Girl Prompts Small Change to Organ Transplant Policy

June 11, 2013— -- The Organ Procurement and Transplantation Network voted to keep the so-called Under 12 Rule, but it created a mechanism that would allow doctors to request exceptions for their pediatric patients. A national lung review board would then approve these children for transplant consideration as adults case by case.

The transplant network convened an emergency meeting of its executive committee to evaluate the Under 12 Rule, a little-known organ transplant policy that a Pennsylvania couple brought to national attention after arguing that it had been pushing their dying 10-year-old to the bottom of the adult lung transplant waiting list.

Lawyers for Sarah Murnaghan, who is dying of cystic fibrosis, convinced federal Judge Michael Baylson on June 5 that the Under 12 Rule was discriminatory, prompting a temporary restraining order against Health and Human Services Secretary Kathleen Sebelius to prevent her from enforcing it for Sarah.

Read about the Murnaghans' battle to save Sarah.

Baylson's ruling forced OPTN to create a second database entry for Sarah with a fake birthday to trick the organ transplant system into thinking she was 12. The following day, another child in Sarah's hospital, Javier Acosta, 11, won the same reprieve.

Read about how Javier's brother died waiting for a lung transplant when he was 11.

But the OPTN decision doesn't mean Sarah's and Javier's cases need to go before a national lung review board immediately to keep their transplant database entries in the system. Since the courts forced OPTN to create these entries, a hearing scheduled for June 14 will determine whether they can stay where they are on the list or whether their cases need to be evaluated by the review board.

Sarah's mother, Janet Murnaghan, took to Facebook following OPTN's decision.

"We consider this a tremendous win for Sarah and all kids waiting for lungs!!!" she wrote. "I hope Sarah's story moves people to become organ donors, because more than any ruling it is the heroes who donate their organs that save lives."

Part of the OPTN meeting, which convened via teleconference, was dedicated to the ethics of judicial intervention in organ allocation and the fear that transplant candidates would sue to increase their likelihoods of getting the organs they need.

"Politicians and judges who intervene in a complex allocation algorithm may be well-intentioned but fail to consider all the moral variables that must be balanced at the macro level rather than through an individual candidate's experience," the OPTN ethics committee concluded. "The message that lawsuits are a mechanism for more favorable organ allocation runs the risk of disrupting a stable system based on public trust. For patients waiting for transplantation, the resulting lack of predictability may have unintended and lethal consequences."

Several medical, legal and health experts had condemned Baylson's ruling before the OPTN decision, arguing that existing lung allocation practices –- including the Under 12 Rule -- are based on medical evidence, and that allowing Sarah and Javier to be given special priority without OPTN approval was unfair to other candidates on the list.

"It is unlikely that the courts are the best place to make these decisions," said R. Alta Charo, a law and bioethics professor at the University of Wisconsin-Madison. "The reasons for giving priority to one category of patients over another are usually due to a complicated combination of factors."