Welcome

When I created this blog, I was "getting on" in my early sixties, hence the blog name. However, my adult daughter's eating disorder and co-occurring emotional dysregulation disorder and other co-morbidities - ongoing for about 33 years - became and was our focus as we attempted to help her get into recovery. By learning about, reflecting on, reading about, attending conferences and writing about eating and brain disorders, I created a place to blog what I've learned. I hope this blog will be of use to others, especially families of and adult sufferers themselves to help them get into recovery. I update posts from time and the update date will be present at the top of the post.

Sadly, my daughter passed away in early October 2021 mainly because her body became so malnourished that she was immunocompromised, contracted a severe infection that was not properly addressed during an earlier hospital stay the month before, and developed an overwhelming non-covid pneumonia following surgery to save her life. I believe she should have been able to receive palliative care but Arizona, our country, and even the professionals trained in the treatment of eating disorders, particularly anorexia, are not "there" yet. I address the issue of palliative care in a recent post below, initially written in November 2021. I am not a certified eating disorder specialist. I am an Expert by Experience and college-educated with a BA in Community Work with an additional certificate in a one-year program in Business Administration from the same institution.

I am passionate about all of this because, as Shakespeare wrote in The Taming of the Shrew, Act 4, Scene 3: "My tongue will tell the anger [and sadness] of my heart or else my heart, concealing it, will break. And, rather than it shall, I will be free even to the uttermost, as I please in words."[2016]

Travel Guide

If you're new to my blog, I recommend you begin on the right side and take a look at the "Of Note" offerings. Read Dr. Cynthia Bulik's recent published interview (5/4/22) "Rethinking Eating Disorders" if you want to print an easy-to-understand professional's expert opinion about anorexia for your family doctor or the therapist. [Early intervention is absolutely critical. For those whose eating disorder is categorized as entrenched or severe and enduring, read the editorial comment by Stephen Touyz and Philipa Hay for a new approach about treatment. It is possible for your loved one to recover! I have also attached a link here for additional papers on the subject of severe and entrenched eating disorders. If you are a family member or friend of an adult with an eating disorder and have been at this for awhile, I refer you to the posts within the title "Adult Eating Disorders and Recovery Tools" found in the Index on the right hand side of this site. As well, in the "Of Note" section take a look at those posts with an asterisk. If you're a parent and need support, look for posts in the Index about parent support or parent toolbox. In my opinion, the best book to buy, to refer to constantly and to share with members of the medical/psychiatric profession is "Sick Enough: A Guide to the Medical Complications of Eating Disorders" by Jennifer L. Gaudiani MD, CEDS, FAED. "Dr. Gaudiani aims to improve medical diagnosis and treatment, motivate recovery, and validate the lived experiences of individuals of all body shapes and sizes, while firmly rejecting dieting culture." I recommend two groups who will support you on your journey - F.E.A.S.T and the National Alliance for Eating Disorders. Both maintain websites and Facebook private groups.
Showing posts with label improved legislation re mental illness. Show all posts
Showing posts with label improved legislation re mental illness. Show all posts

Friday, February 24, 2017

2016 - The Year that Congress Passed and President Obama Signed Eating Disorders Legislation

On December 13, 2016, President Barack Obama signed H.R. 34, the 21st Century Cures Act, into Law.  This historic bipartisan legislation included included key provisions from the Anna Westin Act (S. 1865/H.R. 2515) including clarification of existing mental health parity law to improve health insurance coverage for eating disorders and life-saving residential treatment, early identification of eating disorders training for health professionals, and enhanced information and resources to help early identification of eating disorders by the public.

This legislation passed the House of Representatives with a 392-26 vote and then passed the Senate by 94-5.  I believe all Arizona's senators and representatives voted in favor.   Amazingly wonderful!

A one-page summary of the Anna Westin Act can be found here accompanied by a personal account of my trip to Washington, DC to lobby for this legislation, also here.  Amazingly,  the Anna Westin Act received the bipartisan support of 101 Senators and Congressmen (36 Republicans and 65 Democrats) including, from Arizona, Rep. Kyrsten Sinema and Rep. Ann Kirkpatrick who signed on as co-sponsors of the bill.

A very special thank you to them and to Senator Amy Klobuchar [D-MN] and Congressman Ted Deutch (D-FL] who introduced the legislation in 2015 along with their colleagues Senator Kelly Ayotte [R-NH], Congresswoman Ileana Ros-Lehtinen (R-FL], Senator Tammy Baldwin [D-WI] and Senator Shelley Moore Capito [R-WV].

[Blog note:  I spent most of 2016 advocating for my family member while she spent more than 180 days in hospitals and ER's as we attempted to keep her alive through legal means as well as imploring her mental health care provider and an insurance company to help her.   This periodic hospitalization continues.  We are grateful for the care including the important involvement of a special team and the coverage for that care that she has received, for without it, I truly do not think she would be alive today.

As you will learn here, our State Legislature has done nothing to provide Medicaid Coverage specifically for eating disorders because the one piece of legislation that could have started Arizona on the road to providing coverage died in a subcommittee.

I am so very thankful that the 21st Century Cures and Mental Health Reform Act incorporating the Anna Westin Act became law and to the many people who made it happen, starting with Kitty Westin whose telephone number was given to me years ago by a nurse here in an ER.  Kitty, the mother of Anna Westin who died more than 16 years ago and after whom the eating disorder legislation is named, picked up the phone at her home and talked with me perhaps for a half hour giving me encouragement to keep going in spite of enormous odds.

Perhaps something now can happen in Arizona so people with an eating disorder diagnosis will get the life-saving treatment they need and early so they will not go through what my family member and we have endured for so many years.

Again, those with what is known as Severe and Enduring Eating Disorders (SE-AN) deserve a chance and opportunity to get into recovery.  I recommend reading this piece found in the "Of Note" section by Stephen Touyz and Philipa Hay, published in the Journal of Eating Disorders (2015) 3:26.]


Saturday, November 7, 2015

The Eating Disorders Coalition Lobby Day - October 28, 2015 - The Anna Westin Act


From the Mom's March on Tuesday to Lobby Day on Wednesday!

This year, as I've mentioned in previous posts and updates, we are lobbying for the passage of the Anna Westin Act.  As you'll note at the top of the page above, the Act has the dual designation H.R. 2515 and S. 1865.  This is quite significant - a document in the House and in the Senate, right out of the gate.  Rather than review here what's said in the document, I invite you to read this document.

I also invite you to visit the website of the Eating Disorders Coalition - http://www.eatingdisorderscoalition.org/   

When I originally wrote this last Fall, there were several links the addresses for which have been changed or deleted, unfortunately.  Among them was a great link to an Advocate's Toolbox that clearly explained the training we received.  We learned how to focus on the key points we wanted to make to each Congressperson in the half hour we had.  For newcomers to the advocacy process, this piece also clearly explained how a bill progresses to signature.  I imagine that with some diligence you may be able to find this information by going to the main EDC website linked above.

I am very happy to report that two of our Arizona legislators - Representatives Ann Kirkpatrick and Kyrsten Sinema have signed on as co-sponsors.

I urge you to ask your senators and representatives to support this legislation and to get it passed as soon as possible. 

So, now, I invite you to think about this following information:  The United States of America is composed of 50 states, a federal district (the District of Columbia), five territories and other possessions.  Each state has representation at the federal level - 2 senators and a varying number of representatives depending on the population of the individual state.  There are currently 435 voting members in the House. California, the most populous state, has 53 representatives.  My state, Arizona, has 2 senators and 9 representatives. 

Arizona is also estimated to have, out of a total population of 6,392,017, 66,934 males and 147,167 females with eating disorders.

The Eating Disorders Coalition tasks itself twice a year with the responsibility of organizing a lobby day and sending teams of citizen lobbyists to meet with their senators and representatives.  This year we learned that more than 300 people signed up to lobby - some states had many lobbyists, others as few as 1 or 2.  All came paying their own way and finding lodging as they were able.

The scheduling of each team's agenda, all with different people in different locations (except for the common meetings), boggles my mind!!!!  Having arranged conferences with breakout rooms, I have some experience with scheduling (including lunch and breaks), but the task the Eating Disorders Coalition team takes on twice a year is absolutely amazing and deserves accolades.  For this effort alone, I have become a financial supporter of the EDC and I hope others have or will, too.  

Omigosh.  Think about it.

As an example, our team's (8 people) lobbying day schedule included a training (for everyone) from 8 a.m. to 10:15 a.m. at a location quite close to Capitol Hill and the Senate/House office buildings.  It ended with a lobby day wrap up starting at about 4:30 pm back at our training location.  In between, our team met with, for half an hour, staff members of our two senators in the morning, broke for lunch in one of the cafeterias from about noon until 2 p.m., at which time we all gathered to hear more about the Anna Westin Act of 2015 and to meet two of the original sponsors of the bill, and then continued our lobbying from 3-4:30 pm in the offices of 3 of our 9 representatives. We walked a lot and very fast between the offices and buildings of our Congressional representatives.  Thank goodness for tunnels and helpful people who showed us the way given that it rained pretty much all day.

So think about this again - 300 lobbyists, 100 Senators, 435 Representatives.   Not only are more lobbyists needed, the EDC also must identify which of the Senators and Representatives are available and willing to set aside time for us and among those, which are key players in the advancement of the legislation (e.g. on what committees do they sit).  I realize it's more complicated even than this, but I wanted to try to get a handle on what was involved to put this on.

Our Arizona team of 8, most of whom were from the Phoenix and points northwest area except for me, the lone member from Southern Arizona, in the morning met in the Russell Senate Building with (in order) the staff members of Senator Jeff Flake and Senator John McCain in nearby conference rooms reserved for that purpose.  

Our team leader and a mom, Miriam, presented information derived from the above flyer - Training, Clarity of Parity and Truth in Advertising and statistics specific to our State regarding the number of people affected by eating disorders.  She noted that the Anna Westin Act has a Congressional Budget Score of 0 meaning that the cost of passing the Act is very low (funds have already been allocated to the NIMH and SAMHSA in connection with the Mental Health Parity and Addiction Equity Act of 2008) and summarized the purpose of our visit. Then two team members spoke of their individual experience, either as a mother or a person in recovery or as (in our team's case) a member of the staff of an eating disorder residential treatment facility.   I spoke twice - once in the morning and once in the afternoon, presenting as the mother of a 42 year old woman who has been fighting her eating disorder for 27 years and who had been diagnosed before there was much if any understanding about and the treatment of eating disorders.  Excellent counterpoints were presented by team members in recovery who had benefited from early diagnosis and effective, knowledgeable treatment by health professionals. We then invited questions from the staff members.

I hope to obtain a team photo, but in the meantime here I am outside the door of Senator McCain:



We felt welcomed and listened to and hopeful that the Senators would be persuaded to sign on.

We then walked the tunnel to I think the basement of the Dirksen Building where we enjoyed lunch in one of the many cafeterias available.  Nearby was the Senate Gift shop that we all explored, as well.

At 2 p.m. we gathered in a large meeting room in Dirksen (106) to hear from Kitty Westin and to meet original sponsors of the bill Senator Amy Klobuchar (MN-D) and Senator Kelly Ayotte (NH-R).  Notice the bipartisan (meaning from different parties) support.  In fact, the act has significant bipartisan support now in both the House and the Senate.  Each Senator received an award.

From there our team went on to the House Office Buildings - Longworth House and Cannon House - to meet and talk with staff members of (in order) Congresswoman Martha McSally (AZ-R), Congressman David Schweikert (AZ-R), and Congressman Paul Gosar.  We learned that while the senators in the "Upper House" had significant amenities such as conference meeting rooms, our representatives in the "lower house" devise creative solutions in order to meet with groups of lobbyists such as ourselves ranging from the corridor outside the office to a waiting area within an office to cafeteria areas and even to a storage area across the hall that has comfortable chairs!!  Our team managed  to present our case to all and again were welcomed and listened to with undivided attention.  Here I am at the door of Representative Martha McSally who I've had the pleasure of meeting and speaking to in private (about other issues like the A-10) at two gatherings prior to her decision to run for office.



We wrapped up our presentations after 4:30 p.m. and hurried back from C Street and up 2nd Street to the Capitol Hill Lutheran Church of the Reformation nearby.  Fortunately since my hotel was nearby, I was able to guide us all there quickly.  Everyone answered questions and shared our experiences before disbanding to either hurry and catch transportation home or to find a restaurant at which to have dinner.

I returned to my hotel and hopefully made my way to The Sonoma on Pennsylvania Avenue where I had not made a reservation figuring, mistakenly, that 6 p.m. wasn't too late to show up. (I had eaten at the Sonoma on Monday night arriving at 5:30 and hardly anyone was there.)  Well, the place was hopping with people pouring in and climbing upstairs to what I assumed was a Happy Hour area.  I was shown to a little table over in the corner near the bar (that suited me just fine), ordered a glass of wine and a bowl of soup to start.  I looked up to see a familiar face walk in - that of Heidrun D who had traveled down from the Boston area for the luncheon and March on Tuesday and lobby day Wednesday.  I invited her to join me and we spent quite awhile chatting and reviewing our experiences in Washington, DC as well as sharing our own stories.  

Thursday morning I had the luxury of sleeping in, did a bit of tourist-ing since I was so near everything and then made my way to the airport for the trip home.   I checked my bag so I wouldn't need to worry about it and settled in to finish a book.  I thought you'd get a kick out of the airport scene that greeted everyone at the Southwest counter.




What an action and emotion-packed trip!



Thursday, November 13, 2014

What about HIPAA and How to Overcome Barriers

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

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

Here is a link for personal representatives.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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



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

Thursday, April 18, 2013

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.

Tuesday, April 9, 2013

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!!

Thursday, April 4, 2013

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

Big data and the consequent availability of health information about people in Sweden illustrates what could happen in our country -- and is happening, actually, in some areas such as Multiple Sclerosis and Autism -- if more information was available in real time.
Dr. Thomas Insel, director of the National Institutes of Mental Health, blogs frequently on a variety of subjects.  We are fortunate that he takes the time to do so to summarize the advances that have been made.  We are also fortunate that President Obama drew world-wide attention to the recently revealed NIH initiative to revolutionize our understanding of the human brain.
Although his title focuses on Schizophrenia, Dr. Insel closes this essay with the observation, "These new numbers from Sweden should remind us that serious mental illness is a health disparity issue. One way to think about losing 13 – 15 years of life expectancy is to realize that people with serious mental illness have not benefitted fully from the gains in longevity over the past half century. We frequently say “no health without mental health” to stress the importance of treating mental illness as a pathway to better health outcomes in society. For those with schizophrenia, even in the most advanced health care system in the world, we are still facing early mortality from lack of diagnosis and treatment of medical illnesses."
If all goes according to plan, I shortly will be speaking succinctly on what the lack of parity and the presence of myths  did to interfere with appropriate care for my beloved family member who has been battling an eating disorder for more than 25 years.  Thanks to the work of the NIMH, the Academy for Eating Disorders, the Eating Disorders Coalition, and F.E.A.S.T. among others, advances are being made to get information into the hands of those who can make a difference so that someone diagnosed with an eating disorder can get the best possible treatment quickly.
A big hurdle is persuading everyone to stay current.  Membership in these three organizations alone combined with following advances noted by NIMH, which includes reading, comprehending and utilizing the information provided, would make a huge difference.