Sarah Murnaghan case ruffles feathers but exposes problems

Amid ongoing ethical debate over the parental tactics that led to a lung transplant for 11-year-old Sarah Murnaghan, many experts are acknowledging a crucial point:

Janet and Francis Murnaghan were right. National lung-transplant allocation rules have unfairly denied children under 12 the chance to get lungs from adult donors.

In an editorial last month in New England Journal, two such experts credited the parents with calling attention to the inequity - but not before criticizing them for waging a media and legal campaign to save Sarah.

"Appeals to list children for adult organs have merit," wrote lead author Keren Ladin, a Tufts University health policy researcher who has studied racial disparities in kidney transplants. "Designating age 12 as the cutoff arbitrarily disadvantages some children because age is a poor proxy for size."

Few youngsters need lung transplants (only 14 children ages 6 to 10 were waiting as of Aug. 23), and most, like Sarah, have cystic fibrosis, Ladin noted.

Making a small number of children eligible for adult lungs would probably have little effect on wait-listed adults, so "we should err on the side of inclusion, not exclusion from access to a broader supply of lifesaving organs," Ladin concluded.

Janet Murnaghan said much the same thing on Tuesday, when Sarah went home to Newtown Square after more than six months in Children's Hospital of Philadelphia.

"We feel very passionate about [changing] the Under 12 rule," Janet said. "Organs should be matched with the sickest person and best match."

The Under 12 rule requires that all wait-listed adults, no matter how sick, be offered adult donor lungs before children under 12 can be considered - even if those children are in dire need. The Murnaghans argued that since far more adult than pediatric lungs are donated, the policy amounted to age discrimination.

In June, a federal judge agreed and ordered the rule suspended. Days later, the Organ Procurement and Transplantation Network (OPTN), which sets national transplant policy, voted on a temporary change: Transplant centers could request, on a case-by-case basis, that children under 12 be considered for lungs from older donors based on medical urgency.

The implications of the age cutoff were not clear to the Murnaghans until May, 18 months after Sarah went on the pediatric waiting list - and almost three months after she was admitted, critically ill, to Children's Hospital.

"It wasn't explained to us until far into the process," Janet said Tuesday. "We did research and we asked questions. But it wasn't until the end of May that we realized" the restriction could be a death sentence for Sarah.

Even then, the parents tried to work within the system. Through Sarah's doctors, they appealed to the national Lung Review Board, an expert panel that can make exceptions. They cited studies that show adult lungs can be cut down to work well for children.

When that appeal failed, they turned to the U.S. Department of Health and Human Services.

By then, the Murnaghans had hired a lawyer. Janet, a former public relations professional, also reached out to the media and politicians.

It is for going public - and using tactics as American as apple pie - that the Murnaghans have been lambasted by ethicists and transplant authorities.

"Appeals waged through federal courts and the court of public opinion undermine fairness . . . exacerbating disparities and discrimination," Ladin wrote in the editorial.

"We cannot undo the dangerous precedents set by the judiciary as a result of this case," St. Louis pediatric lung transplant specialist Stuart Sweet said in June, "but we can take steps to make sure that the next time this question arises, the case can be heard in a more appropriate venue."

He then led the OPTN executive committee, on which he sits, in approving the temporary change that allows case-by-case prioritization of children for adult lungs. An expert panel - not unlike the Lung Review Board - decides the cases.

None of the six children who have so far requested prioritization has been refused, according to an OPTN spokeswoman.

Ironically, the Murnaghans discovered that the Under 12 rule was one of the changes made in 2005 to improve fairness and reduce deaths of wait-listed patients. A scoring system was created to weigh medical urgency and likelihood of post-lung-transplant survival. Previously, lungs were allocated based strictly according to time on the list, so someone with stable emphysema could get lungs before an end-stage cystic fibrosis patient.

However, children under 12 were not given such scores, just classified as "priority 1" or "priority 2." This effectively precluded them from being placed on the adult waiting list because there was no mechanism for ranking them with adults.

Why weren't children scored? Because the OPTN didn't have enough historical data to develop and validate a pediatric model.

Now that the OPTN is considering permanent changes to the Under 12 rule, children should be given scores, scanty data notwithstanding, Ladin argued in the editorial. Then, if they are big enough, they should be put on the adult and adolescent wait lists, as well as the pediatric list.

"We believe that the organ-allocation process is fundamentally fair, in part because of procedures in place to revise and modify allocation," Ladin wrote.

And, perhaps, because of indomitable parents like the Murnaghans.

Contact Marie McCullough at 215-854-2720 or mmcullough@phillynews.com.