A dying Pennsylvania girl has been placed on the adult waiting list for donated lungs amid a court fight over the nation’s transplant rules, with help from a judge who granted another petition Thursday from a boy at the same hospital.
The Organ Procurement and Transplantation Network added 10-year-old Sarah Murnaghan to the list Wednesday night after a federal judge ordered U.S. Health and Human Services Secretary Kathleen Sebelius to suspend a 12-and-over age requirement.
Sarah, who has end-stage cystic fibrosis, also remains on the priority list for a set of pediatric lungs, Sebelius said. The girl’s family, through a spokeswoman, said her condition had worsened Thursday at Children’s Hospital of Philadelphia.
The mother of an 11-year-old New York City boy hospitalized there filed a lawsuit Thursday, and U.S. District Judge Michael Baylson likewise granted that request on the grounds the boy was otherwise facing death. Javier Acosta, who also has cystic fibrosis and lost a brother to the disease, is in intensive care.
The families are challenging existing transplant policy that made children under 12 wait for pediatric lungs to become available or that required them to wait for adults lungs until adolescents and adults on the waiting list had been considered. They say pediatric lungs are rarely donated.
“The rule’s not working. And they’re reconsidering it, but … Javier, Sarah, they would die in the meantime,” said lawyer Stephen Harvey, who represents both families.
The court rulings, for now, apply only to these two children. An expert questioned the decision on medical and ethical grounds.
“When a judge steps in and says, ‘I don’t like these rules, I think they’re arbitrary,’ they better be very arbitrary or he’s undermining the authority of the whole system,” said Dr. Arthur Caplan, a bioethicist at New York University Langone Medical Center.
Sebelius’ office complied with the judge’s ruling in the two cases rather than appeal it, although she had declined to intervene in Sarah’s case earlier in the week, on grounds such decisions should be left to transplant experts.
Nationwide, about 1,700 people are on the waiting list for a lung transplant, including 31 children under age 11, according to the Organ Procurement and Transplantation Network.
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