August 11, 2001

My name is Kiesha Raburn. I am a XXXX  member with member #595-58-1381. I am  29yo  and suffering from Anorexia and Bulimia. I am hereby writing a grievance letter regarding XXXX's member options for treatment of eating disorders. I first
phoned XXXX when I had reached my all- time lowest weight of 87lbs. My level of  functional in society was severely impaired due to my illness. I either would eat nothing or would eat to a minimum and purge by vomiting. I was running 50 miles a week. I was going through severe binges consuming 5,000-10,000 calories a day and vomiting afterwards.

I was taking an excessive amount of diet pills (ephedrine), diuretics, and laxatives. I suffered from severe depression requiring a need for Prozac, an anti-depressant. I suffered from extreme mood swings, withdrew from all family and friends, isolated by
remaining in my home for days at a time, suicidal thoughts, self-hate and worthlessness, and hopelessness.

Physically I suffered from hair loss, dysphagia (difficulty swallowing), enlarged salivary glands, irritated throat, constipation, diarrhea, hair loss, amenorrhea, continuous fasciculations in my legs (twitches), weakness, brittle nails, dehydration,
electrolyte imbalance, oral lesions, dry skin, fatigue, bloating, and edema. My life had become so consumed in my illness and desire to lose weight that I was unable to function and I was slowly dying. I work as a registered nurse at Tampa General Hospital in the intensive care unit and went full-time in June by taking a drastic pay cut of several hundred dollars a month just to allow myself to obtain medical benefits to become available.

I was so incredibly sick that I decided that it was time to get help for my illness. I had to wait until July 2001 for my benefits to kick in and in the meantime I made several phone calls to various treatment centers to plan for my upcoming treatment. My medical doctor, Dr. Y; my psychiatrist, Dr. W; and my psychologist, Dr. K all agreed that I was in dire need of inpatient treatment for my eating disorder. My symptoms were unmanageable on the outside and had absolutely no control over my eating habits. I needed a well-structured, controlled and safe environment where I would surrender my responsibility for self-care and allow intense behavioral modifications to ensue. My psychiatrist and primary care physician both contacted XXXX and recommended this inpatient care. Upon speaking with XXXX's behavioral health representatives, P F, Dr. C, and D L, XXXX denied my coverage for inpatient or residential treatment and recommended outpatient treatment at T P. T P is a 12-step program, with group therapy among drug addicts, alcoholics, and compulsive overeaters. The group only met 3 times a week in 2-hour time frames. This treatment was obviously not appropriate for the care that I needed and was recommended. I refused to commit to this outpatient treatment, knowing that I needed more suitable care. I was also referred to SJ hospital since I felt so "out of control". SJ was contacted by myself and they recommended that I not come because they "don't treat eating disordered patients" and that I need specialty care. XXXX again denied me. The stress from all of this was making my disease worse and I became sicker requiring me to take a FMLA from work. I was hospitalized by Dr. C in a medical unit on July 5-9, 2001 for dehydration, fluid therapy, and tests.

XXXX continued to deny my treatment while I lay in the hospital bed making several phone calls trying to save "my life". I was told by XXXX that my employer does not have residential treatment facility benefits and there was nothing they could do but outpatient treatment. While in the hospital I looked through several of my books and found an inpatient hospital, R I in Atlanta, GA. I contacted their program and found that my insurance benefits includes "inpatient treatment" but Ridgeview was "out-of-network" according to XXXX. HMO's hence do not cover out of network treatment. I was also told by XXXX behavioral health that I "did not meet the criteria for inpatient care" based on my height and weight of 93 lbs. I was devastated. I was discharged from the hospital on July 9, 2001 and was basically told "there was nothing they could do". XXXX would not pay. The costs for inpatient/residential care is $10,000-30,000 a month. I obviously do not have that kind of money. I feel as though I was sent home "to die". Here I was very eager to get well, helpless, and hopeless. After contacting XXXX, I agreed to go to TP for an evaluation. There I met with M B, admissions coordinator. Upon completing my evaluation she concluded that, "with my history of abuse and self -mutilating behavior, as well as increasing social isolation, it was indicated that I needed intense inpatient or residential treatment for a minimum of 30-60 days, and that I did not meet their criteria for treatment on an outpatient basis due to the severity of my symptoms". She too agreed with my primary care physician, psychiatrist, and psychologist. Days went by and fortunately I was able to convince my employer to pay for my treatment and so they paid $15,000 out of pocket and I was admitted  to R on July 18, 2001 in the inpatient hospital. I was there for 5 days due to my high probability of medical complications, including heart and kidney failure during the dangereous "re-feeding" process.  I was involved in intense therapy for 12  hours, 7 days a week. The doors were locked behind me. I was fed every 2 hours. I could not go to the bathroom alone in fear that I would throw up. I was weighed daily backwards so I couldn't see the weight. I had surrendered my self-care. After spending 5 days inpatient and being closely medical monitored by a dietician, phsycian's assistant, psychiatrist, and psychologist, I was sent to a half-way house for partial hospitalization at R. I was sent so soon because of the little money that I had for treatment. The partial program was cheaper yet was remained 12 hour therapy sessions 5 days a week. On August 3, 2001 I was discharged from R due to my limited financial means. That was 17 days of inpatient and residential care. The average length of stay for those with eating disorders are 60 days.

I have been home for one week now and continue to struggle. I still find myself engaging in my eating disorder behaviors and am terrified of re-living my life in this destructive disease. I reached a weight of 105lbs on discharge from R, where my usual set-point weight is 125lbs due to my extremely muscular body type. I agreed to attend TP a few days after my discharge and I sit in a room in a group setting where I am the only person with an eating disorder as the rest of the group are addicts. I can only hope that this will be enough to overcome my illness and I feel very hurt, angry, and dumbfounded at XXXX's lack of empathy and compassion and unwillingness to help me. I was left without options. I was left to die.

The following information was obtained from ANAD's (National Association of Anorexia Nervosa and Associated Disorders) website (www.anad.org).

Eating Disorder Facts:

Eating disorders cause immeasurable suffering for victims and families.
Eating disorders have reached epidemic levels in America: all segments of society, young and old, rich and poor, all minorities, including African American and Latino
Seven million women
One million men
Victims lose the ability to function effectively -- great personal loss and loss to society

DURATION OF ILLNESS/MORTALITY

77% report duration from one to fifteen years*

30% report duration from one to five years

31% report duration from six to ten years

16% report duration from eleven to fifteen years

It is estimated that six percent of serious cases die

Only 50% report being cured
 

COST OF TREATMENT

Treatment for anorexia nervosa and/or bulimia is often extremely expensive. Large numbers of victims require extensive medical monitoring and treatment, and therapy generally extends over two years or more.

Cost of inpatient treatment can be $30,000 or more a month. Many patients need repeated hospitalizations.

The cost of outpatient treatment, including therapy and medical monitoring, can extend to $100,000 or more.

Eating disorders are rampant in our society, yet few states in the nation have adequate programs or services to combat anorexia nervosa and bulimia. Only a small number of schools and colleges have programs to educate our youth about the dangers of eating disorders.

Every state in our nation and thousands of schools have extensive programs aimed to prevent alcoholism and drug abuse. The value of such programs, especially education programs, has been proven and accepted into school curricula. The immense suffering surrounding eating disorders, the high cost of treatment and the longevity of these illnesses make it imperative that vastly expanded education programs be implemented to prevent anorexia nervosa and related disorders.

Since 86 percent of victims report the onset of their illness by age 20, education programs should focus on these ages in order to maximize preventive efforts. ANAD education/early detection/prevention programs provide models for low cost outreach services that benefit hundreds of thousands of our youth. ANAD has urged federal and state governments to undertake and develop education programs for our citizens.

Advocacy

DATE: May 1, 2001

TO: ANAD MINNESOTA RESOURCE PEOPLE, GROUP LEADERS, MEMBERS AND
MENTAL HEALTH PROFESSIONALS
FROM: VIVIAN HANSON MEEHAN, PRESIDENT
JUDY TEPFER, LEGISLATIVE LIAISON
RE: IMPORTANT ACTION IN MINNESOTA

On October 3, 2000, Minnesota Attorney General MH filed suit against BBBSS on behalf of children and young adults who were denied health insurance coverage for eating disorders, mental illnesses and chemical dependency. In the lawsuit, the state maintains that the insurance company, the largest in the state, has engaged in an unlawful pattern and practice of misconduct in denying and limiting medically necessary mental health, chemical dependency and eating disorder treatment for Minnesota children and young adults, in violation of Minnesota consumer and insurance laws. . . . [Their] illegal conduct has resulted in significant harm to Minnesota consumers and unfair shifting [of costs] to Minnesota taxpayers. Included in the lawsuit is the personal testimony of a number of Minnesota parents whose children have suffered because of BBBSS's denial of coverage.
Evidence shows that the insurance company has consistently tried to shift responsibility to taxpayers and/or families:
    (1) telling policyholders to seek help through the juvenile justice system (suggesting parents should have their children
         arrested) or the foster care system;
    (2) denying or severely limiting coverage for court-ordered treatment;
    (3) denying or severely limiting treatment as “not medically necessary,â€� contradicting recommendations of their own
          network's physicians who have examined and treated the patients;
    (4) forcing subscribers into unwarranted appeals of denials of coverage for medically necessary and pre-authorized
         treatment;
    (5) misrepresenting and omitting material facts regarding coverage of authorized treatment; and
    (6) hiding from subscribers the true criteria for its denial of coverage, placing subscribers at an unfair disadvantage during the
         appeals process.

Among the testimonials are the stories of children and young adults suffering severe eating disorders, who were told variously that treatment was not "medically necessary", that "proper channels" had not been followed, and/or that their contract did not allow "this type of treatment." A former employee of BHS, Inc. (BHSI), the supposedly independent mental health clinic which was wholly owned by BBBSS and which carried out its case reviews, stated that the BHSI medical directors instructed its employees that "there was no effective treatment for eating disorders." One of the young people whose story is told eventually committed suicide, distraught, among other things, over the great financial burden to her family.

Attorney General H won the first round when his motion to force BBBSS to turn over records was approved by the court. But help is still needed. More testimonies of affected people have been requested. ANAD believes that if this is successful in Minnesota, this lawsuit will have repercussions around the country. Already Attorneys General in other states
are being contacted, in the hope that they will follow Attorney General H's lead.

I plan to do everything in my power to advocate treatment for those of us with eating disorders. The laws have to change. We need coverage and treatment before we are on our death bed. We do not deserve a death sentence. We do not deserve to be
over-looked. Eating disorders are a disease which only outcome is death or appropriate treatment.
Which would you chose?

Kiesha Raburn
504 S. Melville Ave
Apt 4
Tampa, Fl 33606
(813) 251-2485
email: KRa1954785@aol.com