Just over a year ago, Natasha Lucas, an agent for the University of Kentucky’s Owsley County Extension Office, needed a local lung cancer survivor to speak at a popular annual cancer awareness event in Booneville, Kentucky. But she had a devil of a time finding one. It took weeks to track someone down, but as sad as that was, it wasn’t surprising. When it comes to lung cancer, Lucas said matter-of-factly, “there are just very few survivors.”

Located along the Kentucky River on the western side of the Appalachian Mountains, Owsley County had one of the highest percentage increases of cancer mortality per capita in the U.S. from 1980 to 2014, according to a recent study in the Journal of the American Medical Association. Deaths per 100,000 people went up 45.6 percent. But this small, rural county provides just a snapshot of the larger cancer epidemic in Appalachia. According to new research out of the University of Virginia, cancer incidence has declined in much of the country since 1969 — but not in rural Appalachia. In rural Appalachian Kentucky, the cancer mortality rate is 36 percent higher than it is for urban, non-Appalachian people in the rest of the country; in rural Appalachian Virginia it is 15 percent higher; in those areas of West Virginia, 19 percent. People in much of rural Appalachia are more likely to die within three to five years of their diagnoses than those in both urban Appalachian areas and urban areas across the U.S.

The Appalachian region technically comprises all or part of 13 states, according to the Appalachian Regional Commission: Alabama, Georgia, Kentucky, Maryland, Mississippi, New York, North Carolina, Ohio, Pennsylvania, South Carolina, Tennessee, Virginia and West Virginia. However, cancer clusters are often concentrated in the center, or the heart of Appalachia: southwestern Virginia, eastern Kentucky and southern West Virginia. Researchers say the extraordinarily high cancer rates are the result of a perfect storm of unfortunate circumstances. “On the surface, it’s lifestyle factors,” said Nengliang Yao, who led the Virginia study. But there are also economic, social and environmental factors, he said. “There are layers of risk for people to die early from cancer.”

Although people outside of Appalachia may not know about the region’s cancer crisis, researchers and community organizations in the region have been studying and fighting cancer for decades, focusing efforts on four cancers with the highest incidence and mortality rates: lung, colorectal, cervical and breast. Unhealthy lifestyle factors undoubtedly contribute to these numbers. About 42 percent of Owsley County adults smoke, compared with about 26 percent of adults in Kentucky and 15 percent in the U.S. overall. More than 34 percent of adults in Kentucky are obese, and nearly 70 percent are overweight.

Another risk factor is pollution from strip mining and underground coal mining, though the link between environmental contaminants and cancer is less clear. Owsley County ceased commercial coal production in 2012, but according to the county, there is still funding for some smaller-scale coal production. In addition, some residents travel to nearby counties for jobs; there are still mines in operation in Breathitt County, as well as Harlan and Pike counties, which are farther east. All three of these counties are hot spots for cancer as well, according to the JAMA study.

Research out of West Virginia University has shown that mortality rates and chronic illnesses were higher in coal-producing counties, and a study comparing two West Virginia counties showed that cancer rates were 5 percentage points higher in a county with surface mining than in one without. The risk for lung cancer among coal miners who spend time underground or on strip mining operations in Appalachia is also higher. Carcinogens such as asbestos, radon, chromium and arsenic have been discovered at mining sites, in waterways and in soil in parts of Appalachia, but the source of these trace elements in people living in the area is still unknown. Environmental exposure coupled with the region’s unhealthy habits exacerbates the problem, said Thomas Tucker, associate director for cancer prevention and control at the Markey Cancer Center at the University of Kentucky. For instance, Tucker said that people who smoke are 11 to 14 times more likely to develop lung cancer compared with nonsmokers. But if they smoke and are also exposed to asbestos, their risk of developing lung cancer can be as high as 300 times that of a nonsmoker.

However, the biggest issue, experts said, is lack of access to care — whether it’s preventive screenings or cancer treatment. If one of Owsley County’s 4,600 residents needs to visit the doctor, they have three choices: the health department or two clinics. But doctors are not always available or working, and opportunities for screening vary. For instance, mammograms are only offered once a month at the clinics, and colon cancer screenings are referred out of the county, and cervical cancer screenings are done weekly at the health department and daily at the clinic, Lucas said. The three regional hospitals are at least a 30-minute drive away on narrow, curvy mountain roads. The Markey Cancer Center in Lexington is a far drive for people in rural Appalachia.

According to Yao, 15 percent to 20 percent of women who have abnormal mammograms don’t go back for any follow-up tests, partly because of reasons such as these. “There are a lot of barriers,” he said.

Susan West Marmagas, a public health associate professor at Virginia Tech, has studied cancer in Appalachian Virginia since 2009. She said that the majority of people who are diagnosed with cancer don’t get diagnosed in the state and go to hospitals such as Duke or Wake Forest in North Carolina for treatment. In Appalachia, there often aren’t options involving advanced technology or clinical trials that can result in higher survival rates. “The other issue is late diagnosis, and so the prognosis is much worse, and survivorship is much less,” Marmagas said.

Widespread poverty and lack of education make it difficult to overcome these barriers, which Appalachian counties have been battling for decades. By late 2016, there were only 3,600 coal mining jobs left in eastern Kentucky and just over 6,200 statewide, numbers not seen since the late 1800s. The tobacco industry, once thriving in Kentucky, is also gone. There’s nothing to replace these industries, so unemployment rates are some of the highest in the country. For instance, in Owsley, the rate is 9.6 percent, and median income is less than $21,000. “People don’t think a lot about their health, especially right now, with our economy,” said Ashley Teague, a regional cancer control specialist for the Kentucky Cancer Program. “They’re more worried about finding a job or can’t take time off work to get screened. It falls down on the list of priorities.”

Some of these services are now covered by health insurance under the Affordable Care Act. Kentucky leads the nation in the steepest decline of uninsured working-age adults, dropping from 21 percent in 2013 to 8 percent by 2015. In 2016, about 67 percent of people in Owsley County got health coverage through Medicaid, which covers preventive cancer screenings and helps cover rides to necessary treatment for people who can’t travel, Lucas said. Medicaid coverage also boosted rates of breast cancer screenings.

But still, cancer in Appalachia is an overwhelming, multi-pronged problem, researchers say, and communities know it. In a region that has been battling poverty for decades, studies and statistics don’t mean much when no real solutions are offered. “There’s a fatalism in Appalachia since everybody has family that has had cancer or died,” Marmagas said. “There’s a certain amount of ‘this is going to happen to me too,’ and they don’t get good answers from the health system around them.”

But that doesn’t keep people from trying. Dozens of groups in nearly every Appalachian county are working to raise awareness, traveling door to door, handing out take-home colon cancer screenings and driving women to get mammograms. Within the last two years, more than 6,000 people participated in these types of events for colon cancer awareness, hosted by the Kentucky Cancer Program, clinics, hospitals and health departments. According to the Kentucky Cancer Program, 92 percent of these partner organizations said events and materials increased screenings from 2015 to 2016.

It’s small victories such as those that keep Lucas and Teague going. They’ve both lived in Appalachia their entire lives and have watched neighbors, friends and family die of cancer. “We truly try hard to get the word out and work together to accomplish these goals, because our manpower and financial resources are low,” Lucas said. “Hopefully, the importance of prevention will resonate with the younger generation.”