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A Matter of Life or Death:
A Congressional Briefing on
Eating Disorders and Access to Care

House of Representatives Briefing - June 13, 2002

Featured speakers:

Congressional Host:

Representative Ted Strickland

Rep. Ted Strickland


  Kitty Westin

When Your Child Dies of an Eating Disorder:
A Mother's Story

Kitty Westin

On June 3rd, 2000 my 74-yr. old mother, Selina Braden was diagnosed with an aortic anorism. Her anorism was leaking and if it ruptured she would instantly die. She was airlifted to one of the only hospitals in the country that could perform the surgery, the Mayo Clinic, in Rochester MN. As soon as the family was assembled we were told that she had only a 5% chance of living through the surgery and that would be if they could get the “A” team of surgeons together fast enough. She had no chance of survival if the surgery was denied or even delayed. Nobody asked if insurance would authorize the treatment, it was a given that everything would be done to try and save her life and that there would be no delay while waiting for insurance authorization. She survived.

Ten years ago my friend, Leslie, gave birth to her second child and was diagnosed with an often-fatal form of leukemia in the same week. Leslie was only 32 years old. She began an aggressive course of treatment and for the past ten years she has been receiving the treatment her doctors recommended, including many hospitalizations and two bone marrow transplants. Her insurance company has been her partner in fighting her illness, they have joined her in the battle and so far she is winning.

In June 1999 my daughter, Anna Selina Westin was diagnosed with anorexia, a serious and often fatal eating disorder. Our family had what we believed was the best health insurance we could buy. We understood that our family would be covered for both minor and major health problems. We were confident that in the event that someone became gravely ill our insurance would pay for the necessary treatment.

When we brought Anna to the hospital her physician explained that she was critically ill and would die without treatment. She had an abnormal EKG, her liver was beginning to malfunction, her blood pressure and pulse were dangerously low, her body temp was below normal, her weight was 82 lbs, she was too weak to stand and her mental functioning was impaired. We were then informed that we would have to wait to admit her until the insurance company “certified” the treatment. We were still confident that it was just a matter of a phone call. After several hours and the insurance company did not call back we guaranteed payment so Anna could be admitted to the hospital. This was outrageous but we still felt it had to be a misunderstanding and we would clear it up in the morning. The doctor gave the medical information to the insurance company. After two days in the hospital our insurance company told us that her treatment was no longer medically necessary and they would not pay any additional costs. We were horrified. We could not understand why Anna’s care was being questioned.

It was clear that Anna was being treated differently because of her illness, she was being discriminated against. She was as sick as my mother or my friend yet her care was being denied. Our insurance was making medical decisions that were contrary to what her doctors were telling us. We could not believe what we were hearing but at the time we had no energy to fight the insurance company. We were fighting to keep Anna alive and intended to go back and battle the insurance company when Anna’s condition improved. I lived with my daughter’s hopelessness, despair and excruciating physical and emotional pain, I watched as Anna struggled and fought anorexia. I listened as her doctors made treatment recommendations then had to somehow “prove” to the insurance company that she was really sick. I read denial letters from the insurance company that made no sense and were recommending treatment without ever meeting Anna or understanding her particular case.

Anna lost her battle with anorexia and died on February 17, 2000, she was 21 years old. Anna was a bright, vibrant, energetic young woman who had hopes, dreams, goals and a wonderful future. She had a free spirit and is remembered for her loving kindness. When Anna died the foundation of our family was destroyed and we could not imagine how to repair it. However we did make two very important decisions ; 1) to somehow survive this tragedy as a family and 2) to reconstruct our lives and find ways to transform our grief and rage into something positive. We vowed to do everything in our power to fight eating disorders and to hold managed care responsible for denying necessary treatment and limiting access to care for eating disorders and other mental health diagnosis. We made a commitment to be part of the Eating Disorders Coalition to work for mental health parity. We could not bring Anna back but we hoped that by telling our story others could avoid the same tragic outcome.

My journey into advocacy and activism began on February 17, 2000 when we decided to speak openly and honestly about Anna’s life and death. We told our story to MN Senator Paul Wellstone and he became our ally in the fight to end discrimination against people with eating disorders and other mental health diagnosis. He has been tireless in the fight for mental health parity. We also told our story to MN Attorney General Mike Hatch who also joined us in the fight. Attorney General Hatch filed a lawsuit against Blue Cross/Blue Shield of Minnesota (MN) for denying, delaying and withholding eating disorder treatment to Anna and mental health, chemical dependency and eating disorder treatment to countless children and young adults in MN. As soon as the lawsuit was made public hundreds of people called the AG’s office telling very similar stories. His investigation uncovered a pattern and practice of criminal and unethical behavior. He found that insurance companies routinely shift the cost of treatment to taxpayers by telling families to seek help through the juvenile justice system, the foster care system or other social service agencies rather than receive health care treatment paid for by their insurance company. He found documentation in the form of denial letters suggesting that parents consider foster care or giving up guardianship to the state because they were unable to manage their children. Imagine someone asking you to give up your child. This would effectively shift the cost to the county or the state and insurance would not be responsible for treatment.

Mr. Hatch also discovered that insurance was also guilty of denying or limiting coverage for medically necessary treatment by conducting their own reviews without examining the client and making recommendations which often contradicted the judgments and recommendations of the treating physicians. Other tactics to delay or deny treatment was to force subscribers into writing unwarranted appeals, and hiding from subscribers the true conditions, standards and criteria for its denials of coverage. BCBS of MN was forced to pay the state of MN $9,000,000.00 for cost shifting. Our family reached an out of court settlement with BCBS for the “wrongful death.” They did take responsibility for contributing to Anna’s death by denying her life saving treatment.

This is happening all over the country, insurance companies are acting unlawfully and as far as I know only MN has been able to hold them accountable. This has to change and I doubt that it will unless insurance companies are forced to change their policies and practices. I am not confident that this will happen so we need a comprehensive mental health parity bill that will force them to end discrimination against people with certain illnesses like eating disorders. I speak to people every day that desperately need treatment are being turned away. These people have insurance and have paid their insurance premiums faithfully. Like us they trust that when a family member is ill insurance will cover the cost of life saving treatment.

Our sad story is a graphic example of what happens when insurance is allowed to make medical decisions, when they are allowed to withhold life saving treatment and also what can happen when they are held accountable. Was Anna’s life less important than my mother’s or Leslie’s? Of course not, but the fact remains that our insurance company contributed to Anna’s death by refusing her the treatment she needed because they did not see her illness as legitimate or as “real” as an aortic anorism or leukemia. With mental health parity, insurance companies will not be allowed to deny or withhold care and lives will be saved.


  Jim Gray

Not an Adolescent Whim: The Facts about Eating Disorders

Jim Gray, Ph.D.,
American University

Bulimia Nervosa:

  • Description: Bingeing with a sense of loss of control followed by vomiting, laxative abuse, diuretics, extreme fasting or extreme exercise at least twice a week, body image overemphasized in self evaluation. Sometimes the food will be chewed then spit out.
  • Prevalence: 3.5% of the young (15-35 years) female population. (Males represent only 5-10% of eating disordered individuals)

    Anorexia Nervosa:

  • Description: Severe weight loss, fear of fatness, distorted body image, body image over emphasized in self evaluation, loss of period.
  • Prevalence: 0.5% of the young (15-35 yrs.) female population

    Mortality:

  • Anorexia Nervosa has the highest mortality rate of any psychiatric disorder, as high as 20%.
  • Death can occur after severe bingeing in bulimia nervosa as well.

    Treatment can work:

  • Day Hospital treatment can work.
  • Sixteen studies using cognitive-behavioral therapy showed substantial symptom relief and increase in self esteem. Anderson & Maloney, Clinical Psychology Review, October 2001.
  • Anti-depressant medication is useful in treating bulimia nervosa.

    Consequences of Eating Disorders:

    Anorexia Nervosa

  • Heart Muscle Shrinkage
  • Slow and Irregular Heart Beats
  • Heart Failure
  • Amenorrhea
  • Kidney Stones and Kidney Failure
  • Lanugo (Development of Excessive Fine Body Hair on Face, Arms and Legs)
  • Muscle Atrophy
  • Constipation
  • Delayed Gastric Emptying, Bowel Irritation
  • Osteoporosis
  • Death
  •  

    Bulimia Nervosa

  • Electrolyte imbalance, heart arrhythmia, heart failure
  • Teeth erosion and cavities
  • Irritation and tears in the throat, esophagus and stomach
  • Laxative dependence
  • Emetic Toxicity
  • Death


  •   Kathleen MacDonald

    Fighting for Survival: When Treatment
    Becomes a Matter of Life or Death

    Kathleen MacDonald, person recovering from an eating disorder

    My name is Kathleen MacDonald and I am here before you today to talk about the total devastation and destruction an eating disorder brings upon one’s life, and why equal coverage for treatment of eating disorders is so desperately needed.

    It is impossible to condense 60% of my life down into just 10 minutes. I don’t know if I should start at the beginning or begin with where I’ve ended up as a result of having anorexia – which would make the biggest impact on your thoughts? Regardless of where I begin, when I finish, I hope you understand how simply an eating disorder oftentimes begins, and how my life digressed to the devastated plight it is in today because of a simple beginning. You need to hear these details not for the sake of feeling compassion for me specifically, but to know that I, Kathleen Ann MacDonald, a daughter, a granddaughter, a sister, a niece, a girlfriend, a sister-in-law, a best friend, am only one among seven million, nine hundred ninety nine thousand, nine hundred and ninety nine other Americans whose lives bare too close a resemblance to the hell I have lived through day after day for the past 18 years. I hope the details you hear from me today do not make you pause to think about someone you know and love who suffers from an eating disorder, but chances are they will. I hope my words convey to you the misery those of us with eating disorders live through every day; both during the disease and throughout recovery. I hope my words bring you closer to understanding what this mental illness is truly about. And what I hope my words do most today, is convince you to follow the outstanding example of so many of your colleagues, by pledging your support for mental health parity.

    Eighteen years ago I watched a movie called, “The Best Little Girl in the World”. Those of you familiar with the movie know that it is based on a young woman who falls victim to anorexia. In the movie, she gets ‘sick’, gets an exorbitant amount of attention, gets taken to the hospital where she makes new friends, and gets better by the end of the two hour long movie – her family and friends acknowledging her more, and her life going on more beautifully than before. The movie made anorexia look easy and attractive. This movie, coupled with all the other messages I received from media, friends, and family, compelled me to take a simple step the next day that would change the rest of my life.

    The day after watching the movie, I threw away my lunch for the first time. I was twelve.

    The next time I remember eating lunch was 16 years later at age 28. You may not believe that I can remember the exact day, but the reason I can recall exactly when I ate my next lunch, is because at age 28, I actually called my mother to tell her I was eating lunch. Most people at 28 years of age don’t call their parents every time they eat something – they call to tell them about a job promotion or a raise, or to tell them they’ve completed a graduate program. I called because I’d eaten half a cup of soup. It was the first time I ate during the day (outside of a hospital setting) in sixteen years.

    Eating this meal two years ago was both the start of my (true) recovery and of the most frightening two years of my life.

    I was scared to death that I’d just eaten a ½ cup of soup – part of me wanted to rejoice in feeling healthy, but most of me, having lived without being healthy for so long, did not even know how I was going to go into work that night with a full stomach. I was crippled by the fact that I had food in me and that I would have to be seen in public having just eaten. I was crippled by these thoughts, knowing they were crazy. And I was crippled by the sickness that wouldn’t let me let go of these crazy thoughts. It is a vicious circle that doesn’t let go of your mind once an eating disorder takes control. I called into work sick.

    That night I started thinking about what a waste my life had become. I started thinking what a waste I’d been for sixteen years– focused solely on food and whether or not I was fat, disappointing my parents, disappointing myself, disappointing family, losing friends, losing best friends, losing boyfriends, having to leave college, re-entering college and being asked to leave again, losing jobs because I was always sick, lying all the time, depleting my finances, and seemingly never able to get rid of the awful disease that controlled my life and made me miserable.

    I finally came to the conclusion that day, that if I couldn’t get better, I didn’t want to live any longer. I wanted nothing more than to die because getting better seemed to be harder than being sick, and the toll anorexia had taken on my life seemed to be greater than my will.

    I was compelled to kill myself because of a ½ cup of soup.

    Just when I thought I had made a breakthrough in my sickness by eating, my heart sank. The thought of having to live this way for the rest of my life, was unbearable. I was caught in the game anorexia plays with you and won’t let you win on your own. I needed to eat to live, but I couldn’t live with eating. The absolute control this eating disorder retained over my every thought, my ability to like myself, my power to function in any capacity within society, was just that; absolute.

    Unlike what I saw in the movie when I was 12 years old, I realized, yet again, that this disease isn’t simple or pretty. The thinness you sustain from being anorexic gets you nothing. I looked at my life, consumed in the torment of contemplating suicide because I’d eaten some soup, and saw the devastation of the disease all around me.

    Imagine waking up every day for two years not wanting to wake up in the first place. And then, when you do wake up it is to a life filled with disappointment and regret. The reality of having had anorexia for 16 years had set in. I lived for so long up until that point thinking that my thinness would reward me for all the years of pain. It didn’t.

    What it did bring me was over $60,000 worth of debt - that doesn’t include what my parents spent. Twice my parents hospitalized me in a 28-day program costing upwards of $1,000 per day. They paid for therapy sessions – not just for me, but for themselves and for my sister because my anorexia destroyed my entire family’s life, not just mine. I depleted my IRA’s, my mutual funds, and my bank account. I used this money because I couldn’t seem to keep a job for more than a year at a time, and when I did hold a job, I called off sick so often that my paychecks didn’t amount to enough for rent. Because of so many years of being sick, therefore calling off from work constantly, therefore increasing my debt, I now fight every single day trying to figure out what to do – to simply manage. Last week I called a lawyer to discuss bankruptcy; he advised me to file. Bankruptcy is not something one normally associates with anorexia. I know I didn’t, but now I do – every day.

    I did have times when I thought I was strong enough to go to therapy and hopefully get rid of this disease. So I made appointments. I cancelled most of the appointments - for a couple of reasons. First of all, the overpowering thoughts I had that I was too fat to be seen by anyone, or that the therapist would think I was too fat to be anorexic, prevented me from going. The other reason I cancelled appointments, which I needed so that I could stop the insanity of feeling too fat to be seen by anyone, was cost. Most therapy sessions cost $110/hour, sometimes more.

    Because of anorexia, I am still in college at 30 years old. I now pay for tuition on my own because my parents grew tired of watching me waste their money when I had to withdraw from semesters because I was sick. I cannot receive financial aid from the government because I defaulted on a student loan, because I couldn’t go to work enough to earn enough money. I cannot receive a loan from a bank because of defaulting on my student loan.

    *This is only part of the vicious, cyclic toll anorexia has taken on my life. I wake up knowing that if I continue being sick I will die. I wake up therefore, wanting to go to therapy so I don’t die and become a statistic. But, because I haven’t been able to afford therapy for so long, I feel too fat to attend sessions.

    I do not want to live my life as a result of anorexia; I want to live my life beyond anorexia and all the years of torment and mistakes made. However, I am scared that I might have been sick for too long now, and I wonder if the costs of anorexia will force me to become part of the 2-5% statistic of eating disorder victims who take their own life.

    This is the reality of anorexia. It does not resolve itself easily like in the movie. It is not simply about being thin or getting attention. It is a exhausting mental illness and those of us suffering need help. My life is an emotional, financial, social, and familial conundrum as a result of anorexia. Every day I toggle between starting back up with anorexia (sure suicide) because I have created so many messes in my life, or continuing to try and plod through the cement-like consistency of this nightmare anorexia brought me, that only seems to thicken every day I remain alive.

    I never dreamed that throwing my lunch away one day would 18 years later result in me seriously considering suicide– for two years, every day, all day.

    I am one of many millions of reasons you need to support mental health parity.


      Celeste Pickard

    Appropriate Treatment Leads to Recovery

    Celeste Pickard, eating disorder survivor

    Good Afternoon. I am Celeste Pickard, a survivor of an eating disorder. I appreciate the opportunity to address all of you today. It was difficult to write this speech, as I needed to look at my past. Although I am not ashamed of where I have been it was a dark place that I wish no one ever had to visit. I developed an eating disorder at age 14 that went undiagnosed for 14 years. At the age of 28 I could no longer stand the physical and emotional toll that anorexia had taken on me. I had panic attacks and obsessive compulsive behaviors. I was depressed, suicidal and running out of time. At almost 5’11” I weighed only 113 lbs.

    I did not set out to be anorexic. I just never felt good enough and my life was out of control. My parents had marital problems that they often pretended were not there. I believed that so-called negative feelings were not acceptable: sorrow was buried, pain was hidden, and anger was swallowed. I overworked, overachieved and took care of everyone except myself. There was nothing left inside of me.

    At 19 I was searching for a way to escape. I dated a man who told me he loved me and would take me away from the pain of my family. So I trusted him and then one night he raped me. I blamed myself as I always did. I broke up with him shortly after but the pain remained. So I buried it, I stopped eating, I lost weight and my health deteriorated rapidly. As a result of my weight loss I had horrible pain in my stomach, constant diarrhea, dizzy spells and became weaker. My parents noticed what was happening with my body and how sick I had become. After rounds of tests with gastrointestinal specialists it was determined that I had irritable bowel syndrome. Medications helped somewhat but my mother wanted me to see an allergist. I was diagnosed with many food allergies and given a restrictive diet to help stabilize me. At that time I was eating about 8 things. By now I was terrified of food since not eating anything could relieve my symptoms and eating would cause great physical pain. This led me to restrict further until I was only eating about 500 calories a day, my weight dropped to 108 lbs. Food allergies allowed me to cover up my eating disorder for most of my 20’s. I later learned that my muscles including my digestive tract had atrophied so badly due to the starvation that they were unable to function properly.

    The emotional pain was mounting. The darkness and the anxiety were becoming unbearable and I was sinking into a deep depression. My behaviors were becoming more and more reckless. I saw a therapist for about 18 months in my mid-20’s but he never diagnosed an eating disorder. I had various medical problems including chest pains, yeast infections, hair loss, burning pain in my legs and still no one commented on my weight. A nurse complimented me on by ability to lose weight so quickly. Only one doctor asked me if I ate. This was the closest I ever came to having someone identify the problem.

    The years passed and the pain deepened. I burnt my wrists. I became an alcoholic. I made so many decisions while mentally ill that I would not make today. I married a man as depressed & suicidal as I was and then decided to sterilize myself. Although I loved children I did not want them to ever feel the way I felt. I did not see a way out.

    In preparing for today I searched for some piece of poetry that would convey to you the desperate state that I was in. I wrote this on July 4, 1994, almost 3 months before I went to inpatient treatment. Here is an excerpt:

    There once was safety in helping someone else
    Now I’ve no strength and they’ve left
    Where have all the wounded gone now that I am ready
    To become part of them…they don’t really know that I want to die
    sometimes every day, sometimes not at all
    Just make the pain stop
    Let me stop crying for just one week…

    As you can see I was being destroyed by my eating disorder.

    Today my life is completely different. I never thought I would live to 30 yet I just celebrated my 36th birthday. I have a new supportive husband who cherishes me, a life I am proud of and a safety and peace I dared not dream existed. I made it out. I am a survivor.

    The road back started in September 1994 by attending an eating disorders group at the Renfrew Center. I had been seeing a nutritionist to help with my food allergies and she suggested the group. I felt understood by the group members and trusted that they had my best interests at heart. I broke the news to my parents that I was anorexic. I told them that I needed their help to go to inpatient treatment right away.

    My parents took me to Renfrew for an assessment where we met with an intake counselor. During which time she warned us that my insurance might not cover inpatient therapy. I felt like I had been stabbed. I finally had admitted that I might need help and they were saying I might not be sick enough. The next day my father and I returned while their doctor attempted to get insurance coverage. I told him that if I needed to do something to prove to them how sick I was then I would, he understood that I was going to kill myself if they sent me home.

    I was blessed by receiving 27 days of insurance coverage; many of my friends were not so fortunate. Time after time I saw people sent home before they were ready, knowing they would relapse because they had not had the time to set down a foundation of healing. Inpatient treatment offered me the safety I needed to explore my feelings. I finally allowed myself to be sad and angry. I have no doubt that releasing these feelings gave me the space to learn to eat again. I had a long journey ahead of me but I had started to learn healthier ways to cope with my feelings and life besides destroying my body.

    For the first year after Renfrew I saw my individual therapist 2 times a week, had art therapy 1 to 2 times a week, group therapy, nutrition counseling and family therapy once a week. Eight months after my inpatient stay I started seeing a psychiatrist once a month as I tried Prozac to help with my depression. Due to this comprehensive treatment approach I was able to become stronger than my eating disorder and save my own life.

    The financial toll of my eating disorder was tremendous. My insurance was covering some of my outpatient treatment but certainly not all. My parents gave me more than $19,000 over two years so that I could continue treatment.

    Each passing year has led to further healing. I have had to peel back many layers after over a decade of turmoil to discover who I really am. In March of 1998 I made the final stand for myself. I left the last abusive boyfriend I would ever have. The fear of him following me and physically hurting me was weaker than the strength in me crying out that I deserved to be treated with respect. Finally I was free.

    As fate would have it I was reunited, at my brother’s wedding in November of 1998, with an old family friend who is now my husband, Dan. I quit my job in the family business where I had worked for almost nine years and moved to DC to be with him. I have a full and complete life now. I accomplished things that regular people do that were too frightening before. I have traveled to Europe three times. Eaten foods that were labeled scary and dared to dream of having a child one-day soon. I have escaped my past and learned to forgive myself a little more each day. I do not cry every week now except tears of joy at the life I have created.

    I was so very fortunate because I was able to receive the necessary treatment. Too many people are not given this opportunity. There is too much suffering and too much death. No one deserves an eating disorder, no one asks for it. It is not as simple as just start eating or stop throwing up. It is a serious mental illness that needs the attention of the nation. Together we can stop it. I hope that you go home today grateful that you have your physical and mental health. Make sure you hold on tight to the people close to you.


      Lisa Berzins

    Is it Real Vomit?: A Clinician's Battle for Insurance Reimbursement

    Lisa Berzins, Ph.D., Director of Women’s Behavioral Medicine, Eastern Connecticut Health Network

    I am a clinical psychologist who has specialized in the treatment of eating disorders for the past twenty years. Many of my patients with anorexia, bulimia and related disorders have not received adequate treatment for their illnesses due to limitations on their insurance coverage. Because of the complex, intertwined nature of biological and psychological symptoms, eating disorders tend to defy bureaucratic attempts to separate and divide the “physical” from the “mental” and thereby embody the need to broach entrenched inequities in mental health and medical benefits.

    Treatment of eating disorders is labor intensive. It typically involves psychotherapy, psychopharmacological evaluation and follow-up, nutritional assessment and counseling, and medical monitoring for concomitant conditions such as amenorrhea, cardiac abnormalities, osteoporosis, gastrointestinal problems, and impaired kidney function. Patients who fall below 70% of ideal body weight may require nasogastric feeding or total parenteral nutrition.

    The American Psychiatric Association has established criteria for a continuum of care based upon severity of symptoms. The continuum ranges from inpatient level of care, to partial hospital or day treatment programs, to outpatient services. With adequate treatment, substantial research indicates that eating disorders can be treated successfully.

    Third party payers are privy to the most intimate details of people’s lives and render treatment decisions on the basis of well-guarded corporate checklists. They tend to push for the least expensive level of care, which may not be optimal for recovery. For example, the majority of patients who receive inpatient treatment are now discharged long before they reach goal weight range. This increases the likelihood of relapse, repeated hospitalizations and poor prognosis. Despite the fact that weight stabilization and normalization of eating are integral to recovery, few insurance plans will pay for nutritional counseling.

    Although ostensibly designed to be collaborative, treatment planning between “gatekeeper” and clinician is often adversarial. One of the most onerous experiences that I had involved the case of a 32-year-old bulimic woman who had been briefly hospitalized following an overdose on antidepressant medication. She had a 15-year history of anorexia and bulimia, was bingeing and purging at least twice a day, was considerably underweight and most significantly had been in appropriate outpatient care in our program for 5 months. The reviewer chided me, “Surely as Program Director you must be aware that this patient doesn’t come close to meeting criteria for a partial hospital program!” I disagreed and cited commonly accepted criteria. What symptoms would he consider severe enough to warrant partial hospitalization? Bingeing and purging at least 10 times a day?”

    Then he asked, “Is it real vomit? “You know, there is a big difference between retching, coughing up sputum or phlegm, spitting and genuine vomiting.” Appalled, I told him that if mental health providers have to certify the composition and authenticity of their bulimic patients’ vomit, we have reached a very sad state in mental health care. He proposed to deny the 5-day hospitalization, accusing us of colluding with the patient to make a suicidal gesture so as to get treatment for her eating disorder “through the back door.” Furthermore, he asserted that the patient was manipulative and therefore he would not be surprised if she were to make another “suicidal gesture” when she learned that her insurance was denied. I suggested that if such an action were to occur, it might be in response to being denied appropriate care and to being blamed for her disorder. I expressed my indignation to him and appealed his decision to his superiors. Mercifully, the following day, the patient was authorized to enter the day treatment program.

    While this was a truly absurd situation, milder versions occur on a regular basis. Patients who have been in long-term outpatient therapy (which has precluded the need for further hospitalizations) are categorically denied treatment with their current therapist because of changes in their mental health benefits over which they have no control. This typically occurs as a result of corporate mergers buyouts or takeovers or because an employer has opted for a new benefit package. Denials as presented to the patient may be presumptuous: “We have determined that there are a sufficient number of our providers to meet your needs” (thereby overriding the clinical judgment of her current providers without ever having seen the patient.) Or the denials may be unabashedly self-serving: “This decision is based solely upon the administrative structure of your health plan and is not a comment on the medical necessity of the treatment nor on your strong desire to continue treatment with your therapist.”

    In Connecticut, Medicaid will not provide a patient with transportation to a mental health agency if the primary diagnosis is an eating disorder. Some insurance plans have an exclusionary clause for treatment of eating disorders. Others will not authorize inpatient treatment in a psychiatric facility. Such arbitrary bureaucratic constraints can lead to truly bizarre treatment innovations. One program actually sent anorexic patients home each evening hooked up to their portable feeding tubes to pour in themselves! What anorexic person would comply with that?

    How has this affected me as a professional? I left two positions as an eating disorders program director because I could not abide by agency pressures to secure managed care contracts by being a “team” player when it involved duplicity (e.g., presenting denials as “therapeutic” to patients and families). Staff cuts due to lower reimbursement rates further hindered my ability to deliver quality care to patients and their families. I now work in a nonprofit community hospital and still live with the pressures of managed care but by hospital policy, nobody is turned away because of an inability to pay. Last year, the hospital lost 22 million dollars.

    I no longer accept insurance in my private practice. Like other clinicians, working with “mismanaged care” was too aversive due to the amount of time required administratively, the sense of powerlessness in making treatment decisions and the significant decreases in reimbursement. Hours were spent on the phone battling about the “medical necessity” of continued therapy. When treatment was denied, the only recourse was an internal appeal. Advocating for my patients often did not achieve the desired result. Patients were often unaware of changes in their benefits and it was not uncommon to go unpaid. Even with authorized sessions and accurate billing, payment was often incomplete or not forthcoming at all.

    For many of my eating disordered patients, long-term therapy has made the difference between high functioning, productive lives and both physical and emotional torment. Without parity, such therapy may be an option only for those with the independent means to afford it.

         © 2008 Eating Disorders Coalition for Research, Policy & Action. All Rights Reserved.