“Jenny” is a pseudonym to protect her privacy.
Jenny’s thirteenth birthday was wonderful. At 13, she loved Japanese food, and going to a hibachi grill with her family and friends from her dance class was a great time. Everyone laughed, told stories and enjoyed life the way happy “tweens” are expected to. Like many with the temperament that indicates a genetic vulnerability to anorexia, she excelled academically and outside of school. She loved dance and was on three competitive dance teams and team captain of her hip-hop team. She also loved art and played the violin. Jenny has a passion for animals and volunteered at a cat shelter each summer. She loved spending time with her family and her little brother. Jenny was a happy, “normal” young girl with a bright future and dreams of being a Zumba Instructor and college.
Jenny’s thirteenth birthday would be her last “happy birthday.”
Jenny’s fourteenth birthday was spent in-patient at Brandywine Hospital, the first of several ineffective treatment stays. She was being treated for Anorexia Nervosa after being diagnosed in November 2013. The journey since then has been both traumatic and tragic as her family, who has health insurance, has helped her battle a disease with the highest mortality rate of any psychiatric disorder—10% by some estimates. They have taken their daughter to several in-network facilities and now her outpatient team advises something radically different.
Having played by Aetna’s rules for two years as their daughter’s health has continued to decline, they must now battle Aetna in trying to get Jenny the best treatment in order to save her life. Oliver Pyatt, a renowned treatment facility which employs 24/7 recovery coaches across several years and focuses on integrating patient’s back into “normal” life before releasing them, is the best fit for Jenny’s needs according to her treatment team and parents. They are willing to write a single case agreement with Aetna, however Aetna is refusing. Aetna wants to send them back to the same treatment center that was, by its own admission, not a agood fit for Jenny’s needs.
Members of the outpatient team are directly recommending Oliver Pyatt as the facility best equipped to deal with Jenny’s anorexia and have written letters to the insurer to support their recommendation. One clinician says:
“The Sudol family has followed Aetna’s allowances for two years. They’ve sent their ill child repeatedly to where Aetna permitted. Some of those facilities were excellent and another patient may have succeeded, but Jenny did not. She was too ill and released too soon. This is an extremely difficult and resistant illness and we need to get Jenny off the revolving door treatment cycle. She deserves the treatment that will offer the best opportunity for recovery and which is based on her specific needs. More of the same only keeps her ill longer, diminishes hope and encourages Anorexia to make itself more at home in this child’s brain.”
Jenny is 15 years old—It is vitally important to intervene — and continue to intervene until there is success — aggressively in an adolescent with anorexia as once entrenched the disorder is very difficult to treat.
If there is a chance this new treatment center will work better the insurance company needs to cover it and her team says she needs this center—either way she will be in treatment, the question is where will she have the best opportunity to heal?
Today, Jenny’s fate lies in the hands of an insurance company “expert” who is not only not an adolescent-board certified psychiatrist, but by his own internet presence claims special knowledge in several areas, but not eating disorders. An expert, third-party evaluation, as her parents are asking for, is a reasonable request.
What is happening here is like an insurance company telling someone whose first three blood pressure pills didn’t do their job to back and try #1 again instead of authorizing the use of drug #4 which is not routinely covered, but is frequently authorized; these special authorizations are common. One cannot help but see stigma playing a role in the denial of expanded services for those with mental illnesses.
Readers, please join the Sudol family in imploring Aetna, on Twitter and Facebook, to do the right thing by sharing this piece with the hashtag #ApproveSudol attached. Jenny’s life is on the line and her insurer needs to join her parents in doing everything possible to save her life, health and future.
*update 12/18/2015 I have been advised by Jenny’s mom that Aetna has reconsidered their position and will in fact do a single case-agreement to allow Jenny to get the treatment she needs. Advocacy works!