Casey Johnson Died of DKA; Could Diabulemia Be To Blame?

Today, the Los Angeles coroner's office revealed that Casey Johnson's, heiress to the Johnson & Johnson fortune (who died on January 4, 2010) "natural death" was a result of diabetic ketoacidosis, also known as DKA. Naturally, Hollywood gossip columnists, including TMZ, were all over the story (see here for the TMZ report) and sources with the Los Angeles Police Department confirmed that they believed the cause was "medically related." The original news story on her death can be viewed here:



Of course, many of these tabloid stories are misleading. For example, TMZ just couldn't resist mentioning insulin, diet and exercise, for all practical purposes, blaming the troubled 30-year old for her death, when several commenters rightly noted that would be a painful and agonizing cause of death, unlike say an overdose of an illegal narcotic. Instead of acknowledging this as a legitimate tragedy, in a practice that has been all-too-common, blame has been shifted away from the disease itself and difficult and imperfect treatment protocols to the person who had this disease. Shame on all of them, and especially the doctors who seem much too quick to blame the victim, rather than the disease or the relentless treatment protocol prescribed.

The Los Angeles Times was somewhat more objective in its reporting of the news, and you can catch that news story here. But if you go back to my Twitter posts on January 4-5, when there was some chatter about Casey Johnson's death possibly due to HYPOglycemia, I countered I thought she might have diabulemia instead -- the girl was rail-thin and looked sickly thin, much like someone looks like before they're officially diagnosed with type 1 diabetes does. To be sure, photographs of Johnson suggested that she may have been battling a disorder known as diabulemia, which refers to an eating disorder in which people with Type 1 diabetes (most frequently, women with type 1 diabetes) deliberately give themselves less insulin than required, often for the purpose of weight loss and maintaining a svelte figure that is frequently expected within the Hollywood social circle that Johnson was associated with since moving to L.A.

A study by the Joslin Diabetes Center in 2008 found that women with type 1 diabetes who reported taking less insulin prescribed had a three-fold increased risk of death than those who did not skip insulin shots. The average age of death was also younger for those involved in insulin restriction: 45 years of age vs. 58 years for those who did not restrict. The study also indicated that women with diabetes were nearly 2.5 times more likely to develop an eating disorder than women without diabetes.

One not-so-minor fact that the tabloids and the popular press can't seem to comprehend is that an overwhelming majority of women with type 1 diabetes are NOT overweight, as is often the case with type 2 diabetes. Johnson did not suffer from the metabolic syndrome, which often causes weight gain. Nevertheless, unrealistic self-perceptions, especially for individuals in the public spotlight, may lead someone like Casey Johnson to intentionally manipulate her insulin doses in order to manipulate her weight. (Note: diabulimia is not an official, medically-diagnosed disorder, but a term used by the media and a growing number of healthcare professionals to describe a dangerous form of eating disorder that impacts patients with type 1 diabetes.) The lure of diabulemia is quite powerful; any excess pounds (whether real, or perceived), are quite literally, flushed away due to polyuria, and that occurs quite rapidly.

Managing type 1 diabetes, even without the impact of an eating or another psychological disorder, has been likened to walking a tightrope, while juggling -- blindfolded. The sad, but simple truth is that patients are always extremely close to either hyper or hypo glycemia, and both are equally dangerous. "Showdown with Diabetes" author Deb Butterfield once eloquantly wrote:

"Knowing what dose of insulin to take was not then, and is not now, a precise science. It is not a simple analog of food, exercise, and insulin; rather it is a complex and seemingly random theory of chaos with a few discernible known variables."

The National Institutes of Health and some of the medical literature seem to acknowledge this:

"To achieve glycemic control, many patients must walk a tightrope, balancing euglycemia against the danger of low blood glucose. Indeed, for many individuals with diabetes, episodes of severe hypoglycemia are the major obstacle to the achievement of euglycemia and the prevention of long-term complications. Hypoglycemia is frightening to patients and their families. In fact, for some individuals or their families, fear of hypoglycemia may outweigh concern over long-term complications of diabetes, leading to inadequate glycemic control. Fear of hypoglycemia is well-founded, as low blood glucose levels impart significant morbidity and mortality. Two to 4 per cent of deaths among individuals with type 1 diabetes have been attributed to hypoglycemia."

This is one reason why the new leader of the U.S. Food and Drug Administation, Dr. Margaret Hamburg, has proposed making home blood glucose testing standards tighter than is required by the International Organization for Standardization (ISO). (see The New York Times article here for details)

Dr. David Sacks, an associate professor of pathology at Harvard Medical School told The New York Times "Insulin is a dangerous drug, and if someone makes the wrong decision about its use because of a bad test, they could die."

How much fear of HYPOglycemia played a role in Casey Johnson's death is unclear. But I must admit that I have knowingly allowed my own blood glucose levels to be higher than I would normally and that has nothing to do with concerns about weight, but fear of lows. When I am home alone, hypoglycemia without without symptoms is a far more immediate danger to me than the risk of any long-term complications. And it is known that Casey Johnson's partner, MTV reality show star Tila Tequila, was away at the time of Johnson's death.

The simple truth is as follows: a 30-year old girl, even one who had absolutely no real concern about attaining basic treatment supplies (if I had to guess, Johnson would have an unlimited, free or dirt-cheap supply of test strips at her disposal) is by no means immune to the challenges associated with a demanding disease to manage. Her death was a tragedy, and blaming her is not only inappropriate, but is most likely inaccurate as well.

Redefining "Normal"

I have an admission to make: I really can't stand all the complete B.S. (I really wanted to use the real word bull$#!t, but I'll try to censor myself in the first sentence of today's diatribe) about PWD's living normal lives with this disease. It's not being honest, yet everyone who writes about it seems intent on perpetuating the myth that life with diabetes is somehow normal, or at least close to normal. Newsflash: It's definitely NOT normal.

What got me started on all of this was a fairly recent (or at least recently published) interview with Christopher Thomas (of the Diabetic Rockstar fame) on the apprently recently-resurrected "Diabetes Blog". In that interview, the Diabetes Rockstar himself states:

"Diabetics aren't damaged goods," he said. "It's not that all of us were overweight people who didn't take care of ourselves. We're just like everyone else. We have to be careful, but we can lead normal lives."

I think what he's really saying is that if you have diabetes, you're just going to have to change your definition of what normal means.

Doctors routinely give a less-than-truthful line about living a so-called "normal" life with diabetes. The reality is it's little more than window-dressing the ugly truth: when you live with diabetes, you're going to be forced to re-define what "normal" actually means. Call it anything you like, but as "Showdown With Diabetes" author Deb Butterfield once eloquently wrote "intensive insulin therapy is grounded in the assumption that it is reasonable to expect a person to perform these acts every day for the rest of his or her life."

I don't think Deb realized just how profound that statement was when she wrote it (maybe she did), but that's a pretty profound statement.

More recently, comedienne, d-blogger and fashion model Kelly Kunik said it another way "diabetes expects so much from the people whose lives it infiltrates", and she's absolutely right.

Diabetes Rising author Dan Hurley (see my book review here) used a really great analogy in his recent NPR interview that's a pretty good one (and I'll go out on a limb by saying I think Mr. Hurley is more forthcoming about reality of life with diabetes in that brief NPR interview than he is in his entire new book, perhaps because he has less time to talk about it with NPR):

"This disease they say is like a baby that never stops crying. It never stops demanding your attention."

The closing statement from the American Diabetes Association's ever-so-uplifting Diabetes Forecast magazine (that's sarcasm folks, this publication routinely spews the same crap about how normal it is from whomever they interview) interview with three-time U.S. Olympic cross-country skier Kris Freeman in response to the question about what kids with type 1 diabetes should learn from him. In response, Freeman also responds a bit more candidly than the author might have liked:

"As long as you are always on top of it, anything is possible with this disease. You just have to work harder."

Incidentally, d-blogger Bernard Farrell's interview with Kris Freeman is much, much better, catch it here.

The sad reality is that once you're diagnosed with type 1 diabetes (or type 2, for that matter), your life will be irreparably changed forever. One of the first things to disappear is spontaneity -- that will be gone forever, as you'll be required to plan everything, and lug a bag of supplies with you -- everywhere.

Even long-time type 1 advocate Mary Tyler Moore, in her recent book, in spite of some of my migsivings about letting her editors have too much control over her book's content, did address this (catch my review here):

"Spontaneity is one of the first of life's pleasures that's lost when diabetes appears."

Amen to that!!

Some Truth About Diabetes Treatment Is Needed

So at the core of my diatribe today is why can't the medical establishment be more honest with patients?

Again, my friend Deb Butterfield had something to say about this back in the summer of 2002, and I think she was right.

"Just last week at a small 'diabetes family night,' three of the five mothers of diabetic children there said that they had been told not to worry too much about their children's blood sugars, that children are resilient to complications. No doubt, the doctors, with good intentions, are trying to ease the worries of the mothers and children with their platitudes. Using reassuring voices and sweet smiles, nurses convey the message that if you do as you're told, then everything will be okay – just as in the NDEP campaign, they are telling their patients that diabetes is controllable, and if they control it, they will be fine. But the truth is that no study, not even the Diabetes Control and Complications Trial, has ever been able to show that diabetes management can prevent complications. Of course, in the absence of a cure, diabetes management is important to slow the progression and delay the onset of complications as much as possible, but we should not delude the public, or ourselves, that management is sufficient. At best, it is an inadequate treatment until a cure is found."

Well said!

But the charade is up, folks. Living with diabetes is not "normal" and anyone who tries to tell you otherwise is lying, or at least misrepresenting the facts.

Mr. Hurley also candidly states (in the afforementioned NPR interview) another observation about life with diabetes and just how truly "controllable" the disease really is:

"I think we need to accept that we are human beings and we were not put here to control our blood sugar and that we do the best we can, and if dieticians and doctors could begin to accept a little better that we're not screw-ups because our sugar is running a little high, we're human beings, and we've got more important things to do with our life than stare at our blood sugar all day. We do our best, we try, and you know, I think people with diabetes need to accept their inevitable failings. It is inevitable. There is no way to keep your sugars normal all the time, and you do your best and you try."

Another d-blogger, Eric Devine, laments "Will It Ever Be Enough?" Not if you were to listen to public health officials, doctors or both.

The more important question is: How do we convince the medical profession to start talking about diabetes more honestly, something they seem to be reluctant to do? (How many of you have heard a cure is 5-10 years away? Do you still believe that? Didn't think so!)

Timewarp Tuesday: Why We Need A Cardiovascular Risk Model Exclusively For Type 1 Diabetes (AGAIN!!)

As Amy Tenderich, Riva Greenberg and a few other diabetes bloggers have noted, February is American Heart Month, a time in which various organizations will call attention to cardiovascular disease (including stroke) which is our nation's No. 1 killer, and also the leading cause of death among people with diabetes (of both type 1 AND type 2).

But since this is one of my Timewarp Tuesday blog postings, I would also call your attention to a blog posting I did back on October 19, 2006 in which tried (unsuccessfully, I'm afraid) to call attention to the fact that there was still not a cardiovascular disease model that was applicable to patients with type 1 diabetes. In the past 3 1/2 years, I am very sorry to report that almost NO progress has been made in addressing the issues I called attention in my original posting ... we still don't have a cardiovascular disease risk model applicable to patients with type 1 diabetes, even though this remains the #1 killer of those of us with type 1, and yet there is evidence that existing risk models do not work for this population.

What the hell are you all doing?

I think special attention should be raised on the current leader of the NIH/NIDDK, and Dr. Griffin Rodgers, who is supposed to be representing our needs to Congress. I'd also like to reiterate my call for the American Diabetes Association, the American Heart Association and the Juvenile Diabetes Research Foundation to pool their resources to pursue predictive studies on this very issue. Let's hope I'll be more effective the second time around!

Anyway, here's the content of my original post:

A Reuters article published the other day (October 17, 2006) provided some disturbing (although unsurprising) statistics which I felt were worth sharing:

The study (available at the online journal Public Library of Science) showed that elderly participants with diabetes were twice as likely to die from cardiovascular disease as non-diabetics, and that the risk was particularly high for patients who treated their disease with insulin injections. Researchers also found that participants who were taking insulin were six times more likely to die from infectious diseases or kidney failure than non-diabetic participants. Women treated with insulin had a particularly high mortality risk.

The researchers noted that their results were adjusted for factors already known to affect heart disease risk including smoking, alcohol consumption and cholesterol levels, which is indeed useful. However, their study failed to acknowledge whether they even examined whether there were any clinical differences observed between type 1 and type 2 diabetes. We do know, however, that only 194 of 5,372 participants (3.3% of the cohort) with diabetes treated their condition with insulin only, so we can probably assume this tiny segment represented patients with type 1 diabetes.

Earlier this year, researchers found that cardiodvascular risk models are not predictive for patients with type 1 diabetes because risk models only exist for the general population, and patients with type 2 diabetes. In addition, researchers at UC Davis Medical Center in Sacramento, CA reported that the cause of cardiovascular inflammation in patients with type 1 diabetes appears to be autoimmunity, not the risk factors often observed in type 2 patients, including hypertension and obesity.

The researchers noted that a major limitation of this particular study was the fact that participants on insulin may have had greater duration of diabetes since most patients with type 1 diabetes (which requires insulin treatment) are diagnosed at much younger ages than the typical type 2 patient. The editors also noted that elderly people often receive less-intensive treatment of risk factors for heart disease, such as high blood pressure and cholesterol, than younger people.

But perhaps even more important is the fact that it is probably time for resarchers to do a comprehensive cardiovascular risk prediction model for type 1 diabetes because risk factors including younger age at diabetes onset and presence of diabetes complications are not considered in the existing models. With all the money being poured into such unnecessary studies as the effects of chili consumption on postprandial glucose, insulin, and energy metabolism, or maybe lifestyle intervention associated with a lower prevalence of urinary incontinence (I kid you not, these were genuine studies published in prominent scientific and medical journals - read them for yourself using the links provided) it is about time researchers put their efforts (and our money) into something that might possibly benefit the type 1 diabetes community.

I sincerely hope that the NIH/NIDDK, JDRF and others are reading my recommendations on what types of studies they should be pursuing!