Confounded Statistics

Quote of the month: a lack of specific diabetes data “really does hamper us on a national level — for knowing who’s got what and where. We don’t know where to put our energies. How do you base policy on only the vaguest of data?” — Matt Petersen, director of information for the American Diabetes Association.

Now don’t get me wrong. It’s not the ADA’s fault. I’ve been researching LADA or Type 1.5 or whatever you might like to call the onset of insulin-dependent diabetes in adults, and have discovered that no one has a very good idea how many people in this country have this disease at all. It seems even the diabetes drug and supply companies are guestimating. Kinda mind-blowing.

But what else can they do? None of the national health statistics organizations (not the CDC, NIH, or even IDF) can provide any hard numbers on overall cases of “Type 1″ diabetes, especially for the United States. The Centers for Disease Control (CDC) estimates that there are “over six millionStatsdiagnosed Americans with diabetes who take insulin,” but breaking down that data is anyone’s guess.

There are two main reasons for this, I’ve learned:

1) From a public health perspective, Diabetes is Diabetes. That is, it’s just a condition that requires controlling blood glucose over time to avoid serious health complications. Circa 21M people in America currently have this condition. Whether their pancreas still works, or they are fat or skinny, or taking tablets or injecting insulin doesn’t really matter that much. (Paraphrased from Petersen; he did not use the word “fat”)

The point being,
the different types of diabetes are not specificed, nor even clear in many
cases, according to Petersen: “Diabetes is a continuum of different problems. Some
people with ‘Type 2′ have strong rates of declining insulin production. Where
is the true physical dividing line?”

2) PRIVACY. It’s what America is all about (or so we like to think). We do not have centralized healthcare, nor cumpulsory tracking of health data in any way, nor do we want it — i.e. the reaction to New York’s latest attempt at monitoring diabetics. The data we do have does not come from doctor/patient records, which are strictly confidential. Rather, it comes primarily from the CDC’s three large-scale annual surveys, in which random populations of people are selected to volunteer their health information. Nationwide statics are extrapolated from this microcosm of information.

What a fuzzy way for such a huge and powerful nation to track public health, no? Petersen chuckled as he shared this illustration:

“A few years ago, a newly elected senator from the Australian parlaiment came to
visit us. He had Type 1 diabetes himself and was on a fact-finding mission. He asked how many Americans have Type 1 diabetes? I told him we estimated half a million to 1
million people. He stared in disbelief. Estimated? Such a broad range?”

“So we asked him how many people had it in his country. He said, ‘In my country 3,617 people have Type 1 diabetes.’ Every one
of them was tracked! Every one gets their insulin directly from the government.”

* * *

It may just be that we don’t know what’s happening or where the heck we’re going in this country, as SF columnist Mark Morford so eloquently states in his latest Notes & Errata (prepare to laugh out loud!). But still if I have to have diabetes, I’m glad to do it in this nice, comfy Western Industrialized country. Right, Elizabeth?

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