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Dying Girl Needing Lung Forces Change in U.S. Policy

U.S. lung-transplant rules are being temporarily eased to provide a case-by-case 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.

The executive committee of the Organ Procurement and Transplantation Network voted at an emergency meeting yesterday to create an interim classification for child lung candidates with exceptional cases. The rule will 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 a chance to accept them.

“That particular age may be difficult to justify from a scientific point of view,” committee Chairman John Roberts 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 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 for a lung from an adult.

The new policy, which took effect immediately after the 11-0 vote by the committee, allows children with exceptional cases access to adult lungs based on an allocation score used to prioritize adult lung transplants. Children younger than 12 aren’t typically assigned a score, only placed in one of two categories, which can keep them from receiving adult lungs.

Second Look

The committee discussed the possibility that children are being disadvantaged and at higher risk of death from the old policy.

“This case has caused us to shine a light on this process,” Stuart Sweet, a member of the executive committee and a pediatric pulmonologist at St. Louis Children’s Hospital, said at the meeting.

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 life-saving lung transplant, including 30 children ages 10 or younger, the OPTN said in a May 27 statement. In 2012 there were 11 lung donors from the ages of 6 to 10, the network said.

Scientific Judgment

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,” HHS Secretary Kathleen Sebelius said June 4 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 June 14.

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 the NIH website.

To contact the reporter on this story: Anna Edney in Washington at aedney@bloomberg.net

To contact the editor responsible for this story: Reg Gale at rgale5@bloomberg.net

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