June 7, 2013 -- A family's fight to sidestep a controversial transplant rule and save their 10-year-old daughter has prompted the Organ Procurement and Transplantation Network to review its existing policy that pushes children under 12 to the bottom of the adult organ transplant waiting list regardless of their health. The announcement of the OPTN review came as the family of a second child awaiting a lung transplant sued and won an order to avoid the under-12 rule.
OPTN's executive committee meets June 10 to review data – such as waiting times, mortality rates and organ offers, according to a letter from the president of OPTN's board of directors, Dr. John Roberts, to Health and Human Services Secretary Kathleen Sebelius.
They will determine if a new policy is needed.
"If available data suggest that a change to the lung allocation policy is warranted, the executive committee would be able to approve an interim policy change and expedited plan for implementation at that time," Roberts wrote in the letter.
Eleven "priority 1" children younger than 12 years old are currently waiting for lung transplants, according to OPTN data compiled on May 24 for ABCNews.com. Nine under-12-year-olds awaiting lung transplants are categorized as "priority 2."
As a result of an emergency court order, 10-year-old Sarah Murnaghan now has two records in the official organ transplant database: one with her real birthday and one with a birthday to make the system treat her as a 12-year-old.
Sarah is dying of cystic fibrosis and won a federal court order Wednesday to sidestep the controversial transplant rule that had been preventing her from getting new lungs.
The Murnaghan family of Newtown Square, Pa., had been fighting a little-known organ transplant policy that had been effectively pushing its daughter Sarah to the bottom of the adult transplant waiting list because it mandated that adult lungs be offered to all adult patients before they could be offered to someone younger than 12 years old.
The family filed an emergency motion on Wednesday to prevent Secretary of Health and Human Services Kathleen Sebelius from enforcing the policy. Sebelius said Tuesday that she would not make an exception for Sarah.
But on Wednesday afternoon, Federal Judge Michael Baylson ordered Sebelius to stop enforcing the under-12 rule for Sarah "so that she can be considered for receipt of donated lungs from adults based on the medical severity of her condition as compared to the medical severity of persons over 12 in the Organ Procurement and Transplantation Network system." The order is effective immediately and will remain in effect unless the court rules otherwise at a preliminary injunction hearing on June 14.
Bioethicist Art Caplan wrote on Wednesday that politicians and bureaucrats shouldn't decide whether Sarah gets lungs because of the medical complexities of her case.
Speaking to ABCNews.com before the judge ruled in Sarah's favor, he said he didn't expect the Murnaghans to win because it would involve challenging the legitimacy of the entire organ transplant system. That is, unless lawyers could make a pure discrimination case. Otherwise, he said the effort was "doomed to fail."
"I don't think they have any other options to get her on the list," Caplan told ABCNews.com Wednesday after the emergency motion was filed but before the judge ruled in Sarah's favor. "Do I begrudge them the right or the effort to try to do what they can? No."
The case prompted a second family at Sarah's hospital – the Children's Hospital of Philadelphia – to sue to be considered equally on the adult lung waiting list, according to a complaint filed Thursday. Javier Acosta, an 11-year-old from the Bronx who is dying of cystic fibrosis, has now been granted the same exception as Sarah, according to a statement from his lawyer at Pepper Hamilton LLP.
"Javier needs a lung transplant to survive. Without one he will most likely die before his 12th birthday in August," his lawyer wrote in the complaint. "What makes Javier's situation even more heartbreaking is that Javier's brother – another son of plaintiff Milagros Martinez – died two years ago at the age of 11 while waiting for a lung transplant that could have saved his life."
Despite their court victories, the clock is still ticking for Sarah and Javier. A judge could rule to reinstate the under-12 rule on June 14 at the preliminary injunction hearing.
If they don't receive lungs by then, it's not clear whether the duplicate organ candidate records will be deleted. A spokesman for HHS said he could not speculate on what might happen.