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EOEDs

 

… it’s not “just a phase”.

 

Potentially life threatening medical complications are ‘common’ in children affected by early onset eating disorders (EOEDs), a study reported in the Medical Journal of Australia has found.

 The first prospective national study of EOEDs also revealed major limitations in current diagnostic criteria, possible missed diagnoses and a need for better education of health professionals. The study examined data from 101 cases of EOEDs in children aged five to 13 years, and found that 78% were hospitalised with an average length of stay of almost 25 days.

Study co-author and leading child psychologist Dr Sloane Madden, from Westmead Children’s Hospital, said the results show younger children with EOEDs are presenting with severe disease. “Only 37% of inpatients in the study met the current diagnostic criteria for anorexia nervosa, yet 61% had potentially life threatening complications of malnutrition and only 51 % met the weight criteria,” Dr Madden said. “This suggests the current criteria for diagnosing anorexia nervosa in young children are limited.”

An editorial on the study in the same edition of the MJA highlighted that about a quarter of cases in the study were boys. Editorial author, Foundation Chair of Mental Health at the University of Western Sydney’s School of Medicine, Professor Phillipa Hay, said “The relatively high proportion of younger boys with EOEDs contrasts with men accounting for about one in ten adult cases of anorexia nervosa and bulimia nervosa,” Professor Hay said. “More research is needed, but the work by Madden and colleagues supports the hypothesis that EOEDs may differ in important ways, including sex distribution and course, from eating disorders with onset in adolescence and adulthood. “It is imperative that research attention is now directed towards understanding why such young children are developing severe eating disorders and how effective identification and treatment can be targeted earlier.”

-SourceMedical Journal of Australia

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Umbrella Erin Hael

Anyone involved with eating disorders knows all too well the commitment, expense, and time that treatment and recovery encompass. There are no quick fixes on this journey towards reclaiming ones’ Life back from a devastating illness that can lead to chronic health debility and even death if left untreated.

Just mention the word “insurance” to anyone acquainted with eating disorders and you will undoubtedly get a credible grunt of frustration or despair when it comes to what insurance companies “allow” for treatment and follow up care. And for those of us who have loved ones requiring the most intense level of care in either residential ED programs and/or partial-day programs for any length of time, insurance becomes yet another demon to lock horns with; and certainly not what caregivers, families and sufferers need tacked onto an already onerous battle to save someones Life.

We have had many a battle with insurance to get our daughter the care she deserves, and to push beyond the bullying that desperate parents face when told your child cannot get the medical services s/he needs until you’ve taken out a second mortgage, gone bankrupt, taken out exorbitant loans because extended coverage was denied, but by all Dr recommendations is absolutely necessary in continuing care and treatment.

The manner at which eating disorders are covered by insurance (and obtaining equal access to quality care is another needle-in-the-haystack!) is still quite crude that my blood boils when listening to parent after parent exhaustively stating the same heartrending scenario over and over. And speaking with parents and sufferers outside the US, you find some of the same- sometimes even worse.

Well, after stating all this rather negative reality, there is some hopeful news to share with the now infamous New Jersey Blue Cross/Blue Shield class action federal court case which restores my belief, coupled with the progression of Mental Health Parity, that 2009 will continue to move forward and keep chipping away towards change in improved coverage and treatment of eating disorders that is well overdue:

 
January 10, 2009 Horizon Blue Cross/Blue Shield of New Jersey has tentatively settled a class action pending in federal court in Newark, New Jersey involving reimbursements for medical expenses relating to the treatment of eating disorders. The terms of the settlement must still be approved by the court.

Although Horizon covered treatments related to eating disorders (primarily anorexia and bulimia), including hospitalization, outpatient treatment, psychotherapy and nutritional counseling, there were benefit limits on such treatments.

Under the settlement terms, Horizon has agreed to pay claims for eating disorders that were denied because they exceeded the plans’ maximum benefit for non-biologically based mental illness.
Horizon has also agreed to give parity treatment to eating disorder claims for Horizon insureds in the future and to enhance its appeals procedure by providing the right to select review by an eating disorder specialist of all claims denied on the basis of medical necessity.

 

I love fall!

I love our annual trip to the apple farm, the continued but slowing scramble to farmer’s markets until they close shop next month, the cool nights and the warmth of a wood-fed fire pit surrounded by the deep and intoxicating smells that this season brings along with it. The cornstalks soon to be put out along with the vibrantly hued pumpkins, the trees’ deciduous leaves now changing in accord… it’s a sensory orgasm!

Last week seemed a bit more hectic, balancing home, family and a personal work-life in conjunction with extended family and friends for our annual Late Summer-Fall Equinox potluck. But all the work and preparations reminded me how vital it is reconnecting with others whose lives are busy like ours, whose children are growing and/or grown, and gather for one evening to celebrate the change of season, share a bountiful meal, taste new creations, revisit old favorites and maintain some deeper meaning within our lives.

A couple of weeks ago I was inspired to see BANA (Bulimia Anorexia Nervosa Association) holding it’s Global Dinner Table Conference (wonderful titled theme!) and extending efforts to educate and connect within the Ontario region with spokeswoman, advocate and eTalk journalist Ms Sophie Gregoire-Trudeau presenting a powerful personal journey through recovery from bulimia. Now as a healthy mother, wife and proponent for eating disorders she stated quite beautifully: “healing means reconstructing your notion of self, and who you are, and your connection with the world”.

BANA is one of a handful of grassroots organizations that actually carries out valuable, useful support and services instead of only allocating funds-donations and collecting data, along with having a vital partnership with the Local Health Integration Networks (LHINs) that is broadly interconnected with hospitals, medical communities, local demographics, schools and universities to align more effectively with clinicians and the broader public to reach those in need and provide support for families.

Another organization of note that has recently joined earlier this month at the “global table” is BEDA (Binge Eating Disorder Association) which can be additionally pivotal towards connecting those whose diagnosis is either “undefined” “unspecified” or completely overlooked towards the resources they need, and continue providing the educational and preventative services as well as highlighting probably the most common form of eating disorder more broadly present.

It’s aspiring to see such organizations take root and develop, gathering together as a unified front to fight an illness that has left far too many for too long uninvited or unheard to now join at “the global table” to come together!

 

 

“O Autumn, laden with fruit, and stained
With the blood of the grape, pass not,but sit
Beneath my shady roof, there thou may’st rest,
And tune thy jolly voice to my fresh pipe;
And all the daughters of the year shall dance,
Sing now the lusty song of fruits and flowers. “
– William Blake

Advocacy

“It’s about opening up the doors and ending the shadow of discrimination against the mentally ill.”

-Patrick Kennedy 

Today’s news is quite uplifting.   And the 268-148 vote does speak to the dire need to continue towards enacting mental-health parity and mandating health insurance coverage equal to that of physical illness for mental health  and addiction.  I think Paul Wellstone would be encouraged to see some progress being made after nearly a decade of back and forth bi-partisan bickering and huge corporate influence , (and currently, to no one’s surprise, big-ph-arm Eli Lilly  is really throwing a tantrum!), to strangle this vital legislation.

And there are plenty of critics who are rallying this victory as “mental-health insanity” and clearly looking only at their own financial dunk, but it’s truly time to stop stigmatizing those with mental illness who clearly need the same standard of quality care and treatment that any sane society would not withhold or financially ruin one with personally while working towards full health, healing and recovery.

I, unfortunately live in a state that does not currently have mental-health parity- yet.  But I was impressed to read an in depth study done last spring by the La Follette School of Public Affairs in our state, that despite not having all the conclusive data to make absolute recommendations regarding mental-health parity, has incredibly convincing and thought-provoking details putting to bunk some of the primary reasoning against implementing mental-health parity that I would encourage anyone interested in advocating for mental health disparity to read.   These studies really can be applied and adapted for further critique and implemented across all states, so that we will eventually see more than thirteen states that have adopted mental-health parity law.

-shanti

Continued studies, most recently published by Dr Mark Zimmerman for Methods to Improve Diagnostic Assessment and Services (MIDAS), and additional colleagues of both Rhode Island Hospital and Brown University, indicate that the current DSM-IV lacks adequate “diagnostic criteria for eating disorders”, and that “researchers recommend a broadening of the criteria” since currently only anorexia and bulimia are “officially recognized and formally defined”.

Makes definite sense.  Especially since DSM-IV was published back in 1994, and in reading the current DSM-V “white papers” , “DSM definitions are virtually devoid of biology, despite a large body of research that indicates a neurological basis for most mental disorders”.  And that for over the past ten to fifteen years, there has been a steady increase of research and findings developed within eating disorders expanding beyond just AN and BN, but also EDNOS (Eating Disorder Not Otherwise Specified) which counts for “more than half of the patients in treatment centers”, as well as Binge Eating, COE (Compulsive Over-Eating), and other “subthreshold variants” that clearly expand the scope of eating disorder symptoms and diagnosis.

From what the DSM-V timeline indicates, this much needed and updated manual will be published sometime in 2011, which seems like an eternity for many of us already too familiar with the complexity of eating disorders and more often inadequate care/treatment of our loved ones. 

So it’s encouraging to see the continued efforts and commitment of researchers and clinicians in the trenches (along with the rest of us!) collecting the data, and analyzing the results for peer review, publication, and improved teaching/training- which ultimately leads to better treatment and recovery options for those in need.

End Health Discrimination
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