Friday, December 19, 2014

Letter to 60 Minutes, Re: Battle for Mental Health Treatment Segment

Dear 60 Minutes:

Thank you for your look inside a world that is terrifying to far too many sufferers and parents of those with eating disorders – the world of capricious and perplexing insurance coverage and denials. An interesting and productive follow-up piece would be the story of what happens when clinicians and insurers put the best interests of patients and families at the forefront. In the case of eating disorders, this means early diagnosis and prompt, aggressive, appropriate-level-of-care treatment. This protocol can take the mortality rate for anorexia from up to 20% down to 3%. In real terms this means reductions of from an estimated 180,000 for a six month stay in a residential facility and more costs for step down treatment to around 7,000 at the low end for a year of intensive outpatient family based treatment. As a bonus one would think insurers would consider this also costs the insurer far less in the long run. Let alone save countless lives, lost productivity and resources. 

The physical complications of untreated eating disorders develop quickly, are very expensive to treat, and require medical management that cannot be denied—these run the gamut from heart conditions to gastrointestinal problems to bones that fracture easily and often to death. Insurers have an opportunity to lead on changing the abysmal outcome metrics for those with eating disorders by insisting pediatricians, primary care physicians and emergency room doctors are trained to recognize the signs of an eating disorder and refer for treatment immediately. And for insurers to insist on increased specialized eating disorder training for clinicians both pre- and in-service. 

We are a coalition of 500 carers, parents and survivors working on advocacy and support respectively. Please visit our 100% volunteer website at www.iedaction.weebly.com to see our current and past actions; and our Facebook group pages. We would be pleased to assist in any upcoming stories. 
The parents, patients and advocates of International Eating Disorder Action and the parents and other carers of Eating Disorder Parent Support

FB: International Eating Disorder Action, Eating Disorder Parent Support
Twitter: @iedaction

Thursday, December 4, 2014

Letter to Health Canada on Advisory Panel on Healthcare Innovations

We still have 24 hours to add Canadian signers to this letter; please leave a comment here or on our Facebook page if you would like us to add your name (deadline noon EST 12/5/14).

Stakeholder Input on Eating Disorders

Submitted: Eating Disorders are deadly, brain-based illnesses with an unacceptably high mortality rate directly related to the lack of services.  For further insight into this, please read Eating Disorders Among Girls and Women in Canada: Report of the Standing Committee on the Status of Women which was just released.

As parents of someone with an eating disorder, the deficiencies in the Canadian health care system in this arena are painfully apparent. Of great interest it is that because the current system is run so inefficiently, more money is being spent to help people only at a late stage of the disease than would be spent if the system were run in a medically and fiscally responsible manner.

The current system, vis a vis eating disorders diagnosis and treatment is analogous to this scenario: A patient presents to a physician with a mole of irregular color and shape. The physician either doesn’t recognize that this type of mole can be dangerous or does recognize it and recommends the patient see a specialist. If the patient sees a specialist, the specialist says, “We don’t intervene this early—we will put you on a list and call you when there is a spot.” Provided the patient lives until the spot is available, the patient presents again and is told the disease is far too entrenched to treat effectively, and in any event, treatment at this stage is so costly there are very few options.

Suggested Innovation #1
·       Provide for adequate training, and continuing education of, physicians, nurses and other healthcare professionals, in the recognition and medical management of eating disorders. (This need not be a costly endeavor. The international group Academy of Eating Disorders has excellent resources on which to base a curriculum and continuing education program.) Note that the current curriculums, which provide only a few hours of training on the deadliest of all mental illnesses, are clearly insufficient.  All training and materials must reflect that eating disorders can strike any gender or age and occur across cultural, ethnic and socioeconomic lines.

Suggested Innovation #2
·       Increased access to Community-Based Partial Hospitalization Programs (PHP) and Intensive Outpatient Programs (IOP).  It is indisputable that early detection and intervention are key factors in the ability for someone to make a full recovery from eating disorders. Beginning treatment immediately upon early diagnosis also increases the likelihood that expensive inpatient and residential programs will be avoided.

Suggested Innovation #3
·       Pursue evidence-based treatments for PHP, IOP and Residential Options. This will acknowledge that in most situations inclusion of families is a key factor for recovery. Family Based Treatment (FBT) is the top choice for adolescents with anorexia nervosa and Cognitive Behavioral Therapies (CBT) are indicated for bulimia nervosa and adults with anorexia nervosa. Given the persistence of, and resistance to treatment in, eating disorders, all programs should provide education for Carers on how to support recovery outside the medical environment; again this is important both from a medical and cost perspective. The Families Empowered and Supporting Eating Disorder treatment (F.E.A.S.T.)  site contains the latest research and citations on treatment protocols.

Suggest Innovation #4
·       Pursue the use of technology in providing services to those in remote locations and for follow up after more intensive treatment—including platforms similar to Skype and phone applications like Recovery Record.

Suggested Innovation #5
·       As the above innovations will take time to develop, increase funding and streamline processes for sending patients to the United States for treatment if a residential option is the only suitable one (as is the case for many at this point as the system has never properly functioned). While this may seem like a high initial cost, it must be noted that the very expensive physical complications of an untreated eating disorder are costing, and will continue to cost exorbitant amounts of money that far exceed that spent on treatment for an eating disorder.

Response to "Eating Disorders Among Girls and Women in Canada" parliamentary report released by The Standing Committee on the Status of Women

We are still collecting Canadian signatures for this letter to be sent ASAP; please leave a comment here or on our Facebook page if you would like us to add your name.

Health Minister
Honourable Minister Rona Ambrose
House of Commons
Ottawa, Ontario K1A 0A6

December 3, 20014

The members of International Eating Disorder Action, (IEDAction) are writing to you in regards to the recently released report from The Standing Committee on the Status of Women: “Eating Disorders Among Girls and Women in Canada.”

Thank you for undertaking the study and allowing the testimony of 30 witnesses and for recognizing eating disorders are serious mental health illnesses. It’s important to be clear eating disorders affect all genders, cultures, ethnicities, age groups and socioeconomic classes.  Additionally, eating disorders have the highest mortality rate of all mental illness. 

Due to the serious nature and the wide-ranging affects on Canadians, we feel strongly further studies should have be undertaken by the Standing Committee on Health. While we appreciate a dialogue being opened, we are disappointed that very little concrete action has been indicated by the report as recently published and are frustrated by the Committee’s recommendations.

We implore your office to put Eating Disorders on the Agenda for the upcoming Joint Provincial, Federal and Territorial meeting of the Ministry of Health. 

Those with eating disorders, and their families, continue to be negatively impacted by the lack of resources, research and funding for these illnesses, which have a high rate of recovery when diagnosed early and treated using evidence-based, best-practice treatment modalities that include families. It is worth noting that early diagnosis and aggressive treatment save substantial money when compared with the high costs associated with the medical complications of untreated eating disorders.

Three areas of immediate need are a Pan Canadian Strategy for Eating Disorders, a National Data Base and strong research programs; currently, the global Anorexia Nervosa Genetics Initiative (ANGI) cannot be participated in from Canada—though the U.S., U.K. and Australia are all supporting this important study.

We look forward to news of a renewed emphasis on finding solutions via the Joint Provincial, Federal and Territorial meeting of the Ministry of Health and we are happy to support this effort in any way possible.


Tuesday, December 2, 2014

Eating Disorders in Canada: Help Needed!

The news from The Standing Committee on Women report on Eating Disorders Among Women and Girls in Canada is not good. A lot of, yes it's bad and no, we don't really have any plans to fix it. As Globe reporter, Andre Picard says, Eating Disorders are a Scourge in Need of a Strategy.

Health Canada is asking for stakeholder input for their Advisory Panel on Healthcare Innovations and we certainly have ideas on how to save both money and lives by revamping the way eating disorders are treated in the Canadian Health system.

We are currently at work on letters to both organizations mentioned and will promote their content via social media once submitted.

Early diagnosis and prompt, evidence-based treatment saves both money and lives--and this is true around the world whether bills are paid via an insurer or a national health system. Doing the right thing should be easy!

Thursday, November 20, 2014

Amy Explains Our Position

Just a little update on the issue with the Philadelphia Inquirer Sam Menaged of Renfrew profile/interview,  and also a bit of my opinion. Unfortunately, we have not heard back from Mr. Menaged at Renfrew. I sent him a formal email last week Friday from the IEDAction admins with our concerns and also noting that we had heard through third parties that he was misrepresented and we wanted to also help them get it right. 

This was before the letter to editor was printed. It's hard to know what people are thinking or doing unless you hear directly from them - so getting messages from third parties isn't really helpful and it also sends a message that our concerns aren't important. Given the size, resources and status of Renfrew I hope that they will take us seriously. The letter went out as the 200+ members if IEDAction with about 50 signatures of the most keen members.

Now my opinion: I do get the sense that advocacy around the nobodies or the non-ED groups like VS, Gap, Abercrombie, Freelee etc. is seen as okay even though it is also a bit marginal to our main goals of developing cohesive eating disorder treatment systems, but advocacy that asks the long-term and sometimes pioneering ED groups to look more critically at how and what they do is seen as subversive. It shouldn't be.

I hope that Renfrew isn't blowing us off and is interested in dialogue. I hope that all our groups are self critical and also open. We have to keep asking and questioning. There is some talk here and there since we started IED action and also other subsequently groups coming up (MAED A & A, glammonitor, etc) that we all have to work together and be on the same page. I think that is a bit simplistic for where we are right now - there is disagreement or lack of agreement on what to work on, there is discomfort with different advocacy approaches, there are undercurrents with lots of back chatter.

This all might be good stuff if it keeps the agenda moving ahead. I also am aware that lots of work has been done and there are lots of good people who have done it. But I ask that the old guard recognize that the new guard is coming up fast and strong and just like you we want change and are willing to invest in that. But our experiences are different. And the tools we have are different. And we might disagree with each other and the more established players. 

The really cool and wonderful happening is that with social media we are able to engage people as never before. They come on board because the action resonates with them. They stay on board because there is a place now for them to have a voice (all of these groups) and those impacted by ED can sometimes for the first time be heard and also use their experiences to impact policy. So while I realize that some of our actions make people uncomfortable, our intention is to continue to insist on correct and responsible information in the media and from ED 'experts' of all types, and to engage with groups to help get effective, accessible, evidence-based systems in place for early diagnosis and treatment and working with any and everyone we can get to pay attention. 

How we get there is not clear but that is the vision at least from my side and I hope we can solidify that in partnership with F.E.A.S.T.http://letsfeast.feast-ed.org/and others.

Philadelphia Inquirer Letter to the Editor re: Sam Menaged Interview

Understanding complexity of eating disorders 
An interview with Renfrew Center founder Samuel E. Menaged did a disservice to efforts to raise eating-disorder awareness ("Helping women who hurt themselves," Nov. 10). While it's positive to bring awareness to these deadly disorders - which have the highest mortality rate of any mental illness - the article focuses on sexual abuse, low self-esteem, and traumatic events as causes of eating disorders. While these can make it difficult for a person to recover from an eating disorder, there are no studies that show these factors cause eating disorders. What was most concerning was that there was no mention of biology and genetics, which current research points to as an underlying factor for many patients with eating disorders.
Outdated information with no empirical basis makes eating disorders seem as if they are diseases of choice and not the serious, life-threatening, brain-based illnesses they are. This can prevent lifesaving early diagnosis and intervention. It perpetuates a view of eating disorders that is faulty and dangerous.
International Eating Disorder Action (iedaction.global@gmail.com) - of which I am a member - includes activists whose lives have been touched by eating disorders, either personally, professionally, or through a family member. We are trying to combat pervasive misconceptions society has about eating disorders that negatively affect access to evidence-based treatment and insurers' willingness to pay for treatment.
|Faith Yesner, Media

Friday, November 14, 2014

Pushing Back on Outdated Information: Target--The Philadelphia Inquirer

Recently a piece ran in the Philadelphia Inquirer that was distressing. The piece is an interview with Sam Menaged, founder of Renfrew; much of what he said was taken out of context and their are also things he said (if the quotes are correct), that are concerning. As IEDAction believes that popular opinion influences policy, we felt contacting the paper was in order, and have sent this letter, signed by many advocates, to the editor of the business section, as well as a shorter letter to the editorial page editor we are hoping will be published.

Dear Mr. Toolan,
The interview, “Helping Women Who Hurt Themselves” in print and "Helping Those with Eating Disorders" online, written by Jane M. Von Berg in the Philadelphia Inquirer (11/10/2014) in which she interviews Renfrew founder Samuel Menaged did a disservice to the cause of eating disorder awareness. While it is positive that the Philadelphia Inquirer is covering eating disorders and bringing awareness to these deadly disorders (with the highest mortality rate of any mental illness), it is concerning how over-generalized and outdated the information was.
The piece mentions sexual abuse, low self-esteem and traumatic pasts as causes of eating disorders. While these circumstances can make it difficult for a person to recover from an eating disorder, there are no studies that show the factors stated cause eating disorders. What is most concerning is that there is no mention of biology and genetics in relation to development of an eating disorder. Perhaps this was covered in the interview and did not make the final edit.
Current research is showing that eating disorders have a biological underpinning and genetics account for up to 50-60% of the variability. A review published in issue 6 of 2014 Journal of Clinical Epidemiology  synthesizes some of the latest research regarding the biology and genetics of eating disorders.
Publishing incorrect and archaic information has far-reaching effects you may not have considered. Of those who read your paper, this may be the first time many are learning about eating disorders; this piece would provide them only with outdated theories for which there is no evidence. The tremendous danger of outdated information with no empirical basis is that it perpetuates society's misconceptions of eating disorders. It makes eating disorders seem like they are diseases of choice and not the serious, life threatening brain-based illness that they are; this can prevent life-saving early diagnosis and intervention. It perpetuates a Lifetime TV view of eating disorders, which is faulty and dangerous.
The pervasive misconceptions society has about eating disorders negatively impact access to evidence-based treatment and willingness of insurers to pay for treatment. According to the Eating Disorders Coalition, only one out of ten people receive treatment for their eating disorder and 50% of insurance companies cover only hospital care to stabilize a patient with no additional follow up treatment. Like treatment, equitable funding for eating disorder research is impacted by these misconceptions. Eating disorder research is dramatically underfunded when compared to other conditions, especially when adjusted for number of people affected. Misconceptions may not be the only reason for underfunding of research, but they are certainly not helpful.
Please consider running a piece in your newspaper to correct the misinformation that was published in the interview mentioned above. Thank you for consideration of this matter and we look forward to a dialogue on how to turn this into an overall positive by sharing the dramatic new knowledge recent research has yielded.


International Eating Disorder Action

Jennifer Denise Taunton Ouelette, San Diego, CA
Amy Elizabeth Cunningham, Dar es Salaam, Tanzania
Evelyn Gurdin Cohen, Albany, NY
Louise Stoward,Tasmania, Australia
Lisa Springer, Cloverdale, CA                                    
Julia Fuentes, Tucson, AZ
Faith Kandel Yesner, Philadelphia, PA
Sandra Gotlieb Willett, Fredericksburg, VA
Lauren K Masseron, Baltmore, MD
Alyson Carroll Earnest, Carlsbad, CA
Kelly Eagan Ballard, Durango, CO
Suzannah Nelson, Peterborough, Ontario, Canada
Deb Schenck, Wichita, KS
Jen Haken, Blewbury, UK
Mary Beth Irwin,Ridgefield, CT
Veronica Luccioni, London, UK
Karen Berner, Tampa, FL
Anne Birckelbow, Linden, MI
Rob Smith, Camden County, NJ
Angela Thomason Webb
Bridget Whitlow
Sheryl Sitman, Israel 
Penny Lawrence, Merced, CA
Diane Koplar Vaccariello, Homosassa, Florida
Gabriele Pfister Matthewman, Godalming, Surrey, UK and Alexandria, VA
Fran Warkow, Kansas City, MO
Eve Musby, Glasgow, Scotland
Rhonda Nunnally Brownrigg, West Plains, MO
Mia Elena Lopez Cox, Santa Maria, CA
Carolyn Dower, Austin, TX
Kelli Allen Masri, Corpus Christi TX
Lisa Guimont, Orangeville, Ontario, Canada
Leslie Richmand, Plainsboro, NJ
Sarah Hale Wilcher - Kansas CIty, MO
Melissa Sherman Francis, Middletown, RI