The Invisible Epidemic of COPD

[Music]

invisible

epidemic that’s an unusual combination

of words

epidemic we all know i mean we’ve lived

through the last year

where we’ve heard it almost every day on

television

or some news media outlet but to have

the word invisible

juxtaposed gosh that seems odd

because usually by the time something

reaches epidemic proportion

we all know about it how could we have

an epidemic

at our doorstep and you not know

you’re probably thinking i bet she’s

going to talk about the next ebola virus

or maybe the next coronavirus it’s not

either of those

in fact four letters represent this

disease

it’s c o p

d chronic obstructive

pulmonary disease it’s a lung disease

that accelerates as you age it makes it

difficult

for you to breathe and it alters your

ability to do

daily activity okay i’m seeing you

you’re looking confused you’re thinking

how could it be this big and i’ve never

heard about it

don’t feel bad i’m a doctor and i hadn’t

even heard that much about it so let me

take you back about 10 years on my own

journey

we were working with a group of

physicians and scientists and we had

some national funding and we were

looking at large data sets

and we wondered if we looked at this

electronic medical record

could we find patients that might not

know they have a disease today or if

they have one today

if we intervened if we got to them

sooner

they might either get a cure or a better

outcome or at least a better quality of

life

i was excited i thought this sounded

like noble work

in fact i was already thinking cardiac

disease

that’s the number one killer in america

followed by cancer we’ll probably work

on those two

and i was knee-deep in my discovery

when a colleague tapped me on the

shoulder and got my attention

she said gene have you thought about

working on

copd i looked at her and i said

copd isn’t that the lung disease that

smokers get

i mean and if you have the disease

wouldn’t you already

know it how could work like mine help a

problem like that

she said first gene you’re wrong on both

counts

it’s not just a smoker’s disease and

millions

of people have the disease and don’t

know they have it

wow over the next few weeks and months i

began to learn from a variety of sources

my friend was right 30

million americans have copd

30 million to put that to scale that’s

like the population of north carolina

south carolina and georgia it’s actually

the

near population of all of canada it’s a

big

number wow but you know what’s more

interesting than the big number

is if you take that 30 million and

divide them in half

half of them have already been diagnosed

they’re seeing their doctor hopefully

they’re on the latest

medication regimen perhaps they’ve been

enrolled in virtual or

in-person pulmonary rehab they’re in a

support group and they’re optimizing

their outcomes

that’s what we would hope for those 15

million but there’s another 15 million

that look for all the world like them

but they’ve never been diagnosed

who are they and and how did we miss

that many people i think there’s several

reasons

why we’ve missed that many people one

reason is

this disease often imitates or mass

by other diseases so if you had a heart

attack two years ago and you’re a little

short of breath today

it’s easy to think i wonder if that

heart attack is keeping me from climbing

that flight of stairs

maybe it’s the arthritis kicking in and

you’re thinking i just can’t get around

like i used to

or just the fact of aging and you’re

thinking you know i’d really love two

kids

but i can’t keep up with the grandkids

anymore so i won’t be joining you

to disney world so underneath all those

things

while those may be present you could

still have

copd wow

now as a researcher you had me intrigued

so i started to do my own

discovery work and i started with the

most obvious factor

smoking well just like i thought

a lot of people who smoked ended up with

this disease

in fact of all the people with copd 75

percent of them have smoked

but that means 25 percent have the

disease

but they’ve never smoked well what’s

with those people

how did they get it i was even more

intrigued

so i thought let me start with some

graphs and some charts

so i rolled out a map electronically of

the united states and

we data analysts can populate it in a

variety of ways and i said show me

so to speak all the patients with copd

and i thought if smoking’s a factor i

bet there’s not much in utah

ghost a figure and there wasn’t but

there’s not even much in california

and there’s not but when i looked at the

rest of the united states it was not

evenly distributed in fact as i looked

along the appalachian mountain range

there was this deep density okay i saw

where your mind went

you’re thinking gene that’s tobacco road

that’s where tobacco has been

raised and farmed and packaged and sold

for years

well data scientists can pull out that

factor in fact

i removed the impact of smoking i even

one step ahead of you removed the impact

of exposure to coal dust

and it was still there it was still more

prevalent

than anyplace else in the united states

west virginia virginia

tennessee kentucky north carolina

now it’s getting personal because see

those are my people that’s where my

mom’s family’s from

and i’m thinking wow are we at a higher

risk for copd

so i thought it must be the genetics so

like a good scientist like pasteur i

went and tested myself

spitting the tube a few weeks later the

answer came back

lo and behold i tested as a person

deficient in an enzyme called alpha one

anti-trypsin alpha-1 is the disease

that’s most

recognized as the most prevalent form

of genetic copd

and there it was in my genes now

gratefully i’m a carrier and i don’t

have symptoms of it

but it made me think of so many people

in my family

people who i thought got short of breath

had frequent bronchitis

pneumonia lung disease maybe even use

oxygen so i started calling around the

family

and we started sharing notes back and

forth i also learned that it wasn’t just

my mom’s

family that was at risk see my dad’s

family had come from scotland

i’m a first generation immigrant and

a lot of people who immigrated from

scotland in england

and ireland besides bringing along

fiery redhead to women men who wore

kilts

a taste for fine whiskey they also

brought

copd wow who knew

i was at risk from both sides of the

family

so smoking location in fact just living

in a rural community

you have twice the rate of copd

than living any place else in the

country maybe it’s your genetics

maybe it’s poor air quality

pollution smoke fire

perhaps you work in a foundry perhaps

you work on a farm perhaps you’re in a

paint plant

all those things that you inhale impacts

your lungs over time

and it takes its toll wow

you know i think about 9 11 i think

about the brave

men and women who were the first

responders who ran into those

flaming towers if they were so fortunate

as to be able to leave the building

alive

i assure you they left with copd

even this year with the fires on the

west coast

in california in oregon not only are the

first responders

at risk so were the people whose homes

were affected

the people whose cities were covered

with smoke

by the year 2050 poor air quality

will be the leading cause of copd

around the world in fact 300

million people around the world have

copd

so it’s not just an america problem it’s

a global problem

now in 2050 when we refer to it as poor

air quality

smoking will still be there it will

still be a cause

it just won’t be the cause

it will be one of the causes

so genetics poor air quality

childhood asthma childhood asthma is the

leading chronic condition

of children it’s not surprising to me as

a doctor

that the asthma that seems so innocent

at first is also the asthma that can

scar

and cause the lung to remold making it a

set up for altered patterns

of breathing later in adulthood we also

know that

vaping and e-cigarettes are going to

create

lung conditions that we have not seen

before

and last but equally as important is

covet

covets a pulmonary disease it’s a lung

disease

we are in the early stages of learning

what it’s like

to have a postcovid world and will that

accelerate copd

in so many people so there’s lots of

reasons

somebody could have copd now as a doctor

i always try to picture what does that

person look like

with copd’s or any disease for that

matter but for copd

first of all i think of the person with

a chronic cough

a lady sat behind me in church one week

and she was coughing frequently

and this is long before covet and she

leaned over and she didn’t know who i

was and she tapped me on the shoulder

and she said don’t worry i’m not

contagious i have copd

so is that person with a chronic cough

frequent bronchitis needing antibiotics

having emphysema may actually require

oxygen

limited steps you probably have seen

them

but maybe never really stopped to think

about them

my generation of women we were

encouraged to smoke we were told we had

come a long way baby

and we did not only did we come a long

way in smoking

we also came a long way in copd because

not only do we get the disease we get it

earlier in life and we get it with a

heavier

burden of symptoms so we’re hit

on two counts

what do we do when we see something like

this well i mentioned i try to

personalize it

let me give you a peek into somebody in

my family that i think

represents this she’s female she’s older

in fact she’s aunt bernice see and

bernice lived all

her life in the appalachian mountains in

the foothills of the smokies to be

exact she worked in a factory she

upholstered

chairs she was always fit as far as i

knew i never knew her overweight

and i never knew her to smoke when the

other ladies at the plant

would take a lunch break or smoke break

aunt bernice would go for a walk and so

even up into her 80s

she would be walking four or five miles

a day

so when she finally retired she called

me one night

and as one of the doctors in the family

it’s not unusual for us to get a call

from a family member asking us to

explain something medical

so she said jane anne jean anne this

is your aunt bernice and i knew

for her to call something must be up and

i said well well what’s up

and she said something ain’t right i

can’t walk to the mailbox okay

she’s 80 years old and been walking four

to five miles a day

and she notices change in daily activity

is significant for her well i had been

thinking about copd

i thought about our family genetics i

thought about how she lived in

appalachia

i’ll write her doctor and i’ll get her

doctor to check

her lung health so i wrote him and a few

weeks later

i got back a letter dear dr wright

i have examined your aunt bernice i have

good news

she doesn’t have copd

i was relieved but then he went on to

say

because she never smoked

period ended the workup

see because she never smoked he never

stopped to think about

she had worked in a factory she’d been

around smokers her husband had been a

lifetime smoker

alpha won anti-trips and runs in our

family and she lives in a rural zip code

i think he missed it now we are blessed

with the genes for longevity for the

women in our family and she lived a long

life

but i would tell you the last 10 years

of life she did not live an active life

because she no longer could do the

things that were important to her

you know visiting her friends going to

the church covered supper

going to the buffet at the mall because

she didn’t quite

have the energy and stamina for that

all right when we figure out that

there’s an epidemic here in the united

states

what do we do about it it’s the american

spirit we double down right the

scientists go to work

they start looking for the cause they

look for cures industry starts cranking

out new

vaccines we see that currently right now

going on

all around us the word gets to

clinicians and doctors begin to talk to

patients

and they begin to ask them could you

have the symptoms

of whatever the new disease is

so let me ask you for a second think

about your last time at the doctor’s

office did she

or he ask you about your lung health

i probably know the answer it’s probably

no they might have asked you did you

ever smoke and you checked the box one

way or the other

but did they ask you about your lung

health you know lord knows they do a

myriad of tests

your blood pressure an ekg a hemoglobin

a1c

why don’t they do a test for your lungs

well you’re wondering it must not exist

or it’s too expensive

i wish that were the case but that’s not

true almost every doctor’s office

has access to spirometry

it’s a simple straightforward test they

hook you up to a machine

you breathe in and out and they measure

the volume of air that goes in and out

and they measure how quickly the air

goes in and out

within a few minutes you can have a

diagnosis

but you can only get that test at a

doctor’s office a hospital a pulmonary

rehab lab

what if you could get to it without a

doctor’s prescription what would be the

harm in that

you know the other day i was at a

grocery store chain

and i had gone up to the pharmacy to get

my annual flu shot

so while i had one arm all

pushed up for the flu shot i looked and

saw the blood pressure machine

over there and i thought maybe after all

this

i’ll go get my blood pressure checked

now i have one of those machines at home

and i do it frequently but i thought it

won’t hurt just

just to check what if next to that blood

pressure machine

there had been a way to do spirometry

what if i didn’t have to go through the

doctor’s office cue to do it

maybe just screen me to see do i need

more of a workup i’ll tell you here’s a

quick and easy work around

the next birthday party that you’re at

carefully remove one of the birthday

candles

and hold it at arm’s length

if you can blow it out at arm’s length

your lungs are probably in pretty good

shape

but if you can’t that should be a

warning sign to you

to have this conversation with your

doctor

so we usually do all these things when

we have epidemics we also have advocacy

campaigns you know just just right

driving here today i saw several

billboards

i saw one about hepatitis c i saw one

about the flu vaccine

i even saw one about getting a

colonoscopy it was pretty cute it said

there’s no buts about it and it had some

humor written into it

where was the billboard about copd

in fact where have i ever seen a

billboard about copd

i haven’t in fact where

are the famous faces of copd

actors actresses politicians athletes

uh you got me there too i can’t think of

one now i’m old enough as a doctor that

i remember the early days of hiv

and aids and i knew how critical

it was to creating knowledge across the

country

for brave men and women to step forward

and say

either i’m hiv positive or i have aids

or later on

i have mental health or somebody in my

family has alzheimer’s

it’s those powerful voices of influence

that can alert a community in ways that

nobody else can

but we don’t have those we also know

that we need

more research right from research comes

new drugs new cures new treatments copd

is the third leading cause of death it’s

heart disease

cancer copd number three

but it’s 165th

in terms of nih funding third most

common disease

third most lethal disease 165th

in funding now i’m not blaming the nih

they’re doing a great job and they’re

trying to get the word out but the nih

can only do what congress mandates them

to do what congress gives them the

budget to do

and congress is moved by voices like

yours and mine that cause them to pay

attention to a problem

to vote in new legislation and to

redirect funding

and it simply hasn’t happened

there has not been a new drug

new category of drug for this illness in

11

years that’s a long time to have your

finger

on the pause button i can tell you we

would not tolerate that

for cancer or heart disease or

prematurity or any other

kind of disease but 11 years to be

waiting

on the next drug is way too long

so what if you and i partnered

and we decided we were going to do

something different

we were going to start a movement so

that we could find

the missing millions you know that

we can do this it’s really

that simple because now you’re armed

with some new information

and there’s lots of places you can go

online to learn additional facts

i would encourage you to start with

yourself

ask yourself am i at risk for copd

start a conversation with your doctor

and say could you please check my lung

health

and see if i need spirometry or other

some other form of

measurement of my lung capacity have an

intergenerational conversation this fall

with your family

talk to them grandma grandpa mom and dad

aunt and uncle

tell them what you’ve learned about copd

you know i’m a analytic geek at heart

and there’s an amazing thing that

happens

in the spread of numbers if i can get

two of you today to take this message to

heart

and go tell two more people and they

take it to heart and they tell two more

people

and they take it in 32 cycles

we will have reached 7 billion

people the entire population of the

globe

now i am aspirational but not that much

frankly i would be happy

if we could reach those 15 million

americans

who have the disease and don’t know it

it starts with you it starts with your

health

it starts with your conversations and

together

we can make the invisible

visible

thank you

[Applause]

for those 15 million