PHILADELPHIA — 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 challenge 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.
"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.
According to the lawsuit, Javier's brother was the same age when he died while waiting for a lung transplant two years ago.
Sarah's family, which lives Newtown Square, filed suit Wednesday. Dr. Samuel Goldfarb, the medical director of the lung transplant program at Children's Hospital of Philadelphia, testified at an emergency hearing before Baylson hours later that Sarah's chances of survival are "very good" with a double lung transplant.
"The median survival for her age group right now is roughly — so median means half the people would be still alive at this time — is greater than six or seven years. If you live through the first year, it goes even higher. It's eight to nine years and that's the standard."
According to Harvey, the success rate for children receiving adult lungs matches that of older patients when the lungs are "downsized" or fitted for the child.
Baylson temporarily suspended the age limit for the two families until a June 14 hearing on their request for a broader injunction. Sebelius has said two other children also are at the Philadelphia hospital in the same condition, but Harvey said he does not represent them and did not know if more lawsuits would be filed.
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.