Skip to comments.Sebelius: I canít suspend the lung-transplant rules for a dying 10-year-old
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.
Are you saying any lung can be accepted by the next donor? You seem to lack facts to back this up, and usually there are blood typing and tissue typing issues, you can’t just fix it all with cyclosporin.
donor -> donee
You seem to assume things not in evidence. Well if you can invent circumstances so can I. We deal with discrete, real cases, not some grey mush of humanity en masse.
And let a bureaucrat make decisions that we should be making with and for our loved ones?
Joe, that's absolutely disgusting!
An insurance company has never been involved in a life and death decision that I've been a part of. Only the doctor, other relatives and myself.
If you're willing to abdicate that decision to the federal government, shame on you. Are you a man? Or a bystander?
May God bless and keep this little girl. May He also have mercy on all of us for our omissive complicity in permitting the evil which threatens her to persist.
The real scenario is desperate parents doing everything for their child. They were undoubtedly shot down up the chain of command (so to speak) and are appealing to the public sympathy. I don’t blame them but its not good government nor good policy..
Yes it is, and yet joe may/will drone on and on with his hypnotic spell. Beware. At a certain point it becomes clear that discussion is not clarifying anything at all.
GOD I hate this damned administration more and more every day.
Patch the leak and fix the system. Why are these mutually exclusive? You seem to be enslaved under the spell of, well, something other than the good Lord, who really would look at everything down to the last detail.
I wont drone I have no time and little regard for idiots..
Alright. I see that it is a network, of doctors I am assuming here, working under contract with the HHS, which means that HHS is ultimately in charge in terms of legal authority.
So that says to me Sebelius is the person who decides if the federal regulations are more important than this child’s chance at life. Doctors say go, government says no.
It not only looks bad, it is bad. HHS being involved gives the regs force of law, and that force is essentially what is keeping the child from having access to an adult lung which could be modified.
I see it like this. Since government is involved via the contract, if the government makes the decision that its regulations are more important than giving this child a chance, then they are saying that their regulations are more important than her life, and thus are a death panel.
You ask if its fair to others who may benefit from the same lung? That’s hard to say for certain, fair is subjective, elusive and may not even exist at all. But I ask is it right to deny this girl an opportunity at an adult lung because she doesn’t meet the regulated age requirement? I my answer is no.
By your personal attack you prove what “basis” you are coming from. It is that of hell.
What if there weren’t, though. These clowns seem to be saying “no way it could happen” not “this lung ought to go to this adult that is proven to be able to use it now.”
Amen brother, and if it be God’s will, this child will persist. Of that, have no doubt.
The medical philosophy "First do no harm" was tossed aside, now it's "First do them in and don't even blink", kind of like Mao who just kept murdering. Keep progressing and killing until we reach leftist "utopia".
Alright. I say if there is no adult recipient that matches, then give her a shot. Now back to my question. What if there is an adult that matches and would have a higher rate of survivability. Do you move this girl ahead of that adult?
Well then we have a genuine triage question and that’s another story. But these bureaucrats seem paralyzed from being able to breach a line which... who invented it anyhow? Doctors in private practice?
When Obama's members of the likely "death panel" were listed, I read some of their comments. Both Cass Sunstein and Ezekial Emanuel (Rahm's dr. brother) are on the same page. I can't remember which said it, but think Sunstein was the one.
Paraphrased, he said expensive procedures could not be wasted on children before adolescense because the state did not have enough invested in them to make it good policy to spend a lot to save them--just like old people are too old to be worth it. Gr. Britain already denies dialysis to children and to adults over 55. However, they have foundations that help provide it for as many children as they can until they get a transplant. In this case, however, it is the govt. policy of prioritizing the organs that throws this little girl out.
Expect more of this.
If I may, I say it would depend upon a number of factors. Match and etc., but especially which one is in the most danger at the time an organ became available.
Here is a link to the policy: http://optn.transplant.hrsa.gov/PoliciesandBylaws2/policies/pdfs/policy_9.pdf
This is the organization responsible: http://optn.transplant.hrsa.gov/
Th Grand Executioner has spoken, so it shall be. Death before your time.. ObamaCare delivers.
Things change... That was 8, almost 9 years ago. A very long time in the medical field.
And then eight years passed and nobody thought to update it yet. Maybe this falls in the debatable area, but if all concerned directly with the proposed procedure are copacetic with it (even the ailing girl)... why not, for a set of lungs that would otherwise get tossed.
The govt created the economic environment, and that’s not a good reason.
Yes, I agree that this is a two sided coin. Seems like the face of death is on each side as well, and that the coin is flipped for those that cannot produce or have yet to produce.
What I can see of this situation is that we have put real life Nazis in charge of the most important aspect of each of our lives, and that aspect is our health.
This is going to turn out terribly badly.
I bet if the girl was the daughter of a Dem bigwig it would have been suspended and never made the news.
Instead of showing LEADERSHIP and FINDING A WAY, all we get is the typical beaureucratic BULL$HIT.
Another worthless POS politician.
No doubt. The commies always take care of their interests.
If as asserted by you, there may be thornier triage questions. But it sounds like it’s being taken as all or nothing, rather than as maybe.
That is not how it works..the person most likely to die gets it first..which would be the girl who you will not allow on the list because you like "the rules" even though you don't understand "the rules". But hey..rules rule and government snobs love them some rules..more than little girls apparently.
Sure ya can! The Obama administration bends the rules to suit it’s thug agenda all the time....you mean you can’t/won’t bend them for a peon citizen.
So she CAN give waivers to political friends like unions, but she WON’T save a child’s life.
The rule of laws?
Nope. The law of rules.
This child has been on the list for over 18 months. How many opportunities at life were missed due to this outdated policy??? Why do you insist she die for some hypothetical, when she needs a lung now?
Advancements in medicine allow for the transplantation of adult lungs in children younger than 12. It is the height of obstinance to not to take this into consideration when deciding who gets an organ, and who doesn't.
We don't know if there is someone who will miss out if she gets on the list. We do know she will die very soon if she doesn't. At the very least, she and others like her deserve an equal chance.
Maybe you should ask to be part of the next IRS Star Trek episode...you make a perfect Borg impression. Like the collective much, outdated rule lover?
My brother needed a lung last August. I’m not blaming anyone for the fact that he didn’t get one. There were a lot of factors which kept it from happening. He died. Maybe that’s why I am paying attention to this story. Also, I’m Catholic and to me, dying is not the worst thing that can happen. We have had other losses in our family. Medical science is wonderful but God is awesome. He ultimately is in control. I just see this as a distraction from some more significant reasons to bash on Sebilius.
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.