Organ-rule bypass sought for Newtown Square girl

Two Pennsylvania Republicans - U.S. Rep. Patrick Meehan and Sen. Pat Toomey - have asked the U.S. Department of Health and Human Services to bypass organ allocation rules and help a 10-year-old Newtown Square girl get a lung transplant.

The federal agency oversees the United Network for Organ Sharing (UNOS), which determines how donated organs will be rationed.

The parents of Sarah Murnaghan, who has cystic fibrosis and has been on the transplant list for 18 months, went public with their daughter's plight last week. Janet Murnaghan said that her daughter's condition is worsening and that she may die within a week or two. She has been in Children's Hospital of Philadelphia since February.

Sarah's aunt Sharon Ruddock said Wednesday that life-support equipment could keep the girl alive longer, but would worsen her odds of doing well after a transplant. "They're telling us she could crash at any time and need" to be put on a ventilator.

Allocation rules are complicated. Sarah Murnaghan is at the top of the waiting list for young children, which is based on severity of illness, her family says. That gives her a good shot at donor lungs from other children. But adult lungs could go first to adults who are not as sick.

She would have better access to adult lungs if she were 12. Her parents think she should get the first suitable lungs that become available regardless of the donor's age.

Apparently, a lot of people agree. The family's petition for special consideration on change.org had gotten almost 90,000 signatures by Thursday afternoon.

Ruddock said the family has appealed to UNOS twice for special consideration and is now appealing directly to HHS.

In a letter Tuesday, Meehan, who represents Delaware County, asked HHS Secretary Kathleen Sebelius to convene a special meeting "to give Sarah a chance at life and an adult lung from the next available donor. Sarah's young life literally hangs in the balance."

Toomey, in a letter also dated Tuesday, said: "I respectfully request that you do everything you can to assist Sarah Murnaghan. CHOP is aggressively treating Sarah in order to maintain her life and viability on the transplant list, but her time is running out."

Toomey's communication director, Elizabeth Anderson, said that Sebelius has the authority to direct UNOS to change its policies or "take other action she determines appropriate."

Toomey is concerned primarily about helping Sarah, not changing the policy permanently, Anderson said, adding, "Whether the policy should be changed prospectively, that is something to be considered after he does all he can to help Sarah."

HHS did not have a response Wednesday. Citing confidentiality, a spokeswoman for Children's said the hospital would not comment on the girl or her case.

The Organ Procurement and Transplantation Network, which develops allocation policies and is managed by UNOS, released a statement this week that children under 12 have different "biological needs and circumstances" than older candidates. One key difference is their size and lung capacity. It is possible to reduce the size of adult lungs so they will function in children.

Anne Paschke, a UNOS spokeswoman, said Wednesday that children under 12 are in a special category in part because the severity scores used to rank adult candidates on the list are not as accurate in children. She said children ages 6 to 11 are less likely to die while waiting for an organ than adolescents and adults.

"The policies have to be followed to make sure that all of the very sick people on the waiting list get an equal shot," she said.

Stuart Sweet, director of the lung-transplant program at St. Louis Children's Hospital, helped develop the pediatric allocation rules, last modified in 2008. He said it is easier for surgeons to transplant lungs when the donor and recipient are about the same size. Reducing the size of adult lungs for children is unusual but produces similar results, he said, noting, "It is a reasonable option to consider in a dire circumstance."

Children and adults have similar survival rates after transplant, Sweet said. Eighty percent to 90 percent are alive after one year. The number falls to 65 percent to 70 percent at three years and closer to 50 percent at five years.