Posted on 06/04/2013 6:35:23 PM PDT by SeekAndFind
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.
THANK YOU! I have a terminal lung disease. Not every one that needs a tx is going to get one for one reason or another. The protocol is tough and designed to make the procedure as safe and successful as possible. There are more failures than we would like. A transplant is NOT a fix all end all.
My brother had IPD (I think that’s the acronym). He died last August. At 68 and on a vent there’s not much chance he would have made the donor list but I would have given him half of mine if they would have let me. He left a widow and three kids and five grandchildren. I miss him every day. So that sort of colors my reaction to this story. Every life is precious.
I have Pulmonary Fibrosis, terminal unless transplanted. I talk daily with many people of all ages that will NOT get new lungs for one reason or another. This story is heart breaking, but I and the other lung patients that I am in contact with AGREE with Sebelius.
BEATING HEAD AGAINST WALL! The issue is NOT that she is too young, there is not a lung that would fit that is available. If this were my child I would be fighting as well, even knowing that it was probably futile.
MONEY IS NOT THE ISSUE!
BING0! Everyone is not going to be well no matter what.
The lungs will NOT be tossed. I have many friends that are waiting for the call, hope that it comes before it is too late. Many of these people have small children to raise.
So that is what a “Death Czar” looks like. Also what a “killer” looks like. If Obamacare goes forward she will have as much blood on the her hands as Himmler and his little mustached boss.
I appreciate your post, Coldwater. I, too suffer from the same disease as this little 10 yr old girl, Cystic Fibrosis. I have such mixed emotions on this whole subject for the same reasons you gave. Also, the board that decides the “rules” on trasplants has been in place for a long time. So in effect we already have death panels. If she gets the lungs then perhaps a 12 yr old child who IS eligible dies. Maybe she is too sick to survive the transplant with adult lungs? There are no easy answers. God bless her and her family. I don’t blame them for fighting for their precious girl.
heartless bitch
As I understand it, any available adult lung could be prepared to fit her body.
The issue is that the federal regulations say that she does not qualify for an adult lung, so if one does become available, she can’t have it regardless.
You are free to agree with her, and I am free to disagree with her.
Yes, death happens.
But there’s no point in telling this girl she has no chance of survival because she’s 10 and not twelve.
Everyone in need deserves an equal chance at life based on the latest technology medical science has to offer. To simply turn our heads, and allow an outdated policy to stand, and ignore the fact that advances in medicine now means even younger patients are able to receive adult lungs is morally unacceptable.
I pray that same technology allows for increased availability, perhaps by growing organs outside the body, using parts of parts and etc.
God bless you, and all those on organ waiting lists. Hang in there. Advances in medicine are indeed increasing rapidly, and each new day offers new possibilities.
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