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Panel backs permanent change to child lung-transplant rules –

By Marie McCullough, Inquirer Staff Writer

POSTED: April 03, 2014

A panel of transplant experts is recommending permanent adoption of the temporary rule change that enabled a 10-year-old from Newtown Square to receive adult lungs in a transplant nine months ago.

When Sarah Murnaghan’s parents fought to improve their dying daughter’s access to adult lungs, their tactics – including a media campaign and a federal lawsuit – set off an ethics storm.

But now, the consensus seems to be that Janet and Francis Murnaghan raised legitimate concerns, and that the impact of expanding access is small because so few children need lung transplants.

University of Michigan lung transplant director Kevin M. Chan, a member of the panel proposing a permanent rule change, said: “The number of patients it affects is very low. It was felt that for us to go back would be unacceptable.”

The panel advises the Organ Procurement and Transplantation Network, which sets national organ allocation policy. The OPTN will accept public comment on the proposed rule change through June 13, then make a decision.

“We’re thrilled and pleased,” Janet Murnaghan said. “Of course we went into this for our daughter. But we always had other kids in mind because we didn’t know if it would be in time for her.”

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

Her parents argued that the “Under 12 Rule” was discriminatory because children in that age group could not be considered for adult donor lungs ahead of waitlisted adults, including those in less dire need.

Unlike adults, children under 12 do not receive a medical urgency ranking, or “lung allocation score,” because there are not enough pediatric data to validate such a system. The Murnaghans contended the age cutoff was arbitrary, that a child’s physical size determines suitability for lungs from older donors.

Last June, a federal judge agreed and suspended the Under 12 Rule. Days later, the OPTN voted to let transplant centers request an exception so a child under 12 could be classified as an adolescent, then be considered for adolescent and adult lungs – as well as pediatric lungs – based on medical need.

The impact of the rule change has been small, OPTN data show. Of 11 children granted exceptions through mid-March, five received transplants. Three received lungs from other children, one received lungs from an adolescent (aged 12 to 17), and one – Sarah – received adult lungs, which were cut down to fit her chest.

“Small numbers can be interpreted in a lot of ways, but that’s one of the reasons this group has been overlooked,” Janet Murnaghan said. “I read those numbers as the new rule saved two kids.”

In a December journal article, a scientific group that analyzes transplant data concluded “there is little evidence that the allocation system led to differences in waitlist mortality or transplant rates for children compared with adults.”

But the group also acknowledged “the data are sparse,” and comparisons are inherently difficult.

St. Louis pediatric lung-transplant specialist Stuart Sweet, on the OPTN board of directors, last year criticized the “dangerous precedent” of judicial intervention in the Murnaghans’ case.

But last week, he said, “Almost from the very beginning, I felt there should be a path for an exception for children under 12 . . . if they can make a reasonable case for it.”

Sweet said he favors another change under consideration by OPTN: Give children in dire need access to adolescent lungs from far away. Currently, lungs must offered within a geographic region before they can be offered outside that area.

“I personally think we should be trying to find more size-matched organs rather than take adult organs” and give them to children, he said.

Sarah’s case still stirs passions on all sides. A Facebook page titled “Discussing Lung Transplantation and Sarah Murnaghan,” set up by an anonymous critic, questioned the parents’ ethics and the quality of Sarah’s post-transplant life.

In contrast, “Team Sarah,” a group of public relations professionals who donated their expertise to help the Murnaghans, was honored last month at the annual PRWeek Awards ceremony in New York.

Janet Murnaghan, who once worked in PR, and her sister, Sharon Ruddock, have been invited to join a lung-transplant discussion panel at the May meeting of the American Thoracic Society.

Sarah, meanwhile, has come a long way – and has a long way to go.

When she left Children’s Hospital of Philadelphia in September after two successive transplants (her first set of adult lungs failed), she was wheelchair-bound, on high doses of painkillers and steroids, and tethered round-the-clock to a ventilator.

Now, with intensive, ongoing rehabilitation, she is almost weaned from the ventilator. She bowls and plays mini-golf, and is off painkillers.

“We would love for her to go back to school next year,” her mother said. “We still have a lot of physical rehab to get there, but she’s determined.”

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