Sunday, October 19, 2014

Advocacy Mondays: BMI Advocacy Update

A quick update on recent advocacy initiative on school-based BMI screening, surveillance and reporting.

EDC reports the following:

As a result of the Dear Colleague letter and conversations on our behalf with CDC about the concerns expressed within the Facts and Concerns About School-Based BMI Screening, Surveillance and Reporting , CDC decided to IMMEDIATELY start working on several changes to improve availability of information to schools conducting in-school screenings!! These immediate changes include:
  • CDC will update changes to the BMI measurement in schools information available on their Healthy Youth webpage:
    • Create a web page that emphasizes the safeguards and considerations outlined within the BMI Measurement in Schools journal article and executive summary
    • Send out the new page to CDC grantees and CDC partner organizations to disseminate
    • Offer the new page to the Department of Education to send out through their grantees and partner networks
  • Provided targeted webinars on this topic to:
    • Department of Education grantees (e.g., PEP grantees)
    • Presidential Youth Fitness Program grantees
    • CDC grantees funded for school health strategies (note: these make take more time to schedule and/or record)
  • Add cautionary, safeguard language to CDC’s BMI tool for school calculator webpage.
This is, in a word (actually 2 words),  Pretty Fantastic!

One more thing:  to help ensure that CDC  follows through on the request please call your Member of the House of Representatives and ask them to sign on to the Dear Colleague letter by Close of Business, Monday October 27, 2014. 

To make it easy full script for the phone call can be found here: http://www.eatingdisorderscoalition.org/documents/FallAdvocacyandLetters.pdf

And see here for some media coverage of the matter.   Top down and bottom up!


Monday, October 13, 2014

Advocacy Mondays: March Recap

M.O.M. (Mothers and Others March) Recap from F.E.A.S.T. Board Member, March Social Media Committee Member and Mom, Becky Henry MeCapitol.JPG

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As the plane left Minnesota heading to D.C., the reality set in that we were changing history with this first ever joining of forces by over 29 eating disorders organizations to change how these biological brain illnesses are seen, researched and treated. You see, over 15 years ago MN Senator Paul Wellstone told early eating disorders Mom Pioneer  Kitty Westin, "Kitty, what you need to do is bring a group of angry mothers to Washington D.C. to get the attention of Congress." It was actually about to happen! Finally. After too many years of moms silenced behind locked doors in shame and fear while our children die and some, including my firstborn Jessica, are lost indefinitely as eating disorders have hijacked them from our lives, we put aside different agendas, different perspectives and joined forces, arm in arm.Jessica.png

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M.O.M. March Planning Committee member Cherie Monarch breathed life to this dream with a conversation with Debra Schlesinger in early 2014.  Eleven years ago Debra's daughter Nicole's life was taken by an eating disorder, just as it was beginning.  Debra has been helping other moms to cope and advocate through her volunteer work with EDRS, her Facebook groups; Mothers Against Eating Disorders (MAED), MAED Advocacy and Activism and MAED Professionals.

Every non-profit in the field throughout the world was invited to the M.O.M. March. Twenty-nine came to join hands with us. This is unprecedented.moms at hotel.JPG

Arriving at the beautiful J.W. Marriott hotel in D.C. I was embraced by mothers, some of whom I'd met before and some I'd only known via social media. There are videos and more photos on the MOM March Facebook page. planners.JPG

I thought I'd have lots of prep work to help with, but our fearless and competent leadership on the planning team; Johanna Kandel, Founder of The Alliance for Eating Disorders, Kathleen MacDonald, Policy and Communications Director of The Eating Disorders Coalition, Cherie Monarch and Debra Schlesinger of MAED had it handled...as they had for months and we got to go relax and enjoy a meal together with other moms who'd arrived.cherie capitol night.JPG

Monday night Cherie and I walked to the West Lawn of the Capitol to make sure we knew where to go in the morning.  An amazing sight!  Car_flowers march.JPG

Tuesday morning after F.E.A.S.T. Founder Laura Collins and our awesome Uber Cab driver Hanna assisted us in loading over 30 boxes into Hanna's giant SUV we headed to The West Lawn of the Capitol under a cloudy sky. We were met by Johanna Kandel's big team from The Alliance who unloaded and  set everything up.  unloading car.JPG


Four hours later over 250 mothers and others had arrived and the speakers began. An inspiring line-up of 16 speakers including; moms, recovered people, an attorney, a doctor, and therapists filled the afternoon with facts, hope, reality and motivation to keep moving forward. You can see the bios, photos and some of the speeches on the www.marchagainsted.com schedule page and the M.O.M. March Facebook page. If you have photos please share on the facebook page.

The clouds parted, the sun came out and Jenn Friedman and Faith Yesner provided touching music.

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As mothers and others were asked to raise the signs created earlier that morning, there wasn't a dry eye as we saw the lawn filled with the faces of our children against the sea of purple and green shirts.  

Our hope is that one day we can eliminate the need for any of us standing there in purple shirts symbolizing children still in recovery and recovered because recovery will be the norm. We also aim to make sure no more green shirts will be added for mothers and others who had a loved one die from eating disorders.

We regrouped for a fantastic and refreshing dinner at the Hard Rock Cafe. That hamburger and air conditioning were just what I needed after the long hot day. We were all exhausted.

Sleep. We needed it after such an emotionally and physically exhausting day.

The Eating Disorders Coalition, under the competent, capable and experienced leadership of  Al Guida and Eating Disorders Coalition Policy and Communications Director Kathleen MacDonald began Lobby Day early Wednesday morning with training for first timers. EDCLobby.JPG

Though I'd participated in the Lobby Day with F.E.A.S.T. previously and had a private lobby day with Kathleen MacDonald, I'd not experienced such a large group of Mothers and Others lobbying together before. It was incredibly powerful.

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Being that we are both from Minnesota, I was fortunate to get to lobby with hero and true pioneer, Kitty Westin. I am professionally and personally grateful to all that Kitty has done to change how insurance companies and our lawmakers see eating disorders. It was amazing to hear Kitty speak to the Legislative Aids...she's been doing this for so many years, has the protocol, intricacies and decorum down pat.  She knows just what to say, how to say it and her timing is impeccable. In each office as Kitty unfurled the poster of her daughter Anna and shared how Anna died 14 years ago due to lack of training of both eating disorders professionals and insurance company executives, my heart broke again...and the fire in my belly was reignited.  Fourteen years ago in Minnesota as Anna died from her eating disorder, my daughter Jessica's horrifying nightmare with eating disorders began...and we are still fighting for decent coverage and treatment of these most deadly of all mental illnesses.

Cong Brief CW.JPGCongBrief CM.JPG

Due to all of these mothers and others breaking the silence and the tireless work of the Eating Disorders Coalition, we are getting more and more lawmakers who are willing to sign onto the FREED Act.  With their help, we will educate our upcoming health care providers and policy makers so we won't be saying the same things in 14 more years.  Cong Brief JR.JPG

I know I'm not alone in my gratitude that this historic event finally took place.  Too many of us have experienced horrific results of treatment failure due to the lack of training given to health professionals.  

Please help us save our kids lives and spread the word. Sometimes speaking out is scary indeed. One mom at the March was told to stop airing her "dirty laundry"...would anyone ever say this to a family fighting for better cancer research  and treatments?

Many years ago when people said to me, "Becky, you're so open about your daughter's eating disorder!" I realized it was going to take families coming together and insisting on education and change to get us out of the dark ages with these biological brain illnesses. Thank you to all who worked collaboratively to help us take another step away from stigma.

Working on the social media committee for the March with New Moon Girls Founder, Nancy Gruver and Eating Disorders Coalition Policy Director Kathleen MacDonald was a delightful experience. These are people who get it done.

It was so encouraging to see so many families courageously stepping out and speaking up. I thank each of you for helping stop the stigma and shame.

Want to know how you can get involved next year? Check it out at www.marchagainsted.com




Becky Henry is an author, Speaker, Coach at Hope Network, LLC, Infinite Hope Publishing & Board member of F.E.A.S.T.-ed

Thursday, October 9, 2014

"Facts and Concerns About School Based BMI Screening, Surveillance and Reporting"


F.E.A.S.T. is thrilled to have collaborated with EDC (Eating Disorder Coalition), AED (Academy of Eating Disorders), BEDA (Binge Eating Disorder Association) and STRIPED (Strategic Training Initiative for the Prevention of Eating Disorders) on a new document:  "Facts and Concerns About School Based BMI Screening, Surveillance and Reporting"

This issue is of concern to families and we hope that this document can be of support and assistance.










Monday, October 6, 2014

Advocacy Mondays: The 'Dirty Laundry' Project

Over the weekend I spent some a lot of time looking at pictures and reading news from the March Against ED.  I also reread Laura's March speech and I, once again, was struck and humbled, as I always am, by the sheer power of parent advocacy. 

We need to harness this power and share it and CELEBRATE it......So, today we are going to do just that in an interview with parent advocate Celia Campos Robicheau.  Celia is one of the 'parents now' that Laura movingly described in her speech: 


Q:  Celia, what is the "Dirty Laundry Project"?

Celia:  I decided to use social media as my platform to raise awareness of the prevalence of eating disorders- what they are, and what needs to be done to bring these disorders to the front of the line. I received a positive response from most of my friends, some were reserved, some were indifferent, but then after the September 30th 2014 MOMS March in DC, I received a private message from a friend that said: "Celia, you should be ashamed to be airing out your family's dirty laundry all over Facebook. Have some class.”   I chose to respond to her on my public FB wall, though I did not share her name. This was my response to her:


 If advocating for my child's rights, my family's right and the rights of those whose voices are silent due to this illness is "airing the dirty laundry" then I want to run the biggest laundry in the world! I hope my laundry line is long enough to go around the world several times.  I hope and pray that you never find yourself fighting for your loved ones life, but if you ever do I have enough compassion and class for both of us to stand next to you. I am not even blocking you from my FB, if my "laundry" bugs you, you know what to do. Most love to you as you hopefully try to find your heart somewhere in your chest.

I then found a picture that said “The Dirty Laundry Project” and decided to make it my own personal tag line when advocating to end stigma and raise awareness . Since I started “airing my laundry” the response has been so positive, other parents have joined in 'airing their laundry' and so many people have said “You know my sister, my mother, my son, my best friend had/has an eating disorder and thank you for telling me don’t be ashamed, be pissed that you have been made to feel as though you should be.”

Q:  What motivates you as an advocate?      

A:  I am very vocal because I am mad as hell!

I am mad that I have two degrees in mental health and counselling and I didn’t see this coming because no where there did we talk about eating disorders beyond the DSM diagnosing criteria.

I am mad that a had a therapist for my daughter who didn’t pick up on the extreme healthy food obsession, and dismissed it as anxiety. However, she probably got as much ED training as I did.

I am mad that I had a psychiatrist who didn’t know that being obsessed with calorie counting, cooking up a storm (w/o eating) and a sudden desire to be a vegetarian are COMMON early ED symptoms.

I am mad at the medical professionals who turned us away because “she was not sick enough”

I am mad that when finally a diagnosis was given and “professional” care started, I was chastised for doing what a parent does, expecting to be 100% involved and to be an active member of the care team.

I am mad that doctors at the insurance company made decisions that affect my child’s life w/o ever laying their eyes on her; that they denied her the care that was recommended by the team who was working with her daily, who knew her and her needs.

I am mad that my child’s concerns while lying on a bed being tube fed was that all her friends would find out and that she would lose them, because they would think that she was crazy, and it was so “embarrassing”

I mad that every time a neighbor, a coworker, a friend has cancer, a death, something happens, the sunshine club sends cards, casseroles, meal trains, and supports each other. We got one card, one single card.

So I have decided that it is up to me and others like me to say ENOUGH, this is not tolerable or acceptable. And as I fight for my child’s life, I am fighting this faulty system that is letting millions down.


Q:  What Change Do You Hope to Have Through Your Advocacy? 

A:  As an advocate I want much more, I want more awareness - it's not a choice, it biological. It's a real illness. People die!

I want proper access - why are insurance "doctors" with 0 eating disorders experience making life-death decisions? Why are insurance allowed to say "not medically necessary" when the professionals treating your child say differently?

I want specialized training and education- many licensed psychiatrists don't ever receive ED education beyond diagnosing criteria, same thing goes for many therapists. Due to that, HUGE mistakes are made, signs are missed and opportunity for early detention and treatment doesn't occur.

In a very close future I hope no parent ever has to fight for access to treatment, ever has to suffer due to under qualified unknowable professionals, ever has to fight the insurance to provide coverage, ever has to worry about being blamed.  Research shows that there is a biological/genetic component to eating disorders, so I not only fight for my child’s life but potentially my grandchildren or their children. As a parent you wish for “better” for your children, a better education, a better job, a better life, well that includes a better health care system, a better insurance system and a society that is better informed regarding eating disorders and their devastating consequences.



Q:  Did you struggle with the stigma of mental health diagnosis when deciding to speak out?  

A:  I did struggle. I knew we would be judged and we would lose some friendships but, I found my children asking, 'what should we say? Can we tell?' and I thought, if she had cancer, diabetes or down syndrome, would we be asking this? No, of course not! But we do it because we as a society are not comfortable with mental illness, we still blame the parents, we look for answers in the the way kids are raised and we make judgments. I heard comments as “bring her to my house, we love to eat”,  “did she eat a lot of junk food?”   It felt that secrecy fed the shame and stigma. Sometimes imaginations are worse than reality.  This illness breeds in secrecy and shame.   So I put myself out there to show it happens, it needs to be addressed and I don’t care how uncomfortable others are.  



In the 1980's Aids sufferers were stigmatized, none wanted to treat it and them, some people said "it was god's punishment" etc, we rebelled, we advocated and today we look back and we know we know better.  In the 1990's/00's parents of autistic children were told "they (parents) caused it".  Today we look back and shake our heads.    There is no change without advocacy. We have a responsibility to our kids, their future kids and sufferers around the world to end stigma. An eating disorder is not a choice or vanity or a self-centered, egocentric "did it to yourself" illness. Parents don't cause it; trauma doesn't cause it. Things may trigger it, it may make it worse but doesn't cause it!



Q:  How did you find your way to advocacy?

A:  It is a long story but, sadly, a familiar one.  My 11 year old daughter was diagnosed with Anorexia Nervosa restrictive type in March of 2014, however, I knew something was wrong back in January. She become so health conscious, she wanted to be a vegetarian, she was losing weight, and she was always in a bad mood. We had multiple visits to the ER, and the pediatrician's office, I met with school officials (she had a therapist and a psychiatrist due to her anxiety disorder) and I kept bringing up all my concerns. I kept getting brushed aside though- the ER doctors said that her blood tests were within the low average of normal so there was nothing they could do; the pediatrician's office put a call to a RD who gave us an appointment for late May; the therapist said it was a symptom of her anxiety and that she would keep working with that; the psychiatrist kept saying “We wait and see”; when I told him that she was baking up a storm but didn’t eat any of it, his response was “that’s just great, she found an outlet for her anxiety!”; the school told me that they noticed she had lost weight but they thought she was growing. 

All the while, I called every mental health hospital in MA, I called every eating disorder program and the answers were  “Sorry, we don’t do eating disorders”, “sorry, we don’t service your daughter age”, “sorry, we don’t have any available beds."  In the first week of April we ended up at the ER twice, both time we were sent home, because “she was not sick enough”.   We returned to the emergency mental health room and sat for hours and hours only to be told “just go home and eat”.   I then took her back to our pediatrician. I broke down in tears, and told the doctor “my daughter is dying, she is killing herself and nobody is helping. I have done my part: I have a therapist, a psychiatrist, I have brought her to the ER, I have brought her to EMH, and to you, I need you guys to start helping me, because she is going to die and it will then be on all of you.”  

The pediatrician knew our family, he knew Rebecca.  He had been seeing her for years and had just examined her the august before for her school physical, and the child he was looking was a shell of the child he knew.  She was a bag of bones, with pale skin, sunken cheeks, dull eyes, with falling hair and wrinkles around her mouth were there was no fat anymore. He immediately made calls to an eating disorder centre and convinced them to evaluate her even though my daughter was 11 and the program started at 12. They told us to come by the following day to register but I didn’t wait, I went right from the pediatrician's office to the program.   They admitted her to the inpatient program the following day, it was Good Friday. By Easter, she had a Ng-tube to feed her. 

We were very present while she was in patient and that was not well received.  One of the nurses accused us of “calling too much" and asking too many questions.  We were told us that if we were dissatisfied maybe we should look to go somewhere else. We were there 43 days and I feel that Rebecca was was pushed out of the door due to the fact that the facility thought we were too intrusive.

Four days later Rebecca had to be hospitalized at another facility, were she remained until July when our insurance carrier felt that she was healthy enough to go home with IOP services. The hospital felt that she should have gone to residential at another facility and they advocated strongly for her to go there however the insurance denied us. My daughter came home eating only 5 foods and having to have anti anxiety medication 15 minutes prior to each meal.

Luckily, from that Good Friday to now we did all of the research- we read articles, followed the peer support forum Around the Dinner Table, contacted advocates, read books, asked questions, and we felt that we were prepared to do the work at home with hand picked providers, an ED doctor and Family Based Therapist at Boston Children's Hospital, a Nutritionist in West Boylston, and a Therapist in Worcester....we are all over the state and paying out of network fees but we feel we have found our team.

 My hope is that the next of generation of ED sufferers and parents don't have to fight for their child's life while fighting insurance, providers, stigma and access to care.  I don't want any one else to have our story.

Q:  5 things you would share with a family facing a new diagnosis?


A: 1.    Find peer support NOW – nobody knows better the hell you are going through than those who are there.  
The best  (and quickest) support I found was from parents who are going through this. Our themes of insurance nightmares, poor informed providers and daily frustrations are similar. Knowing that your are not alone, knowing what others tried, what has worked for them, what you can try- that has been the best and most valuable resource.

2.    Don’t be afraid to DEMAND care: this is a life threatening disorder, you have no time to wait for others to get on board.

3.    FOOD is medicine – to an eating disorder patient food is the equivalent to chemo for a cancer patient, or insulin to a diabetic. You do anything, everything to get that food in. WHATEVER it takes.

4.    “Embrace the Suck” – this sucks! this illness will suck the life as you know it. It will get better, but for now embrace it to your best ability and know that you are saving your child’s life.

5.    The only way out is through. Don’t waste your time finding a round about way.


Celia Campos Robicheau




 Celia Campos Robicheau 40, lives with her family in MA, USA. Originally from Spain she and her husband Chris have four kids, Victoria 13, Rebecca 12, Alex 8 and Arturo the poodle.





Friday, October 3, 2014

The Ghost of Parents Future

For the virtual marchers who were there in spirit but not in person, here is the full text of Laura Collins'*,  speech, delivered at the March against ED in Washington DC on Tuesday:

*For those who may be new to F.E.A.S.T, Laura Collins is the founder of the FEAST and the Around the Dinner Table Forum.  Laura has been a tireless voice for parents for the last decade and has 'risen the tide' by changing the world around eating disorders for families.  


The Ghost of Parents Future

September 30, 2014
Laura Collins Lyster-Mensh


"I am today the ghost of parents past.

Guilt-ridden, hidden, and contrite. We listened in terror but were afraid to speak. Ours was a March of worried deference. We heard that our beloved children were damaged irrevocably, that we had failed to protect them or even that we were the perpetrators of unspeakable and un-parental crimes. We went from seer to seer, promise to promise, cure to promised cure. We grabbed at hope, clawed at one another, always willing to do one more thing, one more promise.

We hid our names, covered our shame, accepted our penance. 

We were left out of the room, sent away from the table, set to tasks that kept us at an arm’s length and still, we were grateful. We were hopeful even without a plan. We were willing without a role. Until there was no more hope, often, or, exhausted we watched our children recover from a distance.

Over time, over MY short ten years down this rabbit hole, more parents awakened to a newer view. Sometimes invited and sometimes protesting, we were told we need not hide and should not sit back.

We learned about not only hope, but the specific hope that OUR role as parents makes possible. More of us began to join the treatment team, join advocacy, to take our place in supporting our loved ones toward recovery, to healing our families, to sharing information and science and support – openly, joyfully, with optimism and even, at times, humor.

This is an awakening that happened and inspired us from other parent circles. MADD, NAMI, autism circles, many areas of child health have been revolutionized by parents who took their place not just in the examining room but in board rooms and here, in Washington. 

Many years ago, when I was still just an individual mom on an unwelcomed mission to change how parents were viewed in eating disorder treatment, I had the opportunity to interview Dr. Thomas Insel, the head of the NIMH and arguably the top psychiatric expert in the world. He told me that eating disorder research and eating disorder treatment would not progress unless and until parents stood up and took their place to make it happen.

That was when I and others gathered the loose coalition of parents out there and created the first international organization of parents of eating disorder patients – many of you here were there and helped make that happen. F.E.A.S.T. was the result: a vibrant network of many thousands of families around the world acting in their homes and in their communities and countries to share evidence-based information and support.

I am the ghost of parents now.

Only a ghost, as I have retired from my ten years of rabble-rousing and turned over the advocacy to the next generation of parents. These parents use their real names. They get things done. They carry pictures of their loved ones with pride and admiration, with optimism and without pity. They expect and sometimes demand change and accountability. They carry the banner of science, not contrition. They are vocal, and their emotions are those of any parent faced with serious illness in a son or daughter. They take their place with other advocates, other movements, other marches, and they do so collaboratively and looking to the future and not the past.

I am the ghost of parents future.

Some will remember this day, here, where we are. Some will count it as the day that defined a new era. Some will mark it as the day they set a course – in their own home and in our nation’s home – for genuine and lasting change.


In the future, too, will be countless families who, because of what you do now and tomorrow in the halls of Congress, who will not remember this day. They will never know who had to show up and speak up to make sure that their loved one lives in a country where an eating disorder is recognized early, treated appropriately, and the family and community are supports and not frightened bystanders. They may have the luxury of never suffering the isolation, the confusion, the self-doubt, and the family-dissolving potential of an eating disorder diagnosis.

They may not ever know, but we do, we will, and we will not rest without that future assured."

Laura Collins