Two decades ago, Grace Anne Dorney Koppel started experiencing severe shortness of breath, to the extent she couldn’t walk more than half a block without having to stop and rest. But after an examination by her family physician, she left the office without a diagnosis.
“What I heard was, ‘Lose 10 pounds, you’ll feel like a new woman,’” Grace Anne recalled. “Honestly, I thought I had a rare disease.”
When Grace Anne and her husband Ted turned to a major medical center, she was immediately given a spirometry test. Within minutes, they had an answer: Grace Anne had lost 27% of her lung function to chronic obstructive pulmonary disease (COPD).
“I had trouble breathing. It shouldn’t have been a mystery that I had chronic lung disease,” she recalled. “It should’ve been an easy diagnosis.”
Her set of circumstances, unfortunately, remains all too common. It’s estimated that of the 30 million Americans with COPD, somewhere between 12 and 15 million aren’t aware they have it.
On one level, that low degree of awareness is understandable, given that COPD is often mischaracterized as a smoker’s disease and that roughly 25% of COPD patients are non-smokers. On the other hand, those statistics don’t explain why so many physicians continue to miss the signs of COPD in patients who complain of breathing difficulties.
“It never even occurred to our family doctor – I should say our former family doctor – that it was COPD,” Ted said. “What he did, or failed to do, was tragically all too common. Many doctors in this country are convinced that the only thing that causes COPD is smoking.”
To that end, the Koppels have partnered with FCB Health New York on an extension of the “COPD SOS” campaign designed to grow COPD awareness among physicians and especially the “missing millions” who remain formally undiagnosed. FCB Health has been working with the Koppels on a pro bono basis for the last few years; the effort has been funded in part by GlaxoSmithKline. Other partner organizations include the COPD Foundation (for which Grace Anne previously served as president) and the American Respiratory Care Foundation.
Starting a few years ago, Ted interviewed 30-plus COPD patients in three different parts of the country, asking them about their experience with the disease and living with it during a pandemic. The footage adds emotional depth to PSA spots set to air on broadcast and cable networks this summer.
The campaign has several other appropriately ambitious goals, among them ending the disparity between cardiac rehabilitation and COPD pulmonary rehabilitation. The latter is reimbursed at half the rate of the former, even though, as Ted put it, “There is no difference in terms of the personnel or equipment required.”
The Koppels also aim to pressure Congress into recognizing – extremely belatedly – the scope of COPD’s devastation. The disease is funded to the tune of $100 million, but Grace Anne stressed that the sum isn’t as impressive as it might sound.
“You hear ‘$100 million’ and think, ‘Whoa.’ But it’s really nothing in terms of finding a drug that will stop the progress of the disease or cure it,” she said. Ted agreed, adding that COPD kills around 156,000 Americans every year (“more than the total number of Americans who died in Korea, Vietnam, Iraq and Afghanistan”), yet ranks 165th in terms of its funding from Congress.
Finally, the Koppels believe their efforts can provide hope to those enduring the secondary effects of COPD.
“So many COPD patients have been made to feel ashamed of their disease, because the assumption is, ‘Well, you’re a smoker, you had it coming,’” Ted explained, noting that COPD often leads to a series of cascading health issues. “Because of their COPD or as a function of their COPD, patients are not able to move as well as they could before. Many are overweight. Many end up getting heart disease. So now they’re homebound or bed-bound, and they have depression as a side effect.
“These are people who do not shout on behalf of their own illness,” he continued. “They need a couple of pushy people like Grace Anne and Ted to get out there and do it for them.”
As a COPD survivor who had initially been told she had as little as three years to live, Grace Anne is more than happy to fill that role.
“When people ask me if they’re at risk for COPD, I ask, ‘Do you breathe?,’” she said. “The point is that we are ignorant about this disease. That has to change.”