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Children's Hospital of Philadelphia Charges Dying Girl Hundreds of Thousands for Gene Therapy

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The Children's Hospital of Philadelphia (CHOP) made headlines in December for using experimental gene therapy to save the life of 6-year-old Pennsylvanian Emma Whitehead, who was dying of leukemia.

A reprogrammed version of HIV, which causes AIDS, was used by doctors at the Children’s Hospital of Philadelphia to end her terminal leukemia.

However, the hospital recently made headlines again for charging hundreds of thousands of dollars to a Croatian child, Nora Situm, 5, to have the same gene therapy.

According to Philly.com, outrage was expressed on the web, especially Facebook, but the Children's Hospital of Philadelphia would not discuss the specific case because of patient privacy issues (even though the hospital did discuss Whitehead).

However, the hospital did state that it "estimates the costs of treatment in advance and seeks payment at the time treatment begins. 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."

Nora's mother, Dana Atanosovska Situm, held a news conference in Croatia on Wednesday to thank support groups, celebrities, donors, and Croatia's capital city, Zagreb, for helping to raise $837,000.

Situm said that Children's Hospital of Philadelphia original bill was for $575,000, but that $262,000 was added to cover five years of post-treatment care costs.

"I corresponded with the hospital until 2:40 a.m. this morning," Situm said. "It was a shock to see there were now two invoices. After going through this, I will never say anything against our [socialized] health system. What they have over there is just terrible."

UPDATE:

Children's Hospital of Philadelphia sent this statement, in part, to Opposing Views:

Having obtained consent from the family, we can now confirm that Nora Situm is a patient at The Children’s Hospital of Philadelphia.  

Today, the medical team began their examination of Nora, and also began the evaluation process to determine whether Nora will be a candidate for T cell therapy.  This medical evaluation will continue through next week.

CHOP’s process estimates the costs of treatment in advance and seeks payment at the time treatment begins.  Additional follow-up clinical treatments are sometimes necessary and can be administered over several years, either at CHOP or back in the patient’s home country.  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 attempts to explain those potential costs to patient families at the outset so they understand the financial issues they may be facing.  

We try to ensure that all international families understand the difference between the initial costs of treatment charged by CHOP, which does not change, and the potential future costs which will depend on future clinical treatments.

Source: Philly.com

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