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......

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.

Courage, Hope and Support Groups

Occasionally I provide posts here written by Marjie Ruth who hosts a support group for parents of loved ones with ED in Tampa, Florida.  I've left that section of the post here in case anyone living in the area needs a support group.  I know when my loved one was diagnosed and for several years afterwards I did not know where to turn for support.  Tucson has a great support group now and I can put anyone who reads this who lives in this area in touch with the leader.


When my loved one's illness returned with a vengeance, I called a friend who is also a therapist in hopes of learning of someone who might be able to work with my loved one.   My friend offered some words of wisdom, given my loved one's physical state at that point, which were "Hope for the best, prepare for the worst."

I have spent the past 9 years doing just that while taking care of myself in a number of ways as well as continuing to search and uncover opportunities for my loved one to, if they are willing, pursue treatment(s) that will lead to recovery.

I realize that the phrase "if they are willing" will irk some readers who don't believe it's wise to wait until willingness happens - and I agree when someone is first diagnosed with an ED -- so I want to note here for a newcomer to my blog that my frame of reference involves more than eleven years of treatment in a variety of settings as well as in the past year a return to a brain nourished state.  At some point the willingness of an adult with an ED to work with experienced therapists and other team members becomes part of the equation, especially when -- I've provided a link to information from the National Alliance on Mental Illness (NAMI) -- insight (as opposed to anosognosia) is apparent.  I pray daily that the willingness will kick in.  My loved one has a will of iron; would that my loved one would resolve to get on the road to recovery!!!!

Continuing to hope, I know, takes a lot of courage.  Much of what Marjie writes in the following post I'm sure is recognizable to so many of us who have a loved one with an eating disorder.  As research by people like Dr. Walter Kaye continues, as information about co-diagnoses and their influence on eating disorders becomes known, and as work by family members and others to offer a shoulder to lean on (and so much more) increases - F.E.A.S.T., Maudsley Parents, NEDA, etc., - there remains a great deal of hope........

Courage is what it takes to stand up and speak; 

courage is also what it takes to sit down and listen. 

~Winston Churchill

Dear Family & Friends of the Eating Disordered;

The support group will be meeting again this week at 7:00pm on Wednesday evening (8/7) at the Hyde Park Counseling Center in Tampa. We've been having some great discussions, and this week we'll begin taking a closer look at a book called "The Happiness Trap" by Russ Harris. I'm looking forward to seeing any & all who can make it, and please be assured that all are welcome. The ABA 12-step meeting will also be happening upstairs. Please shoot me a quick email if you think you will make it to the meeting.

From the subject line and from the opening quote, it might appear that I'm adding yet another word beginning with "C". Courage is most certainly one that we could add to the list. I think finding the courage to persevere, overcome denial, and confront the necessity of change within ourselves is a huge part of coping with a loved one's serious addiction. On a day to day basis, it sometimes seems to require almost Herculean strength just to get out of bed to face another day of doubt and despair, frustration and fear, anger and anxiety. Living with someone who is deep within the grip of an eating disorder (or any addiction) is surely akin to experiencing a bit of hell here on earth. Those of us going through it can not really describe it or explain what it's like to others...not only is it painful and embarrassing to detail, but it also seems to defy any adequate verbal expression. Yeah, guess you just have to be there--but I certainly wouldn't wish that on anybody. 

As we share in group there are always nods of agreement as someone describes what would seem to any "outsider" as a patently insane scenario, but for those in the room it's pretty much universally understood. I guess to some degree misery does love company because there are times that we laugh as we realize that we don't have to explain or justify to others in attendance because they've visited the very same depths of the disease. It's a laugh of some relief at the fact that we don't have to defend with this group. It's an expression of true empathy that comes from mutually shared experience made even more significant by the suffering at its core. Often when I speak with someone for the first time, whether in group or over the phone, they're amazed that I know so clearly what they're talking about and surprised when I can share descriptions that are completely in line with their own. After groping alone and in the dark with the horror of this disease, there is some comfort in finding others who understand and have seen first hand what they and their loved ones have lived through and to talk about it.

And that's probably the main reason we cling to one another: we seek hope and crave reassurance. So while courage is an important attribute, we are focused on that which may give us courage...hope is the ingredient that helps us to cope. Having hope means more than just wishing that things would get better. Hope requires some basis upon which to have an expectation of things to come. We might search for that basis in the form of a medicine, a treatment center, or a therapist for instance. We scour the internet, ask medical professionals, and pray for answers. When we read or hear of someone's recovery, we want to know the key factors and how we can make use of them. We find some hope in another's recovery even while dealing with the fear at the edge of our mind that wonders if it will happen for us.

Perhaps our time of greatest hope is when our loved one goes in for residential treatment (hey--with 24/7 therapeutic care and a price tag that makes one cringe, haven't we paid for a bucket load of hope?). Going in for treatment is a very big step, and with it comes expectations for some real recovery. Come on, let's be real here. Our hope is that serious treatment will result in a very real cure. OK, if you're well versed in your "C" words, you know that we don't think in terms of a cure, so we'll settle for some serious progress. But how can we help but expect some big bang for all those bucks??

Look back over the last two paragraphs, and you'll notice the 3 italicized words. Ring any bells for you?? One of the premises that I've talked about previously is that expectations are the building blocks of future resentments. Those is ED therapy talk about the expectations of others by using terms like "trigger", "burden", "stumbling block", and "wall". One of the common personality traits of the eating disordered is that of being a people pleaser and a perfectionist. Our expectations (including those we've expressed &/or implied as well as those they may assume and imagine) have a huge impact on our loved ones, usually more than we realize as their impaired coping skills may blow them out of proportion. Thus it behooves us to  be aware of the expectations we do harbor and to be willing to examine their source and question their validity. While we may hope for progress towards recovery, are we expecting an unrealistic amount of change? Is the hope that therapy will help develop better emotional coping mechanisms while the expectation is that the eating disorder will be gone when residential program concludes? Is the hope that he or she will learn to make healthier decisions, and the expectation is that all those decisions will be the same ones that we would make??? And what will our reactions/responses be when those expectations aren't met? More importantly, how will such expectations affect our loved ones?

So, where does this leave us as far as our having hope is concerned? Hopefully, it will help us to think more deeply about just what it is that we are hoping for. A young girl may hope to be a princess when she grows up. We smile at the notion even as we hold her in our arms and twirl her about the room. There is no worry as we enjoy the childhood innocence, confident that in due time her maturity will bring her hopes in line with reality. Shouldn't we ask the same of ourselves--that our hopes be mature & in line with reality--and especially so knowing that our hopes do affect our expectations which in turn have an impact on those we love?

Eating disorders are horrible addictive diseases that ravage bodies and even claim lives. Yes, that is an awful truth. But an equally important truth is that there are many people who have managed to progress well into recovery and are leading very productive, fulfilling, and happy lives. I personally know individuals who have managed to crawl back from the depths of very serious ED's and are now enjoying healthy adulthood with successful careers, happy marriages, and even as parents of their own children. Recovery is possible. Recovery does happen.

You've heard the expression: Be careful what you ask for, you may get it. For us it is more a matter of learning what to hope for. Do I hope that my daughter will get to the point that her decisions are always ones that I approve of--or--should I consider hoping that she will grow to a place where she will have the confidence to be honest with herself and others and be able to think more clearly about the decisions she makes so that she will be confident in them and able to live comfortably and healthfully with the consequences? There is a big difference, and I hope I am learning to understand & use that knowledge in my own life because making some critical adjustments in my own thinking may be the best thing I can do for my daughter.

And what about you? Are you willing to examine your own hopes? Gosh, I hope so.

Marjie Ruth
727-244-9011 (c)

sruth1@tampabay.rr.com

281 miles in one day to make a difference

On Wednesday, April 17, 2013, at the same time that others were speaking out about eating disorders across the United States and while the Eating Disorders Coalition was coordinating visits on Capitol Hill, I got up early and drove 281 miles round trip from my home in Tucson to the State Capital in Phoenix and back to share my story as a parent; as a family member.  I was grateful for the opportunity because as another parent put it to me after the briefing, only parents who've been through this "get it."  It's impossible to truly convey the story of this journey in just a few minutes.

The legislative briefing was sponsored by Senator Katie Hobbs of District 24 in Phoenix and coordinated by a group of dedicated people who are part of the Arizona chapter of the  NEDA STAR program.  A huge thank you to Senator Hobbs and to the organizing committee.

Four of us spoke (two of us are therapists, at least two are in recovery, and I'm the parent):  Sam Lample, Dena Cabrera, Jennifer Keyes, and Jennifer Aviles.

NEDA sent out an announcement about the briefing.  Senator Hobbs sent around an interoffice memo to all the Arizona legislators.  This event was an important first step.  A seed was planted.  This event, simply by being advertised although unfortunately not well-attended by the very legislators we hoped to attract (even offering lunch during a brief half hour session), brought eating disorders to the desks of their staff if not to the desks of our representatives themselves.  One of my representatives, Senator Steve Farley, stopped by her office, Senator Hobbs told me, to learn more about today's briefing.

I personally hope that perhaps next year there will be more interest that eventually, as has happened in, for example, Virginia, legislation will be passed for at least school screenings.  I learned that the Phoenix NEDA walk may have attracted as many as 200 people.  The one in Tucson attracted at least 30 to 40 [estimate].  Each step literally brings awareness to a situation that needs attention; to a cluster of brain disorders -- eating disorders -- that are not rare; in fact, the numbers are hidden in many cases because so many people -- girls and boys, men and women -- keep it a secret.

In addition, Senator Hobbs  picked up the (to me) priceless AED Eating Disorders Publication:  Critical Points for Early Recognition and Medical Risk Management in the Care of Individuals with Eating Disorders.  I had brought several copies of this publication to the briefing.  Several were taken.

F.E.A.S.T. and the AED have produced several publications, actually.  You can download and print  information by clicking here.

My intention is to write a letter to all the legislators from Southern Arizona and include a copy of both these publications.  [I find it helps me to write intentions publicly!  I didn't make much progress on this intent because I became ill and my family member's illness took a downturn.]

We all spoke to several points including the need for  managed care from the moment of diagnosis, the need for early diagnosis, the need for screening in schools and colleges/universities, the need for those who manage insurance companies' coverage to understand that treatment as long as necessary is the key to recovery, and to the myths of eating disorders.  The text of my presentation addresses additional issues.

I gave the text of my prepared talk to Senator Hobbs.  My talk was admittedly longer than the five minutes given to me (I timed it at 12 minutes, actually) but then how does one cram 25 years of trying to find help for my loved one and what I've learned so I can educate not only those who can make a difference (legislators) but also parents and family members (who so very much need support, too).  We ran out of time; I was unable to finish but I think I got some significant points across to those present.  I will work on a shortened version and provide a link here, later. 

The big point I want to repeat here is that without the comprehensive managed care of my loved one's Mental Health Team here in Tucson, I do not think she would be alive today to continue to take advantage of treatment that may possibly help her to extricate herself from her eating disorder.  A hospital here in Tucson stepped up with changes in protocol to help my family member address her eating disorder.  If this team and this hospital could do this, so can others.

But, here in Arizona, we need resources -- financial and human.  We need legislation to make a difference!  We need health insurance that provides comprehensive treatment for eating disorders -- brain dysfunction -- on parity with other diseases like cancer, like multiple sclerosis, like autism....

This morning, I learned of a talk by Emma Woolf  that was on the BBC.  She is in recovery from anorexia.  Her talk on her journey plus the latest research on the brain -- again, eating disorders are biologically-based brain disorders -- is so comprehensive, I'm providing a link here.  [I hope those who come across my blog will spend the 15 minutes she takes to talk about her experience and the knowledge she has gained.]

We all have so much work to do.  Following the session, a young woman whose sister recently passed away from anorexia spoke to me at length about her and her family's journey to try to help her sister.  I include this to remind readers that families are part of all of this, too.  We need support and a listening ear, too.  For how else can we keep going?

A huge thank you to all the people who are working on obtaining effective treatment for eating disorders.  A huge thank you to those who are devoting their lives to research on this biologically-based brain disorder.

Together, we can all 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......

Involving Your Local Schools - a CD-ROM of kits from NEDA

While visiting the Parents, Family and Friends Network of NEDA this morning, I was delighted to learn that NEDA will send a CD-ROM packet containing three updated as of November 1, 2011, information kits directed to (1) educators, (2) coaches, and athletic trainers, and (3) parents to schools in your area on your behalf.  Click here for more information about the kits and scroll down to the link provided.

Parents, you can click on the same link, click on the kit for parents, and download a valuable printed reference notebook.  I've put mine in a 3-ring binder.

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

Has the Tipping Point Been Reached? - Drs. Bulik and Ravin

This week two different internet news items caught my attention.

The first was a 56-minute presentation by Dr. Cynthia Bulik of the University of North Carolina at Chapel Hill at a Stockholm Psychiatry Lecture held at Karolinska Institutet, November 15, 2011.  The title of her talk is The Complex Dance of Genes and Environment in Eating Disorders and can be found here, thanks to You Tube!  Some of the slides she presents are graphic and can be triggering or very upsetting to those with either anorexia or bulimia.  They were important, I believe, for the thrust of her talk.  Dr. Bulik's lecture is hugely important not only for the scientific information she presents  but also because she has taken a step further and looked at the potential for possibly preventing the occurrence of eating disorders in the offspring of those with either eating disorders or the family propensity for those illnesses.  Those of us who attended the F.E.A.S.T. conference in early November in Alexandria, Virginia heard some of her points; this lecture is far more extensive. 

I was also excited to hear her state there is a genetic consortium of scientists to further the study of anorexia nervosa known as GCAN.  The website that is part of the Department of Psychiatry Eating Disorders Program at UNC Chapel Hill states, 

Since 2007, the University of North Carolina Eating Disorders Program has led a world effort to unite clinicians and researchers around the world in an effort to identify genes that may influence risk for eating disorders. This has resulted in the Genetic Consortium for Anorexia Nervosa (GCAN) which currently consists of researchers and clinicians from 16 countries around the world. Together with researcher from Kings College London, the UNC program has been honored to receive a grant from the Wellcome Trust (WTCCC3) to conduct genomewide association on over 4000 DNA samples from individuals with anorexia nervosa. All members of the consortium are gathering information about eating disorders course and genetic material (DNA) from any individual who currently has or has had an eating disorder in the past. This world-wide effort is inviting every person with current or past anorexia nervosa to take the time to roll up their sleeves and help us figure out the cause of eating disorders.

We are currently gathering information and genetic material (DNA from a blood sample) from women who have had anorexia nervosa at any time in their life. Information from this study will advance our understanding of the causes of anorexia nervosa and further our ability to develop more effective treatments and prevention strategies.
If you are female and have had anorexia nervosa at any time in your life, you are invited to participate in this study. Participation only takes 30 minutes and includes a blood draw.

Call Jessica Baker today at 919-966-1217 or her at jessica_baker@med.unc.edu if you are interested in donating your blood to help us unlock the genetic code of eating disorders.

Note that they are looking for participants for this study.   

The word consortium is what especially caught my attention because this concept - consortium - is spreading throughout the scientific world to bring research results forward faster, to obtain grants and donations to expedite that research, and to collect meaningful data that is understandable across fields.

So is consensus science.

The second item was Dr. Sarah Ravin's recent post titled, "Active Ingredients"  Dr. Ravin's post is extraordinary because she not only takes a firm, public stand on the approach to be taken when treating those with eating disorders, she also provides a flow chart for how one must treat a person with an eating disorder.  This post is important for scientific researchers, psychiatrists, medical doctors, therapists, nutritionists and families.  I would call it a "recommendation for best practices in the treatment of an eating disorder."

Her introduction is so very important -

To the patient’s detriment, many clinicians do not add the right ingredients at the right times in the right doses. For example, many individual therapy approaches focus initially on helping the patient develop insight and motivation to recover. Full nutrition is not required, or even encouraged, until the patient has lost a significant amount of weight. 

Many clinicians are simply using the wrong recipe.

Dr. Ravin goes on to list the essentials at each step as well as the issues that can wait.  The flow chart isn't for a month or even three months (the typical length of time paid for by insurance companies in this country, the latter figure of three months rather unusual).  Her chart covers a period of 12-18 months (!) and in closing  incorporates a list of must haves  before a parent sends a young person off to college or to live independently.  

Dr. Ravin highlights the importance of investigating the possibility of other factors such as brain disorders like anxiety, OCD, and depression and their treatment, something I've been pushing for for a long time in comments on Something Fishy and other websites because of my loved one's experience.  Too often families and therapists think a person will be "well" once they are re-nourished and in some cases that is true or seems to be true.  The symptoms seem to disappear.  Yet, the propensity is still there.  In many cases  this myth of "only an eating disorder" must be dispelled on behalf of those who fall back into the abyss and cannot seem to climb out because these and other illnesses have not been diagnosed, have not been treated, and the individuals have not been provided with the tools (also mentioned in Dr. Ravin's chart) to quell their anxiety or to "regulate emotions and tolerate distress."  This is where CBT (Cognitive Behavioral Therapy) and DBT (Dialectical Behavioral Therapy)  and other modalities are introduced.

I was so thrilled to see and read  Dr. Ravin's post as well as watch Dr. Bulik.  I know we've reached the tipping point.  Now with films like Someday Melissa and Miss Representation getting nationwide attention (the latter has already been screened here in Tucson by The Arizona List) and organizations like F.E.A.S.T., NEDA and its affiliates, and NAMI along with the attention of the National Institutes of Health's National Institute of Mental Health (thank you Dr. Insel!) we need to keep raising our voices and spreading the word.

A Description of Our Family Member's and Our Experience - 2016 update

[April 2016]

[This piece is periodically updated as more information becomes available.  The 2011 version was my presentation to a group of health care professionals.  A later version was my presentation during a lobby day in 2013 in Phoenix for State legislators.]


In 2011 I was asked to present "my story" at a meeting of the local chapter of the IAEDP, one of the eating disorder associations, so the care providers present (therapists, nutritionists, residential program folks, etc.) could hear my story along with the stories of two others, as well.  We were limited to about 15-20 minutes if I recall correctly.  Sometimes I wish I could also hear my family member's (FM) story for I know that I only know the tip of the iceberg of her experience(s), many of which I know have been gut-wrenching in all senses of that word.   

Yet FM's is the journey that brought me to change direction of this blog.  FM's journey also led me to dig deep into my self some more and to learn how to respond better to the situation and to her needs.

I am now the in-my-seventies family member of and firm advocate for a beloved person who has been fighting bulimia/anorexia for more than 27 years.  FM began her fight in her mid teens although in retrospect there were signs of picky eating many years before.    I intend to talk here about my experiences in learning how to navigate the system here in Tucson to help my FM obtain assistance as well as offer suggestions for next steps.

As I have written elsewhere on this blog, I fought bulimia for about 15 years until I decided I was sick and tired of being sick and tired.  I quit about 40 years ago and have been in recovery - an ongoing process.
  

My family has a history of depression, eating disorders/disordered eating, anxiety disorders, autism spectrum disorders and even suicide.  I did not know these details when my FM first came to me for help in the late 1980’s.   She told me she had begun purging at the suggestion of a friend in order to lose weight (she had been teased) and had become hooked into it, so much so that she lost weight and descended into anorexia, as well.  I have since learned a lot more about what happened to her around that time and in her college years as she has gradually opened up to me.   

Bottom line?  The propensity for this disorder runs in our extended family but I didn’t comprehend or understand this when her journey began or even mine.  I was told then  and and had no reason not to believe that one month of residential treatment was sufficient for her to get into recovery.  I hoped that was true because I didn't want her to continue as I had for so many years.  As I later learned, a month is not enough..... for anyone.  Now I strongly recommend 6 months, especially for those for whom Family Based Therapy at home does not work.

FM did receive additional outpatient therapy over the next few years from a variety of therapists and then, as far as we could tell, she was in recovery.  Her weight appeared stable; she looked great, actually.   Her eating remained disordered but she told us she was no longer purging.

I have come to firmly believe that ED’s can become coping mechanisms gone awry (I know not everyone fits this profile), are  genetically based biological brain disorders and even linked to other addictive behaviors as well as brain disorders like anxiety thanks to extensive research  of many people who are devoting their lives to the study of eating disorders.  I also now understand that I and so many other parents didn’t cause this.

[Interesting that there now exists (May 2015) a document titled The Nine Truths About Eating Disorders and many of my beliefs are included in that document.]  

I have also learned that our family environment and learned behavior from our own family experiences can provide a climate that may need to be modified  on behalf of our children who have been diagnosed so that the family can become supportive of their need to get into recovery.    

I have learned better ways of communicating thanks to the wonderful work of Dr. Xavier Amador who developed the theory of LEAP and wrote about it in his book, I Am Not Sick, I Don’t Need Help as well as a terrific exercise based on the book The Five Love Languages by Gary Chapman.   I wrote about this communication method and this exercise in an essay about communication on my blog.  And, I learned about the success of the Maudsley Method that encourages refeeding at home coupled with Family Based Therapy, otherwise known as FBT.  I first learned about this method after I discovered Laura Collins's book Eating with Your Anorexic on the shelf in the University of Arizona bookstore.

In the early days we parents turn to therapists and other practitioners in the field of eating disorders – relied on them, actually --  to help our offspring get on the path to recovery.   I also have believed for a long time that FM’s recovery depends on a team effort that includes family members.  And, as Dr. Janet Treasure in England and others are helping the profession to understand, this disease turns a family and its members upside down and inside out. 

By the time we get to therapists with our loved one, many of us are frantic with worry.  Not only that, but our family dynamics seem to be abnormal because everything and everyone is in disarray.  For example, there have been times when I thought I would die of sadness and pain because of my FM’s illness and my seeming inability to do anything to help her.  I was labeled overly enmeshed.  How could I not be?  How could anyone not be?  Many parents develop Post-Traumatic Stress Disorder.  I certainly did.

The team approach/family based therapy hardly existed as recently as 2004.   That’s when FM descended again further into her own hell, finally cried out for help from us, and we launched a concerted effort to help her in any way we could with what we knew at the time, which wasn’t much.  Thus began a series of several residential treatments and many hospitalizations, one occurring a few years ago and lasting about six months of in-patient treatment -- at her request and with her initiative – a major step forward.  A more recent placement at the same location lasted shortest of the lot (less than a couple of weeks) for she was re-admitted only to rebel (as many with ED do) and be discharged for being non-compliant.  The facility has since indicated they are unable to treat her.  What in the world can be done when this barrier is erected?  Just give up and let the person die?  No.  Not on my watch. 

Support for the care-er was non-existent in 2004 when my family member first went into treatment at a local well-known facility.  The family, as many of you know and perhaps learned during your training, was considered for many years and still by many to be the incubator for eating disorders, the mother being especially culpable.  This is a myth.  In fact, FM emerged from the first long-term residential experience with the conviction that pretty much everything was all my fault.  That facility has since re-examined all of its theories and practices to involve family members more and to work with them. However, after that first experience with Family Week, I lived under a cloud of guilt and blame until several things happened over the next two years.

 

The first was that two independent psychiatrists diagnosed FM with a co-occurring mental illness and emphasized, as well, a present and overwhelming depression and anxiety disorder.  What I had been suspecting for years – since FM's teens, actually, was finally being understood.  Not only that  but I did not have access to the same earlier diagnosis, unfortunately.  [I learned this years later in an authorized two-way discussion with the therapist who had worked with FM in 2004.]  Whether I could have done something or not, I do not know.  The diagnosis then was avoided by many in the field and believed to be impossible to change.

In 2007 thought I no longer needed to feel weird each time I spoke up and asked, “don’t you see something else? Something isn’t right. Please spend time with FM.”   In fact, more than 65 percent of people who develop eating disorders have a pre-existing anxiety disorder.  Since characteristics of the Autism Spectrum run in our family, that may be a factor, as well.

The second was that a friend of mine suggested I attend a Family to Family several week course offered by the local chapter of the National Alliance on Mental Illness, better known as NAMI.  This course provided me with phone numbers, information about what to do in a crisis, a better understanding of the brain and of mental illness, what resources were available in our community including a wonderful local resource called SAMHC, and an understanding parent group to which I came and they came for support.

The knowledge I gained was amazing and the frustration I heard from other parents who attended was amazing, too.  And, I know not too much has changed because I continue to periodically sit in waiting rooms.  If anything, because of the State of Arizona cutbacks, the situation is even worse because many people are now taking generics rather than the original medications that are critical for their state of mental health... or no longer are taking any medications at all because they have been dropped from the AHCCCS roles and cannot afford the cost.  Often, these generics aren't the same as the original medication.  My doctor explained that the drug companies that make the generics have the leeway of anywhere between 85 percent and 125 percent of accuracy in the amount of the drug needed per pill.  There have been draconian funding cuts to the behavioral health agencies that provide services, as well, so that more of the slack has had to be addressed by our local police and fire departments.  Fortunately we now have something called the Crisis Response Center.  Unfortunately, often these same people are stabilized and released back on the street again with little support to continue their treatment on the outside, especially those who have been mired in their illnesses for some time.

The third was that I joined Al-Anon.  I was unable to find an ED support group for family members of those with eating disorders.  This group and the people on  (that no longer exists, I believe) “Something Fishy” listserv literally saved my life.  Something Fishy disbanded.  However, F.E.A.S.T. also maintains a site called Around the Dinner Table.  We shared and continue to share our experience, our strength and our hope.  Not everything applies but a lot does.  As the saying goes, “Take what you need, and leave the rest.”

And fourth, I was referred to an excellent therapist who took me on as her patient and has continued to work with me so I could/can develop tools and behaviors that  help me in my role as advocate.  Her guidance also helped me to replace my ingrained at times unavoidable - given my FM's physical health - and hysterical involvement with healthier boundaries. 

After my FM returned to her destructive behaviors after one four-month period of treatment and before three more recent treatments (the most recent being a full year), I despaired and my therapist referred me to a psychiatrist who interviewed me at length, has been following me for more than three years, and who prescribed two medications (one of which I no longer need to take) that with our joint tweaking has helped me deal with this ongoing and other situations within my family, including the increasing ill health of my mother and her eventual death in 2009 and its aftermath.

Prior to pulling all of these resources together, I would go to bed at night and feel my heart beating raggedly in my chest.  I wasn’t sleeping well.  I was terrified that at any time I would receive a call that my FM had died.  Truthfully, I still know that this phone call or visit might happen.  FM insisted on living separately after the first two-month residential treatment experience in 2005 - the parentectomy thing.  For a time, every time I heard a fire engine or saw an ambulance, knowing that my FM had called these for help on many occasions, I would think the worst.  I had been overwhelmed watching my FM’s sabotage of her self.  My marriage was suffering.  I knew I had to do something. And I learned that, like many people in a similar situation, I was suffering from post-traumatic stress disorder and I needed to get help myself.

I began to read and learn.  I read all the materials I could on eating disorders and mental illness.   I acquainted myself with the work and online materials of the National Eating Disorders Association, NEDA.  I began to write about my experiences in dealing with the system here.  I continue to keep a log of everything including all medical records and emails.   Later I became aware of the on-line group F.E.A.S.T. 

For those family members reading here, because of HIPAA laws, often those who care for our loved ones never receive critical information from previous experiences/hospitalizations including, for example, the names of medications that are contraindicated or don’t work.  I began to feel comfortable enough with my experience to share it with other's  – both my mistakes and our successes. 
 

Because FM is an adult, I wrote an essay on my blog that includes steps one can take if one is the parent of an adult with an eating disorder.

This journey has been awful, not only for me but also for my family member.

Beginning in August 2007 after learning about my family member's additional diagnoses, I needed to initiate another Title 36 episode because no one else who was knowledgeable about the situation would.  The only other time one had been initiated was by two doctors at the hospital to which she was transferred from the first treatment facility in 2004  She had been dismissed (ejected is a better word) from treatment by an ED residential facility for non-compliance (so common, especially for the first month or two in treatment). I began to live in my car (so it seemed) for hours each day taking FM at her determined to get well request to therapy sessions, to meetings with a psychiatrist, to group sessions, to medical doctor appointment, to labs .... etc. in order to be admitted to treatment again.  It was not safe for FM to drive herself.

 

I spent a chunk of many days in the waiting room of one of the behavioral health providers here learning by observing, while I waited, about others' experiences.  There were times when I could have cried.  So many times, people would come to the facility having had to take at least two buses to get there, only to arrive later than their appointment was scheduled and told to reschedule.  Family members and/or friends would take precious time off to get their family member to the facility to avoid missing an appointment.  Others, because of their mental illness, would become confused and lacking an advocate would forget what it was they were to do next or forgot to have their prescription renewed and had to wait for an appointment to get more.  Sometimes they need to wait until the medication is approved by the carrier.  What then?  What about withdrawal symptoms from missed doses?  Some people who came in were belligerent and upset others who were waiting their turn.  I witnessed so much.

I also lived the frustration and sadness of trying to help FM navigate the system only to see FM fall through the cracks and almost die -- at least four times -- because although she was and continues to be officially Seriously Mentally Ill (SMI) and assigned to a behavioral health agency, due to high turnover of staff at that time no one was keeping tabs or because eating disorders are still totally misunderstood by many or because I did not have the right to learn of missed appointments (HIPAA) and no one from the agency followed up or because, characteristic of her illness, she refused to participate or seek treatment.

Thanks to my NAMI class I learned who to call and where to go.  I was present at meetings whenever I could be and was allowed to be and took voluminous notes.   It’s really important that family members ask for their loved one’s consent to do this.  FM gave consent.  Also know, however, that even without consent it is legal and okay to report changes in behavior to your loved one’s doctors and therapist.  Parents are with their children far longer than the hour in the doctor’s or therapist’s office!  Some health care providers really do not like to be contacted but a short note will document the situation, something that may be important to refer to later.  Again, refer to that truths document.  

I continue to worry about those who do not have advocates.  I wonder about those who show up at emergency rooms and are thrown out because they are disruptive when in fact they desperately need help and would not have gone there in the first place if they didn't (I know this happens; I saw it happen.  Parents need advocates.  So do adults.).  

I know there are still [2016] hospital staff here that simply do not understand eating disorders -- imagine sitting in a locked down area in the ER and having a doctor ask a person with an ED about their "regularity", hearing them say they are constipated, and then hearing the doctor offer a laxative!!!??  or watching as nurses administer a large dose of a medication that was contraindicated for FM (learned at the same hospital during a previous ER admission and in their records) only to send FM into an extreme panic attack (this is called a paradoxical effect)  that culminated in an escape from the ER with an IV still in place?  Note that even getting into the ER and staying there was a hugely scary undertaking for FM.  FM walked two miles home.  I had left the hospital earlier after being reassured that she would be spending the night there and was fourteen miles east of the hospital when I received a call from the hospital on my cellphone telling me that I was observed picking FM up after her escape.  As you might imagine, I was shocked by the false accusation, furious at the staff,  and I did not sleep well that night wondering where she was and how she was until she called me the next day.

Can you imagine sleeping on the floor overnight in a cubicle in a section of the ER in order to ensure that your loved one will be seen by a doctor and will remain there long enough to be evaluated?  Without resorting to Title 36 procedures in the first two years or so - actually not really being aware of what Title 36 offered, I did that and several other things until I realized I'd run out of options and the doctors on staff just didn't "get it".

I know things can be better because one hospital here stepped up to the situation and worked to understand what was needed.  The staff was wonderful.  Now that hospital's psychiatric ward has been closed and the hospital's related longer-term facility has also been closed due to  lack of funds.  Fortunately the Tucson area now has the Crisis Response Center, the centralized place for anyone in mental health crisis to go for help.

There was a behavioral health provider team (her team) in action here that went to extraordinary lengths to understand eating disorders and to provide the best possible opportunities for recovery although residential treatment is difficult to obtain through the county system and as we know very expensive for the amount of time that should be spent in a facility to recover the lost “self” and the lost ability to feel hunger and/or fullness, among other issues.  Residential treatment for adults and even minors is not covered by many, many insurance companies and states nationwide.  This needs to change, too.  There is an Eating Disorder Coalition working in Washington, DC, to effect that change.  Read the most recent legislation update here.   NAMI is very active, as well, to obtain parity with coverage of other illnesses.

Take note:  there is precedent in the State of Arizona now of treatment arranged and paid for by a government agency for an adult.  There is a long-standing precedent for treatment paid for a child under the age of 19.  Private insurance companies should, in my opinion, follow suit.  Whether funding is available is, of course, another factor.

If the hospital I referred to and my family member's first formal team can learn and change, so can others.  But, it takes resources. The AED has published a booklet that can help.  Distribution is desperately needed.  [See list on the right side of my blog for a link to AED and directly to that booklet.]  

Freelance Science Writer Carrie Arnold recently completed a comprehensive book about ED titled Decoding Anorexia:  How Breakthroughs in Science Offer Hope for Eating Disorders.  This book could/should be required reading for all in medical school and further by all in the field who treat or might treat someone with an eating disorder.  This book is especially valuable to parents and to those adults with the illness who are determined to recover.

However, I realized that no matter how much I learned and understood, the bottom line was that FM, an adult, needed to come to the conclusion herself that she needed help and that she needed to ask for help. In fact, she does ask for help only to succumb to the effects of her brain disorder that sabotages what her "self" so desperately needs.

Unfortunately, the act of asking for help immediately characterizes her and others as not a "danger to self" and yet she and they are a danger to self because the (as I just wrote) this brain disorder sabotages what her "self" so desperately needs.


A few years back a respected member of the medical profession - a pediatrician - also succumbed to this disease.  A doctor.  Someone knowledgeable about the workings of the human body and brain.  Does not this tragedy indicate how deadly and distorting of reality this disease can be?

FM was officially declared Seriously Mentally Ill for the first time in early 2005 and was court-ordered into treatment as I wrote earlier, following Title 36 procedures instituted by wise doctors at the hospital to which FM was transferred from the first residential facility that ejected her after only a few days in late 2004 when she refused to accept treatment and follow procedures.  She became eligible for a variety of services.  Although she became and continues to be a client of a local behavioral health provider, at that time she slipped through the cracks and because of HIPAA laws, as I stated earlier, I was unaware of several things until a crisis developed.   

As well, because eating disorders were - actually, are -- still not well understood, assumptions regarding my daughter’s abilities and state of mind were incorrect and she received substandard care.   In other words, she could present herself as knowledgeable and “together” but, in fact, she could not sustain this state given her health, both physical and mental.

As I indicated above,  her behavioral health team continued to engage with her for her ongoing treatment.  Getting there took a lot of effort by all members of her team, including me.  I did not hesitated to speak up, provide materials, and advocate for her.  She has a different team now that operates under different circumstances.  

However, I learned early on that in spite of a court order that in this case was still in place, a family is often left to make decisions like petitioning again under Title 36 for involuntary evaluation.  Each time I have petitioned, I’ve wrestled with the decision knowing not only would this course of action infuriate her (and, of course, it did), it might also limit her possibilities later in life.  Yet, I believed, the step would save her from herself and hopefully save her life.  I also learned that in spite of petitioning and seeing red flags everywhere, it’s possible for a petition to be denied anyway.  Hers was dismissed at a critical time.   I experienced what it was like to come upon the results of a desperate act that I knew was coming (2009).  

As an important aside, please advise your client’s family members that they should not under any circumstances go alone to their loved ones place of residence when they suspect that something bad has happened.  Call 911 and explain the situation and ask for a welfare check.  Or meet the officer or team but wait outside.

Things became worse after that episode that was followed later by hospitalization when her weight and physical state had plummeted even further.  Imagine needing to call a lead person of the oversight organization personally to intervene to get your family member admitted to treatment in local facility and then finally hospitalized only to experience the horror of learning your daughter was treated incorrectly in the hospital, after one horrendous episode of electrolyte imbalance at a local residential facility that advertised itself to treat eating disorders, to the possible point of compete disability? 

This is a point that  bears repeating, especially if your loved ones binges and purges.  Her or his electrolytes can become terribly unbalanced and it's critical that the staff know that your loved one does binge and purge and that blood electrolytes are assessed.  Being provided with just intravenous saline could cause more harm; potassium may also be needed.

Here we are in the Spring of 2016 following one year of inpatient and 3 years of outpatient and FM's eating disorder is firmly entrenched.  Several recent visits to the ER of local hospitals have reminded me that some doctors still do not know enough to recognize, for example, the symptoms of binging and purging even when my FM (and I) have said that she has bulimia.  One of the more recent ER visit and subsequent hospitalization occurred because FM's electrolytes were 2.1 for potassium, 25 for sodium, and low calcium.  She was slurring her words upon arrival by ambulance because her brain was not functioning - a doctor assumed she was under the influence of something.  Only when the bloodwork came back shortly afterwards did the ER go into action and then they almost lost her because they gave her saline solution without potassium.  When her potassium fell further, they realized their error. She was subsequently admitted to the hospital but as has been the pattern, FM demanded to be released two days later.  A similar event occurred only a couple of weeks before at a different ER.  Both facilities have her records.  What's the problem?  For starters Arizona does not legally recognize eating disorders as illnesses to be treated and paid for by insurance.

After a year of merry-go-round of admissions to the crisis center, hospitalizations, and then discharges with nothing gained, I became my FM's guardian in hopes of effecting better treatment for her.  My FM has been in the hospital for almost five weeks.  I am so very grateful that she is being helped.  Plans are being put in place for next steps.  Her weight is gradually approaching enough for her to be thoughtful and have more insight.  But, she's not there yet.  Advocacy has continued to be my full-time occupation.

To wrap up,  I’m going change course and focus on what I wish would be available to every parent whose offspring starts to show signs of an eating disorder.  

Much is summarized in this letter addressed to the parent.

Second, I wish all family doctors and dentists would be trained to know how to detect an eating disorder and what to do about it including what tests should immediately be run.  This information is available in a booklet from the the American Academy for Eating Disorders . I recently received materials that I hope to distribute to local area hospitals.  There's legislation moving through at the national level to address this and other facets of treatment. The organization F.E.A.S.T. - Families Empowered and Supporting Treatment of Eating Disorders -  founded by Laura Collins and currently led by Leah Dean maintains similar information on its website.  The Anna Westin Act is making its way through Congress thanks to the growing support and initial introduction of the legislation by bipartisan legislators, the diligence of countless volunteers, parents, family members all spurred on by the Eating Disorders Coalition.

Third I was delighted to learn in 2010 that the IAEDP began a local chapter here because I believed its presence might speed things up.   Much work needs to be done. There needs to be a list of all qualified and up-to-date in eating disorder theory and practice, including Family Based Therapy, therapists, nutritionists, and psychiatrists.  This list should be available in doctor’s offices and at the least at local hospitals in the social worker’s offices, ER’s, and in school and college counseling offices.

Fourth, NAMI needs to incorporate information about eating disorders into its local efforts and programs.  NAMI need to focus on each state and to work with legislators in states that do not recognize eating disorders as treatable biologically-based mental illnesses (similar to OCD, bipolar disorder, borderline personality disorder [which isn't a personality disorder but rather an emotional regulation disorder] depression, and schizophrenia).  Arizona is one of them.  Those with anxiety disorders, BPD and other mental illness often develop eating disorders.  The two often exist together.  They needed to be treated at the same time.

Fifth, local educational institutions starting at the grade school level should have the NEDA  publications about coaching and for teachers in their counseling offices as well as in their sports departments.

In fact NEDA will send information upon request to any educational institution.  Here is the link to make that happen.  Scan down the page for information on how to do this.

Sixth, Tucson desperately need post-residential and post- in-hospital treatment housing for adults working on recovery.   I think the Haven here in Tucson provides a working model for something that could be developed.  I believe it’s critical to have support services in-house something along the lines of retirement communities but for younger folks whose capabilities are on a higher level, as are most of those with eating disorders.

Finally, we parents need compassion and understanding from the therapeutic community.  It’s frightening and disorienting to watch a healthy young person get trapped in a path towards death.  We need more parent support groups or the knowledge of the existence of parent support groups that meet at a convenient time and often.  I know one of us presenting here sponsors one.  There are guidelines through NEDA regarding how to start one and how to manage it.

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.