In 2001, a doctor diagnosed Grace Anne Dorney Koppel with chronic obstructive pulmonary disease, or COPD, telling her she had just three to five years left to live.
She and her husband, long-time “Nightline” anchor Ted Koppel, held each other in bed that night and sobbed.
She was given a prescription for a treatment called pulmonary rehabilitation, as nearly two-thirds of patients report positive outcomes from the treatment, according to one study. But her doctor told her to write out her advance directives in case her death came suddenly.
“If someone in a white coat asks you that, it will slap your soul,” she said. “I was not ready for that. I guess none of us are.”
As lung damage increases, a gradual onset of COPD can often go unnoticed for years. By the time she visited a doctor, Dorney Koppel, a lawyer, was struggling to breathe every day and couldn’t manage to walk more than a few dozen yards.
Tests showed the former smoker had lost 75% of her lung function. She needed to use a wheelchair, because even walking a short distance had become impossible.
What is COPD?
COPD is America’s third most fatal chronic disease, with a five-year survival rate of 40% to 70%.
The two most common types of COPD are emphysema and chronic bronchitis, and those with the disease have airways that are partially blocked, according to Medline. Initial symptoms can include cough, sputum production and shortness of breath, especially on exertion, which limits their activity.
And the disease affects populations well beyond smokers.
It’s common among construction workers as well as firefighters and first responders, and rampant among those who lived in lower Manhattan during and after the World Trade Center terror attack.
The Centers for Disease Control and Prevention has also tracked increased COPD prevalence among office workers, stemming from paper dust and fumes from photocopiers, chemicals, and oil-based ink.
Sixteen million Americans are currently diagnosed with the disease and COPD is expected to cost the country $49 billion in 2020, according to the National Institutes of Health, though millions more are thought to be undiagnosed. Each year it kills 155,000 people.
“That is more than all the Americans who died in Korea, Vietnam, Iraq and Afghanistan put together,” said Ted Koppel, who covered multiple wars as a correspondent and anchor.
Since 1969, the death rate for COPD has doubled, even as the number of deaths for other chronic diseases has fallen.
Patients are concentrated in rural areas, with states such as West Virginia having some of the highest prevalence rates.
“These people are isolated by economics. They’re isolated geographically,” Koppel said. “And they’re isolated because this is a disease that makes people ashamed if they got it through something like smoking.”
A study published this year in the European Respiratory Journal showed that air pollution can age the lungs, increasing the risk for COPD. Earlier studies have shown that four in 10 Americans live in areas with air that has unhealthy levels of particulate pollution or ozone. And as the climate crisis makes air quality worse, rates of COPD are expected to climb.
In short, anyone with lungs is susceptible.
They’ve been fighting COPD for decades
A decade and a half beyond the life span her doctor gave her in 2001, Dorney Koppel credits pulmonary rehabilitation for her vitality, and has spent much of her life trying to help others find that same breath of life.
Pulmonary rehab is the standard care for COPD patients and includes directed exercise as well as nutrition guidance and support for those with lung diseases. But only 3.7% of Medicare-eligible COPD patients undergo the rehab, due in part to a 2010 rule change in Medicare’s reimbursement policies. That change likely led to a similar procedure, cardiac rehab, being eligible for double the federal reimbursement rate of pulmonary rehab, the California Society for Pulmonary Rehabilitation says.
Dorney Koppel doesn’t shake people’s hands, preferring to greet new faces with an elbow bump, to avoid catching germs. “Every cold, every flu, could be fatal,” she said.
Her husband, who hosted ABC’s “Nightline” for 25 years, has been playing a supportive role, speaking up about the disease with the same baritone voice that delivered the news to millions of Americans every night for decades.
The couple met at Stanford in the early 1960s, where they both earned master’s degrees.
Before long, Koppel was covering the civil rights movement in Selma, Alabama, in 1964, and later they moved their young family to Hong Kong, when he became an ABC correspondent covering Vietnam.
In the 1970s, and now living back stateside, Koppel took a year off from his job as an anchor to stay at home with the couple’s children while Dorney Koppel finished her law degree at Georgetown University Law Center. After she graduated, she practiced law, focusing on criminal and civil litigation.
Now she has a new role: spokeswoman. In her fight against COPD, Dorney Koppel says one of her greatest weapons is that she’s “married to a celebrity.” Beginning in 2006, Dorney Koppel became the national spokeswoman and patient advocate for the National Heart, Lung, and Blood Institute.
“I’m an attorney. I’m a behavioral scientist. I’m a wife and mother. Why should I do this?” Dorney Koppel asked. “I made the decision: I’ll give up my privacy because there are so many people [with COPD] out there. I hope I can empower them to come forward.”
She and her husband cofounded 12 pulmonary rehabilitation centers across five states, focusing on placing them in rural communities, where COPD is more common. The clinics are funded in part through the Dorney Koppel Family Charitable Foundation.
In addition to the clinics and being a spokeswoman for the condition, Dorney Koppel became the president of the national COPD Foundation in 2016.
Koppel, who in his post-“Nightline” career now serves as a senior CBS “Sunday Morning” contributor, has fronted several recent news stories for the network about COPD.
Through running their clinics, they’ve come up against a core issue that’s hamstrung progress against COPD: It’s hard for hospitals to make money off pulmonary rehab.
A major COPD solution is hard to fund
If there’s a consensus that pulmonary rehab is the best treatment, why isn’t it available everywhere?
“My theory on it is the typical journalist thing. Follow the money,” Koppel said.
“Where there are diseases with treatments that can create huge earning capabilities – whether it be for medical professionals or the pharmaceutical industry – you’re going to see a lot of money being spent on those diseases,” he said.
But Medicare only reimburses pulmonary rehab at 50% of the rate of cardiac rehab, according to the California Society for Pulmonary Rehabilitation.
That’s a key stumbling point in making pulmonary rehab available to a wider part of the US population.
And it’s hurting the Koppels’ own efforts to keep running their rural rehab clinics. A couple of clinics may not be financially sustainable, Koppel said.
A brainstorming session at Stanford
In September, the Koppels returned to their alma mater for the Stanford Medicine X conference, an annual gathering of innovative health minds.
They virtually took over the conference with a “Grand Design Challenge” focused on COPD and teamed up with the IDEO design firm that worked with Apple to create the first computer mouse.
Koppel says IDEO had stuck in his head for years because “Nightline” got more requests for recordings of its 1999 episode about building a better shopping cart with IDEO than any other in the show’s history.
Turning loose young, innovative minds on COPD generated some leads, Koppel said.
For instance, at the end of the two-day challenge, one group presented a scheme in which COPD doctors and therapists might create a national certification program by which gyms such as LA Fitness or Gold’s Gym might offer COPD-related pulmonary therapy services, at a time when rural hospitals are increasingly closing.
Another outside-the-box idea to scale pulmonary therapy nationally was to add the services at Walmart, similar to the optometry centers the retailer already operates in its stores.
Another group suggested a partnership with NASCAR, a sport popular in rural states where COPD cases are more prevalent. Dorney Koppel said the COPD Foundation had once had a similar partnership, Drive4COPD, and it could be worth exploring again.
“This kind of creative approach may be a way of opening doors that have been closed,” Dorney Koppel said.
Her personal struggle still helps fuel the fight
Dorney Koppel’s frequent personal symptoms keep her focused on the importance of helping the broader COPD patient population.
Even 18 years later, after years of pulmonary rehab, she still feels periodic crippling attacks due to COPD.
“Tears roll down my face. I struggle for breath,” she said. “Each breath feels like it can be the last breath.”
A few weeks ago she had one of those attacks. “I suddenly started having chills. I couldn’t breathe at all,” she said.
She says she’s lucky she has a partner by her side.
“Ted was able to get my portable oxygen concentrator,” she said.
She got a breath of fresh air, and more than a decade after what she’s called her “use by” date, she’s still going strong in her campaign to help the world breathe a little better.