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.

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!!

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

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

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

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

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

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

The Four (or more?) Kingdoms of ED

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

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

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

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