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By Jessica Bennett
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More than 11 million people in the United States suffer from an eating disorder, according to the National Eating Disorders Association. But the myth that eating disorders only affect upper-class white women is false; more and more, both men and women of all ages and ethnic backgrounds are facing the challenges of a debilitating eating-related illness. With the release this week of "Thin," HBO's new documentary that follows three women through treatment of anorexia nervosa, eating disorders have been brought back into the spotlight. Dr. Cynthia Bulik, director of the eating-disorders program at the University of North Carolina and author of the book "Runaway Eating: The Eight-Point Plan to Conquer Adult Food and Weight Obsessions" ( Rodale ), says she thinks the film will raise questions about the illness, its treatment options and where to go for help. She spoke with NEWSWEEK's Jessica Bennett. Excerpts:
NEWSWEEK: What are some of the characteristics of a person suffering from an eating disorder?
Cynthia Bulik: With anorexia nervosa, the hallmark feature is the maintenance of low body weight. These people are by and large less than 85 percent of their expected weight and often much less. To put it in context, they are the type of weights where you really don't expect people to live. Some of the perceptual components are that while we see [a person with anorexia] as emaciated, they sill look in the mirror and see themselves as fat ... When we move over to bulimia nervosa side, we have this pairing of binge eating—which is eating an unusually large amount of food in a short period of time—and feeling out of control. It's coupled with some sort of compensatory behaviors, be that self-induced vomiting, laxative abuse or excessive exercise.
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Bulik: 'Genes load the gun and an environment pulls the trigger,' she says of eating disorders
It seems that a lot of people still think eating disorders are a choice. Is that true?
Of all of the mental illnesses, eating disorders have been the one that people have assumed is a socio-culturally caused disorder. They have assumed that these are disorders of choice, and that young girls somehow want to look like models and so diet down to these unrealistic weights. But these people have never seen someone with anorexia nervosa. Because these girls go so far beyond anything that they might see in a magazine, and if you ask them or watch them, this is not trying to be thin to look like Kate Moss. It's much more of a hard-wired problem that they do not have the ability to come out of just by choice.
How would you describe the genetic influence on a person who develop anorexia, versus the social or cultural influence?
That is where we use twin studies to look at genetic and environmental contributions ... It's clearly both [genetic and environmental]. Genes load the gun and an environment pulls the trigger.
The debate surrounding many of these insurance battles has to do with whether or not eating disorders are biologically based mental illnesses, or BBMIs. What makes an eating disorder a mental illness?
The strongest evidence that we have now comes from the genetics research, where we've shown very clearly that there is a moderate to strong genetic contribution to risk for anorexia nervosa. And not only that, we've identified areas that appear to be linked to risk for anorexia nervosa. And we've gone even further to identify genes under those linkage peaks that might be implicated in anorexia. Now we're to the point of unpacking sort of how those genes function and contribute to the development of a disorder.
How would you rate the treatment of eating disorders in this country?
One of the things that's really interesting is that in some ways, eating-disorder treatment in the U.S. is so far behind parts of the rest of the world. Basically, in other countries it is completely understood that anorexia nervosa is a psychiatric disorder that requires care. People don't have to beg for coverage, they don't have to fly their children around the country to get treatment, and they can get multiple levels of care wherever they are in the country. When they hear the struggles that people have to go through just to get treatment for a life-threatening illness here, it just baffles them.
What are some of the barriers to obtaining treatment?
Often, what'll happen is that someone can't get into a treatment program because their insurance simply doesn't cover eating disorders, but more often than not what we're seeing is people who have limited benefits. So, if a person is 40 pounds underweight, that can't be treated in a week or two. It's dangerous to refeed people too quickly. It requires longer-term care for slow, medically supervised refeeding. And so what we find is that the insurance companies may give us enough time to get someone up five pounds, but they still may be 30 pounds underweight, which is still life-threateningly dangerous.
How expensive are treatment programs, and what questions should families ask in looking for an appropriate program?
Most range between $900 and $1,800 a day, across the spectrum ... The big question is where's the money going to? When you're in an inpatient hospital program, those beds are expensive because they're hospital beds at a medical facility, you're getting 24-hour oversight—that's why it's expensive. At [private] residential programs it's not always as clear where the money's going—and those are really important questions for parents to ask.
How often would you say patients are having to leave treatment early because of money constraints?
On a weekly basis, across the country. I'd probably even go so far as to say on a daily basis.
What does the data show about recurrence in cases where treatment is cut short?
The data are very clear that if you discharge someone when they're underweight, the probability of them coming right back through your door is high.
What are some of the long-term health problems caused by eating disorders?
The biggest one is osteoporosis. The long-term effects on bones are astonishing in these women. I've had women who've had anorexia nervosa for 20 or 30 years who get to the point that if they sneeze, their ribs break. That's extreme, but it happens. Long-term gastrointestinal problems. Fertility problems. It's this cascade of problems that as they get older, new things emerge. So if you wanted to put all of those things under the umbrella of eating-disorder-related health costs in the long term, that math would be relatively astonishing. And if you want to add dental complications [related to bulimia] to it, the price goes up even more.
Have the numbers of women and men suffering from anorexia changed over time?
When you look at anorexia nervosa across all the studies, it's maybe a little bit higher in the latter half of the 1900s, but not astonishingly so. It's more stable than escalating.
So if the numbers are relatively the same, then couldn't the argument be made that this couldn't possibly be a result of society today and skinny models and the cultural influences?
Exactly. And the fact that anorexia nervosa has been around from reports from the 1600s. It's clear that you can't argue that it's not just the effect of the current modern fashion industry. These things play a role, they're environmental triggers, but they're not the cause.
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