Menus Subscribe Search
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

July 24 • 5:00 AM

In Praise of Our Short Attention Spans

Maybe there’s a good reason why it seems like there’s been a decline in our our ability to concentrate for a prolonged period of time.


July 24 • 4:00 AM

How Stereotypes Take Shape

New research from Scotland finds they’re an unfortunate product of the way we process and share information.


July 23 • 4:00 PM

Who Doesn’t Like Atheists?

The Pew Research Center asked Americans of varying religious affiliations how they felt about each other.


July 23 • 2:00 PM

We Need to Start Tracking Patient Harm and Medical Mistakes Now

Top patient-safety experts call on Congress to step in and, among other steps, give the Centers for Disease Control and Prevention wider responsibility for measuring medical mistakes.


July 23 • 12:19 PM

How a CEO’s Fiery Battle Speeches Can Shape Ethical Behavior

CEO war speech might inspire ethical decisions internally and unethical ones among competing companies.


July 23 • 12:00 PM

Why Do We Love the ‘Kim Kardashian: Hollywood’ Game?

It’s easy enough to turn yourself into a virtual celebrity, complete with fame and mansions—but it will likely cost you.


July 23 • 11:49 AM

Modern Technology Still Doesn’t Protect Americans From Deadly Landslides

No landslide monitoring or warning systems are being used to protect vulnerable communities.


July 23 • 10:00 AM

Outing the Death-Drug Distributors

Calling all hackers: It’s time to go Assange on capital punishment.


July 23 • 8:00 AM

The Surprising Appeal of Products That Require Effort to Use

New research finds they enable consumers to re-establish a feeling that they’re in control of their lives.



July 23 • 6:00 AM

How the Other Half Lifts: What Your Workout Says About Your Social Class

Why can’t triathletes and weightlifters get along?


July 23 • 5:02 AM

Battle of the Public Intellectuals: Edward Glaeser vs. Richard Florida

On gentrification and housing costs.


July 23 • 4:00 AM

Our Fear of Immigrants

Why did a group of fourth graders rally in support of an undocumented classmate while the citizens of Murrieta, California, tried to stop immigrant children from entering their town?


July 22 • 4:00 PM

Can Meditation Really Slow Aging?

Is there real science in the spiritualism of meditation? Jo Marchant meets a Nobel Prize-winner who thinks so.



July 22 • 2:00 PM

The Alabama Judge Who Refuses to Let Desegregation Orders Go Ignored

A federal judge in Alabama says a local school board has failed to meet legal mandate to integrate.


July 22 • 12:00 PM

On the Destinations of Species

It’s almost always easier to cross international borders if you’re something other than human.


July 22 • 10:51 AM

The Link Between Carbs, Gut Microbes, and Colon Cancer

Reduced carb intake among mice protected them from colon cancer.


July 22 • 10:47 AM

Irrational Choice Theory: The LeBron James Migration From Miami to Cleveland

Return migrants to Cleveland have been coming home in large numbers for quite some time. It makes perfect sense.


July 22 • 9:32 AM

This Time, Scalia Was Right

President Obama’s recess appointments were wrong and, worse, dangerous.


July 22 • 8:00 AM

On Vegas Strip, Blackjack Rule Change Is Sleight of Hand

Casino operators are changing blackjack payouts to give the house an even greater advantage. Is this a sign that Vegas is on its way back from the recession, or that the Strip’s biggest players are trying to squeeze some more cash out of visitors before the well runs dry?


July 22 • 6:00 AM

Label Me Confused

How the words on a bag of food create more questions than answers.


July 22 • 5:07 AM

Doubly Victimized: The Shocking Prevalence of Violence Against Homeless Women

An especially vulnerable population is surveyed by researchers.


July 22 • 4:00 AM

New Evidence That Blacks Are Aging Faster Than Whites

A large study finds American blacks are, biologically, three years older than their white chronological counterparts.



Follow us


Subscribe Now

How a CEO’s Fiery Battle Speeches Can Shape Ethical Behavior

CEO war speech might inspire ethical decisions internally and unethical ones among competing companies.

Modern Technology Still Doesn’t Protect Americans From Deadly Landslides

No landslide monitoring or warning systems are being used to protect vulnerable communities.

The Link Between Carbs, Gut Microbes, and Colon Cancer

Reduced carb intake among mice protected them from colon cancer.

The New Weapon Against Disease-Spreading Insects Is Big Data

Computer models that pinpoint the likely locations of mosquitoes and tsetse flies are helping officials target vector control efforts.

People Are Clueless About Placebos

Doctors know that sometimes the best medicine is no medicine at all. But how do patients feel about getting duped into recovery?

The Big One

Today, the United States produces less than two percent of the clothing purchased by Americans. In 1990, it produced nearly 50 percent. July/August 2014

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