|
| In this May 30, 2013 photo provided by the Murnaghan family, Sarah Murnaghan, left, lies in her hospital bed next to adopted sister Ella on the 100th day of her stay in Children's Hospital of Philadelphia. The 10-year-old suburban Philadelphia girl has been hospitalized at Children's Hospital of Philadelphia for three months with end-stage cystic fibrosis. Her family wants an exception made for Sarah to get an adult lung, because so few pediatric lungs become available. Kathleen Sebelius, U.S. Secretary of Health and Human Services, says she doesn't want to intervene in transplant decisions when other children are just as sick. Sarah's relatives say they want the policy changed for all children awaiting a lung transplant, not just Sarah. |
PHILADELPHIA
(AP) -- The U.S. health secretary said she won't intervene in an
"incredibly agonizing" transplant decision about a dying Pennsylvania
girl, noting that three other children in the same hospital are just as
sick.
Health and Human Services Secretary
Kathleen Sebelius told a congressional panel Tuesday that medical
experts should make those decisions.
However,
relatives of 10-year-old Sarah Murnaghan said Sebelius' remarks confused
them because they want a policy change for all pre-adolescent children
awaiting lung transplants, not just Sarah.
The
Newtown Square girl has been hospitalized at Children's Hospital of
Philadelphia for three months with end-stage cystic fibrosis and is on a
ventilator. Her family wants children younger than 12 to be eligible
for adult lungs because so few pediatric lungs are available.
Under
current policy, only patients 12 and over can join the list. But
Sarah's transplant doctors say she is medically eligible for an adult
lung.
The change would add perhaps 20 children
from ages 8 to 11 to the adult waiting list, which has more than 1,600
people on it, according to Sharon Ruddock, Sarah's aunt.
"One
moment they say we're asking for an exception for Sarah. The next
moment they say we're asking for sweeping changes and it has to be
studied," Ruddock said Tuesday.
Sebelius has called for a review of pediatric transplant policies, but the Murnaghans say Sarah doesn't have time for that.
"I'm
begging you. ... She has three to five weeks to live. Please suspend
the rules," Rep. Lou Barletta, R-Pa., urged Sebelius at a House
Education and the Workforce Committee hearing on her department's
budget.
Sebelius conceded the case was an
"incredibly agonizing situation" but said many complex factors go into
the transplant-list formula.
Researchers have
less data on lung transplants in pre-adolescents because only about 20 a
year are done. And young children suffer from different lung diseases,
making it harder to weigh their risk versus their chance of surviving a
transplant, according to a letter to Sebelius from Dr. John P. Roberts,
president of the Organ Procurement and Transplantation Network.
Amid
concerns about the higher mortality rate in pediatric patients waiting
for lung transplants, the network has tweaked its policies in recent
years, Roberts said. The new rules give the younger children priority
over adults when adolescent lungs become available and give the sickest
children priority in a 1,000-mile radius, a broader range than used in
the adult system, he said in the letter, which was shared by the office
of Rep. Patrick Meehan, R-Pa.
Meehan, in a
letter to Sebelius, said Sarah's doctors are confident they can perform a
successful transplant on her. And he said she would jump to the top of
the adult list if placed there, given the stage of her disease.
Ruddock,
the aunt, called it "a question of morality" that children get a place
in the adult line, given that a far higher percentage of children die
waiting for pediatric lungs than do adults on that waiting list.
"Do
you put them at the back of the line if you're not sure how to measure
(their potential outcome)? Or do you put them in the line?" she said.
