Grace Koppel calls chronic obstructive pulmonary disease (COPD) an unsexy disease and believes that’s why so many people still know so little about this serious, chronic condition. She and her newsman husband, Ted Koppel, were recently seen on CBS This Morning discussing their disease. It’s one of the leading causes of death in the United States, the third killer after heart disease and cancer, and among women, it’s even more deadly than breast and ovarian cancer combined.
In an initial interview with the CBS morning team, Grace shared that when she was diagnosed with COPD she was given only a few years to live. She has since defied the odds and is 16 years post-diagnosis, appearing to be going strong. Grace laments in the interview that there has been no progress in finding a cure for the disease. She also shares that similar to her, many individuals have a persistent cough or other non-specific respiratory complaints that remain undiagnosed for some time, allowing the disease to progress before it’s finally identified and managed.
As a pulmonologist, I often get patients referred to me who say: “The heart doctor checked my heart and told me it’s in my lungs.”
Grace’s complaints included increasing difficulty breathing with normal exertion (walking across a room), requiring pillows so she could prop herself up to breathe at night, and serious shortness of breath climbing stairs. As a physician, I can tell you that these complaints could also indicate early congestive heart failure. Grace was initially told to lose weight (she was carrying excess pounds) and that her symptoms would improve. Again, it’s not unreasonable to link quality-of-life issues to obesity; however, a respiratory evaluation was likely indicated at that point.
It’s important to note that though COPD is strongly linked to current and ex-smokers, 25 percent of those diagnosed never smoked a cigarette. Individuals exposed to dust, vapors, or gases at work or in the home environment are also at higher risk of developing COPD.
In a separate CBS interview, Ted covered this very personal story, interviewing Grace. He admits that while the information he offers is “factual,” it is hard to be dispassionate because this is the story of his wife and her disease. He describes COPD as a “basket of lung diseases including emphysema, chronic bronchitis, and some forms of asthma.” He describes the commonality among these conditions as “making breathing difficult, often very difficult.” In the interview, he confesses that the day she received the diagnosis was the worst day of their life. They were told she had an irreversible disease with no cure. With the estimated prognosis given as three to five years, Grace describes feeling like standing on the edge of a cliff and already beginning to fall.
When Ted says to Grace: “But here we are 16 years later and you are still going strong,” she smiles for the first time and says: “I am.” Grace is famous for saying breath is life — and she asserts that “when you can’t breathe, nothing else seems to matter.”
I would suggest that most of my patient population would agree with that statement.
Ted and Grace have made it their mission to raise awareness about COPD, to highlight that it can be treated and managed. They also point to the fact that they are financially able to avail themselves to all necessary treatment, including pulmonary rehabilitation — a component of COPD management that is not covered by many insurance companies. With 16 million Americans already diagnosed with COPD, and another 10-15 million likely in the early stages but undiagnosed, this is also a costly disease to the public health sector.
West Virginia, coal country, has been identified as large location of COPD victims, black lung disease (emphysema) being the prevalent diagnosis. Ted and Grace helped to propel a pulmonary rehabilitation program in one black lung community. Cabin Creek Health Center in Dawes, West Virginia was funded through a joint effort four years ago and offers pulmonary rehabilitation to patients who otherwise would not have access. Results from the program were significant enough to push through funding for an additional 10 rehabilitation clinics in West Virginia. Pulmonary rehabilitation is not a cure — but it can help. It allows people to live better, to breathe better, and to have better quality-of-life.
One doctor featured in the interview suggests that preliminary results from these programs show that among the patients, there are fewer hospitalizations, fewer readmissions, and fewer ER visits.
It’s important to note that it is not clear when Grace finally had a pulmonary function test (PFT) to assess her respiratory status. It should demonstrate the typical features of COPD which are different from other respiratory disorders. This test IS accessible and should be done when shortness of breath does not have a clear explanation. From my perspective, pulmonary rehab is a crucial element of disease management.
Unfortunately, most insurers offer coverage when the patient is “severely compromised.” At that juncture, they are typically suffering tremendously from respiratory symptoms and lack motivation. Pulmonary rehab could certainly have a beneficial impact at an earlier stage of disease, so making it available earlier in the diagnosis, would be of benefit to so many of my patients who would likely have the motivation to commit to the program – if insurance coverage was available. If this awareness campaign is successful, then many of my own patients may be lucky enough to reap the benefits.
Grace jokes that she’s lived beyond her “use by” date. At the end of the interview, she poignantly asks her husband if he is still prepared to stand by her side “till death do us apart.” He strongly acknowledges that, “he is,” but you can sense that he’d like many, many years.
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Eli Hendel, M.D., is a board-certified internist/pulmonary specialist with board certification in Sleep Medicine. An Assistant Clinical Professor of Medicine at Keck-University of Southern California School of Medicine, and Qualified Medical Examiner for the State of California Department of Industrial Relations, his areas include asthma, COPD, sleep disorders, obstructive sleep apnea, and occupational lung diseases. Favorite hobby? Playing jazz music. Find him on Twitter @Lung_doctor.