An Urgent Call to ‘Active Duty’

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An Urgent Call to ‘Active Duty’

It may sound a bit dramatic to some to call the problems that exist in obtaining effective and adequate treatment for people with eating disorders a “war,” but honestly, for those of us who face this issue daily, it feels like a war. People are dying, finances are depleted, and emotions are exhausted. We are past the stage of mere education and diplomatic relations. The call to “active duty” to all potential “soldiers” is out. We need action.

Each and every person who has been affected by an eating disorder, whether you are an individual sufferer, family member, friend, or treatment provider, can join the fight to win changes that can save lives. You all have a story to tell. Your experiences with discrimination, denial of services, premature discharge, lack of adequate care, and even the tragedy of death will create the evidence needed to plead our case. The time is right, the urgency is legitimate, and the cause is noble.

On a state level, mental health parity (which requires that insurance companies treat mental illness the same way that biological illness is treated) is one important avenue to pursue.

The Challenges

Although the federal mental health parity bill, (The Paul Wellstone Mental Health and Addiction Equity Act, HR 1424,) passed in the Fall of 2008, was a giant step in the right direction, it is not yet in effect. And sadly, it will only cover a small minority of the people with eating disorders in this country because of state laws.

A major drawback for many trying to access care is that the high quality treatment centers they wish to enter are either not “in network” with their insurance company or are considered “residential” rather than hospital-based acute care. This loophole, I believe, is one that has been created to avoid authorizing treatment. By not writing residential care into the policy, the insurance company has the right to say that it is not a documented option, therefore, treatment can be denied.

Also, premature discharge—often at 75% normal body weight—creates a “swinging door” syndrome. Often, the patient is released to a partial or intensive outpatient program (usually at the insurance company”s demand) when they are still not able to manage the home environment and self-regulation during the hours they are not in program. The lack of 24-hour support leads them to “fail” in the program, necessitating re-admittance to inpatient care. Many have been humiliated by being “thrown out” of a program altogether because they were not compliant when, in fact, they were unable to think clearly or manage emotions on their own because of low weight.

Another roadblock is that treatment criteria are often determined and authorized by people who do not understand the complexities and necessities of the illness. Relying solely on weight, abnormal lab tests, or other existing medical conditions in order to authorize admission will often overlook how rapidly these conditions can change. What”s more, other dysfunctional behaviors that could cause serious harm or death are often overlooked. The abuse of laxatives, diuretics, and diet pills can cause dehydration and electrolyte imbalances, which can then lead to cardiac arrythmias and kidney failure. Osteoporosis, EEG abnormalities, endocrine, gastrointestinal and reproductive problems all increase with chronicity. Social isolation, problems in relationships, job absenteeism and school drop-out rates escalate as the illness progresses. Self-harm may increase with feelings of helplessness and hopelessness. Depression and anxiety may increase along with a very real risk of suicide.

Only 1/3 of people with anorexia nervosa and 6% of those with bulimia nervosa receive mental health care. The length of hospitalization has decreased 95% since 1984 despite the fact that repeated studies have demonstrated a correlation between length of stay and positive treatment outcome. There is no denial that treatment for eating disorders is costly, however, research has shown that, over time, untreated eating disorders are even more costly to the sufferer, the system, and society as a whole. Studies have also shown that post-managed care admissions were, on average, characterized by more severe physical symptoms and this, along with premature treatment termination, is linked to high rates of relapse. In short, individuals with eating disorders are being discriminated against, and people are dying because of it.

Worldwide Charter for Action on Eating Disorders

The Academy for Eating Disorders (AED), the Eating Disorder Coalition for Research, Policy and Action (EDC), and the Natoinal Eating Disorders Association (NEDA) are leading a grassroots effort to get the Worldwide Charter for Action on Eating Disorders launched throughout the US as well as the entire world. It has been many years in the making—created by surveys and thorough investigation and collaboration between individuals as well as professional and patient/carer organizations globally. It calls forth six “rights” of people with eating disorders and their caregivers.

The Six “Rights” of The Charter for Action on Eating Disorders

The Worldwide Charter for Action on Eating Disorders calls for people with eating disorders and their carers to have the:

Right to communication/partnership with health professionals

Right to comprehensive assessment and treatment planning

Right to accessible, high quality, fully funded, specialized care

Right to respectful, fully informed, age-appropriate, safe levels of care

Right of carers to be informed, valued and respected as a treatment resource

Right of carers to accessible, appropriate support and education resources

The AED Charter Mission & Action Plan

The Charter also calls upon those responsible for policy and practice to educate and inform the community with programs that:

De-stigmatize eating disorders by promoting the understanding that an eating disorder is not an illness of choice and by raising awareness of the causes of eating disorders

Increase public awareness of the signs and symptoms of eating disorders

Make available comprehensive information about eating disorder services and resources

Connect with the media to provide accurate information on eating disorders and to help shift the culture”s perspective on body image issues and weight and food issues

Develop and implement effective prevention programs targeting schools and universities

Educate and train health care practitioners at all levels in the recognition and treatment of eating disorders to improve the quality of care

Provide sufficient specialist services based on regional need

Provide people with access to fully funded specialized treatment and care

Fund research into eating disorders

Avenues for Action

Backed by the advocacy organizations previously mentioned, anyone who is interested in taking their first steps towards activism will find a willing community of supporters. By becoming an activist, you can promote your own personal healing while “giving back” to others at the same time. Each voice channeled in the right direction is important; many voices can create powerful changes. The following avenues for action are available to anyone wanting to join in a concerted, united effort:

  • Get educated about legislation, either on the state or federal level. Check your state”s stance on treatment parity (equality) for eating disorders, as well as individual insurance carriers” restrictions in care, and exclusion of residential facilities in their policies.
  • Join the NEDA STAR Program (States for Treatment Access and Research) which mobilizes people state-by-state. Email Laura Gregorio (lgragario@nationaleatingdisorders.org for more information.
  • Contact your state legislators and tell them your “story.”
  • Seek out media sources to let the public know of the inequities and issues involved in eating disorder care.
  • Enlighten schools and other educational institutions about the importance of eating disorder awareness, education and adjunct services help prevent eating disorders and aid in promoting early detection.

By Anita Sinicrope Maier, MSW
Reprinted with permission from Eating Disorders Recovery Today
FALL 2009 Volume 7, Number 4
©2009 Gürze Books

About the Author

Anita Sinicrope Maier, MSW is the director of the Pennsylvania Educational Network for Eating Disorders. She may be contacted at pened1@aol.com.

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