Organ Transplant Rules Suspended for Sick Girl

     (CN) – A 10-year-old with end-stage cystic fibrosis should be on the adult transplant list, a federal judge ruled, suspending existing organ-allocation rules.
     Janet and Francis Murnaghan’s 10-year-old daughter, Sarah, has been on the pediatric transplant list waiting for lungs since 2011.
     Sarah has spent the last three months at Children’s Hospital of Philadelphia, and she may have three to five weeks to live without a transplant, NBC reported.
     The couple said they just learned in late May about the Organ Procurement and Transplantation Network’s “under 12” rule, which prevents children younger than 12 from receiving adult organs unless adults and teens in their region refuse them first – even if the child is sicker than the older recipients.
     The Murnaghans sued U.S. Health and Human Services Secretary Kathleen Sebelius in the Eastern District of Pennsylvania early Wednesday to stop her from enforcing the rule, which they claim violates the National Organ Transplant Act of 1984.
     At a hearing later that day, U.S. District Judge Michael Baylson issued a temporary restraining order, forcing the transplant network to make an exception for Sarah for at least 10 days, until a hearing on Friday, June 14.
     Baylson explained his reasoning in a supplemental memorandum June 7.
     “First, Dr. Goldfarb, the physician for plaintiffs’ daughter, Sarah, and an expert in the field of pediatric pulmonology, testified that the ‘Under 12 Rule’ was developed almost 9 years ago and that, based on the medical and scientific experience that has accrued since that time, he believes the rule is ‘arbitrary,’ at least as applied to children between the ages of 5 and 11 who, like Sarah, have a disease process that is found in adults,” Baylson wrote. “Dr. Goldfarb testified that children in this group can now successfully receive adult lungs (often via a surgery that reduces the size of the lung), with survival rates and long-term outcomes that are essentially the same as adults.” (Parentheses in original.)
     “A second factor underlying the court’s ruling was the government’s appropriate disclosure at the hearing that the Organ Procurement and Transplantation Network (OPTN) – the national board that administers the organ transplant program – has scheduled an emergency meeting for Monday, June 10, 2013,” he added. “One of the items on OPTN’s agenda is whether it should suspend operation of the Under 12 Rule pending more detailed study. The fact that the OPTN is holding an emergency meeting for this purpose suggests, in accord with Dr. Goldfarb’s testimony, that legitimate questions exist about the validity and wisdom of the Under 12 Policy.
     “Considering these and other factors, the court concluded that issuance of the TRO [temporary restraining order] was very much in the interest of the public as well as the plaintiffs and Sarah,” the ruling continues. “If, for example, the OPTN decides to suspend the rule on Monday, it would be a tragedy if Sarah were to die prior to the meeting from remaining ineligible for lungs that would have otherwise become available if she were treated as an adult.
     “Finally, this court did not in any way, shape, or form dictate when or whether Sarah should receive a lung transplant. The only legal effect of the ruling is that, for the limited duration of the TRO, Sarah will be treated the same as adults and will receive a ranking based on the details of her case relative to others, as provided by federal statutes and regulations.”
     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.
     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.

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