Weight Loss Surgery Denied By Insurer To Girl With Rare Illness

Jonathan Vankin - Author
By

Aug. 22 2014, Updated 5:18 p.m. ET

Weight loss is usually something that most of us treat as optional. Sure, we could all stand to lose a few pounds, but sometimes it just isn’t worth the effort.

For one 12-year-old girl in Texas, however, weight loss surgery — generally the last resort of obese people who’ve tried every diet — looks like the only step that can save her life, but her insurance company refuses to pay for it.

The operation costs $50,000. The story of Alexis Shapiro is both heartbreaking and maddening. But there may be a happy ending.

Just two years ago, Alexis was a normal young schoolgirl with cute dimples and bright red hair who loved riding her scooter with her younger brother and sister, an NBC News feature on Alexis recounts.

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But then, doctors found something wrong in her brain. It was a craniopharyngioma, which is the medical term for a benign tumor that sits near the pituitary gland. About 1 million children every year develop such tumors, which can be removed with nerve-wracking but relatively safe brain surgery.

The operation was a success. However, it had a side effect that afflicts about half of the kids who undergo the same procedure — a minor amount of damage to the hypothalamus, a small region near the bottom of the brain that controls, among other functions of the human nervous system, feelings of hunger.

Now Alexis feels like she is starving all the time. The condition causes her to eat excessively and compulsively. Alexis, just 4’7″, now weighs almost 200 pounds and her weight keeps going up, despite weight loss regimens such as holding her to a calorie-restricted diet.

She now suffers from Type-2 diabetes and was recently hospitalized for a kidney infection

Doctors say that gastric bypass surgery is the only way to make sure that she achieves the required weight loss, allowing her to survive and lead something like a normal life. Her insurance company, TRICARE, says it has rules that patients under 18 cannot get bypass surgery. And rules are rules.

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“I think it is disappointing that they cannot see the facts of this case,” said Dr. Thomas H. Inge, a pediatric obesity expert at Cincinnati Children’s Hospital Medical Center, who is now Alexis’s physician. “There is no evidence that doing nothing would be in this child’s best interests.”

The insurance company won’t budge. But now it looks like there’s another way. Alexis’s mother Jennifer Shapiro started a crowdfunding campaign on the site GoFundMe.com, attempting to raise the $50,000 needed for the weight loss surgery, according to WebPro News.

On Sunday morning, the site surpassed its goal, with a total of $52,061 raised.

“Oh my!!! I can’t believe this!” The joyful mom wrote on the site. “We are so grateful. I am going to contact the hospital on Monday. To find out if this will cover all the costs. Thank you to everyone who cares. Also I will set up a PO box for cards and letters. Alexis would love to get mail.”

Now Alexis may finally be on the road to the weight loss that can bring her childhood back.

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