Diabetes is one of the most debilitating chronic diseases, affecting over 30 million people in the U.S. Another 84 million have prediabetes, meaning their blood sugar level is elevated above the normal range but not enough to receive a diagnosis of diabetes.
In Kentucky, about 13 percent of the adult population has diabetes, according to 2017 statistics cited in the latest Kentucky Diabetes Report from the state’s Cabinet for Health and Family Services. About 10 percent of adults have been told they have prediabetes. The rates for both diabetes and prediabetes are rising in Kentucky, and the situation is urgent – because 25 percent of people with diabetes and 90 percent of people with prediabetes don’t know they have it.
With proper care and lifestyle changes, both Type 1 diabetes and the more common Type 2 can be managed. Additionally, persons diagnosed with prediabetes can make permanent lifestyle changes, like improving their diet and starting to exercise, that can either prevent diabetes or delay its onset.
In Undiagnosed: The Diabetes Epidemic, health champions around the state are reaching out to Kentuckians through churches, civic organizations, health departments, groceries, and through the internet to spread the word about preventing diabetes. The program was funded in part by a grant from the Foundation for a Healthy Kentucky.
Lions Club of Lexington/East Second Street Christian Church
“When you think about the burden of diabetes, it’s not just the number, but it’s the things that diabetes can bring with it,” says Dr. Ann Albright, PhD, RDN, director of the Division of Diabetes Translation at the Centers for Disease Control and Prevention. “Diabetes is a leading cause of amputation, blindness, and kidney failure.”
Diabetes occurs when the body produces too much blood sugar, or glucose (sugar), which normally is distributed to organ and tissue cells as a source of energy. In Type 1 diabetes, the body’s immune system attacks the production of insulin, a hormone that controls the amount of glucose in the blood. In Type 2 diabetes, the body becomes resistant to insulin. Prediabetes is a precursor to Type 2 diabetes.
According to Connie White, MD, MS, FACOG, the deputy commissioner for clinical services at the Kentucky Department of Public Health, about 90 percent of those diagnosed with diabetes will have Type 2. She says, “We’re starting to see that (diagnosis) happen earlier and earlier in younger and younger years, which is a concern.”
In Fayette Co., the Lexington Lions Club is contacting citizens of all ages through its diabetes prevention program, funded through a grant from Lions Club International and the Fayette Co. Diabetes Coalition. Its goal is to screen 3,000 people by tutoring volunteers in the community on how to administer an A1C blood screening test, which involves pricking the finger of patients and drawing a small amount of blood. The A1C test is one of the two main diagnostic tests for diabetes; it measures a person’s average blood sugar level over the past three months.
Lexington Lions Club member Pat Ryan leads the diabetes project. He was diagnosed with Type 2 diabetes in 2000, right as he retired from a teaching career. Given his family history of the disease, Ryan says his initial reaction was, “Maybe I’m trying to fight something I can’t fight.” But he changed his outlook after visiting a kidney dialysis center and then made the difficult but necessary changes to his diet and exercise plan and eventually lost a significant amount of weight.
Now, Ryan and his colleagues are taking the message of prevention out into the Bluegrass region. “We have four main target audiences that we want to hit, because of the risk factor involved: African-American community, Hispanic, elderly, and low socio-economic,” he says. “We’re going to try to not sit back and wait for them to come to us.”
If a person is tested and is diagnosed with prediabetes, the Lions Club will first advise them to schedule an appointment with their physician. They then direct the person to diabetes education classes. Lastly, they follow up. The initiative is much more than just conducting health fairs and screenings; it’s a sustained effort to reach people and stay in contact with them as they learn how to prevent or manage the disease.
Nearby in Lexington, Dr. Don Gillett, pastor at East Second Street Church, is taking a similar proactive approach to his own congregation and to those of over 1,000 other churches through his role as executive director of the Kentucky Council of Churches. Gillett offered A1C testing to his church members and took it himself, and found out he has Type 2 diabetes. The pastor immediately started making different food choices and saw his blood sugar levels drop while losing a dozen pounds. And by serving as a role model, he has opened a dialogue with his East Second Street congregation about the importance of getting screened and of making the same changes.
“If I had waited and didn’t have a physical this year and didn’t have a physical next year, then that means the diabetes could have been operating inside of me unchecked,” Gillett says. “Which means I could have renal failure, I could have eye failure, I could have issues with my feet, with my hands. So the longer it took that I did not know, the worse off I would be when I found out. Early diagnosis of anything is always better than not knowing.”
Paintsville-Johnson Co. Health Center
One of the main causes of Kentucky’s high undiagnosed diabetes and prediabetes rates is because many people in the commonwealth don’t get regular checkups and blood work from a primary care doctor. This culture of medical avoidance is common across the state, but especially so in rural areas such as Appalachia, where having a “touch of the sugar” is regarded as just a part of life by many folks, says Connie White.
“I always thought ‘touch of the sugar’ was a really interesting phrase,” she says. “Nobody really has a ‘touch of the cancer’ or a ‘touch of heart disease.’ You have a disease and you take it seriously.”
At the Paintsville-Johnson Co. Health Center in eastern Kentucky, Mary Beth Castle, health educator at the department, holds classes for persons who are in the prediabetes range. The classes follow the format of the national Diabetes Prevention Program (DPP), which is adopted by the Kentucky Cabinet for Health and Family Services/Department for Public Health. The DPP is an evidence-based, year-long program involving screening, education, and group support accredited through the Centers for Disease Control and Prevention.
Castle’s own life story serves as inspiration to the DPP participants. During a routine physical 2 ½ years ago, she was told by her physician that she had prediabetes and would eventually have Type 2 diabetes. She weighed 202 pounds at her height of 5’ 2” when she was diagnosed.
“I know that just from personal experience, a lot of people go to their doctors and they have never even heard of an A1C (test),” Castle says. “To be honest with you, when I started this program I had never heard of an A1C either. I knew what diabetes was, and I knew my father was a diabetic. I had never heard the term A1C before.”
Castle changed her diet and gradually transformed into a dedicated runner, starting out walking, then jogging, then building up to running 7-8 miles, seven days a week. She lost 81 pounds.
As part of the Paintsville-Johnson Co. DPP, participants take a community walk during the Fall Into Fitness gathering at Paintsville Lake recreation area. It’s a place to congregate, get A1C screenings, exercise, and share success stories.
Some folks have told Castle that they are afraid to get their A1C checked, because they have a feeling that they are diabetic and don’t want know for sure, putting off decisions about changing their lifestyle habits. “But we need to know,” Castle says. “Because this is something we can take care of. You can’t fix the problem if you don’t know what the problem is.”
Elizabethtown Kroger Health and Wellness
Kentucky ranks high among states utilizing the Diabetes Prevention Program, with numerous public health departments, groups, and even groceries conducting classes. One such local DPP is held at a Kroger Superstore in Elizabethtown. The DPP is sponsored by the pharmacy department and run by pharmacist Elizabeth Hudspeth, who is also a licensed diabetes educator. She launched the program with a grant from CDC.
“We have the advantage of being right in a food store setting,” Hudspeth says. “So we as we think about chronic disease prevention and management, specifically diabetes, nutrition plays such an integral role.”
As part of the nutrition focus, Kroger employees conduct taste-and-learn sessions with shoppers, educating them on making healthier food choices. Kroger also offers an app called Opt Up that promotes the same nutritional goals. Customers scan food labels and receive information about that product’s nutritional score – and then get recommendations from the app about similar items that are more nutritious.
Hudspeth says that her staff has received a lot of positive feedback from DPP participants. “These are people who have had significant weight loss who were about to be prescribed a medication for diabetes, and they came back and reported that they didn’t have to be started on that medication,” she says. “Just by making those healthy lifestyle choices they’re starting to see that benefit.”
One Kentuckian’s Story of Diabetes Prevention
Not all of the Diabetes Prevention Programs currently operating in Kentucky are conducted in an in-person format. Online courses are also available, enabling participants to sign up with a lifestyle coach and achieve their goals in a more flexible approach. Shellie Wingate, a certified lifestyle coach with DPP, is contracted through the Kentucky Employees Health Plan, one of the few insurers in Kentucky that currently covers DPP services. She says that online programs are good for people who may be uncomfortable in a group setting and are confident that they can meet the program’s goals alone, and also for people whose work schedule doesn’t give them the time to meet for classes.
Eileen Nelis of Bowling Green started taking online DPP courses with Wingate, known as “Coach Shellie,” after a routine physical discovered that Nelis’ blood glucose level placed her in the prediabetes range. Her weight had reached 215 pounds.
“I had ankle pain, I had foot pain, I definitely was feeling depressed,” Nelis says. “You pull yourself inward and you basically hide yourself.”
The online format suited Nelis, who completed daily lessons on her laptop and kept entries in what she calls her “owner’s manual.” And Coach Shellie remained accessible for advice and encouragement during the program’s duration.
“We practice a lot of different strategies in the program, and we also work on letting people know that there’s not this ‘all or nothing’ mindset,” Wingate says. “And that’s probably one of the hardest things for people to learn in the program, because most people, by the time they have reached our program have tried a diet or two. We talk about don’t focus on prevention, focus on the small steps, the doable steps.”
Nelis began riding her bike trainer and walking regularly, building up steps slowly and getting up to about 25,000 steps per day by summer 2019. She also changed her approach to food and nutrition, cutting down on portion size significantly.
Over time, Nelis reaped the benefits of the online DPP course. She lost over 60 pounds, boosted her energy level, and achieved better mental health. Now, she’s encouraging her family to adopt her new lifestyle habits, especially regarding food choices and portion sizes.
“Really from the very start, I felt like an emotional weight had been lifted off me as well as a physical weight,” she says.
Studio Discussion: A Path Forward to Reduce Diabetes Rates in Kentucky
Undiagnosed was followed by a panel discussion at KET’s Lexington studio moderated by Dr. Wayne Tuckson, host of KET’s Kentucky Health. It featured Connie White from the Kentucky Department of Public Health, Dr. Don Gillet of Lexington’s East Second Street Church and the Kentucky Council of Churches, Dr. Fred Williams, MD, a Louisville endocrinologist and former president of the Kentucky Medical Association, and Dr. Richard Heine, PhD, co-facilitator of the Fayette Co. Diabetes Coalition and the former executive director of the Friedell Committee for Health System Transformation.
In the show, the panelists discuss some of the outreach efforts portrayed in the documentary and strategize on how to scale up those programs and extend them out to more communities throughout the commonwealth. White encourages the studio audience and television viewers to be proactive and ask their medical providers to give them A1C screenings so they can get a handle on their blood sugar level. She says the Kentucky Diabetes Resource Directory offered by the state public health department is good website for people to use to find screening services and other resources such as the nearest Diabetes Prevention Program (DPP) that’s offered.
Williams advises viewers who do test positive for prediabetes to start by making lifestyle changes and also consult with their physicians about the possibility of taking medication.
“The good news is, there are studies that show these lifestyle changes do work,” says Williams. “Sometimes it’s not enough, and if we don’t see a significant drop in their A1C and their glucoses, and I’m satisfied that they’re making a real effort, then there are medications that can be used that will help.”
Both Williams and White agree that the longer a person waits to find out whether they have or are at risk for having diabetes, the harder it will be to manage the disease if they do end up with it. Williams adds that the medical community needs to do a better job of getting patients tested and educating them about the seriousness of having high blood sugar levels.
“People think of high blood pressure and cholesterol, those are the first things that come to their mind,” he says. “But what they’ve got to understand is that there’s damage being done, every minute, every day that their glucose is elevated.”
Barriers to healthy food choices, safe areas to exercise, and internet access exist in many Kentucky communities. The panelists conclude that its up to state health officials, medical providers and advocates such as Dr. Heine to find these vulnerable populations around the state and make screenings and programs such as DPP available to them. Church and community leaders have a role to play as well, adds Gillet, who will tell his congregation to meet at the mall for Saturday morning walking or get together at the church later for a healthy meal.
“You go out and talk to people,” Gillet says. “And you are the one not just telling them to go, but letting them see you at these locations walking around. I think we have to move beyond what we don’t have and begin utilizing what we do have.”
Heine concludes by informing those viewers watching who are socially minded to take the initiative on diabetes and start up their own grass-roots efforts to locate diabetes screening services, classes, and other forms of assistance.
“If you go to the Kentucky Diabetes Network website, there’s a whole toolkit, so if you are in a church, and you are at all interested in this topic, you might gather a few people together and address that issue (of diabetes outreach),” he says. “Because it has to be done inside that church. Nobody can come in and say, ‘Gee, you ought to be doing this.’ And doesn’t have to be a church, it can be a book club or (other organization). I think that’s the way we have to start thinking.”