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.
He said the judge's ruling "did hit a moral nerve" because the network recognizes the need to examine the claim that the 12-year-old distinction for lung transplants is arbitrary, but the network also tried to "preserve the integrity of the system by not changing the rule" based on court intervention.
The Murnaghans' said in a statement that they consider the creation of the appeals process "a tremendous win for Sarah" and all other children waiting for lungs, but they added that the biggest issue is finding enough donors to help people who need transplants. "We hope Sarah's story moves people to become organ donors," they added.
The Murnaghans' attorney, Steve Harvey, said the vote creates "a little appeals process" and that Sarah's case may go back before the network's new review board. But he added that they plan to ask Sebelius to keep Sarah eligible for adult lungs, as the judge instructed, until such a review is over.
The family has said Sarah may only have a few weeks to live and that no suitable lungs have been found so far for her, even with the emergency exemption.
Network committee member Alexandra Glazier said during the call that while she can't comment on specific transplant cases, lawsuits are "not an appropriate approach" to managing organ donation. She said that while an order by any judge might be well-intentioned, it would "inevitably fail" to take into account the many complex medical and ethical issues that go into crafting broad national rules. Glazier is with the New England Organ Bank.
She also said that letting the courts decide such issues would set a terrible precedent.
"If some candidates perceive judicial intervention as a way to gain more favorable access to transplant, the result is likely to be significant chaos and inherent unfairness because access to the courts is not equal," Glazier said, adding that "public trust and procedural fairness demands that organ allocation policies be made in an open public process and not by urgently convened committees."
While members of the network's executive committee voiced sympathy for anyone who is waiting for a transplant, they noted that making any sudden change to the system to help one group risks harming some other group. The existing system was created after years of reviews by numerous medical professionals and members of the public.
The network also said the new special review option will expire on July 1, 2014, unless the full board of directors votes to keep it in place. The group said in a statement after the teleconference that currently there are 1,659 candidates nationwide waiting for a lung transplant, of which 30 are age 10 or younger. The group said it was not immediately clear how many children may consider the option of a review under the new appeals process.
The network said that since 2007, only one lung transplant in the United States has occurred from a donor older than age 18 into a recipient younger than 12.