Two parents in Texas have been, for the last three months, forced to watch their 12-year-old daughter suffer from a rare condition that makes her gain massive amounts of weight even as her body thinks it's starving, which would be a horrifying and exasperating thing to witness all its own even without a little extra bureaucratic twist from the family's healthcare provider: the girl has been denied the gastric bypass surgery that can help her because she's too young.
The girl, Alexis Shapiro, is four-foot-seven and already weighs 198 pounds. According to NBC News, she has, over the last three months, been hospitalized for a kidney infection and developed Type 2 diabetes, and that was after Alexis had surgery to remove a craniopharyngioma, a rare kind of benign brain tumor that grows near the pituitary gland, two years ago. Though the tumor was removed successfully, damage to her hypothalamus (the organ that helps govern weight and appetite) caused her to develop hypothalamic obesity. Even on a restricted diet of 900 to 1,400 calories and plenty of daily exercise, Alexis rapidly began gaining weight and developed a relentless appetite.
The ceiling for Alexis's weight gain is alarmingly high — about 400 pounds, according to an expert in pediatric obesity named Dr. Thomas H. Inge — and the only real way to stop her cycle of hyperphagia (overeating) would be gastric bypass surgery. Said Inge,
I think it is disappointing that they cannot see the facts of this case. There is no evidence that doing nothing would be in this child's best interests.
TRICARE and Humana Military, the Shapiro family's health care provider, has apparently said it won't pay for the $50,000 surgery because Alexis is too young; gastric bypass and other weight loss surgeries might be covered, according to a TRICARE spokesperson, but only if the patient is 18 or has achieved "full bone growth." The spokesperson goes on to outline a suitably frustrating bureaucratic appeals process that the Shapiro family can embark on:
In general, our Managed Care Support Contractors are required to approve or deny coverage based on TRICARE policy. We have an appeals process in place specifically designed to give our medical professionals the opportunity to examine the details of any special cases when coverage is denied.
Even without the extra layer of indignation that comes from the fact that Alexis's father, Ian Shapiro, served in the Air Force and gets his family health plan through the U.S. military, Alexis's story seems, in the most favorable light, like some maddening and hyperbolic tale about the crushing impersonality of a bureaucracy whose rules are enforced without nuance. In the least favorable light? Maybe it's best to let young Matt Damon assuage all that paranoid cynicism.
Image via AP