchers call 60 DB as severe hearing loss.
So consequently of course most of the studies that reviewed by GODEREZ is
going to say yes we have more severe to profound hearing loss kids just
because of the fact 60 DB is defined differently.
Now, can we predict which asymptomatic will have delayed onset hearing
loss?
I think we can using such a long time period.
Now, so we -- in this table we divide the kids into two Potts.
One that has congenital unilateral hearing loss, bun with abnormal
hearing.
These kids CMV positive, asymptomatic at birth and they have been
followed, some of them followed up to 18 years of age.
If we look at bilateral -- of age.
If we look at bilateral ear, total 77, 11 further developed hearing loss,
delay on hearing loss.
-- onset hearing loss.
Only 11.
If we look at congenital unilateral hearing loss we have 8.
Five of them developed delayed onset hearing loss in a normal year.
63%.
So we calculate the relative risk and we got the conclusion that children
with unilateral congenital hearing loss have a 4.4 fold increased risk of
actually developing delayed onset hearing loss in that normal ear.
And this P value is significant.
P value in order for any researcher to say this finding is significant,
you have to are are have a P value less than 0.05.
So even when we look at such a small cohort, where we actually calculate
the relative risk, it is significant.
Now, this slide is a little busy but it's really the best way to see
these kids hearing over such a long period of time.
Let's start with -- let's start with the kids that have normal -- the
worse ear.
So this is the ear with the worse ear.
In the beginning when they were still within 0 to 20.025 of age, you see
just a few handful of them have severe to profound hearing loss, red
represents severe to profound hearing loss.
As you see over time, okay, this red, it's more and more, meaning that
lots of these kids in the worse ear is developing into a severe to
profound hearing loss.
And you see a shrinkage on the mild hearing loss category which is the
gray.
So you see that the worse ear has a lot of them losing hearing down to
profound degree.
Let's look at the normal ear on the unilateral hearing loss one.
In the beginning, when they are born, normal year, these are normal but
as early as the first year of age you see small portion of these kids
developing mild hearing loss.
Now at year two to four, a few of them develop severe to profound hearing
loss.
And you see this -- this basically hold off, what you are seeing also
that normal ear, there are more and more moderate hearing loss and mild
hearing loss popped up.
If you stretch it all the way to 15 to 18 years of age.
Someone is taking a picture.
Done?
Okay.
>> Our summary is, our preference is much higher than what GODEREZ
estimated.
That in total when you are able to follow these kids for a long time, the
total pool of of kids that have sensorineural hearing loss is actually
22%.
and among this 22% of kids literally 70% of their hearing delayed onset
hearing loss was diagnose at four years or even greater than four years
of age.
So the if you need to do a longitudinal follow-up, just remember that age
cut.
Try to follow them as long as you can.
and also we calculate the fact that is which one is for likely to develop
delayed onset hearing loss?
Is the unilateral hearing kids.
They have a relative increase risk of 4.4 fold of increased risk.
In conclusion, follow these kids as long as you can.
Because that's the only way when you actually notice hearing has changed
and provide timely and appropriate intervention.
So think I'm opening for question.
Opening up for questions. No questions?
Hick mic
>> I think the greatest impact is the fact that you have to follow these
kids for a long time, as you see, a lot of these kids are develop severe
to profound hearing loss and they are technically cochlear implant
candidates.
So hearing aid may not be the end all and be all for this kid, if they
begin hair road in the EHDI process as more audio-visual oriented,
speaking and things like that.
So in order for them to still succeed academically you really need to
follow them closely and when the hearing bottoms out to severe to
profound, the audiologist or physician needs to basically have a candid
talk that maybe it's time to consider cochlear implant.
So as long as these kids are followed closely and people are doing
something about it, I don't think that they will have delay but that's
contingent upon everybody supporting them.
Yes.
>> What do you -- whoa, sorry.
What do you recommend is a follow-up schedule to ensure that your
measuring their hearing at a timely manner?
Do you have -- have you found any research on when you should be bringing
them back like annually, every six months, sooner?
>> We don't calculate the schedule but I can tell you this, for all those
kids that tested positive with CMV and have unilateral hearing loss,
really follow them very, very closely as you see, their relative risk of
developing delayed onset hearing loss is 4.4 fold.
And maybe in the beginning you don't need to follow them as closely
because lots of our cohort, 70% delayed onset hearing loss happens after
age 4.
So perhaps take this -- these numbers and draw up some kind of -- but in
our cohort, this is a research study, we followed them annually.
That's just because we need the data.
But obviously some of these parents might balk at coming back every year
but push for an annual hearing test if he can.
Really push for them.
>> Hi.
In the older children who developed hearing loss were -- did any have
genetic testing to rule out another potential cause for the hearing loss?
>> Actually I have to say no they did not.
They didn't, because at ta time Houston didn't have a good genetic
program and the study started in 1982.
And at that time I don't think that headache test for a lot of gene based
hearing tests.
I mean this is 1982.
What is a genetic algorithm around that time?
It's feasible to do genetic testing -- probably not feasible they did
genetic testing at that time unfortunately.
>> Thank you very much.
This is really important information and really important for us to
realize that the rate of progression and latest age of onset is probably
a lot older than we thought.
What I'm curious is were any of these children at think point treated
with antivirals?
And whether this -- these data are influencing any practice changes at
this time in terms of considering antiviral treatment for these kids when
hay she signs of hearing loss or progression.
>> Unfortunately this group of kids, none of of them actually received
antiviral treatment.
Because the current guidelines, the antiviral treatment is only for
symptomatic kids.
So hundred of these asymptomatic kids get antiviral treatment at all.
And I think it's the current guidance that antiviral is only given to
symptomatic kids.
>> You mentioned -- and there is a urine test (inaudible) in the child in
order to confirm the diagnosis.
In this time of of your study, from the medical point of view, there was
some sort of progress meaning sort of provide for the mother that can be
leading to the situation and to the confirmation of diagnosis or we
continue to been congenital?
So after birth, in other words.
>> I don't -- I don't know if if I am interpreting your question, so you
correct me if I'm interpreting your question incorrectly.
So you are asking these are congenitally positive CMV kids.
And I don't think I can actually rephrase your question.
Can you repeat it please repeat it.
>> More prevention.
We know that birth we have that urine test that is confirming diagnosis
for CMV.
>> Yes.
>> Okay.
I don't know if amniocentesis or whatever test can we do before birth,
because their symptoms hydroreceively, microcephaly, there -- is
something in the medical field that is helping you your study through all
these years to be easier to identify those children?
>> Actually if someone said that CMV always will throw you a curve ball,
I will try to explain to you and I might be getting into something I
maybe way out of my over my head but I will try.
CMV is a disease that live in your system.
You can never get rid of them.
And even if you're not -- you don't have symptoms, the virus can go
dormant and it can actually activate.
And also depending on when the -- and it's a concept called viral load so
they actually take a sample of and actually test the total viral count
and depending on the viral count that you have during pregnancy and there
are actually couple of studies, study that, if the viral count is
extremely high during second trimester your chances of actually that baby
having positive show up positive for CMV is higher than someone having a
high viral load during the third trimester.
Now, this information is very hard to convey to most pregnant women
because this disease is by and large, doesn't have much symptoms that can
go by.
And also it is not practical to actually test every woman because the
fact there is that -- even if they have that virus in their body, it can
go dormant.
So it doesn't matter -- at that point in time when you test it, oh, yeah,
low viral counts don't need to worry about it.
No.
Because it can get reactivated.
So ->> Thank you so much, Dr. Chung. We can go on and on and we can't.
You can answer any questions outside on the patio, anyone who has
questions.
Also please leave your evaluation forms unless you're staying for the
second presentation that begins now.
Please leave -- begins now.
please leave them on the chair nearest where you exit.
Thank you.
>> The next session is about to begin.
>> I'm Lynn Gold, I'm moderating this -- gold, I'm moderating the
session.
To let you know we'll begin very soon.
Please, if you need a evaluation form and there is not one on the chair
next to you or your own chair, please raise your hand and I will deliver
you one.
thank you. you're not ready.
If you're here for universal or screening for Congenital Cytomegalo virus
CMV from the Utah trenches.
They're still in the trenches right now.
Thank you.
>> WInnie, can we ask a few more questions since you're here?
We're having some technical difficulties right now.
>> Everything was working many the speaker radio room.
>> Obviously we other a world of technology, we can't live without it.
Winnie.
Dr. Chung, would you hike to answer a few more questions?
If you have a question raise your hand.
>> I'll call the AV people.
>> The man that was here ->> Kid you get the non-symptomatic babies in your study, was the
question.
>> In the research community the definition -- research community the
definition is, hearing loss is not used to count as asymptomatic, it's
all the other symptoms so even if kids at birth shows hearing loss, by
and large if they don't have any other petechiae, thrombo cytopenia, it
counts as asymptomatic.
(off mic)
>> urine culture and PCR response.
The PCR polymerase replication of the virus.
That's how actually -- literally is a very confirmative that this kid has
CMV, it's a urine culture PCR analyzing the replicated virus.
And when the virus is amplified, and it's there, well, this passes -there's no way around whether they are asymptomatic or no symptoms or
have hearing loss, any in your blood, they have that virus. That's how
we know for sure.
(overlapping speakers)
>> For some reason it isn't showing up here.
I'm sorry.
I don't know what to do here.
>> We just enrolled and enrolled and enrolled.
In 1982.
Test every single kid that comes through Houston and they consent to the
study, then in three days within three days we get a urine culture to
test for CMV.
So as close as possible to universal in one single hospital.
As universal as we can get.
>> Does inclusion of children with slight hearing loss have an impact?
>> The cut off 25 DB is unique, lots of the current CMV research as I
have said is by epidemiologist, they don't use ASHA category.
So consequently the mild hearing loss actually includes those that are
border line, a lot of them don't count them as even hearing loss.
They count them as somewhere from 35 and sometimes 40 DB as beginning,
that's where the hearing loss is.
But we use ASHA criteria, we start at 25.
So as a result, I'm -- we can pick up mild hearing loss even when they
were few days old.
That's the big difference.
Unfortunately majority of these are CMV study, done by epidemiologists
and they have a different way of of looking audio logical data.
Question.
No more questions?
>> What makeup of diagnosis audio logical diagnosis do you use because in
a baby you cannot use -- SABR or something ->> All of them.
ABR.
Start every single one start with ABR and they are very tonal specific
arcBR, not just click.
It's tone specific, it is very specific.
>> And obviously hen they get older you won't do AVR on them, you'll do
the regular hearing test.
>> Thank you.
>> What frequencies are you testing 5124 and 8 by any chance ABR?
>> 8.
>> Routinely?
>> Early on the protocol when I look ate, it's ma -- at it, it's massive
trying to add code to the arcBR and result tone by tone.
500 per thousand and 8,000 and later on the protocol switched a little
bit differently, they no longer do a 8,000.
They switch, Houston used a protocol switch but 5, 1, 2 and 4.
Obviously sometimes they don't get one or two, but usually -- you know
audiologists typically do five, 4 then try to fill in the gaps.
>> What is your average degree of hearing loss these children are
showing?
As or the change?
>> All different kinds.
All different kinds, as I say, even up to adolescence, some of them, just
beginning to have hearing loss.
Some of them by the time they reach adolescence they're almost -(inaudible) literally the virus (inaudible).
So all different kinds.
So is don't assume that CMV is going to only severe to profound hearing
loss, all different kinds.
>> Thank you, Winnie.
Talk about apropos name, after that little technical difficulty, wait, I
forgot ->> All right.
I'm ready now.
>> This is just my daily life.
At the department of health doing CMV.
Right here.
Case and point.
And these are actually little cytomegalo viruses.
I have like -- the best newest Techno savvy, can you make me these little
-- the little CMV balls with eyes.
Anyways, I oversee the audiology mandates in Utah so we have the early
hearing detection intervention Congenital Cytomegalo virus and children's
hearing aid program but I will be alluding to our first two mostly CMV.
So I apologize for the clip art my graphic.
Now I know why they put it on there for Hahn a malls like me who try to
sneak into their presentation without copyright so this is what we have
heard over the past two and a half years.
So we're in there's an assumption if you have another condition you also
have Congenital Cytomegalo virus.
We still here -- CMV is rare.
So why are you going to check for it?
It is relatively rare, but it's out there and it can be devastating.
We have had unfortunately infants that have undergone spinal taps for the
testing.
This was one that we almost fell off our chairs, a punch to get a urine
sample, it literally is -- luckily there was only one of those but the
fact that the physician ordered it that way made us feel awful.
So to give a background some of you may know this, some don't.
We have a mandate that started July of 2013 and it was two parts, there
was a public education piece to increase awareness, to let women who are
pregnant or planning to be pregnant know about the risk of CMV during
pregnancy.
Then there were certain groups delineated in the law itself who we had a
make sure knowledge was imparted to.
So that's the public education piece.
This is the testing piece.
It's related to the failure of newborn hearing screening, it says if a
new morn infant -- newborn infant -- okay.
Thank you.
So if an infant failed a newborn hearing screen test the medical
practitioner has to test the newborn before they're 21 days of age for
Congenital Cytomegalo virus.
There's an out unless the parent objects and the provider has to talk -have a conversation with the families when they order this test and talk
about defect and problems that can come from CMV and available methods of
treatment so just keep this in mind this was written into the law.
Now, anyone involved in state government knows that there are rules that
are written to accompany a law to further explain it.
So we had to clarify what does that mean to family newborn hearing
screening, is it one that happens when they're 12 hours old or 24 hours
or just exactly what is it.
So they have to fail two hearing screens.
So the initial hearing screen scene in the hospital and then the rescreen
that occurs as an outpatient.
Or if the first time they have a newborn hearing screening if they're
over 14 days of age and they fail or refer, then they knead to have their
test, so in that case they only have to have the one.
And like a lot of other states we have two screening stages so the babies
get screened, fairly early in the hospital h, ten to 12 hours so they
have enough time to rescreen before discharge.
A lot of the babies are discharged about 24 hours and they will test
them.
At that point they're to come back, before 14 days of age to have
outpatients screened.
So 10 to 14 days we aim for, 14 days at the max.
Then Utah they have a sense of the numbers, by cooing it this way, about
90% of the kids who go on to fail at the inpatient or hospital stage will
pass the outpatient rescreen.
And we're one of those states too where a lot of the population lives in
one area and Salt Lake City, so very difficult in Oregon areas of the
state to get a diagnostic evaluation.
So this helps us a great deal with our process in terms of children who
need these evaluations.
So everyone knows about EHDI 136.
So when NCI Utah because of our CMV testing we're a half 36 because we
don't have 30 days to meet the milestone.
That's not -- 30 days isn't the goal.
We want to do it as soon as possible but we have got to get both our
screening stages done before they're 14 days of age so we can notify the
physician and get the child tested before they're 21 days of age.
Another part of the rule is special populations of newborns, so anyone ta
works with the NICU know that a lot of times they of ear not going to
have one newborn hearing screen much less two if they're very sick,
before they're 21 day of age so the neonatologist when this was passed,
and I met with them, they were saying, that's silly, we're not going to
do that.
So we said you're the care provider and you decide what you're going to
do with this that.
So when we look at our data, we have to parse out okay did this child fit
into a special population?
So there's a lot of kids that have different NICU levels.
Right?
So what we have done is stick to the letter of the rule and if the child
could not have their first screen by 21 days, then we excluded them from
counting them being CMV eligible.
something we had to figure out U. and the last part is reporting so the
doctors that order the CMV test are supposed to send to us within ten
days.
I forget my dot.
So what is our system?
We have a CMV we call it our CMV fact form, this first part here, is
there a pointer as much this first part all of the hospitals when the
child fails as inpatient stage they fax this over to the primary care
provider to say hey they failed their first screening, just to let you
know.
where they come back for their second heal stick, when they're about 5 to
7 days of age typically, we want you o the say hey, we know you failed
your hearing screening and have the conversation right then.
I want to know when you go back for your second screen, I want to know
the results because if you fail, this is what's going to happen.
We're going to do h this test for cytomegalo virus, this is why.
At the time of outpatient screening, if they fail that, they get another
fax that says hey guess what they failed again, they need their CMV
testing.
And we have feedback from physicians ha said hey I want to know what
happened if they did pass.
So early on after our mandate we sent a thing saying hey, they passed.
They're good.
You don't have to worry about it and the third part is for the physician
when they get the lab result, send it back to us.
So looks like a pretty in our minds, that's going to be perfect.
We got it all figured out.
Everyone is going to follow everything.
Which like my Powerpoint that wasn't loaded, kind of the same thing can
happen.
That's okay.
Because then you just get better as you learn, as you go.
So we thought from some of the analysis that we did contacting physicians
like in the first year we called and said you had a child that met the
mandate, how come it wasn't done?
We collected data to figure out what were we missing.
A lot of them said yeah I got a fax from them, I didn't know what to do.
Again, we thought we were being so clear, so we put this fact information
sheet that said remember this is the law, this is why you're getting
this, this is why you need to order it.
What the reporting requirements are.
And then we listed out the labs this in Utah, where they can have the
testing done, what are the CPT codes they can order.
IPD 9 and ICK 10 appropriate neonatal hearing loss code.
And we thought okay now we have really got it.
They're going to bite, all that.
And I got to say, as time goes on, it's really gotten a lot better.
But I tell you all this along the way so those of you who are going to be
CMV screening hopefully can learn from some of the things we learned from
when we were down in the trenches.
What we found with the reporting is we thought it's mandated.
We're just going to be no problem.
We're going to get everything.
We didn't.
And we found we were only getting 50% of the results.
Now, I'm going to present some data later on and just let you know, I'm
reporting a data that we can find or that was reported to us.
So there could be more kids or tests done that we still don't know about
it.
But we spend a lot of time trying to figure out if this child, what
happened with this child.
So some tips are over time we have been able to get access the to the
different electronic medical records and different hospital systems and
in Utah we have a system all called inner mountain healthcare, it
services a bunch of children in the state, probably a good half if not
more.
We were able to get direct access in our office to look for lab results
on these kids. It was time consuming but at least we had a place that we
can go.
We also over the clears, the labs, we'd call them and say this would send
them the law and we were supposed to get it and depending on the person
that you got, we might be able to get results sent to us.
Now we really have got Mary, in Utah and you want to speak with someone,
Mary is one to go to because now she sends this list but it took a while
to get there.
So -- if you're going to have legislation try to make direct lab
reporting have the labs report directly to you, don't put another burden
on the physician.
And we just started a new rule, communicable disease folks at the
department of health I have been talking with hem and they say we're
going to be amending our rule.
I said really?
I'm like I wonder can you make congenital CMV testing a part of your
rule, you're already amending it, it passed, it just took effect.
So now labs throw an electronic system, it leaves to the communicable
disease folks they're going get the results.
We're in the beginning we're going to get anytime a spreadsheet and have
to enter it but with we're still going to get it.
And eventually I want to apply for a grant or something like that with
where we can build an electronic data dump where we can get it directly.
But it's definitely a step in the right direction.
So I want to tell you in the first two years, so July 1st to June 30th,
13 to 15, this is what we had.
So just in case you don't know, what we do in Utah, we do PCR testing, on
saliva or urine which is sensitive to the presence of Congenital
Cytomegalo virus as long as done in the first 21 days of life.
Blood in the first with share years, 6% had been done on blood.
Now, blood is different testing in adults, having a CMV infection trying
to detect congenital in infant.
So in an infant, blood is not very sensitive.
I mean, 30 to 40% depending on different studies that you look at.
So if a child has CMV, it's 30 to 40% likely to be detected through blood
sample, so people say why not just test the blood spot?
We got that from physicians in the being, it's already being drawn and
we're trying to tell them studies show right now we don't have a good
enough test for that.
Maybe that's going to change.
But if blood is drawn and it's positive, then we can at least still say
because it's sensitive, it's positive, specificity isn't very good but we
can say it was congenital but if it's negative then we're not 'ally sure,
and we may have missed the 21 day window.
And for urine and saliva, we're about 50/50.
So the cost is pretty similar for the labs.
And it's not paid for by the State.
So it's through insurances or medicaid.
It would be nice to do it in our state lab.
Like we do for blood spot but we don't have that technology yet, they're
working on vat dating an assay, it would be easier and have more control
on it but we don't have it yet.
So for those looking at doing widespread CMV testing I recommend trying
to get a centralized testing place and centralized data reporting
mechanism.
I think you will be doing well if you do that.
So does anyone know what can come up with a little infant -- remember by
the time we test these babies they're between 14 and 20 days of age.
With a saliva test.
If the mom has CMV it could be present in her breast milk.
So in the first two years we did have seven false positive where is they
were tested with -- and it was like five and then two in the beginning of
the second year.
There was a study that we had found that said it's present in breast milk
for at least half an hour.
So we went let's make it a double.
So we recommended don't test, swab the baby until an hour after nursing.
Well we had gotten some false positives where they tested positive on
saliva and confirmatory urine was done and it was negative.
So then we got worried and changed and said let's go two hours.
And since we made the two hour change we haven't had any false positive.
Take it for what it is.
It's our experience, there's not a lot of data on that, some get a little
nervous about doing this lab testing anyone around parents in here know
newborns are hungry and it can be hard to make them wait two hours
between feedings.
Something else that we developed along the way is we wanted to make it a
little bit easier to know urine good, saliva good, blood bad.
So we -- and we put in here about waiting on the feeding and we had -- we
put this together for providers, this is what you're going to get, this
is what it's going to look like, this is what you do.
YADA.
Then we also did for the lab, so we went around to the labs to have a
little poster hung up, same thing.
Because what they were finding is the lab technicians were thinking they
were trying for -- treating them like adult, not really emphasizing the
difference or even stocking the swabs or knowing how to do the swab.
Then parents are very, very active so we did it for them too.
So we instructed the hospitals when they fail their outpatient screen,
give it to the parents, moms, are like okay, this is what I have, and
they're a great advocate and say wait main, this is blood, bad.
Let's not do that.
So that's been very helpful and I think that had a difference in the
reduction of the blood testing.
So does anyone know why -- you can't answer, Winnie.
Why -- what's magical about 21 days?
Yes.
(off mic)
>> Versus acquired.
Exactly.
So if the baby acquires it going through birth canal or breast milk, it
takes 21 day it is show up in the baby's system, if they're positive
before 21 days we can say that it's congenital.
Exactly.
So when this came we said okay people aren't used to this shortened time
line, so there she is.
My wonderful colleague back there, we did our prenatal brochure and made
some changes to it.
On there we said before you leave the hospital be sure to know the
results of your baby's screening because if they didn't pass they need to
come back before 14 days of age, we started planning this feed about CMV
so this is all the offices OBGYN, family practice offices so women are
thinking about it, they know what to extent.
We also put in here if your baby doesn't pass a screen we need to notify
your pediatrician so if at all possible choose before you have your baby
because our hospital said a lot of these families don't have a
pediatrician chosen yet.
What am I going to do.
We made the recommendation get the baby done in patient outpatient before
14 days, we just did a data study that looked at the first two and a
half, two years we found babies that didn't do it within 14 days, were
88% less likely to have testing done.
So we are sticking with that guideline but we're using this in all of our
education efforts so it made a difference if their goal instead of 20
days to get it in under the Nick of time to keep with 14 days.
So what happens with over 21 days?
It's close but no cigar.
When it first came out it looks like an olive with apemen toe and I'm
like that's not going to work.
People who call and say, oh, I got the fax form, I didn't pay attention
to it, the baby is 23 days old.
The baby is 28 days what do I do.
And we tell them go ahead and do it.
Because when a baby has congenital CMV they're shedding for a while, so
try it and if negative that is worth doing.
If positive then we got to figure stuff out and look at other symptomsk
imaging and see if there's abnormalities and things like that.
I got the warning to help with having to satisfy this, providing parents
information we had a brochure that we made up in Spanish and English.
All our stuff is in Spanish and English on congenital CMV hearing loss we
wanted the screening program to have something to give to the parents
that they can read about and it helped to explain the process and what
was going to happen about the cheek swab or urine sample, to give them
the tools that they need.
This past year if anyone went to our earlier session today we have done a
lot of quality assurance for this year and we looked at performance on
CMV testing the number of children eligible versus number tested.
This is a sample of birth hospitals with annual births per year.
As you can see, some are better than others.
This hospital right here, the managing audiologist happens to be in the
room and she's our super star.
Where did she go?
There she is.
That's her hospital.
So she is a superstar.
But there's other people that need more work.
So we said what makes a difference with these hospitals?
Why are some doing so well and some not so well?
Some of the hospitals in the beginning were proactive and they created a
laboratory order to have for any of their kids, their medical corrector
of the hospital helped create it and they were doing really well.
Some people like our superstar didn't just send a fact form to notify the
physician, she also calls and the second best performing hospital doesn't
do the fax form because they say it's against ticker rules with their
hospital and they just call.
So right now we're looking at having that actual telephone call seems to
really make a difference.
It takes extra work but she finds she's got her system and they know her
when they call and she's very proactive to be sure get it done.
>> We appreciate you, Laura.
>> It spreads, right?
>> Absolutely.
And there's Laura.
Without her hair.
Laura without her hair.
Sorry.
Okay.
Now what about this hospital, what was going on with this hospital?
39% of their kids got it.
This was a big hospital, we had 1500 birth Ms. This hospital per year, if
it's California or Texas that doesn't seem like a lot but Utah that's
pretty much.
What we have found is the hospital was doing inpatient outpatient and
then outpatient screen again so what was happening, they weren't making
the referral for CMV testing at the time of the failed outpatient.
They weren't following the guideline.
So they were waiting, thinking, if they come back again, and they pass
then we're good.
But the thing is no, the letter of the law is you still need to do it at
that time.
And not surprisingly, this hospital has more difficulty getting infants
in for their diagnostic before three months because there's been some
records we found liable why are they coming -- we found like why are they
coming back more than once for outpatient?
We discovered with data analysis the fist two years, the babies that did
this were 55 to 60% less likely to get their CMV testing done, the clock
is ticking, I know it's ticking on me too.
>> Excuse me.
This is fascinating but there's 10 to 15 minutes break now.
Leave your assessments on a chair near the door.
But if you would like to continue for another five minutes.
>> I'll continue but don't feel pressure to stay.
>> Thank you.
So anyway, this hospital we're doing a pilot on quality improvement with
them, and the coordinator came up with a form, a pre-written order form.
And so it's hard to see but it says your baby did not pass the hearing
screen in the hospital, follow up hearing screening is needed.
Please bring the form the follow-up screen so when the family goes for
their check up with their physician, they already have the order signed
saying if you fail, the second one, I'm going to give permission and
order that testing and check what they want and they're also going to
odder tear diagnostic.
So they're just starting this pilot phase but we're really excited to see
if this is going to help the situation. Another thing that we're doing
is report cards.
And hopefully they're going o the look more like this.
But we're giving them data to say this is how you're doing, this is what
you're doing well, this is what you're doing not so well.
But we're actually letting them know we give them a break down how many
kids are positive or negative or the they had a false positive.
If they were documenting in high track system when they made the
referrals because the if it's not in there we say you don't know they
made the referral.
If it doesn't get done they can at least have evidence saying I contact
the physician, I made the referral.
So tips.
Peer pressure at our annual state conference, I put hospital A B C D
whatever, we actually had the hospital names for all the performers on
there so they can see how they were doing with their peers.
That was really telling.
When you look at the a the that graph and you're like wow this is good.
And like gosh, that's mine.
And it's not so good.
We also have -- try to provide venues forker then to share success
strategy -- for them to share success strategy.
So if that pilot is successful we'll ask if we can have permission to
share with other hospitals.
And this is huge.
I now have a CMV data coordinator.
She started in July.
So two years after we did it we have someone who is just focused, 32
hours a week on data.
Data analysis and contacting physicians, soon as we know there's a byebye that's eligible, -- baby eligible she calls the physician and finds
out do you know what you need to do, so our numbers I think are going to
get a lot better.
So get as many people written into your mandate as possible.
The out of hospital births real quickly.
This is in there because we always chuckle when we get a vital record
report and it has a place of birth and says interstate 15-mile marker 3
or whatever.
Actually says that on the vital record report.
As we all know in the EHDI world it's sometimes hard to get the out of
hospital birth babies to follow-up with EHDI.
Same with CMV we only had 6% out of hospital births in the first 24
months that followed upful it's now better.
It's about 14% which is still not awesome, for sure with we're definitely
work on it but we know that's another group we need to focus on.
We had a focus group with midwives to find out what the deal was and they
said parents didn't have medical insurance, a lot come to midwives
because they don't have insurance and mid wives are cheaper.
The cost.
that just in general their clientele can be more likely resistant to the
medical community and follow-up and some of them like to be off radar.
So having the state telling them they need this testing and they say huhuh.
And then this was really key.
Our midwives told us we're the only ones that see the baby for the first
six weeks.
They don't see a pediatrician or get one if they're going to have a
pediatrician until they're like two months old.
We have a lot of lay midwives, they can write order though we tell them
they say we refer them to whatever but we think that h is a big problem.
And that's causing the poor numbers.
We also made sheets for them a as well.
I just want to give you some -- I find interesting information.
In the first two years we had 840 eligible babies we took out our special
Potts, 136 we had about 704, or 7 per thousand births met the criteria.
And these were numbers.
So you are much more likely to have your CMV testing done if you failed - you followed to first fail the second.
These over 14 day ones a lot were home births and they had a lower
percentage.
And then these were those triple screeners so they western getting
referred on the first outpatient.
That was a huge number.
So if we took out those babies out of hospitals and the extra screeners,
our CMV testing compliance for the first two years was 74% to almost
three quarters.
So really know what we really need to concentrate on.
Anyone interested many the results in our data, we had an incident of the
kids that were tested of about six per hundred.
These were detected by the mandate, these were kids detect bud they were
considered to be symptomatic in the NICU and we did have five
undetermined so those were the ones where they missed the 21 day cut off
and we couldn't say for sure.
It was congenital.
>> I'm sorry you had to be cheated out of the first section.
>> That's all right.
Thank you for your attention, anybody.
If anyone has questions you can ask.
>> Thank you, I'll collect assessment forms.
[Applause]
>> Hello, everybody.
We are having technical difficulties as far as the Powerpoint goes so
since they're getting that fixed I thought I would get started.
Are you supposed to be introducing me?
Raise your hand if you don't have any evaluation forms and I will get one
to you.
Thank you.
Is it okay if I stand here?
I want to make sure I have a good visual spot hello everybody.
There's a thing sticking out, I am afraid I'm going to trip over it,
trying to find the best place to be.
This is a clear spot for me.
I'm a roamer.
That's what I do while I present.
So I worry about possible tripping.
This screen here has legs.
And I have to remind myself do not trip on this leg.
Okay.
Yeah, the slides are here.
Thank you so much.
Thank you very much.
I'm going to move over here, since to one is clicking I have click
myself, right?
The Powerpoint?
Thank you for that.
I overcommitted myself today.
It was part of this morning's session, I was part of workshops.
I was judging track, I have to learn how to say no but I love what I do,
that's why I keep saying yes.
So yes I'll do it.
But now I'm here to talk about specifically how the media, how film, how
social media, how newspapers, magazines, blogs, blogs perceive deaf baby.
Media is powerful.
Media and reality are not always in sync, most of the time.
This discussion is keep you aware so when you see things in the media
about deaf babies or children, you have to think analytically, check in
with yourself, check with the idea what the story, and the idea behind
the story.
I was impacted heavily recently, starkY just had their what do you call
it, people are calling it inspiration important, we'll talk more about
that later but they have a strong connection with politician, strong
relationships with Hollywood, they have relationship ships with religious
organizations, those are powerful groups that can either make you wealthy
or neglected.
So those again are three different -- two -- one candidate for president,
their perception of deaf children and deaf children again focusing on the
audio logical aspect of deafness only, so keep that in mind, that
perception.
So let's watch the video.
Let me tell you what the video is supposed to be.
It's from the daily mop, it's showing presidential reactions to a Childs
that's not any sort of communication, just the actual reaction to the
sound, that's supposed to be the number one resolution. There's no
discussion about what about the child language acquisition?
Where is the child educational goals?
Where are they at in their educational goals?
What about their family unit, what about their lake and communication as
family?
There's just -- none of that, just one sound being heard by deaf child
and all the problems are solved.
That's how people view deafness and that's where they're willing to put
the money.
Some donate based on videos like this.
Does everyone know who this is?
He owns virgin airlines.
He's mega millionaire and again, this is a view of seeing -- he feels
deafness is one of the top problems in the world and if we can solve
that, then so many other problems would be solved.
That's perception of being deaf is -- deafness being a problem.
there's two different things, the media is obsessed with this deaf child
reaction to a sound.
The video that was supposed to show previously was President Bush and it
was a 12-year-old child and she's responding to the sound BA.
And then they celebrated and celebrated.
We have so much more than the sound BA.
we are so much more than one sound.
So that is why it's important the think how media is reducing us to these
units of sound.
Not able to show the video but it's the arch bishop December Monday TUTU
giving a presentation saying he was called by God, he's so thankful
children are being able to hear through assistive devices.
So I wanted to show these videos, these people in positions of power,
politician, celebrities, religious positions of power, these people are
the higher levels and this is the thought process and perception of
deafness.
How are we supposed to change that, how do we get them to see us and
babies as a whole child?
How to change that.
And I can't answer that in a half hour.
But it's something for y'all to think about.
So these examples I just gave are pathological portrayal.
Looking at the child as need to be fixed, does it matter if the child
wants to the play sports, doesn't matter if they want to read book, it's
functioning their inability to hear, if they can't hear it means they
can't function.
The one with the BA sound, the President Bush video, that -- do you think
it's going to go on to mean huge economic opportunities?
Because they have one unit of sound?
Maybe Niles on his way the earning millions of dollars but he's more than
units of sound.
He's a whole human being living a very successful life with a deaf
person.
The point is, I want the discuss how the media framed us as deaf people.
And then take hold of the deaf baby and how to expand that frame, how to
show deafness and deaf babies a as more than just units of sound and
inability to hear.
The three videos, politicianings, celebrities, religious leaders, they
all present and they speak on deafness but never is there a deaf person
at any of these events speaking on deafness at the starkY evens where are
the deaf people, the deafer narratives?
There are none, I looked through all kinds of videos, it took me several,
several chances before I was able the to find any deaf people, they're
not having impact in the media, like the hearing people are.
You can read this slide here.
Hearing narratives about deaf babies turns them into objects.
Placing deafness on display that gives comfort to people that are
hearing, it does not give us comfort.
We as deaf people are more than just mere object.
This video doesn't work either but - going a video of the deaf narrative
and how that influences -(off mic)
>> I'm relying on the younger generation, see if she can get the video to
work.
It's okay. I don't want to rub out of time.
I did -- run out of time.
I embedded the videos into the Powerpoint.
I'm worried about running out of time.
So I just you already know people like Nile, people like LIAM whether
gave the presentation keynote this morning, many are inspired by that
keynote.
That was a powerful deaf narrative.
A story told directly from a deaf person and their lived experience.
What inspired them as a deaf person, their -- as a whole human being and
hearing the experience hearing her family life her professional life, her
motivation, how she got to where she is now.
She shared her entire story, that is great example of a deaf narrative.
That's what's missing in the media.
We don't get enough of that.
Hearsay an opportunity for families who chose to use sign language for
baby and deaf people who grew up with sign language to share their story
to feel -- take pride in why they learn sign language or why hay use sign
language and sharenary narrative.
That's becoming viral.
I look ad the hash tag today I couldn't keep up with them.
Deaf people are starving for more representation, they have not seep the
narrative, not given the opportunity to share their narrative in the
media.
We're not.
The media does not recognize any deaf narrative.
They recognize situations where a child story I encourage you to look at
the hash tag why I sign and see the different stories and there's also
transcripts of the lot and capping of a lot -- captioning, so hearing
people who don't know sign can enjoy and see the narrative.
Those of you who can share your own narratives, it's a great way to
infiltrate media at large with your story.
There was a reporter whether flew in from UC Berkeley, really from
Oakland, but he reached to me asking what I thought of a specific app
called glide.
I spoke with him, I'm president of California association for the deaf so
often I'm asked what's the arcD position on this or that so I was giving
a sound byte, it's a neat app, it's friendly, it's visual, all that.
And then we had a conversation, with one thing led to another and he said
I didn't know that, I never heard that.
I didn't know that.
Then he thought why isn't there media coverage a about your life, about
your story, about your culture.
There is but there's not enough.
I'm hoping -- stand up.
He flew in because h he wanted to understand more about us and wanted to
hear our story that's one of the few positive experiences, I love he
value it is the storys from the heart of the community, we need more like
you.
I want to dissect the framing that's harmful and how it affects
perception of deafness.
What are stereo types you have seep or heard from other people about deaf
people, somebody share what they think?
>> Those who speak must have better English.
Those who sign must be so isolated.
Those who speak well can hear well.
If you don't speak you must not be intelligent. These are stereotype,
misconceptionses, myths about us as people.
And we know living our lives that it's not true.
Another example I want to point out this idea of interpreters being
heroes, you see articles about look at this beautiful amazing interpreter
helping all these poor deaf people.
That one really gets me.
As if deaf people couldn't live without hearing people.
It's one thing we recognize deaf people value interpreting facilitating
communication.
It's not something to be -- because it's often framed as interpreter
savior.
Those are really two very different perceptions.
Being the first can he have person ever to graduate from the university.
-- graduate from the university.
Deaf people have been doing things for as long oz -- since the dawn of
man kind, we had deaf people accomplishing things.
Deaf people that played foot pal, modeled, deaf people have been actors.
And the 1800s we had deaf people graduating from the Berkeley school for
the deaf and going to userC Berkeley as students.
UC Berkeley as a student.
Until one of our first alumni for California school of deaf was a student
at UC Berkeley.
A lot didn't go to Gallaudet, they went to UC Berkeley.
Why don't we get that information in the media, the media tends emphasize
look at this recent college graduate that's deaf, that's amazing, they
have been graduating from college for hundreds of years.
Let's think about that.
Praising a deaf child who is mainstream school and able o play football.
Looking at that as such inspiration, what the student has overcome and
able to accomplish.
Deaf people have always been able to play football, why are we
overcompensating for something?
Why are we celebrating this as some sort of tragedy we have overcome
instead of a regular thing that's been happening for years?
We are born deaf and we can do anything hearing people can do.
But it's often framed what we have to overcome to be successful, what we
have to overcome is people's attitudes as barriers but we don't overcome
other things.
That's all -- with we have to overcome the attitude that we can't do
things.
Ironically those barriers are created by hearing society as a whole.
So they celebrate overcoming these amazing barriers but they set up this
idea of a dog and pony show for us and I want to be clear, I'm not trying
to be negative, I want to be authentic and look how the media frames
usful we have a responsibility to try and repair that.
I want to discuss more how to do that.
I have to insert beautiful pictures of deaf kids in between my slides.
So I hope if I keep showing you these beautiful kids, deaf kids just
being, just know -- I love that word, we're in the overcoming, we're
being.
Just deaf children being.
So now the other way that media frames us that is harmful is inspiration
important.
Inspiration PORN.
This is terminology by the disabled community, the idea if if you can
take a step out wheelchair if you're able to graduate from college or if
you're able to look a certain way or look you're able to function as a
regular person, look what you@your drive, so amazing, I have been told so
many times I'm amazing I and I can't figure out what I am doing, I'm a
regular person, I get up in the morning I have a cup of coffee, I watch
HULU, I talk to friends, I do like to read.
But I'm like any other hearing woman but because I do regular every day
things, I get labeled amazing.
So think about that.
Think how that frames us.
That is where that idea inoperation PORN comes up.
We do not find this inspiring.
there's nothing inspiring about me driving, nothing inspiring about me
dancing.
I'm just like any other hearing person.
So unpacking how this inspiration POR can be harmful, it elicits
unhealthy responses from the viewer so you see these comments from people
watching videos saying I feel so inspired or I wish my baby was like you.
Not necessarily a bad thing, it's weird, I mean, it feels weird to get
comments like that, I'm going to be honest.
Hopefully you really want your baby to be like me, you don't know me, it
tell me as a whole human get to know me before you want you baby, and
overcompliment.
I get that a lot.
How many have experienced that as deaf individuals, overcomplimenting?
So that's the danger behind inspiration PORN it hides real issues. So
for example, what with the videos of the cochlear implant activation and
how amazing when they hear sounds but the real issues mind that is, is
the baby acquiring language, is the child acquiring language?
Is there a language delay, is there language deprivation?
There's no discussions about that in this amazing video.
If you can find me one mainstream media where whether it be reporter or
television news, blog, talking about language deprivation, let me know.
Because I can find millions of cochlear implant activation videos that
are considered inspiring and amazing but none which have any comment
about actual issues.
So the harmfulness of inspiration porn is it masks the issues.
Here is my inspiring picture.
So like we just discussed, the cochlear implant activation video, it's a
clip of the cochlear implant -- I got to be honest, I'm sick of them,
people keep forwarding them, these are well intentioned friends hearing
family members, sending them to me saying look at this amazing clip,
isn't that great?
I think not again.
I want to show you something amazing so I send them video of NILES
modeling because I say that's something to look at.
I think we just have different concepts of amazing than mainstream people
do, I guess.
The difference between inspiration porn and what inspires us is that the
hearing narrative versus the deaf narrative.
And those are two very different perceptions.
I just actually last week saw another CI activation article so I put this
clip up there.
I didn't want to burden with enough of toes activation videos but I just
thought I would put a quote I saw last week, the child was 18 -- well, I
can't remember if 18 months but maybe more like a toddler having their
cochlear implant activated, - the quote from we're just thrilled he hears
us that he's happy hearing us, bun day, not yet he's going to say mama.
That's the quote from the mother.
One day.
Why are we waiting for this child to acquire language why hope one day
this child might say mama?
Why not now?
The media is not covering ha.
And that's where my concerns come in.
Again, I mentioned the idea that turns the chide into an object so
objectifycation of deaf people. So something to be -- something cool to
watch but not looking at it as a whole human being.
Just the idea that you're fixed and becoming more like the hearing
mainstream world instead of thinking we are human, we're both human,
they're a human connection, a whole human being.
Many of you said the same thing, deaf people, this idea deaf people can't
be successful unless they hear and speak like I do, that perception.
Any time you see an article where you have no comments from a deaf
individual themselves or any member of the deaf community, that's a red
flag.
That's a tip to keep in mind.
So sometimes there's an article or action you see that's not inspiration
porn, it's well meaning but it misses the mark.
I don't blame people -- I might reach out to the reporter and say you
know, that framing is problematic, it's not exactly positive.
They are often unaware, people don't know what they don't know so it's an
opportunity to educate.
The savior's complex, a lot of the framing and perception of the media
come from that.
Like starkY, that company saves deaf pay byes.
It can be any sort of device or technology, but this idea these things
saviors the media is showing them these things are saving deaf children
and these are hearing people's narratives.
Where are the narratives from the deaf community?
Any time you see anything in the media you have to ask yourself where is
the dictionary in that?
In the back can you read this quote?
I want to make sure.
Deaf people are a variety of the human race.
The media is not recognizing that.
So we have the opportunity to push, to get respect we need from the
media.
This perception has been going on since before Alexander Graham bell
wrote his book.
His goal in writing was to try to stop deaf people from intermarrying.
The perception is they were long before he wrote the book.
So now we have the opportunity.
We have social media, we have the opportunity to share narratives, our
experience.
It should come from us as deaf people in the deaf community.
We need to make the hearing people listen to us.
Of course will will be some deaf people who say I don't agree with what's
being said.
There are deaf people who disagree with that, they follow what the
doctors want, what the audiologist wants.
I have -- I'm here to let you know we as deaf people have to do our own
unpacking within our own -- that's where you see here this conscious
audism it's important to do our own work.
We were born into the a world of hearing expectation and that's part of
us so we have to unpack that.
As members of the deaf community we're here to the say we do not accept
inspiration porn.
That we instead need positive messages about us as a whole.
We are human beings and we need our narrative to be shared.
I knew I was going to trip.
I told you ahead of time.
So we need to be worried about the accurate information.
How can the mainstream media get accurate information about the deaf
community?
We have to tell our own narratives.
No one outside of our deaf lives can do that for us.
What is responsible media.
Here's examples.
I really wanted to emphasize -- my time is up, I want to draw your
attention to recognizing and valuing the narratives of deaf people.
Working with deaf people.
If you want to create media, don't do it without deaf community.
He's been working with me since October.
I told him you cannot learn about deaf people in one interview.
This is an ongoing process, you have to see yourself, you have o work
with us, curious how the article will turn out.
Looking forward to it.
We need to ensure that as hearing allies and authors of this media, it
has to -- you have to make sure the media inspires deaf people, if it
doesn't inspire deaf people, something is wrong.
If you make deaf people angry listen.
There's accountability for the portrayal of the deaf community.
How you can create responsible media.
Learn about the framing.
And the people in the deaf community, you're responsible for the
marketing, the agents of your story.
Then hearing people know the deaf community and also know the attitude
barriers.
Work from within.
Especially when working with children.
Hearing reporters, be inspired when we do something amazing, not because
we did something ordinary.
So it's important to examine your own biases.
So when you're thinking I want to ask this deaf person why don't they
have a cochlear implant, I challenge you to ask yourself, why do you want
to ask that question?
We as deaf people of course yes we need to be inspired.
We don't like the inspiration porn, that doesn't mean we don't want to be
inspired at all.
We want to be inspired.
We want to be accepted.
Of courts we do.
We want society to view us as who we were born to be.
P if p you can't see me as a deaf person that means you're not seeing me.
Being deaf is part of who I am.
That is so good.
Disney commercial, the marketing video with two girls -- you have to find
this, it's an amazing video, it's a healthy whole child approach to
marketing, shows them as happy whole individuals, this is what deaf and
hearing children should be portrayed like.
As I mentioned earlier, deaf children don't need to overcome.
You have to accept that deaf children are being.
They have regular childhoods.
ASL is not a tool, ASL is a language.
Whenever I see the phrase or the comment ASL is a great tool, it is not a
tool, it is a language.
With arcSL or English, it's never or, it's always arcSL and English -ASL and English.
Thinking about universal design, accessibility for all.
This is a quote from Dr. Laura Ann PETO.
The human brain does not discriminate between the hands and tongue.
People discriminate but not the human brain.
That's what we need, we need to change that perception.
These are the people who inspire us.
That's a deaf senator in Spain here on lower left.
My mother is from Spain so she is a great hero of mine.
I wish we could have deaf center here.
Can't wait for ta.
Do you know who this is on the top?
Leah, our keynote speaker from this horning.
Who is on the right?
NILE.
he's doing great things.
These are newsworthy people.
Right?
Try to do that as quickly as I could.
With we have a comment over here?
>> We work together in California.
It is interesting because I have helped to lobby all of our senators over
the last many years and -- I'm sorry, the assembly men, the members.
So we lobbied for the bill 272 and we were telling the assembly men we
were fighting for the children on educated in sign range.
They said wait, you're not educating them in sign language?
They were not even aware.
So that's an example of how these people politicians thought they're
being taken care of, everything is fine.
So we as a deaf community has to educate them.
We had to insert ourselves into the system to say we did a lot of -- we
got to fix media, we have -- but that really impacted when I realized
that wow, that's an important part of being deaf.
That's a part of the deaf narrative, inserting themselves in that
position.
Exactly.
Legislative work, lobbying, it's about reframing.
Marketing it.
Owning it as a deaf community.
We all have that responsibility and advantage of social modeia.
No gatekeepers for social media. We have access to it.
But we need to be organized.
Right now we're all over the place.
It's very organic but if we can organize the powerful message ta we can
have with our shared narrative.
Can you imagine how loud that would be?
The sea change that would bring?
How society would view us?
Thank you.
My time is up.
[Applause]
(off mic)