The Tribune Democrat, Johnstown, PA

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June 11, 2013

Transplant vote seeks medical and legal balance

PITTSBURGH — Faced with a federal judge's order in the heart-wrenching cases of two terminally ill children seeking lung transplants, a national review board sought a balance that will keep such decisions in the hands of doctors, not lawyers or judges.

The executive committee of the Organ Procurement and Transplantation Network held an emergency teleconference Monday evening and resisted making rule changes for children under 12 seeking lung transplants, but it created a special appeal and review system to hear such cases.

Dr. Arthur Caplan, a bioethicist at New York University's Langone Medical Center, said the vote showed that the medical profession doesn't believe that it should be pressured into making hasty changes to the entire national transplant system based on a single case.

The meeting was prompted by the cases of 10-year-old Sarah Murnaghan of Newtown Square, Pa., and 11-year-old Javier Acosta of New York City, two terminally ill children who are awaiting transplants at Children's Hospital of Philadelphia. Last week, federal Judge Michael Baylson ruled that they should be eligible for adult lungs after U.S. Health and Human Services Secretary Kathleen Sebelius declined to intervene in such cases. Both children have end-stage cystic fibrosis, and Javier's brother died two years ago while on the waiting list.

Their families have challenged existing transplant policy that made children under 12 wait for pediatric lungs to become available or be offered lungs donated by adults after adolescents and adults on the waiting list had been considered. They say pediatric lungs are rarely donated.

Caplan said the network is trying to acknowledge the concerns Baylson raised but also issue a warning.

"I think what they're trying to tell the judge is: 'We have a system. It's working. Let us decide, not you," Caplan said.

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