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Originally published June 10, 2013 at 7:41 PM | Page modified June 10, 2013 at 10:39 PM

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Dying girl needing lung forces change in U.S. donor policy

A temporary solution to a policy that barred children under 12 from receiving adult lungs until all adults in need had an opportunity to accept them could help 10-year-old Sarah Murnaghan, whose family sued because she suffers from cystic fibrosis and will die without a lung transplant.

Bloomberg News

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U.S. lung-transplant rules are being temporarily eased to provide an avenue for sick children to receive an adult-donor organ, a shift in policy that followed pleas from the family of a dying Pennsylvania girl.

At an emergency meeting Monday, the executive committee of the Organ Procurement and Transplantation Network (OPTN) voted to create an interim classification for child-lung candidates with exceptional cases.

The rule would be effective until July 1, 2014, giving time to find a permanent solution to a policy that barred children under 12 years old from receiving adult lungs until all adults in need had an opportunity to accept them.

“My sense is that that particular age may be difficult to justify from a scientific point of view,” John Roberts, chairman of the organ-network committee, said at the meeting. “This exception will allow us to re-examine the lung-allocation policy considering the most recent data.”

The family of 10-year-old Sarah Murnaghan, who suffers from cystic fibrosis and will die without a lung transplant, sued after being denied an exemption to the so-called under-12 rule.

The girl’s plight sparked calls by lawmakers to review the organ-donor policies and she won a temporary court order last week making her eligible to seek an organ from an adult.

The OPTN, created by Congress, operates as an independent nonprofit group under federal contract to manage transplant needs, prioritizing patients by medical need.

Almost 1,700 people nationwide await a lifesaving lung transplant, including 30 children ages 10 or younger, the OPTN said. In 2012 there were 11 lung donors from the ages of 6 to 10, the network said.

Lawyers for the Health and Human Services Department argued in court that the transplant policy was established with the interests of patients in mind based on scientific judgment. While Sarah’s case is a tragic situation, the policy shouldn’t be interfered with, they argued.

“I would suggest that the rules that are in place and are reviewed on a regular basis are there because the worst of all worlds, in my mind, is to have some individual pick and choose who lives and who dies,” that agency’s secretary, Kathleen Sebelius, said last week at a House Education and Workforce Committee hearing.

Sarah’s doctors have decided that transplanting a set of adult lungs is appropriate in her case. She has been on the waiting list for child-donated lungs since December 2011.

She is now also eligible for lungs from an adult donor after the court order handed down by U.S. District Judge Michael Baylson. Baylson set a hearing on a preliminary injunction Friday.

Cystic fibrosis is a congenital disease affecting the lungs, pancreas, liver and other organs.

The lungs of people suffering from the disease clog with mucus, causing breathing problems and promoting the growth of bacteria, according to the National Institutes of Health. While there are treatments, there is no cure, according to its website.

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