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Family of dying girl seeks direct donor for lung transplant

Murnaghan family

Sarah Murnaghan, 10, is still awaiting lung transplants. The plight of the girl, who has end-stage cystic fibrosis, has sparked controversy over organ donation allocation policy.

Family members of a 10-year-old Pennsylvania girl in desperate need of a lung transplant said Sunday that they are devastated that the nation’s top health official did not intervene with an immediate policy change that could save the dying child’s life.

In response, the parents of Sarah Murnaghan, who has end-stage cystic fibrosis, are appealing directly for a lung donation from any family who loses a loved one -- soon.

"Essentially, Sarah has been left to die," parents Janet and Fran Murnaghan said in a statement issued early Sunday.

On Friday Health and Human Services Secretary Kathleen Sebelius demanded an urgent review of the way lung transplants are allocated in the U.S., particularly for children, urging Dr. John Roberts, president of the board of directors for the Organ Procurement and Transplantation Network, or OPTN, to take a new look at the policy.

But Sebelius did not request specific action on behalf of Sarah and cited current policy that says decisions about organs for individual patients should be left to transplant doctors.

“Secretary Sebelius’ decision to not exercise her very clear authority under the law to intervene and mandate a variance that would help save Sarah’s life is devastating,” the statement from the Murnaghan family said.

“We are told her only hope is a direct donation from the public. We recognize how difficult the end of a person’s life is -- we are at that point with Sarah. And we must now ask for the single greatest favor any parent can, and that is to consider naming our child an organ recipient should someone lose the life of a loved one in the very near future.”

Anyone who would like to donate their loved ones’ lungs should designate Sarah as the lung recipient, the Murnaghan's statement asked. Transplant experts say that a directed donation is possible within the framework of lung allocation, as long as the donor organs meet existing criteria. 

Sarah has been on a waiting list for lung transplants since 2011. Her parents, who live with their three other children in Newtown Square, Penn., said they learned only last week of the details of a policy that they contend discriminates against their daughter and prevents her from receiving life-saving surgery.

Under current policy, children younger than 12 are offered pediatric organs that match their size and age immediately -- and sicker children receive priority. But they are prevented from receiving adult organs until after they’ve been offered to all adults and teens on the transplant list for a specific region -- even if the young children are sicker.

That essentially puts kids at the back of the line for adult organs, said the Murnaghans during an intense public relations blitz over the last week.

“We believe that Sarah should be triaged based on the severity of her illness, not her age,” Janet Murnaghan said.

Sarah has been on supplemental oxygen at Children's Hospital of Philadelphia for three months. Her parents say she may have just weeks to live unless she receives lung transplants. Family members have said that living lung lobe transplants aren't suitable for Sarah. They've received many offers from strangers who volunteered to donate part of their own lungs after hearing of the child's plight. 

Nationwide, nearly 1,700 people are waiting for lung transplants and 31 are children younger than age 10, according to OPTN data.

Transplant experts say the current policy was carefully devised based on best medical evidence to ensure that the greatest number of organs go to the greatest number of patients who need them.

For patients older than 12, a lung allocation score, or LAS, is used to determine who is most urgently in need of lungs. That replaced a system in 2005 that used waiting time to allocate the organs. Children are not part of that system.

Changing the policy is intentionally difficult, said Dr. Stuart Sweet, director of the pediatric lung transplant program at Washington University in St. Louis, who helped write the guidelines.

“It’s not designed to happen at the behest of a single patient,” he told NBC News.

On Friday, Sebelius urged “transparent, deliberative” action and said that the situation should encourage all Americans to become registered organ donors.