State doesn't know where diabetes services are
CHARLESTON, W.Va. -- "I read that story in the paper and was hoping you could help me," Carolyn said. "I don't know where else to turn."
Carolyn (not her real name) lives in Madison. "I just got diagnosed diabetic, and I want to get a grip on it," she said. "I need help, but don't know where to look. I thought maybe you could tell me where I can find one of those counselors."
She had read about a Mingo County man who brought his out-of-control blood sugar down to normal by working for months with a diabetes coach. "I need a counselor like that," she said.
So do tens of thousands of other West Virginians. After every newspaper story about diabetes, people call.
Another Boone County woman, Judy Handley of Danville, called a few days earlier. "I don't have diabetes, but sugar's all over my family," she said. "I want to take one of those classes that teach you how to keep from getting it."
About 125,000 diabetics live in West Virginia, according to Gallup Healthways. Another estimated 125,000, like Handley, are near-diabetic, but can still head it off.
Less than half have ever talked with anyone who could show them how to prevent or control "sugar" through physical activity, what they eat, and medication management, according to a federal Centers for Disease Control survey.
If this were Kentucky, the two Boone County women could go to the Kentucky Diabetes Resource Directory on the Internet and find a county-by-county list of classes, doctors, and dieticians.
They can't do that in West Virginia. Nobody in West Virginia -- including the West Virginia Diabetes Prevention and Control Program -- has a list of services, much less a county-by-county list.
With no list, nobody in West Virginia really knows what diabetic services are available or where they are. That makes it hard for anyone to accurately target areas of greatest need.
About seven years ago, there was such a map on the West Virginia Diabetes Prevention and Control program website. People could click on any county and find services available in that county, if any.
The state took it down. "It took too much staff time to keep it updated," program manager Gina Wood said in May.
West Virginia's program has only three staff people and a budget of about $900,000 in state and federal money. "We struggle to find out what's going on," Wood said. "We just don't have the troops to do what needs to be done."
West Virginians pay more than a billion dollars for diabetes care. Diabetes leads to heart and kidney disease and many other serious problems. It's in every taxpayer's interest to prevent more diabetes, said health economist Ken Thorpe.
To slow the rise of health care costs, Thorpe said, West Virginia should set up a network of programs that help people prevent and control diabetes, he said. A first step: a list of existing services.
"That's how uncoordinated we are."
A list can be an important thing. It's hard for doctors to refer patients for self-management training when there's no list, said state Sen. Evan Jenkins, D-Cabell and director of the West Virginia State Medical Association. "A good education program takes weeks," he said. "It can't be provided in an office visit. A list makes it easy for doctors to refer."
Lack of a list makes it hard for hospitals too. "People come to our clinic from all over the state, but we have no listing to refer them to education programs in their area," said Dr. Bill Neal, pediatric cardiologist at West Virginia University Hospitals.
Krista Farley at the Kanawha-Charleston Health Department is working on a nine-county prevention program for a federal grant. "It would be incredibly useful for planners to be able to look and see what's already there," she said.
In some states, the American Diabetes Association keeps a list. But the ADA closed its West Virginia office three years ago. They say they're coming back in 2013, but they're not here now.
"Most of all, it creates a problem for people who need help," said Pat White, who directs West Virginia Health Right's diabetes program in Charleston. West Virginia leads the nation in diabetes, according to the Gallup Healthways poll, but "most state diabetics are pretty much on their own when they try to learn how to control their diabetes," White said.
West Virginia program manager Wood said she did not realize Health Right -- which serves 8,500 diabetics -- operates a diabetes education program.
"I didn't know the state had a diabetes prevention program," White said. "So that's how uncoordinated we are."
So how do West Virginians find help?
The Boone County Health Department offers a once-a-month diabetes support group, led by a nurse. It is, by all accounts, the only publicly available education service in Boone County.
To get a self-management education class, Carolyn or Judy must drive to Charleston or Huntington. All Charleston hospitals offer multi-session classes, open to the public.
"I don't drive," Carolyn said. She can't get on the Internet. "I don't have a computer."
Community health centers Hygeia and FamilyCare do not offer diabetes education classes in Boone. FamilyCare's free classes are in Charleston or Teays Valley.
The Gazette-Mail decided to pull together a statewide list of services.
Agencies agreed to help. The West Virginia Hospital Association assembled a list of their members' education programs. The West Virginia Primary Care Association polled the state's 28 community health centers. The American Association of Diabetes Educators has a list of West Virginia members. The state Board of Medicine keeps a list of endocrinologists, diabetes specialists.
Different sources helped with diabetes support groups, free clinics and other lists. It took about two weeks for one person to compile this much. While the lists are incomplete, they are more comprehensive than anything else available.
A few things jump out:
"We don't get paid to offer that, and we're stretched thin already," one public health nurse said. They all envy Kentucky. In Kentucky, the state pays every county health department to offer at least one diabetes self-management class per year.
The Kentucky legislature supplied $3.4 million for diabetes services last year (77 cents a year per Kentuckian), compared with West Virginia's $108,000 (6 cents per West Virginian). "That makes a big difference in what a state program can do," Wood said.
The lists that accompany this article will stay on the Charleston Gazette website, wvgazette.com, and www.livewellwv.com, managed by West Virginia University Extension Service. Anyone is free to use them. We hope some agency will adopt and update them.
Reach Kate Long at 304-348-1798 or firstname.lastname@example.org.
"The Shape We're In" was written with the help of the Dennis A. Hunt Fund for Health Journalism, administered by the California Endowment Health Journalism Fellowships at the University of Southern California's Annenberg School for Communication and Journalism.