Thursday, February 04, 2010

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.


Bob Hawkinson said...

Wow Scott....great article and nicely said. I often hear how people describe diabetics as not taking care of themselves or out of control or in denial they have the disease. While these may be accurate descriptions, they are often said with the tone of "moral judgment" and acting as though the diabetic is either lazy, ignorant, or simply unwilling to do what it takes. This is a chronic and unyielding disease that can take your body, and if you let it, your heart and soul. A daily battle is ongoing to stay in the right frame of mind no matter what your body is doing..."diabetically". (there's a new
I am actually amazed to see that the number is only estimated that 2-4% of type 1's die from Hypoglycemia....I would think it would be much higher than that.
Thanks for sharing Scott.....

Keep going...........Peace, Bob

Allison Blass said...

Her life was clearly more complicated than simply "I don't want to take insulin" (though if she had diabulimia, that could have been the case). Nonetheless, something got to her, whether it was being an heiress, a PWD, or something else. Who knows? The point is, she's gone now and it's very sad to lose any life especially when it could be preventable. And the best prevention is to not have to prevent it at all (i.e. a cure!)

Anonymous said...

It’s much easier for me to blame the insulin because of all the problems I have with rDNA synthetic products. That being said, DKA is a relatively long-term result rather than a one-time mistake in insulin-dose calculation, resulting in a serious low (hypo). DKA always begs the question: Who in this young lady’s immediate circle—most importantly her caregivers—could not see that she was having a serious problem managing bG levels? Psychologically, running away from instant death as a result of keeping bG’s too low is certainly more justified when those who set the rules make this the standard. Someone in her immediate circle should have recognized she was in trouble.

As you have so ably explained many times before, the words ‘control’, ‘management’, ‘balance of variables’ (known and unknown) and the individuality of this complicated disease allow our caregivers to always blame the patient. Why hasn’t the blame ever shifted to the caregiver who avoids answering the DIFFICULT questions, when bG levels appear to skyrocket or plummet for (apparently) no reason. I find it interesting in recent articles about T2’s that a great deal of interest is given to GLUT4 insulin-receptor activity and what causes the fluctuation in their activity level. T1’s also have fluctuations of daily life which influence activity, unbeknownst to the patient of the caregiver.

The 2-4% who die each year from hypoglycemia may reflect the pharmaceutical industry’s needs, the tight-control-mantra caregivers and our charities ‘land of milk and honey-mantra’ that all is well in the world of diabetes. The sooner we recognize “the FIX is in” and the real numbers will never be reported, the quicker we can get out of being the stupid patient who takes the blame for everyone else’s mistakes. The term ‘caregiver’ means just that—giving CARE based in science, not platitudes.


Mike said...

What I find funny/interesting/sad about this story is that Diabulimia is just as juicy and sensational as skipping insulin or illegal drugs. It's a freaking eating disorder! Come on TMZ.

The only problem with the mainstream press is that it would require more work to report on such an issue. They've got the illegal drug story already written...they just need to change the name from Brittney Murphey to Casey Johnson.

I battled with my own Diabulemia, and still struggle a bit with it from time to time. I blogged about it here.

Good blog post, Scott!

Cherise Nicole said...

Scott- your post alway, Always, ALWAYS teaches me something new. I really enjoy reading them.
I was at work when I read about Casey Johnson. My co-workers had a field day with it. It goes to show how much people really don't know about diabetes, insulin, DKA's and hypo's.

Anonymous said...

Casey Johnson supposedly wore an insulin pump. I test 12x per day and wear a CGMS and still have almost gone into DKA due to faulty sets, poor absorption, factors A,B, and C. etc. This poor girl could have easily died in her sleep having no clue she was going into DKA. Apparently she was found "surrounded" by syringes, so perhaps she woke up, injected herself, but it was too late and she needed an IV to stabilize her PH balance. She would have died after injecting the insulin (potassium shift) and that may not have been found on autopsy. I am sick of the media always blaming the diabetic. I'd like to see THEM live with this horrible disease for a lifetime.

bethesda pharmacy said...

Hi! Just found your website today. Actually i heard about the news before, casey is too young and it really shows that age or status in life does not matter. Thanking of our health is really needed specially now we are encountering different situation in our lives.

Lyrehca said...

I too wondered if diabulimia was part of Casey's history when I read the news about her cause of death this week. Great post, as always, Scott.

Amega Products said...

I've seen this once on TMZ but I never heard of the true story. Good thing I landed on your blog. Great post Scott.

berann said...

I first read about this at Casey Johnson’s Death Linked to Diabetes only thing I can say is what a waste, at least she had live her life no matter how brief to the fullest. My condolense to the Johnson's family

@nne said...

I'm of the thought (and it's only that) that Casey's death was caused by taking illegal drugs, and then by taking too much --misjudging the amount due to not thinking straight due to drugs.

She may have given too much insulin and then died in her sleep.

I misjudged my insulin one night after drinking and the results were very scary. Note: I no longer drink.

This doesn't rule out the diabulimia, but giving too much insulin while high and then sleeping is a distinct possibility.

Blaming diabetics for the management of their disease is so very common and appears in many forms.

I too offer condolences to the Johnson family. Very sorry that it happened.

Kendra said...

Thanks so much for this post, Scott. You are spot on. I can't fully describe the anger and sadness I felt as I read the news reports about Casey's death. I came across one article outright blaming her for her death on a site supposedly dedicated to "women's health"; the article was posted under the question, "Why don't patients listen to their doctors?"

Ignorant, judgmental jerkfaces, the lot of them. While they're so busy expressing their mock concern, they obliterate the possibility that they might actually learn something about this disease and thus be able to help someone living with it.