Michael Winter and Hoai-Tran Bui, USA TODAY 11:44 p.m. EDT June 23, 2014
(Photo: Matt Rourke, AP)
A year after a dying 10-year-old Pennsylvania girl received controversial adult-lung transplants, exceptions for certain children younger than 12 were made permanent Monday.
The Organ Procurement and Transplantation Network, which manages the national waiting list and matches donors, approved the change for “a very limited group of young lung transplant candidates” to receive “additional priority for matching offers.”
The transplant network said in a statement that all organ-allocation policies “must weigh the unique needs and circumstances of transplant candidates with the benefit a transplant can provide them.”
“This is a difficult balance for very young lung transplant candidates in particular,” said Stuart Sweet, board secretary for the transplant network and its administrator, the United Network for Organ Sharing. “There are very few candidates in this age group and the progression of their lung disease may be considerably different from other patients, even those just a few years older. This exception is meant to provide an appropriate balance for a specific group of candidates.”
In June 2013, a federal judge ordered that Sarah Murnaghan, who was suffering from end-stage cystic fibrosis, be placed on the waiting list for adult lungs despite her age. Under the original guidelines, children younger than 12 had to wait for pediatric lungs. Her parents sued after former Health and Human Service secretary Kathleen Sebelius had refused to grant the exception, arguing that the policy was arbitrary and discriminatory.
Sarah received her first set of modified adult lungs a week later, but needed a second transplant after developing complications. She went home in August to her home in Newtown Square, outside Philadelphia.
The transplants raised ethical questions about how scarce organs are used and who decides.
Monday, Sarah’s family said it was “thrilled” by the policy change by the OPTN, which was established by Congress in 1984.
“From the beginning of this process, this fight has always been not just about Sarah — because there was a very good chance it would have been too late for her — but for every family in our situation,” the family’s statement said. “Today’s vote is important for two reasons: More children will be fortunate enough to receive life-saving lung transplants, and the medical community has determined this is the right step to take. There was a problem that was affecting a small group of transplant candidates and an action was appropriate.”
The original lung-allocation policy divided candidates younger than 18 into two groups: adolescents (12 to 18 years old) and pediatrics (younger than 12). The policy prioritized adolescent candidates, making them equally eligible for adult and adolescent donors.
In the past year, according to OPTN figures, exceptions were sought for 12 lung transplant candidates 11 years old or younger. Five received lungs from pediatric donors, which has been the standard policy, and one received lungs from an adolescent lungs. Three children died before donors could be found, one was deemed too ill to receive a transplant, and one other was removed from the list for other, undisclosed reasons.
The OPTN’s board approved temporary exceptions after Sebelius ordered the policy be reviewed in light of the judge’s order. The interim change was to expire July 1.
The current organ-transplant list shows 41 children younger than 17 are waiting for lung donors. Most — 25 — are between 11 and 17, with nine between 6 and 9 years old. Two infants less a year old are also in need of new lungs.
Now 11, Sarah is breathing on her own after being connected to machines for three years. Though she is still receiving rehabilitation, her family said that her new lungs “look beautiful” and that there has been no rejection.
“We have learned to let Sarah’s progress dictate her readiness for each step and we continue to take it one day at a time,” the family’s statement said. “We are going looking forward to her living life to the fullest — including returning to school during the 2014-2015 school year.”
“And we never forget Sarah received this incredible gift of life from her heroes, her organ donors. We thank them and their families for their sacrifice.”
The transplant network said the biggest challenge for all organ transplants is a shortage of donors.