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.
Glossing over, for now, the issues with live organ donation (too often they don’t really try to make sure the donor is truly dead)... does EVERY or even MOST sets of lungs have someone to claim them? I thought there were a host of tissue matching issues. If there is competition over them that’s one story, but if most go to waste then how is that putting someone else at a disadvantage.
Bullsh*t
You undoubtedly trust the insurance company bureaucrat’s more than the government bureaucrat. I see them as the same.
Folks as old as you and I need to grow up and recognize health care resources are limited.
Actually, as it appears to me, she is the death panel.
She is the decider of life and death over the child of another.
She is Obama’s grim reaper.
This is the type of control Obamacare has given the us government over its citizens, and that is total control.
I bet she could find a way for Obama or Hillary!
Nobody’s spelling out the story here; it seems that the more crying the story, whether in a conservative medium or a liberal one, the vaguer its details get. How the bloom did Sibelius get to be queen already over the medical transplant system.
She was governor of Kansas, so it’s not like she just crawled out of the sewer. And HOW did she pull THAT off-Kansas is about as conservative as it gets! “Death Panels- Not just for Grandma anymore!” /sarcasm
That is a very good question.
An unelected, unanswerable bureaucrat is the decider of life and death of Americans.
That is really quite astonishing to ponder, HTRN.
All I can say is, if this was my daughter...
I think I’ll leave that thought right there.
It doesn’t matter.
First off, weighing who is more deserving of a procedure because of X factors is dangerous to the point of insane.
I would say the only factor that really matters is how close to death a potential recipient may be. If death is very close, then by all means, give that person the surgery that will stave off death.
And to answer your other question, how long would it take for the incurable disease to destroy the transplanted lung?
Long enough for her parents to love her another day.
Sometimes in this world, even a single minute is more valuable than anything else on the face of the earth, especially if that minute is the last one you’ll ever spend with the child that you made.
There is a comment under the story that says the doctors said go and the government said no.
Do you know if that is actually the case or not here?
You are right.
We can’t make everybody well. BUT, commies don’t need to be in charge of these decisions.
Thanks for putting a date on when the current policy was put in place. While relevant at the time, advancements in medicine over the past eight years, since this policy was established, make continued adherence to this policy unfair to those under 12 years of age, who now have a better chance at survival by modifying adult organs.
Thats true. The question is, is that person 3 weeks from death, or does he have more time?
If you waive the rules and bump her up the adult list, does someone else die because they’re forced to keep waiting?
Thats not a completely unknowable question. With a life in the balance, it seems like someone could put it on their agenda to look into it.
“The policy development process is not fast,”
Not going to let a little girl hurry up the process.
Here’s what bugs me about this:
“Please, suspend the rules until we look at this policy,” Rep. Lou Barletta, R-Pa., asked Sebelius during a House hearing Tuesday on behalf of Sarah Murnaghan, a 10-year-old girl who needs a lung transplant. She can’t qualify for an adult lung transplant until the age of 12, according to federal regulations, but Sebelius has the authority to waive that rule on her behalf. The pediatric lungs for which she qualifies aren’t available.
“I would suggest, sir, that, again, this is an incredibly agonizing situation where someone lives and someone dies,” Sebelius 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].”
That quote is from the excerpt in Morgana’s recent post of this story near the top of FR:
http://freerepublic.com/focus/f-chat/3027413/posts
If it is federal regulation blocking this from going forward, and if indeed the parents are asking that the reg be set aside for all children, not just theirs, even though theirs would obviously likely benefit or not benefit soon considering her state, then Sebelius must decide what is more important, a chance at a child’s life or regulations.
This brings in a larger question, at least to me, does the government have any business at all in issuing medical regulations such as this or any business in medicine at all? To me the answer is no. It should be up to the child’s doctor. If there is an adult lung available, she should in the very least have a chance at getting it instead of being regged out, and especially so considering her time is almost out.
It appears that Josef Mengele has been reincarnated in the form of our SS, I mean HHS Secretary Kathleen Sibelius. All that’s missing is an eyepatch or monocle, a lit cigarette inserted in a cigarette holder, and an armband with an embroidered Obama Fascist symbol.
“Its issues like this that remind me of how much I hate both political parties. If I was the child’s parent I’d be doing everything possible to save my kid even if it meant taking the life from those further up in line or having the public treasury spend every last dollar to save my kid...
As a Conservative I recognize life is unfair and the public treasury is limited..”
It is NOT both political parties withholding this life saving operation from this young girl. It is one DEMOCRAT. It is the Secretary of Health and Human Services. It is a mother who feels she has the right to dispense life saving steps only to those she feels worthy of receiving them!
Apparently this little girl is not worthy!
Leaving it to local hospitals/doctors might work if they did not have the ability to get the federal treasury cover their losses but in today's America that is not possible I'm afraid.
A parent will do anything and will spend every last cent of other peoples money to save their kid ...I understand that and would want to do it myself but I would hope that I could come to terms with the fact that its just not possible ...there is not enough money and life is just not fair.
You make my point thank you
Very good points and what a waste indeed if there was a match for someone under 12 near death, not allowed to be considered because someone over 12, and in no immediate danger, had priority due to an outdated regulation/policy.
That's the problem with allowing bureaucrats getting involved in these matters instead of charities, physicians and families.
The UK is a fine example.
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