Health and Human Services calls for lung transplant policy review after petition from girl's family

PHILADELPHIA Secretary of Health and Human Services Kathleen Sebelius is asking the organization that helps manage organ donations and transplants in the U.S. to review their lung transplant policies.

Sebelius sent a letter Friday to the Organ Procurement and Transplantation Network, regarding a review on the policy on lung allocation. The non-profit agency is under contract with the federal government and also works with United Network for Organ Sharing, which manages the transplant system.

The policies are under scrutiny after the parents of a 10-year-old Newtown, Square, Penn. girl with end-stage cystic fibrosis went on Change.org to petition for the rules to be changed. Sarah Murnaghan's parents claim she been denied life-saving surgery because of her age.

Current rules state that in order to determine who will be the top candidate for an adult organ transplant, people aged 12 and older are ranked in order of need. Since Sarah is below the minimum age, everyone 12 and older in the region with her blood type will be offered the lungs first, her parents say, even those more stable and with less severe conditions.

Sarah is currently at the top of the list for children's lung transplant, but there are far fewer child donors than there are adult ones. Her parents claim that this makes it unfair for younger children to receive life-saving transplants.

According to the Health Resources and Services Administration, there were only 10 lung transplants completed on children 10 and under in 2012. For comparison, there were 1,744 lung transplants on people 11 and older that same year.

Sebelius did not directly reference the Murnaghan case but had been petitioned by lawmakers and Gov. Tom Corbett to take action on the girl's behalf, and an online petition calling for a change had drawn more than 260,000 signatures by Saturday.

Sarah remains hospitalized on a ventilator, unable to leave Children's Hospital of Philadelphia. Her parents started the petition after their appeal about her ranking was denied. Sarah's relatives are also asking the public to help Sarah find a direct donor. Although Sebelius has called for a review of lung allocation policies, her family members say that will take too long for the rules to be changed. They say they hope someone will designate an organ to Sarah.

Sebelius asked that a "transparent, deliberative" review be done as soon as possible "with the intent of identifying any potential improvements to this policy that would make more transplants available to children" consistent with the goals of fairness and best use of organs.

She said the disparity between donors and children awaiting transplants is "especially stark" with only 20 lung transplants last year involving organs from donors up to age 11. She also said she is asking federal officials to "consider new approaches for promoting pediatric and adolescent organ donation."

United Network for Organ Sharing, also a nonprofit under contract with the government, said a committee would review the policy and the public would have a chance to comment on any proposed changes. But spokeswoman Anne Paschke said any changes most likely won't come quickly enough to benefit Sarah or others like her.

"The policy development process is not fast," she said in an email to The Associated Press. "Organ allocation policies are created to transplant as many people as possible overall, result in the fewest waiting list deaths overall and result in the best possible survival overall. In developing policies, committees and the board weigh data, medical evidence and experience, and public input."

Officials have said the original system setting priorities didn't establish criteria for children younger than 12 because of a lack of data, but the system was recently changed to give sicker children higher priorities for transplants and to cast a wider net for suitable candidates.