Charo said she had not heard of any other court rulings overriding an OPTN decision, but she hoped Baylson's ruling would not set a precedent. (Courts have intervened in medical decision-making before, Charo said, citing the Terri Schiavo case in which doctors, lawyers and family members battled for more than a decade over whether to remove Schiavo's feeding tube and let her die.)
A joint statement by the American Society of Transplant Surgeons and the American Society of Transplantation last week said that the existing policy was formulated from the best information available, and to change or obfuscate it would be "unwise" without the calculative approach mandated in the National Organ Transplantation Act.
As it stands now, lung transplant candidates older than 12 are assigned a lung allocation score, or LAS, based on a complex mathematical formula that includes the patient's age and size. For transplant patients younger than 12 -- of which there are 20 nationally compared with about 1,600 adults -- the LAS is not used. Instead, patients are broken into "priority 1" and "priority 2." It's this difference that has been called discriminatory in court.
"I don't think that it's reasonable to call them discriminatory if they're established based on medically relevant facts," said Dr. Margaret Moon, a pediatrician and bioethicist at Johns Hopkins Berman Institute of Bioethics. "We can't ask the judge, and we can't ask Congress to determine medical facts."
Children get priority for lungs donated from children younger than 12, but they have to wait for children between 12 and 17 to decline lungs donated from 12- to 17-year-olds before they get a chance at them. Lungs donated by anyone older than 18 are offered to all candidates older than 12, depending on their LAS. Only if all local matching candidates 12 and older decline the adult lungs can they be offered to children within 500 miles of the hospital where the lungs were harvested.
Since Sarah and Javier now have two transplant database records -- one with their actual birthdays and one with fake 12-year-old birthdays -- they can be considered for child lungs based on their priority level and adult lungs based on their LAS.
OPTN's rule amendment provides for this dual consideration to be available to children who have been approved for an exception to the Under 12 Rule by a national lung review board. The amendment takes effect immediately, but it expires on July 1, 2014, when OPTN can re-evaluate it.
Moon said she supports the decision to take another look at the Under 12 Rule, but that an adult lung transplant would likely do Sarah and Javier more harm than good.
Dr. David Cronin, a transplant surgeon at the Medical College of Wisconsin in Milwaukee, said most adult donor organs are not suitable for child recipients. Resized lung transplants -- called lobe transplants -- are not commonly performed on children.
"Is this prolonging [Sarah's] suffering in a way that's dangerous?" Moon asked.
Cronin said he "totally" disagreed with Baylson's ruling.
"The allocation system is transparent, equitable, fair and represents evidence-based medicine," Cronin said. "We have come a long way in fine-tuning the system and improving access and equity."
Moon said the children's parents can't be faulted for fighting the organ allocation system, because it's their job to put their children first. Even though Moon is a pediatrician, she said she takes her children to another doctor when they're sick because she can't be objective about their medical care.
"How is that helping?" she asked of granting a potentially harmful lung transplant to a child. "Is that medicine or is that just acquiescing to a parent's anxiety? It's a harsh thing to say, but parents don't get to drive medical choices for that reason."