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Proposed policy would help children gain access to donor lungs

Wes Venteicher
| Monday, Sept. 7, 2015, 10:56 p.m.
Lung transplant recipient Sarah Murnaghan, looks up as her mother Janet brushes her hair aside, during a news conference after arriving home from the hospital Tuesday, Aug. 27, 2013, in Newtown Square, Pa.  Sarah Murnaghan, who has end-stage cystic fibrosis, received two lung transplants this summer at the Children's Hospital of Philadelphia after a federal judge intervened in her parents' lawsuit challenging national transplant rules that put her at the end of the waiting list for adult lungs. (AP Photo/Matt Rourke)
Lung transplant recipient Sarah Murnaghan, looks up as her mother Janet brushes her hair aside, during a news conference after arriving home from the hospital Tuesday, Aug. 27, 2013, in Newtown Square, Pa. Sarah Murnaghan, who has end-stage cystic fibrosis, received two lung transplants this summer at the Children's Hospital of Philadelphia after a federal judge intervened in her parents' lawsuit challenging national transplant rules that put her at the end of the waiting list for adult lungs. (AP Photo/Matt Rourke)

Children in need of a lung transplant could be given priority over adolescents and adults when pediatric lungs become available, according to a proposal by the organization governing the nation's organ transplant system.

The Organ Procurement and Transplantation Network's policy committee says the change benefits children while avoiding harm to adults.

“Ethically and emotionally, it makes sense that we'd want to allocate lungs to children if we could and offer them every positive chance to obtain a transplant,” said Dr. Kevin Chan, vice chairman of the Thoracic Organ Transplantation Committee, which developed the proposal.

The proposal fulfills a 2013 mandate from former Department of Health and Human Services Secretary Kathleen Sebelius to find ways to improve sick children's access to donor lungs. Sebelius ordered a policy review when a 10-year-old Philadelphia girl, Sarah Murnaghan, requested permission to receive lungs designated for adults. The girl's plight gained national attention when her family said she had weeks to live without a lung.

Policy reserves child lungs for children and adolescent lungs for adolescents within given geographic boundaries, but if neither a child nor an adolescent in the area needs lungs, an adult would get them if the organs are suitable.

The proposed policy would offer available lungs to children and adolescents who are farther away — in a different geographical zone — before giving them to nearby adults. It would break down some of the barriers between children and adolescents, giving preference to anyone younger than 18 who is the right size for the donor lungs.

“Is it a great number of increase? We don't think so,” Chan said. “But it may be significant. It increases that opportunity.”

Adult lung donors far outnumber child donors, Chan said, minimizing any adverse effect for adults who would lose preference for child or adolescent lungs.

Nearly 90 percent of the 38,225 people who donated lungs from January 2008 through May 2013 were 18 or older, according to data from the Organ Procurement and Transplantation Network.

The proposal does not directly address the policy that initially prevented Murnaghan from receiving adult lungs in 2013. That policy reserves adult donor lungs for adults and adolescents — but not children — who show the greatest need in an allocation formula. While the proposal doesn't directly address the provision, it might have increased the lung offers Murnaghan got from similar-sized donors who were younger than 18, Chan said.

A judge granted Murnaghan an exception from the rule, and she received adult lungs in a successful transplant. Sixteen children have been granted exceptions since, and that policy remains in place.

Dr. Geoffrey Kurland, medical director of pediatric lung transplantation at Children's Hospital of Pittsburgh of UPMC, expressed concerns in 2013 that the judge's ruling would open the floodgates to children requesting adult organs, which are not always well-suited for children.

The exception requests have not been as numerous as he feared, Kurland said Friday, and he believes the proposal is balanced.

“The changes that are proposed, I think, will help alleviate my concerns that I had to a pretty good extent. I think (the committee) did the right thing,” he said.

The biggest impediment to transplants is a lack of donors, especially child donors, Kurland said.

As of Friday, 1,537 people were waiting for lungs, according to United Network for Organ Sharing statistics. Thirty-six are 17 or younger. Of those, 20 are 11 to 17, 11 are 6 to 10, and five are 1 to 5.

The proposal allows infants younger than 2 to receive lungs of a different blood type, a procedure that Chan said shows promise. Older bodies reject lungs of a different type, he said.

Wes Venteicher is a staff writer for Trib Total Media. He can be reached at 412-380-5676 or wventeicher@tribweb.com.

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