Amy Lambert looked at her cup of fat-free yogurt and painstakingly ate every bite. She began to panic, and in one quick motion the empty cup hit the trashcan and Lambert was lacing her running shoes. She spent the next hour burning the 100 calories she had just consumed—and the others her body was desperate to store for survival. But running was her only comfort for the overwhelming loss of control eating made her feel.
"Eating such little amounts of food made it difficult for me to feel anything emotionally," Lambert recalls. "It quite literally takes too much energy. The body is more focused on surviving than emoting."
At least 24 million Americans suffer from eating disorders, which have the highest mortality rate of any mental illness. Twenty percent of people with an eating disorder will die prematurely from complications related to their disease.
Yet, unlike schizophrenia, depression and other mental illnesses, eating disorders such as bulimia and anorexia are not often covered by health insurance. Insurance companies regularly deny patients coverage, which is expensive and long term—as many as five or six years, according to a study published in the International Journal of Eating Disorders.
And if insurance companies do cover the treatment, they base "wellness" on the person's body mass index, without considering the crucial psychiatric treatment for the emotional and mental issues that linger long after the patient reaches that magic number—a B.M.I. of 18.5.
Federal legislation is addressing the issue—but only partially. The Wellstone-Domenici Mental Health Parity Act went into effect last month, but eating disorder activists and clinical directors say the law leaves too much wiggle room for insurance providers, which can set their own limits on treatment.
A more comprehensive bill introduced in February 2009, the Federal Response to Eliminate Eating Disorders Act H.R. 1193 (FREED), would require significant changes in how eating disorders are studied, recognized and treated.
Yet while the FREED Act lingers in a congressional subcommittee, many people with eating disorders are exhausting their life savings for treatment. And in the most severe cases, they're dying from a lack of it.
Lambert traces her eating disorder to the difficulties she had in a relationship with a man 20 years her senior. At 18, she started fasting as she searched for "God's will"—the will she says the man, who she says was married, claimed approved their secret relationship.
Fasting led to a sense of euphoria. Lambert realized she could control something: maybe not her body or her relationship, which she says was psychologically abusive, but she could control the food she ate.
Her eating disorder was the only place she felt secure, Lambert says, especially after the man, who she says tracked her moves at college and had a key to her apartment, noted her weight loss and said, "I don't want to have sex with a skeleton."
"Thin was safe," says Lambert, who first sought outpatient treatment while pursuing her master's degree in divinity at Duke University. "I didn't care how the world saw my physical being. My disorder was a protective coping mechanism for the years that I was not safe. In my mind, the only way to be safe was to be 'small' and the only way to have control was to control my food intake and weight."
What we know about eating disorders often comes from the media, which often inaccurately portrays eating disorders as illnesses of choice.
"We now know that eating disorders are not simply disorders of will or choice," says Chase Bannister, clinical director for Carolina House, a 24-7 residential eating-disorder treatment facility in Durham. "They have a significant biogenetic component that takes skilled treatment and remarkable courage to manage for one's whole life."
Treatment includes inpatient care (the patient stays in the facility and works with a team of specialists), partial residential (the patient goes home at the end of the day) or outpatient, in which the patient sees therapists but lives independently.
Yet insurers often refuse to cover even the cheapest treatment level: outpatient care.
"Even then, my insurance [Blue Cross Blue Shield] did not cover any of those appointments," says Lambert, who, as a college student, struggled to pay for her therapy. "They said they would cover the claims, but when I submitted my claims from therapy, the insurance bounced it around until the claims became void."
Lambert relapsed, and within a year she became dangerously malnourished. Her pulse rate was too low—55 beats per minute (the healthy range is from 60 to 100), and her intestines no longer had the muscle strength to process food. Her doctor advised her to check into an inpatient program.
Lambert approached Blue Cross Blue Shield, which denied her residential care. "They said, 'Just eat.' I wanted to yell and say, 'What do you think I've been trying to do in outpatient?'" she recalled. "But I didn't have any fight left in me."
After pleading several times with the insurer by phone, Lambert was able to nail down coverage of a week to 10 days of care.
While that amount of time seems lengthy for typical hospital visits, for those with an eating disorder it is a brief moment in which to change ingrained patterns and to begin psychologically treating the underlying issues.
"If you're really ill, 30 days is just the tip of the iceberg," says Tori Toles, intake coordinator at UNC's Eating Disorders Program. "If you came in at a moderate weight, 30 days might do it, but for an individual who is at the extreme end of the spectrum, 30 days might not be long enough."
The UNC program has 12 slots in its partial treatment program and 10 in the inpatient program. One day of inpatient care runs $1,700.
"The cost of treatment can cripple a family," Toles adds. "I see people plopping down a payment of $20,000 to get admitted, and I know that that money for individuals and families represents life savings."
"Even those who look and feel deceptively well may have heart and blood pressure irregularities, putting them at risk for sudden death. Bulimics and anorexics may have electrolyte, fluid and mineral imbalances, heart and stomach problems and metabolic disorders. Despite being of normal weight, a bulimic may be starving and severely malnourished.
Studies of eating disorder patients have proven that shorter periods of treatment lead to high readmission rates. And the expenses of treatment can prompt insurance providers to require that the patient be discharged, regardless of the American Psychiatric Association's care guidelines.
"We send in charts for review, and even though we can show by the APA standard that a patient needs care, the insurance provider denies coverage," says Bannister of Carolina House, where inpatient care costs $1,500 per day.
While Bannister recommends that patients fight for coverage from their insurance providers, he emphasizes that many times the individuals entering Carolina House are malnourished and cognitively impaired—incapable of fighting.
"Too many times, we are appealing with the insurance provider while a person is literally dying before us," Bannister says.
Mental health coverage depends primarily on an individual or employer group plan. According to customer service representatives at Blue Cross Blue Shield, individual plans guarantee more coverage in return for a higher monthly premium. However, 30 days of inpatient care is BCBS' maximum. The representative told the Indy she knew of no situations in which the company covered more than 30 days.
Toles says self-employed people often have the lowest level of benefits: "Two thousand dollars a year max, and that would get the patient less than two days of treatment."
A representative for the state employees health plan said it allows 26 therapy sessions, but inpatient coverage would depend upon the plan accompanying the state job. Aetna Inc. does not offer a mental health plan for individuals buying insurance in North Carolina.
Lambert was fortunate. On her way to receive her week of treatment, she received a call telling her that an anonymous donor had put up $50,000 for her to enter the residential program at the Carolina House. She spent 50 days in residential care—at a cost of $75,000. Without the donation, Lambert says, she knows she would have died from her illness. "It saved my physical life, my emotional life, and my spiritual life."
Too many individuals can't get treatment—or are given just days to get "fed"—without having time to address the underlying causes of the illness.
This catch-22 has prompted eating-disorder advocates and activists to lobby for legislation in the form of FREED. If passed, it would be the first comprehensive eating disorder bill that addresses research, improved training of medical professionals and requirement of insurance companies to reimburse eating disorder treatment in the same way as physical illnesses.
Kathleen MacDonald, FREED policy assistant, says the bill has not met with opposition by the insurance industry.
"Quite frankly, it wouldn't make sense for them to do so—speaking in terms of both moralistically, as well as in the cost-benefit sense," MacDonald says. "Many sufferers have become what are referred to as "revolving door patients," costing the insurance company repeated use of funds, and worse yet, many have lost their lives as a result of lack of care."
It is uncertain exactly how many individuals have died from eating disorders, but Lambert was nearly one of them. Shortly after she graduated from Duke University in May 2008, Lambert relapsed, using a lack of money as an excuse for not getting help.
Finally, she decided to kick the illness—even if that meant going into debt.
Lambert spent 122 days at the Carolina House; she is now in her 10th month of recovery. Today Lambert is anticipating being ordained into the Metropolitan Community Church, the second nongay minister to do so in the past 40 years. Saddled with debt, she works two service jobs to pay her bills. "At this point, I have probably paid around $35,000-$40,000 on treatment out of pocket," Lambert says. "My life's savings."
Initially, Lambert's father didn't understand her spending that much money on treatment, she says.
"I only had one answer for him. I said, 'Dad, I could have saved my money to pay for a coffin and funeral expenses. Or I could use the money to regain my life. I've made my choice.'"