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Secretary Sebelius and OPTN Failed to Intervene for Sick Girl

Sarah Murnaghan, the 10-year old girl with end-stage cystic fibrosis who nearly died while waiting for a lung transplant, continues to recover after receiving two lung transplants and having surgery for partial diaphragm paralysis.

Although she was at death’s door, Sarah almost did not receive a lung transplant because of an arbitrary and capricious rule that prohibited children under the age of 12 from getting adult lungs unless the lungs were first offered to and refused by adults and adolescents on the waiting list.  The rule effectively limited the pool of eligible organs to pediatric lungs, which are much rarer than adult lungs.  It is unclear why the cutoff for adult lungs was set at 12 years.

When Sarah’s parents became aware of the rule, they requested an exception.    Kathleen Sebelius, the U.S. Secretary of Health and Human Services, acknowledged that it was an “incredibly agonizing situation,” but declined to intervene and suspend the rule.  Similarly, the Organ Procurement and Transplantation Network (“OPTN”) voted 14-0 to not suggest emergency changes to existing rules.

As a result of this utter lack of compassion and common sense, it took a federal district judge, Michael Baylson, to rule that Sarah was eligible for adult lungs. Judge Baylson has since added a second child with cystic fibrosis, Javier Acosto, to the adult waiting list.

It is sad that it took a judge to intervene.  How many children perished because of the arbitrary rule is unknown.  Thanks to Sarah’s parents, who refused to accept no for an answer, children waiting for lung transplants will be treated equitably with adults for the time being.

For the next year, OPTN is allowing doctors to submit a request to a national review board to have a child under the age of 12 put on the adult waiting list, and the board has seven days to approve the request.  The temporary policy change expires next July unless it is made permanent.




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