New York City health staff may start to track diabetics
The Associated Press
NEW YORK — At least half a million New Yorkers have diabetes, many of them at risk for blindness, kidney failure, amputations and heart problems because they are doing a poor job of controlling their illness.
The question is, how much privacy are they willing to give up for a chance at better health?
A century after New York became the first American city to track people with infectious diseases as a way to halt epidemics, officials here propose a similar system to monitor people with diabetes, a noncontagious disease.
Conceived after a sharp rise in diabetes deaths over the past 20 years, the plan would require medical labs to report to the city the results of a certain type of test that indicates how well individual patients are controlling their diabetes.
"There will be some people who will say, 'What business of the government is it to know that my diabetes is not in control?' " said Dr. Thomas Frieden, the city's health commissioner.
The answer, he said, is that diabetes costs an estimated $5 billion a year to treat in New York and was the fourth leading cause of death in the city in 2003, killing 1,891 people.
By pinpointing problem patients, then intervening in their care, Frieden said the city can improve thousands of lives. "I don't think we can afford not to do anything," he said.
The Board of Health vote on the proposal isn't likely until at least September, but the matter has already attracted attention from other public-health experts and privacy advocates.
The number of illnesses reported to public-health authorities has grown over the years, but they are almost entirely contagious diseases, such as HIV, or conditions related to environmental toxins, such as lead poisoning.
Diabetes is different, threatening no one but the people who have it.
"This isn't smallpox," said James Pyles, an attorney who represents health-care groups concerned with medical privacy. "The state, or the city in this case, does not have a compelling interest in the health of an individual that overrides that individual's right to privacy."
The city's program wouldn't initially get patients' consent to collect data but would allow them to opt out later. The database would be tightly controlled, off-limits to anyone but the health-department staff, the patients and their doctors, officials say.
Doctors could receive letters, telling them whether their patients have been getting adequate care. People who skip checkups might get a note from their doctors, reminding them of the dangers of untreated diabetes.
Dr. Nathaniel Clark, vice president for clinical affairs of the American Diabetes Association, said the surveillance system could be a great tool for doctors who find it difficult to track patients over long periods. Currently, he said, people who aren't aggressive about their care can easily fall through the cracks. Some switch health-care providers, and many people living in poor neighborhoods where diabetes is common don't have a regular doctor.
New York's program would involve collecting the results of A1c tests, which indicate blood glucose control over a few months, unlike the daily glucose tests diabetics give themselves. The A1c test is given for both Type 1 and Type 2 diabetes, the latter linked to obesity and accounting for about 90 percent of American diabetics. The program would cost between $1 million and $2 million a year, the city said.
Dr. Paul Simon of Los Angeles County's public-health department, said other big cities could follow New York's lead.
"Some people are uncomfortable with public-health departments expanding their scope beyond infectious disease, but I would say we have to do it," he said. "Chronic disease really accounts for the major portion of years of life lost to illness, these days."
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