After weeks of pleas from the family of 10-year-old Sarah Murnaghan of Newtown Square, the organization that sets national organ-transplant policy voted late Monday to temporarily improve children's access to adolescent and adult donor lungs, despite criticizing a federal judge for doing the same thing for her.
The executive committee of the Organ Procurement and Transplantation Network met to consider whether children under 12 were being treated unfairly because they may not be considered for adult lungs ahead of adults who are in less-dire need.
The panel voted unanimously to allow transplant centers to request, on a case-by-case basis, priority status for children under 12 so they can vie for lungs from older donors based on need. The special status would be granted - or refused - by the national Lung Review Board.
The amended rule would be effective until July 2014, allowing time to study whether a permanent change is warranted.
"We cannot undo the dangerous precedents set by the judiciary as a result of this case," said St. Louis pediatric lung transplant specialist Stuart Sweet, who proposed the temporary policy change. "But we can take steps to ensure that the next time this question arises, the case can be heard in a more appropriate venue."
Last week, Sarah's parents, Janet and Francis Murnaghan, sued after the Lung Review Board and Health and Human Services Secretary Kathleen Sebelius refused to grant her an exception. Sarah has cystic fibrosis and is close to death at Children's Hospital of Philadelphia; she was put on a ventilator Saturday.
A federal judge in Philadelphia on Wednesday granted her a 10-day reprieve from the "under 12 rule," and on Thursday added Javier Acosta, 11, of New York, another cystic fibrosis patient awaiting a transplant at Children's. The judge scheduled a hearing for Friday.
"This is going to apply to very few children nationwide, but it's important to them," said Stephen G. Harvey of the Pepper Hamilton firm, which is representing the families. "We think this is a positive step. ... It's something we specifically asked for."
The lung allocation system was overhauled in 2004 to rank patients on the waiting list based on the medical urgency and likelihood of transplant success. Since then, far fewer people of all ages have died while waiting for organs.
Children and adults are classified differently because their medical urgency was hard to compare. Sarah's lawsuit contended that because some adults with less dire need got lungs before children, the system amounted to age discrimination.
Vanderbilt University Medical Center transplant specialist Steven A. Webber, a member of the organ network's panel, said during the teleconference meeting: "We did not feel that there was overwhelming, compelling evidence of discrimination. I emphasize that this does not mean the committee feels improvements can't be made."
Relatively few children die and donate organs each year, so few pediatric lungs become available. Only 20 lungs were donated from children under 12 last year, compared with about 1,500 from adults.
But demand is also low. In May, there were 20 children under 12 on the waiting list nationally, and 1,300 ages 12 and up.
Inquirer staff writers Leila Haghighat and Stacey Burling contributed to this article.