Portrait of a bureaucratic nightmare: A little girl’s dying from cystic fibrosis and has three to five weeks to live unless she gets a lung transplant before then. The good news is that adult lungs can be modified for a child her age in a way that’ll save her life — except that, because she’s only 10, she’s not eligible for them. The “adult” list starts at 12; everyone younger than that goes to the children’s list, where lungs are much harder to come by. The question is, does Sebelius have the authority to suspend those age limitations and make the girl, Sarah Murnaghan, eligible for an adult transplant?
I honestly don’t know the answer. Murnaghan’s parents say Sebelius’s authority is clear; Sebelius herself claims that HHS’s lawyers have told her she can’t do it. A life hangs in the balance. On one side:
[U]nder existing policy all adults in the region with her blood type will be offered the lungs first, her parents say, even those more stable and with less severe conditions. The girl’s parents called for a change in the policy after their appeal was denied…
United Network for Organ Sharing, also a nonprofit under contract with the government, said a committee would review the policy and the public would have a chance to comment on any proposed changes. But spokeswoman Anne Paschke said any changes most likely won’t come quickly enough to benefit Sarah or others like her.
“The policy development process is not fast,” she said in an email to The Associated Press. “Organ allocation policies are created to transplant as many people as possible overall, result in the fewest waiting list deaths overall and result in the best possible survival overall. In developing policies, committees and the board weigh data, medical evidence and experience, and public input.”
On the other:
Dr. Stuart Sweet from St. Louis Children’s Hospital, who helped write the pediatric transplant system, said the case ‘tugs at his heart’ but that no system is perfect.
He said that if he changed the system for Sarah’s advantage, ‘there’s another patient, very likely an adolescent, who gets a disadvantage‘.
That’s the key question, right? If you waive the rules and bump her up the adult list, does someone else die because they’re forced to keep waiting? And the other question is, why is someone on the children’s list if a modified adult lung would save them? I don’t understand offhand using a fixed age cutoff instead of a qualitative assessment of each patient to maximize their odds of a transplant. If an adult organ would work for her and there are more adult organs to be had, that’s the list she should be on. Sebelius herself seems sufficiently troubled by this to have ordered a review of transplant protocols.
I’m flagging this for you now just because, with the attention paid to it by GOP congressmen in today’s hearing (Tom Price pressed Sebelius on it too) and with Drudge picking it up this afternoon, there’s a chance it’s going to be blow up in the media in the next few days. Now you’re caught up on the background. And no matter what happens, Ace is right that having the head of HHS telling Congress “someone lives and someone dies” is poisonous optics with the public already sour on ObamaCare. Good luck with your 2014 strategy, Democrats.