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 or 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 more difficult to weigh their risks versus their chances of surviving transplants, 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 places 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)?" she said. "Or do you put them in the line?"Suggest a correction