Medical Device Daily Washington Editor

WASHINGTON — While there is no shortage of emphasis on health and well-being in the U.S., public awareness doesn’t always flow along the trail to the greatest sources of mortality. Heart disease kills more women than breast or cervical cancer, for example, but the latter conditions get greater amounts of publicity.

As another example, speakers at the National Press Club here in the nation’s capital yesterday made the case that very few lay people — and few medical professionals — understand the severity of one of the deadliest diseases of modern times.

The press club meeting was held to roll out the “Learn More, Breathe Better” campaign to spread awareness of chronic obstructive pulmonary disorder (COPD), a combination of chronic bronchitis and emphysema described by participants as the fourth leading cause of death in the U.S. And they suggested it is one of the best-kept secrets of modern epidemiologists.

Elizabeth Nabel, MD, director of the National Heart, Lung, and Blood Institute (NHLBI) of the National Institutes of Health (NIH), told the audience that the “Learn More, Breathe Better” campaign is overdue, given that the disease is probably present in one of four persons over the age of 45.

“Many people with early signs of COPD simply avoid activities they used to enjoy because they become short of breath more easily,” Nabel said. The NHLBI chief noted that “diagnosis is easy, requiring only a simple breathing test in your doctor’s office.”

NHLBI has struck a partnership with professional societies and health advocates to launch the campaign, geared toward boosting awareness at the demographic groups at greatest risk. According to Nabel, doctors have diagnosed more than 12 million Americans with the condition, and as many as another 12 million may be struggling through long days and sleepless nights with this sometimes crippling state of affairs.

“Through this campaign, we hope to increase recognition of this disease so that those at greatest risk are diagnosed by getting a simple breathing test,” Nabel said

Grace Anne Dorney Koppel, wife of legendary newscaster Ted Koppel, is a patient and advocate, and said that she had the tobacco habit — which is blamed for much of the underlying disease.

“I did smoke for many years, but have not since 1995.” Koppel was diagnosed with COPD after she stopped smoking.

She said that those with COPD constitute “a vast legion of people,” making reference to the insidious nature of the disease, a characteristic of a number of diseases that makes diagnosis difficult.

Koppel remarked that COPD “creeps up on us until we wheeze, cough and gasp for air.” She added that because the condition makes breathing sensitive to posture, “[w]e try to sleep sitting up” in order to maintain respiration.

She said that COPD patients have a credibility problem, partly due to the anti-smoking crusade of the past decade or so. “Ours is the pariah of diseases because of the stigma of smoking,” Koppel said.

She pointed out that other diseases associated with conscious choices are not subjected to the same negative attention, Koppel argued, “and too few know the symptoms and what the outcome of treatment could be.”

Koppel said that when she consulted her primary care physician about her shortness of breath, he did not employ oximetry to check serum oxygen saturation or spirometric breathing tests, recommending only that she lose weight.

A month later, she went to the Mayo Clinic (Rochester, Minnesota), which diagnosed her with severe emphysema, and “it was anticipated that I would be on supplemental oxygen 24 hours a day.”

Koppel said that she improved rapidly, in part, due to “exercise, exercise, exercise.” She conveyed a very positive message to sufferers, but cautioned that “I don’t want to leave you with the impression that magic was wrought overnight or that my experience” represents the norm for those with the disease. She added though: “I feel better and stronger today than I did 15 years ago.”

Sonja Buist, MD, a professor of medicine at Oregon Health & Sciences University (Portland), said that “as lung specialists, it’s really remarkable that we’ve done such a poor job of informing the public and our colleagues” about COPD.

Part of the problem, she said, is that “over the past years . . . we’ve kept on changing the name” and have not pushed spirometry to test for it. Her numbers indicated that if current trends hold, it will become the third leading cause of death worldwide by 2020, which is “remarkable for a disease that nobody has ever heard of.”

Buist made the case that the total of almost 124,000 annual deaths is “a gross underestimate” because coroners often mistake the cause of death.

“What is so striking is the huge increase in the death rate of women” between 1980 and 2000, Buist said. Men were more than twice as likely to die of the disease in 1980, but the death toll in 2000 was essentially the same.

She added that COPD “is often thought of as a self-induced disease,” but “it also occurs in non-smokers.”

“It is incredibly important to remove the stigma,” Buist said, adding that the disease “is no more self-induced than heart disease.” She said that direct costs in 2002 were $18 billion, and the indirect costs run to slightly more than $14 billion.

Given the current mindset in Congress to keep overall spending flat, any campaign to boost spending on COPD might fall on attentive ears — but attached to hands that are tied, especially given that the NIH budget is up from $10 billion in 1993 to more than $30 billion this fiscal year.

During the “Q&A” session, Nabel said that “[w]hen funding is tight, we have to think about protecting our core values.” However, she did not directly address the possibility of channeling other existing NIH funds into COPD research.

However, she told Medical Device Daily that NIH funds “close to $1 billion on lung research on lung issues” and that there is extensive overlap in the utility of that research across disease states.

She described the $50 million listed in conference materials as being dedicated to COPD research as “a vast underestimate,” explaining that the number is derived by use of a coding scheme to pick up research that is titled in connection with COPD.

Ted Koppel, who was present at the briefing, declined to answer questions for the record.