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.
Sarah Murnaghan (Photo: Change.org)
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.
Update: Court Orders Sebelius to Suspend Death Panel – Place Dying 10 Year-Old Girl on Transplant List
The Politico reported:
A federal judge has ordered Health and Human Services Secretary Kathleen Sebelius to allow Sarah Murnaghan, a 10-year-old in Pennsylvania dying of cystic fibrosis, to be moved to the adult lung transplant list. Normally federal policy prevents children younger than 12 from receiving donated adult lungs, but Sebelius has been under pressure to change the policy.
The parents of the girl asked the judge on Wednesday to order Sebelius to alter organ donation rules so that the dying child has a better chance of receiving new lungs. They say she is running out of time. U.S. District Judge Michael Baylson granted a temporary restraining order to exempt Murnaghan from the current policy, and there will be a hearing on June 14.
Sebelius has come under intense pressure in this case, which is receiving media and online attention. Some medical ethicists, however, say that while the organ allocation policy may well need to be reviewed and changed, they worry about making case-by-case decisions based in part on emotional media attention.