Changing Organ Transplant Rules Might Not Actually Help Children

Photograph by Brendan Smialowski/AFP via Getty Images

The same federal judge who ruled that 10-year-old Sarah Murnaghan, who’s suffering from cystic fibrosis, can be placed on an organ waiting list for patients older than 12 has now ordered the government to make the same exception to its organ transplant rules for another child, 11-year-old Javier Acosta, who’s also dying of CF and is in the same Philadelphia hospital as Murnaghan.

Why is there a special organ waiting list for children under 12, anyway?

Mildred Solomon, president of the Hastings Center, which advocates for transplant patients, and a former member of a U.S. Department of Health and Human Services advisory committee, tells me the purpose of having a pediatric list is to streamline the process of obtaining child-size organs, which are even harder to come by than those of adults. The under-12 rule, set by the nonprofit Organ Procurement and Transplantation Network (OPTN), which handles transplant policy for the federal government, dates to 2005; it arose out of concerns that children, who previously got placed on the same list as adults, were at a disadvantage. Because the priority for transplants had been based only on wait times, adults were sometimes getting child-size organs—which weren’t always the best match—simply because they had waited longer than children who were further down on the list.

Dr. Stuart Sweet, a physician at St. Louis Children’s Hospital and an OPTN board member, says the policy works. Since the separate waiting lists were put in place, more children have received right-size organs than under the prior setup. “The system did what it intended to do,” he says in an e-mail, “which was direct appropriate-size organs to children.”

Advocates for patients in need of transplants aren’t cheering the court’s intervention. “It’s very unusual for the courts to be reaching down into a decision of this kind, that really should be made by doctors working with parents,” Solomon says. “It could undermine the whole system … that is extremely fair … [and] well thought through.”

The system is now under review. The OPTN yesterday announced it will look at the under-12 policy and decide whether it needs to be revised.

During a congressional hearing this week, before the order in Murnaghan’s case came down, HHS Secretary Kathleen Sebelius had said she’d prefer to let doctors decide what to do. Under pressure from Republican lawmakers in Pennsylvania who’ve taken up Murnaghan’s cause, Sebelius said she couldn’t make an exception for Murnaghan because that would be unfair to other children in the same hospital (such as Acosta) who are also awaiting transplants. “The way that this is being framed in the media is as though there is some sort of discrimination against kids,” Solomon says. “That’s ironic, because this whole policy was put in place in part to be responsive to the special requirements of younger children.”

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