One Woman Death Panel: Sebelius Won’t Allow Dying Girl to Have Transplant

National   Steven Ertelt   Jun 4, 2013   |   3:20PM    Washington, DC

HHS Secretary Kathleen Sebelius is refusing to intervene in a case of a young girl who needs a lung transplant as doctors have only given her weeks to live.

From a local news report:

The Newtown Square girl has been hospitalized for three months with end-stage cystic fibrosis.

Sarah is not giving up hope. She wants to be a singer, but needs a lung transplant to live. Her parents have been with her constantly while she waits at The Children’s Hospital of Philadelphia.

“She worries that she’s dying, because she’s not — she’s a smart kid. And she says to me, ‘Mommy, will I wake up tomorrow morning?’” said Janet Murnaghan.

Organ donation rules require adult lungs to be offered first to people over the age of 12. Sarah’s parents say that’s not fair.

“Rules are meant to be broken. My child is not a statistic. She’s a person,” said Janet.

Sebelius says she doesn’t want to intervene in the transplant case when other sick children are dying, but Sarah’s family says hey want the policy changed for all children awaiting a lung transplant, not just Sarah.

Sarah’s aunt Sharon Ruddock says older children should be eligible for adult lungs because so few pediatric lungs are available.

She says that would add just 20 children to the 1,600 people on the adult waiting list.

Sebelius has called for a review of transplant policies, but the Murnaghans says Sarah doesn’t have time for that

Sarah’s parents have launched a public relations campaign to try to get the rules changed and an online petition in support of Sarah has been created with thousands of supporters.

Congressman Patrick Meehan stepped in and sent a letter to the Secretary of Health and Human Services requesting that she address the tragic unfairness and act to give Sarah a chance at life.

Meanwhile, members of Congress asked Sebelius during a congressional hearing about Sarah’s case:

Health and Human Services Secretary Kathleen Sebelius rebuffed an appeal from Rep. Lou Barletta, R-Pa., 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,” Rep. Lou Barletta, R-Pa., 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 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 than other organs — that it’s based on the survivability [chances].”