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.