The Cancer Capital of America
Kentucky has the unfortunate distinction of being No. 1 in incidence and mortality rates of cancer per capita in the United States, and the eastern part of it faces significantly higher rates of mortality and morbidity, due to heart and lung disease, diabetes, and cancer, than the rest of the state and country. Because of that, the region, of which the population is less than 15 percent of the entire state, has become a microcosm of the vast gulf between the critical importance of preventative care and the myriad factors that might prevent vulnerable populations from seeking it, leading to unnecessary pain, distress, and untimely deaths, even as medical treatments become more advanced and insurance more available.
To understand the region’s health disparities, one must understand its landscape. Traffic on single-lane roads that snake through hills often sits at a standstill, making space for cranes and backhoes that are working to expand the highway. Despite these literal road blocks, something remarkable is happening in Eastern Kentucky. Public health and policy experts from the University of Kentucky are adapting to the region’s structural and historical constraints by building a new system of public health and prevention — one in which care is brought directly to patients. All of this has led to an increase in health screenings and a decrease in cancer-related deaths.
The city of Hazard, nestled into the heart of Appalachia about 200 miles from Louisville, is home to several health and medical centers operated by the University of Kentucky and Appalachian Regional Health (ARH). These facilities make up the city’s largest employers, growing its bedtime population of 5,000 to 25,000 daily. The density of health care facilities in this remote region is intentional. Although cancer mortality rates are declining nationally, rural areas are not experiencing the same results as urban populations. In 2017, the Centers for Disease Control (CDC) reported that “[w]hile rural areas have lower incidence of cancer than urban areas, they have higher cancer death rates. The differences in death rates between rural and urban areas are increasing over time.”
Health disparities between rural and urban populations are not a new phenomenon, and they highlight the socio-economic divide between the two such regions. Counties in Eastern Kentucky are some of the poorest in the country, with median annual incomes between $19,000 and $24,500. The region lacks infrastructure, like highways, reliable transportation, and, in some cases, paved roads, to support a more robust economy — an isolation that also explains a frustration with “outsiders,” and unique elements of the population’s genetics.
The families living in Eastern Kentucky span generations, Tom Collins, the associate director of the University of Kentucky Rural Cancer Prevention Center, explained to me; as a result, there is a high incidence of inherited cancers. The population is highly susceptible to colorectal cancer and Lynch syndrome, an inherited trait that predisposes carriers to significantly higher risk of colon cancer when compared to the general population.
Genetic predispositions, limited access to care, and reduced income alone would increase anyone’s risk of cancer, but when combined, Eastern Kentuckians are at highest possible risk of disease.
According to Collins, the commingling of families who have been in Eastern Kentucky for generations has “intensified” the prevalence and effect of the condition. A study conducted by Dr. Uday Shankar, a gastroenterologist at ARH Cancer Center in Hazard, supports Collins’s conclusion that Lynch Syndrome is one explanation for the rate of colorectal cancer in young people in the area. Genetic predispositions, limited access to care, and reduced income alone would increase anyone’s risk of cancer, but when combined, Eastern Kentuckians are at highest possible risk of disease.
One of the biggest reasons for the staggeringly high cancer rates in Kentucky is not poor treatment, but rather the stage at which cancer is typically detected. “If we’re not screening the populations adequately, we can’t get them to treatment or find the disease in time,” said Dr. Tom Tucker, who leads CDC and NIC-research at the University of Kentucky Markey Cancer Control Program. “We find it at an advanced state when our treatments don’t really have an impact.”
For colorectal cancer the best screening tool available is a colonoscopy, which can detect asymptomatic, precancerous lesions and remove them. The American Cancer Society recommends a person of average risk should begin colorectal screenings at age 45 and every 10 years thereafter. However, 45 is much too late for a high-risk population like Appalachia. According to Collins, “[i]f you have a first degree relative (parent or sibling) that has been diagnosed with colorectal cancer, you should start screening at 10 years younger than the age at which that relative was diagnosed, even if it is younger than 45.”
Irrespective of age, Eastern Kentuckians are not undergoing colorectal screenings as frequently as they should, despite only 7.3 percent of the state’s population going uninsured, as of 2016 — less than the national average of 9.6 percent. Of the 1,559 people who utilized services through Kentucky Homeplace between October and December 2018, only 201 reported being uninsured.
This indicates that the problem, for many, is not the cost of the screening itself. Health insurance means little to the dozens of counties in the region lacking a health clinic or, in some cases, even a grocery store. People living in these areas are without reliable transportation and only go into town once a month. Poor infrastructure, like single lane highways, make for a time-consuming journey to one of Hazard’s medical centers, or 70 miles farther east to the hospital in Pikeville. Cancer screenings are not a priority.
Although public-health projects are improving rural Kentucky’s screening access, fatalism still plays a significant role in both late-stage diagnoses and aversion to preventative screenings. In our conversation, Collins highlighted a well-documented trend that is a point of focus for the cancer prevention programs both UK Rural Cancer Prevention Center and Kentucky Homeplace. “You have individuals who seem perfectly healthy going in for a colonoscopy. They find cancer, there’s a surgery to remove the cancer, and then the person dies. So one story like that transfers through a small community,” he said. What these stories fail to capture is the late stage of the cancer found during the colonoscopy and that, in many cases, no number of surgeries or radiation and chemotherapy treatments could have cured that person.
According to Tucker, the Kentucky Cancer Registry monitored efforts of the Kentucky Cancer Consortium to increase colorectal screenings. Over a 17-year period beginning in 2000, they found the KCC program lead to a 25 percent drop in the state’s incidence rate of colorectal cancer and a 30 percent drop in mortality — a dramatic impact no other state has seen.
Paul Campbell is a veteran detective of the Hazard Police Department and a survivor of stage four colorectal cancer. He was waiting for me at the entrance of the police station on a recent Friday morning. I stumbled in from the downpour, water pooling at my feet as I fixed my gaze upward on Campbell, who towered above me at well over six feet tall and was dressed in full uniform. Although intimidating at first glance, Campbell dispels any trepidation he might cause as soon as he opens his mouth. He’s warm and talks frequently of his wife Gracie — his “better half” — and his faith.
Campbell’s kindness shouldn’t have surprised me; it was only the day before that he received a text from me, a complete stranger, asking to talk about the darkest period of his life: when, in 2014, he was given a fatal diagnosis of colorectal cancer at the age of 32. How could this robust-seeming man be the same person who was given just months to live?
The story of Campbell’s diagnosis begins as all of his stories do: with his wife by his side. The two were out, on their way to the grocery store when Campbell, now 36, began feeling ill and told his wife to leave him in the car while she shopped, a rarity for the inseparable pair. By the time she returned to the car, Campbell was running a fever and his “body was screaming something is really wrong,” he told me. Groceries still in the car, Campbell’s wife drove him to the emergency room.
Paul Campbell and family.
Because of his age and the location of his pain, doctors assumed his symptoms were appendicitis and admitted Campbell to the hospital overnight for observation, a CT scan, and, later, surgery. However, before cutting him open, the surgeon ordered a colonoscopy and another CT scan — this time with contrast for a better picture — and found a tumor of the sigmoid, or pelvic, colon. Campbell was diagnosed with stage four colorectal cancer.
Campbell recalled one of the doctors saying, “Well you’re young… and it shouldn’t be what it might be.” His age confounded the doctors as did his otherwise healthy appearance. Incidence of colon cancer, however, significantly increased among young adults between 1995 and 2014; Kentucky has one of the highest rates of colon cancer in the country.
I asked Campbell if he had any symptoms prior to his diagnosis. In 2006, after noticing blood in his stool, Campbell went to the emergency department. According to the physician he saw in the ER, his gastrointestinal problems were caused by stress; Campbell had been [working feverishly,] taking Microsoft certification courses as part of his computer science degree. He told Campbell there was no need for a colonoscopy because he was much too young to have cancer. “If I had those symptoms today, a colonoscopy would have been done without question,” Campbell said. He now believes those symptoms were likely due to a polyp — a benign growth considered to be precancerous; the removal of which can prevent the disease from forming.
Campbell’s diagnosis dramatically shortened his life expectancy; he was told he had six months to live.
Campbell’s diagnosis dramatically shortened his life expectancy; he was told he had six months to live. He got his affairs in order and pressed on with the recommended course of treatment. As a police officer, he said, “I’ve got to participate in other people’s nightmares on a very regular basis. So I’m not accustomed to being a victim… to being the one whose having the nightmare.”
What followed were multiple surgeries broken up by 12 rounds of chemotherapy. During his first operation, performed at a hospital more than 100 miles from Hazard, a surgeon removed a foot-long section of his colon as well as half of his rectum and created a temporary ileostomy, which connected the remaining portion of his colon to a colostomy bag. Campbell told the doctor to place the ileostomy high enough so he could still wear a gun belt at work.
Campbell remained in the hospital for about a week. “I encouraged [my wife] not to come. I didn’t want the kids to remember this,” he said. Nevertheless, his wife made the four-hour round trip several times during his stay. “After my initial diagnosis, my uncle called and said ‘I’ve got two tickets for you and your wife to come to Phoenix and you are going to Cancer Center of America… because they’re the best.’ And I told him no.” If Campbell was going to do this, he was going to do it at home.
Undergoing treatment hundreds of miles from home could have increased the financial burden Campbell and his wife already faced. They relied entirely on his income, so he needed to maintain employment with the Hazard Police Department to stay afloat and keep his insurance coverage. So, during his weeks off from chemotherapy, Campbell reported for duty. To help him get through the first year of surgery, medication, and copay, the town raised $26,000. He was stunned. “That’s a lot of money for people locally to pull out of their pocket for somebody,” he said. Even people Campbell had arrested and indicted were stopping him in the street offering hugs and prayers.
The cost of care — even with insurance — is a familiar burden in Eastern Kentucky. Erica*, a 53-year old mother of three and former medical assistant, was diagnosed with colorectal cancer in 2013. After her first surgery — a bowel resection that led to an infection — she spent a month at the same distant hospital as Campbell. It was the longest four weeks of her life, she told me. Her husband, a self-employed mechanic, closed his shop and stayed at a nearby motel to remain close while she recovered. She tested negative for Lynch syndrome and, like Campbell, a series of inconclusive tests were performed prior to her stage two diagnosis.
“Looking back now I can see a few things that went on that I didn’t recognize,” she said, referring to health indicators. It wasn’t until she started feeling pain in her rear and blood appeared in her stool months later that she sought more testing. “Maybe when I was feeling so tired I could’ve come in and had a better workup but I just thought it was… anemia and all that, like having kids, working.”
Erica lives 25 miles outside of Hazard in a town called Red Fox. “We don’t even have a store,” she said. For each of her 26 chemotherapy treatments and follow-up scans, her husband drove her to and from the cancer center in Hazard. Although it was the same route she drove to work for 20 years, making the trip while nauseated from chemo took its toll.
A nursing supervisor at ARH hospital half-joked that the region’s older generation would rather close a deep wound with duct tape than make the trip to the emergency department.
Joey McKinney, a nursing supervisor at ARH hospital and local business owner, half-joked that the region’s older generation would rather close a deep wound with duct tape than make the trip to the emergency department. Doctors, many of whom are doing residencies before they might move on to new hospitals after a few years, don’t speak the local dialect,” and patients can feel they’re being talked down to. Campbell characterized one of his surgeons, Dr. Ching-Wei Tzeng, as ”the first person who I would consider highly intelligent who could relate to an old hillbilly’s jokes.”
While the University of Kentucky recruits top talent to staff its hospitals and offers loan forgiveness to medical students willing to complete at least part of their residencies in Hazard, their tenure in the region is short-lived. “[The medical director] recruits a lot of these physicians and once their contract is up, they’re gone again,” said Derrick Hall, the Hazard city manager who is also a part-time paramedic.
Trust, loyalty, knowledge and regard for a patient’s feelings are four critical elements in positive patient outcomes, according to a 2015 journal article in the Primary Care Companion for CNS Disorders. In Eastern Kentucky, these elements are broken by people who, according to Campbell, and confirmed by a number of Hazard residents and healthcare employees, come to the area to “slum it” or because it looks good on their resume. “They take advantage of Eastern Kentuckians. We’ve been taken advantage of for decades upon decades.”
“By doctors?” I asked.
“Anyone and everyone,” he quickly replied.
People and corporations have exploited the region for personal gain, and very little of that money is reinvested in Appalachia. Hall noted the majority of taxes on coal from the region get redistributed to the cities like Lexington and Louisville.
Mace Baker, the director of Kentucky Homeplace, is working to build more trust between health care workers and the community. Unlike physicians who rotate through Eastern Kentucky, Kentucky Homeplace community health workers were often raised in the county they now work in. The community health workers provide medical, as well as social and environmental, services to create a bridge between patients and “foreign” (meaning anyone outside Appalachia) doctors.
Homeplace survives on grants from the state government, WellCare Health Plans, and support from UK to administer courses in diabetes and chronic disease self-management, free of charge, to residents in their service area. Each course is six in-person sessions; to promote attendance, Homeplace partnered with WellCare to provide each attendee with a $10 gift card to Walmart for every session, up to $60 total. Homeplace CHWs also help dispense Fit Kits, an alternative home-screening device for colorectal cancer that detects blood or cells from polyps, and is less expensive and invasive than a colonoscopy.
Apart from Homeplace, free educational opportunities are offered to the public through Hazard’s medical facilities. While in Hazard, I attended one of these programs — a lunch and learn focused on lung cancer treatment — during which participants were invited to use a Smokerlyzer, which “instantly and non-invasively measures the amount of carbon monoxide” on someone’s breath and have their blood pressure checked. Depending on the outcomes of these tests, people might be referred to doctors for further testing.
Even with the free testing and ARH-branded gifts, most attendees sat to the side, picking over their chicken salad and chatting with their table-mates. “A man brought me [to Hazard],” quipped an especially lively, older woman, when I asked if she was native to the area. “I had three of them and they’re all dead. Cancer. They wouldn’t take care of themselves.”