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Tags health care incidents , health care issues , Kathleen Sebelius , organ transplants

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Old 9th June 2013, 08:15 AM   #41
Brainiac
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Originally Posted by JoeTheJuggler View Post
I suppose that's effectively what's going on, but technically, children are in fact on the waiting list for adult lungs. They're just behind adults. So this decision actually let her cut to the front of the line she was already in.

In other words, if we had a donor lung, and there were no compatible adults on the list, the existing rules would NOT require us to throw away the organ rather than try to transplant it into the first child on the list that's a match.
Wouldn't it be more accurate to say that this decision allows her to take her rightful place in line rather than forcing her to the end of the line?
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Old 9th June 2013, 08:30 AM   #42
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Originally Posted by Brainiac View Post
Wouldn't it be more accurate to say that this decision allows her to take her rightful place in line rather than forcing her to the end of the line?
No, because saying it's her "rightful place" is question begging.

How could making an exception to the rules be rightful? Is it only the rightful place for her? Isn't it just as much the rightful place of adults?

Being put at the front of the line can't be the "rightful place" of everyone waiting for an organ. The fact is, we have to use rational criteria to decide who gets them even knowing it's an effective death sentence for the others.

The problem is the court has the luxury of ignoring everyone else on the list and simply asking whether or not this girl deserves a chance.

Of course she deserves a chance, but so do others.

And based on rational criteria, it could well be that it is better use of very scarce donor organs for others to be ahead of her. (One of those criteria is that we want organs to go to those with a better chance of successful transplantation and survival than to those will a lower probability. The steps needed to fit an adult lung into a child reduces the probability of success, ceteris paribus.)

But again, the point I was making here is that it's not true that she was not on the list at all. It is false to think that if an adult lung became available that matched her tissue types and all that (close enough geographically to be viable, etc.), that didn't match any adults on the waiting list for a lung that the lung would be denied her. The current rules don't require throwing out a good donor organ when there is a need for it. In fact, the situation I just described is the fairly rare situation that transplant of adult lung(s) into a child recipient have in fact been done without making an exception to the rules.
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Old 9th June 2013, 08:43 AM   #43
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Originally Posted by WildCat View Post
Or we could just end the shortage of organs by paying the survivor's families for them.

But for some reason it's been OK to pay huge amounts of money to the doctors and hospitals and everyone in the supply chain but not to the estate of the person who actually donates, because that's unethical for some reason. Far better that thousands of people die while on the waiting list.
The reason is specifically that it could unethically create an incentive for one side of end-of-life decisions. Personally, I don't think that's a big harm to society. I think we err too much on the side of false hope and nonsense like what went on with the Terry Schiavo case.

Also, it could create a system where organs go to the highest bidder. (That problem could be solved easily enough by laws fixing the prices and strict punishments for any chicanery that effectively puts organs on auction.)

I think many families would find it distasteful too. I remember when my brother died (tragically at age 22), his brain stem was still alive, and we were able to keep him on life support to harvest a whole bunch of very healthy organs for donation. It felt weird enough collecting some life insurance money for his death. The thought of being paid for his organs kind of makes me cringe.

But I'm not totally against that idea. I think an opt-out donor system would be more effective and cause fewer unintended consequences.

Sadly, I don't think any policy that will improve the supply of donor organs is going to be implemented any time soon.

And even if it were, it wouldn't eliminate the need to make the life-and-death decisions we're discussing here. (For some organs, tissue type matching and the issue of transportation is incredibly important. Even with a much greater supply, there will likely be times when multiple recipients will be "competing" for the same organ when it becomes available.)
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Old 9th June 2013, 08:47 AM   #44
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Lightbulb

We are headed for a system whereby life saving treatments are allocated by political corruption.

Sure if it were my kid I'd do the same. Hate the game not the players.

The very rich can get what they want outside the country if necessary, so that's not really part of the argument.
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Old 9th June 2013, 08:48 AM   #45
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Originally Posted by WildCat View Post
When did they change the rules that allow wealthy people like Steve Jobs to register for transplants in multiple areas to greatly increase their chances of a transplant?
That's not what I was talking about. Mickey Mantle would have been ineligible because his liver damage was from drinking AND he also had a cancer.

In fact, you raise another example of one of the two complaints I have of the status quo (see post 35). Wealth or insurance status or differences in state Medicaid coverage of transplants should not be among the criteria--even if only a de facto one-- for getting an organ.
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Old 9th June 2013, 08:55 AM   #46
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Originally Posted by Abdul Alhazred View Post
Hate the game not the players.
I agree. I just wish the judge had the guts to do what's right even though he knew he only had to decide the case in front of him regardless of its broader implications.


Quote:
The very rich can get what they want outside the country if necessary, so that's not really part of the argument.
But we can control the effect of wealth on getting an organ within the U.S. That most definitely is an issue with our priority rules for patients waiting for an organ.

And I'm not sure of the details, but I suspect most other medically advanced countries have rules against a wealthy person being able to buy himself onto the top of the waiting list. I'm not saying it isn't possible, just that it's not nearly as simple a matter as you're portraying it, and the question of the effect of wealth is an important one.

ETA: And to return to the case at hand, we sure don't want it to be that the person who can afford the best legal team gets the organ.
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Old 12th June 2013, 09:09 AM   #47
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She is getting her transplant right now.
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Old 12th June 2013, 09:18 AM   #48
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Originally Posted by applecorped View Post
She is getting her transplant right now.
I hope the outcome is successful.

It's almost certain that her getting it required denying an organ to someone else in time to save a life.
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Old 12th June 2013, 09:32 AM   #49
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Originally Posted by JoeTheJuggler View Post
I hope the outcome is successful.

It's almost certain that her getting it required denying an organ to someone else in time to save a life.
Certain?

A life is being saved.
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Old 12th June 2013, 12:35 PM   #50
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Originally Posted by applecorped View Post
Certain?

A life is being saved.
Maybe. She might die anyway, and the lungs might not be salvageable.
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Old 12th June 2013, 12:48 PM   #51
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Originally Posted by Silly Green Monkey View Post
Maybe. She might die anyway, and the lungs might not be salvageable.
That applies to whoever recieves it
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Old 12th June 2013, 01:26 PM   #52
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Originally Posted by applecorped View Post
That applies to whoever recieves it
Yes, but the existing rules are based on the fact that the probability of success for transplanting an adult lung is greater when the lung doesn't have to be cut down or compressed into a smaller space.

We know ahead of time that the chances of success are not the same.

Again, I hope the outcome is good. Something like 18 people per day die on the waiting list for organs. Again, it's a virtual certainty that someone on the list that would have gotten a lung but for the court's decision will die waiting.

ETA: Again, the judge had the luxury of only answering the question as to whether or not this girl deserved a chance without having to answer whether the people ahead of her on the list deserve a chance.
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Old 12th June 2013, 02:29 PM   #53
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Good call Judge.
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Old 12th June 2013, 06:13 PM   #54
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Dying Girl Who Sparked Transplant Policy Change Gets Lung

Quote:
Sarah Murnaghan, the 10-year-old whose critical need for new lungs led to a temporary change in U.S. transplant rules, today received a double-lung transplant.

The Pennsylvania girl, who suffers from cystic fibrosis, was recovering last night after surgery that lasted about six hours at Children’s Hospital of Philadelphia, Tracy Simon, a spokeswoman for the Murnaghan family, said in an e-mail. The youngster had been on the transplant waiting list since December 2011 and may have had only a few weeks to live without an organ donation.

“We are thrilled to share that Sarah is out of surgery,” her family said in the e-mail from Simon. “Her doctors are very pleased with both her progress during the procedure and her prognosis for recovery.”
I wish her all the best.
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Old 16th June 2013, 08:29 PM   #55
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Originally Posted by WildCat View Post
Or we could just end the shortage of organs by paying the survivor's families for them.

But for some reason it's been OK to pay huge amounts of money to the doctors and hospitals and everyone in the supply chain but not to the estate of the person who actually donates, because that's unethical for some reason. Far better that thousands of people die while on the waiting list.
There is no system of logically consistent laws anywhere.

All legal systems are a mashup of half-baked ideas of morality codified into laws that are enforced with incredible inconsistency. Some are better than others, obviously., but it's pretty silly all-in-all.
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Old 23rd June 2013, 03:22 AM   #56
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Good news:
Pa. girl who fought for lung transplant now awake

Quote:
PHILADELPHIA (AP) — A spokeswoman for the family of a 10-year-old Pennsylvania girl who underwent a double-lung transplant after a national debate over the process of getting the organs says the girl has awakened from a medically-induced coma and is communicating by nodding.
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Old 23rd June 2013, 06:11 AM   #57
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Yay!
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Old 28th June 2013, 07:34 PM   #58
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http://www.politico.com/story/2013/0...ant-93582.html



The 10-year-old lung transplant recipient whose case shined a light on national organ transplant policy underwent surgery to transplant a second set of lungs earlier this month after the first lungs failed, the family revealed Friday.
Sarah Murnaghan, who suffers from cystic fibrosis, received a second set of lungs within days of her first operation on June 12, according to a statement released by her family.
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Old 29th June 2013, 06:16 AM   #59
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Originally Posted by applecorped View Post
http://www.politico.com/story/2013/0...ant-93582.html



The 10-year-old lung transplant recipient whose case shined a light on national organ transplant policy underwent surgery to transplant a second set of lungs earlier this month after the first lungs failed, the family revealed Friday.
Sarah Murnaghan, who suffers from cystic fibrosis, received a second set of lungs within days of her first operation on June 12, according to a statement released by her family.
I read this yesterday. I have to admit that this makes me somewhat uncomfortable. On the one hand, I'm glad this little girl is getting a chance to live a few more years. On the other, I'm wondering how many lungs she's going to get over the years to keep her going, when each set of those lungs might have gone to someone who would use them successfully for many more years than she will be able to, given that she has cystic fibrosis. Of course we don't know who they might have gone to; might have been someone else with a fatal disease. It's a tough call. We put a high value on children, but is it really right to put a higher value on her life than, say, a 40-year-old mother of three, or 50-year-old factory worker for that matter? That's what seems to be going on here to me.
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Old 29th June 2013, 07:08 AM   #60
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A person in the comments in one of the articles I read was saying the first set of lungs failed not because of the girl, but because of the lungs themselves and that the docs had said they would have failed in anyone.

Not so sure how true that is though - it's only someone in the comments section.

No matter what the eventual outcome of this whole thing is; IMO it's a really, really dangerous precedent.
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Old 29th June 2013, 11:59 AM   #61
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Originally Posted by Tiktaalik View Post
We put a high value on children, but is it really right to put a higher value on her life than, say, a 40-year-old mother of three, or 50-year-old factory worker for that matter? That's what seems to be going on here to me.
You make an important point, everyone's life is of equal value. What seems to be going on, I think, is that this girl's mom was very good at getting her story out there. I don't blame her, if it was my kid I would have done the same thing.

With that said, what I find disturbing is that a medical issue was decided by the media and the ignorant masses. The "powers that be" caved to the pressure and maybe someone else died because of it.

Perhaps the 40 year-old or 50 year-old do not have media savvy people in their group of family and friends who so much want them to live. Are we at the point where you live or die is based on how good your PR rep is?
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Last edited by Alt+F4; 29th June 2013 at 12:03 PM. Reason: typo
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Old 29th June 2013, 03:50 PM   #62
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Originally Posted by Alt+F4 View Post
You make an important point, everyone's life is of equal value. What seems to be going on, I think, is that this girl's mom was very good at getting her story out there. I don't blame her, if it was my kid I would have done the same thing.
I don't either.

And I also don't blame the judge who had the luxury of just asking the question as to whether or not this girl deserved a chance.

But we as a society ought not make these decisions this way. We ought stick to the rules we establish that are designed so that the precious organs be used for the patients that need them most AND have the best probability of success.

We certainly ought not make these decisions based on who gets the most press coverage.
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Old 29th June 2013, 03:58 PM   #63
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Originally Posted by applecorped View Post
The 10-year-old lung transplant recipient whose case shined a light on national organ transplant policy underwent surgery to transplant a second set of lungs earlier this month after the first lungs failed, the family revealed Friday.
Sarah Murnaghan, who suffers from cystic fibrosis, received a second set of lungs within days of her first operation on June 12, according to a statement released by her family.
What I find most disturbing about this is that the family and hospital lied to the media (or the media conspired in the lie) to mislead the public about the results of the first transplant.

And since the lawsuit succeeded in large part because the family made appeals to the public through the media, I don't think they can even fairly say that they wanted to keep this a private matter and not do it in front of the eyes of the world.
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Old 30th June 2013, 10:56 AM   #64
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The very reason this was medically opposed was the likelihood that this would indeed fail.
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Old 8th July 2013, 05:42 PM   #65
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The second set of lungs came from a pneumonia patient. The infected areas were removed but she's now developed pneumonia in the right lung.

http://abcnews.go.com/Health/sarah-m...ry?id=19607924
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