- (AP) -- 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?
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- 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.
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- 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.
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- "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.
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- 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.
-
- 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.
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- The Board of Health vote on the proposal isn't likely
until at least September, but it has already attracted attention from other
public health experts and privacy advocates.
-
- 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.
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- Diabetes is different, threatening no one but the people
who have it.
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- "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."
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- Pyles praised the intent of the program, but said unless
diabetics are asked for their consent, it would be "an outright violation
of the constitutional right to privacy" for the government to obtain
their identities.
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- 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.
-
- The American Diabetes Association supports New York's
plan. It could be a great tool for doctors who find it difficult to track
patients over long periods, said the ADA's Dr. Nathaniel Clark.
-
- 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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- Dr. Paul Simon, of Los Angeles County's public health
department, said other big cities could follow New York's lead.
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- "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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- 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 health department said.
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- Dr. Amy Fairchild, an expert on public health ethics
at Columbia University, said disease-monitoring programs have historically
been able to overcome privacy worries if the health threat is sufficiently
frightening.
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- "We respond with surveillance when we believe something
has reached epidemic proportions," Fairchild said. "And this
may fit the profile. Have we become a nation of obese people who are all
going to get diabetes?"
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- The program's success, she said, may depend partly on
how patients respond. "It's not necessarily that someone has that
information. It's that they're pestering you: 'The next thing I know, you'll
be telling me what I can and can't eat,'" she said.
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- Nationally, diabetes is the sixth leading cause of death,
according to the Centers for Disease Control and Prevention. It afflicts
about 18.2 million Americans.
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- Sandye Poitier-Johnson, 57, a public school principal
in Harlem who was diagnosed with diabetes a few years ago, said most people
could use help monitoring their condition.
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- "People say diabetes is serious, but they don't
take it seriously," she said. "I wouldn't think that this was
Big Brother or Big Sister watching me. I would welcome the help."
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- She urged the city, though, to get patient consent first.
"There is enough privacy invasion already in our society," she
said.
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