It took a restraining order from U.S. District Judge Michael Baylson to move Health and Human Services Secretary Kathleen Sebelius to permit a 10-year-old girl suffering with cystic fibrosis to get the organ transplant she needs to live. The judge ordered Sebelius on June 5 to waive HHS regulations in the case of Sarah Murnaghan to be placed on the adult lung transplant list. Sarah and her parents are residents of Pennsylvania.
While the girl is at the top of the list for available pediatric lungs, they are seldom available. Normally, department policy keeps children younger than the age of 12 from receiving donated adult lungs. A hearing is scheduled for June 14 on the issue.
According to various reports, Sarah has but a few weeks of life left and may not survive the process of reviewing HHS policy Sebelius had already ordered. Sebelius has come under intense pressure within recent days. On June 4, a congressman pleaded with Sebelius to waive the regulation and said that he was “begging.” Another congressman, a practicing physician, shamed Sebelius by saying that all she need do is “sign a paper.” Both U.S. Senators from Pennsylvania, a Republican and a Democrat, have written to the secretary asking her to relent.
“I’m begging you,” Rep. Lou Barletta (R-Pa.) told Sebelius at a hearing this week in the House of Representatives, asking her to waive the rules until they can be reviewed. “Sarah has three to five weeks to live. Time is running out.”
Sebelius admitted that the case is “agonizing” but also that her review of the policy would take longer than the girl has left. She said it was not her place to pick and choose transplant recipients. “I can’t imagine anything worse than one individual getting to pick who lives and who dies,” she said. Arguing for fairness, Sebelius said putting the girl at the list for a transplant would put other children at a disadvantage. In response to Congressman Barletta’s plea, Sebelius said, “I would suggest, sir, that, again, this is an incredibly agonizing situation where someone lives and someone dies.” Sebelius added, “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].”
According to Politico, New York University ethicist Arthur Caplan does not believe that Sebelius should make a snap decision in this case, based on emotion. “Should Sebelius step in and do something? No. She doesn’t have all the facts.” He added that a response to media savvy supplicants “or the noisiest person in line” is bad policy. Caplan, who has been described as a bioethicist, has served as Chair National Cancer Institute Biobanking Ethics Working Group and the Chair of the Advisory Committee to the United Nations on Human Cloning, and the ethics committee of the American Society of Gene Therapy.
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