Lung transplant candidates older than 12 are assigned a lung allocation score, or LAS, based on a complex mathematical formula that includes the patient's age and size. For transplant patients younger than 12 -- of which there are about 20 nationally at any given time compared with about 1,600 adults -- the LAS is not used because there isn’t enough data to prove that it can determine the sickest patients who would also live the longest. Instead, patients are broken into "priority 1" and "priority 2." It's this difference that has been called discriminatory in court.
“It wasn’t like they threw a dart at the board and came up with number 12 and said here’s the number,” Kurland said. “That’s not how it was done at all.”
Children get priority for lungs donated from children younger than 12, but they have to wait for children between 12 and 17 to decline lungs donated from 12- to 17-year-olds before they get a chance at them.
Lungs donated by anyone older than 18 are offered to all candidates older than 12, depending on their LAS. Only if all local matching candidates 12 and older decline the adult lungs can they be offered to children within 500 miles of the hospital where the lungs were harvested.
Although the Murnaghan case didn’t change the rules for all children under 12, it created a mechanism for the Organ Procurement and Transplantation Network, or OPTN, which is under contract with the federal government to manage the organ transplant waiting list and allocation process, to grant exceptions for under-12-year-olds on a case-by-case basis.
The Facebook Group
The Facebook group Janet Murnaghan wanted taken down, “Discussing Lung Transplantation and Sarah Murnaghan,” debates whether Sarah should have gotten the adult lung transplant and has questioned whether suing was fair to the other patients on the organ transplant waiting list. They also discuss other transplant cases as well as technological and ethical issues surrounding transplants and recovery.
But the group also refers to Janet Murnaghan’s group of supporters as “her cult” and says the happy ending story she’s told the media isn’t the truth. It pays close attention to reports about Sarah’s health and scrutinizes her appearances to show that she isn’t recovering as quickly as other children who have received lung transplants from child donors.
In one post the administrator suggested Sarah had two unacknowledged seizures during an interview with Fox News. In another, the administrator speculated that Sarah was in “intense pain” and would probably have a tracheostomy tube in her neck for the rest of her life.
“We have a healthy criticism of the lawsuit the Murnaghan family brought against the U.S. government; we believe their complaint was unmerited and erodes the foundation of public trust in the way scarce organs are allocated to recipients,” the Facebook page’s administrator told ABCNews.com on condition of anonymity to avoid having her family drawn into the controversy surrounding it. “The sad fact is not everyone who needs an organ will get an organ. Transplant medicine is rationed medicine because not enough organs are donated each year to help those in need.”
Janet Murnaghan has insisted she did not want to stifle free speech, but asked for help taking the page down because she wants to protect her daughter. In a previous post asking supporters to help report the page, she said people on it were “wishing [her] child death.”