Taking Her Breath Away - American Lung Association

Transcription

Disparities in Lung Health Series
Taking
Her Breath
Away
The rise
of COPD
in women
Preface
I have personal experience in living with and trying to persevere with a severe lung disease,
COPD, that at present has no cure. I was diagnosed with very severe COPD in 2001, and consider
myself fortunate to have had access to the best available medical care and treatment. Over these
thirteen years, I have become a patient advocate for those who have no voice; attempting to raise the
level of awareness of COPD.
Sadly, COPD is now a disease in which women have reached a grim parity with men. In the
American Lung Association report you are about to read, you will learn that since 2000 the disease
has actually claimed the lives or more women than men in this country each year. Twelve years after
my own diagnosis, COPD is still under-diagnosed and under-treated. This alarming and important
information in “Taking her Breath Away: The Rise of COPD in Women”, gives voice to the millions of
women living with this disease.
In this sixth volume of their “Disparities in Lung Health Series”, the American Lung Association
heralds a sense of urgency and asks that our leadership in public health and healthcare invest muchneeded attention and resources to address COPD.
There are many good people and organizations toiling in the vineyards for COPD, but I want to
challenge all of us to do even more. As you read this report and consider the call to action, please
keep in mind those of us who try to live with dignity while our ability to breathe and to function
diminishes. We who have COPD can take pride in what we accomplish, can hope to better control
our symptoms, can hope to improve our quality of life. We can hope that we are closer to better
treatments and to the day when cures for COPD are finally reality.
Courage!
Grace Anne Dorney Koppel
Patient Advocate
NIH, National Heart Lung Blood Institute “Learn More, Breathe Better” Campaign
COPD Foundation, Board Member
Jean R.
Jean lives in Iowa and started having trouble
breathing in 1985. She was convinced it was
because she was overweight and “out of shape”.
At first diagnosed with asthma, in 2000 she was
diagnosed with COPD. By 2002 she was on oxygen
24 hours a day, and in 2003, Jean was in the
hospital and in respiratory failure. According to
Jean, her doctor “laid the cards out on the table”
and told her that if she wanted to survive with any
quality of life, she needed to lose weight, exercise
and follow her treatment plan.
Jean fortunately had quit smoking in 1992,
after 30 years of cigarettes. She used that same
determination to lose 100 pounds and build up
an exercise program. She also became a patient
advocate for COPD, learning all she could and
participating in support groups.
Today Jean says she is like a new woman. She
no longer needs to use oxygen and still follows
her treatment plan. She does notice that on days
when the air quality outside is poor, she has to be
very careful and has difficulty breathing. Today she
fights for clean air and healthy lungs for all.
Marilyn K.
Marilyn was born in 1925 in Detroit, Michigan.
With a master’s degree in education, she was
instrumental in developing the Head Start program
in Detroit. As a child she often had bronchitis. Like
many of the “modern” women at the end of World
War II, she began to smoke cigarettes at age 20
and quit when she was 35. Following several bouts
of pneumonia, she was diagnosed with COPD
shortly after 2000.
She continued to be active, even after needing
to use portable oxygen starting in 2006. Up until
2012, Marilyn was the one who still drove her
car, picking up and taking her friends to events.
Eventually, she developed peripheral artery disease
and needed 5 surgeries in 16 months, having
greater difficulty with healing after each. Her
progressive COPD and diminishing quality of life led
her to say “I’m on a slippery slope with this disease
and really don’t want to continue on like this”.
This vibrant, lovely mother of seven, did not
survive her final surgery in January 2013. She
leaves a legacy of perseverance and learning for
so many.
Taking
Her Breath
Away
The rise
of COPD
in women
Introduction
Chronic obstructive pulmonary disease
(COPD) is a progressive lung disease that slowly
robs its sufferers of the ability to draw lifesustaining breath. It is the third leading cause
of death in the United States, surpassed only by
heart disease and cancer, and is not decreasing
nearly as quickly as the other two. There is no
known cure. Because most people with COPD
have a history of smoking, it was for many years
thought of as a disease of older white men, who
have, as a group, smoked at higher rates over a
longer time than any other. But as gender roles
and smoking behavior have changed in recent
decades, so too has the profile of COPD. The
number of deaths among women from COPD
has more than quadrupled since 1980, and since
2000, the disease has claimed the lives of more
women than men in this country each year.
1
Taking Her Breath Away: The Rise of COPD in Women
Women are biologically, emotionally
and culturally different than men, and these
differences impact the way they experience
COPD. A growing body of evidence suggests that
women may be biologically more susceptible to
the lung damage caused by tobacco smoke and
environmental pollutants. Women with COPD
tend to develop the disease at a younger age,
and are more likely to be of lower socioeconomic
status. Women are also less likely to be diagnosed
properly with COPD than are men who go to their
doctors with the same histories and symptoms.
Women living with COPD have a more difficult
time quitting smoking, have more disease flareups and use more healthcare resources. They also
suffer more from co-occurring chronic conditions,
including depression, and have an overall lower
quality of life.
The rising toll of COPD in women in the U.S.
is inextricably linked with the history of tobacco
use and the marketing efforts of the tobacco
industry over the past 100 years. Starting in the
1920s, changing gender roles and aggressive
targeted cigarette advertising contributed to
2
a dramatic increase in smoking rates among
women. Sadly, those old TV ads that declared
to women “you’ve got your own cigarette now,”
have resulted in a steep rise in COPD and other
tobacco-related illnesses in those women as
they have aged. It may be decades before the
health consequences of the tobacco boom among
women are fully realized.
Fortunately, there are a number of positive
steps that can be taken to make a difference
in the burden of COPD in women now. These
include continuing the expansion of laws and
policies that reduce tobacco use and exposure
to secondhand smoke, increasing the focus
on women and gender-specific treatments in
COPD research and clinical trials, and making
changes to healthcare practices that will improve
diagnosis and referral to services such as
tobacco cessation counseling and pulmonary
rehabilitation for women. Most importantly, the
leadership in public health and health care at the
national, state and local levels must embrace
a sense of urgency and invest much-needed
attention and resources in addressing COPD.
American Lung Association www.Lung.org
A Greater Burden of Disease
The numbers, like the disease itself, are
breathtaking. More than 7 million women
are living with COPD, and millions more have
symptoms but have yet to be diagnosed. COPD
is a disease that brings with it a heavy burden
on patients and families. It often means years
of poor health, lost productivity and healthcare
expenses. Women with COPD experience the
disease differently than men, in ways that
increase their burden and decrease their quality
of life.
1-800-LUNGUSA
When looking at COPD deaths as a
proportion of the total male and female
population, a slightly more nuanced picture
emerges. After adjusting for differences in age
distribution, the rate of COPD deaths is still
somewhat higher in men than in women (48.6
out of every 100,000 men compared to 36.6
per 100,000 women).2 However the rate of men
dying from COPD is slowly decreasing, and the
rate of women dying from the disease is not
changing. The converging death rates reflect
the increasing burden on women.
More Deaths: 10 Years and Counting
In 2009, nearly 70,000 women in the U.S.
died the slow, long-suffering death that COPD
brings.1 This was more deaths than the year
before, which was more than the year before
that. In fact, the number of deaths from COPD
among women has quadrupled since 1980.
Before then, COPD was primarily a disease of
men. In 1979, the number of men dying from
COPD was almost three times that of women.
By the year 2000, COPD had claimed the lives
of more women than men for the first time, and
women now account for roughly 53 percent of
all deaths attributed to COPD in this country.2
(Figure 1)
Figure 1
COPD Deaths by Sex
80,000
Women
Number of Deaths
70,000
60,000
50,000
Men
40,000
30,000
20,000
10,000
0
1979
1989
Year
1999
2009
CDC. NVSR, 1979-2009.
3
About COPD
COPD is a lung disease that makes it progressively
harder to breathe. The word “obstructive” in COPD
means that the flow of air in and out of the lungs is
reduced. COPD comprises two main conditions—
chronic bronchitis and emphysema—which can
coexist. With chronic bronchitis the lining of the
airways becomes swollen and produces a lot of
mucus. With emphysema the walls of the air sacs
in the lung get broken down, the air spaces get
larger and stale air gets trapped.
More than 14 million people have been diagnosed
with COPD, and as many as 24 million may
actually have the disease, including many who
are undiagnosed.3,4 Smoking is the major cause
of COPD. Pollution or irritants in the air can also
cause COPD. A small number of people have a rare
inherited form of COPD called alpha-1 antitrypsin
deficiency (AAT) which occurs about equally in
men and women. Lung infections such as a cold
or some other illness, or exposure to harmful
pollutants can also cause a sudden worsening
of COPD symptoms known as an exacerbation,
or disease flareup. Exacerbations can result in
hospitalization and accelerate the loss of lung
function, eventually leading to serious long-term
disability and death. COPD is often not diagnosed
until the disease is very advanced, because
people do not recognize the early warning signs.
Sometimes people think they are short of breath
or less able to do the things they are used to doing
because they are “just getting old.”
Although there is no known cure for COPD,
there is much that can be done to treat and help
manage the disease if it is found early. The goals
of treatment for COPD are to relieve symptoms,
prevent disease progression, reduce the frequency
and severity of disease flareups, improve health
status, increase exercise tolerance and prolong
life.5 The type of treatment changes with the
needs of the patient, depending on the severity of
their disease. The most important first step is to
protect the lungs from further damage by quitting
smoking, reducing exposure to air pollutants
4
and keeping up with influenza and pneumonia
vaccinations. Patients with mild COPD are often
prescribed a quick-relief inhaled medicine to use as
needed. If that does not control symptoms, other
medications are added. Pulmonary rehabilitation
programs, which combine exercise therapy with
education and support, have been shown to help
control symptoms and improve daily functioning
at all stages of disease. Patients with severe
COPD should add long-term oxygen therapy and
consider surgical intervention.5
Figure 2
COPD Prevalence by Sex and Age
Figure 3
COPD Prevalence by Income and Sex
15
Percent of Population
Percent of Population
■ Women
■ Men
10
5
0
45-64
Age Group
65+
CDC. BRFSS, 2011.
More Cases: The Trend Continues
Of the 14.7 million people who have been
diagnosed with COPD, 58 percent of them are
women. After taking into account the differences
between the sexes in age, ethnicity, income,
education and smoking status, women are 37
percent more likely to have COPD than men.3
COPD usually takes many years to develop,
and the prevalence of the disease in both women
and men increases with age. Women have higher
rates of COPD than men throughout most of
their lifespan, although it appears that they are
especially vulnerable before the age of 65. When
controlling for differences in ethnicity, income
and education, women ages 45-64 are 51
percent more likely than men of the same age to
have the disease. This drops to 21 percent more
likely when comparing women and men 65 years
of age and older.3 (Figure 2)
1-800-LUNGUSA
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>$50K
$35-$50K
$25-$35K
$15-$25K
<$15K
Income
CDC. BRFSS, 2011.
The profile of the “typical” woman with COPD
is not that different from the “typical” man with
the disease. She is most likely to be white, to
reside in a southeastern or Appalachian state and
to have an income below the poverty level.6 There
is however a striking difference between the sexes
in the connection between income level and rates
of disease. Like tobacco use, COPD is primarily
a disease of the poor, and prevalence rates for
both women and men rise as income levels fall.
But poverty appears to have a greater impact on
women, whose rates of disease rise more sharply
as their income level falls.3 (Figure 3)
5
About the Data
There are two national surveys that collect data on
COPD prevalence—the National Health Interview
Survey (NHIS) and the Behavioral Risk Factor
Surveillance System (BRFSS). The NHIS is the
principal source of information on the health of
the civilian, noninstitutionalized population of the
United States. Survey respondents are asked two
separate questions:
Have you been diagnosed with chronic
bronchitis in the past 12 months?
Have you ever been diagnosed with
emphysema?
Unfortunately, combining data from these
two questions for an overall estimate of COPD
prevalence would result in an overestimation of
disease as many individuals report diagnoses of
both diseases.
More Illness, More Health Care
COPD patients consume enormous amounts
of health care over the course of their illness.
Even when doing well, they juggle numerous
doctor visits and multiple prescriptions. Women
with COPD have more frequent disease flareups,
have more co-occurring conditions and use more
healthcare resources than men. Between 1995
and 2004, outpatient visits for COPD made by
women increased 54 percent while visits by men
increased only 1 percent, with women surpassing
men for number of visits in 2000.7 Since 1993,
women have also surpassed men in number of
hospitalizations due to the disease. In 2010, 57.2
percent of the 715,000 hospital discharges due
to COPD were in women.8
6
Most older COPD patients are also dealing
with one or more other serious chronic
conditions, including cardiovascular disease,
hypertension and diabetes, many of which
are also closely associated with a history of
tobacco use and exposure to cigarette smoke.
Osteoporosis, depression, stroke, congestive
The Behavioral Risk Factor Surveillance System
(BRFSS) provides COPD prevalence data by state.
In contrast to the NHIS, the BRFSS uses one
question to assess overall COPD prevalence:
Have you ever been told by a doctor or health
professional that you have COPD, emphysema
or chronic bronchitis?
Data from 2011 mark the first year that questions
on COPD prevalence estimates by state are
available. To allow for better comparison between
the methods of the two surveys and the effect of
phrasing the question differently, future versions
of the NHIS will include the COPD question from
the BRFSS.
heart failure, inflammatory bowel disease
and diabetes have all been reported as more
common in women compared to men with
COPD.9–11 The research on heart failure and other
cardiovascular disease has yielded conflicting
results, with some studies finding that men with
COPD are at greater risk from cardiovascular
diseases than women with COPD, and other
studies finding the opposite.11,12
These multiple diseases and their treatment
can interact in damaging ways. For women with
both COPD and cardiovascular disease, low levels
of oxygen in their blood increases stress on the
cardiovascular system. Some of the medications
that are used to treat COPD also pose a risk to
cardiovascular health. More than half of all COPD
patients have osteoporosis, and the condition
is more common in women than men. It is
also potentially worsened by the use of steroid
medications. Osteoporosis can have a dramatic
effect on the health status and prognosis of women
with COPD, as a single broken vertebra can result
in a 4-8 percent decline in breathing capacity.13
Greater Risk and Susceptibility
The degree to which a person is at risk of
COPD depends on the interplay of two factors:
their level of exposure to disease-causing agents,
such as tobacco use or environmental toxins;
and their personal susceptibility, which depends
on genetics, age, overall health status and other
variables. The reasons why women face a higher
burden of illness and death from COPD than men
are a complex mixture of both factors. Socially
constructed gender roles have resulted in disparities
in exposure to harmful environments. And biological
gender differences appear to make women more
susceptible to harm from those exposures.
Smoke and Mirrors: Changing Gender Roles
and the Influence of the Tobacco Industry
Smoking is well established as the primary
cause of COPD. Inhaled smoke, either directly
from smoking or from secondhand smoke, causes
inflammation of the airways in the lungs. Tobacco
smoke contains thousands of chemicals that are
broken down into substances that cause irritation
and inflammation in the lung. As a person
continues smoking, damage to the lung tissues
builds up and results in chronic inflammation and
even destruction of airways in the lung, which
eventually may result in the onset of COPD.
Cigarette smoking was rare among women
in the early 20th century, but started increasing
after advertising targeting women began in
the late 1920s. Lucky Strike was one of the
more prominent tobacco companies at the time
that launched an extremely successful “Reach
for a Lucky Instead of a Sweet” campaign,
which focused on women’s concern about their
weight.14 These advertising trends resulted in
gains in the number of female smokers and
lasted through World War II, when a large
portion of women entered the work force. In
1968, Philip Morris introduced Virginia Slims, the
first cigarette created specifically for women.
With the advertising slogan “You’ve Come a
Long Way Baby,” and imagery that emphasized
autonomy, glamour and thinness, Virginia Slims
was massively appealing to women’s newfound
sense of liberation.
1-800-LUNGUSA
By 1973, less than six years after the
introduction of Virginia Slims, the rate
of 12-year-old girls who had started
smoking increased by 110 percent.15
These days, the tobacco industry
continues to prove itself remarkably adept at
identifying and targeting women’s interests and
vulnerabilities. In 2007, R. J. Reynolds launched
Camel No. 9, a cigarette packaged in a black
box with hot pink and teal colors. The products
were advertised as “Now available in stiletto”
and “dressed to the 9s.” The next year, Philip
Morris debuted a new “purse pack” version of its
Virginia Slims, the designs of which were quite
similar to women’s cosmetics.16
Fortunately, thanks to a growing awareness
of the health effects of smoking, coupled with
the rise of the tobacco control movement, the
percentage of women and men who smoke has
been declining.17 However, this decrease has
not yet impacted COPD death rates in women,
since some of those young Virginia Slims girls
are still getting sick. As with many chronic
conditions, COPD has a lag period between when
one starts smoking and the onset of the disease
itself, during which lung damage accumulates
and progresses into irreversible damage.18 The
smoking rate among women did not increase
until a much later date than men, and even then
remained noticeably lower. Similarly, the COPD
death rate for men increased earlier than among
women and has remained somewhat higher,
although the gap is narrowing.2,19 (Figure 4)
7
Figure 4
Time Delay Between Smoking & COPD Death — By Sex
Percent Smoking and
COPD Deaths per 100,000
60
50
40
Men
■■■■■ Percent Smoking
■ ■ ■ COPD Deaths
Women
■■■■■ Percent Smoking
■ ■ ■ COPD Deaths
30
20
10
0 '
1900
'
1910
'
1920
'
1930
'
1940
'
1950
Men began
smoking earlier
than women
World War II.
Smoking
becomes socially
acceptable
'
1960
1964 Surgeon
General’s
Report
recognized
harm of
smoking
'
1970
'
1980
'
1990
'
2000
'
2010
1971 – Eve
2007 – Camel No. 9
Women began
smoking in the
1920s
1968 - Virginia
Slims “you’ve
come a long
way, baby”.
8
CDC. NHIS and NVSS.20
More Harm from Environmental Exposures
Exposure to environmental pollutants
occurs at home, at work, in public places and
outdoors. If women are more at risk of COPD
from smoking, it would seem plausible that
other pollutants might also affect them more
than men. Unfortunately, very few studies on
the impact of occupational or environmental
exposures on COPD have examined specific
differences between the sexes.21 However, the
fact that women with COPD are 1.5 times more
likely to have never smoked than men with
COPD (29 percent compared to 19 percent)
indicates that women are more susceptible to
lung damage from secondhand smoke and other
pollutants.3 There is some evidence that this
increased vulnerability starts in early childhood.
Several studies in children have found that
exposure to environmental tobacco smoke and
air pollution causes a greater reduction in lung
growth and breathing ability in girls than in
boys.22,23
Secondhand smoke is one of the major
environmental contributing factors to the
development of COPD. It contains the same
harmful particles that cause inflammation
and damage to the lungs as direct smoking.
Most secondhand smoke exposure occurs
in the workplace and in the home, and as
smokefree workplace policies have become more
widespread, the home is increasingly the source
of greatest exposure for family members, most
often women and children.24 A U.S. study found
that women who are exposed to similar levels of
secondhand smoke have a greater risk for lung
damage and disease than men.25
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According to a national health survey,
almost 15 percent of deaths from COPD are
attributable to occupational exposures to harmful
materials.26 Women with jobs in personal
services, agriculture, textiles, rubber and plastics
and sales all had higher risk of developing COPD
than men doing comparable work. Women are
particularly sensitive to biological dusts, such
as pollen, animal dander, insect parts, fungi and
bacteria.27 Exposure to biological dust, along
with mineral dust and gas fumes, significantly
increases the chance of developing COPD later
in life for women, but not in men, with the risk
increasing with the duration of the exposure.28
Some of the jobs in which women face higher
exposure to biological dusts are in health care,
food and textile manufacturing, visual arts and
cleaning.
Outdoor air pollution also appears to affect
women’s respiratory health more than men’s,
although the evidence is somewhat mixed on
whether women are more susceptible, or more
exposed or perhaps both.29 Living near a busy
roadway exposes residents to high levels of
particulate matter air pollution, which is known
to cause significant illness and death from
respiratory and cardiovascular causes. Several
researchers have found that long-term exposure
to traffic-related pollutants reduces lung function
in urban women, and increases their risk of
developing COPD.30,31
9
Biological Differences Increase Susceptibility
While smoking and other harmful exposures
partially explain why COPD rates in women have
risen so drastically in the past decades, the
numbers do not quite add up. Women are less
likely than men to smoke, and those who do
smoke consume on average fewer cigarettes per
day.32 Yet for the same amount of tobacco use,
women are more likely to develop symptoms of
COPD earlier, and have more severe disease.25
Something else is clearly going on. There is
growing evidence that women are biologically
more susceptible to COPD. A uniquely female
combination of anatomy and physiology results
in more harmful particles getting into the
lungs and staying there, where they cause an
exaggerated immune response that actually
increases the damage done in the airways.22
Female lungs are smaller than men’s, with
narrower airways and less respiratory muscle
to power inhaling and exhaling.25,33 As a result,
the concentration of cigarette smoke and other
lung irritants is higher within the lung airways of
women when inhaled. Studies have also found
that female smokers inhale deeper and hold their
breath for a longer time than male smokers.34
This means there is greater exposure to these
damaging toxins. The smaller structure of the
lungs also makes women more susceptible to a
condition called bronchial hyper-responsiveness.
This is a condition where the lung’s airways
narrow too easily or too much in response to
stimuli like smoke and allergens. The affected
airways become thickened and inflamed, which
makes breathing more difficult and damages
tissue over time. In women, cigarette smoke
is the primary contributor to bronchial hyperresponsiveness, but has little to no effect on the
development of the condition in men.22,32
Female sex hormones, specifically estrogen,
play a role in worsening the lung damage from
smoking in women as well. Estrogen increases
the rate at which nicotine is broken down in the
body, but it does not increase the rate that the
body gets rid of these harmful compounds. As
one continues to smoke, the harmful compounds
build up in the lung more for women, causing
stress to the lung and damage to the organ.22,32
This increased metabolism of nicotine may also
explain why it is much more difficult for women
to quit smoking than men.
Exposures and Susceptibilities = Increased Risk
Direct
Smoking
Workplace
pollutants
Secondhand
Smoke
Estrogen
Outdoor air
pollution
10
Anatomical
differences
Under-Diagnosed and Under-Treated
Although gender differences in COPD
treatment have not received adequate attention,
it is clear that women with COPD have some
serious challenges and special needs that
impact their ability to manage their disease and
maintain their optimal health. These include
delay in getting properly diagnosed, greater
difficulty maintaining abstinence from smoking,
higher rates of anxiety and depression and lower
overall quality of life.
Gender Bias in Diagnosis
The first step in getting proper treatment
for any condition is getting a proper diagnosis.
For women with COPD, that can be a problem.
Because COPD has long been thought of as a man’s
disease, many clinicians still do not expect to see
it in women and so miss the proper diagnosis. This
gender bias is consistent with a well-established
pattern in diagnosing other tobacco-related diseases
such as coronary artery disease.35
1-800-LUNGUSA
When a patient goes to her doctor to discuss
breathing problems, the doctor must interpret
the information provided to form a diagnosis.
It is a subjective process in which the doctor
naturally draws upon his or her own perceptions
and experiences. One researcher confirmed this
situation by presenting physicians with a case
study that included symptoms, medical history
and smoking behavior typical of someone with
COPD. Half of the physicians were told that the
hypothetical patient was female, and the other
half were told that the patient was male. Only
a slight majority of the physicians correctly
identified COPD as the most probable diagnosis.
And those who thought the patient was female
were significantly less likely to be correct.
Asthma was the most common alternative
diagnosis, especially for the female “patient.”35
Women are definitely underdiagnosed and under-treated.
It is tragic to hear our patients
express disappointment that they
suffered so long before their disease
was recognized.
– Chris Garvey, RN
11
Although physical symptoms and a history of
exposure to risk factors are valuable indicators
of COPD, the recommended way to diagnose
COPD is to also perform a standardized breathing
test known as spirometry.5 Unfortunately,
spirometry is widely underutilized, particularly
in primary care settings where most initial COPD
diagnoses are made. One large global study of
COPD patients found that only 40 percent of
all participants reported ever having had the
test. Here again gender bias put women at a
disadvantage. The researchers found that even
after adjusting for disease severity and smoking
history, women were less likely than men to have
been given a spirometry exam.36
We need to address the issue
of training physicians to
diagnose COPD properly.
Spirometry is required to
make a correct diagnosis.
– MeiLan Han, M.D.
12
Effectiveness of Medications
Research into the question of whether COPD
medications work the same way in men and
women has yielded conflicting results.10,37 There
has been little investigation at all of how gender
differences in body size and shape affect the
way inhaled medicines get into the lungs.38,39
Historically, the proportion of men in COPD clinical
trials has ranged from 65 to 100 percent. Since
the mid-1990s, sensitivity to the need to include
women in research studies has increased, and the
U.S. Food and Drug Administration now requires
that drug safety and effectiveness trials include
women. It is important to note, however, that just
including women in research does not solve the
problem unless researchers specifically evaluate
gender differences in response to drug therapies.39
Access to Care
COPD is an expensive disease, often
involving large healthcare costs for disabled
patients who have reduced or no ability to earn a
living. A large phone survey of men and women
with COPD conducted in 2006 found that lack
of or inadequate healthcare coverage had a
substantial negative impact on COPD patients’
use of crucial health services. More than a
quarter of the respondents said that cost or lack
of insurance coverage had kept them from going
to the doctor, filling a prescription or going to the
hospital.40 Although this study did not analyze
the survey results separately by gender, it is
reasonable to assume that women with COPD are
disproportionately impacted by the cost of health
care. Women in general have lower incomes and
have higher out-of-pocket medical expenses than
men, making them more likely to struggle to
afford the care they need.40
Knowledge, Attitudes and the Role of Stigma
Once women with COPD get a proper
diagnosis, there is little evidence to suggest that
they are treated differently than men by the
clinicians who care for them. However, surveys
have found that between 25 and 50 percent
of primary care physicians are unaware of the
professional guidelines for the diagnosis and
treatment of COPD. Even clinicians who claim to
be familiar with the guidelines do not necessarily
follow them, and there are distressingly frequent
reports of treatment practices that are not
considered optimal care, including inappropriate
use of systemic steroids, underuse of pulmonary
rehabilitation, infrequent immunization and the
incorrect belief that current smokers cannot
benefit from treatment.41,42
Patients with COPD, both men and women,
have also been shown to have low levels of
knowledge about their condition. A large survey
conducted in 2006 found that the COPD patients
were far less knowledgeable about measures
of their lung capacity and breathing ability than
they were about their cholesterol numbers and
blood pressure, despite similar amounts of clinical
testing. Lack of patient knowledge about COPD
contributes to problems managing treatment,
which may in turn reduce feelings of control,
increase anxiety and reduce quality of life.41,43
1-800-LUNGUSA
Men and women have
different ways of getting
information about their disease
and different ways of coping.
Investigations looking at
gender-related differences
are clearly needed.
– MeiLan Han, M.D.
Patients are highly sensitive to the stigma
associated with a smoking-related illness like
COPD. One study found that more than 40
percent of both women and men thought their
doctors judged their COPD to be self-inflicted.36
Another small study of women with COPD found
that respondents believed their physicians were
biased against them as female smokers.44 This
perception of stigmatization, whether accurate
or not, can result in a patient’s reluctance to
seek care.45 Doctors with a negative attitude or
unrealistic pessimism about the prognosis for
their COPD patients have been shown to be less
likely to treat or refer adequately.43
Patients’ perceptions about illness can also
have a strong impact on the effectiveness of
treatment and health outcomes. Although there
is no evidence of gender differences in patient
knowledge about COPD, men and women do
differ in their perceptions. Despite similar access
to the healthcare system, women are more
likely than men to feel that they have difficulty
reaching their physician, and that the amount of
time their doctor spends with them is insufficient.
They are also more likely than men to say that
they get information about COPD from sources
other than their doctor. This may be due in part
to a well-recognized communication gap between
male physicians and their female patients. But
it also likely reflects a coping style that is more
dependent on interpersonal interaction.46
13
Treatment Differences
Smoking cessation
Smoking cessation is the single most
important disease management strategy
available to patients with COPD who are still
smoking. Quitting smoking has more of a
positive impact on health status and disease
progression than any other type of treatment.5
For women with COPD, the benefits are
particularly high. One large, five-year study of
smokers with COPD looked at the change in
breathing ability over time in a group of men and
women who quit smoking compared to a group
who did not. In the first year, everyone who
quit smoking showed significant improvement
in their breathing ability, but the benefit in the
women was more than twice as great as that
in men. Over the course of the study, the lung
function of all the participants gradually declined,
as is to be expected with COPD. When looking
at the five-year results for the study, men who
stopped smoking had an endpoint lung function
that was not different from their starting one.
However, women who stopped smoking still saw
significantly improved lung function at the end of
the study.47
Considering the fact that stopping smoking
has such clear and immediate benefits, it is
surprising how little is known about the particular
issues that women with COPD face when trying
to quit. When looking at the population as a
whole, women who smoke make quit attempts
about as often as men, and they are more likely
to seek counseling and medication to support
their efforts.48 Unfortunately, they have less
success quitting than men, whether or not they
use cessation medications. The reasons for this
remain unclear, but may be related to the fact
that female smokers are more psychologically
and emotionally dependent on tobacco, and
more vulnerable to depression during quitting.49
Smokers who are depressed are known to be
more likely to relapse after a cessation attempt.
Experts recommend that cessation services for
women be tailored to their specific needs and
concerns, including social support.50
14
Pulmonary rehabilitation
Pulmonary rehabilitation is a physiciansupervised treatment program that combines
exercise training, self-management education,
counseling and social support to maximize a
patient’s functional ability and quality of life.
In a series of sessions over a six- to 12-week
period, participants work with nurses, respiratory
therapists and health educators on specific
activities tailored to individual conditions and
needs. This approach has been proven effective
to reduce shortness of breath, improve strength
and ability to perform daily tasks and cut healthcare costs.51 Experts widely agree that pulmonary
rehabilitation should be a core component of the
management plan for all patients with COPD.5
Several studies have found that women
experience greater improvements in shortness
of breath after a standard-length program.52–54
This is noteworthy because, in general, women
with COPD report more problems with shortness
of breath impacting their daily functioning and
quality of life. There is some evidence that women
do not retain their physical improvements as well
as men, perhaps because they are less likely to
keep up a rigorous exercise regimen. They do,
however, get considerable benefit from the social
support aspects of the program.52,55
Exercise not only lets me live,
it enables me to have a life.
– Jean Rommes
In spite of its proven effectiveness,
pulmonary rehabilitation is greatly underutilized.
It is estimated that only 2 percent of the COPD
population has access to an existing program.51
A shortage of trained providers, lack of knowledge
about the program and low level demand from
primary care physicians are all factors that need
to be addressed. Little is known about whether
or not women are less likely to be referred to
pulmonary rehabilitation than men. But in cases
where insurance coverage and ability to pay
are a limiting factor, women are presumably
at a disadvantage. Fortunately for older COPD
patients, Medicare adopted new rules covering
pulmonary rehabilitation services in 2010.
Self-Management and Quality of Life
Self-management of COPD is complex and
often includes making major lifestyle changes
and keeping track of numerous medications.
Unfortunately, many people living with COPD
don’t seem to self-manage their disease very
well. A survey of COPD patients in Australia
found that lack of adherence to prescribed
treatments was higher than what is typically
found with other conditions. The reasons
appeared to be a combination of unintentional
responses—“I get confused about my
medication”—and intentional responses—“I vary
my recommended management based on how I
am feeling.”56
1-800-LUNGUSA
Perception of disease-related stigma can
lead to reluctance to use beneficial treatments
that “mark” patients with the disease in the
public eye. This is a problem for people living
with COPD, particularly for those patients with
advanced disease who need to use supplemental
oxygen. Studies show that a range of only 40–70
percent of patients who have been prescribed
oxygen use it as directed.59
There is not much information available
about differences in how men and women with
COPD self-manage their disease and stick with
prescribed therapies. One study of COPD patients
in the hospital emergency department found
that, compared to men, women had taken fewer
self-management steps in the early stages of
their symptom flareup, used less medication
and waited longer before seeking emergency
care.57 This is of concern because delay in
seeking treatment for a COPD flareup has been
linked with slower recovery, increased risk of
hospitalization and overall lower quality of life.58
When I landed in the hospital with
respiratory failure, my prognosis did
not look good. My doctor laid all the
cards on the table and told me exactly
what I need to do if I wanted to live
and live with any quality of life.
I was filled with fear—it is really scary
when you can’t breathe. I wanted to
live. My husband needed me.
I had a lot to learn, but I was actually
motivated by the challenge.
– Jean Rommes
15
Quality of Life
Health-related quality of life is a wellaccepted measurement that is used to assess the
impact of disease on patients’ daily lives, activity
and well-being. Instruments that measure
quality of life include questions about symptoms,
mobility, social interaction and emotional
behaviors.60 Quality of life is an important
measurable outcome in patients with COPD,
and has been shown to be a good predictor of
mortality, hospitalization, healthcare utilization
and response to treatment.61
The quality of life for women with COPD
is impacted earlier in life, and is worse overall
than that of men with similar severity of
disease.61,62 This is due, at least in part, to a
strong relationship between shortness of breath
and quality of life, and the fact that women
experience more problems with shortness of
breath. It is important to note that the concept
of shortness of breath is not the same thing
as measurable lung function. It is a subjective
experience of breathing discomfort, which for
people with COPD is affected by degree of airway
obstruction, levels of oxygen in the bloodstream,
strength of the muscles that are needed for
breathing as well as psychological factors.63
In addition to shortness of breath, women’s
quality of life is mostly affected by impairment of
their social and emotional well-being.61,64 Anxiety
and depression are two of the most common
co-occurring conditions in COPD patients, and
have a major impact on quality of life.60,65 A
comparative study of the rates of anxiety and
depression in people with and without COPD
found that compared to the control group, the
COPD patients were 3.1 times more likely to
suffer from anxiety and 6.8 times more likely
to suffer from depression. The women with
COPD had the highest levels of both anxiety and
depression.66
Women with COPD are clearly at risk of being
caught in a downward spiral. Poor quality of life
and increased anxiety and depression contribute
to a lack of adherence to treatment regimens,56
more frequent emergency visits and significantly
more relapses. Frequent symptom flare-ups
in turn further decrease quality of life and
worsen the severity of disease.67 Unfortunately,
the psychosocial aspects of COPD are not well
recognized or addressed in primary care settings
where most COPD patients are diagnosed and
treated. Studies have found that less than
one-third of COPD patients with depression and
anxiety were receiving appropriate treatment,
and many primary care physicians express
surprise that depression is a common problem
for patients with COPD.65
In the last six months of her life, everything became such an effort.
She got depressed because she was not able to do anything and had
lost her independence. She told me knowingly, “I’m on a slippery
slope and don’t want to continue like this.”
– Lynn S., daughter of Marilyn K.
16
Not-So-Benign Neglect
Considering COPD has recently moved from
the fourth to the third leading cause of death in
the U.S., it is troubling that the disease is still
largely overlooked or omitted from the public
health system’s planning and programs. There
appears to be little or no focus on COPD at the
Centers for Disease Control and Prevention (CDC),
the nation’s leading public health agency. It is
not included on the list of 17 different programs
run by the National Center for Chronic Disease
Prevention and Health Promotion (NCCDPHP). The
Preventive Health and Health Services Block Grant
Program does not include COPD among chronic
diseases it addresses. In fact, a frequently-askedquestions document about the CDC’s Coordinated
Chronic Disease Prevention and Health Promotion
Program omits mention of the disease completely:
“The focus of the program is on the top five
leading chronic disease causes of death and
disability (e.g., heart disease, cancer, stroke,
diabetes and arthritis) …”68
1-800-LUNGUSA
In an attempt to encourage a greater federal
response to the disease, the United States
Senate, in its Fiscal Year 2012 report, tasked
the National Heart, Lung and Blood Institute
(NHLBI), in conjunction with the CDC, to develop
a national COPD action plan. This comes after
the publication of a document by the CDC in
2011 titled Public Health Strategic Framework
for COPD Prevention, which did not result in any
meaningful action. The NHLBI is expected to
move forward with an action plan in 2013, which
advocacy organizations and patient groups are
hopeful will at last give the nation a coherent,
impactful and funded effort to address the
public health role in prevention, treatment and
management of this disease.
17
Recent Successes
There has been a long-standing paucity of
nationwide data collected about COPD compared
to other serious diseases. In 2011, for the first
time, a state-level COPD prevalence question
was added to the annual Behavioral Risk Factor
Surveillance System (BRFSS), co-sponsored by
the CDC and NHLBI. It asked a sample of adults in
all 50 states, the District of Columbia and Puerto
Rico if they had ever been told by a physician or
other health professional that they have COPD.
In addition, state health departments were
encouraged to add an optional set of questions to
ask people who answered yes to the first question
for more information about their symptoms,
medications, use of health care and quality of life.
Twenty-one states, DC and Puerto Rico all elected
to include the optional module.
Increasing public awareness of COPD is a
critical step in getting people with the disease
diagnosed and into proper treatment. It is
especially important that women who are at
risk, and their healthcare providers, get the
message that COPD is not just a man’s disease.
The situation is similar to that in 2002, when the
NHLBI responded to concerns of experts in heart
disease and women’s health to launch the Heart
Truth campaign. At that time, only 34 percent
of women knew that heart disease was their
leading cause of death. NHLBI and its network
of partner organizations determined to develop
the campaign with the goal of creating a strong
brand that would have a powerful emotional
appeal to women of all ages and ethnicities: the
now-famous Red Dress. The campaign took off,
becoming a catalyst for a wide range of activities
at the national and local level, and driving
awareness levels up to 69 percent by 2009. More
importantly, women who had been exposed to
the campaign were more likely to take action to
protect themselves from risk and to talk to their
doctors about heart disease.69
In years to come, as the BRFSS results
accumulate, policymakers and public health
advocates will be better able to track and analyze
trends in prevalence and overall burden of disease
at the national, state and local level. Being able to
answer questions like “Which subgroups of people
have the highest rates of COPD?” and “Why do
COPD patients in my state use more healthcare
resources than average?” will be invaluable in
formulating policy change and targeting education
efforts to help the people who need it most,
including women. For this to happen, though, it is
imperative that the CDC and all 50 states continue
to support the BRFSS, and that the optional
module is universally adopted.
In 2007, NHLBI took on the similar need to
raise awareness about COPD by launching the
Learn More, Breathe Better® campaign. When the
campaign started, baseline surveys showed that
only 49 percent of adults had heard of COPD.
Although Learn More, Breathe Better does not
yet have the strong brand recognition of the Red
Dress, it has built a strong national network of
partners that supports the campaign through
a range of promotional activities. Since then,
annual surveys showed incremental success in
increasing awareness, up to 71 percent of adults
in 2011. Long-term success will require longterm investment in the campaign, as well as
tailoring of key messages for high-risk audiences.
Fortunately, there are pockets of activity in
the public and private sectors where progress is
being made to address the staggering needs of
women at risk of or living with COPD.
Using Data for Public Health Planning
18
Raising Awareness
Engaging Women in Leadership
The Women in Government (WIG) Foundation
is a national nonprofit, nonpartisan organization
of women state legislators that provides
leadership opportunities, networking expert
forums and education resources to address
the complex public policy issues confronting
their members. Since its founding in 1988, the
organization has had women’s health as one of
its priority areas of focus. For the last several
years, WIG has been working in partnership with
the COPD Foundation to educate their members
about the burden of COPD in their communities
and the role that state legislators can play
in making a difference. They have hosted
joint educational sessions at WIG’s regional
conferences and annual Healthcare Summit,
1-800-LUNGUSA
conducted COPD screening events for members
and developed a COPD Toolkit for action, among
other activities.
Through conference programming, this
partnership has reached more than 210 women
state legislators representing 30 states. At the
Third Annual Healthcare Summit, 45 veteran
legislators from 25 different states recorded
PSAs, and in January 2013, 23 newly elected
women state legislators recorded PSAs, all of
which will air throughout 2013. Together, the two
organizations plan on expanding collaboration
to co-host a series of briefings, screenings and
awareness events at state capitals, raising
COPD’s priority level in state legislatures across
the country.
19
Finding a Better Way to Provide Care
In recent years, researchers and healthcare
systems have been experimenting with a patientcentered approach to care that is promising to
yield better health outcomes than the standard
physician-centered approach. Patient access
is improved, disease self-management is
emphasized and hospitals and physicians operate
in integrated systems that improve collaboration.
The results are demonstrating better knowledge
of patients and their needs, improved quality and
greater efficiencies in the delivery of care.
At the Mayo Clinic, clinicians are having some
success combining conventional medicine with
complementary and alternative medicine, using
self-empowerment and mindfulness training.
This approach was designed by Roberto Benzo,
M.D., a pulmonologist and epidemiologist with an
interest in behavioral medicine. The result is that
the patients in his care report that they feel better
physically and emotionally. Data analysis suggests
that hospital admissions could be reduced by 20
percent, a huge impact for individual patients and
on overall healthcare costs.
An innovative program at Temple University
Health Systems Lung Center is the COPD-PILOT
(Personalized Daily Exacerbation Management
Tool). This clinically validated monitoring system
using smartphone technology allows patients
to log in daily to report their symptoms. Each
patient is assigned a score and a member of the
clinical management team follows up with the
patient with appropriate recommendations and
encouragement. A recent review demonstrates
a 30 percent reduction in acute exacerbations
versus standard of care, with a 90 percent
compliance rate for patients monitored daily.
Better Breathers Club
For more than 40 years, the American Lung
Association has offered Better Breathers Clubs to
patients and their caregivers who are living with
chronic lung disease. Better Breathers Clubs meet
regularly and are led by trained facilitators. Patients
and their loved ones learn ways to live better with
COPD while getting support from others who share
many of the same struggles. These support groups
give patients tools they need to live with the best quality of life possible.
For people living with COPD who feel alone and isolated, these support groups do help.
Through educational programs, skills building and talking with others who understand,
patients report that not only do they benefit emotionally, but it also has a positive impact on
their health.
Questions About COPD?
The Lung HelpLine is a toll-free resource for patients and their caregivers to speak with a
registered nurse, respiratory therapist or quit smoking specialist about COPD.
Call 1-800-LUNGUSA (1-800-586-4872) from 8 am–12 midnight, Eastern time.
20
1-800-LUNGUSA
My mother would often say to me, “You don’t know what it is like
to not be able to breathe. You don’t know how hard it is,” and I was
sad because I just wanted to know what I could do for her.
– Lynn S., daughter of Marilyn K.
Taking Action
There are a number of positive steps that
can and should be taken to make a difference
in the health and well-being of the millions
of women at risk from COPD in the United
States. The American Lung Association calls
upon government agencies, the research and
funding communities, insurers, health systems,
employers, clinicians, women and their families
to take action now. Most importantly, the
leadership in public health and health care at
the national, state and local level must embrace
a sense of urgency and a can-do attitude about
COPD. This will benefit both women and men
living with COPD, as well as their loved ones and
their communities, all of which are suffering from
this terrible disease.
¾ The Centers for Disease Control and
Prevention must recognize the fact that COPD
is a leading cause of death and disability
in the U.S., and create and support a
comprehensive COPD program commensurate
with the magnitude of the burden this disease
has on public health.
¾ All 50 states, the District of Columbia and
Puerto Rico should adopt and retain the
optional COPD question module as part of the
annual Behavioral Risk Factor Surveillance
System.
¾ State and local governments should enact
and enforce laws that protect the public from
exposure to secondhand smoke.
¾ The COPD research community, including
public and private funders, should ensure
adequate participation of women in clinical
trials, as well as analysis and reporting of sexstratified data.
¾ All healthcare systems, including public and
private payers, purchasers and providers,
should implement and be accountable for
patient-centered practices that address
access, operational excellence and quality of
care for COPD.
¾ Employers should include COPD prevention
and management in their workplace wellness
initiatives, including smoking cessation,
accurate diagnosis, reduction of occupational
exposures and guideline-based management
as key interventions.
¾ Agencies and organizations that provide
community-based smoking cessation
programs should ensure that the counseling,
medications and follow-up they provide are
effective at meeting the particular needs of
women.
¾ Healthcare providers should adopt policies
and practices that improve diagnosis and
treatment of COPD in women, including
spirometry, screening and referral for
depression, and linkage with community
programs for social support.
¾ Women’s health advocates should recognize
and address the importance of COPD as a
priority issue for their constituency.
¾ Women living with COPD should take steps
to learn all they can about their disease and
how it affects them; to advocate for their own
best care, including the disease management
services and social support that they deserve;
and to become a voice for themselves and
other women with COPD in their community.
21
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1-800-LUNGUSA
Acknowledgments
“Taking Her Breath Away: The Rise of COPD in
Women” is the sixth report in the American Lung
Association’s Disparities in Lung Health Series that
takes an in-depth look at the needs of populations that
bear an unequal burden of risk and disease.
These reports build on the American Lung
Association’s long-standing commitment to saving lives
and improving lung health and preventing lung disease
for all Americans. For a compendium of information
about lung disease in various racial and ethnic
populations, see the “State of Lung Disease in Diverse
Communities: 2010,” available at www.Lung.org.
As with all Lung Association reports, “Taking Her
Breath Away: The Rise of COPD in Women” was a
collaborative undertaking, and we gratefully acknowledge
the many contributors who made it possible:
In the American Lung Association National Office:
Katherine Pruitt, who directed the project and was
a major author; Mingyang Shan, who led the literature
review and analysis of statistical data and was a major
author; Elizabeth Lancet, who supervised the project,
was a major author and reviewer of the report; Zach
Jump, who analyzed data, chose relevant data for
charts and reviewed the report; Janine Chambers, who
assisted in the literature review, conducted interviews
and reviewed the report; Laetitia N’Dri, who assisted
in the literature review and finding case studies; Susan
Rappaport, Paul G. Billings, Norman H. Edelman, MD and
Erika Sward who reviewed the report; Jean Haldorsen,
who supervised production and creative work; and Mary
Havell McGinty, Mike Townsend and Gregg Tubbs who
managed internal communications and media outreach
for the report.
The American Lung Association especially thanks
the following people who generously shared their
expertise and experiences, and without whom this
report would not have been possible:
Jenny Bard, American Lung Association of California
Gerard Criner, MD, FACP, FACCP - Chair, Department
of Medicine; Co-Director, Center for Inflammation,
Translational and Clinical Lung Research Temple
University School of Medicine; Director, Pulmonary
and Critical Care Medicine, Temple University Hospital;
Director, Temple Lung Center
Dawn DeMeo, MD, MPH - Assistant Professor
Harvard Medical School; Pulmonary and Critical Care
Medicine Brigham and Women’s Hospital
Chris Garvey, FNP, MSNMPA, FAACVPR - Manager,
Seton Medical Center Pulmonary and Cardiac
Rehabilitation
MeiLan Han MD - Associate Professor, Department
of Internal Medicine; Medical Director, Women’s
Respiratory Health Program; Pulmonary and Critical
Care Medicine; University of Michigan Health System
Jill Heins –American Lung Association of the Upper
Midwest
Grace Anne Dorney Koppel – Attorney;
Spokesperson for the Learn More Breathe Better
Campaign of the National Heart, Lung and Blood
Institute of the the National Institutes of Health;
Member of the Board of Directors, COPD Foundation
Mary Alba Kurth – American Lung Association of the
Southwest
Kate Lorig, RN, DrPH – Professor, Department of
Medicine; Director, Patient Education Research Center;
Stanford School of Medicine Stanford University
Jill Ohar, MD – Professor of Internal Medicine;
Director of Clinical Operations: Section of Pulmonary,
Critical Care, Allergy and Immunological Diseases; Wake
Forest University School of Medicine;Wake Forest Baptist
Medical Center
Jean Rommes – COPD Patient Advocate, Volunteer,
American Lung Association; Volunteer, EFFORTS
Cheryl Sasse RRT – American Lung Association of
the Upper Midwest
Lynn Sutton – daughter of the late Marilyn Keane
American Lung Association National Offices
Corporate Office
55 W. Wacker Drive, Suite 1150
Chicago, IL 60601
Phone: 312-801-7630
Advocacy Office
1301 Pennsylvania Ave., NW, Suite 800
Washington, DC 20004-1725
Phone: 202-785-3355
Our Mission: To save lives by improving lung health and preventing lung disease.
www.Lung.org • 1-800-LUNGUSA
Copyright ©2013 by the American Lung Association. American Lung Association® and Fighting for Air® are registered trademarks.
Designed by Barbieri & Green, Inc., Takoma Park, MD • Printed by Hard Copy Printing, New York, NY
Page 5 illustration used with permission of Krames ©2013
Reissue, printing and distribution of this 2013 report sponsored
by Sunovion Pharmaceuticals Inc.
is a registered trademark of Dainippon Sumitomo Pharma Co., Ltd. Sunovion
Pharmaceuticals Inc. is a U.S. subsidiary of Dainippon Sumitomo Pharma Co., Ltd.
About the American Lung Association
Now in its second century, the American Lung Association is the leading organization working to save
lives by improving lung health and preventing lung disease. With your generous support, the American
Lung Association is “Fighting for Air” through research, education and advocacy. For more information
about the American Lung Association, a holder of the Better Business Bureau Wise Giving Guide Seal,
or to support the work it does, call 1-800-LUNGUSA (1-800-586-4872) or visit www.Lung.org.
June 2013

Taking Her Breath Away - American Lung Association

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