Eating Disorders Treatments: Rarely Covered Health Care

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Eating Disorders Treatments: Rarely Covered Health Care

House of Representatives Briefing in the U.S. Capitol: July 15, 2003

Congressional Briefing on Eating Disorder Treatments: (l. to r.) Jeanine Cogan, Chris Johnson, Rep. Patrick Kennedy (D-RI), William Davis, Raine Weiner-Hollies, and James Sinclair.

Featured Speakers
(click on titles to read text).

The Revolving Door in Residential Treatment: The Consequence of Insurance Practices
William N. Davis, Ph.D., Vice President of Research for The Renfrew Center Foundation, and Vice President of Outpatient Program Development for The Renfrew Center, Philadelphia, Penn.
The Juggling Act: Hospitalization, Patient Health and Insurance Coverage
Chris Johnson, M.D., Medical Director of the Eating Disorders Institute / Park Nicollet, St. Louis Park, Minn
Mission Impossible: Getting Needed Services for Patients in Private Practice
Raine Weiner-Hollies, Ph.D., Clinical Psychologist, Eating Disorders Center, Rockville, Md.
The Long Search for Help: A Fatal Journey
James Sinclair, Statistician, Bureau of Labor Statistics, Washington, D.C.
Bereaved husband of a lobbyist who lost her battle with an eating disorder
Finding Help for Mental Health Problems
Rep. Patrick Kennedy of Rhode Island

We thank Representative Jim Ramstad (R-MN) and Representative Patrick Kennedy (D-RI) for hosting this briefing.

This briefing is made possible by the generous support of the Eating Disorders Institute, Park Nicollet Health Services, St. Louis Park, Minn. (Click here to visit the Eating Disorders Institute.)

Additional financial support was donated by EDC Board Member Mary Gee in memory of her mother, Wai-Kwan Ho Gee.

Press Release

(Washington, D.C.) - A U.S. Congressman, legislative aides, health professionals, and consumers met in the U.S. Capitol July 15 to learn more about access to care for eating disorders treatment. The congressional briefing, "Eating Disorders Treatments: Rarely Covered Health Care," was sponsored by the Eating Disorders Coalition, Rep. Jim Ramstad (R-MN) and Rep. Patrick Kennedy (D-RI).

The briefing offered national policymakers the opportunity to learn about effective treatment methods in residential centers, hospitals, and in private practice. The briefing also included a personal perspective from a husband who's wife recently died of complications from Anorexia Nervosa.

Rep. Patrick Kennedy addressed the crowd in the packed briefing room at the Capitol. He described the difficulties and frustrations his family has had finding qualified physicians and counselors over the years, and why mental health parity is a passion.

Kennedy spoke about how finding qualified professionals is often difficult, even for savvy, well-connected health care consumers. He was particularly focused on the importance of better medical training for primary care physicians who could identify eating disorders and get patients into the most effective treatment programs as soon as possible.

Dr. Chris Johnson, medical director of the Eating Disorders Institute in Minneapolis, talked about effective therapies in a hospital setting and about some of the barriers presented by current health care reimbursement practices. Dr. Bill Davis, vice president of The Renfrew Center, spoke about residential treatment and research and various levels of care. Dr. Raine Weiner-Hollies, a clinical psychologist in private practice, described how her time is spent in endless discussions with managed care companies.

One of the most difficult challenges for people with eating disorders, their families, and providers is ensuring health insurance reimbursement for appropriate and long-term treatment. The briefing speakers outlined their struggle to provide needed and appropriate care for their patients within a health care system that fights them tooth and nail. Dr. Raine Weiner-Hollies gave a wrenching example, describing a client who almost died after her health insurance company twice refused to authorize hospitalization for her despite the fact that she was deathly thin and suicidal. (For more on this terrible story, read, Dr. Weiner-Hollies speech.) These insurance practices and the lack of coverage contributes to the high mortality rate associated with eating disorders. In fact anorexia has the highest mortality rate of any mental disorder, upwards of 20%.

Marc Lerro, executive director of the EDC said, "We tried to get representatives of the health insurance industry on the panel, but they declined to send a representative for this forum. We want to expand this discussion, and we want them at the table."

Earlier this year, Rep. Ramstad toured the Anna Westin House, an eating disorders treatment center in his district. Accompanying him was briefing panelist Chris Johnson. Ramstad is a cosponsor of the Senator Paul Wellstone Mental Health Equitable Treatment Act (H.R. 953), introduced by Rep. Kennedy on February 27, 2003.

The EDC used the July 15 event as an opportunity to personally deliver briefing invitations and EDC policy recommendations to Capitol Hill offices of each U.S. Senator, and U.S. Representative. EDC volunteers also delivered materials to the five non-voting delegates in the House of Representatives (representing U.S. citizens in American Samoa, the District of Columbia, Guam, Puerto Rico, and the Virgin Islands).

This is the second of three congressional briefings on eating disorders planned for 2003.

The Revolving Door in Residential Treatment: The Consequence of Insurance Practices
William N. Davis, Ph.D., FAED, Vice President of Research for The Renfrew Center Foundation, and Vice President of Outpatient Program Development for The Renfrew Center, Philadelphia, Penn.

PENNY WISE…POUND FOOLISH: HEALTH INSURANCE AND INTENSIVE TREATMENTS FOR EATING DISORDERS

Introduction

Today my purpose is to discuss current insurance practices as they relate to the intensive treatment of eating disorders.I have two goals: (1) to demonstrate the insurance industry is doing a disservice to those suffering from eating disorders, as well as to their families and professionals working in the field; (2) to offer several recommendations that will enhance the availability and the effectiveness of intensive treatments for eating disorders.

Effective Treatment for Eating Disorders

To begin with, I want to emphasize that there is effective treatment for an eating disorder; people can and do recover.
At this time, everyone agrees – both the insurance industry and clinicians in the field – that an eating disorder is best treated by individual specialists and specialist facilities.
Insurers continually seek out specialty providers for treatment.
Professionals are unanimous that treatment requires specific knowledge.
Current research suggests that the following factors are associated with recovery:
Length of illness: the shorter the duration before treatment, the more likely someone will recover.
Diagnosis: anorexics are less likely to recover than bulimics or binge eaters; and when there is more co-morbidity – other psychiatric disorders in addition to the eating disorder – recovery is less likely.
For anorexics, the percent of ideal body weight (IBW) at the beginning and especially at the end of treatment is strongly associated with recovery. At least 90% IBW at discharge from treatment is most likely to ensure recovery.
Level of family pathology and disorganization is often related to recovery – more functional families support better recoveries.
Treatment retention – the more someone stays continuously in treatment, the better the chance of recovery.
Very important: data suggests that attaining recovery prevents relapse, i.e. getting better means you are likely to stay better.

Treatment Options at The Renfrew Center

The Renfrew Center is unquestionably an expert on effective treatment
It is the nation’s largest treatment center for eating disorders. Treated more women (30,000+) over a longer period of time (18 years) than any other facility.
Currently, Renfrew offers the following treatment options.
Most intensive, Residential Treatment - 24/7 care.
Day/Transitional Living Treatment is essentially the same as residential, except most often the Day portion is covered by insurance, while the TL is out of pocket.
Day Treatment is five days a week, most often with two meals and with six hours of treatment programming.
Intensive Outpatient Treatment (IOP) is usually three evenings a week, for three or four hours of programming each night, including one meal.
Less intensive services include traditional outpatient therapies such as individual, family and group, and support groups
Note that the treatment options provide a range of intensity. Each represents a level of care, and the Center is organized such that patients can either “step-up” to a higher level of care or “step-down” to a lower, less intense level of care
Taken together, the options form what is called a “Continuum of Care.”

The Continuum of Care for Eating Disorders

The continuum of care is common in eating disorders treatment today.
Its development has been driven, in part, by the advent of managed mental health care. Managed care refers to a system developed by insurers to oversee or manage the way in which insurance benefits are utilized by insurance subscribers.
Theoretically, and ideally, managed care offers an opportunity to carefully and thoughtfully match the needs of an eating disordered patient with the appropriate use of available treatment resources. For example, a particular individual is assessed to need a particular level of care. Then, clinicians and managed care representatives work together to help the patient in the most effective way possible - both clinically and economically.
In practice, managed care is most often an effort to reduce costs – to reduce the level of treatment intensity or to end the treatment altogether, thereby reducing the treatment expense – with little attention paid to the particular needs of a patient and the recommendations of clinicians.
At this time, most managed care representatives and most clinicians are in constant conflict over the length and intensity of treatment. Far from a collaboration, it is much more a battle.

Insurance Practices and Intensive Treatments

Regarding managed care, it is crucial to understand there is a difference between insurance coverage or benefits and access to the coverage or benefits.
Managed care is a system devised by insurance companies to control access to benefits. So, regardless of the benefits that are stated in an insurance policy, it is necessary to be able to access them before they can be used.
Thus, managed care representatives are agents of insurers hired to regulate access to benefits.
Treatment centers must negotiate with managed care representatives in order to offer intensive treatment to patients. Again, in spite of the benefits a policy stipulates, they can’t be used unless and until they are authorized by managed care.
Since managed care is primarily an effort to contain and reduce the cost of intensive treatment, it is not surprising that at Renfrew and other eating disorders facilities treatment intensity is associated with:
More frequent reviews, to keep tight control over the duration of treatment.
More secretiveness about managed care decisions, to minimize clinician influence over reviewers and thus retain maximum control over length of treatment.
- The concept of “medical necessity” is used by managed care to establish whether or not a particular treatment or level of care is appropriate for a particular patient.
- Many times, most often the definition of medical necessity used by managed care is kept vague, as if it is proprietary information.
More frequent conflicts between reviewers and clinicians.
Consequently, the more intensive the treatment:
- The more difficult it is to receive authorization for continued stay.
- The more the average length of stay is reduced. Residential is less than Day/TL, which is less than Day, which is less than IOP.

Short Term Effects of Managed Care

The beginning of appropriate intensive treatment is often delayed until sufficient need (medical necessity) has been established.
Once intensive treatment starts patients frequently become anxious about what “their insurance will say,” interfering with treatment and exacerbating symptoms.
Clinicians are frequently exasperated by managed care decisions, provoking resentment, frustration and burnout; as a result, conflict with managed care can interfere with the effectiveness of treatment interventions.
Due to premature and/or rapid discharges from one level of care to another, or from one treatment facility to another patients can experience multiple changes in providers and/or treatment locations, interfering with and confusing the process of ongoing treatment.
Intensive treatment can be prematurely interrupted when continuing access to benefits is completely denied, a result of “insufficient” medical necessity.
Families are frequently not prepared for the abruptness of managed care decisions, to discharge from treatment altogether, or to “step down” from one level to another, causing undue anxiety and dysfunction.
Patients are at greater risk to drop out of intensive treatment prematurely, due to uncertainty about managed care decisions and discontinuities in the treatment process.

Managed Care and Effective Treatment

A comparison of the short-term effects of managed care and the factors that are associated with recovery suggest that managed care practices can serve to undermine the process of treatment and prolong recovery.
So, for example, if there are delays in the start of intensive treatment, this will increase the duration of illness, which may lower the chances for recovery.
Similarly, if patients become anxious, and providers frustrated by the uncertainties surrounding managed care reviews, this may interfere with ongoing participation in treatment.
Also, when managed care practices contribute to patients dropping out of treatment, this obviously makes it more difficult to achieve recovery
And very important, when anorexic patients are forced to leave intensive treatment before they can reach a weight that is close to their IBW, their chances for recovery are diminished.
Finally, when families are disrupted by managed care decisions this makes it more difficult to offer support to the family member who is eating disordered, which in turn tends to interfere with the process of recovery.

Long Term Effects of Managed Care

Over time managed care tends to reduce both the quality and quantity of care because it increases staff frustration, burn out and turnover, decreases the average length of stay and diminishes the richness and intensity of clinical programming.
The short-term focus on reducing the length of any one stay in intensive treatment tends to create a pattern of multiple treatment episodes.
As a result of reduced quality and quantity of care and the tendency to force repeated treatment interventions, managed care inadvertently fosters chronic psychological and medical illness, which may contribute to the extremely high rate of mortality among anorexic patients (up to 20%).
In turn, chronic illness vastly increases the direct costs (medical and psychological treatments) and the indirect costs (reduced work, school and family capacities and productivity) of eating disorders.
Not to mention the enormous, ongoing stress and emotional toll that an eating disorder exacts from everyone it touches.

Managed Care and The Renfrew Center

The two columns of pre and post managed care refer to the experience of the residential treatment program at The Renfrew Center, prior to 1994, before the beginnings of managed care, and during the last three years, when managed care practices have had a profound effect on as many as three out of every four Renfrew residential patients.
There is a dramatic drop in length of stay, a 250% increase in Renfrew readmissions to residential treatment and a 500% increase in prior hospitalizations among incoming residential patients in the managed care period as compared to the pre managed care era.
The COC after length of stay in the managed care period refers to the total number of days in Renfrew intensive treatments. The actual amount of residential treatment only is about 15 days, or 1/3 the amount of treatment Renfrew was able to provide before managed care.
In addition, there is evidence to suggest that patients entering Renfrew now are in more medical/psychological crisis than they once were, and that they are more severely disturbed – in terms of both eating disorders symptoms and additional psychiatric problems.
Moreover, more patients are leaving residential treatment against medical advice than they once did.
In the post-managed care era Renfrew has been forced to reduce the intensity of its clinical programming and it has experienced a tremendous increase in staff turnover.
Although patients still assess their residential treatment experience as very helpful to their recovery, there is no question but that the Renfrew “culture” - the atmosphere that pervades the patient and staff community is less coherent, more frantic and disorganized than it was ten years ago.

Pound Wise…Future Recommendations

What needs to be done, immediately, to begin to solve some of the problems that managed care practices have brought to the intensive treatment of eating disorders?
And what can be done to promote positive long-term consequences?
First, as the Eating Disorders Coalition has advocated, eating disorders must be included in the parity legislation now before Congress, and the entire bill should be passed into law as soon as possible. This is a necessary step towards ensuring that eating disorders patients and their families will have an opportunity to receive all the treatment they deserve.
Perhaps just as important however, we must find a way to induce all insurance companies and their managed care representatives to publish their criteria for admission into, continued stay in, and discharge from intensive treatment programs for eating disorders. Furthermore, a standardized set of criteria should be devised, with input from clinical experts, so that there is a common understanding of medical necessity for the various levels of intensive treatment throughout the country and the insurance industry.
In other words there is an urgent need to force managed care companies to expose and standardize their definitions of medical necessity so that everyone – patients, families and providers – will understand what is likely to be the course of an intensive treatment.
As a result, treatment course is likely to be more predictable and we should have a genuine opportunity to forge a collaborative relationship with managed care representatives – with a primary focus on the health and well being of eating disorders patients.
Another extremely important initiative, with profound implications for the future of intensive treatment is research on effective treatments and treatment outcomes. This may be the most significant step we can take. If we have good information about what helps to ensure recovery, on both a short and a long term basis, we have two things:
- Hope for those who suffer from eating disorders.
- Hard evidence to present to insurers that this or that treatment intervention for this or that amount of time is essential to eating disorders recovery.
Health care parity for eating disorders, standardized definitions of medical necessity and substantial research on intensive treatment for eating disorders will only happen in the context of increased public support. So, finally, we must work to acquaint everyone with the very serious and potentially deadly nature of eating disorders.

William N. Davis, Ph.D., is Vice President of Research for The Renfrew Center Foundation and Vice President of Outpatient Program Development for The Renfrew Center. Dr. Davis has worked for several decades to expose and resist the socio-cultural forces that contribute to anorexia and bulimia. He received his doctorate from Harvard University and a certificate in psychoanalysis from the William Alanson White Institute in New York City.

Dr. Davis founded and directed the Center for the Study of Anorexia and Bulimia, one of the first outpatient treatment organizations for eating disorders in the country. He is a founding member and past president of the National Eating Disorders Association and a founding member of the Academy of Eating Disorders. Dr. Davis has contributed significantly to the development of the feminist treatment philosophy at The Renfrew Center, a perspective that makes it unique in the eating disorders field. He is editor of The Renfrew Center Foundation Perspective and is a committee member of The Renfrew Center Foundation conference, the largest annual professional conference for eating disorders in the country. Currently, he co-edits The Renfrew Working Papers, a series of articles written by experts in the field.

The Juggling Act: Hospitalization, Patient Health and Insurance Coverage
Chris J. Johnson, M.D., Medical Director of the Eating Disorders Institute / Park Nicollet, Minneapolis, Minn.

Members of Congress, Representatives Kennedy and Ramstad, and the Eating Disorders Coalition, thank you for the privilege to speak with you today about effective treatment for eating disorders and the barriers that patients face in getting adequate treatment. The Eating Disorders Institute where I work is part of Park Nicollet Health Services in Minneapolis. At the Institute, we are fortunate to offer patients a full continuum of care for the treatment of eating disorders. This includes an inpatient and day hospital program, an intensive outpatient and traditional outpatient program, and also the Anna Westin House, a longer-term residential program. Having all levels of care is a great benefit to our patients and allows flexibility for patients to move between the various levels to best support their recovery. We see approximately 500 new patients each year for initial assessment of an eating disorder. Of this group, approximately 150 are admitted directly into our inpatient program. An additional 75 patients are admitted from other regional hospitals. The most frequent criteria for inpatient admission are a combination of low weight and medical instability. Other criteria include the intractable presence of eating disorder symptoms such as bingeing and vomiting or laxative, diuretic and diet pill usage.

I am also fortunate to practice in Minnesota, where many of our patients under state law have insurance that offers the same coverage for the treatment of mental health conditions as for medical ones. The major health plans have come to recognize that providing access to adequate care for the treatment of eating disorders is not only the right thing to do, but is required of their business. Unfortunately, these changes did not come about through spontaneous enlightenment in the offices of health plans. They came about through legislation and litigation. Sadly, it took the death of a wonderful young woman, Anna Westin, who was denied adequate treatment by her health plan to bring about much of this change. I must tell you that despite what has been done in Minnesota; about half of the patients who present to the Eating Disorders Institute still do not have adequate coverage for the effective treatment of their illness.

Eating disorders are serious life-threatening illnesses that are characterized by a chronic relapsing course often requiring several years of treatment. Although classified under mental health diagnoses, they are associated with significant medical consequences. They carry the highest rate of premature death of any mental health diagnosis, with a 10% or greater mortality associated with anorexia nervosa. They also possess the highest rate of short- and long-term physiological complications to the body. The causes of eating disorders are multi-factorial and not unlike the multiple factors involved in other chronic illnesses, such as diabetes and heart disease. Unique to eating disorders, the illness manifests itself early in life, showing up in 70-80% of cases before the age of twenty. With intervention and treatment that is early and aggressive, these adolescents and young adults, predominantly young women, can recover and be free of the disorder. It does not need to become a lifelong illness. Unfortunately, treatment that is delayed or is limited to less intensive settings or for too short a duration results in a cycle of relapse that entrenches the disorder.

So what is effective and adequate treatment for eating disorders? It is treatment that allows the patient to access the needed level of care or program structure to support them in their recovery at a particular point in time. We know that the individual’s struggle with the eating disorder will be challenging. There will be periods of progress that sometimes stall or a relapse will occur, then to be followed by further progress toward the goal of recovery. We know that the ability to move back and forth between levels of care is essential to allow placement of the patient in the most effective setting. Until restored to at least 90% of healthy weight, important cognitive elements of insight and reasoning remain impaired and limit participation in essential therapy. All patients do not need hospital care. However, the ability to access such care when needed is essential. Historically this has been denied to many patients, as it was to Jessica (not her real name) a 17 year old whose weight had fallen to 96 lbs. from her usual healthy weight of 126. While hospitalized for two weeks, Jessica was able to restore 9 lbs., but was still less than 85% of her body’s healthy weight – her cognition remained clouded and dominated by eating disorder thoughts. A non-physician reviewer with her insurance company determined that because of improvements in her blood pressure and pulse her illness no longer required inpatient treatment and inpatient coverage was terminated. Jessica’s parents immediately asked for a review of this decision by a physician with the insurance company. This could not be arranged for two days and once completed, inpatient coverage was again denied. Jessica was discharged to a day hospital program and eventually to an outpatient program where she has continued to struggle to restore weight. Overzealous and uninformed managed care guidelines that prompt reviewers to move patients to “less costly levels of care” at the first signs of improved laboratory tests or cardiac status miss the essential factors that maintain the eating disorder.

At the Eating Disorders Institute, we have found the combination of early inpatient admission with an adequate length of stay to allow for restoration of at least 90% of the individual’s healthy weight is essential to reduce relapses and provide the patient with the best chance for recovery. In recent years the major health plans in Minnesota have become receptive to guidelines that allow for earlier and more intensive treatment. This is allowing our team to utilize the various levels of care more promptly to meet patients’ needs. Specifically, we are able to intervene when a patient is struggling in the outpatient setting, her weight declining or her body showing early signs of medical instability. Is this type of care more costly? We believe not, and our data shows trends toward lower lengths of inpatient stay for these patients, not because of increased pressure by health plans to limit stay, but because we are able to intervene with treatment at an earlier stage. In most cases this is followed with the partial or day hospital program that maintains a high level of structure and intensity in treatment and allows patients to continue to restore weight to 100% of their healthy goal before transitioning to an outpatient program.

So if everything is going so well in Minnesota, why am I here today? Yes, the situation has improved for about half of our patients – those whose insurance coverage is regulated under the state’s mental health parity law. They are able to receive coverage for adequate treatment for eating disorders and other mental health conditions and the Minnesota based health plans have learned through litigation that inappropriate denial of such benefits is costly. The other half of our patients still struggle to receive coverage for adequate treatment.

Approximately one third of our patients are covered under ERISA self-insured employer plans that escape state regulation. These plans typically limit benefits to lower levels of coverage with higher deductibles and co-pays, or limit inpatient care to 30 days per year or a 60-day lifetime maximum. Paul (again, not his real name) is a 14 year-old suffering with anorexia nervosa - only 5% of patients with anorexia are boys or men. His weight had dropped 25% below a minimum normal level for his age and height. His insurance coverage limited mental health inpatient benefits to only 30 days. Previously, he had been admitted to another hospital for a stay of 12 days, so when he came to us, he had only 18 remaining days of coverage. He made steady progress, but at the end of those 18 days his weight was still low and vital signs not normalized. Requests for extension of benefits were declined. His parents chose to self-pay for an additional 10 days of inpatient treatment before he was ready for discharge to the day hospital program. He completed that program and after 30 days his weight was restored to 95% of his goal. Patients and families with limited mental health coverage, like Paul’s, juggle the decision to leave inpatient care too early or self-pay to receive the care they need.

Another 10–15% of our patients have insurance where the insurer is not based in Minnesota. I think their situation is most similar to what exists for the majority of Americans – limited and inadequate coverage with frequent denial of needed admission to more intensive settings. Many of these health plans continue to utilize outdated managed care guidelines that indicate the expected length of stay for treating anorexia should not exceed 4 days. Despite hours of work by care managers and physicians trying to convince the insurance reviewers of the necessity of care, the needed care is frequently denied. A short while back, a 20-year-old woman with an abnormal ECG due to her state of malnutrition was denied inpatient eating disorder treatment by her insurance company. Their recommendation was that she be put on a cardiac floor until the problem with her heart was cleared up and then discharged to an outpatient program.

So despite some very positive changes that have happened in Minnesota over the last 2 years – and I do want to say that our local health plans have come a long way in understanding what adequate treatment is for eating disorders – many of our patients still struggle, and they need your help. So, on behalf of the hundreds of patients at the Eating Disorders Institute and the millions of other Americans who do not have insurance coverage that allows for adequate treatment of eating disorders I ask you to help with your active support of the full mental health parity bill as written – to bring it to the floor and to pass it. This bill needs to be inclusive of all mental health diagnoses including eating disorders. Analysis had shown that mental health parity does not significantly increase insurance premiums and we do know that getting patients the right treatment in the right setting with the right providers saves money.

Mission Impossible: Getting Needed Services for Patients in Private Practice
Raine Weiner-Hollies, Ph.D., Clinical Psychologist, Eating Disorders Center of Potomac Valley Psychotherapy Associates, Rockville, Md.

As a clinical psychologist specializing for 15 years in the treatment of eating disorders, I have experienced the slow and steady deterioration in patients’ access to effective, life-sustaining care due to increasing limitations imposed by insurance companies. While research indicates that patients can successfully recover from eating disorders, this cannot be achieved without intensive, well-monitored, comprehensive treatment. Denial of a treatment plan can cost more than money, it can cost lives.

Sue was a 19-year-old college student at the time I saw her in the early 1990s. She was a straight A student on a full athletic scholarship as a runner. By the time she began treatment with me, Sue was 5’2” and weighed 71 pounds. She had been amenorrheic for four years and had osteoporosis and stress fractures in both legs. She had already been to several other therapists who were listed as providers on her HMO. She was unable, however, to find someone on her plan with a specialty in the treatment of eating disorders. This led to her mother’s decision to pay out-of-pocket for her sessions with me, and I agreed to reduce my fee. She had been suffering from anorexia since the age of 13 and began purging, as much as five times a day, when she was 16. Despite her low weight and the pain in her legs, she refused to stop running for fear of losing her scholarship and gaining any weight.

I put a therapeutic plan into effect, and within several months we saw some improvement. She was started on anti-depressants, as prescribed by her physician, and seemed more hopeful about her future. She was eating a little more, purging a little less and, with the nutritionist’s support, was able to gain three pounds. The pain in her legs worsened, however, and Sue was told by her coach that she would no longer be permitted to run on the team. She was devastated.

Shortly after meeting with her coach, Sue described in a session with me that she was tired of living with her eating disorder and seeing herself as a “hopeless case.” I was becoming increasingly concerned about her emotional and physical safety. Her physician was equally worried. We then discussed her need for hospitalization or residential placement. Sue agreed to go to an inpatient facility, although she was concerned that she would be found “incurable.” I called her insurance company for pre-authorization and was told that she would have to be evaluated by a psychiatrist participating in her HMO. Unfortunately, there were no psychiatrists specializing in eating disorders, so she was referred to a random provider. I left numerous messages to speak to him about Sue but never received a call back. The insurance company’s professional informed Sue that hospitalization or residential treatment was denied due to the lack of “medical necessity.” No contact was made with Sue’s physician or me.

When I saw Sue the next day, she had not eaten in 24 hours, telling me that she must be even fatter than she thought or the psychiatrist would have hospitalized her. She said, “I’m not even good at being anorexic. I’m a complete failure at everything.” She threatened to commit suicide. I immediately called her insurance company, stating in even stronger terms that Sue was in imminent danger. I was told that I must be incorrect as their psychiatrist had disagreed with me. A battle ensued, in which I was eventually permitted to speak with “a supervisor.” She told me that the best she could do was authorize a second evaluation with another psychiatrist. This occurred the following day. Unfortunately, the second psychiatrist agreed with the first one despite my pleading with him.

Late that evening, I received a phone call from my answering service. It was Sue. She informed me with slurred words that she had taken every medication she could find in the house. Thanking me for my help, she hung up before I could say more than a few words. I called her back, but her mother told me she was not home. I then contacted the police. Sue was found at 2:00 a.m. walking down a snowy residential street, naked. She was rushed to the hospital and barely survived. When her medical condition was stabilized, Sue was transferred to a psychiatric hospital for one week, day treatment for two weeks, and then to once weekly individual psychotherapy with a therapist connected to the hospital.

Several years later, I received a phone call from Sue’s mother. She told me that Sue had died from complications of her eating disorder. She wanted to know if I was aware of any forums in which she could speak to insurance representatives, professionals and parents about her daughter’s battle with her anorexia and with her HMO.

Sue is one of numerous patients with whom I have worked in which the treatment was negatively affected by the limitations dictated from insurance companies. People suffering from anorexia, bulimia, and binge eating disorder struggle with a myriad of emotional and life-threatening medical issues. There is no quick fix. Patients typically require multiple types of care including individual psychotherapy, nutritional counseling, medical monitoring, psychopharmacological assessment, and family therapy. The healthcare system as it currently exists does not allow for this multi-dimensional treatment plan, particularly given that 1) cost cutting measures are a major focus in determining authorization for therapy, and 2) the mental health parity laws have not as yet been passed. While the American Psychiatric Association has delineated criteria for this multi-dimensional continuum of care in the treatment of eating disorders, many insurance companies refuse to authorize payment for it. As a result, increasingly fewer people are able to recover and the chances of relapse are high. I believe this system is not only an unethical one, but it is also a dangerous one given the high mortality rate of patients with eating disorders.

Eating disordered patients tend to deny that they are medically at risk. For those suffering from anorexia or bulimia, the denial is so strong, that no matter how low their weight dips, they are convinced they are fat. Therefore, when reviewers at insurance companies deny treatment, patients take this information as proof that they are not sick enough or thin enough. They often become determined to eat less and purge more. Patients with binge eating disorder are usually taken even less seriously. Despite the fact that the research
has found obesity to be an “epidemic” (United States Department of Health and Human Services, 2001) and that over-eating in response to depression and anxiety is common, third party payers are even more likely to refuse reimbursing patients with binge eating disorder. How can a person reviewing a case of someone whom they have never met be allowed to determine another human being’s future? This is how our healthcare system works today. It is an abomination.

Private practice is not what it used to be when, as in medical practice, patients were given the treatment deemed necessary to help them recover. Forms of treatment, including group therapy, family therapy, couple therapy, medication assessment and nutritional counseling, could be recommended as needed. If necessary, inpatient and day treatment stays of 30 to 60 days or more could
be part of the plan for those needing more intensive care. Those days are long gone. Many insurance companies allow only 20 to 26 out-patient sessions per year and reimburse only a small percentage of what they call the “usual and customary” fee (around 50% or less of what is the actual average fee per session). Insurance companies require therapists to prove medical necessity for
further treatment, which involves completing lengthy treatment forms and receiving frequent denials. Privacy is thrown out the door when third party payers require therapists to give intimate details about patients; information that was once kept confidential. When inpatient stays are authorized, patients are generally discharged within a very short period of time and against the recommendations of the hospital or residential treatment facility. As a result, patients who are now seen in private practice are more medically at risk and are receiving treatment not nearly frequently enough given the severity of their symptoms. They are also faced with the financial and emotional stress resulting from having to fight for their treatment.

I have made significant changes in my practice to contend with the changes in our healthcare system. Patients now pay me at the time of each session and are reimbursed when possible by their insurance companies at whatever amount they can garner. I am no longer a provider for any HMOs or PPOs. I could not survive financially on the increasingly reduced fees for service. In addition, working with managed care companies became an endless battle, one which I usually lost, as I tried to convince whomever answered the phone to allow me to treat my patients in the ways my experience told me were optimal for their recovery. Unfortunately, these battles continue. Even though I am not a provider on these plans, I am still required to fill out increasingly longer and more frequent treatment forms about my patients. This has led to a great deal of energy expended on my part in attempting to complete paperwork and plead with insurance companies when my time would certainly be better spent helping my patients.

In the years I have worked with eating disorders, I have seen so many teenagers and adults leave therapy as healthy, productive, energetic, and optimistic people. Recovery means providing each patient access to the treatment modalities and the time-frame needed to help that individual. Psychotherapeutic interventions cannot be separated from and deemed less valuable than medical
interventions, and therefore the parity laws must be passed. Psychotherapy cannot be dictated and formulated by insurance evaluators. This is a dangerous policy. Do only those who are wealthy enough to afford treatment have the right to work toward a full recovery? This would be immoral, prejudicial, and criminal.

It was an honor to speak with all of you in the Capitol today. Many of my patients know that I am here and are cheering me on. During a time in which both therapists and patients have been made to feel powerless by a healthcare system which fails us, today has brought a brief period of empowerment. The existing inequity needs a legislative remedy. I thank you for listening.

The Long Search for Help: A Fatal Journey
James Sinclair, Bureau of Labor Statistics, Washington, D.C.
Bereaved husband of a lobbyist who lost her battle with an eating disorder

(Washington, D.C.) - James Sinclair is used to dealing with facts and figures in a large government bureaucracy. As an employee of the U.S. Bureau of Labor Statistics, he is used to events following a pattern. But when he spoke at the U.S. Capitol to a Congressional Briefing organized by the Eating Disorders Coalition, his story was about mysteries, emotions, and loss.

Sinclair's wife of 30 years, Joanne, died from an eating disorder in December.

"Joann had two advanced degrees. She did grassroots political work for IT companies. She had a very active life, and when she was under a lot of stress, she would respond by not eating. Her weight would fluctuate, and she'd lose 10-15 pounds."

Sinclair was speaking to a packed room in the U.S. Capitol. Legislative aides and a member of Congress listened as he described a subtle, long-term decline in his wife's health and the difficulties the couple had finding doctors in the nation's capital trained to deal with her eating disorder.

"I'm a government employee," Sinclair said. "I probably have the best possible health coverage."

"When we married 30 years ago, Joann weighed 120 pounds. Over the course of their marriage, Joann's weight declined to 67 pounds. She looked terrible, and a lot of people just wouldn't acknowledge how bad she looked when her weight was really low."

After years of searching for professionals who could help with his wife's medical and psychological needs, James and Joann believed they found a good psychiatrist in 2001. Even as the couple tried to focus on improving Joann's health, complications from extreme weight loss started effecting Joann's cognitive abilities. James noticed that his wife started having difficulty keeping track of time. She was running late for meetings and forgetting things.

Late last year, Joann started fainting because of low blood sugars. Then, in early December, her blood sugar levels dropped while she was asleep and she slipped into a coma while in bed, next to her husband.

Sinclair learned about the EDC in May when the coalition was featured on ABCNews.com in a story about older women with eating disorders. Sinclair called the coalition and asked how he could help. EDC Executive Director Marc Lerro said, "Tell your story at our next Congressional Briefing." Sinclair jumped at the chance to talk about his wife's experience.

"She didn't want to die. She wanted to live."

Finding Help for Mental Health Problems
Rep. Patrick Kennedy of Rhode Island

(Washington, D.C.) - Rep. Patrick Kennedy told a packed briefing room at the Capitol about the difficulties and frustrations his family has had finding qualified physicians and counselors over the years, and why mental health parity is a passion.

The Rhode Island Democrat spoke for 15 minutes at the end of a Congressional Briefing on Capitol Hill July 15. The briefing was sponsored by the Eating Disorders Coalition, Rep. Kennedy, and Rep. Jim Ramstad of Minnesota.

Patrick Kennedy is the son of U.S. Senator Edward M. Kennedy (D-Mass.) and Joan Bennett Kennedy. Health care policy has been a priority for Kennedy family members serving in the U.S. House and Senate. In June the National Mental Health Association presented its Lifetime Achievement award to Senator Edward Kennedy.