You know the saying, “Where there’s smoke, there’s fire?” Well, Grace Anne Dorney Koppel is fired up about getting people to realize that where there’s COPD, there’s not necessarily smoking. Even though many people may associate COPD—which stands for Chronic Obstructive Pulmonary Disease—with smoking, many people with COPD have never smoked a single cigarette in their lives.
This is important news that Koppel—who’s been married to longtime ABC News’ Nightline anchor and managing editor Ted Koppel since 1963—wants to get out there. She also wants to raise more awareness of COPD in general. In a recent conversation, she told me, “I was diagnosed in 2001 with very severe COPD, and was not expected to live more than three to five years.” It’s now a quarter century later, and she’s clearly outlived those initial predictions. But it has nonetheless been a tough road. Koppel described COPD as “a lifelong progressive disease, and, of course, one never knows how long one has. But the progressive nature of it means that the breathlessness, the anxiety, the feeling that one is out of control, progresses as the disease progresses.”
Koppel Didn’t Get The Proper COPD Diagnosis Initially
Getting to the COPD diagnosis in 2001 wasn’t a straightforward road either. “I went to my family doctor, complaining of shortness of breath, inability to walk half a block as I had to stop and catch my breath,” she recalled. “My family doctor gave me what he called a complete physical, including proctology, but never ordered a breathing test. He told me to lose 10 pounds, and I would feel like a new woman.” In retrospect, that clearly was not the road to go.
“A month later, I literally collapsed,” Koppel related. “I was on vacation with my husband and my kids, and I was sitting up in bed at night. I couldn’t sleep, the wheezing sounds from my airwaves kept me awake.” This prompted Koppel to get majorly testy, so to speak. “When we got home, we made an appointment and went to a major medical center, and the first test they gave me was spirometry,” Koppel said. “I was diagnosed with very severe COPD. So that’s how I was diagnosed. I had lost 72 percent of my ability to breathe.”
When First Diagnosed With COPD, Koppel Was Told To Make End Of Life Preparations
That had meant that Koppel’s COPD has already progressed quite a lot. COPD is typically some combination of inflammation and swelling in your airways and damage to your alveoli. Now, alveoli may sound like some kind of pasta dish but are actually key-grape-like structures within the lungs where oxygen and carbon dioxide exchange occurs between the air in the lungs and the bloodstream. As such damage in the lungs progresses and accumulates over time it gets harder and harder to breathe. At some point, the damage gets so great that the lungs can no longer effectively provide oxygen to the rest of the body.
The news that such things had been going on in her lungs left Koppel breathless in more ways than one. “Initially, when your soul is slapped and you’re told you had COPD in just three to five years to live, you can do one of two things,” she told me. “You can either throw yourself into rehabilitation, or you can say that’s it. In fact, I was told to make end of life preparations.” Koppel chose the other option, “Instead, I tried to make life preparations. And I was fortunate that I had great doctors, that I had access to the medications that were available then and that I was able to go to pulmonary rehab, which was only a half hour away.”
COPD Was Denying Koppel Of Breath
That choice is easier said than done. The ability to breathe is kind of important because all those cells in your body need oxygen to do many of their basic functions. “It is not a nice disease because breath is life,” Koppel emphasized. “It is light. And when you are deprived of breath, you’re deprived often of hope.” The initial symptoms of COPD may be some shortness of breath, coughing, wheezing, fatigue or mucus production. But again, Koppel’s COPD was not in its initial stages. It was already much further along to the point that she was expressing breathlessness.
“Breathlessness is, according to surveys of most patients, the most significant disability that they feel,” Koppel explained. “And it increases to the point where perhaps you need supplemental oxygen. Maybe you only need it when you’re moving, then you need it all the time.” Being more limited in your movement and requiring supplemental oxygen bring further issues. “Then you are isolated and sometimes despised,” Koppel mentioned. “So it is a disease that is massive.”
Koppel Has Had Multi-Modal Treatment For COPD
Koppel did emphasize that she had access to good medical care, something that many patients COPD don’t have: “Fortunately, I was treated aggressively. I was put on bronchodilators and oral steroids, and the best thing I was given a prescription for pulmonary gray amp, that changed my life.” She added, “It was a long haul to getting back to where I truly could participate in life, but I was able to do it.”
One thing to keep in mind is that there isn’t one single treatment for COPD. “This disease is not one where there’s the magic bullet or pill,” in Koppel’s words. “This is a disease where a patient has a part to play. We must do all the things that we want to avoid like exercise, nutrition, all of these things are important, and if you don’t exercise and keep active, the disease engulfs you.”
Koppel mentioned several times how fortunate she has been to get the care she has gotten and how she’s lived a good longer-than-initially-expected life. But again, as she said, COPD is progressive. “My day to day has changed over these years. Now, for the last 3 years, I’ve been on supplemental oxygen when I stand and when I move. I was not prior to that, so this has been an adjustment process.” She continued by saying, “So now I have to carefully plan. If I’m going to the dentist, if I’m going to meet friends, I have to be sure I have enough battery. I have to worry about power failures. I have to worry about bad batteries. I have a whole group of things that I carry with me.”
COPD treatment and care has to be quite personalized since, “there are not many models to follow because this disease is heterogeneous, it manifests itself in many different ways,” in Koppel’s words. “Yes, my breathlessness has gotten worse. However, I do hover around 50 percent of predicted lung function, sort of miraculous that after 25 years, when I started at 26 percent of a predicted lung function, But mine is not a typical story.”
Koppel Has Started 11 Clinics To Help Those With COPD
Her experience motivated her and the Dorney-Koppel Foundation that she and her husband established in 1999 to start clinics to help give others the care that she got. “That started about 13 to 14 years ago,” she recalled. “Once I realized the benefits of pulmonary rehab and actually taking your medicines, the way they have prescribed, I wondered why it wasn’t available in the most areas with the highest prevalence of COPD in rural America. We began in West Virginia and now have 11.”
That work has breathed new life into her as well. “It has given me enormous satisfaction to see people begin to take control of their own lives,” she said. “This has enriched my life and has given me purpose. To spread the message that COPD is not a death sentence. It’s a life sentence right now.” With such clinics, Koppel is helping create environments for proper care and treatment.
Koppel Is Trying To Increase Awareness Of COPD
Speaking of environments, Koppel also wants to make it clear that COPD is not simply a smoker’s disease. “It’s a disease that 25 to 40 percent of people who’ve never smoked get,” she emphasized. “And globally, it’s not a smoking disease. It’s a disease of the environment, of pollution, of occupation, of secondhand smoke.” She mentioned concern over “all the pollutants that are in the air, which potentially could be getting worse over time.” Such pollutants can be both indoors and outdoors. Koppel mentioned her concerns about The Clean Air Act being weakened and how little is being done about the increasing number of wildfires, which I have covered in 2023, 2025, 2026 and, well you get the picture, in Forbes.
Speaking of global, Tedros Adhanom Ghebreyesus, PhD, the World Health Organization’s Director-General, and José Luis Castro, the WHO Director-General Special Envoy for Chronic Respiratory Diseases, co-authored a piece that dubbed chronic respiratory disease “the silent killer” and listed COPD as the world’s fourth leading cause of death. They wrote how “over 3 million lives are silently cut short by chronic obstructive pulmonary disease (COPD), a noncommunicable disease too often overlooked despite affecting over 380 million people globally.”
This overlooking of COPD has also meant that COPD research has been short on support and funding. Koppel hopes that this will change in the near future and has been lending her voice to advocate for more research and treatments to be develoepd. She did point out the promising Phase III clinical trial results for tozorakimab, AstraZeneca’s IL-33-targeting biologic, which showed a reduction in the rates of moderate-to-severe COPD exacerbations. But she’d like to see at some point such treatments reach the market and new biologics that specifically target COPD.
Few other well-known folks have stepped forward to tell their COPD stories due to the unfair ongoing stigma associated with the disease. But maybe Koppel can help breathe in more life to COPD awareness, prevention and treatment efforts.
