At just 9 years of age, Michael's sister offered him a cigarette. That was just the beginning. After more than three decades as a smoker, Michael was diagnosed with chronic obstructive pulmonary disease (COPD) — one of the leading causes of death in the United States.
Michael no longer smokes. But by the time he quit, it was too late. His lungs were irreversibly damaged.
Now in his 50s, Michael is taking part in Tips From Former Smokers, an anti-smoking campaign by the Centers for Disease Control and Prevention (CDC).
According to John W. Walsh, President and co-founder of the COPD Foundation, Michael's story is an important step forward for COPD awareness. Walsh offered his congratulations to the CDC for including COPD for the first time in its public awareness campaign.
“I also commend the CDC for this forward movement,” said Dawn Lesley Fielding, BS, RCP, AE-C, Pulmonary Rehabilitation Clinical Specialist and founder of the Chronic Lung Alliance. “COPD reached its position as the third leading cause of death worldwide eight years sooner than anticipated, which demands attention. It is time to move beyond the point of speculation and disregard to one of action.”
The term COPD refers to a group of lung diseases that includes emphysema, chronic bronchitis, refractory (non-reversible) asthma and certain types of bronchiectasis (damage to the lungs' airways caused by abnormal stretching and widening). Smoking is the leading cause of COPD.
As time goes by, people with COPD find it more and more difficult to breathe — a lesson Michael found out the hard way.
Michael was diagnosed with COPD when he was 44 years old. But he did not quit smoking right then and there. He ignored his symptoms for years, and when he was 52, he got the jolt of a lifetime.
Michael woke up one day struggling for air. As he described it for the CDC campaign, "It was 4 hours of stark raving terror. I was suffocating to death. Every cell in my body was screaming for oxygen!" During his ride to the hospital, Michael recalls wondering if he was going to die.
That was the day he quit smoking. "Losing your breath is losing your life force," he said.
Since that traumatic day, Michael has had the damaged parts of his lungs removed, allowing healthier lung tissue to work more effectively. Unfortunately, though, COPD does not get better; the progressive deterioration of lung function can only be slowed. Michael still needs a lung transplant, but he is weak and unsure if he would survive surgery.
Michael is a veteran and Alaska Native of the Tlingit tribe. He finds pleasure in the company of his daughter and two grandchildren. But without a lung transplant, it is doubtful he will see them grow up.
In a CDC video, Michael gave smokers his advice. "I have a tip for you: if your doctor gives you 5 years to live, spend it talking with your grandchildren. Explain to them that your grandpa is not going to be around anymore to share his wisdom and his love," he said while holding back tears. "I haven't figured out how to do that yet, and I'm running out of time."
A Common Story
Michael's story is a common one that highlights the multifaceted impact that COPD has on so many Americans. This deadly chronic disease not only affects patients' physical health but also their overall quality of life.
According to a CDC report, chronic lower respiratory diseases, which include COPD, were the third leading cause of death in the United States in 2009.
Another CDC report found that 6.3 percent of American adults (an estimated 15 million people) have been told by a doctor or other health care professional that they have COPD.
More than 13,000 of these patients were surveyed about various aspects of their COPD and life with the disease. A total of 76 percent of those surveyed said they had taken a diagnostic breathing test such as spirometry — a common test used to diagnose COPD and other conditions that affect breathing.
After the CDC researchers adjusted their results for age, COPD was more common among smokers than former smokers or those who never smoked. About 13 percent of smokers reported having COPD, compared to 6.8 percent of ex-smokers and 2.8 percent of never smokers.
The survey of COPD patients also showed that about 64 percent said they felt that shortness of breath affected their quality of life.
In addition, employment status was linked to COPD diagnosis.
The survey of COPD patients revealed that diagnoses with a breathing test increased with age.
But COPD Foundation President John Walsh stresses that COPD is not just a disease that comes with age. The survey showed that rates of COPD were higher among those who were unable to work, unemployed or retired than among those who were homemakers, students or those with jobs.
More specifically, COPD prevalence was 20.9 percent among those who were unable to work, 7.8 percent among the unemployed and 7.6 percent among the retired, compared to 4.9 percent among homemakers or students and 3.8 percent among the employed.
Despite these numbers, a great many COPD patients are still working.
"There is a misperception that COPD affects only older people," Walsh told dailyRx News. "But a majority of patients are still in the workforce."
According to Walsh, about 70 percent of COPD patients are still in the workforce, which can lead to a lot of problematic situations.
The COPD Foundation is working to boost employer awareness of COPD, Walsh said.
"Employers must be aware of absenteeism and presenteeism (attending work while ill) as well as disability," he said. "If we can get people diagnosed properly, get them on the right medications, treat symptoms and maintain mobility, we can improve quality of life."
The idea is that, with a proper diagnosis and treatment, patients will not get sick as often and will be able to maintain more of a normal lifestyle, Walsh said.
"Just being able to walk or play with grandchildren would improve quality of life," he said.
Walsh also noted that depression is one of the biggest comorbidities (other conditions occurring at the same time) among COPD patients. "And that's just because patients can't keep up," he said.
Moving in the Right Direction
Efforts to combat tobacco use and advocate for clear air have supported better lung health. However, according to Walsh, there has been less focus on COPD as a chronic disease.
“It's important to include COPD with cancer, heart disease and diabetes as the most devastating results of smoking and air pollution,” Walsh said.
"COPD was not part of the CDC campaign before, which was puzzling to us," he said. "COPD was being addressed as a tobacco control and clean air issue. It was not addressed as a chronic condition, even as it became the third leading cause of death."
Walsh acknowledged that COPD as a chronic disease finally seems to be on people's radar screen. And that was a goal of Walsh and his colleagues when they started their organization.
"We started the COPD Foundation because of a lack of active focus on efforts to inform, educate and advocate for COPD as a chronic condition," he told dailyRx News. “We're pleased to applaud the CDC for their current focus on COPD as a chronic condition.”
A Proper Diagnosis
According to the CDC data, an estimated 12 to 15 million Americans have been diagnosed with COPD. However, Walsh said there are another 12 to 15 million who have symptoms but are not diagnosed.
COPD is a progressive disease, meaning that lung function gets worse over time. While lung damage cannot be reversed, it can be slowed. For this reason, it is important to get an early diagnosis.
“The increased awareness of COPD would be extremely beneficial in that it could likely lead to earlier diagnosis,” said Fielding, who is also the author of The COPD Dilemma. “The average patient is symptomatic yet remains undiagnosed for 10 to 15 years, during which time lung deterioration continues.”
Fielding continued, “It is estimated right now that there is another 15 million Americans symptomatic, yet undiagnosed. If the public knew the 'signs' to watch for, it could lead them to their physicians earlier, which could lead to earlier diagnosis and hopefully changes in lifestyle to slow disease progression."
In Michael's case, lung damage has already progressed too far. He has lost so much function and needs a lung transplant.
"We don't have the therapies to regenerate lung tissue yet," Walsh said. "The reality is you lose lung tissue and you never get it back. The tragedy is that most people have lost more than 50 percent of lung function.
"We need people to be diagnosed and treated earlier, to be adherent to health care provider instructions and prescriptions, and to become as active as possible," he said. "There's no reason [patients] can't live an all but normal life. We just have to get them diagnosed before they can't move around."
According to Fielding, “Proper diagnosis is important in order to provide the patient with correct education and proper treatment. As COPD is a combination of a variety of diseases, each patient's profile can be a little different. Patients like to understand what is happening inside their body. That knowledge helps them understand why they need to do things differently, such as to stop smoking, eat the correct foods, and practice breathing retraining. This knowledge also eases anxiety because they have facts to deal with, not speculation.
“Anxiety is already a huge problem with most patients, because when you can’t breathe, nothing else matters. They need a better understanding in order to perform optimally,” she said.
One of the main goals of the COPD Foundation is to "inform, educate, empower and engage."
"We are an organization that wants people to become advocates for themselves," Walsh said. "We want to inform patients and families about COPD. It doesn't matter how you got it (tobacco, workplace, environment or genetics). It's a chronic condition that is progressive, and you have to do everything you can to slow the progression."
A proper diagnosis is crucial in any patient's effort to slow COPD progression. Unfortunately, like Michael, many patients don't get diagnosed until they've lost a great deal of lung function.
According to Walsh, part of the problem is that people don't want to hear that their breathing troubles are caused by COPD.
Fielding said that diagnoses could be improved by starting with healthcare providers asking their patients specific questions at earlier stages.
“Many patients don’t realize that their choice to take the elevator instead of the stairs could be related to a shortness of breath due to lung function deterioration and simply blame it on aging or 'being out of shape,'” said Fielding.
“Others don’t realize that their chronic cough is not normal, or that coughing up large amounts of mucus is not normal. Others may not connect the fact that their work environment or exposure to irritants may have caused problems. Many think that smoking is the only cause of this disease. Specific questions geared toward habit changes such as these examples could help point out symptoms in an earlier stage which would lead to earlier diagnosis,” she said.
“This is not an 'old person' disease, and we need to transition from that frame of mind,” she stressed.
The good news is that it's fairly easy to get a diagnosis. Spirometry is a simple test conducted by most family doctors.
Before going to the doctor, people who are concerned that their shortness of breath is caused by COPD can take a five question risk screener at Drive4COPD.org. The risk screener, which takes only a few minutes, can help people find out if they are at risk for COPD. This risk screener cannot offer a diagnosis, but it can guide patients to a doctor for a proper diagnosis.
"I really hope that people who are having difficulty breathing understand that it's not normal," Walsh said. "They need a proper diagnosis and should talk to a health care provider."
With regards to the CDC campaign, Walsh said, "Maybe it will trigger people who are smokers or having difficulty breathing to get tested. They can take the five-question risk screener, get spirometry and listen to what their doctor prescribes."
According to Walsh, the big take-home point is to "take action today, breathe better tomorrow."
“Too often patients come to me without proper knowledge on how to use their inhaler, or wondering why they need oxygen,” Fielding said. “It is unacceptable for this to be the case. With proper education and availability through healthcare providers, these patients could maintain their conditions in a much more efficient manner, reducing overall expenses including direct medical expenses, absenteeism, presenteeism, and improving quality of life.
"It is all about education," she said. "A diabetic gets a (much needed) proper education on how to eat from a qualified dietician. As a disease that kills more people each year than breast cancer and diabetes combined, shouldn’t [COPD] be treated the same? Educate. Improve. Empower.”