Bloomberg News

Dying Girl Seeking Adult Lungs Wins Temporary Rule Exemption (1)

June 06, 2013

The family of a 10-year-old Pennsylvania girl who needs a lung transplant to survive won a temporary court order making her eligible to seek an organ from an adult donor after U.S. Health and Human Services Secretary Kathleen Sebelius denied her family’s request.

Janet and Francis Murnaghan, whose daughter Sarah suffers from cystic fibrosis, filed a lawsuit yesterday in federal court in Philadelphia seeking to bar Sebelius from enforcing a department rule giving adults and adolescents priority over children younger than 12 for adult lungs. The rule puts children at the “very back of the line for lungs from adults” regardless of medical urgency, according to the complaint.

U.S. District Judge Michael Baylson granted a temporary restraining order making the girl eligible for a transplant from an adult donor. Baylson set a hearing on a preliminary injunction for June 14.

“The public interest here is significant,” Baylson said at a hearing yesterday. “It’s a better exercise of my discretion to grant the TRO and to do it right now.”

Baylson said his ruling could affect 16 other people in the U.S., though it isn’t binding on other judges.

“My entering a TRO in this district only applies to this area,” said Baylson, a senior judge for eastern Pennsylvania.

Court’s Jurisdiction

Baylson said another person in southeastern Pennsylvania may benefit from his decision because it’s within the jurisdiction of his court.

In a letter today, Sebelius asked the Organ Procurement and Transplantation Network, the group charged with overseeing organ allocations, to comply with Baylson’s order.

OPTN created a second candidate record for Murnaghan last night with a birthdate that makes the system treat her as a 12-year-old, Sebelius said in the letter. The girl’s original record remains active so she retains her priority for pediatric donors, according to the letter forwarded by Tait Sye, a spokesman for HHS.

Murnaghan’s family said in a statement after Baylson’s ruling that they are hopeful for the first time in months.

‘10 Days’

“For us, this means that for the next 10 days, Sarah’s placement in the queue for adult lungs will be based on the severity of her illness, and she will not be penalized for her age,” the family said in a statement. Sarah’s current lung allocation score is 78, the family said. The measure, used by OPTN to prioritize patients, is determined on a scale of zero to 100, the network said on its Website.

The Murnaghans had argued in their complaint that application of the Under 12 Rule unfairly disqualifies children in Sarah’s condition simply because of their age.

“If Sarah does not soon receive a set of donated lungs, she will die,” the Murnaghans said in their complaint.

Sebelius told Congress on June 4 that she won’t sign a waiver allowing Sarah to sidestep the policy because there are people just as sick waiting for a lung transplant, including three other children in Philadelphia. Sebelius, at a budget hearing of the House Education and Workforce Committee, told lawmakers she prefers a process set by “medical science and by medical experts” rather than politicians and policy makers.

Lawmakers

U.S. Representative Patrick Meehan and U.S. Senator Pat Toomey, both Pennsylvania Republicans, asked Sebelius in a June 3 letter to set aside the policy on an emergency basis or direct OPTN to do more research about the suitability of adult organs for children.

Yesterday’s order means Sarah would be eligible for a lung transplant if an organ becomes available immediately, Stephen Harvey, an attorney for her family, told Baylson at the hearing. Baylson’s decision wouldn’t mean she’s guaranteed to receive one, Harvey said.

Meehan yesterday applauded the decision for protecting Sarah’s constitutional rights and giving her “a fighting chance at life.”

“We will continue the effort to ensure that the same is true for children across the country in a similar situation,” Meehan said in a statement. “The arbitrary policy discriminates against Sarah and other children under 12 years of age. These decisions should be based on need and sound medical judgment, not age.”

‘Tragic Situation’

Lawyers for the 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.

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.

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’s now in the intensive care unit at Children’s Hospital of Philadelphia. She will die within weeks without the transplant, according to the complaint.

Samuel Goldfarb, a pediatric pulmonologist at Children’s Hospital who’s been treating Sarah, testified yesterday in court that doctors considered intubating her last week when her condition worsened. She has since improved slightly, he said.

‘Scarce Resource’

“Donated lungs are a scarce resource for persons in need of them, but the scarcity is much greater for children than for adults,” according to the family’s complaint.

The pool of lungs donated from adults is more than 50 times larger than the pool of lungs donated from children, according to the complaint.

The Organ Procurement and Transplantation Network, created by Congress, operates as an independent nonprofit group under federal contract to manage transplant needs. Almost 1,700 people nationwide await a life-saving lung transplant, including 30 children ages 10 or younger, the network said in a May 27 statement. Last year there were 11 lung donors from the ages of 6 to 10, the network said.

A petition started by the Murnaghan family on change.org seeking a revision in the lung-allocation policy had more than 340,000 signatures as of yesterday. The family is pursuing other options including a public outreach for a directed set of lungs, according to the complaint.

The case is Murnaghan v. U.S. Department of Health and Human Services, 13-cv-03083, U.S. District Court, Eastern District of Pennsylvania (Philadelphia).

To contact the reporter on this story: Sophia Pearson in Philadelphia at spearson3@bloomberg.net

To contact the editor responsible for this story: Michael Hytha at mhytha@bloomberg.net


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