Children win broader access to donor lungs

June 23, 2014: Lung transplant recipient Sarah Murnaghan speaks during a news conference at her home in Newtown Square, Pa. (AP)

PHILADELPHIA – A national transplant board has permanently adopted a rule that gives sick children a better shot at donor lungs.

The vote Monday came a year after a Pennsylvania girl's need for new lungs sparked a national debate on donor rules. The Organ Procurement and Transplantation Network will now give children more consideration for adult lungs.

A federal judge had ordered the network to add 11-year-old Sarah Murnaghan, of Newtown Square, to the adult list last year as she battled end-stage cystic fibrosis.

After two transplants — one failed — Sarah is now breathing on her own for the first time in three years.

In a statement, her family called the lawsuit "the absolute last resort" after other appeals failed.

"We believed making lungs from donors 12 and older available to children under 12 who are good candidates to receive them was the right thing to do. We very much appreciate that the medical community (now) agrees with that," the family, including parents Janet and Francis Murnaghan, said.

The lung transplant issue only affects about 20 children a year, making it difficult to study outcomes, the network said. A dozen children have asked to be added to the adult list under a waiver this past year, but most are still matched with donor lungs from children, the transplant network said.

"Any allocation policy must weigh the unique needs and circumstances of transplant candidates with the benefit a transplant can provide them," said Dr. Stuart Sweet, secretary of the network, a private nonprofit group that manages U.S. organ allocation.

"This is a difficult balance for very young lung transplant candidates in particular," Sweet said. "The progression of their lung disease may be considerably different from other patients, even those just a few years older."

Lung transplants are not a cure for cystic fibrosis but can buy time. The typical life expectancy for cystic fibrosis patients is 37 years and continues to rise as new medical advances are developed.

The case raised questions among some health specialists and medical ethicists about how organ donation rules are developed and under what circumstances they might be disregarded.