The story of a child whose family says she was denied a kidney transplant because of an intellectual disability is garnering headlines. But so far the story has been quite one-sided.
On Monday, WHYY’s Carolyn Beeler reported on the case of the Children’s Hospital of Philadelphia denying a kidney transplant to the three-year-old south Jersey girl. She has Wolf-Hirschorn syndrome, which causes delayed growth and physical and intellectual disability.
WHYY’s Dave Heller spoke to Robert Field, a professor of law at Drexel, about why privacy laws are preventing CHOP from defending itself any further than their official statement: “The Children’s Hospital of Philadelphia does not qualify potential transplant candidates on the basis of intellectual abilities.”
“CHOP is really caught in a bind here,” said Field. “They’ve got a side to tell in this story. But they really can’t say anything that says any details about the patient, her medical condition, her prognosis — anything that identifies her specifically.”
That’s federal policy under the Health Insurance Portability and Accountability Act (HIPAA), which guards the privacy of medical data. No doctor or hospital can divulge anything about an identified patient without the consent of the patient or his or her family.
However, noted Field, it is also possible that a medical provider could hide behind this HIPAA shield. Sometimes the law works to their advantage. So far, we have no way of knowing in this case.
Without knowing the full story, what do you think?