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My 8-Year-Old Has a Chronic Illness, and Fighting with My Insurance Company Has Become My Life

Image Source: Eden Strong
Image Source: Eden Strong

“Our review has determined that the following service(s) are NOT medically appropriate based on the following principal reason(s): The request with submitted information for the pediatric wheelchair, has been denied as not medical necessary as the patient is not bed or chair confined.”

So goes the latest letter from my insurance company, intended to inform me that although my 8-year-old daughter is not confined to her bed, she is “not consistently a functional walker,” which is what her geneticist said when he wrote the prescription for the wheelchair in the first place. A wheelchair that now, with a price tag of $2,800, my daughter will not be getting, because some person sitting in their cubicle at the insurance office — someone who is not a doctor — decided to play doctor and alter her course of treatment.

I knew something was wrong with my daughter from almost the minute she was born. A full-term baby, she didn’t come into the world screaming, but rather she came quickly, and without sound. A shade of purple so deep, you would have thought she was suffocating, though surprisingly, she was breathing just fine. But then she was hospitalized at just 11 days old, spent some time in the ICU at 4 months old, and was plagued by a series of physical delays.

She was eventually diagnosed with a rare form of Ehlers-Danlos Syndrome, which is a connective tissue disorder that affects everything from her joints to her digestive system, heart, and even the way that she does (or does not) regulate her body temperature. Currently, we are dealing with some severe muscle weakness and dyspraxia that causes significant pain in her legs, and makes her uncoordinated to the point of being a serious fall risk.

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She fell so many times at school last year (once even requiring her to be rushed to the hospital with a head injury), that the school had me start bringing her through a side entrance so she wouldn’t have to walk that far from the car to the door.

Don’t get me wrong, when she has good days, she has GREAT days; but when she has bad days or she needs to walk for longer than 10 minutes at a time, even the braces that extend from her toes to her knees can’t help ward off the pain that leaves her in tears. And it breaks my heart, because I know that when we are at the zoo or make an attempt to visit an amusement park, and I see her crying and begging us to take her back to the car, that she really is in pain.

But now, at 8 years old and finally tipping the scales at 40 pounds, she has outgrown a regular stroller, and I can’t seem to convince my insurance company that even though my child is not “bed bound,” she is not a “functional walker.” And because of that, my transport options for her are slim to none unless I am able to foot the bill myself.

This is just so wrong, on so many levels — and yet it happens so often, and in much more serious ways.

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The controversy over insurance execs making life-or-death decisions isn’t exactly new: It became a media sensation back in 2007 when Nataline Sarkisyan, a 17-year-old in liver failure, was denied coverage for a liver transplant by her insurance company, Cigna Healthcare. While both her parents and the hospital fought the insurance denial, Sarkisyan missed out on two available livers because her family could not afford the $450,000+ procedure. When the media became aware of the story, and put pressure on Cigna Healthcare to cover the costs, the denial was ultimately reversed and the company did agree to pay for the procedure — but by then it was too late, and Sarkisyan died just several hours later.

And unfortunately, it’s not just the chronically ill that suffer the same fate. In 2012, Marissett Tolentino was on vacation with her daughter Isabella in the Dominican Republic when the 6-year-old developed appendicitis. Not wanting her daughter to go through surgery in the sub-par local hospital, her pediatrician decided that Isabella needed to be flown back to the U.S. on a medical jet, which was a covered expense per her insurance policy. But her insurance company took so long to approve the claim that Isabella ended up needing to have the emergency surgery in the Dominican Republic, where a series of blatant and outrageous medical mistakes led to her death.

Thankfully, laws are beginning to pass that will protect patients from being denied lifesaving treatments, like House Bill 1515, which requires insurance companies to cover the cost of Proton Therapy cancer treatment, even if it is the more expensive option in available treatments. The bill was written to protect patient health by assuring that insurance companies would not be able to deny doctor recommended treatments just to save money. Sadly though, despite the law being in place, many insurance companies are still continuing to deny coverage for the treatment, and patients who are already fighting for their lives are now entangled in court battles that are further delaying the start of their treatment, and are potentially worsening their outcome for survival.

Like I said, the whole thing makes me sick!

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When I look at my daughter, I don’t know what the future holds. The type of Ehlers-Danlos Syndrome that my daughter has is rare, and currently does not have a lot of research being done on it, but we do know that it is pretty much guaranteed to progress. As a mother, I’m prepared to do anything and everything that I need to do in order to give her the best chances possible at a long and healthy life. But when I started this journey and promised to fight for her, I never thought that my biggest battle would be against people with the least amount of knowledge in her medical condition.

Despite every grim prognosis and everything her doctors told me may happen, I never thought that an insurance company would be the one to determine the quality of her life.

Article Posted 11 months Ago

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