A critically ill 10-year-old girl in Pennsylvania in the final stages of lung failure is not expected to live through the weekend without a double lung transplant.
"I wish I could get the system to say ‘every child who needs a lung transplant gets precedence,’ but that’s not really the way the system is designed to work."
Sarah Murnaghan is on the top of the pediatric transplant list — and has been for 18 months — but pediatric donors are rare.
She was also recently added to the adult transplant list, but much to her parents' dismay, she's the very last name on that roster — despite the fact her condition is among the most dire in her region and a transplant could fully cure her.
Her case has sparked outrage among many, including some medical ethicists, who say it's unconscionable to deny her a transplant organ that would be hers if she were a year older.
Her Congressman, Patrick Meehan, has written to Secretary and Health and Human Services Kathleen Sebelius to address what he calls "tragic unfairness."
An online petition has also been launched on Change.org, calling for changes to the rules governing organ donations.
The physicians who drafted the rules that are keeping Sarah at the bottom of the transplant list say the decision is far more complicated than many realize.
Dr. Stuart Sweet is one of those physicians. He's a pediatric pulmonologist at St. Louis Children's Hopsital and medical director of the world's largest pediatric lung transplant program, at Washington University in St. Louis.
He's also a member of the oversight committee of the Organ Procurement and Transplantation Network and United Network for Organ Sharing (UNOS), and helped draft the current rules for allocating organs.
"The organ allocation system is designed to offer organs as fairly as possible for every patient waiting for organs, " Sweet told Here & Now's Meghna Chakarabarti. "I have advocated for children at UNOS every step of my time there and I wish I could get the system to say 'every child who needs a lung transplant gets precedence,' but that's not really the way the system is designed to work."
- Dr. Stuart Sweet, pediatric pulmonologist at St. Louis Children's Hopsital and medical director of the Pediatric Lung Transplant Program, at Washington University in St. Louis.
This segment aired on May 30, 2013.