Controversial transplant rule change becomes permanent

Policy will expand child patients' access to organs

One year after the Organ Procurement and Transplantation Network (OPTN) temporarily lifted restrictions to allow a dying 11-year-old girl to receive an adult lung transplant, the federal contractor voted to permanently expand adult transplant organ access to children on a case-by-case basis.

Transplant officials decide against emergency change to lung policy

Too young for lungs? Meet Sarah Murnaghan

In June 2013, Children's Hospital of Philadelphia physicians told the parents of Sarah Murnaghan, 11, that she was just weeks away from death as she succumbed to severe cystic fibrosis. Doctors said a lung transplant could extend her life, but children younger than 12 were not allowed to be considered for such transplants under OPTN rules.

Sarah's parents fought the restriction arguing that the severity of illness, not age, should determine whether children have access to available, life-saving organs.

Then-HHS Secretary Kathleen Sebelius called for a review of the policy and later announced she would not require doctors to make an exception in Murnaghan's case. Sebelius explained that a regular policy review is the best option "because the worst of all worlds, in my mind, would be to have some individual pic[k] who lives and who dies."

Why Sebelius says she can't intervene in a transplant decision

In response, Murnaghan's parents filed a complaint in a U.S. District Court arguing that the rule "serves no purpose" and was created in 2004 when health officials had insufficient data to build a system to determine which child organ-transplant candidates had the greatest needs.

U.S. District Judge Michael Baylson issued a 10-day injunction ordering HHS to temporarily suspend the lung allocation policy because of the severity of Murnaghan's illness. The policy expired July 1, 2013.

Judge orders Sebelius to intervene in transplant case

The fight to expand organ transplant

Sarah has since begun breathing on her own with her new set of lungs, but her parents kept fighting to have the organ transplant policy changed for other children like Sarah. As of Monday, there were 1,680 U.S. patients waiting for lung transplants, including 41 children under age 18, according to NBC News.

"There was a lot of criticism of us using the legal system to get lungs for Sarah, but that was the absolute last resort after we followed every other process and had been unsuccessful," Sarah's mother Janet told NBC News. "We didn't know if the rule would become permanent, but are thrilled that it appears that it will for two reasons: more children will be fortunate enough to receive life-saving lung transplants, and the medical community has decided that this is the right step to take."

But Art Caplan, the director of medical ethics at New York Langone Medical Center, says he is glad that OPTN did not give into public pressure, but instead made the policy permanent through established methods.

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"At the end of the day, the game is not to reward the person who yells the loudest, but to have the best allocation of scarce organs," Caplan says (Aleccia, NBC News, 6/23; Assefa/Landers, CNN, 6/23).

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