Organ transplant groups change rules due to Sarah Murnaghan

As expected, the organizations that set national organ allocation policy on Monday permanently adopted the temporary rule change that enabled then-10-year-old Sarah Murnaghan of Newtown Square to receive adult lungs a year ago.

In a statement, the board of directors of the Organ Procurement and Transplantation Network/United Network for Organ Sharing said the change would expand access only "for a very limited group of young lung transplant candidates."

Sarah is doing well, and her parents, Janet and Francis, praised the decision.

"From the beginning, this fight has always been not just about Sarah - because there was a very good chance it would have been too late for her - but for every family in our situation," they said in a statement. "Today's vote is important for two reasons: More children will be fortunate enough to receive lifesaving lung transplants, and the medical community has determined this is the right step to take."

The Murnaghans were criticized for waging a legal and media campaign to try to save their dying daughter. They accused the federal allocation system of age discrimination because children under 12 could not be considered for adult donor lungs ahead of wait-listed adults - including adults in less dire need.

The parents contended that the age cutoff was arbitrary, and that a child's physical size determines suitability for adult lungs, which can be cut down to fit a child's chest. In June 2013, a federal judge agreed, and days later, the organizations adopted the temporary rule change.

In the year since the temporary rule change took effect, 12 children under age 12 have sought "exceptions" so they could be considered for adolescent and adult lungs - as well as pediatric lungs - based on medical need.

Sarah, however, is the only child who has clearly benefited from the exception. Most of the others who wound up being transplanted received pediatric lungs, "consistent with standard allocation policy," the organ procurement network statement said.

Sarah, now 11, has cystic fibrosis, as do most children on the lung transplant waiting list - usually fewer than 20 children nationwide.

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