Wednesday, July 27, 2005

A Question of Government Surveillance

In September, the New York City Board of Health may vote on a proposal to require city labs to report results of A1c blood tests to track blood sugar control of diabetics. As CNN reported, this type of surveillance by the governement is raising a number of questions.

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.

"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.
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.


The proposed system requires no consent from the patient, which begs the question, does the government have the right to your medical records without your consent?

There are those who argue, as Dr. Frieden does above, that in the interest of containing costs the government must intervene. Also included in the arguements for surveillance that are supported by the American Diabetes Association:
  • it would allow doctors better access to medical information especially among patients who frequently switch doctors
  • it would allow the city Department of Health or individual physicians to follow up with patients who miss appointments
  • it would save the city millions by preventing complications of the disease

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.

First of all, I highly doubt doctors are going to appreciate letters in the mail suggesting their patients are not receiving adequate care. What exactly is going to happen to a doctor who has too many patients who are not controlling their blood sugars well enough? Will the city revoke their license? Will they be criminally negligent?

Before this type of plan can be even considered, one must know the consequences of non-compliance of a patient for the doctor treating them. Let's not forget that doctors cannot make a patient follow a treatment plan. Ethically they are bound to communiate to the patient the effects of the disease, the treatment available and do their best to motivate the patient to move forward with treatment to control the disease. They cannot, however, make a patient follow a treatment plan. And, taking that to the next step, a letter to the lax patient? Does the city think that doctors are not already aggressively communicating the importance of blood sugar control to diabetics? Do they really think pestering a diabetic to control their blood sugars is going to be effective?

What is to become of the lax patient who simply will not do what it takes to get their blood sugars under control? What exactly does the city have in mind for them? Does the city recognize the potential for such a plan to be counter-productive in that doctors may simply decide the risk to their practice is not worth accepting new diabetic patients in the future? What then?

Do patients have the right to refuse treatment, not comply with treatment plans and/or simply ignore their doctors' advice?

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.

"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?"

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.

Which brings me to my last concern about such a government surveillance program - what's next?

Will the government decide to monitor what we eat? How much we weigh? What our cholesterol is? How often we engage in active exercise?

3 comments:

  1. I think the problem that we both fear is that gov't will mandate something that is, according to their "experts," health-promoting. This has been proposed before in other forms, such as a junk food tax, or fat tax. The main problem is what if the experts are wrong? We will be forced to do something that we believe is unhealthful. You could say this is already the case in some areas already. For example, there are potential issues with childhood vaccinations, yet your children will not be admitted to school unless they can prove they have gotten all their shots.

    I understand that this is a "public health issue" but at least in the case of diabetes, this isn't something that is going to be transmittable as you say, unlike those who contract tb and then refuse to follow through on a course of antibiotics thus creating resistant strains of the disease. But diabetes is for one not transmitable, and secondly, even if you follow your docs advice (and that doc is getting his recommendations from the ADA) there's no gaurentee that you will be able to control your blood sugar. On the contrary I think the current recommended high carb diet only increases the insulin resistance to a point where eventually the patient is at extreme risk for all kinds of other problems due to the huge insulin load they need.

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  2. Thank God my father (type 2)found an endocrinologist who recommended he try the South Beach diet--she believes in the low-carbohydrate approach as a helpful way in controlling his blood sugar. I wish (as Levi said above) more diabetes doctors were open to the low(er) carb plans out there. Although it's a lifesaver for many, this insulin dependency lifestyle is definitely not the answer--as shown by all these poor folks who struggle to maintain that delicate balance.

    And damn the Government--they're approach once again is treating symptoms and monitoring things--it has to start with how we nourish and treat our bodies.
    Adam

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  3. First of all, not all forms of diabetes can even be prevented: type 1 which has no association with obesity, for example, is an autoimmune condition, and every scientific effort thus far to try and prevent it has failed -- the most prominent failures were the DPT-1, and DPT-2 (diabetes prevention trial).

    Even more troubling is the fact that the NYC Health Department's "spin doctors" are misrepresenting the facts to justify its heavy-handed initiative. The reality is that of the vast figure cited as the cost of treating diabetes in NYC, the city actually assumes little if any of that cost. $5 billion may be the cost to private insurance, but NYC has a budget of less than $1 million for diabetes ($950,000 to be exact).

    If NYC is going to cite statistics, do not misrepresent the facts when doing so!!

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