IN BRIEF

The End of “Under 12″

November 3, 2014

UNOS board eliminates age classification for child lung transplant candidates and alters rules for pediatric heart transplants.

Many in the pediatric field were surprised last year when a federal judge ordered that a 10-year-old Pennsylvania girl with cystic fibrosis be added to the national adult waiting list for a double-lung transplant. She had spent 18 months on the pediatric list to no avail and without new lungs, her doctors said, she would die within weeks.

The lawsuit, filed by her parents, asked the court to overrule a policy known as the “under-12 rule,” which separated lung transplant waiting lists between children and adults based solely on their age, instead of on medical need. In response to the judge’s order, leaders of the Organ Procurement and Transplant Network, established by the U.S. Congress in 1984, and the United Network for Organ Sharing, which operates the OPTN, temporarily suspended the age classification.

Now, the governing board of the two networks has permanently done away with the under-12 rule. Under the new policy, if a patient age 11 years or younger meets certain criteria, a hospital’s transplant team can ask OPTN/UNOS to list the patient on both the child and adult waiting lists for donor lungs. If adult lungs become available and the child’s case is more dire than that of the patient at the top of the adult list, the adult lungs will go to the pediatric patient.

“These are never easy decisions because every time you prioritize one group of patients, you deprioritize another,” says William T. Mahle, MD, incoming vice chair of the Pediatric Transplantation Committee for OPTN/UNOS and medical director for the heart transplant program at Children’s Healthcare of Atlanta. Dr. Mahle was on the committee that recommended the temporary suspension of the under-12 rule.

Changes to the network’s organ procurement and transplant policies aren’t unusual, but officials with OPTN/UNOS say this was the first time policy revisions stemmed from a lawsuit.

“I think UNOS felt like they couldn’t be on the wrong side of this issue when there was some positive public sentiment supporting it and the courts supporting it,” Dr. Mahle says.

Less controversial but equally important are two changes the OPTN/UNOS board made to policies governing pediatric heart transplants. Child heart transplant candidates are rated as either status 1A, 1B or 2, with 1A getting first priority when a donor organ becomes available. In the past, the 1A ranking was based solely on how long a child had been on the waiting list. Now, 1A status is reserved for the sickest patients. Children whose condition is stabilized with medication, such as those with certain types of cardiomyopathy that can be managed with the drug inotrope, will be classified as 1B.

The board also voted to allow children under the age of 2 years to receive hearts from donors with a different blood type. The change follows new research that shows young patients often do well in these procedures, known as ABO-incompatible transplants.