The Face of Disease

It takes a gutsy person to sign up for a plenary session with that title. From the moment she took the podium, Grace Anne Dorney Koppel captivated a small audience with her moving story of her struggle with chronic obstructive pulmonary disease (COPD) and its many co-morbidities. With steely resolve, she challenged the physicians in the audience to step up their efforts to diagnose and treat a disease that currently affects more than 24 million Americans.

Koppel, the wife of former Nightline host Ted Koppel, was an engaging and authoritative presence at the podium. At times during her talk, I had the urge to run to all the other sessions going on this morning, round up physicians Pied Piper-style, and lead them into this session. But I resisted the urge, not willing to miss any of Koppel’s talk myself.

Though she quit smoking 13 years ago, she began to feel severe shortness of breath on short walks and climbing stairs. “Before August 2001,” Koppel said, “I thought I was in perfect health. I knew my insulin number, my HDL, and my LDL. Then I found I could not walk. I had a full exam with every test imaginable, except for spirometry. By 2020, COPD will be the third leading cause of death in the United States. We must reverse this catastrophe. Heart disease, lung disease, and stroke—all have seen their incidence decline in recent years. But the incidence of COPD continues to rise.”

Early in her talk, Koppel noted with palpable frustration that, “There is no famous person who would admit that he or she had COPD. No one famous has stepped forward as a patient advocate. You’ll have to settle for me.” The reason, she says, is the stigma, the blame, and the shame of COPD. “I need your help to dispel the image problem that comes with my disease.” Because 5 in 6 COPD sufferers have a history of smoking, she said, they suffer from not only the debilitating symptoms of the disease and its comorbidities, but also from the perception that they somehow “deserve” their illness.

Describing the COPD community, Koppel said, “I am a voice trying to reach the 12 million untreated COPD patients who suffer in silence, and the 24 million Americans who have the disease who are not with us today, including those with COPD so severe that they have withdrawn from social interaction.”

An aggressive treatment plan initiated in 2001 when she was finally correctly diagnosed, Koppel began a pulmonary rehabilitation program, and made major lifestyle changes that included regular aerobic exercise, work with weights, and yoga. Today, she hardly looks the part of “the face of disease.” But there have been setbacks, pain, and co-morbidities all along the way. In 2005, she was diagnosed with lung cancer, and part of her lung was removed. “Each time there’s a setback, I try to get back to the level I was at before the surgery or exacerbation and beyond, setting higher goals.”

Beyond her own moving story, heartbreakingly told, Koppel challenged the physicians in the audience to help COPD patients by encouraging them to quit smoking and investing in diagnostic tools—particularly spirometry—that are sorely lacking in most family practices. “I am ill,” Koppel said. “I have COPD. I’m also in good health, since I’ve learned to manage and cope with my disease. I know when to call my doctor and how to use every tool at my disposal to maintain my health.”

“Before spirometry, doctors often misdiagnosed COPD patients as asthma patients,” Koppel said. “Today, we know COPD is a systemic and preventable disease, and that other comorbiditids must be considered when evaluating patients.”

Among her many messages to physicians, Koppel urged them to freely prescribe the pharmaceutical products that now make smoking cessation far more successful today than in years past. Most of all, though, she asked that family physicians use spirometry to diagnose patients. “I get mad that so few of you use spirometry to diagnose patients,” she said. “I cannot accept that once you understand that COPD can be diagnosed, treated, and partially reversed, that you will not do your part. If you won’t do office spirometry, refer your patients to someone who will.

“We need you step up and do your part. Without you, the 12 million undiagnosed and untreated COPD patients will never be found.”