By Rob Stein
Washington Post Staff Writer
Wednesday, January 11, 2006
New York City is starting to monitor the blood sugar levels of its diabetic residents, marking the first time any government in the United States has begun tracking people with a chronic disease.
Under the program, the city is requiring laboratories to report the results of blood sugar tests directly to the health department, which will use the data to study the disease and to prod doctors and patients when levels run too high.
The unprecedented step is being hailed by many health experts as a bold attempt to improve care for diabetes, one of the nation's biggest medical problems, which is burgeoning into a crisis because of the aging population and the obesity epidemic.
Some public health experts, ethicists and privacy advocates, however, say that the initiative raises serious concerns about confidentiality and is an alarming government intrusion into people's medical care.
Both sides agree that the decision is probably a harbinger of a trend in which the government will apply tactics traditionally reserved primarily for infectious diseases to chronic conditions such as diabetes, heart disease, asthma and cancer, which have supplanted communicable illnesses as the most pressing public health concerns.
"Because of the enormous number of people affected and the costs, chronic diseases have become the most prominent issue in public health," said Lawrence O. Gostin, who directs the Center for Law and the Public's Health at Georgetown and Johns Hopkins universities.
"There are lots of good reasons to do this kind of thing, but the questions it raises all have to do with the nanny state: Should the government be collecting this kind of information? Should it be intervening like this?" Gostin said. "You can imagine it getting to the point where you have a public health worker showing up at your door and asking, 'Did you remember to exercise, eat right and take your medication today?' "
The government has a long history of tracking infectious diseases -- including cholera, gonorrhea, malaria, plague and, more recently, AIDS -- to protect the public. In addition to requiring that such diseases be reported, public health officials have sometimes taken more aggressive steps, quarantining sick travelers, confining tuberculosis patients who are not taking their drugs and notifying the sexual partners of people with syphilis. Governments also track cancer cases to spot clusters.
Some managed health care plans have begun gathering information about chronic diseases and notifying doctors and patients when care could be improved.
But the New York effort marks the first time any government has required routine reporting of laboratory test results for a major chronic, noninfectious disease so that government officials can scrutinize how well doctors and patients are treating it.
"It's really a natural consequence of calling everyday health conditions epidemics and public health threats," said Wendy K. Mariner of Boston University's schools of public health and law. "We've begun to talk about chronic diseases in the same way we talk about contagious diseases, and so it follows that we would start to take the same kind of public health measures."
Under the plan, beginning on Sunday all 120 New York medical testing laboratories with the ability to transmit data electronically will be required to report the results of a blood test known as A1c within 24 hours. Diabetics undergo the test at least once a year to provide a long-term measurement of how well they are controlling their condition, in addition to the blood testing they do several times a day.
Health officials first plan to use the data to monitor the quality of care and to determine which parts of the city are being hit hardest by diabetes.
But health officials also plan to use the data to directly intervene in individual patients' care. In a program that will be tested first in the South Bronx, city officials will alert doctors about patients whose blood sugar levels are not being well controlled and will offer advice.
Patients will be contacted. High blood sugar can lead to a host of devastating health problems, including heart attacks, kidney failure, amputations from nerve damage and blindness, but the effects can be limited by the careful use of diet, exercise, drugs and insulin.
"It really ravages and wreaks havoc on the body," said Diana K. Berger, who heads the Diabetes Prevention and Control Program in the New York City Department of Health and Mental Hygiene. "People can live long, beautiful lives with diabetes, but if they don't take it seriously, it can be devastating."
The plan has alarmed privacy advocates, particularly because the information is being collected without first getting patients' consent.
"It's an incredible invasion to privacy to have your sensitive medical information grabbed by the city of New York," said Robin Kaigh, a New York lawyer who opposes the effort. "It shocks the conscience that they are not even required to tell you this is happening."
Doctors may not even know data on their patients are being collected.
"It's a little creepy that it's being done so undercover -- in the laboratories -- where it's completely out of sight of the doctor-patient interaction," said Twila J. Brase of the Citizens' Council on Health Care, a nonprofit group in Minnesota.
Beyond the city having the information, other privacy advocates are concerned about whether the data could be passed on.
"This is really a recipe for invasion of privacy," said Sue A. Blevins, president of the Institute for Health Freedom, a Washington-based advocacy group. "Under the law, personal health information can be shared without consent for many purposes. All it takes is a click of a mouse."
That fear is shared by some diabetics.
"I don't want the city knowing any more about my private life. I fear this information could be taken out of the data bank and disseminated to people or places I don't necessarily want it to be disseminated," said Steven Lazarus, 44, a diabetic who lives in Manhattan. Lazarus is also uncomfortable with the government getting involved in his medical care.
"I don't want the city telling me what to do nor do I want the city telling my physician what to do," Lazarus said.
Although diabetes does not carry the stigma that AIDS once did, information about a person having the disease could make it harder for someone to get health insurance or, perhaps, to get a job.
"Government concern often shifts to government coercion," Mariner said. "Today we're telling people what you should do voluntarily. Tomorrow it may be we're telling you what to do or you'll be penalized."
Because New York is often a leader in public health measures, the decision is likely to prompt other jurisdictions to follow, for diabetes and perhaps other conditions, Mariner and others said.
City officials say the data will be kept strictly confidential.
"The department of health has a 100-year history of collecting and protecting highly sensitive data," Berger said. "The privacy issues being raised pale in comparison to the public health benefit. How could we not do something about this ravaging epidemic?"
Officials at the American Diabetes Association said the plan has merit as long confidentiality is protected.
"We greatly support the idea of helping people with diabetes better manage their disease," said Richard Kahn, the association's chief scientific and medical officer. "We also are concerned with information about a person's individual medical condition becoming publicly known."
Other experts praised the plan.
"There are hundreds of thousands of Americans who are going to have heart attacks, strokes, amputations and dialysis because we are not paying good enough attention to their diabetes," said Benjamin Littenberg of the University of Vermont, who has been studying the approach. "This has got tremendous potential to prevent an enormous amount of misery, pain and premature death."