A family frustrated by Aetna Insurance is going public with its story in what is becoming a growing trend — turning for support, outrage and help through social media.
In November 2013, “Jenny” was diagnosed with Anorexia Nervosa, a serious, potentially life-threatening eating disorder characterized by self-starvation and excessive weight loss. The family’s insurance company, Aetna, agreed to pay for treatment but only at facilities that were “in-network.” Two years later, the now fifteen year-old’s condition has worsen much to the alarm of her parents.
The family decided to consult with specialists outside Aetna’s approved network and soon became convinced that Oliver Pyatt, a facility in South Miami that specializes in treating anorexia nervosa, would be a better fit for their daughter. One of the outside clinicians who examined Jenny sent a letter to Aetna urging it to approve the family’s request to enroll Jenny at Oliver Pyatt.
“The 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.”
The family felt that strong recommendation — and the fact that two years of treatment at five Aetna approved centers had failed — would sway the insurance company, especially after they discovered the Aetna official overseeing Jenny’s case was not a adolescent psychiatrist and had no specialized training in eating disorders.
Aetna was unmoved. It said it would pay for treatment, but only if Jenny returned to the same “in network” centers where she had failed to get help. The family has asked Aetna to bring in an expert, third-party evaluator, to review their daughter’s case but has been told that such a review could take months. Meanwhile, Jenny’s health continues to be at risk.
After two years of failure, why would returning for a sixth time to an in network residential treatment center help? the family asked. “Jenny’s life is on the line,” a spokesman for the family wrote in an Internet appeal, “and her insurer needs to join her parents in doing everything possible to save her life, health and future.”
According to the National Organization of Anorexia Nervosa and Associated Disorders, eating disorders have the highest mortality rate of any mental disorder, although mortality rates reported can vary considerably between studies and sources. Part of the reason why there is a large variance in the reported number of deaths caused by eating disorders is because those who suffer from an eating disorder may ultimately die of heart failure, organ failure, malnutrition or suicide. Often, the medical complications of death are reported instead of the eating disorder that compromised a person’s health.
Mental Health Advocate Brian Cuban has taken up Jenny’s case. (By coincidence, Jenny’s family happens to be related to a close friend of mine.) Writing on PsychCentral, Brian urged readers to send appeals to Aetna under the hashtag #ApproveSudol.
At age 13, “Jenny was a happy, ‘normal’ young girl with a bright future and dreams of being a Zumba instructor and college,” Brian wrote. A year later, she was in the hospital battling a disease that was intent on killing her. That fight still is going on.
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 often don’t fit nicely into insurance company’s guidelines.
At a Kennedy Forum held in Chicago in November, Kennedy said that his organization wanted to hear stories from individuals who had trouble getting treatment for their mental disorders because of insurance issues. It is how he and his group 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 on my Facebook page.
After two years of failures at five residential centers, helping the parents find Jenny a treatment center that will produce better outcomes would seem to be — not only the right thing to do to help ease suffering — but the financially smart thing to do.
Aetna are you listening?
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