For thirteen-year-old Juliet Zangrilli, of Paoli, everything changed in February when she was diagnosed with primary hemophagocytic lymphohistiocytosis, writes Nicole Leonard for the WHYY.

This rare genetic condition causes white blood cells to damage healthy blood cells and organs. In most cases, it is fatal if left untreated.

Juliet’s symptoms appeared late and did not follow the usual path, so required a unique treatment plan.

After six weeks at the Children’s Hospital of Philadelphia, Juliet’s medical team found a well-calibrated combination of medications to stabilize her condition and the teen could finally go home.

But once Juliet got home, her family faced another issue. Her insurance, Blue Cross Blue Shield of Illinois, denied outpatient coverage of a medication she was using because it is currently in clinical trials to treat pediatric HLH. The medicine could cost the family over $17,000 for a 60-count supply.

Now Juliet and her parents, Gus and Molly Zingrilli, are gearing up for a fight with the insurance company over the decision.

“They [insurance] don’t really have a playbook for these kinds of ultra-rare disease situations,” said rheumatologist Dr. Scott Canna, who is treating Juliet at CHOP. “The knee-jerk response would be rejection because it’s not an FDA-approved indication.”

Read more about Juliet Zangrilli’s family helping her fight her condition and insurance in the WHYY.

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