PHILADELPHIA (AP) — Secretary of Health and Human Services Kathleen Sebelius is calling for a review of policies affecting patients needing lung transplants as a 10-year-old Pennsylvania girl whose parents say she’s been denied the life-saving surgery because of her age remains hospitalized on a ventilator.
Sebelius sent a letter Friday to the Organ Procurement and Transplantation Network, asking it to review the policy on lung allocation. The nonprofit agency is under contract with the federal government and also works with United Network for Organ Sharing, which manages the transplant system.
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.”
Sarah Murnaghan’s parents say the Newtown Square girl has end-stage cystic fibrosis and has been unable to leave Children’s Hospital of Philadelphia for three months, needing a ventilator to breathe.
They say she has been awaiting a transplant from a pediatric donor and is also eligible for a lung from an adult donor. But under existing policy all adults 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. The girl’s parents called for a change in the policy after their appeal was denied.
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.
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.