One cigarette a day — after 45 years of smoking, that’s all Helen Cleaves allows herself anymore. But it took a steep decline in her health to get the lifelong Shelby County resident this close to quitting.
“It’s in my head,” she says of nicotine — describing the effect of what physicians know to be one of the most addictive substances on the planet.
Seven years ago, Cleaves started feeling short of breath, and soon enough she was diagnosed with a disease she had never even heard of: COPD.
COPD, or chronic obstructive pulmonary disease, is the third-leading cause of death in the U.S. — yet more than one in three Americans have never heard of COPD.
And it’s hitting Tennesseans particularly hard. A study released in November 2012 by the Centers for Disease Control and Prevention found that Tennessee had the third-highest COPD rate in the country, with 8.7 percent of Tennesseans reporting that they had been diagnosed with the disease. That’s compared to 6.3 percent nationwide.
What’s worse, the number of people suffering from COPD could be even higher.
“The exact prevalence of the disease is not known, because not everybody is screened for COPD,” explains Dr. A. Stacey Headley, a pulmonologist, University of Tennessee associate professor of medicine, and co-director of the medical ICU at Methodist University Hospital in Memphis.
COPD is the name for a group of lung diseases in which the lungs’ air sacs or airways become inflamed or clogged with mucus, and eventually lose their elasticity or suffer irreversible damage. It’s also linked with higher rates of heart disease, diabetes, hypertension, lung cancer, and bone disease. Chronic bronchitis or emphysema are common manifestations of COPD.
Cleaves’ mother had emphysema and was on oxygen therapy before she died at age 81. Today, at age 57, Cleaves is on oxygen, too.
“I used to ask her why she’d be breathing that way,” Cleaves remembers. “I understand everything now: trying to breathe. Trying to breathe.”
These days, Cleaves is barely able to get out of bed. Even walking to answer her front door can leave her gasping for breath.
“It’s an awful way to live. I depend on somebody to do everything for me,” she says. “I was born January the 19th, 1956, and they’ve given me two years to live.”
Tennessee on Fire
If you smoke, you’re at risk for COPD — period.
“Probably 95 to 99 percent of COPD is from cigarette smoking,” says Dr. Karen C. Johnson, interim chair of the Department of Preventive Medicine at the University of Tennessee Health Science Center.
In Tennessee, 23 percent of adults smoke, compared to 19.3 percent nationwide. The consequences of this are already clear: Tennessee’s smoking-related mortality rate is sixth-highest in the country (behind only Kentucky, West Virginia, Nevada, Mississippi, and Oklahoma) according to the CDC. And we see few signs of improvement: While smoking rates declined 15 percent nationwide between 1996 and 2007, Tennessee’s smoking rate held steady — and the percentage of deaths attributed to chronic lower respiratory diseases increased.
Around 300 people in Shelby County die every year of chronic lower respiratory diseases such as those commonly associated with COPD — and this number doesn’t include those whose COPD led to heart disease or other conditions.
But Shelby County is better off than most. It ranks 72nd out of the state’s 95 counties for deaths from lower respiratory diseases. Macon County, at No. 1, has a mortality rate more than four times higher than Shelby County’s.
Helen Cleaves grew up in Shelby County, along U.S. 64, with two parents who smoked. By age 12, her friends were smoking cigarettes and so was she.
Today, 21.6 percent of young people in Tennessee smoke, and Sheila Harrell, who runs a smoking cessation class at the Church Health Center in Memphis, says this is partly due to a culture that encourages smoking — or at least, doesn’t discourage it.
“Just from the stories that people have told me, they started sneaking cigarettes from their parents or grandparents,” explains Harrell. “I’ve actually heard people say, ‘My aunt would have me light her cigarette and take it to her.’ And they always hated smoking, hated smoking, hated smoking, but at some point in time they turned to it.”
Something in the Air
Smoking isn’t the only culprit. Air pollution is another big contributor to COPD. In fact, on a worldwide scale, exposure to wood smoke is the number-one cause of COPD. This is one reason parts of rural Appalachia, where wood stoves are more commonly used for heating and cooking, have such high COPD rates.
For those who already have COPD, Headley says air pollution can lead to “exacerbations” — incidents when an individual’s lung function is so poor he or she may need to be hospitalized.
And when it comes to air pollution, Tennessee lies at the southern border of the nation’s largest hotspot for PM2.5 — a particularly harmful type of tiny airborne particle. Wind patterns push polluted air from areas as far as the Northeastern U.S. to gather in the Midwest.
The CDC found that states along the Ohio and lower Mississippi Rivers have the highest rates of COPD. Many of these have some of the country’s highest smoking rates — but many are also in this cloud of PM2.5. Occupations that involve high exposure to dust or particles, including farming, coal mining, and some manufacturing jobs, can also put people at risk for COPD.
The Legalities of Prevention
After talking for 20 minutes, Helen Cleaves is exhausted, short of breath. But you can hear the frustration in her voice when she describes a recent visit to the hospital: “All they could do when I came to the hospital is just make me comfortable,” she says. “Nothing else.”
Exercise, smoking cessation, medication to ease the symptoms — these are the treatments for COPD. There is no cure.
That’s why when Memphis physicians talk about fighting COPD, they talk about prevention — in particular, the battle against smoking.
In 2007, Tennessee cracked down on secondhand smoke in workplaces. There are still loopholes: bars and restaurants whose clientele are over 21 can allow smoking, along with any workplace with four or fewer employees.
The long-term impacts of secondhand smoke can be difficult to measure, but its detrimental impacts have been proven, UT’s Johnson says.
“You can actually measure nicotine levels in my blood if I’m breathing your cigarette smoke in,” she says.
Sheila Harrell at the Church Health Center says that the smoking ban has made quitting a little easier for some people in her smoking cessation class, called Commit to Quit.
“For some people, actually, it helps them think about quitting because it’s just such a taboo,” she says.
But the 2007 law stops short of banning smoking in outdoor public spaces, and Dr. John David Williamson of Memphis says regulating smoking in such spaces may be the next step.
A fine balance must be achieved to maintain personal freedoms, Williamson warns, but “I do think there are public areas that should be more protected.”
Lower Income, Higher Risk
A big part of treating COPD effectively is stopping the disease before it progresses — and among Memphis’ lower-income populations, that’s not always easy.
“Because of the socioeconomic background of Memphis we have a large population who are in poverty and don’t get access to medical care,” Headley explains. That means that people only go to the doctor when the disease is farther along — the worst possible scenario for a disease that’s irreversible.
Williamson is resident director for the family medicine residency program at Christ Community Health Services, which has six medical centers around Memphis. Eighty-four percent of CCHS patients live at or below the poverty line. Even when patients do come in for treatment, getting a spirometry test to confirm the presence of COPD requires visiting another facility — an extra investment of time and money that many patients just can’t afford.
“For our patients it’s all about dollars,” Williamson says. “There are lots of socioeconomic barriers to getting that testing.”
And because lower-income populations tend to have higher smoking rates, the result, Williamson adds, is that “our population that has the highest risk of COPD are the very populations that have the most problems with access to primary care.”
Williamson recommends that anyone trying to quit smoking should pair up with a healthcare professional to guide them. But community health centers like CCHS are often booked to capacity, so that scheduling an appointment can be difficult. Someone with health insurance could simply try another doctor. For the 40 percent of CCHS’ patients who are uninsured, however, that’s just not an option.
The Science of Quitting
Quitting isn’t just about access to the right resources — it’s about overcoming the allure of a powerful drug, day in and day out.
“Nicotine in cigarettes is very addictive. It may be as addictive as cocaine. It’s certainly more addictive than alcohol,” Johnson says.
It’s important to recognize the practicalities of nicotine addiction if you’re going to help smokers quit, and that’s the focus of her research at the University of Tennessee.
At UTCHS, Johnson is about nine months into a National Institutes of Health-funded study called TARGIT, testing an iPod Touch app that provides the same behavioral support for quitting as in-person therapies. The app helps users set a quit date, plan how to deal with urges, and find resources for smoking cessation.
An app similar to that being used in the study, called Quit Forever, is already available on iTunes.
Such an app could be particularly helpful in Memphis, where Harrell says education and support about smoking cessation are sometimes hard to come by. But swapping stories with other people who are trying to quit is also a strong motivator.
“There’s a lot of resources online, but actually being able to come to a class and say out loud, ‘I’m quitting,’ or ‘I’m going to quit next Tuesday’ — it puts the pressure on,” she explains.
Struggle and Hope
Patients are affected very differently by COPD depending on how soon — or how late — the disease was caught, and whether the patient changed his or her behaviors. The difficult truth, however, is that lung function that is lost is never recovered. For Helen Cleaves, a grandmother of 12, the impact has been difficult to bear.
“I used to be so vibrant. I used to do all the running for the family, pay the bills, babysit, all that type of stuff. I can’t do it anymore,” she says.
But Johnson insists that no COPD patient is past hope for a better life.
“At any point in your lung function, if you stop smoking, it will slow your rate of decline,” Johnson says, “so even if you have COPD, it’s not too late to stop.”
The key to success, as it turns out, comes down to that old adage: If at first you don’t succeed, try, try again.
“If you have a slip or if you have a slight relapse, don’t be discouraged,” Johnson says. “Start over, because the more times you try to quit, the more likely you are to quit.”
Erin L. McCoy, a Louisville native, is a Seattle-based freelancer specializing in science, education, travel, and environmental journalism. Read more of her work at erinlmccoy.com or follow her on Twitter @erinlmccoy.