Wednesday, June 5, 2013

A Little Girl Being Killed by "Red Tape"

In this May 30, 2013 photo provided by the Murnaghan family, Sarah Murnaghan, left, lies in her hospital bed next to adopted sister Ella on the 100th day of her stay in Children's Hospital of Philadelphia. (AP Photo/Murnaghan Family)
What do you do when your daughter is dying from end stage cystic fibrosis, and the only thing that could potentially save her life is being held up in a tangled mess of bureaucratic red tape?

For the family of 10-year-old Sarah Murnaghan it is a nearly unbearable existence. Over the past three months, they've watched their most beautiful daughter deteriorate under the ravages of this cruel disease. With just weeks to live, her parents work tirelessly each day to effect a policy change that would allow for the transplant of adult organs into end-stage pediatric patients.

Under the current policy, only children 12 or over can be placed on this list - even though, Sara's medical team and transplant doctors say that 'she is medically eligible for an adult lung.'

And, because their are so few pediatric lungs available, most children die waiting for their transplant.

It just makes sense to place them on the adult transplant list in those instances where doctors support that decision...right?

Health and Human Services Secretary Kathleen Sebelius would disagree, stating there are many complex factors that go into making this type of decision.

She was referring to the lack of solid data demonstrating the survival rates for pediatric patients receiving adult organ transplants—in other words, there just isn't that much data available to make a good determination.

"I'm begging you. ... She has three to five weeks to live. Please suspend the rules," Rep. Lou Barletta, R-Pa., urged Sebelius.

And yet, even with the continued support of surgeons, transplant doctors, and state officials—still, no decision has been made.

Sadly, it would seem in that in the end—an administrative policy is prohibiting them from helping her.
“We will not stand by and let Sarah die and we have filed in federal court for an immediate injunction to do what Secretary Sebelius will not: give Sarah and other children in her position a fair chance at life," said Janet Murnaghan, Sarah's mother.