The parents of a 10-year-old Pennsylvania girl who has waited 18 months for a lung transplant are waging a fierce fight to change an organ allocation regulation that they say is keeping their desperately ill daughter from the life-saving treatment she needs.
But organ transplant experts say there’s no way to bend the rules for Sarah Murnaghan in a system designed to guarantee fairness to all patients -- not just one.
“The allocation system is designed to be impervious to a single person’s case,” said Dr. Stuart Sweet, director of the pediatric lung transplant program at Washington University in St. Louis, who helped write the lung transplant guidelines used by the Organ Procurement and Transplantation Network, OPTN.
Sarah Murnaghan suffers from end-stage cystic fibrosis and may have mere weeks to live. Her parents, Fran and Janet Murnaghan of Newtown Square, Penn., say their little girl is being discriminated against by a system that prevents children younger than 12 from receiving adult organs until after they’re offered to all adults and teens on the transplant list, even if the kids are sicker.
“We are not asking for preference for Sarah, we are asking for equality,” said Janet Murnaghan. “We strongly believe Sarah should be triaged based on the severity of her illness, not her age.”
Sarah, they say, is more gravely ill than many of the 214 adults and adolescents in her region who would be in line to get lungs first. To draw attention to Sarah's plight, her parents launched an all-out public relations blitz over the Memorial Day weekend, papering local and national media with images and stories.
So far, they’ve received the backing of an online petition with more than 35,000 signatures and the attention of U.S. Rep. Patrick Meehan, who has demanded that Health and Human Services Secretary Kathleen Sebelius intervene in the case to “address this tragic unfairness.” Meehan urged Sebelius to give Sarah “a chance at life and an adult lung from the next available donor.”
Experts with OPTN say that there’s no way to alter quickly the allocation system that has different rules for children ages 11 and younger and patients older than 12. And they add that any exceptions would raise ethical issues about the process.
“An organ that goes to one patient is an organ that doesn’t go to someone else,” said Sweet.
Nationwide, nearly 1,700 people are waiting for lung transplants, including 31 children younger than age 10, according to OPTN data. Last year, 224 people died waiting for lung transplants, including eight children younger than 10.
Until 2005, lungs for transplant in the United States were offered on a first-come, first-served basis. But that year, experts devised a new system that uses a 100-point lung allocation score – or LAS – that ranks severity of illness. Under that plan, the sickest patients get transplants first.
Children younger than 12, however, do not receive LAS scores and are not part of that allocation system, Sweet said. Under the rules, they’re classified according to two categories of illness, priority one being the sickest. Kids are offered organs from donors of similar size and age before those organs are offered to older patients. That’s because children have different biological needs than teens and adults, and issues such as size and lung capacity have to be considered, Sweet said.
There are far fewer pediatric organ donors than adults in the U.S. everyone agrees. Of the 1,708 deceased lung donors in 2012, only 20 were younger than 10, the data show.
Sarah, who was diagnosed with cystic fibrosis as a toddler, has been on the transplant list since 2011. But it was only last week that her parents realized that she wasn’t eligible for adult organs until they'd been offered to everyone on that list, said Sharon Rudduck, Janet Murnaghan’s sister.
“It comes as a shock to most patients that that’s how this works,” she said. “It’s hard to understand that the kids are at the back of the line.”
Sarah has been on supplemental oxygen at Children’s Hospital of Philadelphia for months. On Tuesday her parents were discussing using ECMO, or extracorporeal membrane oxygenation, which routes blood through a machine to receive oxygen. After starting ECMO, a patient may have three to five weeks to live if a transplant is not found, Ruddock said.
The situation raises basic questions of fairness and priorities, said Art Caplan, director of the division of medical ethics and New York Langone Medical Center.
“Lungs for transplant are exceedingly scarce,” he said. “We’re talking about the scarcest of scarce resources.”
Transplanting an adult lung into a child is difficult and can jeopardize the outcome, he said. On the other hand, a successful transplant into a child can lead to many more years of life than an adult.
There’s also this: Adult lung transplant recipients are frequently people who need transplants because of what Caplan called “bad behavior,” including smoking.
Children should get priority partly because they’re “non-culpable,” Caplan says, but also because he believes that most donors would want their organs to go to kids.
“I think we should go back and revisit the system and I think we should give more weight to kids,” he said.
Sweet and others say they’re not opposed to revisiting the allocation system, but that it would have to be considered in light of overall need -- and it would have to be vetted by a process that can take months.
That will be too late for Sarah, who is getting sicker by the day, the child’s relatives say.
“If they can’t change the policy fast, they can make an exception,” Ruddock said. “We want all the children who are going to die while they make this policy change to get an exception.”
While comments on an online petition can't change allocation policy, they can put pressure on the system run under contract with Department of Health and Human Services by the United Network for Organ Sharing.
"They're a government agency that's directed by the government," she said."The U.S. people can make a change. Public opinion matters."