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| FILE - In this May 30, 2013 file photo provided by the Murnaghan family, Sarah Murnaghan, center, celebrates the 100th day of her stay in Children's Hospital of Philadelphia with her father, Fran, left, and mother, Janet. A federal judge in Philadelphia on Wednesday, June 5, 2013 made the dying 10-year-old eligible to seek donor lungs from an adult transplant list. |
PHILADELPHIA
(AP) -- A dying 10-year-old girl can move up the adult waiting list for a
lung transplant after a federal judge intervened in her case Wednesday,
a move questioned by a prominent medical ethicist.
U.S.
District Judge Michael Baylson suspended an age factor in the nation's
transplant rules for 10 days for Sarah Murnaghan because of the severity
of her condition.
The girl's family believes
that is enough time to find a match. Sarah has been hospitalized at
Children's Hospital of Philadelphia for three months with end-stage
cystic fibrosis.
"We are beyond thrilled,"
Janet Murnaghan, the girl's mother, told The Associated Press, while
adding, "Obviously we still need a match."
The
Newtown Square family filed suit Wednesday to challenge organ
transplant rules that say children under age 12 must wait for pediatric
lungs to become available, or wait at the end of the adult list, which
included adults who aren't as critically ill. The Murnaghans say
pediatric lungs are rarely donated, so they believe older children
should have equal access to the adult donations.
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.
Experts, though, questioned Baylson's decision on both medical and ethical grounds.
Lung
transplants are the most difficult of organ transplants, and children
fare worse than adults, which is one reason for the existing policy,
said Dr. Arthur Caplan, a bioethicist at New York University Langone
Medical Center.
He called it troubling, and
perhaps precedent-setting, for a judge to overrule that medical
judgment, and predicted a run to the courthouse by patients who don't
like their place on the waiting list.
"I'm not sure I want judges or congressmen or bureaucrats trying to decide what to do with organs at the bedside," Caplan said.
On
Tuesday, Health and Human Services Secretary Kathleen Sebelius declined
to intervene in the case, despite urgent pleas from several congressmen
from Pennsylvania. She said there were three other children at
Children's Hospital alone in the same condition.
Sebelius
has called for a review of pediatric transplant policies amid the
higher death rates for pediatric patients, but the Murnaghans say Sarah
doesn't have time for that.
Sarah's doctors,
one of whom testified Wednesday at an emergency hearing before Baylson,
believe they can perform a successful transplant on her with adult
lungs.
"She definitely understands things have improved quite a bit," the girl's aunt, Sharon Ruddock, said after the ruling.
Baylson's
order applies only to Sarah, at least until the scheduled June 14
hearing, when the family will push for a broad injunction on the age
limit.
Joel Newman, spokesman for the United
Network for Organ Sharing that operates the nation's transplant network,
said he was unaware of any previous court order that overruled a
transplant policy.
While many more adult lungs
than children's lungs wind up being donated, the ruling doesn't
guarantee Sarah a new set of lungs. The matches are based on blood type,
the risk of dying, the chance of surviving a transplant, and other
medical factors. The donor lungs would also have to be an appropriate
size for her chest.
Newman said some lungs
donated from deceased adults have been offered for children's
transplants over the past two years, although he couldn't give a number.
But he said all were turned down by the children's surgeons.
The
UNOS system was established to avoid bias in determining who gets
organs, thus ensuring that the rich or celebrities, for example, don't
have a better chance, Caplan noted. He said it is transparent, with
policies open to public comment and scrutiny before they're enacted.
"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. Why wouldn't anybody sue?"
