Starved for adequate care

Anorexia nervosa struck Janell Smith, a teacher’s assistant, when she was 23. The active young woman loved by her family and friends began to disappear, overtaken by a tyrannical inner voice that told her she was too fat to deserve to eat. Swallowing even one spoonful of food became a monumental act of will; just seeing calorie-rich mayonnaise on a sandwich was enough to send her into a panic. For three years, the disease assaulted her body, mind and spirit, shrinking her to a low of 63 pounds on a 5-foot-3 frame, while the effects of extreme starvation on Smith’s brain made her incapable of thinking rationally.

In January 2003, she was hospitalized at Laguna Beach’s South Coast Medical Center, at first in the psychiatric ward. But Smith’s plummeting weight landed her for a time in the medical unit of the hospital to be tube fed. Then, in early March, Smith’s parents, Mary and Brian Smith, were informed by her insurance company, Magellan Health Services, that she would be discharged in three days, despite the dissenting view of her caregivers. The company was cutting off coverage for her hospitalization.

Janell Smith was still far too sick to be admitted to any outpatient treatment program, and her mental condition was known to be fragile. Still, she was forced to return to her condo in San Diego, where, a week later, she committed suicide by overdosing on a mix of alcohol and pills. She died on March 12, 2003, 26 years old, another casualty of a disease that has the highest successful suicide rate of any mental illness.

After their daughter’s death, Mary and Brian Smith sued Magellan and its subsidiaries for wrongful death and acting in bad faith. Facets of the suit have wended their way through the state court system up to the California Supreme Court, but the case will finally be heard before a jury in Los Angeles starting Monday.

The case highlights the issue of “medical necessity” that lies at the core of so many eating disorder-related health insurance battles, and that will be central to any health insurance reform. How does an insurance company decide who is sick enough to warrant treatment or hospitalization? Whom do we hold accountable for decisions about which treatments are “medically necessary” and which aren’t?

Answers are hard to come by because insurers deny or severely limit coverage for an eating disorder -- as with all mental illnesses -- based on a medical assessment process that is neither uniform throughout the industry nor transparent.

So far, attempts to change this system have been successful only in a piecemeal fashion. The suicide of Anna Westin, 21, in 2000 after her insurer denied coverage for her anorexia led to a lawsuit against Blue Cross and Blue Shield of Minnesota. The suit, which was settled out of court, resulted in the company’s redesign of its medical assessment procedure and, in turn, expanded access to care for members with eating disorders and other mental diseases. Earlier this month, Aetna settled a class-action suit over coverage for eating disorders, agreeing to pay $250,000 in reimbursements to as many as 100 New Jersey policyholders whose claims were denied.

The American Psychiatric Assn. has issued clear guidelines for the care of patients with eating disorders (including when to hospitalize and discharge them). Insurance companies, however, are not compelled to follow these guidelines and seldom do. Nor are they required to heed -- or even listen to -- a patient’s own doctor. Instead, they use the catchall term “medical necessity” to differentiate those who merit coverage from those who don’t, without defining the term.

With insurers ducking behind this meaningless lingo, patients and their exhausted families can only mount appeals, face mediation or sue. But corporate stonewalling, quibbling over claim-filing technicalities and other bureaucratic minutiae often simply wear them down.

Smith’s parents lost their daughter to an insidious disease that is much better understood than it once was. But the gap between what doctors and researchers now know about anorexia’s deadly risks and how it gets treated in the real world of the health insurance system was, in Smith’s case, too wide.

Narrowing that gap will require bringing healthcare professionals, insurers, lawmakers and consumers together to hash out medically safe and ethical guidelines for the care of the mentally ill, as well as a system to keep abreast of research. Unless that happens, those who can pay for treatment out of their own pockets after their insurance company cuts them off will get the care they need, although it may bankrupt them. Those who can’t afford such treatment, such as the Smiths, will be out of luck.

David Herzog is a professor of psychiatry at Harvard Medical School and directs the Harris Center for Advocacy in Eating Disorders at Massachusetts General Hospital. Nancy Matsumoto and Marcia Herrin are the coauthors of “The Parent’s Guide to Eating Disorders.”