In New York City, 530,000 people have been diagnosed with diabetes, and another 265,000 have it but don't yet know.
"Diabetes is an urgent public health crisis in New York City," said Diana Berger, medical director of the Diabetes Prevention and Control Program (DPCP) in the New York City Department of Health and Mental Hygiene. "The prevalence of diabetes has doubled from 1994 to 2004 from about 4 percent to 9 percent, with areas such as the south Bronx where the prevalence is up to 18 percent."
To combat this growing epidemic, the DPCP wants to collect in a central database patient information relevant to the disease -- such as results from the hemoglobin A1c blood test, which tells physicians what a patient's average blood sugar has been over the past three to four months.
The Board of Health will vote in December on whether to pass the proposal to start this pilot in the Bronx.
"As our commissioner [Thomas Frieden] says, he does not use the word 'epidemic' lightly," Berger said. "He's trained in infectious disease and tuberculosis control, where they certainly are epidemics. And diabetes does fit into the category of epidemic in the city, in the country, in the world."
Those with diabetes who don't keep their hemoglobin A1c levels at a normal to excellent range are at a higher risk for heart disease, stroke, kidney failure and amputations, among other difficulties. A normal hemoglobin A1c is less than 6.5 milligrams per deciliter (mg/dl), an excellent A1c is 6.5-7.5 mg/dl, good is 7.5-8.5 mg/dl, fair is 8.5 to 9.5 mg/dl, and any greater than 9.5 mg/dl is poor.
There are other strains and complications as well.
"The estimates of the American Diabetes Association are that about $132 billion a year is spent in the direct and indirect care for people with diabetes. It's a tremendous financial burden," Berger said. "In New York City, we know that among people with diabetes, there's a twofold increase in significant psychological distress, including anxiety and depression. So there's tremendous economic, psychosocial and medical complications associated with diabetes. It's devastating."
The Department of Health intends to use the collected data to create an effective intervention program, potentially reducing morbidity and mortality from diabetes.
"We're still grappling with what the best intervention will be, but it will probably be some type of feedback to clinicians and patients," Berger said, adding that one model the department is looking at is the Vermont Diabetes Information System, a research trial funded by the National Institutes of Health's National Institute of Diabetes and Digestive and Kidney Diseases. "They're feeding back rosters of patients to primary care clinicians," Berger said.
Most doctors see patients one by one, and don't think of them in terms of a large population. By keeping track of diabetic patients' A1c results, the Department of Health can send information to individual doctors about their diabetic patients and where each falls in the A1c categories.
"It will help clinicians hone in on the patients who need the most support, who may need intensified therapy," Berger said. "Since there is a limited amount of time and resources that clinicians have with their patients, maybe those whose A1c is under 6 they may not need to see as frequently."
Patient feedback may also help, as only 10 percent of people with diabetes know what their A1c is, Berger said.
"That can be for many reasons. Either doctors aren't sharing that information with their patients, or they're sharing it and their patients aren't understanding it, they're sharing it and the patients forget," she said. "If you don't know your A1c, you don't have a goal, and in medicine, we often say, 'If you're going to do