Thursday, September 29, 2016

Extraordinary Measures to Pay for Eating Disorder Treatment

Re-posted from Kantor & Kantor Eating Disorder Law Blog: http://www.kantorlaw.net/Eating_Disorder_Blog.aspx

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Annie Seal is a dedicated advocate to insurance reform and eating disorder recovery, although this hasn’t always been her calling.  Annie’s daughter recovered from an eating disorder, but not without a battle from their insurance company.  This is her story, and the story of countless others.

During her daughter’s four month treatment, she was denied insurance coverage three times.   This inconsistency and lapse of treatment led to a serious relapse and a need for a higher level of treatment, twice.   The appropriate level of treatment needed was much higher after her daughter’s premature discharge from treatment, simply because the insurance company terminated coverage.  Annie wondered why the central issue her daughter was facing, during recovery from a life threatening eating disorder, was lack of insurance coverage.

Annie began to watch as other parents went to extraordinary measures to find money to pay for treatment.  They would mortgage their home or use retirement funds because insurance would not pay for this life-saving treatment for their child.  She also watched parents try to stretch coverage: if they had 5 days left of treatment, they would bring their child for half days 3 days a week, which would give them 4 more weeks of some coverage.  Obtaining treatment for this serious illness became an intricate game, intensifying an already exasperating situation.

While supporting her daughter’s recovery was incredibly complicated and stressful, trying to make their insurance company pay was even worse.  All around her, she watched those suffering from eating disorders deteriorate from insufficient treatment.  Annie recalls, “I remember thinking, why are we focusing on insurance? Why can’t we focus on getting our children well, or how to take care of our other children or each other? “

This infuriating barrier to treatment was deeply offensive to Annie, her daughter’s recovery journey, and to so many other families.  And so began Annie’s legislative journey of what felt like an impossible task:

  • She decided to take action and met with her local State Representative who had filed  eating disorders insurance reform legislation that same year.
  • She found a sympathetic Senator who filed the companion bill in the Senate.
  • Five years later, she continues go to the state Capitol once a week to work insurance reform legislation.
  • Working with dedicated, compassionate legislators, she was instrumental in getting the MO Eating Disorders Council passed into law.  This Council is charged with studying the many issues surrounding eating disorders quality and access of treatment, education, and awareness.  She is now the Chairman of the MO Eating Disorders Council and VP of the board for the MO Eating Disorders Association.
  • She is a volunteer for the NEDA STAR program, which provides support in outreach and Advocacy Day awareness.
  • She conducted state-wide focus groups to assess the level and quality of coverage and is in the process of fielding a state-wide quantitative survey to further assess eating disorders issues.

See http://www.connectmidmissouri.com/news/story.aspx?id=877683#.UVW_2Vd33cs

 

With a profound motivation to make change, Annie continues to tirelessly advocate for insurance reform on behalf of all families who will face this gross injustice. “I am not paid.” Annie stated.  “I am a citizen advocate who has met too many parents who have lost their child to stop advocating now. I believe the lack of insurance coverage is discrimination and that the denial of coverage is criminal.”  Annie voices much recognition and appreciation to the well-respected, excellent bill sponsors Representative Rick Stream from Kirkwood, MO and Senator David Pearce from Warrensburg, MO as they file bills year after year.  These two legislators work diligently on behalf of all who are suffering.

You might wonder how is it possible that insurance companies continue to get away with denying treatment for eating disorders, while it is understood that eating disorders are the deadliest of all mental illnesses.  One, families are often so overwhelmed and exhausted from the recovery process and fighting with their insurance company that they do not fight back. Two, the claim administrators making life-altering decisions are usually not eating disorder experts and have no formal training in this field. Three, insurance coverage for eating disorder treatment is expensive, and denials save insurers money.  Insurance companies get away with this when those who have suffered, and their families, remain silent.

It is incredibly important that we not let the shame, stigma, and overwhelming grief that accompanies this disorder impede the awareness, detection, prevention, and treatment of this illness.  The work that Annie has done in this field has transformed Missouri law; bringing focus, attention, and education around eating disorders.

When Annie first started her advocacy journey, eating disorders had never been discussed at the Capitol, and the understanding that eating disorders are serious, complex illnesses was minimal.  Legislators would pat their bellies and say “Maybe I should have an eating disorder.”  The oblivion and lack of knowledge was clear.  Thankfully, the awareness and understanding of eating disorders has grown, and many legislators have become educated and compassionate about this issue.   All are shocked by the incidence and mortality rate associated with eating disorders.  As eating disorder awareness has expanded, people are much more likely to know someone who has been affected.  However, much work remains to be done in educating medical staff, schools, families, and insurance companies on this deadly, stigmatized illness.

If you have been denied treatment for an eating disorder by your insurance company, do not give up! It is this silence that allows insurance companies to perpetuate this cruel discrimination.  For more information on eating disorders and insurance issues, contact Kantor & Kantor at (800) 446-7529 for a no-cost consultation or visit www.kantorlaw.net.  WE CAN HELP.

 

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