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.

Big Data and No Health Without Mental Health - Reflections on Dr. Insel's blog

Big data and the consequent availability of health information about people in Sweden illustrates what could happen in our country -- and is happening, actually, in some areas such as Multiple Sclerosis and Autism -- if more information was available in real time.

Dr. Thomas Insel, director of the National Institutes of Mental Health, blogs frequently on a variety of subjects.  We are fortunate that he takes the time to do so to summarize the advances that have been made.  We are also fortunate that President Obama drew world-wide attention to the recently revealed NIH initiative to revolutionize our understanding of the human brain.

Although his title focuses on Schizophrenia, Dr. Insel closes this essay with the observation, "These new numbers from Sweden should remind us that serious mental illness is a health disparity issue. One way to think about losing 13 – 15 years of life expectancy is to realize that people with serious mental illness have not benefitted fully from the gains in longevity over the past half century. We frequently say “no health without mental health” to stress the importance of treating mental illness as a pathway to better health outcomes in society. For those with schizophrenia, even in the most advanced health care system in the world, we are still facing early mortality from lack of diagnosis and treatment of medical illnesses."

If all goes according to plan, I shortly will be speaking succinctly on what the lack of parity and the presence of myths  did to interfere with appropriate care for my beloved family member who has been battling an eating disorder for more than 25 years.  Thanks to the work of the NIMH, the Academy for Eating Disorders, the Eating Disorders Coalition, and F.E.A.S.T. among others, advances are being made to get information into the hands of those who can make a difference so that someone diagnosed with an eating disorder can get the best possible treatment quickly.

A big hurdle is persuading everyone to stay current.  Membership in these three organizations alone combined with following advances noted by NIMH, which includes reading, comprehending and utilizing the information provided, would make a huge difference.

The Four (or more?) Kingdoms of ED

Dr. Thomas Insel of the NIMH recently wrote this thoughtful piece about "The Four Kingdoms of Autism."

Over time I have become aware that there are similar kingdoms within the communities of Eating Disorders.  Within the last six months I've noticed programs for upcoming conferences the titles of presentations of which seem to be out of date and I question the insurance industry's insistence about paying for only a short period of in-patient treatment.  [I think each person is unique and should not be lumped into a category of x number of days of treatment for anorexia or bulimia etc.] 

I recall the NEDA conference I attended in New York in which the opening speaker, Dr. Russell Marx stated, ""The current advocacy efforts in the United States occur in an almost complete vacuum of data about the health services utilization of individuals who experience an eating disorder."

I'd love to see a similar thoughtful piece about the Kingdoms of Eating Disorders......

Consensus Science - an upcoming conference

During the FEAST conference there was some discussion of the need to develop consensus around points and procedures about eating disorders. 


There will be a conference on this topic - Consensus Science - in Silver Spring, Maryland at the end of this month.  Here's a link to the announcement.  Here's introductory information about the conference.  Technical, I know, but for those doing research, this is an important related topic.

Collaborations between industry, regulatory agencies, and academia are generating consensus on the value of innovative tools for drug development (data standards, open databases, biomarkers, patient-reported outcome measures, quantitative disease progression models, clinical imaging, and others). These tools will accelerate the development of efficacious medicines with optimal risk profiles.
This cross-sector conference will feature state-of-the-art drug development tools while reviewing the lessons learned from Public Private Partnerships (PPPs) and scanning the landscape for the most pressing needs in drug and diagnostic development.

 

Who Gets Treatment, Who Does Not; Why Not - the Role of Data and Standards

I attended the NEDA conference a year ago. One of the statements I walked away with was

"The current advocacy efforts in the United States occur in an almost complete vacuum of data about the health services utilization of individuals who experience an eating disorder."

-- a quote provided by Dr. Russell Marx during his presentation and attributed to a document by Streigel-Moore.

I am bringing this up because there does need to be not only more data about the health services utilization of individuals who experience an eating disorder, there also needs to be some sort of standardization of this and other ED data so researchers, insurance companies, doctors, therapists, nutritionists and psychiatrists can look at studies and know that the information presented there is in the same "language" as in other studies.
I also believe that the Eating Disorder Community of parents, therapists, psychiatrists, organizations/associations, and those with ED's need to advocate for data collection about the prevalence of ED's, the outcomes of various forms of treatment for ED's, and lists of those therapists, medical doctors, and psychiatrists who are CURRENT re treatment of ED's.

A simple example would be the hidden difference (unless numbers of participants are revealed within the press release) between information noting there was a 50 percent success rate in a study when there were 20 people involved (meaning 10 successes, 10 not so) and when there is a study with similar results with, say, 4000 people.

Just this past week there was a series of articles in the New York Times about parity, insurance coverage for eating disorders, and comments about the need for residential treatment of eating disorders (among other topics). A longer commentary with links to the series of articles in the New York Times was provided by Dr. Julie O'Toole on this series.

Over the more than twenty years that my loved one has fought anorexia with bulimia subtype (I guess that's the best way to categorize the ED she has), the key factor -- an incredibly important factor -- has been getting her back from the brink of starvation and away from the symptoms that go along with starvation so that she could benefit from the use of therapy (cognitive behavioral, psychoanalytical, and dialectical behavioral therapy).

Here's a description of the symptoms of starvation (excerpt from Wikipedia, italics mine):

"Individuals experiencing starvation lose substantial fat and muscle mass as the body breaks down these tissues for energy. Catabolysis is the process of a body breaking down its own muscles and other tissues in order to keep vital systems such as the Nervous system and heart muscle functioning. Vitamin deficiency is a common result of starvation, often leading to anemia, beriberi, pellagra, and Scurvy. These diseases collectively can also cause diarrhea, skin rashes, edema,and heart failure. Individuals are often irritable and lethargic as a result.

Early symptoms include impulsivity, irritability, hyperactivity and possibly submissiveness. Atrophy(wasting away) of the stomach weakens the perception of hunger, since the perception is controlled by the percentage of the stomach that is empty. Victims of starvation are often too weak to sense thirst, and therefore become dehydrated.

All movements become painful due to muscle atrophy and dry, cracked skin that is caused by severe dehydration. With a weakened body, diseases are commonplace. Fungi, for example, often grow under the esophagus, making swallowing unbearably painful.

The energy deficiency inherent in starvation causes fatigue and renders the victim more apathetic over time. As the starving person becomes too weak to move or even eat, their interaction with the surrounding world diminishes."

Is there any wonder that the perceived (by others who make decisions about treatment) will to live has diminished?

I am an avid supporter of those who emphasize that re-nourishment is the first step back to health.

I know there are people (I was one of them) who can finally get sick and tired of being sick and tired and decide to change their behavior. I also know that at least two of my own blood relatives with eating disorders have not been able to do that (yet). In fact, one is slowly making progress,too! So my experience absolutely should not color whether or not my relatives obtain additional treatment. Yet, people will point to my experience and that of others who succeed and wonder. What "trait" did I get that they did not? Research needs to focus on this. And, very importantly, at least in my case I needed years of ongoing off and on therapy to help me develop a mind-set leading to success even though the ED behaviors no longer overtook me.

Recovery isn't a snap one's fingers or wave the magic wand moment.

So, how is re-nourishment accomplished when a person fights this process of eating but who at the same time is willing to undergo treatment because they want to get well; i.e. they do not want to die? What about those who are so overtaken by the disease that they have lost that core sense of fighting for their precious life? In what kind of environment can this be accomplished if environmental factors outside of a residential treatment setting interfere with the person's ability to "stay with the program" long enough to get re-nourished and "reframed" so to speak? These are important questions on behalf of people for whom the first or even the third in-treatment setting doesn't work.

If a person with cancer wants to live and can obtain hundreds of thousands of dollars worth of treatment in the form of surgery, radiation, and on-going chemotherapy, why is this not also uniformly available to those with an eating disorder, for example anorexia, who have a policy with the same insurance company? to those eligible for Medicaid and Medicare when somewhere in the system there are precedents for care for ED?

Could reliable data, collected using uniform standards assist in obtaining this kind of information in order to justify ongoing treatment? in persuading insurance company policy makers and state and national legislators all the way to the US Supreme Court that such treatment is necessary? This has worked in some States but not in others. More needs to be done.

I am asking these question because there are people in two organizations that I'm aware of right now who are working diligently to develop and apply agreed upon standards to other diseases and who have caught the attention of the FDA.

One is The Critical Path Institute and the other is CDISC.

Here is a recent press release about their collaboration regarding the treatment of Alzheimer's, also a disease of the brain.

Tucson, Arizona, October 17, 2011– Critical Path Institute (C-Path) and Clinical Data Interchange Standards Consortium (CDISC) today announced the release of version 1.0 of the Alzheimer’s disease (AD) Therapeutic Area Standard (SDTM AD/Mild Cognitive Impairment User Guide). This was developed for the clinical research community to facilitate analysis and learning from clinical studies for treatment or prevention of AD.

The User Guide outlines a standardized set of data elements so that pharmaceutical companies and other medical researchers can more easily, and consistently, collect data that can be reliably pooled and compared.

Lynn Hudson, PhD, C-Path’s Chief Scientific Officer and Executive Director of C-Path’s Coalition Against Major Diseases (CAMD) noted, “Ultimately, this will result in increased efficiencies so that the U.S. Food and Drug Administration (FDA) and other regulatory agencies can more quickly and accurately review new applications for AD therapies, making it possible for medicines to reach patients more quickly and with greater assurances of safety and effectiveness.”

This is an early and landmark outcome from a joint C-Path/CDISC project to formalize and publish the CDISC AD standard based on the elements used in CAMD’s groundbreaking AD data repository. Collaborators in CAMD, which include global stakeholders from C-Path, CDISC, the AD clinical community, the pharmaceutical industry, government agencies, academia, and patient advocacy associations, reached consensus on the relevant pooled data domains, terminology, and definitions.

Early last year, seven of CAMD’s member organizations agreed to share their data from eleven recent AD clinical research studies and allowed it to be standardized, pooled, and made available to qualified researchers around the world. They invested significant in-kind resources to remap the retrospective data to the new format that is now the CDISC standard. Those organizations included Abbott Laboratories, Alzheimer’s Disease Cooperative Study, AstraZeneca Pharmaceuticals LP, GlaxoSmithKline, Johnson Johnson, Pfizer, and sanofi-aventis. C-Path worked with another collaborator, Ephibian, a Tucson, Arizona-based company that specializes in software development, databases, web solutions and information security, to build a secure online data repository.

Today, the database contains data from over 4,100 AD subjects mapped to the CDISC standard. Its level of detail and scope will enable researchers to more accurately project the course of mild cognitive impairment (MCI) as it progresses to AD, thereby enabling the design of more efficient clinical trials that have the maximum chance of demonstrating whether a new treatment is truly safe and effective.

CAMD members and scientists around the world use the database to develop mathematical models to better track the course of MCI and AD in patients generally, as well as in genetically-defined subsets.

Roughly 5.3 million people in the U.S. alone are afflicted with AD, with costs reaching as much as $175 billion annually Worldwide, it afflicts 30 million people, a number that is expected to quadruple by 2050. Halting or slowing the progression of this disease will prevent untold suffering and save tens of billions of dollars every year. “Pooling clinical data is a powerful way to gain new insights and leverage the efforts of companies that are developing new therapies,” said Raymond Woosley, MD, PhD, President and CEO of C-Path. “Scientists around the world can now use the combined, standardized data from clinical trials to better understand the true course of Alzheimer’s disease in patients.”

According to Rebecca Kush, PhD, President and CEO of CDISC, “Standards are essential to ensure that data can be aggregated for high quality research and robust analyses. Their value to companies and scientists increases substantially when they are used at the earliest stages of planning for a clinical trial, in the preparation of the protocol and the case report forms (including eCRFs). Adoption of core CDISC standards and the complementary new AD supplement, will enable far more rapid launch of clinical research studies of AD, and will also minimize or eliminate costly back-end data remapping (legacy data conversion). We are delighted to work with C-Path on this project and look forward to similar initiatives for additional therapeutic areas.”

Bron Kisler, Vice President of Strategic Initiatives of CDISC, pointed out that data standards will promote efficiencies in making progress against this disease. “If one trial cannot be reliably compared to another, we lose valuable information and often repeat costly mistakes. It would be like trying to accurately compare distances when they are variably represented and recorded in miles, kilometers, leagues, yards, and light years. If we are ever going to stave off Alzheimer’s disease, we need to be able to clearly study and learn from every piece of data.”

The mission of C-Path is:

To improve health and save lives by accelerating the development of safe, effective medicines.

The mission of CDISC is:

To develop and support global, platform-independent data standards that enable information system interoperability to improve medical research and related areas of healthcare.

The Core Principles of CDISC are:

Lead the development of standards that improve efficiency while supporting the scientific nature of clinical research.

Recognize the ultimate goal of creating regulatory submissions that allow for flexibility in scientific content and are easily interpreted, understood, and navigated by regulatory reviewers.

Acknowledge that the data content, structure and quality of the standard data models are of paramount importance, independent of implementation strategy and platform.

Maintain a global, multidisciplinary, cross-functional composition for CDISC and its working groups.

Work with other professional groups to encourage that there is maximum sharing of information and minimum duplication of efforts.

Provide educational programs on CDISC standards, models, values and benefits.

Accomplish the CDISC goals and mission without promoting any individual vendor or organization.

This may all seem rather dry. I am highlighting this information about these two organizations because I believe similar collaborations as well as data standards will help organizations such as NEDA and NAMI and FEAST as well as researchers in the area of ED arrive at mutually understandable conclusions about what is needed to help those with eating disorders get on the path to recovery.

There are too many lives at stake here. My loved one's is one of them.

As a postscript - I  learned while looking up Dialectical Behavioral Therapy today (November 6, 2011) for the guest post by Dr. Marilyn Heins on brain development/choices that a group is actively working to put together a list of therapists who provide this very important treatment.  Their qualifications need to be part of the database, IMHO.  I am raising this point because again here I believe that the Eating Disorder Community of parents, therapists, psychiatrists, organizations/associations, and those with ED's need to advocate for data collection about the prevalence of ED's, the outcomes of various forms of treatment for ED's, and lists of those therapists, medical doctors, and psychiatrists who are CURRENT re treatment of ED's.