Seen from above, the Appalachian Mountains jut from the earth like a spine curving through the eastern U.S., reaching north into Canada and south into Mississippi. For most Americans, this lush region conjures the strum of a banjo, the songs of Loretta Lynn and the gentle twang of a thick mountain accent. A closer listen reveals other, more disconcerting noises: the raspy voices, heavy wheezing and sighs of resignation that so frequently accompany a diagnosis of lung cancer.
One of those voices belongs to Charles McKinster. He and his wife live outside the small town of Louisa, Kentucky, in Spencer Branch; it's a hollow ("holler" in the local dialect), the term for the creek-bottomed central Appalachian valleys where family clans have lived since Scottish and Irish settlers first arrived in the region in the 1700s. Born a few miles away, McKinster has never left eastern Kentucky aside from some childhood years in Columbus, Ohio, and his drafted service in the Vietnam War. The noises of the coal mines scared him—he had "rabbit blood," as he puts it—so instead of toiling in the region's most important industry, he found steady work as a school bus mechanic. But after about 15 years, severe back pain from crushed vertebrae forced him into early retirement and disability payments. A pack-a-day smoker since he was 10 years old, he began seeing a pulmonologist four years ago because of breathing troubles. In February 2015, he was diagnosed with advanced lung cancer.
By June, McKinster had completed several rounds of chemotherapy and was about to start seven weeks of radiation treatment. His wife, who suffers from heart problems, lupus and fibromyalgia, is also unable to work, so the couple lives off their social security payments and small commission from a gas well installed on their land decades ago—totaling about $1,300 monthly—as well as food stamps. They have Medicaid coverage, but McKinster worries that the gas well earnings may inch their monthly income up too high to keep them qualified. In any case, if money ever runs out after paying for the essentials, "I'll have to stop the treatments," he says. He eats squirrels and groundhogs he shoots from his porch and skins himself because their budget is so tight. Although he understands his disease could go into remission, McKinster, 68, whose brother died five years ago of lung cancer at 72, has a glum outlook. "I'm an old man," he says. "Let's be honest about it."
Every hollow bears such stories. Kentucky has more cancer than any other state in the country. It has the highest rates of lung cancer and colorectal cancer—incidence and death—in the U.S. Several other cancers, including cervical, also occur at disproportionately high rates. The cases are heavily concentrated in the Appalachian counties and are accompanied by high instances of poverty and low educational attainment. The central Appalachian areas of West Virginia and Virginia are similarly plagued by malignancies.
Cancer in central Appalachia is itself like an invasive tumor, and restoring health to the region means excising a tangled knot of issues with roots that extend far beyond the mountain range and into the very heart and soul of America.
Poverty Is a Carcinogen
Kentucky is the 45th poorest state in the country, with 18.8 percent of the population living below the federal poverty guidelines. Lower levels of education attainment often accompany poverty, and Kentucky has the third lowest percentage of people who have completed high school.
Escaping this poverty can be nearly impossible. When Angela McGuire, who works with Kentucky Homeplace, part of the University of Kentucky's Center for Excellence in Rural Health, makes home visits to ensure clients are following treatment recommendations, she frequently has to assist them with basic life needs. Steven Peterson, a 51-year-old southeastern Kentuckian, started smoking at age 7. Today, he is blind in one eye from an accident nearly 30 years ago, has suffered two heart attacks (he quit tobacco after the first, seven years ago) and myriad other health issues, and now supports his family on disability payments of $743 per month after insurance costs. McGuire recalls a recent phone message she received from Peterson saying, "I'm so embarrassed, but I need food." Unable to purchase basic appliances, the family rents them instead, and that consumes every spare dollar. "There's no way they can get out of it," says McGuire.
"Poverty is a carcinogen," former National Cancer Institute Director Samuel Broder said in 1989. Cancer rates are frequently higher where poverty is most concentrated, and eastern Kentucky is a case in point. Lung and bronchial cancers are diagnosed in about 98 of every 100,000 people annually in Kentucky, compared with an average of 59 per 100,000 nationwide. The trend persists across several other cancer types, leading to an annual cancer incidence in Kentucky of 513 per 100,000 people per year, far higher than the national average of 455 per 100,000. "There's not a family in eastern Kentucky that has not been touched by cancer," says Tom Collins, a native of the region who directs projects with the Rural Cancer Prevention Center (RCPC), also part of the University of Kentucky.
Cigarettes play a huge role in this. Both poverty and low educational attainment are associated with smoking. Among the U.S. population with an annual income of less than $15,000, an estimated 33 percent are smokers; in Kentucky, that rate is about 48 percent. People who drop out of high school in Kentucky are also more likely to smoke than high school dropouts as a whole: 45 percent versus 33 percent. Smoking rates fall as income and educational attainment rise across the U.S., but in Kentucky the numbers at the bottom levels are disproportionately greater.
But smoking doesn't account for all this devastation. Empty bank accounts cause much more fundamental problems; many people in Kentucky can't even make it to a health clinic when they are sick. "They don't have the gas money," says McGuire. Medicaid provides transportation but not to people with a registered vehicle, "even if it's on blocks in your driveway," says McGuire, who has many clients with dirt floors in their kitchens.
Even those who do make it to the clinic often do not understand what they're told. McGuire has clients with diabetes who were unaware of the dangers of skipping a meal when she first met them. Many people she knows with cancer do not believe treatment can help. To them, doctors speak what amounts to a foreign language. When Peterson had his first heart attack, he couldn't understand what the doctors and nurses were telling him. "Those fancy doctor words, I don't know what they are," he says. "I just tell them, come out and tell me in my words."
Blowing Up the Top of Mountains
Then there's a problem unique to Appalachia that might be driving up cancer rates in the region: coal mining.
The coal extraction business has a been a fundamental part of central Appalachian life for decades. Although many mines have closed recently, the industry still thrives. In 2013, more than 127 million tons of coal were extracted from 248 underground and 277 surface mines in central Appalachia, and the industry earned about $46 billion in revenue in 2014.
The long-standing concerns over the impact of the mines on the environment and human health have intensified in recent years with the advent of mountaintop mining. Begun in the 1970s, MTM, also called surface mining, escalated in the 1990s as a cheaper way to access the energy-rich bituminous coal beds lying beneath the Appalachian mountain forests. After a forest is cleared, explosives are used to blast away mountain peaks to expose seams of coal within. Debris from the blasts is deposited in the nearby valleys. Seen from above, MTM looks like brown rash splotches on a green body.
MTM is incredibly efficient. It also may be making people sick. A study of 403 counties in central Appalachia found that those with MTM have higher rates of cancers of the colon, liver, lung and cervix, as well as leukemia, compared with counties without mining. Cancer-related deaths were also more common in the MTM counties.
The mechanism connecting MTM to cancer is likely the release of carcinogens into the environment. A U.S. Geological Survey investigation of MTM regions in central Appalachia found high levels of aluminum and silica—two known carcinogens—in air samples from the region. The study also found traces of chromium, sulfate, selenium and magnesium in the air; research shows that these components of granite rock may be directly carcinogenic or may elevate the risk of cancer through respiratory damage. As Bill Orem, one of the USGS researchers involved in the work, notes, the findings were "what you would expect, since you're blowing up the top of a mountain." Another study found elevated levels of arsenic, also carcinogenic, in toenail samples from residents of Appalachian Kentucky.
In one recent study, human lung cells in a lab were exposed to particulates found in air samples within a mile of an MTM in West Virginia. After three months of exposure—what would translate to about eight and a half years of breathing in body-bound lung cells—they started to act like cancer cells, dividing more rapidly than normal. The same wasn't true for an accompanying group of cells exposed to air from another rural area in West Virginia not near a surface mine. "I can't definitely say yes, mountaintop removal causes lung cancer," says Indiana University public health professor Michael Hendryx, co-author of this 2014 study, published in Environmental Science and Technology, "but I believe that it does, based on the whole body of evidence."
Smoking increases lung cancer risk by up to 14 times—not enough to account for all the cases in the region. "It's not that smoking is not an issue," says Tom Tucker, an epidemiologist at the University of Kentucky and head of the Kentucky Cancer Registry. "It's just that there's something else going on along with it." The most likely explanation is that many carcinogens are mixing together: adding radon or asbestos to smoking pushes the risk up to 300 times higher than normal, and Tucker thinks the same is likely true for arsenic and chromium.
Coal mine economics may be increasing cancer risk and exacerbating the region's poverty. Wages for employees are typically high but the jobs are few, accounting for about 1 percent of all employment in Kentucky. Surface mines require less manpower, leading to a reduction in jobs, and the destruction of the landscape may be keeping other businesses away. Federal and state subsidies to the industry amount to billions of dollars. In 2008, Kentuckians paid on average more than $100 per month in taxes to the coal industry. Recent reports indicate the industry costs more than it earns and is mining beyond current demand, driving prices down. "The area needs to diversify and get away from coal as rapidly as possible if it wants to create a stronger economy," says Hendryx.
But it won't be easy to kill off the mining industry. Americans use more than 900 million tons of coal per year; it accounts for about 37 percent of all electric power fuel in the country. The way we use electricity—every light switch, every phone charger—has turned central Appalachia into a "sacrifice zone," a term coined to describe Cold War nuclear fallout regions in the Soviet Union that has come to refer to areas where residents become victims of the pollution caused by an outside demand for their resources. "Mining communities are America's sacrifice zone," says Hendryx. Although recent reports indicate a decline in mountaintop mining, the damage already done has deeply scarred the land and its people.
Reaching People Where They Are
Local efforts to heal Appalachia are growing. Kate Eddens, who researches health behavior at the University of Kentucky, is developing touch-screen software for tablets that provides health information and collects data using visualizations and simple terms. "When you're expecting someone to read who can't read, how are you going to reach that person?" asks Eddens. Tablets and smartphones might be the answer: The 2013 U.S. census shows that even among households where income is less than $25,000 a year, 40 percent have handheld computers. And across Kentucky, 75 percent of people live in a home with high-speed Internet. These devices can incorporate images, sound and video to help get messages across to those with substandard reading skills. For example, Edden hopes to create text-to-speech software in which health information can be provided in any regional accent or dialect, so that the user hears a familiar voice. Other researchers are focusing on "faith-placed" interventions, such as instituting smoking cessation and other programs at rural churches.
Smart clinical interventions may also thwart the epidemic. High mortality rates in the region indicate that cancer is only being diagnosed in its later stages, and early diagnosis is especially critical for colorectal and cervical cancer. The more advanced the cancer, the harder it is to treat, because the harmful cells have already burrowed deep in the body, multiplied beyond control or mutated into forms beyond the reach of current medications.
Colorectal cancer screening is recommended for everyone starting at age 50, and earlier for anyone with a family history. But many central Appalachians are reluctant to have a colonoscopy or other tests because taking time away from work is a hardship. That resistance is compounded by a lack of understanding about preventive medicine. McGuire frequently encounters clients who have not followed through on a doctor's recommendation to have a mammogram or colonoscopy because they don't have any pain. "You don't want to wait until there's pain," she tells them. "Well, if it doesn't hurt, why do it?" they ask.
To overcome these barriers, Collins and others at the RCPC are pushing fecal immunochemical testing, an at-home method to find early warning signs of cancer. Cheap and simple, an annual FIT test can serve as the basis for determining whether the more invasive and costly colonoscopy is warranted. "If we are proactive and we get people to take a yearly test for colorectal cancer, dying from it is not even a possibility," says Richard Crosby, director of RCPC, which also just completed a five-year campaign to encourage parents to have their children vaccinated for human papillomavirus, the underlying cause of most cases of cervical cancer.
But all these efforts are part of an uphill battle. A long history of poverty and disease in the region has led to a sense of resignation, a fatalistic belief about the inevitability of cancer and the death it brings. "Some of them are very despairing because every member of their family has had cancer, and they just knew it was going to happen to them," says Susanne Arnold, who treats lung cancer patients at the University of Kentucky Markey Cancer Center. Many people who are diagnosed refuse treatment because they don't see the point of going through the pain. "They accept it and go on," says McGuire. "That's kind of the mentality of the elder generation here."
The hope, of course, is to change that fatalistic attitude. In the meantime, those involved in treatment and prevention are doing what they can to help. "It's such a terrible burden that this community bears in cancer disparity," says Arnold, an eighth-generation Kentuckian who stayed in the region because of the desperate need for medical care. With several studies under way to measure carcinogen levels among locals, gauge the benefits of routine screening and determine the efficacy of advance treatment, she says plenty of work remains to improve the desperate situation. The key, though, is "to try to give people hope," she says. "That is why we're here."
Follow Jessica Wapner on Twitter @jessicawapner
This article is one in a series from Newsweek 's 2015 Cancer issue, exploring challenges and innovations in cancer treatment and research. The complete issue is available online and at newsstands.
Correction: This article previously incorrectly stated that in 2013, more than 127,000 tons of coal were extraced from mines in central Appalachia. Actually, over 127 million tons of coal were extracted in that year.
