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…
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 Pe
tersen, 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 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.
 Statistics)
From my point of view, the American Diabetes Association is one of the worst sources of information about Type 1 diabetes. Petersen’s comment that diabetes is a continuum of diseases is simply not true. Type 1 autoimmune diabetes (both childhood and adult onset T1) is a distinctly different disease than Type 2: different genetics, causes, treatments, cures. ADA consistently promotes misinformation that causes serious harm to those of use with adult-onset Type 1–ADA denies we exist and includes us in the statistics for Type 2 diabetes. As for Australia knowing their exact number of Type 1s, they also have had the problem of misdiagnosing adult onset T1 as Type 2 diabetes (although Australia is ahead of the U.S. and is now doing a campaign to raise awareness about adult onset T1), so the numbers are certainly higher than just 3,617.
I agree with you about the ADA. I believe my adult onset Type 1, Hashimoto’s and other auto-immune problems were brought on by undiagnosed Lyme Disease in my body that I probably contracted as a child. It took a live blood assay for for the stealth bacteria, spirochetes, biofilms to show. Treatment with samento and other non-pharmaceuticals has led to a decrease in my insulin needs, and LDN is modulating my immune system to halt the progression of the other complications.
Also, I’ve found an integrative physician, a D.O. in my case, to be more helpful than an endocrinologist.
Boy do I get you on this! I’m a ketosis prone T2, which is a very big deal in both the African and Hispanic American community. How big? Can’t find out. Is it important? Given the fast rise of diabetes in both communities, it is going to have an inordinate effect on our health facilities for years to come. My best guess is that there are more people with this type of diabetes than people with Sickle Cell but I can’t say for sure without some data that gives me an idea of its prevalence. It is frustrating.
Mike
It’s sad. When I was dx’d with Type 1.5 lol or LADA I couldn’t find information at all. ADA nothing. JDRF nothing. IMO, if someone wants PWD’s to donate money and walk for a cure please talk about all types of diabetes! Once the different organizations realize we need each other and stop being in the “I” team, that’s when the world will understand and recognize “ALL” the types of diabetes. sorry for the rambles
There is a colossal amount of misinformation out there on diabetes. Like Allison Blass, who pointed to this horrifically ill-informed article from the Huffington Post today *by a doctor*, I’m terrified of what will be transmitted as ‘fact’ on Oprah’s show (she’s doing a show about diabetes, btw). This “doctor”–who will have a worldwide audience of MILLIONS–said that people are “born with” Type 1 diabetes. Really? Um, NO.
http://www.huffingtonpost.com/dr-mehmet-oz/its-not-just-a-little-sug_b_447838.html
Privacy is, of course, important, but the accurate collection and sharing of information could go a long way in figuring out what may cause or trigger diabetes.
We recently visited Australia and it is amazing how much more aware they are with what is going on with Diabetes. There are red boxes in the restrooms for people to throw away their needles. It is a big problem there, more than here perhaps, but they are working very hard to combat it and figure out what is causing it. They have high levels of Type 1 Diabetes.
working very hard to combat it and figure
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