This is a little too much government for my liking thank you very
much.
By Rob Stein
Washington Post Staff Writer
Wednesday, January 11, 2006; Page A03
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."
primum non nocere
Steve Schecter, NREMT-B
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