How Many Children Benefited From Lung Transplant Rule Tweak?

The Sarah Murnaghan rule change is set to expire and under review.

March 26, 2014— -- When Sarah Murnaghan’s parents fought to boost the dying girl’s access to an adult lung transplant, they said they hoped to help all children on the waiting list. But new data from the agency charged with allocating organs show that only one child has definitely benefited from the fight: Sarah Murnaghan.

The Murnaghan family had fought the so-called Under-12 Rule to keep their 10-year-old daughter from dying of cystic fibrosis last summer, arguing that lung transplant rules were “arbitrary” and “discriminatory” against children.

Sarah's case prompted a temporary tweak to the organ transplant policy that is up for review.

The Organ Procurement and Transplantation Network, an organization under contract with the federal government to allocate organs, voted June 11 to allow children to be granted exceptions to the Under 12 Rule on a case-by-case basis. The OPTN is reviewing this temporary rule now, and has opened the matter for public comment before the July 1 expiration date.

Read what experts had to say about fairness of the Under 12 Rule in June.

So far, 11 children have been granted exceptions to pediatric lung transplant rules, allowing them to be considered for lungs based on the same algorithm that is used for adults, called the LAS, or lung allocation score. This score typically isn’t used for pediatric patients on the waiting list, which usually number about 20 nationwide, because there isn’t enough data to show that it works.

Instead, the children are labeled “priority 1” or “priority 2,” and they get preferential treatment when child and adolescent lungs become available. But children younger than 12 only get offered adult lungs after they’ve been offered to other matches over 12 with a high enough LAS score. It’s this part of the rule that the Murnaghans argued was discriminatory.

After the Sarah Murnaghan case garnered national attention and a lawsuit, Sarah and the other children granted rule exceptions were given two database entries on the lung transplant waiting list: one with their real birthday, and one with a birthday to trick the OPTN’s system into counting them as 12-year-olds, too.

Out of 11 children who were granted exceptions to potentially receive adult lungs, five have gotten lung transplants between June 11, 2013 and March 14, 2014, but they didn’t all receive adult lungs, according to OPTN.

Three of them received pediatric lungs, according to OPTN. This means the exception policy didn’t help them because they would have been considered first for pediatric lungs anyway under the old rules.

“It’s not as binary as they got lungs this way and otherwise they would not have received them," Dr. Jeffrey Kahn, a professor at the Johns Hopkins Berman Institute of Bioethics, said, adding that the OPTN members have their work cut out for them. “Maybe they weren’t disadvantaged at all.”

One child got adolescent lungs, meaning they came from a donor who was between 12 and 17 years old, according to OPTN. Since children younger than 12 are typically offered adolescent lungs after they’ve been offered to other matching adolescents, it’s not clear whether this child would have gotten them under the old rules.

Finally, one child has gotten an adult lung transplant since June 11. Although the OPTN isn’t naming names, the Murnaghan family has said that Sarah Murnaghan underwent the double-lung transplants from adult donors in June.

The first set failed, but the second was successful. She has been home in Newtown Square, Penn. since August, and recently rode a bike for the first time.

Read about Sarah's bike ride here.

Dr. George Mallory, the medical director of the lung transplant program at Texas Children’s Hospital in Houston, said it’s not clear why 10 of the children who wanted to be considered for adult lungs didn’t get them. It’s possible, he said, that their doctors were offered the lungs but chose not to take them. Sometimes, pediatric surgeons will only choose adult lungs if their pediatric patients have run out of options and time because they need to be resized and are more difficult to transplant.

“We don’t know how many adult lungs might have been offered to that group, and how often those lungs were deemed unsuitable,” Mallory said, adding that he hopes OPTN doesn’t vote to remove the rule. “I think it was a good move by the UNOS board, and I hope they renew it.”

Sarah Murnaghan’s mother, Janet Murnaghan, said in a statement that the family is “thrilled” that the temporary rule change is being evaluated and could become more permanent in the future.

“We hope and pray that this change will come to fruition,” she wrote. “This certainly appears to be a very positive step toward that objective. “

Mallory said that although the Murnaghans have said the existing lung allocation policy is unfair and arbitrary, adult physicians initially thought giving pediatric preference for adolescent and child lungs was unfair to adults back in 2005, when the existing lung allocation rules were instated. But given that nearly 2,000 adult lung transplants happen annually, the 10 or so adult lungs that might go to children under this new rule would have a minimal effect on the adult population: “a drop in the bucket,” Mallory said.

“It might be a huge help to children who might be facing death without this gift,” Mallory said, adding that OPTN aims to be fair and has regular meetings to tweak rules to make them better.

“Nobody wants children, or anybody, to die on the waiting list.”