Two people involved in the donor-organ process criticized a Pennsylvania judge Friday who intervened to make sure a child received a set of donated lungs.
Sarah Murnaghan, a 10-year-old girl with cystic fibrosis, is recovering from a lung transplant she was only able to get because her parents challenged the current transplant rules in court. Previously, children under 12 were placed on the bottom of the adult lung transplant waiting list.
Robert Veatch, an ethics professor, and Susan Mau Larson, who works for an agency that manages organ donations in the Midwest, said they're concerned the judge's order could undermine the public's trust in the fairness of organ donation and transplant.
"The debate this week is part of a larger debate about how to have a fair, equitable and beneficial allocation of the scarce organs that are available in the United States," Veatch said on The Daily Circuit. "It turns out to be a very complicated set of issues that are raised in the Murnaghan case. Intuitively, it seems like it was wrong to put a child at the end of the list for an adult organ, but there really are many factors that go into the allocation and the Murnaghan case makes explicit and specific the problems we face in the allocation of any organs."
Larson said the organ-allocation procedures "are set up with a very extensive review by medical professionals, donations and transplant professionals, lawyers, ethicists, community members. And they are looking at a variety of factors to determine what is the best allocation system. So in the case of lungs, as we're talking about here ... lungs have a size requirement, and so that is part of the decision ... to make sure they are the exact right fit for the recipient in need."
She pointed out that the organ donation system has "a whole database of people waiting. And every time a donor is available ... a list is generated from that database that incorporates all of those factors and the policies that are in place. For a child like this young girl in Pennsylvania, she had priority when there was a pediatric donor. She had less priority when there was an adult donor."
Veatch added that "it makes very good sense that we take age into account, particularly for lungs, because the lung has to fit into a confined space in the chest.
"If we just ran a single list, we'd end up with a child getting an adult lung, and the lung would have to be cut down," he said. "That makes the surgery much more complicated and generally not as successful. On the other hand, it would be bizarre if an adult were assigned a lung from a child who was a donor, and you'd have a very small lung for an adult."
He was critical of the notion that Sarah Murnaghan was being treated unfairly before the judge ordered that she be made eligible for adult lungs.
"I really don't buy it," he said. "Adding a child to the adult list, while continuing to keep her as first priority for children, is going to make the system much less efficient."
"We can understand why every family would want to do everything possible to get an organ for their loved one," he said. "But if judges intervene into this system, we're in effect doing an end run around a carefully thought-out and balanced formulation of a policy."
Current procedure takes into account a number of factors, Veatch and Larson explained, among them blood type, length of time spent waiting and degree of sickness. "A judge doesn't have access to all of these considerations," Veatch said. "What we're afraid of is that if one person is moved to the top of the list by a judge, why wouldn't everybody else on the list who has the means also get themselves a lawyer and try to find a judge who would push them to the top of the list?
"In the case of lungs, the same judge has already added a second youngster to the adult lung list, and I don't know why all 1,700 people on the lung waiting list, adults and children, wouldn't try to game the system and get their case moved to the top of the list. It will really cause chaos if judges intervene to make an argument for one specific patient without taking into account all of the variables."
"Many people on the list just don't have the means or the knowledge to pursue this," he said. "Many people might find it not worthwhile. But those who are most skilled and most knowledgeable, who have the most energy to fight for an organ, could pursue this. And hiring a good legal team probably could get many of those people some advantage. It would be a disaster if every person on that list has to lawyer up, as the phrase goes."
Larson said, " This system is set up to be fair and equitable, and it relies on the trust of the public ... we don't like to see anything that might undermine that trust or raise questions of equity, because there is a system in place that is equitable."
While all of this is going on, she said, "18 people die every day because they don't receive the transplant they need."
LEARN MORE ABOUT ORGAN TRANSPLANTS:
• Lung Transplants Controversial for Cystic Fibrosis Patients
"Lung transplants in cystic fibrosis patients are controversial because some studies suggest the procedure does not prolong life or help patients live better on a day-to-day basis, according to the Mayo Clinic." (LiveScience)
• The Need is Real
"Each day, an average of 79 people receive organ transplants. However, an average of 18 people die each day waiting for transplants that can't take place because of the shortage of donated organs." (U.S. Department of Health and Human Services)
• The transplant waiting list
Up-to-date numbers on people waiting for transplants in the United States. (Organ Procurement and Transplantation Network)
• Cheney's heart: Should age be a factor in organ transplants?
"The bigger question raised by Cheney's transplant was whether his age should have been taken into account when he received the heart — should younger patients on the list be first in line?" (The Daily Circuit)
Watch Appeals Process Added for Kids Waiting for Lung Transplants on PBS. See more from PBS NewsHour.