this story is about my introduction to
narcan which is a drug that kind of
brings people back from the dead it
brought my sister back that’s Jenny
narcan’s used when someone overdoses on
an opioid these are drugs like heroin or
prescription pain meds like morphine
vicodin or some you probably haven’t
heard of like dilaudid
when a person overdoses their heart
slows down and their breathing slows
down and it becomes really hard to wake
them up from this state
so what narcan does is it blocks the
opioid and it reverses the overdose and
I didn’t know any of this six months ago
I’m not someone who struggled with
addiction I’m not a doctor I’m not a
social worker
I’m just someone’s sister who was
drafted into the frontlines of the
opioid epidemic earlier this year when I
got a call at work telling me to come
home that my sister Jenny was in the
hospital and had just been revived with
narcan I fly home that day and within an
hour of landing at the airport I’m
helping my sister shuffled to the
bathroom at the hospital because she can
barely walk I don’t know it yet but
Jenny will die in just six days from
cirrhosis of the liver from alcoholism
and opioid addiction she’s just turned
44 years old she’s never done any rehab
no interventions and my family has not
had a single conversation about
addiction I am completely blindsided
everyone in this room knows someone who
has died or struggling from addiction
more than hats at 175 American’s die
every day from overdose more than half
of those are from opioids I share my
story with you today so you’re not
blindsided like I was and you don’t make
the same mistakes that I did because
these are mistakes that I’ll regret the
rest of my life so here’s my story I’m a
very good problem solver I work at the
u.s. digital service which is a
technical startup in the White House we
were started by President Obama in 2014
and we’re going strong in the Trump
Whitehouse we’re about 200 engineers and
designers from companies like Google
Apple Amazon and Code for America we
sign up for two-year tours with
government to work on complex problems
that’s me in the middle and I joined the
digital service because I wanted to help
veterans mainly because my dad is a
Vietnam combat veteran and a Bronze Star
recipient although he’d never tell you
that here’s my family we grew up in
Buffalo New York I’m the oldest of three
sisters we all went to college my sister
Colleen is a nurse and lives here in
Saratoga with her family with her
husband and three kids and my sister
Jenny is sitting in front and she stayed
in Buffalo and she was a stay-at-home
mom she lived a middle-class suburban
life with her husband of more than 15
years and their two kids my parents will
celebrate their 50th wedding anniversary
next year they are hard-working
humble and very private people we go on
sister vacations our last one was Key
West and Colleen likes to sleep in so
Jenny stuck being my workout partner and
you can see neither of us has any idea
how to do yoga and we see each other
regularly I would describe Jenny as
smart athletic funny
she had a quick sense of humor but about
three years ago I started thinking she
might be drinking too much because I was
noticing her hands were shaking she had
started to stutter and she was becoming
more and more reclusive two other things
were happening at that time she had
surgery to relieve some back pain issues
and she and her husband started going
through a stressful separation but when
I tried to talk to my sister about her
health she was very defensive she
insisted she had the best doctors in
Buffalo which she did she assured us
that she had stopped drinking altogether
and we never saw her drink and she said
she was just taking xanax for some
anxiety so we accepted this we thought
that sounds okay and we trusted that she
was in good care and that was a really
big mistake and the minute I got that
call this past July it all clicked and I
knew all my suspicions or
right but at that time I still thought
it’s gonna be okay we have years ahead
of us to help her battle addiction and
so as I headed home
I brought a blank check and I started
looking up private rehab facilities in
New York State so when I arrived at
Kemah Mercy Hospital as I’m walking down
the hall I can hear my sister before I
see her and she’s moaning for something
that opioid dilaudid and when I walk
into a room jenny is radically
transformed I am not expecting this her
legs are bones her skin is an awful
jaundiced color and she has these clear
liquid bubbles all over her eyeballs
like a monster she’s in and out of
lucidity and she never stops moaning for
three days Colleen and I sleep at the
hospital every night we have to get up
about every 45 minutes to help Jenny
shuffle to the bathroom and I think this
is the hardest part for me because it’s
so sad watching her look up from the
portable toilet when we can’t make it to
the regular bathroom she’s embarrassed
even in her own state for three days I
put drops in my sister’s eyes I tried to
feed her and sure and I rub her swollen
feet we’re a close family but we are not
affectionate at all but that week I
remember holding my sister’s hand a lot
and touching her hair and I don’t think
I ever remember touching my sister’s
hair before and now I feel it all the
time am i writing it so one day for her
doctors come in and pretty abruptly tell
us we need to start making some
decisions that my sister’s dying from
liver failure but they say this like
we’ve been expecting it for years and we
already know it and we don’t so then
things start going very quickly do not
resuscitate orders get signed we move
down the hall to a hospice room and for
the first time in my life I see my
mother visibly shaken although I’ve
never seen her cry
Jenny dies two days later so in my
reality my sister has just died from
cirrhosis of the liver
from alcoholism and opioid addiction in
just six days but in reality she’d been
dying a long time before that right in
front of us she’d been drinking and
taking prescription drugs from the best
doctors in Buffalo for years and this
culminated this past year with her going
to her local emergency room to get
generous doses of dilaudid she lied to
us for years and while my heart is
broken I’m so angry
mostly I’m angry at Jenni for not
getting the help she needed I would have
done anything for my sister she never
asked I’m angry at myself for not being
more educated about addiction but I’m
also really angry at all those doctors
who kept giving her medication and a
system that is broken at every level and
plagued by silence and denial I hope no
one you love ever has to endure the
system because this is what they’re in
for
imagine someone you love is addicted to
prescription pain meds 21 million
Americans have substance use disorder
yet just one in ten get treatment so say
you’re one of the lucky ones what I
learned was addiction treatment was
intentionally set up to be completely
separate from mainstream health care and
mental health this was before we
understood the science of addiction
so the specialty treatment and meds that
you need are not going to be covered
under your insurance or there’s going to
be a waitlist because there just aren’t
enough resources in the system or your
doctor isn’t even licensed to prescribe
the meds you need less than ten percent
of American medical schools including
nursing schools and pharmacy schools
have a single class and addiction to
trained our health care professionals
but say you’re lucky like our family and
you can afford one time to pool your
resources for a private facility those
average more than 30 thousand dollars
for just a 30 day program but you have
an opioid addiction so that’s not going
to work for you you have a chronic brain
illness and you need medication assisted
treatment just like someone with
diabetes hypertension or asthma so the
one-size-fits-all abstinence based
treatment isn’t going to work for you
but you complete your 30 days and now
you have to get back to your real life
and manage your disease and in order to
do that you have to drive an hour every
single day to a clinic to get your meds
because again there’s not enough
resources in the system these are
probably some of the reasons why more
than 80% of people who struggle with the
struggle with opioid addiction relapse
so you relapse but this time you can’t
get prescription meds so you start
taking heroin and your nightmare begins
all over again but this time in the
criminal justice system and this is the
good news
these are though this is the one out of
10 people who gets treatment remember my
sister was part of the nine out of ten
people who didn’t get treatment and she
insists till the day she died no doctor
ever talked to her about addiction or
drug screening I don’t know if that’s
true I do know that none of her doctors
talked to us her family about addiction
and even if she did get treatment I
don’t think she would have survived that
mess the thing that’s the most
infuriating about all this is that the
awesome and dedicated health care
professionals and researchers in this
country already know how to fix this we
need to embed evidence-based treatment
in mainstream healthcare this means
treating opioid addiction as a chronic
illness just like diabetes hypertension
or asthma
it means routine drug screenings it
means faster access to care and
medication assisted treatment and
disease management so things like the
Affordable Care Act essential services
are part of how we fix this problem my
sister didn’t need a slick advertising
campaign or some condescending slogan
like just say no or don’t do drugs
she had a chronic illness and she needed
medication assisted treatment it would
be a very cruel thing to tell someone
with asthma just breathe but not give
them an inhaler we know how to fix this
we just need the political will to do it
so that I was preparing for this talk in
Washington DC in our digital service
office I was thinking about all the
posters and inspirational things we have
up in our space and you’ll recognize the
popular Margaret Mead quote never doubt
that a small group of thoughtful
committed citizens can change the world
because it’s the only thing that ever
has but there’s one poster that always
kind of scared me and it’s this idea
that no one’s coming to fix this it’s
just us and that’s how I feel with my
sister story when I read the news or
listen to our elected officials no one’s
really coming to fix this people are
talking about moving in the right
direction but no one’s actually doing
anything or at least they’re not doing
it fast enough so what can we do well as
thoughtful committed citizens we can all
demand that our elected officials do
their job and implement solutions that
work for patients not big pharma and not
drug wholesalers by the way those
stakeholders are doing just fine in this
crisis so what that means is a small
town like Kermit West Virginia with 392
people should not have one pharmacy that
over a two-year period receive nine
million hydrocodone pills we can all be
advocates and our professional roles as
well so if you are out there and you
work at a medical school we need more
classes on addiction in your curriculum
if you are out there and you’re a judge
start a drug court in your community if
you work in Congress or you’re a
lawmaker we need to support the
affordable care act essential services
and we need to strengthen agencies like
the drug enforcement agencies the DEA
who fights against illegal opioids
entering the country not weaken laws
because of pressure from lobbyists if
you work in health policy we need to
embed evidence-based treatment in
mainstream care if you work in an
insurance company make sure your company
is complying with parity laws and stop
denying addiction treatment claims
because you’re legally supposed to cover
those if you work in a hospital adopt
the 8 national principles of care if
you’re a teacher or you work in a school
Health Office focus on prevention and
early intervention
give kids accurate up-to-date scientific
information about substance use disorder
and if you’re a doctor we need to remove
those barriers so you can actually
prescribe people the medication they
need if you’re in government like I am
fight from the inside for the right
solution as family members and loved
ones don’t make the same mistakes I did
get educated and be aware if you have a
hunch something’s wrong it probably is
so talk to your family honestly and be
supportive ask your doctor questions and
parents talk to kids it’s been four
months and every day I wake up and I
can’t believe one of my sisters is dead
that week in July I tried to say goodbye
to Jenny and all the things I love you
I’m sorry
give me one more chance and I’ll do a
better job next time but there’s no
second chance for me so don’t make the
same mistakes I did thank you
[Applause]
you
narcan which is a drug that kind of
brings people back from the dead it
brought my sister back that’s Jenny
narcan’s used when someone overdoses on
an opioid these are drugs like heroin or
prescription pain meds like morphine
vicodin or some you probably haven’t
heard of like dilaudid
when a person overdoses their heart
slows down and their breathing slows
down and it becomes really hard to wake
them up from this state
so what narcan does is it blocks the
opioid and it reverses the overdose and
I didn’t know any of this six months ago
I’m not someone who struggled with
addiction I’m not a doctor I’m not a
social worker
I’m just someone’s sister who was
drafted into the frontlines of the
opioid epidemic earlier this year when I
got a call at work telling me to come
home that my sister Jenny was in the
hospital and had just been revived with
narcan I fly home that day and within an
hour of landing at the airport I’m
helping my sister shuffled to the
bathroom at the hospital because she can
barely walk I don’t know it yet but
Jenny will die in just six days from
cirrhosis of the liver from alcoholism
and opioid addiction she’s just turned
44 years old she’s never done any rehab
no interventions and my family has not
had a single conversation about
addiction I am completely blindsided
everyone in this room knows someone who
has died or struggling from addiction
more than hats at 175 American’s die
every day from overdose more than half
of those are from opioids I share my
story with you today so you’re not
blindsided like I was and you don’t make
the same mistakes that I did because
these are mistakes that I’ll regret the
rest of my life so here’s my story I’m a
very good problem solver I work at the
u.s. digital service which is a
technical startup in the White House we
were started by President Obama in 2014
and we’re going strong in the Trump
Whitehouse we’re about 200 engineers and
designers from companies like Google
Apple Amazon and Code for America we
sign up for two-year tours with
government to work on complex problems
that’s me in the middle and I joined the
digital service because I wanted to help
veterans mainly because my dad is a
Vietnam combat veteran and a Bronze Star
recipient although he’d never tell you
that here’s my family we grew up in
Buffalo New York I’m the oldest of three
sisters we all went to college my sister
Colleen is a nurse and lives here in
Saratoga with her family with her
husband and three kids and my sister
Jenny is sitting in front and she stayed
in Buffalo and she was a stay-at-home
mom she lived a middle-class suburban
life with her husband of more than 15
years and their two kids my parents will
celebrate their 50th wedding anniversary
next year they are hard-working
humble and very private people we go on
sister vacations our last one was Key
West and Colleen likes to sleep in so
Jenny stuck being my workout partner and
you can see neither of us has any idea
how to do yoga and we see each other
regularly I would describe Jenny as
smart athletic funny
she had a quick sense of humor but about
three years ago I started thinking she
might be drinking too much because I was
noticing her hands were shaking she had
started to stutter and she was becoming
more and more reclusive two other things
were happening at that time she had
surgery to relieve some back pain issues
and she and her husband started going
through a stressful separation but when
I tried to talk to my sister about her
health she was very defensive she
insisted she had the best doctors in
Buffalo which she did she assured us
that she had stopped drinking altogether
and we never saw her drink and she said
she was just taking xanax for some
anxiety so we accepted this we thought
that sounds okay and we trusted that she
was in good care and that was a really
big mistake and the minute I got that
call this past July it all clicked and I
knew all my suspicions or
right but at that time I still thought
it’s gonna be okay we have years ahead
of us to help her battle addiction and
so as I headed home
I brought a blank check and I started
looking up private rehab facilities in
New York State so when I arrived at
Kemah Mercy Hospital as I’m walking down
the hall I can hear my sister before I
see her and she’s moaning for something
that opioid dilaudid and when I walk
into a room jenny is radically
transformed I am not expecting this her
legs are bones her skin is an awful
jaundiced color and she has these clear
liquid bubbles all over her eyeballs
like a monster she’s in and out of
lucidity and she never stops moaning for
three days Colleen and I sleep at the
hospital every night we have to get up
about every 45 minutes to help Jenny
shuffle to the bathroom and I think this
is the hardest part for me because it’s
so sad watching her look up from the
portable toilet when we can’t make it to
the regular bathroom she’s embarrassed
even in her own state for three days I
put drops in my sister’s eyes I tried to
feed her and sure and I rub her swollen
feet we’re a close family but we are not
affectionate at all but that week I
remember holding my sister’s hand a lot
and touching her hair and I don’t think
I ever remember touching my sister’s
hair before and now I feel it all the
time am i writing it so one day for her
doctors come in and pretty abruptly tell
us we need to start making some
decisions that my sister’s dying from
liver failure but they say this like
we’ve been expecting it for years and we
already know it and we don’t so then
things start going very quickly do not
resuscitate orders get signed we move
down the hall to a hospice room and for
the first time in my life I see my
mother visibly shaken although I’ve
never seen her cry
Jenny dies two days later so in my
reality my sister has just died from
cirrhosis of the liver
from alcoholism and opioid addiction in
just six days but in reality she’d been
dying a long time before that right in
front of us she’d been drinking and
taking prescription drugs from the best
doctors in Buffalo for years and this
culminated this past year with her going
to her local emergency room to get
generous doses of dilaudid she lied to
us for years and while my heart is
broken I’m so angry
mostly I’m angry at Jenni for not
getting the help she needed I would have
done anything for my sister she never
asked I’m angry at myself for not being
more educated about addiction but I’m
also really angry at all those doctors
who kept giving her medication and a
system that is broken at every level and
plagued by silence and denial I hope no
one you love ever has to endure the
system because this is what they’re in
for
imagine someone you love is addicted to
prescription pain meds 21 million
Americans have substance use disorder
yet just one in ten get treatment so say
you’re one of the lucky ones what I
learned was addiction treatment was
intentionally set up to be completely
separate from mainstream health care and
mental health this was before we
understood the science of addiction
so the specialty treatment and meds that
you need are not going to be covered
under your insurance or there’s going to
be a waitlist because there just aren’t
enough resources in the system or your
doctor isn’t even licensed to prescribe
the meds you need less than ten percent
of American medical schools including
nursing schools and pharmacy schools
have a single class and addiction to
trained our health care professionals
but say you’re lucky like our family and
you can afford one time to pool your
resources for a private facility those
average more than 30 thousand dollars
for just a 30 day program but you have
an opioid addiction so that’s not going
to work for you you have a chronic brain
illness and you need medication assisted
treatment just like someone with
diabetes hypertension or asthma so the
one-size-fits-all abstinence based
treatment isn’t going to work for you
but you complete your 30 days and now
you have to get back to your real life
and manage your disease and in order to
do that you have to drive an hour every
single day to a clinic to get your meds
because again there’s not enough
resources in the system these are
probably some of the reasons why more
than 80% of people who struggle with the
struggle with opioid addiction relapse
so you relapse but this time you can’t
get prescription meds so you start
taking heroin and your nightmare begins
all over again but this time in the
criminal justice system and this is the
good news
these are though this is the one out of
10 people who gets treatment remember my
sister was part of the nine out of ten
people who didn’t get treatment and she
insists till the day she died no doctor
ever talked to her about addiction or
drug screening I don’t know if that’s
true I do know that none of her doctors
talked to us her family about addiction
and even if she did get treatment I
don’t think she would have survived that
mess the thing that’s the most
infuriating about all this is that the
awesome and dedicated health care
professionals and researchers in this
country already know how to fix this we
need to embed evidence-based treatment
in mainstream healthcare this means
treating opioid addiction as a chronic
illness just like diabetes hypertension
or asthma
it means routine drug screenings it
means faster access to care and
medication assisted treatment and
disease management so things like the
Affordable Care Act essential services
are part of how we fix this problem my
sister didn’t need a slick advertising
campaign or some condescending slogan
like just say no or don’t do drugs
she had a chronic illness and she needed
medication assisted treatment it would
be a very cruel thing to tell someone
with asthma just breathe but not give
them an inhaler we know how to fix this
we just need the political will to do it
so that I was preparing for this talk in
Washington DC in our digital service
office I was thinking about all the
posters and inspirational things we have
up in our space and you’ll recognize the
popular Margaret Mead quote never doubt
that a small group of thoughtful
committed citizens can change the world
because it’s the only thing that ever
has but there’s one poster that always
kind of scared me and it’s this idea
that no one’s coming to fix this it’s
just us and that’s how I feel with my
sister story when I read the news or
listen to our elected officials no one’s
really coming to fix this people are
talking about moving in the right
direction but no one’s actually doing
anything or at least they’re not doing
it fast enough so what can we do well as
thoughtful committed citizens we can all
demand that our elected officials do
their job and implement solutions that
work for patients not big pharma and not
drug wholesalers by the way those
stakeholders are doing just fine in this
crisis so what that means is a small
town like Kermit West Virginia with 392
people should not have one pharmacy that
over a two-year period receive nine
million hydrocodone pills we can all be
advocates and our professional roles as
well so if you are out there and you
work at a medical school we need more
classes on addiction in your curriculum
if you are out there and you’re a judge
start a drug court in your community if
you work in Congress or you’re a
lawmaker we need to support the
affordable care act essential services
and we need to strengthen agencies like
the drug enforcement agencies the DEA
who fights against illegal opioids
entering the country not weaken laws
because of pressure from lobbyists if
you work in health policy we need to
embed evidence-based treatment in
mainstream care if you work in an
insurance company make sure your company
is complying with parity laws and stop
denying addiction treatment claims
because you’re legally supposed to cover
those if you work in a hospital adopt
the 8 national principles of care if
you’re a teacher or you work in a school
Health Office focus on prevention and
early intervention
give kids accurate up-to-date scientific
information about substance use disorder
and if you’re a doctor we need to remove
those barriers so you can actually
prescribe people the medication they
need if you’re in government like I am
fight from the inside for the right
solution as family members and loved
ones don’t make the same mistakes I did
get educated and be aware if you have a
hunch something’s wrong it probably is
so talk to your family honestly and be
supportive ask your doctor questions and
parents talk to kids it’s been four
months and every day I wake up and I
can’t believe one of my sisters is dead
that week in July I tried to say goodbye
to Jenny and all the things I love you
I’m sorry
give me one more chance and I’ll do a
better job next time but there’s no
second chance for me so don’t make the
same mistakes I did thank you
[Applause]
you
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