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Sarah Versus the Data

When a child is deemed suitable for an adult organ transplant, why are they put at the end of the donation line?
Sarah Murnaghan, 10, needs a lung transplant. (PHOTO: COURTESY MURNAGHAN FAMILY)

Sarah Murnaghan, 10, needs a lung transplant. (PHOTO: COURTESY MURNAGHAN FAMILY)

Ten-year-old Sarah Murnaghan is in the end stages of a lifelong battle against cystic fibrosis. Her family says that she has only weeks to live if she doesn’t receive a partial lung transplant. If successful, the transplant could effectively cure her condition, speculated one lung doctor (not involved in Sarah’s care) that spoke to ABC News.  But the medical establishment’s rules and legal and ethical standards seem to be delaying, and maybe preventing, the Pennsylvania girl from getting her transplant. Now the case has made its way to Washington, D.C., with a political dynamic reminiscent of the Terry Schiavo case.

At the crux of this case: the fact that there just aren't too many child-sized lungs available for transplants. The collaborative of non-profits and government agencies that administer organ donations dictates that anyone under the age of 12 goes on a waiting list for the small number of child lungs that become available. This list is separate from the list for adolescents and adults who can seek a transplant from a larger pool of older donors. In the rare case where a child’s medical circumstances would allow for a safe transplant from an adult, the child will be placed at the bottom of the adult list—even if their condition is worse than those above them.

Sarah’s condition is dire, and tragic. But the medical community knows a lot more about how much everyone else ahead of her will benefit from such a transplant.

Yesterday, Sarah’s family sued (PDF) the Department of Health and Human Services in the U.S. District Court to prevent the rule from being applied in this case, allowing her to move up the adult list. Judge Michael Baylson, in eastern Pennsylvania, quickly complied, and, according to CNN, “Ruled in favor of a 10-day restraining order that blocks U.S. Health and Human Services Secretary Kathleen Sebelius from applying a policy keeping children younger than 12 from being prioritized for available adult lung transplants, the judge's clerk said.”

What hasn’t been made clear yet: Why, in these rare cases when a child is deemed suitable for an adult organ, are they automatically put in the back of the adult line?

Before 2005, organ donations worked more like the checkout line at the supermarket—first come, first serve ... with some exceptions. Ideally, of course, such a system would account for the urgency of a patient’s condition, as well as the degree of amelioration a transplant could offer, regardless of age. So the medical board that administers the national transplant network voted to set up just such a system in 2004, and it’s the one they still use today. But they also set up the two-tiered system that segregated those under 12.

Today patients over 12 receive an “allocation score”—the higher your score, the higher on the list you go. From the transplant network’s website, the score considers: “lab values, test results, and disease diagnosis,” which are then compared to data from past transplants, and the health benefits a patient would likely gain from a new organ. (Here is the calculator for a “Lung Allocation Score.”)

Sarah’s family says that she has an LAS over 78, which would normally place her as the highest priority organ recipient for her blood type in her region. But the number 78 doesn’t mean all that much medically for someone under 12—because there have not been enough transplants on kids under 12 since the private non-profit United Network for Organ Sharing, which administers the national Organ Procurement and Transplantation Network with the guidance of scores of doctors and statisticians, instituted the current system.

As it turns out, there is little statistically significant meaning to Sarah’s allocation score because there just haven’t been enough recorded similar circumstances to judge how Sarah would do with an adult lung transplant.

According to the chart here, there have only been 377 total lung transplants for kids 10 and under, while the over-11 age group has received more than 25,000. And so the models that the Scientific Registry of Transplant Recipients builds and updates for the national transplant system, which tells us who will likely benefit most from an organ donation and who won’t, just can’t tell us if Sarah is more deserving—based on need—than the adults that are on the list ahead of her.

Sarah’s condition is dire, and tragic. But the medical community knows a lot more about how much everyone else ahead of her will benefit from such a transplant. This is the sad conundrum that many reports seem to be missing: We don’t hope to have more data, because that would mean more children in need. But we need the data, because that would help society identify the patients most in need—no matter their age.