Menus Subscribe Search

Follow us


murnaghan

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

Sarah Versus the Data

• June 06, 2013 • 10:02 AM

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

When a child is deemed suitable for an adult organ transplant, why are they put at the end of the donation line?

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.

Michael Fitzgerald
Michael Fitzgerald is an associate editor at Pacific Standard. He has previously worked at The New Republic and Oxford American Magazine.

More From Michael Fitzgerald

A weekly roundup of the best of Pacific Standard and PSmag.com, delivered straight to your inbox.

Recent Posts

October 30 • 6:00 AM

Dreamers of the Carbon-Free Dream

Can California go full-renewable?


October 30 • 5:08 AM

We’re Not So Great at Rejecting Each Other

And it’s probably something we should work on.


October 30 • 4:00 AM

He’s Definitely a Liberal—Just Check Out His Brain Scan

New research finds political ideology can be easily determined by examining how one’s brain reacts to disgusting images.


October 29 • 4:00 PM

Should We Prosecute Climate Change Protesters Who Break the Law?

A conversation with Bristol County, Massachusetts, District Attorney Sam Sutter, who dropped steep charges against two climate change protesters.


October 29 • 2:23 PM

Innovation Geography: The Beginning of the End for Silicon Valley

Will a lack of affordable housing hinder the growth of creative start-ups?


October 29 • 2:00 PM

Trapped in the Tobacco Debt Trap

A refinance of Niagara County, New York’s tobacco bonds was good news—but for investors, not taxpayers.


October 29 • 12:00 PM

Purity and Self-Mutilation in Thailand

During the nine-day Phuket Vegetarian Festival, a group of chosen ones known as the mah song torture themselves in order to redirect bad luck and misfortune away from their communities and ensure a year of prosperity.


October 29 • 10:00 AM

Can Proposition 47 Solve California’s Problem With Mass Incarceration?

Reducing penalties for low-level felonies could be the next step in rolling back draconian sentencing laws and addressing the criminal justice system’s long legacy of racism.


October 29 • 9:00 AM

Chronic Fatigue Syndrome and the Brain

Neuroscientists find less—but potentially stronger—white matter in the brains of patients with CFS.


October 29 • 8:00 AM

America’s Bathrooms Are a Total Failure

No matter which American bathroom is crowned in this year’s America’s Best Restroom contest, it will still have a host of terrible flaws.



October 29 • 6:00 AM

Tell Us What You Really Think

In politics, are we always just looking out for No. 1?


October 29 • 4:00 AM

Racial Resentment Drives Tea Party Membership

New research finds a strong link between tea party membership and anti-black feelings.


October 28 • 4:00 PM

The New Health App on Apple’s iOS 8 Is Literally Dangerous

Design isn’t neutral. Design is a picture of inequality, of systems of power, and domination both subtle and not. Apple should know that.


October 28 • 2:00 PM

And You Thought Your Credit Card Debt Was Bad

In Niagara County, New York, leaders took on 40-year debt to pay for short-term stuff, a case study in the perverse incentives tobacco bonds create.



October 28 • 10:00 AM

How Valuable Is It to Cure a Disease?

It depends on the disease—for some, breast cancer and AIDS for example, non-curative therapy that can extend life a little or a lot is considered invaluable. For hepatitis C, it seems that society and the insurance industry have decided that curative therapy simply costs too much.


October 28 • 8:00 AM

Can We Read Our Way Out of Sadness?

How books can help save lives.



October 28 • 6:15 AM

Incumbents, Pray for Rain

Come next Tuesday, rain could push voters toward safer, more predictable candidates.


October 28 • 6:00 AM

Why Women Are Such a Minority in Elected Office

The obvious answers aren’t necessarily the most accurate. Here, five studies help clear up the gender disparity in politics.


October 28 • 4:00 AM

The Study of Science Leads to Leftward Leanings

Researchers report the scientific ethos tends to produce a mindset that favors liberal political positions.


October 28 • 2:00 AM

Who Funded That? The Names and Numbers Behind the Research in Our Latest Issue

This list includes studies cited in our pages that received funding from a source other than the researchers’ home institutions. Only principal or corresponding authors are listed.


October 27 • 4:00 PM

School Shootings: What’s Different About Europe?

There may be a lot of issues at play, but it’s undeniable that the ease of access to guns in the United States is a major contributing factor to our ongoing school shooting crisis.


October 27 • 2:00 PM

The Best Investigative Reporting on Campaign Finance Since 2012

From dark money to a mysterious super PAC donor, here are a few of the best investigations of money in politics since the last elections.


Follow us


We’re Not So Great at Rejecting Each Other

And it's probably something we should work on.

Chronic Fatigue Syndrome and the Brain

Neuroscientists find less—but potentially stronger—white matter in the brains of patients with CFS.

Incumbents, Pray for Rain

Come next Tuesday, rain could push voters toward safer, more predictable candidates.

Could Economics Benefit From Computer Science Thinking?

Computational complexity could offer new insight into old ideas in biology and, yes, even the dismal science.

Politicians Really Aren’t Better Decision Makers

Politicians took part in a classic choice experiment but failed to do better than the rest of us.

The Big One

One town, Champlain, New York, was the source of nearly half the scams targeting small businesses in the United States last year. November/December 2014

Copyright © 2014 by Pacific Standard and The Miller-McCune Center for Research, Media, and Public Policy. All Rights Reserved.