was diagnosed with chronic obstructive pulmonary disease
(COPD) in 2005. During the following years, he
self-navigated many aspects of living with COPD and found
himself fully engaged in activities raising disease
awareness. In addition to his volunteer work as a
COPD Foundation Wisconsin State Captain, he currently
serves on the U.S.
COPD Coalition Board of Directors, the COPD PPRN
(Patient Powered Research Network) Governing Board and
the Executive Board of Trustees for EFFORTS, an
international patient-based, patient-driven coalition for
those with respiratory diseases. He also assists with
COPD research efforts at Johns Hopkins University and the
University of Illinois Chicago along with serving on the
Department of Defense scientific peer review panel for
respiratory health research. He is on the National
Institute for Occupational Safety and Health-National
Occupation Research Agenda's (NIOSH-NORA) council for
research and recommendations for occupational safety and
health. He lives in rural
Viroqua, Wisconsin, and is a member of the local
health system's Patient and Family Advisory Council.
How did you find the COPD Foundation and decide
to become a State Captain?
At the time of my COPD diagnosis, I was surprised and
disappointed that so little information was
available for patients and families. But I said to
myself, I have to figure this out. And I did. After
spending a career as a district and regional manager in
retail and then making a transition to a successful
marketing career, I think I was somewhat of “a
natural” with networking, connecting, and
collaborating with others interested in COPD. At one of
the many early meetings I attended after my diagnosis, I
met John Walsh, the COPD Foundation's co-founder and an
absolutely amazing man. He got me enthused about the
Foundation, patient research participation, and several
other things. Next thing I knew, I was on the Hill as a
Foundation State Captain, giving my pitch to the offices
of my Congressional representatives and Senators in
Washington about COPD. State Captains have a really
important role in making a difference for this disease.
One of John's [Walsh] dreams was to have a State Captain
in each congressional district, 435 in total. We're not
What are the COPD Foundation's State
…think of us as a group of individuals who, as a
group, have a passion around every aspect of
First of all, know that we're grassroots volunteers. But
also think of us as a group of individuals who, as a
group, have a passion around every aspect of this
disease. We're located in all states and one of our main
objectives is to spread awareness about COPD. We believe
in the importance of promoting facts about this disease
and the disease's impact on family and caregivers. Many
of us want to be part of health policy discussions in
order that COPD gets the recognition it needs as the
killer of Americans this disease is.
Though some of us are patients, others are caregivers and
family members. We also have several Registered
Respiratory Therapists and professionals from other
healthcare backgrounds. It's important to understand that
State Captains come from a variety of backgrounds. Why?
Because COPD is a disease that is much more than just the
patient's experience. COPD is a family experience, it is
a caregiver's experience, it's a respiratory therapist's
experience. So mainly we are from those backgrounds. But
all of us are involved in some way or another to help
bring attention to this disease.
Are there important differences between the
functions of State Captains located in rural areas versus
those who live in urban areas?
A State Captain in an urban area may be perfectly suited
to meet a rural area's need and vice versa, so you can
consider us as potential partners with skill sets that
can cross zip code designations. State Captains
do different things, have different interests, and come
from different backgrounds. You can find our contact
information on the
State Captains website. Search by state and then
study our bios to match our skills and interests with any
need you might have. The COPD Foundation team can also
connect you to Captains that match your interests.
For example, a Captain who lives in an urban area with an
education skill set might be able to accept an invitation
to set up a COPD information table at a rural health fair
or at a meeting in a rural setting. Another State Captain
might be the key individual to engage if a letter-writing
or an email campaign is needed to engage policymakers in
the rural issues around COPD. You might find another
Captain does public speaking about COPD for a variety of
audiences, including rural. Other Captains are frequent
participants with COPD360Social, the Foundation's online
I'm another example. My particular expertise as a Captain
doesn't as much link to my rural address as it does to
having COPD for some years now. Over time, I've become
more and more vested in ensuring that COPD research is
patient-centric. I've been very active in this space and
now I'm a co-investigator for patient-centered research.
These activities have also given me the opportunity to
serve as a patient member of several expert panels for a
number of health-related organizations and academic
institutions as well as on several COPD-focused boards.
I think another important function of my job as a State
Captain is making sure I take advantage of any
opportunity offered to join those who are meeting with
individuals in charge of funding research or who have
policymaking roles. I find that a key for engaging these
audiences is to speak slowly and to use the startling
statistics that describe COPD. I tell them,
“COPD is the 4th leading cause of
death. It is 155th on the funding list. Don't
you care?” I find those short phrases usually
get attention and people start taking notes while
listening to our talking points.
In May 2017, the National Heart, Lung, and Blood
Institute (NHLBI), in official partnership with the CDC,
released theCOPD National Action
Plan. How can State Captains help
implement this plan in rural areas?
I participated as a patient stakeholder during the CNAP
planning meetings. The plan identified 5 stakeholder
groups and established 5 goals. State Captains are all in
at least one of the stakeholder groups and they can
definitely be partners with those trying to implement the
plan's goals in rural areas. Many State Captains might
even fit into several stakeholder groups.
For example, I'm obviously not a health professional or a
policymaker, but as a patient, a State Captain, and as
someone very interested in research, I see myself as a
member of the other three stakeholder groups: the
patient, family, and caregiver group, as well as advocate
and research groups.
Now that I've talked about the variety possible in
Captains' stakeholder groups, I can give you my opinion
of where I think our activities match with the goals.
State Captains are likely able to provide assistance with
implementing the first goal since it's aligned with what
State Captains do: promoting awareness about the
prevalence and impact of COPD. For goals 3 and 4, again,
we can share research-based factual information and be
part of teams that encourage more research.
Regarding research activities, just as John Walsh
encouraged me, I also encourage others that have COPD to
participate in the
Patient-Powered Research Network, known as COPD PPRN,
a network that is definitely important for rural
COPD patients to consider. For goal 5, since it relates
to public healthcare actions, I think that goal is
another Captains could assist with.
You have COPD. After many years in an urban
setting, you now live in a rural area. What stands out as
the main difference?
Access to care. The main difference is access. When I see
a pulmonologist, I make a nearly 85-mile round trip. My
COPD has been stable and my primary care doctor takes
great care of me, so fortunately, I don't need to see a
pulmonologist except once a year. But it's still a long
way to go.
And I think my experience is something to highlight
because so often the quality of rural care goes
unrecognized and underestimated.
But I want to share something else that I've learned due
to a very recent need to access acute care for my health.
Because my primary care doctor knows me so well and
because we have a nearby Critical Access Hospital, when I
became ill, I was able to be cared for locally. It was
the first time I was ever in the hospital for my
respiratory condition. My stay was short, but I realized
I got great patient-centered care right here in my own
community. My primary care doctor was great. My nurses
were great. I do wonder if I would have gotten that same
level of personalized care in a larger facility. Because
that's what every patient should get. Personalized,
patient-centered care. That's really important to me. And
I think my experience is something to highlight because
so often the quality of rural care goes unrecognized and
Another access issue is related to peer groups. In rural
areas, those geographic distances don't always allow for
groups like the American Lung Association's
Better Breathers Club that includes a group
facilitator. Yes, there are many COPD social media groups
on Facebook. A great group is
COPD360social, the online group sponsored and managed
by the COPD Foundation. But there's something about
sitting together face-to-face to share experiences with
others who have the same health condition you do that is
very important for me. It's hard to reproduce that
experience in rural areas.
As a current resident of rural America, what is
your great hope for your personal health future or others
To start, another one-word answer: technology. I have
great hope that the remote patient monitoring technology
that is being developed will help rural COPD patients
— or all COPD patients for that matter
— to better self-manage their disease. For
example, technology like a wearable vest sensitive enough
to detect changes in a patient's breathing capacity that
might trigger a treatment change to avoid a
hospitalization. Because there is new technology that
offers monitors on our inhaler medications to track our
compliance, I think about the potential these devices
have to remind us to not only take our medications on a
timely basis, but to notify us in advance when it is time
for a refill, especially for rural patients who depend on
a mailed supply. I even envision a pulse oximeter [a
device that measures oxygen saturation] with a remote
wireless connection to our oxygen delivery systems that
can sense our oxygen needs when those needs change due to
our activity level.
There are estimates of nearly 14 million people out there
in rural and urban America who have COPD that haven't
been diagnosed. We need to find them.
But I have another hope. I hope that in the future we'll
do a better job finding others with COPD. At a conference
in late 2017, I was on a panel addressing early
detection. There was talk about screening patients for
COPD during office visits. A physician audience member
stepped up and said there just wasn't time to do that
testing. I had to speak up. I told him you have time to
get me on the scale and weigh me. You have time to
measure my height. You have time to take my temperature.
At that time, I didn't have a heart history, so I said I
have no history of heart problems, yet you have time to
take my blood pressure. So maybe for people who have COPD
risk factors and a cough, maybe we should invest in the
low-cost equipment and take the time to screen lung
capacity. There are estimates of nearly 14 million people
out there in rural and urban America who have COPD that
haven't been diagnosed. We need to find them.
Opinions expressed are those of the interviewee
and do not necessarily reflect the views of the Rural
Health Information Hub.
With a perspective gained from many years as a physician practicing in rural and urban locations, Dr. Kay Miller Temple writes on a variety of rural health topics and programs for RHIhub's Rural Monitor and Models and Innovations. She has a master's degree in Journalism and Mass Communication. Full Biography