Sarah Murnaghan's spirit can be summed up by her personalized Monopoly character: a three-legged silver pig that can stand on its own.
"Everybody sort of expects her to decline here, and she does, but she fights back every time," says her mother, Janet.
Sarah, who has cystic fibrosis, has a reason to keep fighting: She's another step closer to getting a lung transplant. Sarah has been waiting for a year and a half, and doctors say she could die soon without a transplant.
The current system puts children at the bottom of the list for adult lungs. While they are eligible for child donor lungs, those are harder to come by. Wednesday, Judge Michael Baylson ruled that Sarah could be moved up on the adult list, and considered for a new set of adults lungs based on her need, not her age.
Sarah's family has new hope. Janet Murnaghan says Sarah's heart is under a lot of strain, but she's still a good transplant candidate. Now they're waiting for a match.
The case has triggered a swell of emotions, along with a wave of arguments criticizing and defending the current organ allocation system.
Janet Murnaghan says her family's legal fight for Sarah is one path toward revising the transplant selection process. "We're not fighting for just Sarah," she tells Tess Vigeland, guest host of weekends on All Things Considered. "There is a system here that is letting children die. The system needs to be fairer."
Murnaghan says adults are favored over children, even if that wasn't the original intention. She believes there shouldn't be an age cutoff at all — that organs should be given based on doctors' recommendations.
So how are those decisions made?
The first thing to note is that there just aren't enough organs available. More than 100,000 people are on the list for a new organ, according to the Organ Procurement and Transplantation Network, a nonprofit contracted by the federal government to regulate transplants in the U.S. And 18 die each day while still waiting.
Given the constraints, selecting an organ recipient comes down to priorities. Bioethicist Art Caplan says there are a number of factors that determine where you land on the waitlist, including: blood type, immune system, who's the sickest and who has the greatest need.
"Among that group, the system then starts to say, 'Who's going to do best? Who will survive with the greatest chance of living and living long? And then beyond that, you're starting to look at things like geography [to find out how far the organ needs to travel]," he says.
The under-12 rule evolved, Caplan says, from the medical complications that come with putting an adult organ in a child.
The Financial Factor
Caplan says, generally, the system "does a good job in trying to let medical factors and objective factors drive the distribution of organs.
"What isn't a good situation is admission to the transplant centers. One of the first tests that everybody does is a very thorough wallet biopsy," he says. "So the ability to pay counts. ... It's a major driver in access to transplants."
Dr. John Roberts, chairman of the transplant network's executive committee, disagrees with Caplan's assessment.
"I think there are people who have a harder time getting referred for a transplant, but I don't think it's necessarily an insurance, 'wallet biopsy' approach," he says.
He says Medicaid will cover transplantation for low-income patients, but not in every state. Transplants easily run hundreds of thousands of dollars, some even hitting seven figures.
Roberts says it's the post-surgery costs that can create the biggest financial hurdle for patients. "The medications are lifelong, and they are expensive," he says.
'No Great Solution'
As a result of the judge's decision, the allocation system is under review. Roberts says that doesn't mean change is inevitable, but he certainly has received a lot of feedback.
"I received I think almost 50,000 emails now from people that are concerned about whether or not we are giving children high enough priority for all organs," he says. "And that's sort of a societal decision. There's no great solution here."
What Roberts is concerned about is having transplant allocation decided by political or judicial systems working on behalf of specific children who have access to lawyers or the media. "On some level, we can't make a decision child by child," he says.
So far, the federal judge in Pennsylvania has ruled in favor of two children, putting both on the older-than-12 waitlist for lung transplants.
"I surely understand the judge," Roberts says. "He doesn't want to make a decision that the [organ transplant network] has to make of: this child is in a situation with a lot of other children, and how that is going to affect the other children. He's making a decision for the child that's in front of him."
'Just A Chance'
Now, Janet Murnaghan is looking at the child in front of her. She's not sure "optimistic" is the right word to describe how her family's feeling.
"I don't know what's going to happen in 10 days, and we still have a kid who's really seriously ill. And we have a kid who may not make it 10 days. I don't know," she says.
"I would just say, for the first time in a little while here, we have hope that she has a chance. Just a chance."
TESS VIGELAND, HOST:
It's WEEKENDS on ALL THINGS CONSIDERED from NPR News. I'm Tess Vigeland.
Sarah Murnaghan is a little girl with spunk and spirit in spades, but what she really needs is a new set of lungs. The 10-year-old was born with cystic fibrosis, and her lungs have deteriorated to the point doctors say she could die soon without a transplant.
JANET MURNAGHAN: Sarah is fighting, and that is just where the essence of Sarah. She's not giving up.
VIGELAND: That's Janet Murnaghan, Sarah's mom who we'll hear more from in a minute. But a year-and-a-half wait on the transplant list has gotten Sarah nowhere, and she may not have much time left. This week, a federal judge ordered Sarah be moved up on the list. That is our cover story today: the fairness of organ transplants.
Part of the reason Sarah has waited so long for a transplant, despite being so sick, is the way the lung allocation system is set up in this country. Children younger than 12 are at the bottom of the list for adult donor lungs. And pediatric donor lungs are much harder to come by.
ART CAPLAN: The under-12 rule was built over time because adult organs don't fit well into children.
VIGELAND: That's bioethicist Art Caplan. We'll hear more from him later. Adult lungs may have to be trimmed down to fit a child. It's a risky enough procedure that only a handful have been performed in this country. But Sarah's doctors say she's a candidate for it. So Sarah's mom and dad launched an impassioned campaign to change the under-12 rule. And this week, a federal judge agreed, ordering the Department of Health and Human Services to set aside the rule until another hearing can be held in Sarah's case.
I spoke with Sarah's mom, Janet Murnaghan, as she held vigil at The Children's Hospital of Philadelphia. That's where she spends pretty much all of her time, never far from her daughter, even sleeping in the hospital bed with her. It hasn't been easy.
MURNAGHAN: We have had a really rough couple of days. Her heart is, you know, under a lot of strain because of the lung disease. She's still a great candidate for transplant, but, you know, her heart is real strained.
VIGELAND: Tell us a little bit more about your daughter. How would you describe her?
MURNAGHAN: She's a fun kid. We spend a lot of time here doing arts and crafts and playing games. She loves the game Monopoly, and she will destroy anybody who plays Monopoly with her.
VIGELAND: What character does she use?
MURNAGHAN: Oh, you know what, she has her own character. It's a three-legged pig.
MURNAGHAN: It's really cool. It's this little silver pig that's supposed to bring you luck and you'd expect it to fall over on three legs, but it stands up. And it's sort of the essence of us over here. You know, everybody sort of expects her to decline here, but - and she does, but she fights back every time. You know, I'm just not sure how much longer she can continue that fight, but she certainly has the spirit to do it.
VIGELAND: Sarah's story has certainly elicited quite the outpouring of support nationwide. Why do you think that Sarah has struck such a chord?
MURNAGHAN: We're not fighting for just Sarah. There is a system here that is letting children die. The system needs to be fairer.
VIGELAND: Where do you find the unfairness?
MURNAGHAN: It's a system that preferences adults. And I'm sure that wasn't the intention in the beginning, but that's the reality of how the system is working. It's just not moral the way this system is run. It's a tragedy any time somebody dies waiting for organs. But the system is putting one group at an advantage and one group at a disadvantage.
VIGELAND: Do you think that there should be any age cutoff for a child receiving an adult lung?
MURNAGHAN: No. I think it should be a doctor's decision. Doctors aren't going to transplant organs that aren't going to be successful. They're not going to put a kid on an operating table in a situation that they know is going to make the child die.
VIGELAND: Janet Murnaghan. More than 100,000 people are on the list for a new organ, according to the Organ Procurement and Transplantation Network or OPTN. But 18 die each day while still waiting.
Dr. John Roberts is president of the OPTN. It's a nonprofit under contract with the federal government that regulates transplants in this country. I asked him about the fairness of organ donation. He says to think about it as a game of musical chairs.
DR. JOHN ROBERTS: And that's always when you have not enough chairs and too many people. And that's really what our problem is, and we have to decide who's in the highest priority to get a chair.
VIGELAND: Many factors go into deciding who gets a chair. Art Caplan is a bioethicist at the New York University Langone Medical Center. He says as doctors work on making the best possible match, they look at a person's biology, blood type, age, immune system.
CAPLAN: Then we look at who's sickest, who needs the organ the most. Among that group, the system then starts to say, who's going to do best? Who will survive with the greatest chance of living and living long? And then beyond that, you're starting to look at things like geography. If you could use an organ locally, you're probably not going to ship it hundreds of miles away somewhere else.
VIGELAND: And talk to us about the under-12 rule, which is what is coming into play here with the case of Sarah Murnaghan.
CAPLAN: The under-12 rule was built over time because adult organs don't fit well into children. You're usually having to either use a piece of a lung to do it or you're kind of cramming the thing into a smaller space. And so it isn't that surgeons and transplant people said we just don't care about children and we'll put them at the end of the list. It was built on the idea that their outcomes weren't as good with adult donor lungs. They did better in adult recipients.
VIGELAND: A federal judge has now intervened in this case. Can you remember a case where this has happened before?
CAPLAN: I cannot. I have no recollection. I've been looking at transplant ethics issues for nearly 30 years where an outside party said, we don't like the rules that we have seen created for the distribution of organs. We're going to jump in and overrule what's been in place.
VIGELAND: Why do you think the judge chose to intercede?
CAPLAN: There's politics. Certainly, people are pressing to say this little girl has a right to live and please, judge, help her. At the same time when the judge does it, it's serious business because we've had a system for many, many decades that has, without much controversy, tried to allocate fairly the scarce supply of organs. And this is now a situation where the judge has said, I don't trust those rules.
It could open the door to other people saying, I want my situation addressed, too, because, I think, I'm being discriminated against or I don't agree with how the rules are treating me in terms of giving me priority.
VIGELAND: Well, and clearly, when you're deciding to make an exception, you know, this child's potential gain would then be someone else's loss.
CAPLAN: Ethically, there is no avoiding the R word. I know politically in America, it's hard to talk about rationing. In transplant, the reality is rationing. We don't have enough organs. People should sign their donor cards if they're listening and thinking what could I do. But the way things are now, adding someone to the list, pushing Sarah into the pool pushes someone else off.
VIGELAND: Do we have the best possible system at this point for transplants?
CAPLAN: It generally does a good job in trying to let medical factors and objective factors drive the distribution of organs. What isn't a good situation is admission to the transplant centers. One of the first tests that everybody does is a very thorough wallet biopsy. They're going to see if I can pay, so the ability to pay counts.
VIGELAND: I was surprised to hear that. So I asked bioethicist Art Caplan just how important being able to pay really is.
CAPLAN: It's a major driver in access to transplants.
ROBERTS: I disagree with that completely. I think there are people that have harder time getting referred for a transplant, but I don't think that it's necessarily an insurance wallet biopsy approach.
VIGELAND: Once again, that's Dr. John Roberts, president of the OPTN. He says Medicaid will cover transplantation for low-income patients. But - and here's a big catch - not in every state. So location can determine how big an individual's bill will be. And transplants easily run hundreds of thousands of dollars, some even hitting seven figures. And Dr. Roberts says it's the post-surgery costs that can create the biggest financial hurdle for patients.
ROBERTS: One of the things that we need to do is try to figure out, all right, how can we get long-term immunosuppressive medication for the patients that need it? Currently, you know, for kidney transplantation, Medicare limits the length of time that Medicare will pay for their drugs to three years.
VIGELAND: Meanwhile, when it comes to the lung allocation policy, the OPTN may be poised to make a change.
ROBERTS: We are going to review the policy. We may not decide to make a change. A judge has made a decision that this child should have access to adult organs. And now the same judge has made a decision that a second child should have access. So the judge really has decided that, you know, these children should have chairs. But on some level, we can't make a decision child by child.
You know, over the course of this, I received, I think, almost 50,000 emails now from people that are concerned about, you know, whether or not we are giving children a high enough priority for all organs. And that's sort of a societal decision. There's no great solution here.
VIGELAND: Given that a judge has now stepped in on two of these cases, are you concerned at all about these decisions being taken away from medical experts?
ROBERTS: I am concerned that a judicial and a political process seems to be evolving to help specific children. And, you know, that I don't think is fair. You know, there's children that don't have, you know, access to lawyers or the media access that some other children do. And suddenly, you know, now you're saving chairs for those children that the judge thinks that a chair should be saved for.
And I surely understand, you know, the judge. And he doesn't want to make a decision that the OPTN has to make of, you know, this child is in a situation with a lot of other children and how that is going to affect the other children. He's making a decision for the child that's in front of him.
VIGELAND: Dr. John Roberts, president of the Organ Procurement and Transplantation Network.
With Sarah now being considered for new adult lungs based on her need, not her age, I asked Janet Murnaghan if she's optimistic about her daughter's prognosis.
MURNAGHAN: I would say that we have hope. You know, I don't know what's going to happen in 10 days, and we still have a kid who's really seriously ill. And we have a kid who may not make it 10 days. I don't know. So I don't know that optimistic is the word I would use. I would just say for the first time in a little while here, we have hope that she has a chance. Just a chance.
(SOUNDBITE OF MUSIC)
VIGELAND: The OPTN meets Monday to review the lung allocation policy. The next court date in Sarah's case is set for Friday. This is NPR News. Transcript provided by NPR, Copyright NPR.