Lawyers Push for Federal Rule Exception to Save Girl

June 4, 2013— -- Lawyers for 10-year-old Sarah Murnaghan, who has been denied a lung transplant because of a controversial federal policy, say Health and Human Services' Secretary Kathleen Sebelius' decision to review the policy -- but not in time to save Sarah -- is unconstitutional.

Sarah would be at the top of the adult lung transplant list if she were 12, because she only has weeks to live and a lung transplant would as-good-as cure her of cystic fibrosis.

Organ Donation: Should Younger Patients Get Better Kidneys?

The Murnaghan family is fighting a little known organ transplant policy that is effectively pushing Sarah to the bottom of the adult transplant waiting list because it mandates that adult lungs be offered to all adult patients before they can be offered to someone under 12 years old.

Law firm Pepper Hamilton LLP wrote a letter to Sebelius on Monday calling the policy "unfair, arbitrary and capricious" and saying that Sebelius's failure to make an exceptionis is a violation of Sarah's constitutional rights to "due process" and "equal protection," according to a family statement.

Sarah's father, Fran Murnaghan, of Newtown Square, Pa., told ABC News Sunday that Sebelius' mandate for review of transplant policies would not deal with current cases in a timely manner, nor deal with what he characterized as an unequal system that discriminates against children younger than 12.

"Sarah is being left to die," Murnaghan said. "Not only Sarah, but there are many other children in the same situation.

"[Sebelius] clearly has the authority to do something now, and she has decided to do, to be honest, not much of anything," he said. "In my opinion, she has kicked the can down the political road."

"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 family said in a prepared statement.

Sarah's family is asking the public to "consider naming our child an organ recipient should someone lose the life of a loved one in the very near future," they said in the statement.

"Our little girl, who loves writing music, making crafts, and playing with her siblings can honor someone's life by living on herself," they wrote.

Under the existing policy, children like Sarah are forced to wait for a lung transplant, despite her life-threatening illness.

In a letter sent Friday to the Organ Procurement and Transplantation Network, Sebelius asked for the review to consider changing the policy to make more transplants available to children, The Associated Press reported.

Sebelius called the incongruity between donors and children in need of transplants "especially stark."

There were only 11 lung donors between 6 and 10 years old and only two lung transplants in that age group in 2012, according to an Organ Procurement and Transplantation Network statement.

Patients with cystic fibrosis, a genetic condition that damages the lungs, have an average life expectancy of 31 years old, said Dr. Devang Doshi, a pediatric lung specialist at Beaumont Children's Hospital in Michigan who has not met Sarah. But if they get a lung transplant, the condition is essentially cured.