Boy who helped change lung rule recovering from transplant


PHILADELPHIA — Javier Acosta, the Bronx boy who helped to improve children’s access to adult donor lungs, is recovering from a double lung transplant at Children’s Hospital of Philadelphia, according to his mother.

But his family’s fight to change lung allocation rules turned out to be moot in his own case. Javier, who has cystic fibrosis, turned 12 in August, which automatically made him eligible for adolescent or adult lungs based on his medical need.Two months later, he received lungs from a donor over age 12.

In June, the families of two children — Javier and Sarah Murnaghan, then 10, of Newtown Square, Pa. — persuaded a federal judge to suspend a lung allocation rule they said discriminated against them.

The rule says children younger than 12 cannot be considered for adult lungs until the organs have been offered to wait-listed adults, including adults in less dire need.

That controversial ruling led the Organ Procurement and Transplantation Network, the group that sets transplant policy, to temporarily ease the “under 12 rule” through July while the merits of a permanent change are studied.

Under the change, a national lung review board can grant children “exception” status, on a case-by-case basis, so they can vie for lungs from older donors based on need.

So far, 10 children have requested and been granted exception status.

Sarah — who received a second set of adult lungs after her first set failed — went home in August, culminating more than six months at Children’s.

 

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