The Dangers of Eating Disorders and the Need for Health Care Reform
House of Representatives Briefing: April 24, 2001
Featured speakers:
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Congressional Hosts:
Sen. Paul Wellstone Special Guests: Kate Dillon and Senator Hillary Rodham Clinton |
[Portion of speech transcribed from videotape]
Senator Hillary Rodham Clinton:
I want to thank my colleagues, and to offer my assistance. You being here and telling your story is a very important step in gaining the recognition for what these set of conditions really are, and the toll they take. Not only on the person who suffers but on the entire extended family. And there is a lot of guilt, there's a lot of shame, there's a lot of denial and a lot of ignorance.
What I hope is that each of you realize how important it is you came today. That you return home even more energized by what needs to be done. That you will stay in touch with my office. And to know that you are not alone in this. I see this as a beginning.
I hope we are successful at persuading insurance companies to provide the kind of treatment that is needed, in raising awareness through education and outreach, in getting more research and treatment dollars in general so that this disease which strikes so many vibrant and intelligent young people will be seen for what it is - something that we have to invest some time and money and our mental and emotional resources trying to combat.
Thank you for inviting me.
David Herzog, M.D.
President, Eating Disorders Coalition for Research, Policy & Action
I am David Herzog, Professor of Psychiatry and Pediatrics at Harvard Medical School and Director of the Eating Disorders Program at Massachusetts General Hospital, and President and a founding member of the Eating Disorders Coalition for Policy, Research, and Action. I am delighted to welcome you here for this briefing on eating disorders. We are grateful to Congresswoman Louise Slaughter and Senator Paul Wellstone for sponsoring this briefing. We have wonderful presenters, and a great deal of important information to share with you. We are eager to address questions you may have. This coalition consists of various organizations, families, and individuals with a shared mission to improve access to care for individuals with eating disorders, increase funding for eating disorders research, and increase public awareness about these disorders. We are a young and enthusiastic organization, only one year old.
Eating disorders are a serious public health concern affecting up to 8 million Americans, young and old, and, contrary to popular perception they cut across boundaries of race, color, and socioeconomic status. They are not simply a problem of young affluent white females. Eating disorders are associated with major medical complications, including cardiac arrhythmia, cognitive impairment, osteoporosis, infertility, and, most seriously, death. In fact, they have the highest mortality rate of any psychiatric illness. We are making strides in prevention and treatment through research, and, for that, we are thankful to the NIMH. These disorders, we have found, are familial. We are learning more about the role of genetics. We are also learning about other risk factors, including important socio-cultural factors such as the exposure to media images, temperament and personality, and neurotransmitters. We have developed an effective psychotherapy for bulimia nervosa: cognitive behavioral therapy, that is a structured, focused, manual-based therapy aimed at altering unhealthy attitudes and behaviors. We now know that we need to achieve and improve nutritional status in our patients so that they can best use psychotherapy. It is clear that poor nutrition affects cognition. We know that eating disorders are prone to relapse, and we need to develop relapse prevention strategies. We also know that we need to identify eating disorders early, for, when they become fully developed, patients frequently do not recover. We are aware that osteoporosis is extremely pervasive in anorexia nervosa, and we are developing new treatment strategies. We also know that we need to address depression, because of the high rate of suicide in eating disorders.
So we have a big problem: an all too common illness, yet an illness many in the public and even in the medical profession do not take seriously enough. Patients are not getting the treatment they need. All too many patients are unable to access appropriate treatment because of insurance constraints, and I have made enough calls to insurance companies to confirm that view.
There are a number of organizations around the country committed to advocating for individuals with eating disorders and their families and we have come together to have a stronger voice. Some 18 months ago I contacted Jeanine Cogan, the current Executive Director of our Coalition, about forming such a coalition. She had done important work in Washington D.C. for the American Psychological Association and for Women's Health. We contacted major eating disorder organizations to form the Eating Disorders Coalition for Policy, Research, and Action. These include my organization: the Harvard Eating Disorders Center, Eating Disorders Awareness and Prevention, and the American Association of Anorexia and Bulimia, (who have since united to form the National Eating Disorders Association), Anorexia Nervosa Associated Disorders in Illinois, the Academy for Eating Disorders (the major organization of professionals working in the field of eating disorders), Fathers and Daughters, the Renfrew Foundation, the Anna Westin Foundation in Minnesota and the Elisa Foundation in Texas. We formed our own 501C3, and created an office in Washington. Through the sponsorship of Congresswoman Louise Slaughter and Senator Harry Reid, we held a congressional briefing last September. Following that briefing, it became apparent that we would have an even stronger voice if we brought together families, individuals and others who are committed to improving the lives of those suffering from eating disorders and assisting in the prevention of such disorders. We were indeed fortunate to cross paths with Kitty Weston, a parent from Minnesota who felt passionate about our mission. Kitty along with other key parents such as Doris Smeltzer, have been key in our efforts to bring together families as part of this coalition. They have created the Family Action Council, a key component of the Coalition. We have three speakers here today who are members of the Family Action Council.
So who are we today? We are a coalition of organizations, individuals and families, and we have come together here today from some 20 states. There are many others who wish they could be here. Now we will share the story of our pain, our needs, our knowledge, and our strategies. I thought we would start with a video that was developed for an Eating Disorders College Screening Program. We have edited it down to approximately 5 half minutes. Please pay attention to one of the individuals Stephanie, as you will hear from her mother in person later on.
Doris Smeltzer
As you've heard, we come from Napa in Northern California. We've traveled this great distance to share our daughter, Andrea's, story, but we must first acknowledge that her story is, sadly, just one of countless others, many of them in this room, who could share their own heartbreaking tales. We hope to honor them in the telling of ours.
Andrea is the younger of our two daughters…her older sister, Jocelyn, is now 27. Andrea had just finished her sophomore year at Pitzer College, one of the Claremont Colleges in southern California when she died. Before we relate that part of her journey, we must take you briefly back to the day of Andrea's birth:
The southern California sun was unseasonably hot, even at 6 a.m. that 29th day of October, a little over 21 years ago. I remember the relief I felt when I heard the slamming of our Nurse Midwife's car door in our driveway-I knew that Andrea's birth was imminent and was thrilled that the Midwife had made it prior to, rather than after, the big event. Jocelyn, at almost six-years-old, opened our front door and shouted, "My mom wants to push, but my dad's making her blow," alerting the Midwife to grab her black bag before rushing into our home. My inclination at that moment was to push…push with all my might, to bring Andrea into this world. But pushing was premature at that point. I needed to continue to sit with the pain until the moment was right…until it was time to urge our daughter, ever so gently, into the promise of her future.
And what a future it appeared to be…Andrea grew into a most incredible soul. At 14 she lived as an exchange student in Spain and therefore spoke Spanish proficiently and was on her way to becoming fluent in German as well. She was trained in opera, loved the theater and was an avid dancer. She was working toward a degree in International business and politics and looked forward to saving the world. We never doubted that she would.
Andrea called home from college the day after the first time she made herself throw up. I told her that this was way beyond my area of expertise and that we needed the guidance of professionals. I asked her if she was willing to get help. She said yes. She arrived home a week later for her summer break and within days we were in therapy to help her heal.
The psychologist Andrea chose, from the list provided by our HMO, claimed to be an expert in eating disorders. We now know that this well-meaning, dedicated therapist did not truly understand the complexities of the behaviors. The eating disorder numbed and averted attention from Andrea's underlying feelings, which the therapist worked with our daughter to address. Therapy did not include, however, working with Andrea on reducing her binge and purge behaviors. Andrea was encouraged to have blood-work done but her vital signs were not being regularly monitored. We now know that danger signs appear first in vitals not in blood. There are many erroneous myths and a plethora of inaccurate information and attitudes that professionals must diligently wade through in order to avoid life-threatening errors. This, compounded by the denial of insurance to cover necessary treatment has lead to a crisis in care.
Andrea spoke to us about eight hours before her death. She sounded fine. She had returned to southern California the week before to honor a commitment she made to housesit for a friend. The few days before, when we kissed her goodbye, she was the picture of health: bright green eyes, healthy red hair and a smile that could light up a room. She had seen her southern California therapist that morning and was excited because the therapist had finally been able to locate a group therapy situation that Andrea could attend the following afternoon. She planned on calling home again the next evening to wish her Dad a happy birthday. She went to bed that night as usual and, it is conjectured, that during her sleep an electrolyte imbalance caused her heart to stop beating. She died on her father's birthday…exactly 13 months from the first time she made herself throw up.
The Deadly Truth of Eating Disorders: A Parent's Story
Tom Smeltzer
To play a role in Andrea's goal to save the world we, like others who have traveled here today, have become vocal advocates for the cause, both personally and through the Coalition's Family Action Council. Each member of the Council has chosen a unique path of activism…ours has evolved over the year and a half since Annie's death. What began as a healing talk requested by Andrea's friends and colleagues at Pitzer College has grown, by word of mouth, to the point that it now appears to have a life of its own. We have been invited to share Andrea's story at universities and conferences across the nation. I read selected pieces from Andrea's journals and poetry and from them Doris teaches. Due to the number of students who wait to speak with us after our talks and the e-mails received through our web site, we now sincerely believe that eating disorders are a silent epidemic among our youth.
Andrea's message speaks to the incredible complexity of Eating Disorders. Although many factors are contributors to their development: cultural, genetics, individual temperament, and familial issues, our talk strongly addresses the media's influence as well as our culture's normalization of diets and body dissatisfaction.
By speaking out we hope to encourage sufferers and families to expose and expunge the secrets and shame so common to this illness. We drive home the point that Eating Disorders are deadly. They can kill, and kill quickly, even when one looks and feels fine.
Six months after Andrea's death, we visited the National Institute of Mental Health in Bethesda, MD where we met with the head of the Eating Disorders portfolio. We arranged the meeting to advocate for increased funding and a focus of research on Prevention. While there, we were quoted the small number of death statistics, which it was felt helped place Eating Disorders lower on their list of priorities.
We have discovered that the statistics do not reflect reality. Stats come from death certificates. Many who die from Eating Disorders have certificates that list causes other than Anorexia or Bulimia. An Eating Disorder was not listed on our daughter's death certificate; therefore she is one of the many who has not been counted among the numbers that influence funding.
In doing a bit of personal research and calling coroners in various counties on the east and west coasts, we have discovered differences in interpretation of the guidelines regulating what can or should be listed as causes of death.
These guidelines must be standardized and clarified nationwide so their application can be consistent and truly reflective of the reality of the number of lives being lost to Eating Disorders.
As Doris shared at the beginning of our talk, there was a time during Andrea's birth when Doris had to "sit with the pain." We are again in pain. But this time we will not sit. We will push. Push, along with all the other devoted people in this room, because we cannot afford to sit quietly by and watch others lose their children to this complicated, misunderstood and devastating disorder. We must educate so that there is understanding without judgment. With this understanding will come the opportunity for shifted paradigms, forward movement, and much-needed change. We must take that opportunity now, because we cannot afford to lose any more promising futures.
Let me close with Andrea's words. These are taken from the last stanza of a poem she wrote just six months before her death, expressing the perplexities and joy inherent in the Journey of her life:
Look carefully, Judge kindly, Read under and between lines. The Journey is never so clear as the Destination, And the telling is more confusing still.
Dave Honan, parent
Text of speech not available
Adequate Treatment Can Result in Recovery: My Daughter's Story
Maxine Weinstein
The problem began the summer of 1992. Stephanie returned home from her freshman year at the University of Florida and had gained 8 pounds. She began to exercise excessively and diet. I did not know that this was the beginning of three years of a touch and go life-threatening situation.
In the fall of her sophomore year she, herself, detected the beginning of an eating disorder. Her eating became poorer and her involvement in exercise and school activities was excessive. An obsessive boyfriend did not help matters. He was obsessed with her looks and jealous of each activity she participated in.
In the spring we noticed that Stephanie's entire existence was either working out or participation in her school student government. This was not any student government but one that ran activities for 36,000 students. Time for herself was non-existent. Stephanie was running from Stephanie. In the spring, she had a car accident and a bike accident. At the time we did not see the connection with an eating disorder, but 4 months later sitting in a support group, it occurred to me that she had blacked out from lack of nutrient.
My story begins like every other parent's story but luckily it had a happy ending. We were able to connect with the right professionals and save Stephanie's life. Her primary care physician was an adolescent /young adult specialist and immediately hospitalized her. That was May 17,1993. She informed us that her vital signs were dangerously low and that she had heart irregularities. My beautiful daughter was hooked up to a heart monitor and blood pressure machine. I was in a state of shock, but looking back I realize how lucky I was to have a doctor who, not only, understood the problem and realized the potential danger but also acted quickly to keep her safe.
We were fortunate that Stephanie found an excellent therapist who worked closely with her medical doctor. At the time I did not realize that this team would be her lifeline and part of a larger team that would help her fully recover.
When Stephanie hit bottom, we had the facilities to help her and us. She was in a program for 4 months. Our doctors insisted she remain hospitalized until she reached a weight where she would be able to think clearly and rationally. Our insurance company covered 80% of these costs.
What makes Stephanie's experience different from so many others today is that she had a PROGRAM. The program I speak of no longer exists today. It doesn't exist because the facility could not afford to run it since insurance companies no longer covered such programs. Insurance companies gave up on these young people.
In July of 1993, Stephanie entered the first of many eating disorder hospitalizations. Alan and I believed this would be the cure! What we did not know then but I can tell you today is that Stephanie was in the hospital 6 more times. These hospitalizations were at Children's Hospital in Boston, Westwood Lodge in Westwood, Massachusetts, McLeans in Belmont and Renfrew in Philadelphia. All of these hospitalizations helped keep Stephanie alive. Her professional team kept Stephanie alive. Her insurance company kept her alive. Unlike the care of a premature baby, which is the most costly care, an eating disorder is not cured in a few months. It takes years.
All long-term illnesses take a toll on a family but I believe an eating disorder controls a family. Our life rotated around Stephanie. It changed the family dynamics-no one was spontaneous. We all walked on eggshells. We needed help! Stephanie's therapist helped us find a family therapist. He became our lifeline. He helped us plan our strategy and validated our involvement. It helped define our role. We were not her doctors, but her parents. Our role was to keep her safe and be her advocate. We fought the insurance companies for her and dealt with mange health care professionals. We were lucky, we won! As our team grew, the money insurance paid grew as well.
If insurance gave up on Stephanie, if my team gave up on Stephanie, if we gave up on Stephanie, where would we be today? What would be missing from our life today? We would not have our precious daughter and our beautiful granddaughter. Let me tell you what happens when your daughter fully recovers.
Stephanie, not only, graduated from college but she graduated with honors. She was the assistant dean in the school of criminal justice at Northeastern University and now she is a wife, mother of a beautiful baby girl and works as the field operations coordinator for LP Innovations. She has made 3 films. She has appeared on television, in magazines and has spoken to schools and groups. She has done this to help other young women. Her motto is if I save one girl from going through what I went through it is worth it. Insurance might have spent some money but as a result they have a productive member of society-one who is helping others and giving back to the system.
I had the same attitude as Stephanie. I wanted to help people avoid my traumatic three years. I led a support group for families for 31/2 years; I speak to groups, write articles and sit on the board of directors of Massachusetts Eating Disorders Association.
Stephanie has achieved her goal. She is happy, healthy, a college graduate, a wife and a mother. I truly believe this would not have been possible without the right team-therapist, medical doctor, family therapist, nutritionist, family, friends and financial help from our insurance company. Let's give this opportunity to other young people struggling with an eating disorder. Help us train physicians and therapists! Give us the resources to open more treatment centers and offer adequate treatment to those young people who need help. Insist that insurance companies help families pay for the finest professionals and treatment possible. Help us save the lives of other young people.
Removing the Obstacles to Accessing Care
Sam Menaged, Board Member, Eating Disorders Coalition
I'm Sam Menaged and, before I begin my remarks, I want to say how proud I am to be sharing today's program with these passionate families and professionals. The families, especially, will continue to motivate me as we work toward a better understanding of eating disorders and eating disorders treatment. I thank them for coming forward and sharing their stories.
I have been asked to speak today because, for the last 16 years, I have been an active member of the eating disorders community. In 1985, I founded The Renfrew Center in Philadelphia, the first residential facility dedicated to the treatment of eating disorders. We have treated over 20,000 women from all parts of this country and abroad. The Renfrew Center Foundation grew out of the work of the Center itself and has as its goals to advance education, research and treatment of eating disorders, as well as to provide financial assistance to women who need help, but can't afford it.
But today, I'm here representing treatment providers in general. I've conferred with my colleagues in the field. Patients come to our doors with a serious mental health condition that can also, if left untreated, have devastating physical consequences…osteoporosis, infertility, gastro-intestinal damage, kidney disease, diabetes, cardiac incidents, and yes, too often, death. In fact, anorexia has the highest mortality rate of any mental illness.
Ironically, our greatest fight in treatment isn't only improving the physical and emotional health of our patients. It is also the constant effort to move our patients' own insurance companies toward a better understanding of eating disorders so they will remove the barriers to effective care. And that's where I want to concentrate my remarks today.
As I see it, there are four main obstacles to treatment, and I will address them individually in a moment. But first I'd like to share a story with you that illustrates some of the issues I'd like to raise.
A major insurance company in our area approved three days of residential treatment by for a young woman with anorexia. Through our efforts, we extended her treatment to 10 days.
On the 9th day, the woman revealed to her therapist that her father had been sexually abusing her. We contacted the insurer to extend treatment in light of this new revelation. We were denied.
Understanding the gravity of their daughter's - and their own - situation, the family managed to pay for a few days of treatment on their own. Because of the patient's delicate situation, we gave them a scholarship for the balance of that week and the next.
At the completion of treatment, the patient's mother wrote a laudatory letter to the insurance company about the treatment her daughter received at Renfrew. She also asked for reimbursement for her out-of-pocket expenses and asked that Renfrew be reimbursed for the additional charges.
Within days (?), three people from the insurance company came to my office demanding that we refund the family's out-of-pocket fees; they indicated that the extended care was a breach of our agreement with them. For the sake of our relationship with the insurer, we did refund the family's money, essentially treating this patient for two weeks free of charge. A short while later, the insurer ripped up our agreement anyway.
The "happy ending" to this story is that the patient received treatment and the family continues to work on their issues. But I think you can see what types of roadblocks were erected by the managed care company.
The first roadblock is the length of stay itself. Prior to the proliferation of managed care contracts, patients in our residential facilities had an average length of stay of 50 days. Now it's closer to 15. As a result, we're seeing some of the same patients over and over again. Prior to managed care, this return rate was under 10%. Today it is 33%.
The unfortunate reality of treatment for these disorders is that it takes time. Time to heal physically and time to heal emotionally. The patient herself has to take time to understand her emotional and physical symptoms. She needs to unlearn damaging behaviors and relearn healthy ones. It is not, as many of our insurance providers seem to think, about simply containing the symptoms, or simply gaining weight. Generally, the slower the weight is restored, the longer the restoration is sustained. The temperaments of these patients make them vulnerable to being easily overwhelmed. If we progress too fast, treatment can become traumatic and counter-productive.
Research consistently proves that the care of eating disorders without a proper course of treatment (or length of stay) is futile. Data shows, for example, that discharging patients before they have reached 90% of expected body weight doubles the likelihood of relapse. And psychiatric medications are not even effective until the patient reaches that weight threshold. Patients either stay sick or will recycle time and time again. And that recycling has medical consequences that a health insurance plan can't ignore - a burst esophagus or damaged bowel or cardiac episodes, for example. To keep an anorexic or bulimic chronically ill can also have a long-term cost on society. The person can end up on disability, unable to work, unable to contribute. In short, perpetuating the cycle of illness affects not only the patient and her family, but over time, the same insurance company - or companies - that restricted her treatment in the first place.
Length-of-stay issues fall under the insurance banner of "medical necessity," a concept familiar to all managed care companies. As a matter of course, insurers will only pay for services that they consider medically necessary. They won't bear the costs for cosmetic surgery, for example, if it is not necessary to improve the patient's health or functioning. That makes sense.
But what doesn't make sense is how managed care companies define "medical necessity" in the area of mental health. The key question that determines "necessity" is: Is the patient imminently dangerous to self or others?
This is an inappropriate standard for the patient with an eating disorder! Most of the patients we see do not fall into either of these categories. As a mental illness, eating disorders can't be compared to a biological disorder like schizophrenia, where chemical intervention can stabilize the patient. For the anorexic or bulimic, there is no chemical fix. Drugs may open the patient to therapy, but drugs won't make her eat. Comprehensive eating disorder programs recognize that, in order to address eating disorders, one must address the psychological, cultural and familial issues as well.
In addition, there's a lot more to treating an eating disorder than dealing with the outward signs. Getting an anorexic patient's weight up is only a first step in the healing process. But too often, managed care companies stop there, a clear indicator that we'll be seeing that patient again.
The American Psychiatric Association has established guidelines for treating the eating-disordered patient. To take away one of the first obstacles to treatment, we urge the adoption of the current APA guidelines by all managed care companies. In addition, we encourage the convening of clinicians in the field to develop criteria for continuing treatment at the various levels of care.
The second obstacle that was illustrated in my example is the policy of some managed care companies to actually deny their own subscribers the right to pay for treatment out of their own pockets after denial for lack of medical necessity - as defined by the insurance companies.
This clause is literally written into the managed care contracts - and health care providers cannot accept private payment even when the provider's definition of medical necessity differs from that of the managed care company.
Patients should have the right to private pay. But many managed care companies forbid it until all appeals have been exhausted. That can take days or even weeks, leaving patients in limbo about their treatment - or outside the treatment circle all together. This completely undermines the continuity of care that is so critical with these patients. After months and months of hard work on our patients' behalf, we have finally received a commitment from one of the country's largest managed care companies to make a final determination within 24 hours of the patient's last approved day, and then permitting private payment. It's a small victory, but certainly a step in the right direction. But it shows that no patient, no family and no treatment center should have to take "no" from a managed care company without asking questions and demanding answers.
Yet, even with the right to pay on their own, for most families, it's not clear sailing. We see families emptying back accounts, liquidating college and retirement funds, even taking out second mortgages to get the care they need. To quote a colleague from New York: "We need programs for the afflicted, not just for the affluent."
The third obstacle to treatment is the out-and-out exclusion of eating disorders from some insurance policies that otherwise cover mental health. That's discrimination and it's not right. Eating disorders are recognized by the American Psychiatric Association, among others, and as such, should qualify for equal coverage.
We urge the immediate discontinuation of this practice.
And the fourth obstacle to treatment is mental health parity. We support the legislation proposed by Senators Wellstone and Domenici that no matter what their circumstance or where they live, everyone deserves equal benefits for mental health care, as well as medical care.
But we also want the loopholes closed. Managed care companies have skirted the parity issue by covering mental health but excluding treatment for eating disorders, as I noted earlier. They have also find ways of getting around the issue by including coverage for eating disorders in only one of their many policies - frequently the most obscure or most expensive.
These practices are certainly outside the spirit of the legislation and we want them stopped.
None of the psychiatrists, psychologists, therapists, nutritionists, nurses or anyone connected with the treatment treatment of eating disorders wants to see a patient turned away or discharged prematurely. We do our part to keep costs as low as possible and, frankly, give away thousands of dollars in uncompensated care every year.
But the problem of eating disorders is not going away - it actually seems to be growing. Yet the resources for treatment are decreasing and eating disorder treatment programs are closing their doors on a regular basis. They die a managed care death: access to care is too often denied and, if care is permitted, payment can come as much as a year later, if at all. I have to ask: What happens to the people who need care when the treatment centers don't exist because it is extremely difficult to run a financially viable program?
I hope this will not continue to be the case. I earnestly hope to view these managed care companies as strong partners, not as adversaries. We should all be looking after the best interest of the patient.
What can you do?
We're asking Congress to work with insurance companies to heighten their awareness and understanding of eating disorders and to open up more options for treatment coverage. We encourage you to help remove the obstacles to care and replace them with positive avenues of hope:
Adopt the guidelines of the American Psychiatric Association as they relate to medical necessity and convene leading clinicians to develop criteria for continuing treatment at the various levels of care.
Guarantee the patient's right to privately pay.
End the discrimination that excludes eating disorders from mental health insurance policies.
Pass mental health parity legislation and close the loopholes that affect mental health parity.
As I said in my opening remarks, I have been touched by the courage, the motivation and the tenacity of the families who have walked through our doors. I hope with this week's activities, that Congress is also sensitized to their stories. It is my hope that we can work together to remove the impediments to care for their nieces and cousins and friends and daughters. And, yes, their sons as well.