Marie McCullough, Inquirer Staff Writer Posted: Thursday, February 7, 2013, 5:41 AM

Two months ago, Children's Hospital of Philadelphia made international headlines for using an experimental gene therapy to save the life of a Pennsylvania girl who was dying of leukemia.

On Wednesday, the hospital made international headlines - and was denounced on Facebook as "cruel" and "heartless," as being "greedy monsters" and worse - for appearing to tack on hundreds of thousands of dollars to the original price of treating a Croatian child, Nora Situm, 5, with the same breakthrough therapy.

The online outrage built all day before the hospital responded.

It would not discuss the specific case because of patient privacy issues, but implied in its statement that Nora's parents did not understand the difference between the hospital's charges, and what the parents may have to pay for follow-up care "either at CHOP or back in the patient's home country."

Children's "estimates the costs of treatment in advance and seeks payment at the time treatment begins," the statement said. "Additional follow-up clinical treatments are sometimes necessary and can be administered over several years . . . .

"CHOP does not charge for this follow-up clinical treatment at the time of initial treatment. If the child is not further treated at CHOP, CHOP will never charge for the follow-up treatment. However, CHOP does explain those potential costs to patient families at the outset so they understand the financial issues they may be facing."

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