Sebelius Won’t Intervene in 10-Year-Old’s Fight for Lung Transplant

June 4, 2013 - 3:55 PM

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Health and Human Services Secretary Kathleen Sebelius (AP Photo)

(CNSNews.com) – Health and Human Service Secretary Kathleen Sebelius said Tuesday that she would not intervene in a decision that bars a 10-year-old girl – given just weeks to live – from getting a lung transplant.

During a House hearing on HHS’ FY 2014 budget request, Rep. Tom Price (R-Ga.) urged Sebelius to intervene in the case of Sarah Murnaghan, who suffers from cystic fibrosis and could die within weeks without a lung transplant, but is considered too young for one according to rules adopted in 2005 by transplant doctors.

“The reason she’s unable to receive that right now is because of an arbitrary rule that says if you’re not 12 years old, you aren’t eligible to receive an adolescent or an adult lung,” he said.

“Madame Secretary, under section 121.4 D, you have the opportunity. It says, ‘Unless the Secretary directs otherwise based on possible risk to the health of patients for public safety.’ Madame Secretary, I would urge you this week to allow that lung transplant to move forward,” Price said.

“Dr. Price, I appreciate your input. First as a mother and a grandmother, I can’t imagine anything more agonizing than what the Murnaghans are going through, and I talked to Janet Murnaghan, the mother of Sarah about this case. What I have also done is look very carefully at the history of the rules around lung transplant and organ transplant,” Sebelius said but was cut off mid-sentence.

“With all due respect Madame Secretary, I’m going to reclaim my time. It simply takes your signature … a study I know you have ordered, and I appreciate that, but a study will take over a year. This young lady will be dead,” Price said.

Rep. Lou Barletta (R-Pa.) also pressed the secretary on Murnaghan’s case, asking “Why are we going to let a little 10-year-old girl die because she is 10 and not 12? Sarah’s at the top of the pediatric list - those who are 11 or younger. If Sarah were 12, she’d be at the top of the adult list.

“Transplants should be based, I believe, on the severity of the illness and not the person’s age, and I know you agree with that because you’ve asked OPTN to please review the policy,” Barletta said.

“Sarah’s parents aren’t asking for special treatment for their daughter … They’re asking for an equitable organ transplant system, and you are the one person who has the authority to suspend the current policy until we are confident that children have equal access to lifesaving treatment and aren’t discriminated against because of their age. We wouldn’t do it for any other reason,” he added.

“I’m begging you. Sarah has three to five weeks to live. Time is running out. Please suspend the rules until we look at this policy, which we all believe is flawed,” Barletta said.

“Well I would suggest sir that again this is an incredibly agonizing situation where someone lives and someone dies,” Sebelius responded.

“Based on their age, based on their age!” Barletta shouted.

Sebelius explained that she was told by transplant experts that the medical evidence and transplant doctors behind the rule made “a delineation between pediatric and adult lungs – because lungs are different than other organs – that it’s based on the survivability.”

“This is different. Sarah’s case is different. Doctors have said that she could survive with an adult lung. It could be modified to save her life. Why wouldn’t we do it? We do so much bullcrap around this place, and we have the chance to save someone’s life, and because of some kind of—there’s no logic to this,” Barletta said.

“Forty people in your home state are waiting on a—“ Sebelius said before Barletta cut her off.

“But she would be first if she were 12,” Barletta said.

“Sir, there are 40 people in the highest acuity list waiting for a lung in Pennsylvania,” Sebelius responded.

“But Sarah would be at the top of that list,” Barletta said before his time expired and the committee had to move on to other members who wanted to question the secretary.