#ApproveSudol / #Parity4JP / #Care4K: When Will The Exception Become The Norm?

3/11/16: After seeing marked progress with their daughter at Oliver-Pyatt Facility, the Sudol's were forced to change insurance companies to Blue Shield of California. And, in early January, BlueShield decided 'Jenny's' treatment was no longer "medically necessary" -- even though Oliver-Pyatt sent over 90 pages written by doctors, staff, and caregivers documenting and explaining why and how Jenny is still at an extremely vulnerable position and requires the literal life-saving residential treatment at Oliver-Pyatt. You can read Renee Sudol's letter in full here and support their family with the hashtag #ApproveSudol.

(As of 3/14/16, BlueShield has claimed they have attempted to reach the Sudols by phone, which the Sudols have denied. In other words, BlueShield's actions continue to imply priority for their bottom dollar instead of the life of a 15 year-old girl, not to mention the millions like her who not only have had the courage to seek out treatment, but also fight daily to stay alive.)

4/5/16: After months of ignoring the Sudol's efforts, BlueShield finally got in touch with them only to uphold the previous denial by a BS doctor (who is apparently untrained and not licensed in treating a mental illness as complex as an eating disorder). The Sudols continue to demand proper action (aka, you know, the law (read about The Mental Health Parity and Addiction Equity Act here)), Jenny continues to fight against the deadliest of mental illnesses, and Blueshield continues to put money above the value of a young girl's life.

***Current update 5/5/16:*** BlueShield continues to deny coverage while at least two other families (#Parity4JP and #Care4K) have stepped forward to speak of the insurance company's unwillingness to a) follow the law and b) do the right thing and support their children in treatment for an eating disorder. Instead, these families, friends, and other supporters now have to take to the streets in order to save their childrens' lives.

I'm running out of things to say at this point about how completely and morally despicable this is. There are hundreds of documents from doctors who are actually knowledgeable about, and trained in, eating disorders (can you say that of yours, BlueShield?) supporting the need for these people to receive care. And yet, this picture does well to sum up BlueShield's apathetic and deplorable ways.

However, it also poignantly sums up our own promises:

We. Will. Not. Give. Up.

(Photos borrowed from Twitter: @doreens15)

 

ORIGINAL BLOG POST FROM DECEMBER 26, 2015:

Something awesome happened on the internet just recently; under the hashtag #ApproveSudol, activists drew attention from Aetna, a Fortune 100 company, who had previously denied treatment for a 15 year-old girl fighting an eating disorder). According to @IEDaction, over 34k messages were sent out on Twitter using the hashtag and, after garnering recognition from Aetna's CEO, Sudol was approved for the treatment she needs.

Now, I do not want to take anything away from this -- not from the hundreds of people pulling together for a common cause, not from the bravery and strength of 'Jenny' Sudol, nor the love and dedication of her family. But I feel I must point out that the exact same day I cried with happiness for Jenny and her family I later learned an acquaintance of mine had been denied treatment by her insurance.

In this day and age, I am the kind of person who takes any bit of good she can find and runs with it, but I just couldn't ignore that it took 34,000 messages and (I'm sure) hundreds of other phone calls, letters, etc., in order for get a child to get lifesaving treatment. Especially considering eating disorders have been shown to be the deadliest mental illness(1) – with anorexia having six times the increased risk of death (four times the risk of major depression), bulimia carrying 1.7 deaths per 1000 people, and ENDOS (eating disorder not otherwise specified) carrying 3.3 deaths per 1000(2). In other words, the "mortality rate associated with anorexia nervosa is 12 times higher than the death rate of all causes of death for females 12 - 24 years old"(3). Even with this, one must keep in mind the previous statistics are based only on deaths actually reported as caused by eating disorders; there are far more that say death was only due to heart failure, organ failure, suicide, malnutrition, etc(4), despite these complications having been a direct result of an eating disorder.

Additionally, the risk of death from an eating disorder increases dramatically the longer it takes to be diagnosed and treated later in life. Which is one of many reasons why early intervention and proper treatment is imperative when dealing with eating disorders. Another being they are biopsychosocial illnesses akin to addictions – not a condition done for “attention”, “vanity”, or whatever other misconstrued labels have been applied to them. Just like alcoholism, drug addiction, etc. – eating disorders are multifaceted illnesses that derive from, and attack, many different levels; they need extensive and appropriate treatment to beat and yet, with approximately 11 million Americans suffering from eating disorders, only about one in 10 receive the treatment they need(5).

Needless to say, I could write a novel length rant on insurance companies and their completely messed up views on money vs. people’s well-being, but a number of people have already addressed this (i.e. An Open Letter to Insurance Companies) a lot better, and with fewer expletives, than I ever could. And though I would love it if my thoughts on preventive treatment could single-handedly change the ways of money grubbing insurance companies, we will just have to keep advocating like we have been. Because, as we all know, #ApproveSudol cannot remain the exception -- it must become the norm.

So, while many of us have had our own experiences of seeking treatment and battling insurance companies (a brief description of mine can be found here), I -- like so many others -- ultimately want to stop adding to the list of names who did not receive adequate treatment (like Alana Goldsmith), or proper diagnoses (like Lacey Smarr (article contains weight), or were refused treatment and/or support for its high cost (like Katherine West and Anna Westin). 

Instead, I want to create a new list of those given a chance they so rightfully deserve -- just like Alana, Lacey, Katherine and Anna deserved -- starting with 'Jenny' Sudol.

 

  1. American Journal of Psychiatry, Vol. 152 (7), July 1995, p. 1073-1074, Sullivan, Patrick F.
  2. DeNoon, Daniel J. "Deadliest Phsychiatric Disorder." WebMD. WebMD, 12 July 2011. 23 Dec 2015. www.webmd.com/mental-health/eating-disorders/anorexia-nervosa/news/20110711/deadliest-psychiatric-disorder-anorexia
  3. "Eating Disorder Statistics". South Carolina Department of Mental Health. n.p., n.d. 23 Dec 2015. www.state.sc.us/dmh/anorexia/statistics.htm
  4. "Eating Disorder Statistics". ANAD. n.p., n.d. 23 Dec 2015 www.anad.org/get-information/about-eating-disorders/eating-disorders-statistics
  5. Eldred, Sheila Mulrooney. "Eating Disorder Patients Fight Double Battle: Their Disorder and Insurance Firms." Health. Minnesota Post. 17 Feb 2012. 23 Dec 2015. www.minnpost.com/health/2012/02/eating-disorder-patients-fight-double-battle-their-disorder-and-insurance-firms

 

Helpful Links:

https://www.nationaleatingdisorders.org/get-facts-eating-disorders

http://www.nationaleatingdisorders.org/insurance-resources

http://eatingdisorderscoalition.blogspot.com/2015/06/annaslaw-by-kitty-westin.html

http://thehill.com/blogs/congress-blog/healthcare/247438-why-the-anna-westin-act-of-2015-matters

http://www.wday.com/news/3890325-minn-mother-aims-help-patients-eating-disorders-across-country