Kathleen Sebelius was ordered to put both children on the waiting list. | M.Scott Mahaskey/POLITICO Court acts on second transplant case

A federal judge in Philadelphia has granted a temporary restraining order in the second case involving children needing lung transplants in as many days, raising questions among ethicists about political pressure, emotional media coverage and case-by-case decision making about allocating scarce organs.

The family of 11-year-old Javier Acosta filed suit on Thursday against Health and Human Services Secretary Kathleen Sebelius, seeking broader eligibility for a potentially lifesaving lung transplant for the boy. The family of Sarah Murnaghan, 10, had gone to court a day earlier.


Both families challenged the current national transplant policy, which puts children younger than 12 first in line for organs from a child, even though pediatric lung donors are even rarer than adult donors. Both families wanted the age limitation lifted, so they could be eligible for organs from adult donors, too.

( Also on POLITICO: Sebelius ordered to make exception transplant)

In both cases, U.S. District Judge Michael Baylson ordered Sebelius to put the children on the adult waiting list. The children, who have cystic fibrosis and are at Children’s Hospital of Philadelphia, are now on both the adult and pediatric waiting lists.

The extraordinary cases have created political controversy in Washington, with pressure on the administration to take action for individual children and to short-circuit the system for updating organ transplant policy. That worries transplant experts and bioethicists — but Steve Harvey, the attorney representing both families, said the current policy is discriminatory. Acosta had a brother who died at age 11 while waiting for new lungs.

There are only about 15 children younger than 12 on the waiting list for lung transplants nationwide. Harvey said that if the Organ Procurement and Transplantation Network, which is responsible for the nation’s transplant policies, suspends its rule at its emergency meeting Monday “it would moot the cases.”

The lung transplantation policy has come under fire from some members of Congress, too, who had pressed Sebelius to intervene. Some conservative blogs said she was acting like a “death panel,” although the dialogue in Congress has not been as heated.

( PHOTOS: Do you know Kathleen Sebelius?)

Sen. Pat Toomey (R-Pa.) praised the court ruling but called on Sebelius to make the policy change permanent.

“I am not asking Secretary Sebelius to make an exception for one individual,” Toomey said on the Senate floor. “I would be first to suggest that that would be a dangerous place to go, we don’t want individual Cabinet members or politicians or anyone else making decisions about who’s going to get an organ and who’s not. What we want is a system that works, and the current system doesn’t work for kids who are good transplant candidates and have the acute need but aren’t yet 12 years old.”

But experts in the transplantation community are worried that the cases could send a troubling message. Namely, if you’ve got a problem with a transplant waiting list policy, take your case to your local television station and sue the government.

And while you’re at it, recruit your congressional delegation to the cause, medical establishment be damned. Then you may move up the list.

No one is condemning families who will stop at nothing to save their dying children. But the involvement of the courts and politicians is different.

“I think that the federal courts are not in the same cautious, thoughtful, well-informed environment where all of these stakeholder evaluations could be made,” said Dr. Stuart Sweet, medical director of the pediatric lung transplantation program at St. Louis Children’s Hospital and secretary of the OPTN board of directors. “If this opens the door for others who choose to change the system that way, that would be very unfortunate.”

“But I can’t argue with someone using every resource they can to try and save a life, That’s what happened here,” Sweet said. “Every hand that touched this case has tried to do one thing, save a child.”

The policies are painstakingly crafted by committees of experts and aired for public comment before they take force. This particular policy was implemented in 2005 after five years of deliberation over how to replace the first-come, first-served standard. That had been the norm to that date and paid no heed to medical urgency.

Provisions in the policy were meant to improve access to organs for the pediatric population. First, it gave children younger than 12 priority for organs donated by those in their age group, and it expanded the geographic scope of the search as well.The mortality rate for children on the waiting list fell after the policy was in place, and while it’s a relatively small group, it remains better off in that regard than other age groups.

The transplantation network says no judge has ever before ordered it to suspend its policy for individual patients.

Sebelius told lawmakers earlier this week she didn’t think it was appropriate for her to intervene on behalf of Sarah Murnaghan, despite pressure from pleading lawmakers. Sebelius ordered a review of the policy but didn’t create an exemption for one patient.

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

Mildred Solomon, president and CEO of The Hastings Center, a bioethics research center, said that was the right thing to do and that she hopes the OPTN maintains the same standards for its policy review as it would for others, but she is concerned that it won’t.

“I think Secretary Sebelius should be commended for what she did — it was hard psychologically, it was hard politically, but it was the right call,” Solomon said. She add: “It sounds like HHS feels like they may have no choice but to suspend the rule, and that’s too bad, because her first instinct was courageous.”

The OPTN has not said what it will do when it meets Monday, but its president, Dr. John Roberts, made clear in a letter to Sebelius on Thursday that it could effectively eliminate the policy on Monday.

It’s facing obvious public and political pressure to abandon what the kids’ lawyers call the “Under 12” rule, but pressure as well from major players in the transplantation community urging the network not to flinch, interference from the court notwithstanding.

In a carefully worded joint statement Thursday, the American Society of Transplant Surgeons and the American Society of Transplantation said they “support OPTN policies that are based on the best available medical judgment, scientific evidence and principles of equality, and a continuous refinement of OPTN policies to best serve patients done in an organized and deliberative fashion. We believe it would be unwise to change or otherwise obfuscate current policy without the deliberative approach mandated within” the National Organ Transplantation Act, which established the network.

After the court acted Wednesday in Murnaghan’s case, the OPTN gave the little girl a fake birthday that would give her a second spot on the adult waiting list as a 12-year-old. Whether either child will get a lung transplant in time remains in question.

Last year, about 33 people per week received lung transplants nationwide and about four per week died waiting for organs. Experts worry the media-fueled prominence of the 10-year-old girl is blotting out the situation of the rest, putting a face on one wrenching case.

“For those who are certain they know that one child or another child would be or should be placed on the list, advanced on the list — they have to give reasons why the other person is not going to be,” said Daniel Wikler, a medical ethics expert at Harvard. “You’re kicking some other poor child or some other adult out of the operating theater. The rules are set up to make the wisest choice among the many candidates as possible.”

Kathryn Smith contributed to this report.