Short of breath, but still fighting

Patients, doctors and researchers lock hands and embrace the COPD National Action Plan.

It started as an ordinary press conference—a scientist, a doctor, an advocate, a patient, sitting around a table in the good spirit of enthusiasts breaking new ground. They were about to announce the release of the first National Action Plan to fight chronic obstructive pulmonary disease (COPD), a lung disease that ails millions, haunts families, and frustrates doctors and researchers alike.

Then suddenly, in front of the nervous eyes of organizers and reporters, one of the speakers, Grace Anne Dorney Koppel, began a slow, hacking cough that quickly escalated, forcing her to stand up and retreat to a corner.  

For the next ten minutes while Dorney Koppel’s cough ran its worrisome course, friends hovered in concern, and the speakers politely tried to resume the focus on the topic of the hour. And in those serendipitous moments, COPD unexpectedly gained a certain gravitas.

“Well, I was not intending to provide you with a demonstration of how COPD affects patients,” said Dorney Koppel, to the relieved laughter of the audience, after finally returning to her seat. But this, said Dorney Koppel, who is president of the COPD Foundation and a longtime COPD patient, is the life she leads. She was there despite being on antibiotics and prednisone for a respiratory infection. “This plan is that important to me.”   

The mini-drama provided a window into how one of the 16 million Americans diagnosed with COPD deal in real time with the coughs that, along with shortness of breath and wheezing, are the hallmarks of the disease. It also provided a convenient backdrop for talking about two troubling, yet little-known facts about COPD: that it is the third leading cause of death in the United States behind heart disease and cancer, and that it costs Americans more than $32 billion a year.

For Dorney Koppel, who with her fellow panelists unveiled the COPD National Action Plan at the American Thoracic Society International Conference meeting this May in Washington, D.C., those are just two of the many challenges the Plan aims to address. Developed by patients and scores of other agencies and organizations under the stewardship of the National Heart, Lung, and Blood Institute (NHLBI), the Action Plan, the speakers noted, also puts a critical spotlight on the devastating toll the disease takes on patients—physically and emotionally. 

“Not being able to catch your breath and fearing that your next breath may not come is just like drowning,” said Dorney Koppel. “It is frightening beyond words and feels very, very lonely.” Yet many people with these symptoms tend to attribute them to something else: the common cold, old age, being out of shape. This lack of awareness delays their diagnosis and treatment, worsening the condition and wreaking havoc on their quality of life. Even the most mundane tasks— doing light housework, bathing, dressing, taking a walk—can feel onerous, like climbing Mount Everest.

That is why the first goal of the plan is to empower patients and their families to recognize COPD and get treated if they suspect they are affected.  

“I was diagnosed in 2001 and was told COPD is incurable,” said Dorney Koppel. “But that does not mean [it is] untreatable. Doctors need to teach patients the difference. I was given three to five years to live…sixteen years ago.” 

Compounding the misinformation about COPD is the idea that it is exclusively a smoker’s disease, and that it mainly affects men. While COPD most often affects people over 40 with a history of smoking, as many as 1 in 4 people with COPD have never smoked. Long-term exposure to substances that can irritate the lungs or a genetic predisposition called alpha-1 antitrypsin (AAT) deficiency also present as risk factors for COPD.

As James P. Kiley, director of NHLBI’s Division of Lung Diseases, put it, “COPD is not a disease only of older men who smoked for decades. In fact, 56 percent of those diagnosed are women, and they die of COPD more than men do,” he said.

Yet unlike with heart disease and cancer, said Kiley, “COPD prevalence and deaths are not decreasing. One in five people over age 45 has this disease.

“You know someone who has it,” he added. “You may even have it and not know it.”

So how to reverse the trend? One key, said Dorney Koppel, is for health care providers to improve the level of diagnosis. “Spirometry is a simple and inexpensive breathing test that can identify COPD,” she said.

MeiLan Han, M.D., medical director of the Women's Respiratory Health Program at the University of Michigan in Ann Arbor, agreed, noting another goal of the Action Plan: to equip health care professionals with the tools they need to properly diagnose and care for people with COPD.

“That encompasses so much,” said Han. “We need to develop guidelines that are easy to follow for assessment and management of COPD. Then, we need to make sure they get into the hands of the providers on the front lines who are managing these patients.”

Han, who is also a spokesperson for the American Lung Association (ALA), said she is encouraged that the Action Plan offers a platform for talking honestly about the challenges that long have frustrated health professionals like her.  “I can’t think of another single chronic disease where just getting the correct diagnosis is so problematic, which underscores the need for provider education,” she said.

Developing an educational curriculum and tools for clinical decision making that are in sync with the guidelines for detection and management will significantly improve diagnosis and care, said Han. So, too, she added, will improving patient access to spirometry, pulmonary rehabilitation, smoking cessation programs and affordable medications—all of which are called for in the Action Plan.

“This plan represents a new understanding of what it takes, at every level, to minimize the burden of COPD,” said Gary H. Gibbons, M.D., director of NHLBI. Now, he said, it’s just a matter of getting to work to make it happen. “Through thoughtful collaboration with federal agencies, patients, advocates, and researchers, we will help the millions who continue to endure this debilitating disease,” he said.