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Sebelius: I Can’t Step Into Girl’s Transplant Case

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PHILADELPHIA (CBS/AP) — The U.S. Secretary of Health and Human Services says she doesn’t want to intervene in transplant decisions about a dying Pennsylvania girl when other children are just as sick.

Kathleen Sebelius says medical experts should make those decisions.

SIGN: Petition For Sarah

But relatives of 10-year-old Sarah Murnaghan say they want the policy changed for all children awaiting a lung transplant, not just Sarah.

(credit: CBS3)

(credit: CBS3)

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.

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.

On Tuesday, WPHT’s Gary R’nel spoke with Congressman Lou Barletta who is calling for a rebuff of the law so that Sarah might be able to receive the transplant.

“Sarah ranks first at the top of the list in the pediatric list, and if she were 12-years-old, she would also be at the top of the adult list.  She is being denied that opportunity because of her age,” said Barletta.

“Sarah’s parents are not asking for special treatment and I pointed that out.  She’s not asking for special treatment, she’s asking for equitable treatment,” said Barletta.

To listen to the full WPHT interview, click here.

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.

“It tugs at my heart. It’s not a perfect system. There is no perfect system. It’s the best we can do right now,” said Dr. Stuart Sweet, who is a board member of the United Network of Organ Sharing.

The organization issued a statement that says the rules can’t be changed for individual cases.

“If I change the system to give Sarah an advantage, there’s another patient, very likely an adolescent, who then gets a disadvantage,” said Dr. Sweet.

Sarah’s been on the waiting list for 18 months. Her options are limited, but she’s not giving up hope.

“I’m not going for easy. I’m just going for possible,” said Sarah.

RELATED STORIES:

Local Case Causes Officials To Mull Over Guidelines For Lung Transplants And Children

Pa. Girl’s Family Appeals For Direct Lung Donor

Will Sarah Be Saved? Family Fights National Organ Donor Rule

Pa. Girl’s Parents Challenge Lung Donor Rule

(TM and © Copyright 2013 CBS Radio Inc. and its relevant subsidiaries. CBS RADIO and EYE Logo TM and Copyright 2013 CBS Broadcasting Inc. Used under license. All Rights Reserved. This material may not be published, broadcast, rewritten or redistributed. The Associated Press contributed to this report.)

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