Lung transplant rule could cost Delaware County girl her life

NEWTOWN SQUARE, Pa. - May 31, 2013

The fact that she's 10 and not 12 could mean the difference between life and death.

Sarah Murnaghan of Newtown Square has end-stage Cystic Fibrosis.

Doctors have given Sarah only a week or two to live without the transplant.

On Friday family members cheered for Sarah as she ran on a treadmill Friday. They've been championing the effort to give her a chance at an adult lung for her transplant.

Because Sarah is 10, she gets first dibs on lungs from kids her age, from 6 to 12.m But she does not get that same priority for adult lungs.

With so many people in need of transplants there just aren't enough to meet the demand.

Today Secretary of Health and Human Services Kathleen Sebelius called for a change in the current policy.

She wrote a letter to the Organ Procurement Transplantation Network (OPTN), asking the board to "initiate a process to review the OPTN lung allocation policy as soon as possible. I ask that you pay particular attention to the age categories currently used in lung allocation."

"It's really in my mind a recognition that the policy needs to be reconsidered," said Pennsylvania Congressman Pat Meehan, "but it's not going to be done in time for Sarah."

Meehan and Pennsylvania Senators Bob Casey and Pat Toomey have all asked Sebelius to intervene.

OPTN officials acknowledge that while they are on board to examine the policy, the change would take months.

"I think we're dealing with a tough bureaucratic circumstance," said Meehan. "I think we could come up with the justification for the Secretary to make some sort of interim decision that could be done for Sarah."

Friday night as they waited, Sarah's family was around her, supporting her and doing what they could to keep her healthy.

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