A new patient-driven organization provides advocacy for people with chronic obstructive pulmonary disease.

 People with chronic obstructive pulmonary disease (COPD) often do not have enough energy after completing daily tasks to work to get their disease on the policymaking table. Their difficulty with movement due to decreased pulmonary function can be exacerbated by their need to carry oxygen, making traveling uncomfortable and costly.

This lack of energy and inability to enact change are two of the primary reasons behind the creation of the National Emphysema/COPD Association (NECA), a member-driven, patient-centered organization created in November 2001 and presided over by Barbara Rogers, who is also president of Respiratory Resources Inc, New York. NECA’s medical advisory council is composed of 24 members—12 physicians and 12 nonphysician clinicians, including RTs, nurses, and physical therapists. The 12 members of its board of directors are physicians, patients, family members, RTs, and a researcher. The organization’s mission: empower COPD patients and their families and caregivers to achieve a better quality of life.

NECA’s primary objective, besides promoting public awareness to improve prevention, early detection, and care, is to provide advocacy for people with COPD, a disease that has only recently made it onto the public radar screen.

COPD is actually two diseases, emphysema and chronic bronchitis. Cigarette smoking is the primary cause of both disorders. COPD is the only disease among the leading causes of death projected to increase over the next decade.

The disease is also a major public heath problem, according to James Kiley, MD, director of the Division of Lung Diseases at the National Institutes of Health’s National Heart, Lung, and Blood Institute. From 1980 to 2000, annual World Health Statistics show that death rates for COPD in women 35 years of age or older in the United States increased from 26.7 deaths per 100,000 people to 64.5 deaths per 100,000. The direction of the mortality curve needs to be reversed, says Kiley. The course to achieve that goal will be twofold. First, he says, new breakthroughs in treatment and prevention will be needed. And second, smoking rates need to decline, particularly through educating the nation’s youth about the tie between cigarette smoking and COPD.

Public Awareness
A core constituency in the pulmonary community advocates for more research dollars for COPD, Kiley says, and “it is a high priority for us,” but public awareness has been slow. Kiley compares the state of COPD awareness to asthma’s visibility two decades ago. Today, asthma is a household word. Most people know that asthma affects children and that the disease has various triggers.

But unlike asthma, Kiley says, many people believe that because COPD is self-inflicted, society and the health system do not owe these patients the care they need. “You don’t ignore a medical problem because the person was addicted to a substance,” he says. “I feel very strongly about that.”

Education and advocacy must be key elements in collective efforts to inform the public that COPD is a major health problem afflicting 16 million people in the United States. Patient advocacy, such as what NECA is doing with COPD and similar groups are doing with other respiratory diseases, is an effective way of gaining attention, Kiley adds. But in the case of COPD, it is often difficult for patients to advocate for themselves. “Some COPD patients have very compromised lung function,” Kiley notes. “Some have a hard time doing their daily chores and staying functional. To go out and march on Capitol Hill or advocate for more research is a struggle.” Moreover, many COPD patients are elderly, which further limits their energy.

According to the American Lung Association, nearly 120,000 Americans die each year from COPD. While cigarette smoking is the leading cause of the disease and smoking cessation the most important preventive step, more than 400,000 people worldwide die each year from exposure to biomass fuels—indoor air pollution caused by cooking and heating with biomass fuels in poorly ventilated buildings. Outdoor air pollution can exacerbate symptoms in people who already have the disease, Kiley says, but no direct link has been made to outdoor air pollution as a cause of COPD.

One of NECA’s initial thrusts is to promote public awareness to increase national funding for COPD research; programs to encourage early detection; prevention campaigns; and improved treatment and care. Another objective is to conduct, cosponsor, and participate in educational programs involving people with COPD and their caregivers, both professional and family.

First Town Meeting
The organization’s first national “COPD Town Meeting” will be held this month during Respiratory Care Week (October 20–26). The meeting is targeted at patients and their families. “The aim is to help educate those involved regarding what is available now and what is coming, to increase awareness and to mobilize to increase advocacy,” says Byron Thomashow, MD, NECA director and director of the Jo-Ann F. LeBuhn Center for Chest Disease & Respiratory Failure, New York. “Many of us believe that for far too long, COPD has been presented as a disease with little to offer, little hope, and no future. Those perceptions are wrong, are changing, and need to change.”

NECA’s first national town meeting will consist of formal sessions with presentations from experts and patients as well as more casual sessions. “We’ll be having informal break-out sessions on topics of interest to patients, such as traveling with oxygen,” says Rogers. Other roundtable discussions will focus on rehabilitation, the continuum of home care, transplants, and end-of-life care.

NECA officials are hoping to make the national town meeting an annual event held at the site of meetings of either the American College of Chest Physicians (ACCP) or the American Thoracic Society (ATS). “It is possible that some years we will decide to hold the meeting in Washington, DC, to help garner more national attention,” Thomashow notes. “The advantage of holding it at the site of one of our two national lung meetings, ATS or ACCP, is that most of the medical advisory council members are there.”

Bringing It Home
Because NECA’s meetings are aimed at patients who find it difficult to travel, NECA plans to take its meetings to COPD patients through a series of regional COPD Networks. NECA’s eight regional networks will host town meetings in Chicago, Phoenix, New York, Boston, and locations throughout Hawaii and Alaska. Rogers says the meetings will be informal and will differ according to the needs of each community and the available resources.

For example, says Hannah Hedrick, PhD, NECA vice president and director of Fern Forest Haven, Mountain View, Hawaii, an upcoming Phoenix meeting will consist of a free, 1-day patient/community seminar that will focus on three or four topics. A physician will give a mini-presentation for each topic. That presentation will be followed with a patient-led discussion.

Healthy activities, such as tai chi, stretching, and/or breathing exercises, will be taught at some of the meetings, says Hedrick. “We don’t talk about rehabilitation or exercise. We talk about healthy activities. In everything we do, we are committed to patient empowerment. We want to give patients simple tools that they can feel the benefits from almost immediately, and then let them incorporate those tools into their lives.”

NECA’s Town Meeting will be held in Orlando, Fla., on Sunday, October 26, from 11 am to 4 pm. The program is free, but registration is required. Call Brenda Buenaventura at (888) 825-7421, ext 242.

Fran Howard is a contributing writer for RT.