PHILADELPHIA, PA—Attendees at the trial of Free Speech Coalition, et al v. Holder, which seeks to overturn the federal recordkeeping and labeling law, 18 U.S.C. §2257, were a little surprised last Wednesday when Judge Michael M. Baylson, the federal district judge presiding over the trial, told everyone that we would have a longer lunch break that day, especially because he didn't say why, though he did mention something about his hearing from attorneys seeking a temporary restraining order (TRO).
Little did we realize how important that restraining order was!
As anyone following the news knows, a 10-year-old girl by the name of Sarah Murnaghan has cystic fibrosis, a debilitating lung disease, and according to her physicians, she's in the end stage of that disease. Not much can be done for her absent a lung transplant—and that's where the controversy started.
It seems that Sarah's been on the national Organ Procurement and Transplantation Network (OPTN) list—in fact, at the top of the list—for a lung transplant for about 18 months as her condition steadily worsened, but the OPTN rules distinguish between adults needing transplants and children under 12 needing the same. And while Sarah would be first in line to receive a lung from any child that died, assuming other factors like blood type, lung size and Sarah's chances for survival were compatible, she would be near the bottom of the list for any adult lung that became available. Federal Health and Human Services (HHS) Administration rules require that any adult lungs must first be offered to any adults living in the Philadelphia area who would benefit from the transplant, and only if all the eligible adults refused would children be considered.
That distinction didn't seem right to Sarah's parents, so they sued HHS Secretary Kathleen Sebelius to ask her to waive the "adults-first" rule for adult lungs in order to give Sarah possibly a fighting chance—and the case landed right in Judge Baylson's lap, and during Wednesday's lunch break, he heard from expert witnesses regarding Sarah's condition.
"The median survival for her age group right now is roughly — so median means half the people would be still alive at this time — is greater than six or seven years," said Dr. Samuel Goldfarb, the medical director of the Children's Hospital of Philadelphia lung transplant program. "If you live through the first year, it goes even higher. It's eight to nine years and that's the standard."
Dr. Goldfarb also testified that the "Under 12 Rule" had only been in effect for nine years, and that he felt that the rule was "arbitrary." He also noted that the OPTN's national board had scheduled a meeting for Monday, June 10, and that one of their agenda items was the possible suspension of the Under 12 Rule for further study.
"Considering these and other factors, the Court concluded that issuance of the TRO was very much in the interest of the public as well as the Plaintiffs and Sarah," Judge Baylson wrote in a Supplemental Memorandum. "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," he continued. "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."
Later, the judge extended his order to put 11-year-old Javier Acosta of New York City on the adult list as well.
UPDATE: Sarah's got her lung! Following Judge Baylson's ruling, Sarah Murnaghan has received an adult lung from an anonymous donor, and the operation to install it will take place in the next few days. And in almost-as-good news, the OPTN executive committee, though rejecting an outright reversal of the Under 12 Rule, will create a special appeal and review system to hear cases like Sarah's. Apparently, several on the committee voiced objections to the judge's ruling, citing serious medical and ethical concerns in allowing a federal judge to rule on what they consider to be strictly a medical decision.
"I think what they're trying to tell the judge is 'We have a system. It's working. Let us decide, not you'," Dr. Caplan told CBS News.