(CNN) — The parents of a 10-year-old Pennsylvania girl who is waiting for a lung transplant asked a federal judge Wednesday to order officials to waive a rule that prevents her from getting lungs from an adult.
Sarah Murnaghan, who has cystic fibrosis, could die within weeks without a transplant.
Her family said in a lawsuit that the policy keeps children younger than 12 from getting adult lung transplants and “violates the command of the National Organ Transplant Act of 1984.”
They argue that since the number of children’s lungs available through organ donation programs is so small, Sarah — and other pediatric patients like her — should be added to the list of people waiting for adult lungs, prioritized by severity of their illnesses.
As it currently stands, every adult on the list would first have to turn down a pair of lungs before it could be offered to someone under 12.
Two days ago, the Murnaghans asked U.S. Health and Human Services Secretary Kathleen Sebelius to change the rules. She has previously told the family that she doesn’t have the authority to intervene in a particular case, but she also called for the policy review. Any change could take up to two years.
Several lawmakers have urged Sebelius to act.
Pennsylvania Republican Sen. Pat Toomey and Rep. Patrick Meehan co-signed a letter to the secretary saying in part, “You have the ability and authority to intervene to allow for Sarah and other children under the age of 12 to become eligible for adult organs.”
They asked that Sebelius “direct OPTN (the Organ Procurement and Transplantation Network) to conduct an experimental variance” and that an example in Murnaghan’s case would “help better inform the medical community’s understanding of how these transplants work in pediatric settings.”
Sarah is at the top of the list for any pediatric lungs that may become available for transplant in her six-state region.
The Philadelphia girl has been waiting 18 months for another pair of lungs as her ability to breathe has rapidly deteriorated. Adult lungs are far more available than lungs from children, and doctors believe modified adult lungs might save the girl’s life.