Kathleen Sebelius, the U.S. Secretary of Health and Human Services, says she doesn’t want to intervene in transplant decisions about a dying Pennsylvania girl when other children are just as sick.
10-year-old Sarah Murnaghan has been hospitalized for three months with end-stage cystic fibrosis.
Doctors say the girl needs an adult lung transplant (because pediatric lungs are so rare). They are confident that she would survive the procedure, but they say she has only three to five weeks to live.
Further complicating the issue is the fact that current federal regulations prohibit doctors from performing the expedited procedure. So Rep. Lou Barletta (R-Pa.) on Tuesday went directly to the HHS Secretary herself.
“Please, suspend the rules until we look at this policy,” Rep. Barletta begged Sebelius during a House hearing.
“I would suggest, sir, that, again, this is an incredibly agonizing situation where someone lives and someone dies,” she replied.
“The medical evidence and the transplant doctors who are making the rule — and have had the rule in place since 2005 making a delineation between pediatric and adult lungs, because lungs are different than other organs — that it’s based on the survivability [chances],” she added.
The Pennsylvania congressman responded by pointing out that the girl only has three to five weeks to live.
Sebelius would only say that there are currently 40 other people in Pennsylvania who are on the “highest acuity list” for lung transplants, adding that medical experts should make those decisions.
But relatives of young Sarah say they want the policy changed for all children awaiting a lung transplant, not just Sarah.
Sarah’s aunt Sharon Ruddock says older children should be eligible for adult lungs because so few pediatric lungs are available.
She says that would add just 20 children to the 1,600 people on the adult waiting list.
Sebelius has called for a review of transplant policies, but the Murnaghans says Sarah doesn’t have time for that.
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The Associated Press contributed to this report.