Court Ruling Overrides Sebelius, Allows Dying 10-Year-Old to be Eligible for Lung

As the Department of Health and Human Services refused to give in to lawmakers' demands to allow a 10-year-old girl to receive a life-saving transplant, a judge granted an emergency motion today for a temporary restraining order to prevent HHS from enforcing a policy that prevents children under 12 from getting adult lung transplants.

Sarah Murnaghan, 10, has cystic fibrosis and is fighting for her life at the Children’s Hospital of Philadelphia with an estimate that she may have only a few weeks to live.

Sen. Pat Toomey (R-Pa.) and Rep. Pat Meehan (R-Pa.) asked Health and Human Services Secretary Kathleen Sebelius to use her authority to allow for Sarah and other children under the age of 12 to become eligible for adult organs.

"We believe the regulations allow for you to direct OPTN (Organ Procurement and Transplantation Network) to conduct an experimental variance under Section 121.8(g). In Dr. John Roberts's response to your request for additional information regarding organ donation policy, he indicated that medical literature suggests that such pediatric lung transplants have comparable outcomes but small sample sizes. An experimental variance in Sarah's case could help better inform the medical community's understanding of how these transplants work in pediatric settings," the lawmakers pleaded with Sebelius on Monday. "We do not have much time to wait."

At an HHS oversight hearing yesterday, Rep. Tom Price (R-Ga.), a doctor, asked Sebelius about the "arbitrary rule" keeping the girl from receiving a transplant.

"First, as a mother and a grandmother I can't imagine anything more agonizing than what the Murnaghans are going through, and I talked to Janet Murnaghan, the mother of Sarah, about this case. What I have also done is look very carefully at the history of the rules around lung transplant and organ transplant--" Sebelius said before Price interjected: "It simply takes your signature. It simply takes your signature."

"A study I know you have -- have ordered and I appreciate that, but a study will take over a year," Price added. "This young lady will be dead."

"Unfortunately, there are about 40 very seriously ill Pennsylvanians over the age of 12 also waiting for a lung transplant, and three other children in the Philadelphia at the same acuity rate as Sarah waiting for a lung transplant," Sebelius said. "The decisions of the OPTN, the transplant committee, which is not bureaucrats, it's transplant surgeons and health care providers who design the protocol, are based on their best medical judgment of the most appropriate way to decide allocation in an impossibly difficult situation... I would suggest that the rules that are in place and reviewed on a regular basis are there because the worst of all worlds in my mind is to have some individual pick and choose who lives and who dies."

Today Judge Michael Baylson, senior federal judge on the U.S. District Court for the Eastern District of Pennsylvania, granted a temporary restraining order and told the Sebelius to direct the transplant network to cease application of the under-12 rule as it applies to Sarah.

Baylson will also consider granting the same judicial protection to any other children with similar circumstances in the judicial district who present their case to the court.

The judge set a preliminary injunction hearing for June 14. The organ transplant network will hold an emergency review meeting on Monday.

“Finally, we have some positive news for Sarah and her family,” said Toomey.  “I applaud today’s ruling and am grateful to Judge Baylson for quickly issuing his decision on such an important matter."

“Now Sarah has a chance for a lung transplant, and I plan to keep fighting for her and others who deserve to be eligible," the senator added. "As I’ve said all along, Secretary Sebelius should use her authorities to make medical need and suitability, rather than age, be the primary criteria in determining how organ donations are prioritized. I hope this court ruling will encourage her to make this important policy change.”