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Big Brother in New York Will Monitor People with Diabetes Using A1c Results

Dec 20, 2005
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New York adopted a controversial health-code regulation Wednesday that will make it the first American city to keep track of people with diabetes in much the same way it does with patients infected with HIV or tuberculosis.

New York City is going to tackle diabetes just liked it tackled crime in the big apple.

 

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 non-contagious foe.

Conceived after a sharp rise in diabetes deaths over the past 20 years, the plan would require medical labs to report the A1c results, which 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 R. Frieden, the city’s health commissioner.

By pinpointing problem patients, then intervening ever so slightly 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 list of illnesses reported to public health authorities has grown over the years, but it still is almost entirely contagious diseases, like HIV, or conditions related to environmental toxins, like lead poisoning.

Diabetes is different, threatening no one but the people who have it.

The city’s program wouldn’t initially get consent to collect data, but would allow patients to opt out later. The database would also be tightly controlled, off limits to anyone but department staff, the patients and their doctors, health officials say.

Over time, 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.

The plan is akin to the surveillance system put in place in 1897 to fight tuberculosis. At first, doctors were outraged they had to report TB cases to the government, but it became a model after deaths plummeted.

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.

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