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Military health insurance officials are thinking twice about denying weight-loss surgery to a 12-year-old Texas girl with a rare medical condition that has left her morbidly obese.
Meanwhile, supporters of Alexis Shapiro of Cibolo, Texas, have donated at least $78,000 to pay for the potentially life-saving surgery — money that her mother said will go to help other ill children if the government comes through.
“We have been hearing from other people who were in our situation,” said Jenny Shapiro. “I hope people are happy with what we can do with it.”
Officials with TRICARE, which provides insurance for Alexis’ father, Ian Shapiro, an Air Force veteran, said Thursday that they’re reviewing the situation. Alexis has gained more than 140 pounds in the two years since brain surgery triggered hypothalamic obesity and hyperphagia, conditions that pack on weight but leave the child feeling like she’s starving.
“Due to the unique nature of this particular disease, the Defense Health Agency is reviewing the request under TRICARE’s Rare Disease Policy,” officials said in an email to NBC News. “We expect a final decision in a matter of days.”
Jenny Shapiro said she’s waiting anxiously for the decision. She said a local TRICARE insurance representative had shown her a letter approving the surgery, but she didn’t know if that was official.
“How can they say they’re going to review it when we have it in writing that they’ve approved it?” she said.
Under the TRICARE policy, coverage of treatment for rare diseases may be considered on a case-by-case basis. If a review indicates that benefit is safe and effective, it may be approved, the policy says.
A rare disease is any disease or condition that affects fewer than 200,000 people in the United States. Alexis’ problem started with a craniopharyngioma, a rare kind of benign brain tumor that grows near the pituitary gland and affects at most 1 in a million children per year.
Surgery to remove the tumor in 2011 damaged Alexis’ hypothalamus and pituitary gland, organs that help govern energy balance, appetite and weight. About half of children with those brain tumors develop problems with excessive eating and significant obesity. But it left her with a disease also referred to as panhypopituitarism, which refers to the lack or complete absence of pituitary hormones.
Since then, Alexis's weight has shot up to 198 pounds on her 4-foot-7 frame and she is gaining about two pounds every week. Doctors say that gastric bypass weight loss surgery will help stop the rise, help her lose perhaps 20 percent to 30 percent of her body mass — and curb the cravings that have forced her parents to padlock the kitchen cupboards.
TRICARE initially denied the request for gastric bypass surgery because there wasn’t enough detail on the application, said Austin Camacho, a spokesman.
“The reason for this surgery request was simply ‘morbid obesity.’ There was no information indicating that this patient had a rare disease (panhypopituitarism),” he said. “If the family had initiated the appeal process, as informed in the denial letter, all this would have come to light right away.”
The request was submitted by Dr. Thomas Inge, a pediatric obesity expert with the Cincinnati Children’s Hospital Medical Center, who is overseeing Alexis’ care. He and Jenny Shapiro said they were worried that an appeal would take too long for a girl whose accelerating weight gain is causing dangerous health problems, including type-2 diabetes.
Well-wishers donated far more than the $50,000 needed for the initial surgery, flooding an online medical fundraising account with $78,000 after NBC News first reported the story Saturday.
“Oh my gosh!!!!!” Jenny Shapiro wrote on the site. “You have all shown her that dreams can come true and that the rude comments out in public can be ignored because she has so many people supporting her and rooting for her. Thank you oh so very much!”
If TRICARE approves coverage, the money will be used to pay for other expenses such as travel and lodging when the family of five travels from Texas to Ohio for the surgery, which could be set as early as mid-February.
Anything left would go to other children suffering from brain tumors and other disorders, she added.
“It would help other people,” Jenny Shapiro said. “Alexis has always wanted to help.”
JoNel Aleccia is a senior health reporter with NBC News. Reach her on Twitter at @JoNel_Aleccia or send her an email.