Dying Girl’s Family Wins Temporary Order for Transplant

A 10-year-old girl who needs a lung transplant to survive will be considered a candidate for an adult organ under a temporary court order overturning a U.S. decision to deny her an exemption to transplant guidelines.

U.S. District Judge Michael Baylson in Philadelphia today issued a temporary restraining order allowing Sarah Murnaghan to be considered for a transplant from an adult donor after her family sued the government.

Kathleen Sebelius, U.S. Health and Human Services Department secretary, told Congress yesterday she wouldn’t sign a waiver allowing the Pennsylvania girl to sidestep a policy preventing children younger than 12 from being added to a priority list for adult lung transplants. The policy exists because of the different biological needs and circumstances between the age groups.

Sebelius said she spoke with the Murnaghan family and while she has asked for a review of donor procedures, the department had no plans to overstep the rules. Lawmakers urged the secretary at a hearing yesterday to set aside the policy on an emergency basis or direct the Organ Procurement and Transplantation Network to do more research about the suitability of adult organs for children.

“We believe the regulations allow for you to direct OPTN to conduct an experimental variance,” U.S. Representative Patrick Meehan and U.S. Senator Pat Toomey, both Pennsylvania Republicans, wrote in a June 3 letter to Sebelius. “We do not have much time to wait.”

Sarah Murnaghan has only a few weeks to live, they said.

Lawsuit

Murnaghan’s family sued Sebelius today in federal court seeking immediate injunctive relief, arguing that the under-12 policy is unfair. Baylson issued the temporary restraining order and scheduled a June 14 court hearing on a preliminary injunction.

Tait Sye, a spokesman for HHS, said today in an e-mail before the judge’s decision that the agency “declines to comment on an ongoing legal matter.”

Sebelius, at a budget hearing of the House Education and Workforce Committee, told lawmakers yesterday that she prefers a process set by “medical science and by medical experts” rather than politicians and policy makers.

“I would suggest that the rules that are in place and are reviewed on a regular basis are there because the worst of all worlds, in my mind, is to have some individual pick and choose who lives and who dies,” Sebelius said.

OPTN, created by Congress, operates as an independent nonprofit group under federal contract to manage transplant needs. Almost 1,700 people nationwide await a life-saving lung transplant, including 30 children ages 10 or younger, the OPTN said in a May 27 statement. In 2012 there were 11 lung donors from the ages of 6 to 10, the network said.

Transplant Policy

Murnaghan can’t receive a transplant from anyone older than age 12 ahead of other adults on the waiting list, according to national rules. The organ network said it can’t create an exemption on behalf of an individual patient, though it does routinely review allocation policies.

Sebelius wrote a letter May 31 to the president of OPTN asking for a review of lung allocation policies that pay close attention to the age categories, HHS spokesman Sye said in an e-mail.

“I urge you this week to allow that lung transplant to move forward,” U.S. Representative Tom Price, a Georgia Republican, told Sebelius at the hearing. “A study will take over a year.”

There are 40 “very seriously ill” Pennsylvanians older than 12 waiting for a lung transplant, Sebelius said. There are three other children as sick as Murnaghan in Philadelphia who need a transplant, she said. She didn’t say the other children’s ages.

“While the availability of organs remains limited, the OPTN is committed to developing and improving policies that give all groups of candidates the best possible opportunity for life-saving transplantation,” the network said in the statement.

To contact the reporters on this story: Alex Wayne in Washington at awayne3@bloomberg.net; Anna Edney in Washington at aedney@bloomberg.net

To contact the editor responsible for this story: Reg Gale at rgale5@bloomberg.net

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