Grace Anne Dorney Koppel was diagnosed with chronic obstructive pulmonary disease (COPD) in 2001. The news set her on a course of aggressive rehabilitation—and advocacy.
Since January 2006, Grace Anne Dorney Koppel has served as a national spokeswoman and patient advocate for the National Heart, Lung, and Blood Institute (NHLBI) of the National Institutes of Health (NIH) to increase awareness of COPD, a group of lung diseases including emphysema, chronic bronchitis, and bronchiectasis that affects some 25+ million Americans—12-13 million of whom are undiagnosed and untreated. She has appeared on CBS Evening News, Good Morning America, The View, and other major venues to draw attention to NHLBI's Learn More Breathe Better® education campaign. Dorney Koppel is a member of the Board of Directors at the COPD Foundation.
A graduate of Fordham University (BA), Stanford University (MA), and Georgetown Law (JD), Dorney Koppel is a practicing attorney and business manager for her husband, former Nightline anchor Ted Koppel. She is president of the Dorney-Koppel Family Charitable Foundation, one of whose missions is to provide start-up funding for pulmonary rehabilitation centers.
Dorney Koppel spoke recently to NIH MedlinePlus magazine.
What should Americans understand about COPD?
Not being able to catch your breath and the fear that your next breath may not be coming is like drowning. Nothing is more frightening. Nothing makes you feel more alone. Then, being told that you have a disease that is incurable … It's almost as though the goal is to make COPD patients give up and go away.
Well, we're not alone. There are an estimated 25 million of us, only half of whom have been diagnosed and are receiving any kind of treatment. That's a national scandal. The medical profession has an ethical obligation to improve the level of diagnoses. And once they identify the disease properly, there's an even greater obligation to teach their patients the difference between incurable and untreatable.
There's a simple, inexpensive breathing test, called spirometry, that can identify COPD.
Is treatment effective? Well, in 2001 I was told to begin making end-of-life preparations in three to five years. That was 13 years ago.
What have you done to help slow the effects of COPD in your own case since you were diagnosed in 2001?
Doctors can give us the tools to treat our disease, but if we don't use them properly, the best tools can't help. Doctors can prescribe inhalers to open our airways, but if we don't use those inhalers on time and follow the directions on exactly how to use them, they're going to be of limited help. Doctors can recommend annual flu shots and getting the pneumonia vaccine, but we're the ones who have to follow up.
Perhaps the best advice I received from a doctor was to exercise. Understand, though, we're not training for the Olympics. We're trying to get as much as we possibly can out of a damaged set of lungs. Many COPD patients are on oxygen. They can barely walk.
Exercise sounds like a bad joke.
If your doctor doesn't offer it, ask for a prescription for pulmonary rehabilitation. Under controlled conditions, with the guidance and the support of a trained respiratory therapist, COPD patients who could barely stand without help, can make extraordinary progress.
When I was diagnosed with COPD, I was in a wheelchair. My lung capacity was at 26 percent of predicted capacity. As I said earlier, I was told I'd probably be dead by 2006.
I'm still here. My predicted lung capacity is at 50 percent. I work a 12-14 hour day, every day; and I find time to do a couple of miles on the treadmill at least five days a week.
Recent research has confirmed that women are more susceptible to COPD and develop symptoms earlier than men. What needs to be done to address this gender disparity?
Through recent research, we have come to realize just how severely women—66 percent of COPD patients are women—have been affected by COPD. Women have more symptoms than men: shortness of breath, constant coughing, wheezing. They have more flare-ups than men and more hospitalizations than men. No one fully understood this until a 2012 report was released from an NIH-funded nationwide study conducted by the Centers for Disease Control and Prevention (CDC). COPD kills more women than breast cancer or ovarian cancer combined. We have smaller bodies. Our lungs are smaller, and the airways are smaller. And that may make us more susceptible to COPD.
Part of what needs to be done is, of course, to educate. Make people know that not only does the disease manifest itself from middle age on, but also that women have a more toxic reaction. Gender is not the only disparity in COPD. Those in the lower levels of socioeconomic tiers are typically hit the hardest.
COPD has had something of a stigma attached to it because of smoking as a primary cause. Is this going away with better understanding of the disease?
Smoking is a primary cause of COPD, and the first thing any smoker should do is quit! But about 25 percent of those with COPD never smoked a cigarette. There are environmental, industrial, and genetic causes of COPD.
Almost every form of prejudice is the result of ignorance. The simple reality is that many among the public and far, far too many doctors still blame their COPD patients for their disease. Often, we end up penalizing COPD patients who simply grew up in a home where there was smoking, or who worked in an industry environment where there were airborne toxic agents.
I was a smoker. I stopped, though, many years before I was diagnosed with COPD. That's very often the case. Smokers quit, but the disease catches up with them in their 40s or 50s. We need to encourage smokers and former smokers to seek early testing for COPD if they have symptoms. It makes no more sense to blame the smoker for her disease than it does to humiliate the overweight heart patient. We need to encourage good behavior. Guilting a patient who already suffers from fear, low self-esteem, and the knowledge of an incurable condition is, quite simply, cruel and unhelpful.
The NIH's COPD Learn More Breathe Better® Campaign Network is now in all 50 states and the District of Columbia. What has been the key to its success?
The key to its success has been its ability to serve as an "honest broker" to bring together organizations that are also committed to educate and improve the lives of Americans with COPD. But "success" is a relative term. While most Americans still don't view COPD as a disease that could occur to them or their family members, it is the No. 3 killer of all Americans, behind only heart disease and cancer. It is the No. 2 disease that disables Americans. Patients suffering from nine of the top 10 diseases in the United States are decreasing in number. The one exception is COPD.
One goal for NIH has been to empower their partners, those organizations that are collaborating with them to spread the awareness message and establish communities at the state and regional levels. The goal is for each state to have a COPD action plan. There are only nine states that do. NIH has activated partners to educate the public in all 50 states.
Another goal of the "Learn More Breathe Better" campaign is to encourage medical professionals to diagnose COPD earlier and listen for COPD symptoms when patients complain that they are breathless or have persistent coughing. Doctors! Please! Listen to your patient. When the patient talks about breathing problems, test for COPD. It's hard to think of another area in which progress is more important.
For the last four years, you and your husband, Ted, have been working to improve the knowledge about—and availability of—pulmonary rehabilitation clinics. Tell us about that.
- COPD is the third leading cause of death in the United States and causes serious, long-term disability.
- COPD kills more than 130,000 Americans each year. That's one death every 4 minutes.
- More than 12 million people are diagnosed with COPD.
An additional 12 million likely have COPD and don't even know it.
- November is National COPD Awareness Month. As part of National COPD Awareness Month, the COPD Learn More Breathe Better® program encourages Breathe Better Network members and all those interested in raising COPD awareness to conduct events, discussions and other types of outreach to help start the conversation about COPD in your community.
Pulmonary rehabilitation is a breathing program based on the highest level of scientific evidence that can improve patient's lives. We need to improve quality of life of COPD patients now and not wait decades for a cure. That is where I have focused my attention lately.
My husband, Ted, and I have used our resources to locate other partners to help establish pulmonary rehabilitation centers where there are none. There are not enough pulmonary rehab centers and, where they do exist, it's in the big cities. Our first COPD Clinic is located in southern Maryland, our home state. We have, with the help of our partners, funded three other rehabilitation centers in West Virginia. Two more are opening there in the near future, and we hope soon to establish a couple more in North Carolina, with the help of local partners there. In each of the centers, we involve the community, and our funding has to be matched by the community or institutions in the community.
The Grace Anne Dorney Pulmonary Rehabilitation Clinics are intended to empower people to learn about the management of their disease—to exercise, while being monitored—and to gradually get their lives back. They learn about COPD, set a goal at the beginning of the program, and when they meet those goals they gain confidence and an ability to manage the disease.
Seeing people who have lost hope and physical function get their own lives back is the most rewarding thing we have ever done.