What Is Being Done for Those Whose Eating Disorders are Entrenched?

[I originally changed the title of this to Part 1 because I've been adding material to this piece after I published it to my blog.  However, rather than create Part 2 to discuss what I have learned, am learning, hope to learn about the treatment of those with entrenched eating disorders, I decided to post a separate blog report about the Third Annual Conference of the California San Diego Eating Disorder Center that was held in La Jolla, Callifornia on February 25-28, 2016.  Access the first in a series of eventually three parts here.]

Much important and so necessary attention has been directed towards diagnosis and treatment of adolescents and even youngsters under the age of 10.  I'm a huge supporter of the work being done by so many around the country to get legislation passed nationally and state by state to make certain that eating disorders are legally recognized illnesses the treatment of which should be covered by health insurance to the same extent as other illnesses such as cancer, tuberculosis, multiple sclerosis, arthritis and so forth - including, for example, on-going visits and tune-ups.  I've tried to be active locally in our state, as well. And, of course, I've continued with my blog although I, too, have struggled with burnout. Bottom line:  the sooner the illness is addressed, the better.

Having an adult family member with a long term and entrenched eating disorder has led me on a protracted search to find help for her and to call attention to those who work with her that a different more comprehensive approach is needed.  Sometimes I've felt like I'm hitting my head against a wall because so often her treatment providers have turned to the list of her co-morbidities and tried to address those independently because over time nothing else has seemed to work.  These days attention is being paid, importantly, to her state of physical health and status; however, not much other progress is being made. 

However, as I've also noted in posts on my blog, how to approach and treat an adult with a newly diagnosed or an ongoing eating disorder is not well understood.  I've highlighted the relevant articles in the first subject in my site's Index - "Adult eating disorders and recovery tools" that the reader will find on the right side of my website.   I've offered suggestions of some things that have seemed to make a difference like the establishment of a team and the inclusion of a recovery coach.  I've noted that any patient and especially an adult in outpatient treatment must have a cohesive treatment team; not one that is fragmented.  The question of how to therapeutically approach the treatment of an adult with an entrenched eating disorder accompanied by other diagnoses, especially by what is called Borderline Personality Disorder (a misnomer and more appropriately defined as emotional dysregulation), remains elusive.  

Currently I am reading The Biology of Desire - Why Addiction Is Not A Disease by Marc Lewis, PhD (Public Affairs, a member of the Perseus Books Group, 2015).  As readers of my blog know, I believe (speaking as one who recovered from a 15 year bout with bulimia/anorexia) that eating disorders are brain disorders.  From that basic point I think that it is the thought patterns and therefore behaviors associated with eating disorders that become addictions and from there, as discussed by Dr. Lewis in his book, compulsions. I believe as Dr. Lewis does that there is hope.  One possibility is that which he discusses on pp 214-5 - involving Reach Out for Recovery and the city of Birmingham in the UK - effecting change by having resources at the ready and known to the person (and/or his/her family) with an addiction when the person finally has had enough and wants to change.   He refers to this as a "developmental approach."  He notes on page 213, and again I refer back to Kathryn Hansen's book Brain Over Binge, "....What will work best is whatever is available when the synaptic avenues of desire make contact with brain regions responsible for prospective change....Quitting requires a merger, perhaps a collision, between desire and perspective - again, what fires together wires together...."  Whether this experiment in the UK can be applied to those with eating disorders is another question. Incorporating and involving  community resources such as Smart Recovery, AA, and eating disorder support groups or even local chapters of eating disorders associations would be a good first step. 

Recently, I was deeply moved to read the first in a series of articles written by Jeanene Harlick.  These past few days, because of a discussion around an article that struck me as as much a statement about how eating disorders affect family members as it is about how to respond to as well as how to find appropriate treatment for those diagnosed, I've gone to Ms. Harlick's website:  www.adisorderedworld.com  to re-read her first piece and to read the second, as well.

Her first piece, "The Eating Disorders "Residential Treatment Industrial Complex": Harm or Help? Part 1 of an Investigative Series," not only recounts her experiences through the years in treatment but also, and so importantly,  underscores the fact that treatment for older individuals whose eating disorders are entrenched is terribly lacking.   I've read her first piece twice now and the similarities to my family member's experiences and accounts are truly heartbreaking although my family member has often said that certain aspects of her treatment like someone sitting with her while eating and monitoring her after eating were very important to help her break the ferocity of her bulimia.  The term non-compliant has been especially jarring knowing how much my family member's self has wanted recovery.

At the same time, Ms. Harlick's article is encouraging because through interviews with some of the top researchers in the field, she reveals that they are starting to turn their attention to this thorny issue.  I am particularly encouraged by the knowledge that Dr. Cynthia Bulik is investigating other approaches similar to what has seemed to work better for my own family member - person-centered or an individual approach to treatment.   However, finding someone with the patience to continue to work with my family member has been difficult.  At one point, a couple of years ago, almost her entire team quit on her.  She was shocked and demoralized.  Fortunately, three members of that original team have stood by her but the question remains, how to assist her into recovery she seeks when the illness within her rejects help offered?

Ms. Harlick also draws attention in her first piece to the Residential Eating Disorders Consortium and the Commission on Accreditation of Rehabilitation Facilities (CARF).  As she notes, "CARF eating disorder accreditation requires, among other things, that programs provide only evidence-based care - including, for adults, the forms of therapy proven effective in Touyz et al studies that employ staff with higher levels of specialty training and experience, and pay greater attention to clients' unique needs and history as well as socio-economic circumstances, career goals and quality of life."  [Note that the link to the article by Stephen Touyz and Phillipa Hay indicates "Open Access."  I hope this status continues for this piece is incredibly important.]  The guidelines also call for "....more cooperative, collaborative treatment plans."  She also notes that "....so far only six programs have obtained the CARF eating disorder accreditation."  This is encouraging, actually.

She closes with personal comments that I have heard from my family member, too.  I know that my family member craves recovery because she continues to say so.  She also gets hungry and she also tries to eat but then purges when she is overwhelmed by how she feels inside.    My family member also dwells on so many of what others have called her failures.  As she has commented, "...why try again when I know I will fail?" I believe it's not the individual who has failed, but the treatment approach. 

Ms. Harlick's second article, "Buyer Beware - Behind the Smoke and Mirrors: How Residential Treatment is Being Sold as 'First-Line' Treatment for Severe Eating Disorders Despite Research Backing; The Problematic Variation in State Licensing Standards and Oversight Across States; and Whether Accreditation is Really a Remedy to the Lack of Quality Control" takes a look at, among the issues listed in the title, one of the points (re data) among the five raised by Dr. Russell Marx in his opening remarks at the start of the 2010 NEDA Conference I attended in New York City.  

Regarding the issue of data and data standards, these  are wrestled with in many fields globally.  I am somewhat familiar with the issue of data standards because of my husband's work at the Critical Path Institute.  I refer you to, for example, the Austin-based outfit CDISC  with which C-Path collaborates.   Collection of accurate data and the development of uniform data standards is definitely needed within the eating disorders treatment world.

However, much progress is being made and as I heard years ago during a presentation, it's important to "keep your eyes on the prize."     As Ms. Harlick points out in her second essay, the population of those diagnosed with eating disorders is small; those who reach partial recovery is smaller and of those who are entrenched is smaller still.    I believe it's critically important to ferret out what works from what doesn't and to continue to push for early diagnosis and treatment so that fewer and fewer individuals (few already) become entrenched and more go on to recovery earlier and solidly.  One of the ways we can work together to make this happen is through legislation like that mentioned in my previous post.

There will be those naysayers who will latch on to anything that will defeat this legislation.  We must work together to publicize what does work so that anyone diagnosed can receive early diagnosis and treatment that is covered by insurance.

Update [7/2015] re Eating Disorder Legislation Nationwide including another visit to the Arizona Legislature on February 28, 2015

Updated March 2016

Two years ago on April 17, 2013, I traveled to Phoenix to attend a rally and to speak to legislators during a briefing sponsored by Arizona State Senator Katie Hobbs.   I wrote about my trip here.  

Senator Hobbs, with the assistance of the National Eating Disorder Association's STAR Program Manager Kerry Dolan and STAR advocate Angela Bernhardt, began work on legislation that Senator Hobbs presented to the State Legislature during the 2014-15 session.  The  proposed legislation was referred to the  Health and Human Services Committee, Senator Nancy Barto as chairperson, where it died for lack of support.

A progress report that appeared in  the Phoenix area newspaper The Foothills Focus on February 25, 2015, and written by Lauren Potter can be accessed here.    Among the points noted,

 "....Hobbs’  proposed bill SB1427 ... propose[d] an eating disorders study committee be established to assess the impact of expanding the insurance coverage of eating disorder-related treatments. The committee would also study the demographics and prevalence of eating disorders in Arizona, as well as their economic impacts."


Rather than let the matter drop, Senator Hobbs and Senator Catherine Miranda presented a resolution - Senate Resolution 1003 -  to the assembled legislators in session on February 28, 2015.  Angela Bernhardt and I were introduced to those present.   The resolution was voted upon unanimously and accepted.  By clicking on the words "Senate Resolution 1003", the reader can access the text of the resolution.  The National Eating Disorder Association (NEDA) issued a press release about the resolution along with activities in other states including Ohio (particularly the cities of Cincinnatti and Cleveland) and Utah.  The NEDA press release can be found here.

Many of us are hopeful that legislation will be proposed again this next year.  Work is needed to develop relationships and understanding with those who have the power to advance the legislation beyond the subcommittee. If a reader knows of a Republican legislator who has expressed interest in this legislation or even has a personal connection with someone who has an eating disorder, please pass along the information.

Meanwhile, many advocates were thrilled to learn that in June, the State of Missouri passed legislation - SB 145 - that that requires coverage by insurance companies for the treatment of eating disorders. More information can be gained at the Missouri Eating Disorders Association advocacy website.  Here is the text of SB 145.  

In addition, on the national level, the Anna Westin Act - HR 2515 - has been introduced in the House thanks to the co-sponsorship by Congresswoman Ileana Ros-Lehtinen (R-FL) and Congressman Ted Deutch (D-FL).  The Eating Disorder Coalition has continued to provide updates on the progress of this Act.  Today's update includes the news that former Congressmen Patrick Kennedy and Jim Ramstad expressed intent to include eating disorders and residential treatment in the Mental Health Parity.  Here is the link to their letter of support directed to the co-sponsors.    And, here is the text of HR 2515.  

Update:   The Eating Disorder Coalition announced today (7/28/2015) that Senator Kelly Ayotte (Rep, NH) has been joined by Senator Tammy Baldwin (Dem, WI), Senator Shelley Moore Capito (Rep, WVa), and Senator Amy Klobuchar (Dem, MN) in support of a Senate companion bill to HR 2515 introduced by Senator Ayotte earlier this year.

Meanwhile, I am working on my three-minute presentation to Legislators on The Hill in Washington, DC.  Again, if my and my family member's story can lead to legislation calling for adequate care upon first diagnosis, what a difference that would make!

Another update:  today (March 17, 2016) the Eating Disorder Coalition announced that the key provisions from the Anna Westin Act passed the Senate HELP Committee today.

One step at a time......

What about HIPAA and How to Overcome Barriers

In the process of being revised.  3/29/19

The basic information about HIPAA can be found at the following links:
Here is a link to the latest information about HIPAA as it applies to individuals and family members seeking health information.  There is a FAQ link, as well.  Specifically, here is a link for family members.

Here is a link for personal representatives.

Here is a link to a FAQ fact sheet for individuals.

Yet, see below for exceptions.  Know these exceptions.  Know that you have the right to communicate information to your loved one's doctor(s), therapist(s), nutritionist, and psychiatrist, etc.  HIPAA does not prevent you from politely calling/contacting them, noting (especially if a Request for Information has not been signed) that you realize they cannot reveal if they are treating your loved one but you are requesting that they listen to what you are offering about your loved one's behavior, their health, and so forth.  A best practice on your part would be to tell your loved one you are doing this.  

[As many of my readers know, I often comment about articles and/or provide commentary by others when the opportunity arises.  A helpful article appeared in the NAMI Advocate but the link seems to have changed.  I am currently researching the latest links on this topic.]

By now many families with adult children (or soon to be adult children) who are struggling with a diagnosis of an eating disorder and/or a co-existing mental illness have heard of HIPAA - the Health Insurance Portability and Accountability Act.  Undoubtedly, you know about it because any visit to a health care provider by you or a family member includes the requirement that you read and sign a document noting that you understand what the provisions mean.  If your loved one is a minor, you will be included in the conversation but not necessarily included in sessions so your loved one's therapist can build a therapeutic alliance or relationship.

In fact, all too often since this Act came into existence health care providers (physicians, therapists, psychiatrists and others) believe they must not communicate at all with members of an adult person's family unless a release has been signed by the patient; and the term "communication" includes the family providing information it feels is critical for the provider to know.

A groundswell of resistance and objection is building.  There are situations when HIPAA can be bypassed.

This topic was raised during the recent (March 17, 2019) F.E.A.S.T. of Knowledge conference in New York City and it appears that a task force will be formed to investigate and lobby our legislators about this topic.

Here is the latest update found on the NAMI site (2018) re health information sharing.

The Winter 2014 NAMI Advocate  included an article by Stewart Newman, M.D. and G. Ness Matthew Gabay, J.D. titled Understanding HIPAA:  Individual Privacy and Family Communication.  (pp. 20-21)

The authors provided the news that Rep. Tim Murphy (R-PA) "....introduced a bill in Congress that would make families the legal personal representatives of those they care for, so that providers are free to communicate with or without [italics mine] a release of information." (p. 20)

All to often, as I and many others have discovered, many providers refuse to communicate with family members even if the conditions are appropriate.  The authors refer to this as a "culture of silence." They state, and I emphasize in bold, "engaging the family is a therapeutic best practice."  

Providers instead think they cannot and should not communicate at all with family members.  This needs to change and in some cases is incorrect already.

What those of us with family members struggling with eating disorders or mental illness have come to understand is that the adult with a biological brain disorder all too often isolates, will not reveal that they are suffering (to the point of having suicidal thoughts), and sometimes ultimately in despair will try or succeed to take their own life or lives of others. 

Those of us with ill adult family members often are faced with an individual who refuses a recommendation that they seek inpatient or residential care.  I addressed the concept of an outpatient "team" in a previous post and provide a link here.  The bottom line, though, is that all the team members must communicate to be effective providers of care for their client. 

And again, "engaging the family is a therapeutic best practice." 

The authors quote Tom Insel, Director of the National Institutes of Mental Health - "If you look at those things that help to build resilience ... one of the best is simply getting families involved."  Indeed,  the National Alliance on Mental Illness (we have a NAMI chapter here in Tucson and many communities do as well), has been a long-time supporter of family involvement as evidenced by  Family to Family, Back to Basics and other programs offered.  I attended the Family to Family program and "graduated" with a huge amount of information to help me advocate for my loved one and understand her illness and the illnesses of others better.  Check with your local chapter if it offers this class.

So, why is it so darned difficult to break through the walls?

In response to that question, NAMI Oregon - a fantastically active state organization if one looks through all the achievements listed on its website created a Checklist for Parents and Families of People Living With Mental Illness to Assist in Communicating with Treatment Providers.  Here is the link but I notice that it does not have an https classification.  You can access it separately (I just did).  

However, to continue this discussion:  There are three sections of the checklist for parents and families and each asks a series of questions and issues a family must address and find the answers for.  My comments are in brackets.

For example, the first section begins with "For all persons with mental health issues, families should request the following (5) questions.  One is "Has the provider reviewed the records of previous mental health providers and communicated with all others who are involved with the persons' treatment and care (e.g. therapist, family physician, case manager.)"?  
[This question is terribly important because at least in our family's experience, records are kept by the previous therapist or doctor or treatment center and are not released unless there is a signed release by the patient.  Often family members automatically assume that records go along with the patient - not so.  Your family member must sign a release.]

The second section begins, "Where an elevated risk of suicide is identified in persons involved in treatment, families have a compelling interest to learn the following" and an example from the list of 6 questions is, "What is the provider's evaluation of suicide risk in this case?  What are the particular warning signs (not the same as risk factors) for suicide in this person's situation?  What steps should the family take if they see these factors occurring (e.g., taking the person to the hospital for reassessment)?  You may wish to ask the provider to help create a plan to monitor and support the family member.  What protective factors exist, and how can these be expanded or enhanced for this person?"
[The family members have an absolute right to be certain that their adult child is receiving the best possible care and is not falling through the cracks.  If the provider does not know the particular warning signs in your loved one, insist that they find out.]

The third section begins, "When the person is at a university or similar setting, the family may wish to ask the education professionals:" and an example from the list of 2 items is, "What systems are in place to support students living with mental illness and to help them avoid self-harm? ...Are the health service and/or counseling services on call 24/7, and if not, what are their hours?  Is there a 24-hour number to call in case of emergency?"
[The same questions might apply to an individual who is living in a therapeutic community or a group home.]

In closing, as the authors state in their article and I have repeated many times in posts on this blog, "Whether the individual agrees or not, nothing [should] prohibit a family member from speaking with the provider to share information, and nothing [should] prevent the provider from listening."  

As was stated by a mother at the F.E.A.S.T. conference in Dallas (2014), our task is to communicate in a way that opens doors and ears for too many providers still do not understand eating disorders.  We can change that, one step at a time

in August 4, 2015: A bipartisan move by Senators Chris Murphy (D-CT) and Bill Cassidy (R-LA) to introduce the Mental Health Reform Act.  Among the important provisions is to "clarify HIPAA to ensure that families of people with severe mental illness have access to critical information concerning their loved ones."

Update November 5, 2015:  I learned in conversation that a facility can reveal whether or not a family member has been admitted to the hospital or to the ER.  There are guidelines provided on the HIPAA website.  Here's one that may be of use to readers:

Update March 29, 2016:  USA Today published an article on this controversy.  You can read it here.

Eating Disorders - Pulling Knowledge Together - Carrie Arnold, Kathryn Hansen and Marya Hornbacher

Several people who’ve been in recovery for quite some time have thought and written about eating disorders (and co-morbidities), including me (here in my blog), from a variety of perspectives and have taken the time to consider and then share what we’ve learned that apparently made a difference.  

For the purposes of this post,  I’m specifically thinking of Carrie Arnold, Kathryn Hansen, and Marya Hornbacher. 

Kathryn Hansen, Carrie Arnold and now Marya Hornbacher with her work in progress have taken/are taking this discussion to the next level.  I know there are many others who have written memoirs on this subject; yet I am focusing on these women because their work is taking our knowledge of eating disorders to the next phase of understanding what's going on in our brains and possibly why; how we think and why.  They are/will be sharing their knowledge in an easy, conversational style to help those of us who are not scientists understand scientific concepts and developments.

Their work is important because until as recently as 2010, prominent people in the field of eating disorders were lamenting that new knowledge about eating disorders could take years and years to reach the eyes and ears of those who can help make a difference, particularly in residential treatment centers, in doctors' and therapists' offices and in homes where parents and other family members are employing the latest thinking and techniques to help their family members get going on recovery.  

The electronic media is serving to speed up this process.

Few are familiar with Kathryn Hansen’s book Brain Over Binge, Camellia Publishing, 2011, possibly because of the concept of the “tipping point" made so popular by Malcolm Gladwell in his book,  The Tipping Point: How Little Things Can Make a Big Difference first published by Little Brown in 2000.   Since she has now developed a workbook to accompany the book, perhaps her ideas are catching on.   Kathryn's work preceded much of the literature about the brain and eating disorders, some of which I learned in a course I took here at the University of Arizona and wrote about here on my blog.  Kathryn published her book in 2011.  Since then information has started to tumble forth and people, who are coming to understand better, are paying attention and advocating for change through legislation.  After I read her book, I wrote something of a review incorporating additional information and examined what she wrote here.   From the book cover, I pull the following:

After six years of chronic binging and purging, Kathryn Hansen stopped her eating disorder independently and abruptly, using one tool and one tool only:  the power of her own brain.  In Brain over Binge, Kathryn traces the course of her condition and describes in detail her unconventional approach to recovery.  In the process, she offers a much-needed alternative perspective to the canvas of eating disorder literature to help others struggling with any form of binge eating.

The mainstream view of bulimia holds that is is a disease that manifests as a means of coping with deep underlying emotional problems.  But the author persuasively argues that in her case, this philosophy actually encouraged more binge eating.  For her, it really was about the food.  Kathryn's candid account cuts through the confusion she experienced in traditional therapy and simplifies both the origins of bulimia and its cure in a fresh, intriguing, and always clear voice.

Brain over Binge is a brave book that will help many by delivering an informed and inspiring message of free will, self-reliance, and self control.

She provides more information about her personal recovery process at her website here.  Note again that her book was published in 2011 and since that time much, much more has been revealed about the brain and genetics.  However, her book offers a powerful perspective on how important and effective a change in behavior can be.

In summary, if you haven't found a way to overcome your bulimia or help your loved one overcome bulimia, take a look at this post here on my blog:  

Many people are hailing Carrie Arnold’s book, Decoding Anorexia: How Breakthroughs in Science Offer Hope for Eating Disorders, Routledge, 2013, as a major contribution to the understanding of eating disorders.

Following are two excerpts from the book's cover.  The first is written by Walter Kaye, MD, Professor of Psychology and Director, University of California, San Diego, Eating Disorder Research and Treatment Program.  To better understand the import of what he has to say about Carrie Arnold's achievement, you can read more about him and his outstanding dedication to his work here.   He writes, 

Carrie Arnold has done an outstanding job of translating complex and difficult research findings into understandable concepts.  This book should be an essential guide for individuals with eating disorders and their families who would like to know more about how brain processes contribute to eating disorder symptoms. 

  

 The second excerpt summarizes what one learns when one reads her book:

Decoding Anorexia is the first and only book to explain anorexia nervosa from a biological point of view.  Its clear, user-friendly descriptions of the genetics and neuroscience behind the disorder are paired with first person descriptions and personal narratives of what biological differences mean to sufferers.  Author Carrie Arnold, a trained scientist, science writer, and past sufferer of anorexia, speaks with clinicians, researchers, parents, other family members, and sufferers about the factors that make one vulnerable to anorexia, the neurochemistry behind the call of starvation, and why it's so hard to leave anorexia behind.  She also addresses how environment is still important and influences behaviors, the characteristics of people at high risk for developing anorexia nervosa, why anorexics find starvation 'rewarding', and why denial is such a salient feature, and how sufferers can overcome it.  

Note for the purposes of what I'm focusing on here: "how sufferers can overcome it."

Jennie Schaefer has written two of the books that are on my shelf:  Life Without Ed: How One Woman Declared Independence from Her Eating Disorder and How You Can Too (2004) and Goodbye Ed, Hello Me: Recover from Your Eating Disorder and Fall in Love with Life (2009).  From the book jacket review, 

Ultimately her two books reveal [again, the changing the behavior theme] that being fully recovered is not just about breaking free from destructive behaviors with food and having a healthy relationship with your body; it also means finding joy and peace in your life."  

I refer to Jennie Schaefer and her groundbreaking books that have helped countless people get on the path to recovery, because Schaefer also maintains a blog and has recently written that she spent quite a bit of time talking with author Marya Hornbacher.  The culmination of that conversation is Schaefer's three fascinating posts detailing what Hornbacher has been thinking since the publication of her first book, Wasted. 

To step back for a moment, Marya Hornbacher first came to everyone’s including my and my family member's attention when she published  Wasted:  A Memoir of Anorexia and Bulimia [1998 by Harper Collins].  The paperback followed shortly after that and arrived in our hands sometime in 2005 when my family member's therapist gave the book to her to read.  It's probably the most candid book I've ever read about eating disorders and yet the book was also hugely educational and helpful to me to try to comprehend the depths of my family member's profound illness that was so much stronger than mine had ever been.    I still highly recommend the book but always provide the caveat that it's not easy reading.

Marya Hornbacher went on to write Madness: A Bipolar Life; another candid memoir that revealed her struggles with the co-moribidity that  interfered with her recovery and her life.  The book includes helpful facts, websites, and contacts regarding the diagnosis of bipolar disorder.

Now, according to the discussion she had with Schaefer, Hornbacher will be considering, among other things, "unsticking" and the importance of changing one’s behavior (one habit) and replacing it with another behavior in order to get into recovery.   Like Arnold, Hornbacher indicates in the interview that she will be spending quite a bit of time researching  material and working with people in order to write this next book.  

I look forward to the publication of her book and in the meantime I refer you to Jennie Schaefer's blog and these three links:
http://www.jennischaefer.com/blog/overcoming-adversity/wasted-full-recovery/
http://www.jennischaefer.com/blog/overcoming-adversity/take-medication-letting-go-mary-hornbacher/
http://www.jennischaefer.com/blog/overcoming-adversity/marya-strategies-unsticking-part-3-3/