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Spotlight: Internet Throws Lifeline to COPD Patients
COPD-ALERT,
a 24/7 online support group, offers friendship and science.
Fran Howard
For many individuals with chronic obstructive pulmonary disease (COPD),
the Internet is their only connection to friendship and the outside world.
Many COPD patients barely have the energy to complete their daily tasks.
Parties, traveling, and everyday socializing often fall by the wayside as a
person’s disease progresses. The lung function of COPD patients can also be
affected by changes in the weather and exacerbated by air pollution, making
even leaving the house risky at times. And the fact that many COPD patients
are elderly further limits activity.
Add to that the guilt that patients who were smokers often feel and the
depression that can accompany loss of health, and it is easy to see how an
Internet support group can quickly become indispensable. Currently, there
are approximately six online support groups for COPD patients. One of those
groups, COPD-ALERT, is particularly popular with information seekers,
although friendship is an important offshoot of membership.
COPD-ALERT member Carolyn Hull of West Palm Beach,
Fla, was
diagnosed with emphysema in 1993. “There was virtually nothing on the
Internet then,” says Hull, but
she soon found companionship using the now defunct Prodigy Classic’s
medical support bulletin board for respiratory problems. Later, she found
online groups specific to COPD. Hull
has been a member of COPD-ALERT for a little more than 2 years and is also
a member of the Yoyo Sisterhood, a subgroup of five women from Vermont,
Alabama, Virginia,
and Florida, who met online
and have deepened their relationships through
COPD-ALERT.
“The COPD patient has found a lifeline in support groups,” says Hull.
“We learn from each other and we share ideas. We discuss how we feel and we
have fun.” Support groups help members stay abreast of medications, new
techniques, and medical breakthroughs. “The friendship means a lot to me,
too,” she says. “We don’t get out to socialize
like we would if we didn’t have oxygen and breathing problems.” Beside being a social venue, the group members also turn
to each other first when faced with a problem.
For instance, Hull recently
posted a question on the COPD-ALERT bulletin board, asking if anyone had
any advice on how she could convince her cat Angel to stop chewing on her
oxygen tubing. Someone suggested she put lemon on the tubing, so Hull
coated the tubing with lemon furniture polish and Angel hasn’t touched it
since.
Becoming Informed
While practical tips and emotional support account for much of what the
group has to offer, scientific information is also readily shared. In fact,
the group has a dozen or so members who are part of the scientific
community. Some are COPD patients themselves, while others work in the
field.
Joseph Barnard, PhD, a scientist in a pulmonary research laboratory at Baltimore’s
Johns Hopkins University School of Medicine, has been with the group almost
since its inception in July 2000. Barnard joined COPD-ALERT when he was the
senior scientist at Otsuka Maryland Research
Institute, in Rockville, Md, a privately held Japanese
pharmaceutical company. At the time, Barnard was assigned to do efficacy
studies on the company’s COPD compound.
With a background in acute, not chronic, lung problems, Barnard wanted
to see through the eyes of someone with the disease. “I wanted to know what
their life was like,” he says. After extensive discussions with Vlady
Rozenbaum, COPD-ALERT’s founder, Barnard signed
on. “We decided I could contribute while I was gaining something,” Barnard
recalls. “I never hid my purpose or my background. I didn’t want to come in
and use the group for my own purposes and then run away.”
Long after leaving Otsuka, Barnard is still a
member of the group, and he says the benefit of membership still runs both
ways: often members will recommend journal articles he has yet to see,
while he, in turn, provides another perspective on certain controversial
issues such as drug development.
“Sometimes a member will be angry about how expensive drugs are or why
some drugs have not been developed,” he says. “I give them information
about how the drug development process works.” He also spends part of his
daily log-in time providing understandable explanations for scientific
words or procedures and explains articles that he says can be “opaque” even
for those in the field.
Marilyn Lashin, of Delray
Beach, Fla,
a COPD patient who was put on oxygen 4 years ago, is another longtime
member of COPD-ALERT. She joined because she wanted a group that was
scientific in its orientation, one that would provide updates on the newest
drugs and research, in addition to offering emotional support.
“I’ve learned a great deal about oxygen use—I’m on oxygen 24/7,” she
says. By the time Lashin was put on oxygen, other
members had already surveyed various oxygen products and services and were
happy to share that information. “Different people in the group stay
current on different things,” she says. Lashin,
who has also belonged to other groups, finds that not only informed people
are attracted to COPD-ALERT, but members who may not be as knowledgeable
are continually learning more, almost by osmosis.
For example, Lashin recently posted information
that she learned while attending her local pulmonary rehab group on heating
and air conditioner filters that are approved by the American Lung
Association. The filters capture 90% of large allergens, like mold spores
and pet dander, from air passing through the filter, as well as much
smaller particles like dust, smoke, and smog.
Humble Beginnings
COPD-ALERT was started with slightly fewer than 100 members, most of whom defected from a group that was having “political”
problems, according to Rozenbaum, who is from Silver
Spring, Md. Today
COPD-ALERT boasts nearly 300 members. Membership is free, but those wishing
to join need to be approved before becoming part of the distribution list.
Once approved, they are free to receive and post messages.
“We are open to patients, caregivers, and medical professionals,” says
Rozenbaum. COPD-ALERT averages about 100 posts per day. For some people, it
is too much information to wade through, so they drop out. Members can
receive posts either by establishing a Yahoo account or by having the posts
e-mailed to them directly. Those who choose to belong via Yahoo read and
post messages and sort through archived messages, all while logged onto
Yahoo.
The same year he founded COPD-ALERT, Rozenbaum’s
health problems convinced him to retire from his long career with the US
Defense Department. Rozenbaum now spends 4 to 6 hours per day reading the
posts and making sure someone is available who can respond to them. “I do
research to answer a question myself,” he says, “or I contact someone else
who can respond to it.”
Born in the former Soviet Union, Rozenbaum is one of a small group of
COPD patients who never smoked (according to a nationwide survey released
in May 2004 by the National Women’s Health Resource Center, as many as 20%
of COPD sufferers have never smoked—ed).1 “I have always had
problems with my lungs,” he notes. When he was 11 months old, he was
hospitalized with acute respiratory problems and the doctors refused to treat
him. “My mother begged them to give me a transfusion,” he says. The doctors
finally agreed and he recovered within 2 weeks. In 1952, at the age of 12,
he had surgery for bronchiectasis.
Going to the Top
One character trait that makes Rozenbaum perfect in the role of
moderator is his quiet confidence. “I have made contact with some of the
top pulmonologists around the country and in
other countries by attending conferences and by contacting them directly,”
he says. “I am not afraid of contacting them. Occasionally, I send them a
letter with a comment or a question from a member.”
COPD-ALERT posts abstracts from medical journals on its Yahoo site and
puts out “Calls to Action” to its members via its public Web site,
www.copd-alert.com. “What makes COPD-ALERT different from other groups is
that it is nonpolitical and more involved in advocacy issues,” says
Rozenbaum. In 2002, Rozenbaum testified at the US Food and Drug
Administration for the approval of tiotropium
bromide, a drug specifically developed for COPD patients. Some members of
COPD-ALERT, including Rozenbaum and Lashin, began
using tiotropium bromide before it was approved
for use in the United States.
“We began to use [tiotropium bromide] as soon as
it became available in the Netherlands
in 2001,” says Rozenbaum. “One of our members is a Dutch pharmacist, who
has been distributing it to foreign customers since its approval in his
country.”
COPD-ALERT’s main mission is to empower
patients so they can have a truly beneficial relationship with their doctors.
“We encourage patients to ask questions, even suggest what kind of
questions they should ask, to get their medical data, and to share with
their doctors the newest medical information we obtain from medical
publications, research centers, and the pulmonary experts we consult,”
Rozenbaum notes.
The group’s activities revolve around four major goals: sharing
experiences and providing support; sharing knowledge about COPD and
associated diseases; patient empowerment or bridging the gap between
patients and medical professionals; and advocacy, everything from
letter-writing campaigns to speaking out about COPD and smoking cessation
in public forums to working with legislators and government officials to
effect change that will benefit COPD patients.
In its advocacy activities, COPD-ALERT works closely with the
Congressional COPD Caucus; the US COPD Coalition; the Alpha-1 Foundation;
the National Heart, Lung, and Blood Institute; the American Thoracic
Society; the National Emphysema/COPD Association; and the American
Association for Respiratory Care (AARC). In its everyday activities,
members work closely with one another to ensure that all members are
informed and empowered.
Fran Howard is a contributing writer for RT.
Reference
1. New national survey reveals striking lack of awareness of deadly
lung disease. Chronic obstructive pulmonary disease (COPD), the fourth
leading cause of death in the United States,
now claims more women’s lives than men’s. Available at: www.healthywomen.org/presskit/copd/pg1.html.
Accessed January 12, 2005.
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