Lawmakers urge Sebelius to let dying child have shot at lung transplant

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Parents of dying girl challenge organ donor rule

10-year-old with cystic fibrosis waiting for a new lung

House Republicans on Tuesday pressed the country’s top health official to cut through the government red tape in order to let a dying child have a chance at getting a lung transplant, as Health and Human Services Secretary Kathleen Sebelius continued to argue that the situation is "difficult."

Sebelius, ultimately, did not say what the government would do in the high-profile case of 10-year-old Sarah Murnaghan, who is dying from cystic fibrosis but cannot get an adult lung until they are offered first to adult patients. According to federal policy, the minimum age for her to be on the adult list is 12.

Georgia Republican Rep. Tom Price, a doctor, told Sebelius that he understands the federal policy and appreciates her sympathy about the situation. But, he said, she can save the child’s life by “signing a paper.”

Price cut off Sebelius during a Republican-led House committee hearing on the department’s 2014 budget proposal, as she was talking about how she personally talked to Sarah’s mother.

“I cannot image anything more difficult,” Sebelius continued after her exchange with Price.

Sebelius also repeated what she has said in recent days -- that she has asked for a review of the policy.

Price, though, said the child could die during the review process, considering it also includes a lengthy public-comment period.

“I’m begging you,” Rep. Lou Barletta, R-Pa., said. “Sarah has three to five weeks to live.”

Pediatric lungs are rare, and the Murnaghan family thought their daughter would have a shot at a transplant if she made a list of adults.

Sebelius repeated that surgeons and transplant doctors say the probability of a successful transplant is low when a child as young as Sara receives an adult lung.

However, Barletta and others say Sarah’s doctors think the transplant could be successful.

Sarah is being treated at Children's Hospital of Philadelphia. She is a top candidate on the pediatric-transplant list, but officials say there are far fewer pediatric donors due to improved treatment.

The nonprofit that manages the transplant system – the Organ Procurement and Transplantation Network --- says a policy change is unlikely to come soon enough to make a difference in Sarah's case.

Republicans at the hearing also got support for Pennsylvania GOP Rep. Patrick Meehan, a former U.S. attorney, who said his review of federal policy shows Sebelius could a make the exception “without upsetting precedent or violating the consistency of allocation policy.”

He also suggested the child is a victim of age discrimination, saying in a letter Tuesday to Sebelius: “Sarah is not asking to be placed ahead of another, but rather she is petitioning for the ability to compete for equitable treatment based on sound medical judgment and that she be accorded her appropriate place in line. Her need and survivability are the critical factors.”

The Associated Press contributed to this report.