(3-4-16) Last year, I posted a blog about “Jenny,” a fifteen-year-old girl diagnosed with Anorexia Nervosa whose parents were waging a social media campaign to persuade Aetna Insurance to pay for her treatment in a residential center that was out-of-network. Jenny had already gone through in-network treatment programs four times during a two year period without success. Twelve hours after that blog was posted, Aetna agreed to approve coverage of Jenny’s treatment at Oliver-Pyatt Center, a facility in South Miami that specializes in treatment eating disorders. Sadly, I received this email from Jenny’s parents this week.)
Dear Pete,
After your blog last year and 34,000 tweets, Aetna agreed to cover our daughter’s treatment at Oliver–Pyatt. I never thought I would have to write for help again, but here it goes. In January, my husband’s insurance changed to Blue Shield of California. We had no choice but to switch, but we thought we were in the clear because Oliver–Pyatt is in their network. Just to make sure there were no bumps, we chose the most comprehensive Blue Shield plan available to us. 
Obviously, we didn’t want any interruption, because for the first time since the summer of 2014 Jenny has been making real progress. She is even now verbalizing that she wants to recover! Before Oliver-Pyatt, she was “white knuckling” it — eating and going through the motions to appease her family and treatment team — her illness quietly waiting for the next opportunity to restrict, over-exercise, or self-harm herself.
At Oliver-Pyatt, doctors have worked to normalize the eating experience for her, as opposed to re-enforcing it as purely a mechanism for weight gain. Thanks to that approach, she has on occasion said that she actually enjoys the flavor of some foods! Eating is still very much a struggle, but she’s learning to discern likes and dislikes based on taste as opposed to caloric or fat content.
Recently during her residential treatment, Jenny is beginning to smile more and even laugh occasionally. Her witty, dry sense of humor is returning. She is starting to want to do normal teenage things again: get a summer job, hang out with her childhood friends (not other girls who have eating disorders), and have a “sweet 16” party. She just earned her Instagram account back after 10 months abstinence. She’s making sure to follow only those people she actually knows and likes. She’s made the choice to not follow any friends she’s made in the eating disorder world, for fear of being triggered back into relapse.
Dance, before the eating disorder, was her passion. She began in kindergarten but, when she turned 13, dancing for pleasure turned into dancing to burn calories as her destructive obsession took power over her brain. Thankfully, she now wants to dance again for fun, knowing that instead of 5 hours of weekly classes she’ll have to start off slow with just one weekly class.
But these changes did not happen overnight. We have learned that it can take a long time for a malnourished brain to heal.
Which brings me to the point of this email.
On January 14, 2016 Blue Shield of California determined that residential treatment was no longer “medically necessary.” They announced that they would pay for 13 days and then expected her to return home and enter a partial hospitalization program. We were stunned. Jenny still has to have someone with her during her meals. She still is having rigid, obsessive thoughts. Her medicine is still being adjusted. In her present condition, she is still unable to eat a meal with us, her parents, who would be in charge of her aftercare.
I know, because we’ve done this four times before, if she comes home now she will eventually go on a hunger strike and we will end up again in the ER. Then she will go inpatient and start the whole process all over again. Recovery from an eating disorder can take time, and if not allowed adequate time at the proper level of care, eating disorder thoughts can become re-entrenched and relapse can quickly occur. This is what has happened the last four times that she left a treatment facility after insurance declared it was no longer “medically necessary”.
Once it took as long as three months before a relapse, once as short as two weeks, but it happened each time when we allowed insurance to dictate her treatment. Every time she was discharged it was against the recommendation of her attending doctors and therapists, with often a prognosis of “poor” at the time of discharge. This time we are determined to not have her discharged until the she actually completes the program, until her treatment team concludes she is ready.
Despite our pleas, Blue Shield has informed us that it wants her out of Oliver-Pyatt. My husband and I are now liable for payment for her treatment which we do not have nearly the means to independently fund.
This Monday (2-28), we sent a certified letter to Blue Shield in one last ditch effort. Her caregivers and doctors at Oliver-Pyatt have mailed over 90 pages of documentation explaining why residential treatment is necessary. I hate to ask you and your readers for support, but we feel we have no choice but to launch another social media and Twitter campaign. We want Blue Shield of California to provide continuity of care at the level her expert team deems necessary.
Not only is this the right thing to do for Jenny, it is the cost-effective solution for the insurer long-term. This treatment merry-go-round of premature release from treatment benefits no one, and will continue if she cannot stay at Oliver-Pyatt to complete her treatment. Chemotherapy is used until cancer is in remission, not simply until it’s a little better. The same must be true when treating a mental illness.
If your readers would like to help our daughter, please follow me on Twitter at SudolRenee and #ApproveSudol.
Thank you so much
Jenny’s mother.
Many of us who deal with mental illness have tangled with insurance companies. The Mental Health Parity and Addiction Equity Act of 2008 pushed through Congress by former Rep. Patrick Kennedy, requires insurance companies to treat mental health and addictions the same way physical health problems are covered. But the devil always is in the details and mental health issues — that often can prove costly for companies — often lead to disagreements such as this one about what is best for Jenny.
Kennedy has said that his organization wants to hear stories from individuals who have had trouble getting treatment for their mental disorders because of insurance issues. It is how he and the Kennedy Forum can monitor compliance. This does NOT mean that Kennedy’s group will investigate or advocate for anyone fighting with an insurance company. It simply is a way for Kennedy to judge if insurance companies are complying with the parity law. Again, don’t expect them to fight your battle but if you want to report shenanigans by an insurance company then tell them about the problem. You can also share your story in the comment section on my Facebook page at Pete Earley Facebook.
Jenny’s mom put it best: “Chemotherapy is used until cancer is in remission, not simply until it’s a little better…”
Why do we separate mental illnesses from physical ones?
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