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Judge orders girl added to adult lung transplant list

Sarah Murnaghan, 10, shown with her parents Janet and France Murnaghan has cystic fibrosis and needs a lung transplant.
Sarah Murnaghan, 10, shown with her parents Janet and France Murnaghan has cystic fibrosis and needs a lung transplant.Sarah Murnaghan

A federal judge on Wednesday ordered the U.S. Health and Human Services Secretary to suspend existing organ allocation rules to give a 10-year-old Pennsylvania girl a better chance at a life-saving lung transplant.

U.S. District Court Judge Michael Baylson told Kathleen Sebelius to direct the Organ Procurement and Transplantation Network, or OPTN, to make an exception to the so-called "Under-12" rule as it applies to Sarah Murnaghan, who has end-stage cystic fibrosis, for at least 10 days, until a hearing on June 14. That move means that the girl can be considered more quickly for organs as an adult, instead of being limited to the pediatric transplant list. 

As of 10:34 p.m. eastern time Wednesday, Sarah was placed on the adult transplant list, while also retaining priority status on the pediatric list, according to a letter sent Thursday from Sebelius to Dr. John Roberts, head of the OPTN board of directors. 

The ruling, which grants a temporary restraining order, applies only to Sarah, although Baylson indicated that he would consider a similar move for another child in Sarah's circumstances, if a family presented the case in court. 

"For us, this means that for the next 10 days, Sarah's placement in the queue for adult lungs will be based on the severity of her illness, and she will not be penalized for her age," parents Janet and Francis Murnaghan said in a statement. "We are experiencing many emotions: relief, happiness, gratitude, and, for the first time in months: hope."

Their elation was echoed by Sen. Pat Toomey, R-Pa., who advocated on behalf of the family. 

"Finally, we have some positive news for Sarah and her family," Toomey said in a statement. "I applaud today's ruling and am grateful to Judge Baylson for quickly issuing his decision on such an important matter."

But the ruling immediately raises concerns about fairness -- and the risk of more lawsuits, said Art Caplan, director of the division of medical ethics at NYU Langone Medical Center. While it's admirable that Baylson chose to try to help Sarah and others, the decision threatens the integrity of the nation's existing organ allocation process, he said. 

"It is not clear why everyone now waiting at the bottom of any transplant list would not seek relief in federal court," Caplan said. "Unless the judge has reason to think the lung distribution rules are simply a product of age discrimination and nothing more -- which seems highly unlikely -- then this becomes a troubling instance of non-doctors deciding who is the best candidate to receive a lung or other scarce medical resource."

OPTN officials were working to schedule an emergency meeting to consider the issues, a spokesman said. 

Sarah's parents sued Sebelius early Wednesday to prevent her from enforcing the "Under-12" rule that prevents children younger than 12 from receiving adult organs unless adults and teens in their region refuse them first.

They contended that the rule, developed by OPTN surgeons and experts, unfairly penalized their daughter and other young children awaiting transplants.

"We will not stand by and let Sarah die," the parents said. 

They said that Sebelius had the authority but refused to take action on behalf of Sarah and other children in her situation. Nationally, about 1,700 people are waiting for lung transplants, including 31 children 10 and younger, according to OPTN data. In Region 2, Sarah's region, 222 people are waiting for lung transplants, including six children 10 and younger. 

"Every hour that she can participate in the OPTN's system for allocating lungs without being forced to stand at the back of the line for the much larger pool of lungs donated from adults ... could save her life," said the motion filed in U.S. district court in eastern Pennsylvania. 

Sebelius repeatedly has said that the medical decision about who receives specific organs should be left up to transplant experts. She asked for an urgent review last week of OPTN policies, with an eye toward making more organs available for children.

“The worst of all worlds, in my mind, is to pick and choose who lives and who dies,” Sebelius said Tuesday at a Congressional hearing where she was grilled by Republican members about Sarah’s case. 

Sarah has been on the pediatric transplant list waiting for lungs since 2011. She has been hospitalized at Children’s Hospital of Philadelphia for three months as her health declines. Her parents estimate she may have three to five weeks to live without a transplant. They said they learned only last week about the distinctions between pediatric and adult transplant waiting lists.

The Murnaghans say that Sarah's condition has worsened just since they launched an aggressive campaign to challenge the OPTN rules. Last week, they said her Lung Allocation Score, or LAS, was 66 on the 100-point scale used to measure the severity of illness. On Wednesday, they said her score had climbed to 78. 

Transplant experts said they don't assign LAS levels to children younger than 12. Doctors at Children's Hospital in Philadelphia have refused to discuss Sarah's specific case or the larger issues of pediatric organ donation, citing privacy concerns, a hospital spokeswoman said. 

Although dozens of strangers have offered to donate part of their lungs for Sarah in living lobe transplant operations, the child's condition is unsuitable for the rare procedure, her family says. The Murnaghans have asked for direct donations of organs from any family who may lose a loved one in the near future. 

In their motion, the Murnaghans challenged an OPTN rule that distinguishes between pediatric and adult transplant recipients. The existing rule says that children younger than 12 can receive organs matched for size and age from other children, with sickest kids receiving top priority. But the rule also says that organs from adult and teen donors must be offered to all patients older than 12 from Sarah’s region first -- even if Sarah is sicker than the other recipients.

The parents contended that the under-12 rule violates the command of the National Organ Transplant Act of 1984, which allows for “equitable” distribution of organs that address “the unique health care needs of children.”

They said that Sebelius’ refusal to set aside the rule and allow Sarah and others in her rare situation to compete for organs based on the severity of their illness, not their age, is “arbitrary, capricious and an abuse of discretion.”