Today, another example of the more things change, the more they stay the same:
In his new book Diabetes Rising, journalist Dan Hurley reports about skyrocketing numbers of children being diagnosed with Type 1 diabetes in a wealthy Boston suburb. Parents there are desperate for answers as to why this is happening, yet “the lack of a national or even statewide diabetes registry complicates efforts… we know little about what causes Type 1 diabetes.”
In other words, critical data that could clarify whether this is crazy coincidence, or some much more alarming trend is simply not there!
Below is my lament on this lack of data from back in February of 2006. I realize that the idea of a “registry” makes some people nervous. But no one’s calling for a “Big Brother” approach. Rather a little more CDC effort to gather data on cases of Type 1 by now could have been very helpful, it seems…
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?”
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 million 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 parliament 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 one 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.”
Wow. That last bit’s a whole other issue. Meanwhile, we continue to know very little about Type 1 diabetes among the American population.