Health and Human Services Secretary Kathleen Sebelius rejected a direct appeal from Congressman Lou Barletta (R-PA) to suspend a federal regulation that would deny an essential lung transplant for a 10-year-old girl suffering with end-stage cystic fibrosis. “Please, suspend the rules until we look at this policy,” asked Barletta during a June 4 hearing in the House of Representatives at which Sebelius appeared. "I'm begging you," said Rep Barletta to Sebelius in a plea for the girl's life. "She has three to five weeks to live."
At issue is the life of Sarah Murnaghan who, since she is under the age of 12, cannot qualify for an adult lung transplant. Currently, the pediatric lungs for which she can qualify are not available. Sebelius has the authority to waive the rules on behalf of the girl.
Her parents and family have made a public appeal to suspend the rule, and have also issued a petition at Change.org.
As of late June 4, there were nearly 350,000 signatures appended to the web petition.
In response to the congressman's appeal, Sebelius said, “I would suggest, sir, that, again, this is an incredibly agonizing situation where someone lives and someone dies,” Sebelius replied. “The medical evidence and the transplant doctors who are making the rule — and have had the rule in place since 2005 making a delineation between pediatric and adult lungs, because lungs are different that other organs — that it’s based on the survivability [chances].”
However, Rep. Barletta asserted that doctors believe that Sarah can survive an adult lung transplant. During the hearing, Rep. Barletta also said that Sarah has but three to five weeks to live. Sebelius claimed that 40 people in Pennsylvania are on the “highest acuity list” for lung transplants.
Rep. Tom Price (R-GA), a physician, told Sebelius that while he understands the federal policy, he said Sebelius can save the child’s life by just “signing a paper.”
Sebelius claimed that she had spoken with the mother of the afflicted girl. Referring to the parents' anguish, Sebelius said “I cannot image anything more difficult.” The secretary also repeated that she has called for a review of the policy. However, Rep. Price voiced fears that Sarah could die while federal bureaucrats examine the issue.
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