The Murnaghans' case has received considerable attention. | AP Photo/Murnaghan family Sebelius ordered to make exception on transplant

A federal judge on Wednesday ordered HHS Secretary Kathleen Sebelius to allow 10-year-old Sarah Murnaghan to be moved to the adult lung transplant list, giving her a better chance of receiving a potentially life-saving transplant.

The quick and unusual ruling, made after a hastily scheduled emergency hearing, follows a campaign by the family and some members of Congress to pressure the Obama administration to change a federal policy that puts children under age 12 at the bottom of the list of those who can receive donated adult lungs.


Murnaghan has cystic fibrosis and her doctors have said she may only live a few weeks without the transplant. She has been on the waiting list for pediatric donors for 18 months, but they are more rare and her condition is worsening. There’s no guarantee that even with the judge’s ruling, a suitable donor will become available in time, but her odds would be better.

( Also on POLITICO: Family goes to court over transplant)

The case played out amid growing controversy with Sebelius in the spotlight. Several right-wing blogs and commentators depicted her as a one-woman “death panel.” The child’s mother said Sebelius was choosing to let children die.

The judge’s action may have taken some of the immediate heat off Sebelius and the Obama administration. Yet it opened up a host of other questions about organ donation policy and hot-button health care politics.

U.S. District Judge Michael Baylson wrote in a temporary restraining order that by refusing to set aside the existing rule for children, Sebelius had failed “to protect the very few children nationally who are subject to it.” He added that the evidence showed that the rule “discriminates against children and serves no purpose, is arbitrary, capricious and an abuse of discretion.” Baylson, a George W. Bush appointee, scheduled a hearing for June 14.

( QUIZ: How well do you know Kathleen Sebelius?)

It wasn’t immediately clear what the judge’s order would mean for the rules that match patients with donors for lung transplants in the country, or how other patients and families in life or death situations would react. The Organ Procurement and Transplantation Network — which helps set national policy — has scheduled an emergency meeting for next Monday and will consider suspending the lung donor policy while it is reviewed, an HHS lawyer said at the emergency hearing in Philadelphia.

Transplant policy — for lungs and other organs — in the U.S. is made and administered by the OPTN working with the United Network for Organ Sharing under contract with the government. It’s inherently difficult because there aren’t enough organs for everyone who needs them, and people do die waiting.

Follow @politico

HHS declined to comment on a pending legal matter.

Mildred Solomon, president of the Hastings Center and a former member of an HHS transplant policy advisory committee, said she could not remember another case of a judge intervening regarding the wait list for an organ transplant.

“I think it’s unfortunate that the courts intercede in cases that you would hope would be settled by doctors and families,” she said. Transplantation policy is developed after years of deliberation by knowledgeable experts, she said, adding that “there’s a lot at stake here that has to do with fidelity and trust in our system.”

Indeed, some medical ethicists have said that while the lung allocation policy may well need to be reviewed and changed, they worry about making case-by-case decisions based in part on emotional media attention.

At the hearing, Dr. Samuel Goldfarb, one of the girl’s doctors at the Children’s Hospital of Philadelphia and the head of its heart and lung transplantation programs, testified that she was critically ill and had worsened in the past 24 hours. A machine has helped her breathe since she entered the hospital about three months ago, and she will probably need more invasive assistance within a week. Without new lungs, she’d probably die within weeks.

He said that 12 was an “arbitrary” age for the change in policy.

An HHS attorney who participated in the hearing by phone urged the judge to deny the family’s request, saying the policies are “expert policies [that] are established for the best interest of the patients according to scientific judgment” of the transplant community.

The girl’s family prevailed.

The ruling in the U.S. District Court for the Eastern District of Pennsylvania comes a day after Sebelius told House lawmakers that she would not intervene, despite requests from several, because she could not choose who lives or dies.

The Murnaghans’ lawyers have drafted a legal opinion claiming that Sebelius has the authority to change the relevant policy. Sebelius called the situation “agonizing” but said she, as one individual, shouldn’t be making life or death decisions.

“I can’t imagine anything worse than one individual getting to pick who lives and who dies,” she said at a House hearing on Tuesday.

Instead, Sebelius is seeking a review of the national policy on donated lung allocation. But she acknowledged it would not be done in time to help this child. The timeline, however, appears to be changing, with the announcement that OPTN is considering suspending the policy on an emergency basis.

“I’m happy to see the federal judge did what Secretary Sebelius should have done days ago,” said Rep. Lou Barletta (R-Pa.), who had begged Sebelius to intervene for the girl at a House hearing on Tuesday. He added that it will give “Sarah an opportunity to compete for a lung.”

The heart-wrenching case has become personal for Sebelius, and fast. Sarah’s mother, Janet Murnaghan, accused the Cabinet secretary of willfully letting children die on Wednesday.

“Secretary Sebelius is well aware of Sarah’s condition, that there are other children who could also die without relief from the Under 12 rule, and she has chosen to let them die,” Janet Murnaghan said in a statement.

And some on the right have erupted over Sebelius’s refusal to intervene, calling back the heated “death panel” rhetoric that nearly derailed Obamacare four years ago.

Sarah Palin, who helped ignite the “death panel” controversy, slammed the Obama administration for doing nothing.

“Govt bends the rules to target conservatives & harass journalists, but draws the line at saving a little girl’s life,” Palin tweeted Tuesday night.

While some Obamacare foes have painted the law’s Medicare payment advisory board as a death panel of unelected bureaucrats literally deciding who lives and who dies, the Drudge Report, Life News and right-wing blogs over the past day have labeled Sebelius a “death panel” for removing herself from the transplant decision.

Sebelius said it wasn’t appropriate to up-end policy in this way — and that putting Sarah at the front of the line would mean other young people waiting for transplants would also have to wait longer.

Lung transplants are far more common in adults that children, and part of the reason for the different policy for the under 12 group is because there are gaps in medical knowledge about the procedure, which is rare for children.

Since 2008, there have been 8,775 lung transplant performed in the country. Only about 1 percent — or 88 — have been for children under 12, according to data from OPTN. Adults receive the overwhelming majority — more than 8,500 — with adolescents accounting for the remainder.

In recent years, the transplant policy for kidneys and livers has increasingly favored younger recipients. In the case of lung transplants, the organ network has expanded the area where it searches for donors to 1,000 miles from the patient in need, but the youngest children only have priority for those lungs given by donors under 12, and there are not many of them.

Some experts say the policy should be revisited but that making an immediate decision under the media glare could set a bad precedent, rewarding some patients at the expense of others, who would be moved down the list, and undermining the faith in the system.

Kathryn Smith and Jennifer Haberkorn contributed to this report.