What Value Do You Place on Your Privacy?

If you live in New York City and have diabetes, your right to privacy is gone. A mandatory registry of all diabetics is in effect.

City officials assert that the registry exists to meet the need of a chronic disease that is “out of control.” Out of control it is—only 7 percent of patients with diabetes have controlled A1C, blood pressure and cholesterol levels.

No doubt something needs to be done, but I question whether the registry is the right method. Educating patients on how to effectively manage their condition is a necessity. However, the New York City registry does little to actually provide intervention and assistance to patients. Right now, the plan is to both send letters to those individuals who have A1C results over 8% and to assist providers in tracking their patients’ progress.

A budget of $2.7 million has been allocated to fund the registry this year. Those dollars are spent in hopes that collecting the data will eventually translate into cost savings once A1Cs are lowered. Indeed, better-controlled diabetes does lead to a reduction in complications. And there is evidence that registry-based monitoring is associated with decreases in A1C and blood pressure levels.

Why Be Concerned?

New York City is the first area in the country to get aggressive politically and require data on routine testing for a major chronic noninfectious disease (registries for HIV or tuberculosis are common).

This registry will track highly personal information: A1C results, ethnicity, addresses, phone numbers and dates of birth.

Some have described the registry as putting the cart before the horse. What happens when patients who are called because of high A1Cs can’t get their numbers down? What happens when patients can’t afford or manage to aggressively control their condition? Are there mechanisms in place for those who cannot read the letters or who do not even understand what an A1C is? City officials have not been able to fully answer those questions.

In all other government-regulated registries, the governing body plays a part in financing patient care. That is not part of the plan for diabetes.

I can appreciate this innovative and aggressive approach on the part of New York City in trying to curb this epidemic, but I believe the diabetes community needs to ask a lot more questions and demand many more answers. It also seems to me that the element of partnership with the diabetes community is missing.

One person with diabetes in the New York metropolitan area described the situation this way: “I am torn. If publishing my A1C results helps make sense out of this epidemic, then I am all for it. However, the only way for a person to truly be in control of a condition like diabetes is for that person to want to be in control—you can’t force it.”

Will this program make a difference? The answer remains to be seen.

At what cost are we willing to play a part in controlling the epidemic? We all need to think about that. The New York City registry is just the start of the debate.

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