Kathleen Sebelius won’t waive regulation for girl with five weeks to live: ‘Someone lives and someone dies’

Health and Human Services Secretary Kathleen Sebelius rebuffed an appeal from Rep. Lou Barletta on behalf of a girl who needs a lung transplant but can’t get one because of a federal regulation that prevents her from qualifying for a transplant.

“Please, suspend the rules until we look at this policy,” Barletta, a Pennsylvania Republican, asked Sebelius during a House hearing Tuesday on behalf of Sarah Murnaghan, a 10-year-old girl who needs a lung transplant. She can’t qualify for an adult lung transplant until the age of 12, according to federal regulations, but Sebelius has the authority to waive that rule on her behalf. The pediatric lungs for which she currently qualifies aren’t available.

“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].”

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UPDATE!
Sarah Murnaghan lung transplant case: Sebelius ordered to make exception on transplant


A federal judge has ordered HHS Secretary Kathleen Sebelius to allow Sarah Murnaghan, a 10-year-old in Pennsylvania dying of cystic fibrosis, to be moved to the adult lung transplant list. Normally federal policy prevents children younger than 12 from receiving donated adult lungs, but Sebelius has been under pressure to change the policy.

The parents of the girl asked the judge on Wednesday to order Sebelius to alter organ donation rules so that the dying child has a better chance of receiving new lungs. They say she is running out of time. U.S. District Judge Michael Baylson granted a temporary restraining order to exempt Murnaghan from the current policy, and there will be a hearing on June 14.

Read more: http://www.politico.com/story/2013/06/sarah-murnaghan-lung-transpla...

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