HHS Secretary Sebelius' Call for Review of Transplant Rules Means Girl Is 'Left to Die,' Family Says

June 3, 2013— -- The father of a 10-year-old Pennsylvania girl fighting to get the lung transplant she needs but has been denied because of her age called Health and Human Services' Secretary Kathleen Sebelius' decision to review child transplant policies a decision to do "not much of anything."

Sarah Murnaghan, 10, 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.

If she doesn't get new lungs, her doctors say, she might not even make it to 11.

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."

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.

"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.

"We are not asking for preference for Sarah, we are asking for equality," Sarah's mother, Janet Murnaghan, said in an earlier press release. "We strongly believe Sarah should be triaged based on the severity of her illness, not her age."

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.

"It's a very disheartening thing to hear and read about because you've got a child in desperate need of a transplant to survive ... and people less qualified in terms of severity are able to get that organ instead of this child because of what's in place," Doshi said. "From a medical standpoint, we look at these types of hurdles and obstacles and sometimes get frustrated with the system."

Sarah's family started an online petition at change.org to persuade the Organ Procurement and Transplantation Network to change its policy. So far, they've gathered about 40,000 signatures.

The organization, which falls under the Department of Health and Human Services, responded Monday that it can't make an exception for Sarah.

"OPTN cannot create a policy exemption on behalf of an individual patient, since giving an advantage to one patient may unduly disadvantage others," the statement read.

Doshi said he thinks children under 12 years old should be considered with the adult patients and awarded organs based on how severe their conditions are. Adult lungs may not perfectly fit child patients, but they can be used to save multiple children. One of his 6-year-old patients got a partial lung donation from her mother several years ago in a last ditch effort to save her life.

Although adults make up the majority of the lung transplant waiting list, NYU Langone Medical Center's head bioethicist Art Caplan said children should be given priority if they're sicker than those adults, in part because children should be able to get more healthy years out of the lungs than adults.

"At the end of the day it's not so simple as kids versus adults," Caplan said, adding that chances of survival with the new organ and many other issues factor into the decision. "I think, however, there is a case that would say ... most Americans -- as donors -- would want to give priority to children."