Grace Anne Dorney Koppel Reflects on 25 Years of Defying a Dire COPD Prognosis

Grace Anne Dorney Koppel, seen here with her husband, Ted, the longtime anchor of ABC News show Nightline, has been trying to raise more awareness about the condition that she was diagnosed with in 2001, Chronic Obstructive Pulmonary Disease or COPD. (Photo: Courtesy of Grace Anne Dorney Koppel)

Courtesy of Grace Anne Dorney Koppel

The adage “where there’s smoke, there’s fire” doesn’t always apply to Chronic Obstructive Pulmonary Disease (COPD). Grace Anne Dorney Koppel is determined to dispel the misconception that the disease exclusively afflicts smokers. In reality, a significant portion of COPD patients have never smoked. This message is central to the advocacy work of Koppel, who has been married to longtime ABC News Nightline anchor and managing editor Ted Koppel since 1963.

In a recent interview, she recalled her 2001 diagnosis: “I was diagnosed in 2001 with very severe COPD, and was not expected to live more than three to five years.” A quarter-century later, she has far outlived that initial prognosis, though the journey has been arduous. She describes COPD as “a lifelong progressive disease… the breathlessness, the anxiety, the feeling that one is out of control, progresses as the disease progresses.”

A Delayed Diagnosis

The path to diagnosis was not straightforward. “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 advice missed the mark entirely.

“A month later, I literally collapsed,” Koppel related. While on vacation with her family, she found herself unable to sleep due to wheezing. “When we got home, we made an appointment and went to a major medical center, and the first test they gave me was spirometry,” she 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.”

Facing End-of-Life Planning

The diagnosis confirmed the disease had advanced significantly. COPD typically involves a combination of airway inflammation and damage to the alveoli—the grape-like structures in the lungs where oxygen and carbon dioxide are exchanged. As this damage accumulates, breathing becomes increasingly difficult, eventually preventing the lungs from supplying adequate oxygen to the body.

The news was devastating. “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 said. “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 former. “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.”

The Debilitating Reality of Breathlessness

That choice required immense effort. Breathing is fundamental to cellular function. “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.” While early COPD symptoms include shortness of breath, coughing, wheezing, fatigue, and mucus production, Koppel’s case was already advanced.

“Breathlessness is, according to surveys of most patients, the most significant disability that they feel,” she 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.” The resulting limitations foster isolation. “Then you are isolated and sometimes despised,” she noted. “So it is a disease that is massive.”

A Multifaceted Treatment Approach

Koppel acknowledges her privilege in accessing high-quality care. “Fortunately, I was treated aggressively. I was put on bronchodilators and oral steroids, and the best thing I was given a prescription for pulmonary rehab, 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.”

She stresses that no single “magic bullet” exists for COPD. “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.”

While grateful for her longevity, she notes the disease’s progression. “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 detailed the logistical burdens: “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 care must be personalized. “There are not many models to follow because this disease is heterogeneous, it manifests itself in many different ways,” she said. “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.”

Expanding Access Through Clinical Care

Her experience drove the Dorney-Koppel Foundation, established with her husband in 1999, to open clinics in underserved areas. “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.”

The work provides her with purpose. “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.” These clinics create vital infrastructure for proper treatment.

Reframing COPD as an Environmental Health Crisis

Koppel is also intent on redefining public perception of the disease’s origins. “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 expressed concern over air pollutants—both indoor and outdoor—and the impact of weakening clean air regulations and increasing wildfires.

The global burden is staggering. World Health Organization Director-General Tedros Adhanom Ghebreyesus, PhD, and WHO Special Envoy for Chronic Respiratory Diseases José Luis Castro co-authored a piece labeling chronic respiratory disease “the silent killer,” noting COPD as the fourth leading cause of death worldwide. They wrote that “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 neglect extends to research funding. Koppel advocates for increased support and highlighted promising Phase III trial results for tozorakimab, an AstraZeneca IL-33-targeting biologic that reduced moderate-to-severe exacerbation rates. She hopes such treatments reach the market and that new biologics targeting COPD continue to be developed.

Few high-profile figures share their COPD stories due to persistent stigma. Through her advocacy, Koppel aims to breathe new life into awareness, prevention, and treatment efforts for the millions affected.

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