For twenty-five years, Grace Anne Koppel has lived with a disease the world largely associates with choices she never made — she has never smoked, yet severe COPD claimed 72 percent of her lung capacity and nearly claimed her life. Her survival, improbable by any clinical measure, has transformed into a public mission: to dismantle the stigma that leaves millions of patients — many of them never-smokers — without adequate care, funding, or recognition. Through the Dorney-Koppel Foundation, she has carried pulmonary rehabilitation into rural America, where the disease is most prevalent and leas
Grace Anne Koppel Defies COPD Odds, Advocates for Disease Awareness
Breath is life. When you are deprived of breath, you're deprived of hope.
When you were first told you had three to five years, what did that moment feel like?
It was a slap to the soul. You're sitting there being told your life has an expiration date, and you have to choose: do you give up, or do you fight? I chose to fight, but I won't pretend it was noble. It was survival.
Your family doctor missed this entirely. How does that shape the way you think about diagnosis now?
It taught me that a complete physical isn't complete if it doesn't include the lungs. I was told to lose weight. No one listened to what my body was actually telling them. That's why the clinics matter so much—we're trying to make sure no one else falls through that crack.
You mention that breath is life. But you're living on supplemental oxygen now. Does that change what life means?
It changes the logistics, not the meaning. Yes, I have to plan. Yes, I carry batteries. But I'm still here. I'm still doing things that matter. The oxygen is just the tool that lets me keep going.
Why do you think COPD carries such stigma when most people with it never smoked?
Because people need someone to blame. Smoking is easy to blame. But pollution, wildfire smoke, occupational dust—those are systemic problems. They're harder to talk about. It's easier to say someone did this to themselves.
What do you want people to understand about living with this disease long-term?
That it's not static. It's not like you get diagnosed and then you know what your life will look like. Every few years, something shifts. You need more oxygen. You can do less. You have to keep adapting. That's the real burden—not the diagnosis, but the constant adjustment.
Le Pouls
- A misdiagnosis — a doctor who ordered no breathing test and told her to lose weight — allowed a catastrophic illness to advance until she collapsed on vacation, wheezing and unable to sleep.
- Told she had three to five years to live, Koppel refused the prognosis and pursued aggressive treatment, eventually stabilizing at roughly half her predicted lung function — a recovery her own doctors did not expect.
- The disease has grown heavier with time: for three years she has required supplemental oxygen whenever she moves, forcing every appointment and social encounter to become a logistical calculation around batteries and power.
- The stigma she fights is stubborn — COPD is widely seen as a smoker's punishment, yet 25 to 40 percent of its 380 million sufferers worldwide have never touched a cigarette, their illness born from pollution, occupational exposure, and secondhand smoke.
- The Dorney-Koppel Foundation has opened eleven pulmonary rehabilitation clinics in rural America, and new biologics like tozorakimab are advancing through trials — but research funding and market approval remain unfinished battles.
For twenty-five years, Grace Anne Koppel has lived with a disease the world largely associates with choices she never made — she has never smoked, yet severe COPD claimed 72 percent of her lung capacity and nearly claimed her life. Her survival, improbable by any clinical measure, has transformed into a public mission: to dismantle the stigma that leaves millions of patients — many of them never-smokers — without adequate care, funding, or recognition. Through the Dorney-Koppel Foundation, she has carried pulmonary rehabilitation into rural America, where the disease is most prevalent and least treated, insisting that breath is not a privilege but a right worth fighting for.
Grace Anne Koppel was given three to five years to live. That verdict arrived in 2001, after a year of misdiagnosis — a family doctor who dismissed her severe breathlessness, ordered no pulmonary test, and advised her to lose weight. It took a collapse on a family vacation, and a pulmonologist's first examination, to reveal the truth: she had lost 72 percent of her lung capacity. The diagnosis was severe COPD, and it came wrapped in clinical finality.
She chose not to accept it. She entered pulmonary rehabilitation, took her medications precisely as prescribed, and found physicians willing to treat her aggressively. Twenty-five years later, she functions at roughly half her predicted lung capacity — a recovery that defies both the odds and her doctors' early expectations. But COPD is progressive, and the years have accumulated. For the past three years, she has required supplemental oxygen whenever she stands or moves, planning every outing around battery life and power availability. Breathlessness, she says, is not merely physical — it is existential. It isolates. It erodes hope.
What animates her public voice is a misconception she finds everywhere: that COPD is the consequence of smoking, a disease people bring upon themselves. Koppel has never smoked. Neither have 25 to 40 percent of the more than 380 million people living with COPD worldwide — a population exposed instead to pollution, occupational hazards, and secondhand smoke. The World Health Organization calls it a silent killer, and the silence is enforced by stigma and chronic underfunding.
In 1999, she and her husband Ted founded the Dorney-Koppel Foundation. Recognizing that pulmonary rehabilitation had transformed her own prognosis, and that such care was nearly absent in rural America — where COPD rates are highest — she began building clinics. Eleven now operate across the country. New treatments, including the biologic tozorakimab, are advancing through clinical trials, but market approval and research investment remain elusive. Koppel continues to speak, because millions are living this disease in silence, and because she has learned, across twenty-five improbable years, that life is worth the fight.
Grace Anne Koppel was told she had three to five years to live. That was 1991. It is now 2026, and she is still here, still breathing, still fighting—though the fight has become harder each year.
She was diagnosed with severe chronic obstructive pulmonary disease in 2001, but the road to that diagnosis was a study in medical failure. A year earlier, she had gone to her family doctor complaining of shortness of breath so severe she could not walk half a block without stopping to catch her breath. The doctor performed what he called a complete physical, ordered no breathing test, and told her to lose ten pounds. She would feel like a new woman, he said. A month later, on vacation with her husband Ted—the longtime ABC News Nightline anchor—and their children, she collapsed. She was wheezing so badly she could not sleep. When they returned home and she finally saw a pulmonologist, the first test revealed the truth: she had lost 72 percent of her lung capacity. She was very severely ill.
The diagnosis came with a death sentence wrapped in clinical language. Doctors told her to prepare for the end of her life. She chose instead to prepare for living. She threw herself into pulmonary rehabilitation, took the medications prescribed to her, and found good doctors who treated her aggressively with bronchodilators, oral steroids, and pulmonary rehab—a regimen that, she says, changed her life. Twenty-five years later, she hovers around 50 percent of predicted lung function, a recovery that defies the odds and her own doctors' expectations.
But COPD is a progressive disease, and the years have taken their toll. For the last three years, she has needed supplemental oxygen whenever she stands or moves. She carries batteries and worries about power failures. She plans her days around oxygen availability—a dentist appointment, a meeting with friends, all require calculation. Breathlessness, she explains, is the disease's cruelest feature. It is not merely physical. It is existential. When you cannot breathe, you cannot hope. When you cannot move without oxygen, you become isolated. People sometimes despise you for it.
What drives Koppel's public advocacy now is a misconception she encounters constantly: the belief that COPD is a smoker's disease, a consequence of personal choice. She has never smoked. Neither have 25 to 40 percent of people living with COPD. The disease is born from environmental pollution, occupational exposure, secondhand smoke, and the air itself. Globally, the World Health Organization estimates that over 380 million people have COPD, making it the world's fourth leading cause of death. Yet it remains, in the WHO's phrase, a silent killer—overlooked, underfunded, stigmatized.
In response, Koppel and her husband established the Dorney-Koppel Foundation in 1999. About thirteen to fourteen years ago, after witnessing the transformative power of pulmonary rehabilitation in her own recovery, she began asking why such care was not available in rural America, where COPD prevalence is highest. The foundation now operates eleven clinics across the country, beginning in West Virginia. She has found purpose in watching people take control of their own lives, in spreading the message that COPD is not a death sentence but a life sentence—one that can be lived with dignity, with treatment, with hope.
The disease itself offers little room for optimism. There is no magic bullet, no single cure. Treatment is multimodal and deeply personal. Patients must exercise, eat well, take their medications precisely as prescribed, and remain vigilant against the progressive nature of the disease. New biologics show promise—AstraZeneca's tozorakimab, for instance, has demonstrated reductions in moderate-to-severe exacerbations in Phase III trials—but these treatments remain in development, awaiting market approval and expanded research funding that Koppel believes is long overdue.
Few public figures have stepped forward to tell their COPD stories. The stigma is too great, the association with smoking too entrenched. But Koppel, now in her ninth decade, continues to speak. She speaks because she lived when she was supposed to die. She speaks because millions of others are living with this disease in silence, without access to the care that saved her life. She speaks because breath is life, and life, she has learned, is worth fighting for.
Citations marquantes
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.— Grace Anne Koppel
This disease is not one where there's the magic bullet or pill. This is a disease where a patient has a part to play.— Grace Anne Koppel