Policy Statement of Support by the American Medical Association (AMA) re Eating Disorders and Treatment - Parity

Bravo to the American Medical Association for this announcement!  This adopted policy augments the work of President Obama's Task Force as well as of those working for adoption by Congress of the Mental Health Reform Act of 2016.  More information about the Task Force and the MH Reform Act here in my blog.  

June 15, 2016

AMA Urges Equal Health Care Access for Eating Disorders

For immediate release:
June 15, 2016

CHICAGO – The American Medical Association (AMA) adopted new policy today urging equal health care access and payment for eating disorders. Although current federal law mandates parity in benefit levels for eating disorders, many payers do not offer parity of services, effectively excluding eating disorders from mental health parity.

"Eating disorders have the highest mortality rate of any mental illness, but too often a patient's care is determined by their insurance company instead of their health needs," said former AMA Board Chair Barbara L. McAneny, M.D. "With only one in 10 patients with an eating disorder receiving treatment and with psychological intervention widely accepted as a critical component of care, ensuring mental health parity in benefits will save lives."

The policy builds on existing AMA policy related to eating disorders, mental health parity and body image. The AMA already encourages payment for physical and behavioral health care services on the same day and for Medicaid to pay for those services in school settings. Additionally, the AMA supports increased funding for research on diagnosis, prevention and treatment of eating disorders, including research on the effectiveness of school-based primary prevention programs for pre-adolescent children and their parents.

###

Media Contact:
AMA Media Relations
Phone: (312) 464-4430
Email: media@ama-assn.org

Global Assessment of Functioning (GAF) Scale - A Scale You Should Know About

During a recent hospitalization, the usual assessment was made of my loved one's progress.  The report included the "multiaxial" system for assessment found in the Diagnostic and Statistical Manual of Mental Disorders.  The latest version is the DSM-V - the current edition published in 2013.  Interestingly, the multiaxial system was dropped from the DSM-V.  Here is a link to the history and discussion about the DSM-V and the multiaxial system.

As part of this update to DSM-V, a new scale was developed called the World Health Organization Disability Assessment Schedule 2.0.  Here is a link to this scale.  It's not clear to me that this new scale gets at what is on a person's mind although the questions do investigate a person's ability to function.

Since the multiaxial system is still in use here and probably elsewhere, I thought it a good idea to post about it.  For those not in the profession or not familiar with the multiaxial system, this system was designed to provide what is considered by the psychiatric profession to be a comprehensive diagnosis or picture of the entire scope of factors that account, it is believed, for a patient's mental health.   

Next, I list the categories I found on the report with a simple description of each of the five. Note that these are examples only:

Axis 1 - the clinical disorders and mental illnesses including, e.g., bipolar disorder, generalized anxiety disorder, severe depression, schizophrenia, substance abuse disorders, and eating disorders such as anorexia

Axis 2 - long standing personality and developmental disorders, e.g. what is known as borderline personality disorder

Axis 3 - general medical conditions, acute medical conditions and physical disorders e.g. osteoporosis, cardiac arrhythmias, acute weight loss

Axis 4 - psychosocial and environmental factors believed to be contributing to the patient's mental health, e.g. death of a loved one or family member, acute trauma, serious illness of family member

Axis 5 - the Global Assessment of Functioning (GAF) Scale

Perhaps because Axis 5 had never been included in previous reports provided to me or the Axis category had never included any information, I'd never known about Axis 5 or what is called the GAF Scale.  The scale provides a hypothetical continuum of mental health-illness looking at psychological, social and occupational functioning, ranging from 100 (superior) to less than 10 (persistent danger of severely hurting self or others; inability to maintain minimal personal hygiene; or serious suicidal act with clear expectation of death). The assessment is usually made by at least one and hopefully two or more psychiatrists.  Here in Arizona, what is known as the Title 36 process involves the independent assessment of a person by two psychiatrists.

Here is a link to a comprehensive GAF Scale.

A score of anything at 50-41 points to serious symptoms (e.g. suicidal ideation, severe obsessional rituals, frequent shoplifting) or any serious impairment in social occupational, or school functioning (e.g. no friends, unable to keep a job).  As one descends to, say, 10 the person is in persistent danger of severely hurting self or commits a serious suicidal act with clear expectation of death.  As one climbs the scale above 50, one encounters moderate to mild to minimal symptoms and tops out at superior functioning.

The number I found on the report represented, I was told, where my loved one stood and it shocked me.  Shocked me because if her providers and insurers knew of this score, they knew she was more than seriously mentally ill.  Suicidal ideation comes into the picture at 50.   After learning about the scale and what the number meant, I felt I was armed with even more valid information to insist on hospitalization for an extended period of time.  My family member just completed 7 weeks of inpatient hospitalization and has been moved, in spite of a continuing low number on the GAF Scale, to a step-down in spite of our  and another professional's objections.  

Yet, for the first time, we and the team were able to obtain inpatient hospital treatment until our loved one's weight reached a BMI of 19.4.  The goal was higher than that but how grateful we were that the hospital staff worked hard to help see this achievement - a miracle and hopefully a precedent for others in the State of Arizona where a bill to to study the impact of required treatment for eating disorders for those with the low/no income insurance known as AHCCCS was snuffed out in committee.

I decided to write about this scale here because it seems to me that this scale and the score given to a loved one with multiple diagnoses might help a family obtain inpatient or residential treatment paid for by health insurance.  At the very least, the score might help a family get their loved one into a safe place for more than a short period of time.

Eating Disorder Recovery is a Process/ED Treatment Must Be As Well

Among all the messages coming at the public in the media this week are those focused on eating disorders, thanks to the growing initiative known as Eating Disorders Awareness Week.  Some of the messages are personal; i.e. they are stories.  Stories tend to grab attention as many of us know which is why the Eating Disorders Coalition has worked so hard to create the means for families to tell their stories to legislators on Capitol Hill.

This work extends beyond Washington, DC to individual states like Arizona where yesterday, Senator Katie Hobbs introduced a resolution to our Legislature.  Here's her resolution:

Yet stories present "just" one perspective on a disease that we know now is biologically based and that research is revealing appears for reasons that aren't quite understood.  So, to educate the public somehow these stories in the media especially this week need to be couched in a constantly updated base of information about eating disorders.  Some pieces are introduced with that kind of information; others are not.  Some continue to highlight the relationship between mother and daughter/son in ways that can be interpreted as blaming.  The media needs to get beyond this blaming message by improving the message and one of the ways the media can do that is by introducing the story with, perhaps, a few sentences that emphasize that eating disorders are, in fact, biologically based illnesses.  The how remains the question and many are working on a solution including organizations like F.E.A.S.T., NEDA, ANAD, NAMI and others as well as dedicated researchers.

Yet this is only part of the entire picture.  The other part is the necessary acceptance by all concerned -- parents, the medical establishment, insurance companies, the legislature, and the individual herself/himself who may or may not be aware of their role in getting well -- that recovery is a process and not just dependent on one stay in a residential facility or a several months-long effort on the part of a team including the family.  Many of us have learned that the potential for the reappearance of the illness may be a life long tendency. 

In addition, the recovery process depends on the Establishment's/the public's awareness that treatment of eating disorders must be carried on in the same way that treatment is provided for other biological illnesses.  So, for example, a person with diabetes or multiple sclerosis gets on-going treatment covered by insurance (one hopes and that's another topic) and monitored on an ongoing basis, as well.

This is not as simple as it looks.  Those with illnesses like diabetes can monitor their own illnesses through daily tests and periodic doctor's visits.  The treatment of eating disorders, because they aren't well understood yet, isn't as easily defined.  And often, the brains (thinking processes) of those with eating disorders are so compromised that they are unable to monitor their "state".  So, a system needs to be put in place for this illness that provides ongoing coverage by insurance so that anytime a person with this illness falters, s/he can return to more intensive treatment to get back on track without having to jump through hoops to get it.

In other words, the door to treatment for eating disorders must remain open and methods of treatment (both physical and psychological) must remain flexible to address that person's changing needs since this disease affects people of all ages.  All too often doors are slammed shut without alternatives provided.  This situation must change, especially for those whose eating disorder has been progressing for a long time.

The bottom line is that we need legislation to make sure that insurance providers and the medical establishment remain as open to the need for ongoing  treatment  of eating disorders as they are for diseases like diabetes.  In addition, we need the education/continuing education of doctors and therapists to include the latest information about treatment of eating disorders and the incorporation of this information into the required re-licensing of all.

Activism for Insurance Reform

The Eating Disorders Coalition and the National Eating Disorders Association (among others) are actively encouraging people to become involved in a national lobbying effort to reach state and national legislators who have the power to introduce legislation about Eating Disorders.

As many of us parents know, it's difficult if not impossible to obtain adequate insurance coverage for treatment of eating disorders, a process toward recovery that can take 5-7 years if addressed early enough.  If not identified/diagnosed and then treated quickly and effectively, eating disorders can and do simmer along for years, disrupting the lives of those affected.

From the NEDA Website:

"Eating disorders are serious, potentially life-threatening conditions that affect a person’s emotional and physical health. They are not just a “fad” or a “phase.” People do not just “catch” an eating disorder for a period of time.  They are real, complex, and devastating conditions that can have serious consequences for health, productivity, and relationships. 
People struggling with an eating disorder need to seek professional help.  The earlier a person with an eating disorder seeks treatment, the greater the likelihood of physical and emotional recovery."

Recently, Leah Dean of F.E.A.S.T. wrote a piece outlining how to be an effective advocate drawing upon a template developed by the AIDS Advocacy Movement.  You can find her post here. 

Just this week another post appeared in the blog of the law firm Kantor and Kantor of California, a firm that has successfully represented families whose loved ones have insurance policies but the insurance companies involved have been reluctant to provide adequate coverage.  This situation is changing!

The blog post describes the work by Annie Seal of Missouri who advocates for insurance reform and who, through very hard work, obtained support for her work from the Missouri legislature.  Here is the story of how she accomplished her goals.  The Missouri site provides a draft of a letter of support for those who wish to advocate for change within their own state.

And, with great success.  Missouri SB 145 has been passed into law!

These two women have provided a template for change.  We can make a 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......

Updates and Thoughts re Eating Disorders that have become entrenched

Recently, I've posted three comments in other places that I've decided to draw together here.  This post will be somewhat disjointed as a result and I will probably return to edit it.  In the meantime, this also serves as an update of sorts and as another thank you to a woman -- Laura Collins -- who has made an enormous difference in the world of treatment for those with eating disorders.  It occurs to me, as with other social movements, that change comes from the bottom up. People like Laura Collins of F.E.A.S.T. and others connected with the organization she has founded (many, many parents and people currently on the -- at times -- tenuous road to recovery) are gaining a strong toe-hold and getting the attention of those who need to listen, many of them psychiatrists and therapists and treatment facilities who/which aren't keeping up with developments in the understanding of the brain and behavior and the influence of environment, and should be.

The recent news out of Great Britain of a teenager who recently died because she was released from a eating disorder treatment facility by people who decided that because she was an "adult" she could move on to take care of herself motivated me to return to post here.  Those people forgot that first, her brain was poorly nourished and therefore not functioning well, and that two, her prefrontal cortext -- the seat of where decision making is made -- was not (as with most teens is not) fully matured and probably would not be until her mid-twenties or because she had starved her brain, later than that.

An update of sorts is in order, because I have not posted here for quite some time.

First, for those with adult children with an ED that has become entrenched and who has a co-morbidity for example a diagnosis of borderline personality disorder and there seems to be no light at the end of the tunnel may I suggest that you

(1) never give up hope;

(2) believe that their true self is still in there, buried under the eating disorder's take over of their mind and it is, believe me, a take over;

(3) search for any means possible to force/persuade the person into treatment at a facility where your loved one will be safe for at least six months (twelve months would be better) - not only from herself or himself but also from all the many outside influences that may take him/her off track; 

[At this point of my list, I do suggest that you read Wasted by Marya Hornbacher. She was in such a treatment facility.  Continuing to help someone with a long-term eating disorder is absolutely critical. You are dealing with, I am sure you know, a deadly illness. 

(4) with an attorney if necessary, work with the medical/psychiatric staff at the facility to implement Sarah Ravin's excellent step program and be sure to follow the treatment. The first order of business is nutrition, nutrition, nutrition to bring your adult child's brain back to functioning order. Here is a link to what I am talking about:
http://www.blog.drsarahravin.com/eating-disorders/active-ingredients/
and then read this, too, also by Dr. Sarah Ravin:
http://www.blog.drsarahravin.com/eating-disorders/navigating-phase-ii/
This schedule is geared for someone whose ED is not as entrenched but it still highlights the time that is needed to overcome the ingrained behaviors.  
 
(5) Even if nothing else but restoration of weight and stabilization of electrolytes and of your adult child's brain occurs in that twelve months or so, your loved one will have been given an opportunity to heal in ways that seem invisible but that are critical for recovery. A nourished and somewhat stable brain is the first step.

(6) If at all possible eliminate all diet soda esp that with aspartame as recent research has indicated diet soda seems to exacerbate depression.

(7) If at all possible eliminate or cut way back on anything with caffeine so that the person's sleep patterns and sleep itself are not interrupted.

(8) Again, looking at Sarah Ravin's schedule, know and understand that recovery is fragile and tenuous every step of the way for those first six months or so. Remember that a set-back is not the end of the world. 

(9) A step-down facility may be (probably will be) necessary following this treatment in a locked facility.

(10) If you can, put together a team of people who "get" eating disorders and who "get" the person they are working with. An ideal team includes:
team leader who is herself/himself an experienced therapist
case manager
therapist for the co-morbidity
therapist for trauma work (if relevant)
nutritionist/registered dietician with ED education
occupational therapist
medical doctor
psychiatrist also trained in ED
http://desertdwellergettingon.blogspot.com/2010/11/team-approach-how-to-keep-recovery.html
 
An important component of this plan, as noted in the above link, is they all must have clearances to speak with each other and with the person (parent, spouse, etc.) who knows your son or daughter.

(11) if Borderline Personality Disorder was diagnosed (or emotional dysregulation disorder), get the very best therapist you can skilled in dialectical behavioral therapy who is at once kind but also hard as nails and who doesn't hesitate to seek their own therapist to help them because BPD is very difficult but not impossible to treat.

(12) remember that recovery is a long process rather than a one or two month treatment program.  Most therapists recognize that recovery can and probably will take 5-7 years.  

Progress...... one very small step at a time. 

Always remember the saying, progress not perfection. 

Also remember, eating disorders are brain disorders - an illness of the brain. If your loved one had tuberculosis (and the entire world is mobilizing for this disease probably because people suddenly realize it's becoming a real threat again, but just the same it is an illness) or cancer or MS or Parkinson's, real medical insurance companies would cover the treatment. There must be parity when it comes to eating disorders.  Contact your national and state legislators.  Demand parity.  NAMI and NEDA are very active in this work.   Our loved ones must be given a chance to heal just as someone with any physical disease must be given a chance. If treatment takes a long time or if it is chronic, then it must be covered and paid for.  It must be.

To close, I woke up this morning and remembered something one of my family member's therapists told me a few years ago having to do with ED treatment:

There was a time, in California, when there was a program connected with a major university, the organizers of which believed a year of treatment was necessary for someone to overcome an eating disorder (as a first step). The program was funded by a government grant, as I recall.

So little. So soon. Too soon for the rest of the psychiatric world to learn about and identify with before the program was discontinued, unfortunately. 

It's time to turn all of that around and return to the concept of long-term treatment, either in the home with paid leave covered by insurance to do this using formats such as that developed by therapist Dr. Sarah Ravin or in a formal treatment center that remains humanely connected with the family and that uses a very long term step-down program geared to the healing of the patient and not to some prescribed "everyone does it this way" kind of treatment.

I really do not know - I am not prescient - what the outcome will be for my family member but I do believe that it's important to share here what is being attempted on this person's behalf because little attention is being paid to those adults with entrenched ED's who could not benefit back then from what is known and is beginning to be practiced now.  

The dilemma of long term illness

I've put down my "pen" for awhile.  I took a long break for myself secure in the knowledge that a team of very dedicated people was figuring out how to move forward on literally a day-to-day basis and that I not only needed to emotionally disengage but also needed to trust the process.

Earlier this year I did pull together a few articles and news items about entrenched eating disorders.  Eating Disorders can be long term battles.

After this hiatus that included a wonderful change of scenery, I returned to reading (I had thought I would just lurk) posts in a variety of places and came across a discussion about "walking away."

I believe "walking away" is different from "emotionally disengaging" - at least the semantics to me indicate a difference.  And, I have chosen never to do this in the more than 24 years that ED has been present in the life of my loved one.

Here's a piece (somewhat modified) that I recently wrote to address why I will not walk away.  The quote at the beginning of my post below is thoughtful and important.   However, there's more to the picture and here's my take.

Quote:

As it has been said many times, sometimes it's only when those individuals finally get tired of what their lives have become that change occurs.

I fully agree with this statement.

However, in some cases the likelihood of death occurring before this status is reached can be very high.  I know this.  I have witnessed this.  Scarily close.

If insurance companies are starting to redflag people who "fail" treatment [apparently this is happening], I would ask whose failure is it really? It's not just that of the person whose brain is altered by starvation and purging or binging.

I firmly support the idea that re-nourishment and re-establishment of positive behaviors takes more than 3 months and I become furious when I hear that an insurance company has stopped payment for treatment of this insidious set of diseases.  I would advocate for a year! and early on there was a program, I believe in California, that did offer a year.  But this was many years ago and funding dried up.  As I've written here before, not all families have the wherewithall to put Maudsley into practice in their home.  In addition, sometimes family based therapy in combination with re-feeding at home just doesn't work.
 
It's a very rare insurance company that provides treatment for longer than three months. And the thing is, more time is absolutely necessary to break the bonds that ED has formed with the brain of the person with the disease/brain circuit disorder.

The second problem that can develop is, for example, as a person with Borderline Personality Disorder as a co-diagnosis (and even this is a hurdle because many doctors, therapists and therefore insurance companies do not yet accept/recognize BPD as a brain circuit disorder; rather they identify BPD as a personality disorder) who starts to get a handle on what is going on, it's as though a red cape is unfurled in front of some of them instigating behaviors that completely disrupt their ability to continue in an environment labeled "willing to be here." Private facilities require that an adult client be "willing to be here."

I have witnessed this so many times. I can personally recount the experience of my loved one making the firm decision to get well and taking the responsibility of getting into a facility her responsibility. For one month I drove her at her request to obtain physicals and labs and doctor's visits and therapy, etc., etc., etc. to obtain all the documentation she needed to be admitted to a facility. She did the work; I provided the transportation. All was set. She was accepted. She struggled in the beginning to eat as do most who have an ED. She gained weight. She gained strength and then bingo! her BPD/ED combo took charge and she was asked to leave even though the part of her who knew she needed to stay begged to stay while the other part totally interfered. I know this happened.  Nadia Shivak in her book Inside Out: A Portrait of an Eating Disorder illustrated this very simply in words and drawn pictures.   [The reference is in my list of books on my blog.]

I wish private residential facilities would change their policy of not continuing to work with a client who isn't willing.  I believe this hurdle must change even if it's against the person's will because that will is still dominated by disordered and distorted thinking (refer here to the Keyes Starvation Study) for several months.

I don't think this hurdle is only for those with BPD, either. An addiction is a terrible brain chemical change that undermines a person, whatever that addiction is. It takes a change of heart and mind to be willing to get on the road to recovery and to avoid whatever it is that's addictive.

How? I think this is the question of the hour. When it comes to food -- which is life, along with water here in the desert -- this particular addiction (which I believe an eating disorder becomes) is deadly in a different sense. Alcohol isn't a source of life; neither is, for example, heroin or crack or percocet. There is a difference.  

Researchers and doctors and insurance companies and parents and loved ones must come to recognize this fact.

One extraordinary team has come to this conclusion and is doing all it can to create an environment to bring about this change of mind in the sense of ingrained behavioral patterns. The will to live has never left the person I am talking about but the disease and the addiction it created interfered big time and the claws of that disease and addiction go very deep.   I believe this change can happen.

May I respectfully say that "walking away" isn't the way I would word what must be done for people with eating disorders whose disease is entrenched. Having stood by as an ally for 24 years, I firmly believe this. As a survivor of anorexia/bulimia, I firmly believe this. I didn't have the additional brain circuit disorder component nor, thank God, was I cursed with an addictive brain so strong as to turn to other behaviors that further interfered with my choosing (yes, finally choosing) to get well. Others aren't that lucky.

Is Food Medicine?

I've often been told and then tell my daughter that "food is medicine."

Is food medicine?

Would it be possible to persuade the Powers That Be that for someone with an eating disorder, FOOD IS MEDICINE?

And, if that is true, then would that mean a medical doctor could prescribe food?

And, if a medical doctor could write a prescription for food, would this prescription be permissible for someone on government benefits (SSDI or SSI) - to go beyond the SSI allocation re the portion for food or to replace food stamps (which are permissible) with delivered food, ready to eat?

And, if permissible, could an adult with an eating disorder obtain a prescription for a local Meals on Wheels or some kind of  daily (so one would not binge on the delivery of e.g. a week's worth of food) food delivery service that provided the calories needed for recovery?

Could this food that is prescribed and delivered be tax deductible as a medical expense?

Could this be a possible solution for someone who needs this kind of service to get on the road to recovery?

So many people with eating disorders literally panic when going into a grocery store let alone buying groceries, bringing them home, putting them in the pantry, and then selecting items to prepare food.

What a great solution this might be as a first step solo!

What do you think?

The Parent, Family and Friends Network - Insurance Information article by Susan Maccia

The Parent, Family and Friends Network of the National Eating Disorders Association publishes a quarterly newsletter.   One of the issues (fall 2011) includes several important articles (as usual) including a piece by outgoing PFN chair, Susan Maccia, on Single Case Agreements.  The article identifies an SCA as:

If the services to meet an identified clinical need are not available within the contracted network, necessary services are provided in a timely manner through an out-of-network provider.  A Single Case Agreement is a contractual agreement developed for an enrolled person (insured) based on that person's behavioral health needs and for a predetermined period of time.

Among the articles in this issue: a NEDA Conference recap (2011), Males and Eating Disorders, the NEDA Navigators, the existence of a NEDA Loss Support Network, an announcement of planned free webinars, and one about athletes and eating disorders.

To find out more about the PFN Network, click here

Avoiding Fragmented Treatment for the Adult with an Eating Disorder

[Revised 3 28 2019]
Walter Isaacson's biography, Steve Jobs, captivated me.  

Isaacson created a superb volume that not only captured Steve Jobs' life, but also captured the last few decades during which technology took an enormous leap forward as well as the management/operational philosophy that kept Apple in the lead. 

So where's the connection with eating disorders?

The philosophy he espoused at Apple has not yet been fully embraced by the health care field, an area that must adopt such a philosophy on behalf of its patients whether they have pancreatic cancer or an eating disorder. 

Steve Jobs noted at the end of his life, that ".... he was facing the type of problem that he never permitted at Apple.  His treatment was fragmented rather than integrated.  Each of his myriad maladies was being treated by different specialists -- oncologists, pain specialists, nutritionists, hepatologists, and hematologists -- but they were not being coordinated in a cohesive approach.... [emphasis mine].

In addition, Isaacson writes, Jobs' wife, Laurene Powell stated, "One of the big issues in the health care industry is the lack of caseworkers or advocates that are the quarterback of each team."

In Jobs' case, this meant that "....nobody seemed to be in charge of figuring out how nutrition was related to pain care and to oncology."  [Steve Jobs by Walter Isaacson, Simon and Schuster, 2011, excerpts from pages 549-550.]

As the mother of an adult who has been in and out of treatment centers and on the "outside" working with a variety of psychiatrists, psychologists, nutritionists, medical doctors, other health care workers, and therapists for more than 30 [2019] years, I have seen the exact same thing happen in her world as Jobs' described in his. 

My loved one came close to getting the perfect kind of care she absolutely needed while in residential facilities, especially the two most recent times, when all of this and food as well as a bed was put together at the tune of what normally is charged -- anywhere between $1,000 and $2,500 a day.  Since even looking at those figures can be frightening, it is especially so for those who lack health insurance or whose insurance company does not provide coverage for eating disorders which are biologically based disorders.  The brain is a physical part of the body, is it not?

More recently my loved one, because of her diagnosis here in Arizona, received a two-tiered approach -- the behavioral health team took care of everything above her neck that was inside her skull (even the meds prescribed that clearly had an effect on her entire physiological being); and the medical piece (everything below the neck or not involved with the brain) was the  responsibility of a medical doctor and secondarily of a nutritionist.  

The caseworker's responsibility did not at first  carry over to the medical piece.  This oversight somewhat changed further along in a critical period, an enormous credit to her behavioral health care organization here in Tucson.  However, there was and still is no provision of food/appropriate nutrition and its preparation and delivery by any kind of insurance covered treatment for eating disorders outside of the hospital or residential facility in this dynamic.

So the question is for her and for many, what does an adult do after leaving a residential facility to maintain his/her eating patterns?  What might make this easier?

Food is medicine for those with eating disorders as I've noted and explained elsewhere on this blog.  This concept is the backbone of the people of F.E.A.S.T.  many of whom feed their younger loved ones at home.  As I have written elsewhere, often adults will reject this approach of living at home under the watch of a parent.  Without food, the body will die.  Without biochemical balance, the body will eventually or suddenly die.

Several other things happen to the body when it is malnourished or mistreated, too, that also can lead to death.

Because insurance companies pay attention to the bottom line, they rarely grant more than 30-60 days of residential treatment for someone whose eating disorder has taken over their life.  Believe me, an eating disorder is a deadly disease that can require months of therapy, re-nourishment and monitored eating (depending on the diagnosis that can range from anorexia to bulimia to ed-nos to binge eating disorder and probably several other varieties that do not yet have a name) and then possibly years of staying vigilant against the threat of its return depending on their incorporation of some form of cognitive therapy.  An eating disorder indeed  takes over their life.  Their behavior patterns are altered; their brain chemistry changes.  Eating disorders are the deadliest of all brain disorders/mental illnesses.

A caseworker working with the individual (e.g. an independent adult) or the family (adult living at home or a person under 18) would certainly help to keep everyone on board and communicating with each other about the care of the person with an eating disorder.  Often this falls to the mother, or the family, or a concerned advocate who is at the same time often responsible for making a living full time on behalf of the family/individual.  This is difficult at best and impossible for some to handle.  

A neutral person, highly skilled in the field of eating disorders and paid for by insurance, might be a better answer.  For example, a caseworker might be a psychiatric social worker with experience and training in the field of eating disorders.

How can we as a society make certain that until scientists figure out the "why" and develop a "cure", if such a thing is possible (and I believe genetically it is), we must create a seamless method of treatment and care for each and every person who develops an eating disorder and ensure that a caseworker as well as food/proper nutrition and its preparation and delivery are part of that prescribed treatment, whether the person is in the hospital, a residential facility, and out-patient facility or at home. 

For the most part, each person who has been diagnosed with an eating disorder, shows incredible promise to our world.  They tend to be intelligent, driven, and perfectionistic often obsessed with details as well as able to see the entire picture when their brains are working correctly and they are well-nourished.  Economically speaking, they represent the next generation of people who will invent; create; lead; write music, poetry, novels; create beautiful works of art; discover cures; raise talented children....... and take our country forward.  It is estimated that at least 10 million people in our country have eating disorders and need help.

Surely our legislators and our government can work together to make sure that those with eating disorders  receive care that is not fragmented as they work to get on and stay on the path to recovery.

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.

Body, Mind, Spirit

Some years ago (actually in the 1970's)  the "Six Million Dollar Man" was a popular television show.  The series gave rise to "The Bionic Woman."  For those readers who weren't born yet, these series featured people who had what have now become more commonplace - artificial parts to replace or shore up our failing human biological components.  Nowadays, one can get implants or transplants for just about every part of the human body; an exaggeration, I know, but so often now we read of a new miracle of surgery and science.

My mother, had she lived a few more years, might soon have been able to see clearly again.  She lost her eyesight to the dry kind of macular degeneration and with the loss of her sight went her independence.  She soldiered on, as she put it, for a few years - until she turned 89 -  before she died after not surviving hip transplant surgery.  An artificial eye is on the horizon.  What a miracle that will be.

Any one of us now, given availability and more importantly insurance or a fortune or means to repay a loan, can get a tooth implant, a heart transplant, a liver transplant, and a new knee or hip, for example.  

One's teeth are covered by dental insurance, one's body is covered by medical insurance, in fact one's brain is covered by medical insurance, but the coverage of one's mind is at the whim of insurance companies or the government laws/legislatures.

Think about it.   Aren't your teeth part of your body?   I overheard someone speaking to my dentist this morning and he remarked he needed to return to his periodontist to be treated again at $20/minute.  One single tooth implant can cost upwards of $10,000 out of pocket  while a much larger and more complicated hip implant can cost you a relatively small copay if you have medical insurance.  If you suffer a stroke and are without insurance, you still can go to the hospital and get treatment that inevitably will be covered by some kind of insurance or absorbed by the hospital's financial machine (to its detriment).

But if you have a mental illness such as bipolar disorder or an eating disorder, good luck getting enough coverage or any treatment even if you have insurance with a mental health component so you don't have to go home prematurely (meaning before enough treatment is provided to reverse the effects of the disease) to die as someone I am somewhat electronically acquainted with put it recently.  

Aren't all of these organs from which these illnesses develop part of the human body?  Does it seem ridiculous to you as it does to me that there's no integrated insurance coverage to address all the ills of our bodies?  

Having studied anatomy and physiology in college, I became in awe of the interconnections of all parts of my body.  We spring from this tiny egg that is fertilized by a little sperm and eventually are born into this world with everything working correctly, if all goes well.  Beyond birth, our bodies are subjected to the vagaries of existence on this earth ranging from diet to shelter to opportunities.  

Yet when it comes to medicine, our bodies are splintered into parts that are addressed separately by members of the medical profession without regard to the fact that an abscess of a tooth can lead to death of the body, that dehydration and electrolyte imbalance can lead to death of the body, that a heart attack can lead to death of the body, that an infection from bacteria introduced to an opening in the skin when getting a transplant or implant or even a cut can lead to death of the body, that a imbalance of substances in the brain can lead to depression that can lead to suicide/the death of the body.

Read the above again.  Every single one of the things I've listed can and does happen to those with eating disorders.  Every single thing.  And yet our government of the people, by the people and for the people does not provide adequately for those who have a mental illness, even those who have insurance!!!!

And spirit?  What about spirit?  Wikipedia provides a rather broad definition of this term.  About three years ago I participated in a Family Week during which our group leader remarked that we are all spirits, if you think about it.  Our bodies are made up of molecules that are made up of particles that are in constant motion.  The body electric.  What happens over time to someone whose spirit is not nurtured, whose very being is maltreated or ignored.  Death.

Isn't it time to take a harder, more accepting look at  holistic medicine?

I think so.  I am angry that I need to go after these different facets to address and advocate for the well being of my loved one.  That one "side" won't work with the other "side" even though the basic team that meets includes all sides.  There's something wrong with our system.