10-year-old may be closer to lung transplant after judge’s ruling

Posted at 8:30 PM, Jun 05, 2013

(CNN) – A federal judge has granted a 10-day restraining order that blocks U.S. Health and Human Services Secretary Kathleen Sebelius from applying a policy keeping children younger than 12 from being prioritized for available adult lung transplants.

The move by District Court Judge Michael Baylson of Philadelphia could improve the chances for Sarah Murnaghan, a 10-year-old Pennsylvania girl with cystic fibrosis, to get a new set of lungs.

Murnaghan could die within weeks without a transplant, her parents have said.

Family of girl desperate for transplant says she can’t wait for policy to change

Janet Murnaghan, Sarah’s mother, said the family is “thrilled … literally jumping for joy.”

In a written statement, the family added, “We are experiencing many emotions — relief, happiness, gratitude and, for the first time in months, hope.”

Where someone is placed on the adult lung transplant list depends on several factors — blood type, distance from donor to potential recipient, and a lung allocation score. The score is derived from medical factors like test results and the patient’s diagnosis.

Sarah’s parents said her score is a 78. Anything above 60 is considered a high score, according to reports published on the Organ Procurement and Transplantation Network website.

The Murnaghans had argued 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.

According to the United Network for Organ Sharing, or UNOS, five children received lung transplants in the first three months of the year and 72 were on the waiting list.

A spokeswoman for UNOS said the group was awaiting clarification from the court on the ruling.

Two days ago, the Murnaghans asked 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.

Sen. Pat Toomey and Rep. Patrick Meehan, both Pennsylvania Republicans, 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.”

Toomey issued a statement Wednesday saying he was happy the judge acted quickly.

“Now Sarah has a chance for a lung transplant, and I plan to keep fighting for her and others who deserve to be eligible,” he said. “As I’ve said all along, Secretary Sebelius should use her authorities to make medical need and suitability, rather than age, be the primary criteria in determining how organ donations are prioritized.”

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 have said they believe modified adult lungs might save the girl’s life.