PRESTONBURG, Ky. — Here in the heart of Appalachian coal mining country, where black lung disease and TB used to be major killers of men, a new epidemic is sweeping through the dogwood-dappled hollows that’s even deadlier than coal dust. The new threat is diabetes. Ads for diabetes counseling and testing clinics have replaced supermarkets as a major revenue source in local papers. Billboards urging middle-aged people to get tested appear almost everywhere there’s a straight stretch of highway.
Nationwide, diabetes affects 15 percent of all Americans; more than a quarter of all people over 65 are diabetic, while half are borderline. But in Kentucky and across the broad Appalachian region, a third of the population is believed to be diabetic, and health workers here believe that most diabetics don’t know it. Gilbert Friedell, who spent his life as a nationally known cancer specialist before founding a statewide health reform committee in Kentucky, however, rejects the conventional wisdom that diabetes prevention and care is a “health” problem.
“We used to say with cancer control in eastern Kentucky that if we were to apply what we now know about cancer, we could cut mortality by half in 10 to 15 years. The same thing is true with diabetes. We know what we have to do to prevent Type II diabetes and how to maintain a reasonable level of personal performance. We know these things. But, if we’re so smart, how come we haven’t fixed the diabetes problem? The answer is we’re still relying on individual approaches where it really requires community action and support.”
That insight led Friedell and the 25-member citizens committee that bears his name deep into the hollows of Kentucky, where strip miners have bulldozed off the tops of the mountains, and where earlier this year, a fierce tornado laid waste to thick forests of trees, blocked roadways and shredded the walls and roofs of gas stations, barns and mobile homes. That's where the Friedell Citizens Committee launched the Tri-County Diabetes Partnership, drawing together an alliance of doctors, nurses, dietitians, teachers, church people, local health departments and even USDA farm extension agents.
Just above a branch of the Big Sandy River, Lora Hamilton coordinates the Floyd County diabetes program. She guesses that 15,000 of the county’s 45,000 people are diabetic. A few weeks ago she went to the Stumbo elementary school to talk about diabetes to the eighth graders. “The first question I asked was, how many of you have diabetes in your family. Ninety percent raised their hands. They knew there was diabetes in their families.”
Hamilton wasn’t surprised. With estimates that 50 percent of the mountain population will be diabetic in a quarter-century if current trends continue, she says most people are resigned -- and believe there’s nothing they can do. “They tell me, ‘I’ve got diabetes or I’m going to get it. I’m just gonna have to live with it. My granddad lost a leg. My grandmother was on dialysis.' And what I say is, 'Well, you know you can keep that from happening by taking care of yourself.'”
Next door in neighboring Magoffin County, the USDA county home agent Brooke Jenkins-Howard provides family counseling.
“We have so many people who are diabetic. They go to the doctor and get the diagnosis and then they come to me for the practical side of things. They want to know what they can eat. They want recipes. We [in the Extension Service] have our roots in food, and people know us for that. A lot of times when you’re in the community and you have a reputation for doing these things for people you’re maybe easier to talk to than those medical folks who might be intimidating.”
Jenkins tells the story of a man who came to see her after having visited the county dietitian. The dietitian outlined appropriate food types he should eat, measured by grams of sugar and other carbohydrates and what each day’s total calorie count should be. “He took it home to his wife,” Jenkins-Howard said, “but she didn’t know how to put that information together into meal plans.” Part of the problem, as food anthropologists have long noted, is that changing diets is one of the hardest behavioral adjustments for any traditional population. More pointed is a misunderstanding of what it means to be diabetic.
“A common misperception people here have is, ‘I have diabetes; I can’t have sugar.' That’s all they focus on. We try to concentrate on carbohydrates in the context of your entire meal plan. Breads are a big thing. Sweets are big. And people still want to fry food.”
“Fried foods. Absolutely! They want that bad!” Bertie Salyers broke in. Salyers recently retired as the Magoffin County health director in order to attend to health problems, including diabetes, in her own family.
Fried beans. Fried peas. Fried corn. “Killed” lettuce and onions in which hot bacon fat is drizzled over leaf lettuce and other greens. These are staples throughout the American South -- and especially in the Appalachian region.
An equal barrier to controlling diabetes, Salyers says, is a deep-seated fatalism about both health and poverty. “They come in and say, ‘It runs in the family. I’ve known I’m going to get it. Just give me a pill.'”
Recently Jenkins and the farm extension office initiated a weekly class on the local cable television network aimed both at diet and self-examination for diabetic symptoms. “We talk about food and diet habits. We can send out written materials to go with the lessons related to diet. We talk about screening for A1c [hemoglobin blood] levels, making your own foot exams [for neuropathy] and eye care [for signs of retinitis].” The object is to encourage diabetics or borderline diabetics to look for signs of the problems that can lead to amputations and blindness; the cable-TV lessons reach about 6,000 people, or half the population of the county.
And that’s good, says former health director Bertie Salyers, except for one additional problem: “So many people do not have access to that local channel. There’s a section of our county that has totally no access, and there are different spots that have no access.” Needless to say, she adds, almost no one in the south end of the county has access to high-speed Internet to take advantage of emerging “health home” monitoring online.
That same barrier plagues rural residents throughout Appalachia -- and indeed in much of rural America -- as does lack of high-speed Internet and home-diagnosis and monitoring kits for a variety of chronic diseases. But, says Salyers, the blanket of pessimism concerning diabetes and all the complications that go with it has also kept the majority from taking advantage of the screening and counseling programs that do exist.
“The resources are here, but a very small percentage of the people take advantage of [the screening and the classes],” she said at a recent gathering of health nurses and diabetes counselors at the Hope clinic in Salyersville.
Angie Conley, a nurse and diabetic counselor at Hope, offers free classes to talk about diabetes prevention and self-management, but she says few people come, even though they know how prevalent the disease is in their families. “They’re open to anybody,” she said, shrugging her shoulders. “It’s in the newspapers. It’s on the radio. But they don’t come,” Conley says.
The reason, Conley believes, is the general attitude toward pills and illness. “You’ve got to get them at the [clinic] door,” she continued. "If you don’t, they’re not going to come back for the classes. We’ve learned that. You sit ‘em down and talk to them about diabetes and then they listen.”
One part of the reason, she and Salyers believe, is the cost. Though the Hope clinic is a FQHC (Federally Qualified Health Center), where a visit only costs $25, that’s a lot of money for most of the clinic’s clients, even if the clinic foots the bill for lab work that can cost thousands of dollars. Drugs for pre-diabetic or borderline patients who aren’t covered by Medicaid or Medicare can run another $75 to $100. Put those bills together with $4 a gallon gasoline to drive back over the ridges into town, and it’s more than they can afford.
“Our people,” she says, “have a disconnect between cause and effect, what the consequences are of what they do. Many people have been in poverty so long they’ve never practiced delayed gratification. It’s like I want it now — whether it’s a piece of pie or a new television. It doesn’t matter if I have to pay extra (on a credit card). It’s a cultural kind of thing. Any good results [from waiting] are so far out there they don’t matter. We’re so present-oriented that’s too hard to see.”
Nonetheless, nurse Kathry Hembry does see incremental progress among some patients.
“The number of people who come in [to the clinic] now versus 15 years ago is a whole lot better — the people who come in to get their eyes checked. Take the number of people in our community that’ve lost their legs due to diabetes. Ten years ago I could list you five people I knew personally; I can’t think of one right now. We are making progress; it’s just that we’re not making enough progress."
Back to the east over the big mountain ridge in Floyd County, diabetes educator Cheryl Younce is running through her standard diet class for people newly diagnosed with the disease. After an hour and a half of rundowns on carb and calorie counting — all of it aimed at illustrating how people can control diabetes -- the four clients who had showed up began to talk.
Maxine R., whose family was full of diabetics, thought she was healthy until last year, just after she turned 61. “The minute they told me I saw my mom with the needles stuck in her.” And then she went on, “I had a brother-in-law that had his legs amputated. He was sitting at the table one day eating a whole lemon pie. I remember he said, ‘Oh, my blood sugar is 900' (normal is between 70 and 100 units). Then they amputated his legs, and even so gangrene set in. Then he died. Yesterday my sister-in-law collapsed even though she was on insulin. They took her to a hospital in Lexington and told her she had to go on dialysis. She weighs 400 pounds.”
Debbie G. has known she’s been diabetic for more than 10 years. “The last five years,” she said, “my job was real stressful and the way I’d deal with it was to eat. And the thing is I can’t remember to take my medicine. I get distracted, but when you get past 60, you start to realize you could die.”
David B., who’s 39, weighed 300 pounds when he went to his doctor last year unable to sleep. He always felt thirsty and found himself going to the bathroom every hour or two. “I went to my doctor and he lectured me like I hadn’t been lectured since I was 10 years old.” In six months he lost 80 pounds, but despite that he’s still diabetic, taking oral medicine and wondering if he can drive the disease back.
Tim D., who’s “in his early 50s,” has had diabetes for 14 years and “never paid attention to sugar. One day the air conditioning went out and I was drinking two quarts of juice a day — thirsty all the time. I didn’t pay attention to my meds and now I’m a full diabetic and have had 10 [arterial] stents inserted."
Younce, the dietitian, acknowledges that far more diabetic patients could have shown up for her after-work class, but she says the public response in the Tri-County area has clearly improved. With as many as 22,000 residents either already diagnosed or borderline diabetics, and with advertisements for diabetic screening and treatment plastered everywhere, the epidemic is no longer hidden.
It’s still far from the vision Gilbert Friedell and his citizen corps hope for, but little by little, he and Bertie Salyers and the others want to believe they’ve begun to make a difference.
On the surface, argues Friedell, it’s all about nutrition, exercise and cutting overeating. “If you lose 7-8 percent of your weight and exercise strenuously 150 minutes a week, you can bring diabetes under control.” But to get there, he insists, requires real community action. “It can’t be top-down lecturing. The whole community has to be involved to bring about the difference in each individual.
“What we need is a comprehensive, coordinated health system in this country, which so far we do not have.”
These stories grew out of reporting assignments for Kaiser Health News.