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Vote allows special appeal for kids seeking life-saving lung transplants

The national organization that manages organ transplants voted to allow an appeals process after the families of two dying children filed lawsuits.

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The executive committee of the Organ Procurement and Transplantation Network considered a change to the rule that limits kids to the pediatric waiting list after the families of two dying children filed lawsuits. (HOANG DINH NAM/AFP/Getty Images)

Children younger than 12 needing lung transplants can now appeal to be placed on a waiting list for adult lungs, the board overseeing organ transplants voted on Monday.

The executive committee of the Organ Procurement and Transplantation Network considered changes to the rule that limits kids to the pediatric waiting list after the families of two dying children filed lawsuits.

Lawsuits filed on behalf of 10-year-old Sarah Murnaghan and 11-year-old Javier Acosta, who both have end-stage cystic fibrosis, challenged the rule that prevents children younger than 12 from qualifying for adult lungs unless all eligible adolescent and adult patients in the same geographic region have turned them down.

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The organization didn't change the rules drastically but did allow a type of appeals process where childrens' doctors can apply to have their patients considered as adolescents, which would allow them access to the pool of adult lungs.

According to the network, 1,659 people are currently waiting for a lung transplant in the US.

About 30 of them, like Sarah and Javier, are younger than 12 and not eligible for adult transplants.

A federal judge last week agreed with the families and ordered the Department of Health and Human Services to put Sarah and Javier on the adult waiting list, at least temporarily.

"We're not trying to skip ahead of anyone," Javier's mother Milagros Martinez said at a news conference Saturday. "We just want him to have a fighting chance."

Javier's older brother Jovan died waiting for a lung transplant in 2009, said a lawyer for Martinez.

Murnaghan's doctors have said she may only have a few weeks to live and that no suitable lungs have been found for her. She has been on the pediatric transplant list for new lungs since 2011.

The OPTN is trying to navigate between staying in charge of who gets organs, while acknowledging that the 12-year-old cut off for adult lungs is arbitrary and may harm some children.

Bioethicist Arthur Caplan, director of the division of medical ethics at NYU Langone Medical Center, told NBC that the board's decision seemed like a good solution.

"Ironically, the lawsuit is pushing the policy," said Caplan. "They are trying to preserve the integrity of the UNOS system for distributing organs, and trying to acknowledge that Sarah and her family have a point."

"They were very worried that they not open the floodgates to all kinds of people who need all kinds of organs to start going to Congress or to judges or the secretary of HHS," Caplan added.

http://www.globalpost.com/dispatch/news/regions/americas/united-states/130611/vote-allows-special-rules-kids-seeking-life-savi