Sebelius Won't intervene in Dying girl's Transplant case

Sarah Murnaghan is 10 years and and suffering from end stage cystic fibrosis. She needs a lung transplant or she will die in 3 to 5 weeks. Her parent's have petitioned HHS head Sebelius to make an exception to the current transplant rule which prevents children younger than 12 from receiving organs until they have been offered to all adults and teens on the waiting list - EVEN if the child is sicker! So an 80 year old smoker could get priority.

All Sebelius has to do is sign a waiver suspending the policy until it can be further reviewed - thereby opening the option for Sarah. But, she argued that the system is in place to ensure "fairness" for all. Um, not really.

At hearings regarding the subject, she was, quite frankly, smug in her "rules are there for a reason" attitude.

“I’m begging you … Sarah has three to five weeks to live. Suspend the rules until we look at this policy,” Rep. Lou Barletta, R-Pa., told Sebelius at a session of a House Education and Workforce Committee hearing.

“Forty people in your home state are waiting for a lung,” Sebelius countered in the exchange in which the pair spoke over each other.

vitals.nbcnews.com...

It's interesting that these rules are so black and white to her, yet she managed to find the gray on soliciting funds for Obamacare.

Sebelius solicitation of Obamacare outreach funds raises eyebrows

blogs.marketwatch.com...

Just saw a news report where a federal judge has ordered Sebelius to make the exception. She will be added to the adult transplant list. I really hope it works.

Tough issue.
Fundamentally it means though that for everyone who gets a transplant, somebody else doesnt.

And I'm not sure that "the one who yells loudest" is the most appropriate way to determine the recipient.
I'd suggest that some kind of rules should be made up in advance to determine this. And the rules should be stuck to even in the face of politicians trying to interfere.

And of course rules do exist.

But, if the rules are no good, then they need to be changed. I cant decide if the rules do need to be changed, but in the meantime I'll stick with the comments I made above.

reply to post by alfa1


I agree there need to be rules and the squeaky wheel shouldn't get the grease. But the rules, as they are now, are inherently unfair to children for whom fewer organs become available.

Allowing them to be "on the list" for adult organs seems like a no-brainier.

I hate to say this but a lung transplant will not cure this child. She has Cystic fibrosis even if she gets the transplant the disease will just move on to her liver, pancreas and intestine. All the transplant will do is prolong her life by a few years. I think the law shouldn't be changed because it isn't right to deny someone a lung transplant that it will cure so someone can get one that it will not cure.

reply to post by buster2010

Well, thanks for that info. I didn't understand the progressiveness of the disease. Still, A few more years is something. And she's not really preventing someone else from being saved - just moving onto the adult list where there is more chance of organ availability. Perhaps bumping someone who is in less dire condition.

What's the problem with getting a lung anyway - or ANY body part. After your dead you won't be needing it. They should make it mandatory that once your dead your are forfeit to your body parts - because after all.. your dead - you don't have any legal rights as a living human being. If it's going to help someone - they should just be allowed to take it, provided the left over remains are not abused.. say one or two body parts per person, then the family can have the burial. I can live with that.

I'm sure there are at least 100 10 year olds a day that gets killed they can take the lungs from. The problem is People are Selfish.

reply to post by Maluhia


Sad and heartbreaking story, but at this stage of the disease the chances of the littler girl to even survive surgery are very low, still the disease will no go away as this is a gene problem, is other factors affecting the littler girl than just her lungs.

If she gets the transplant by any chance and get to survive the surgery, she still have to deal with deterioration of her organs anyway, as this disease will not only affect the lungs but also the kidneys.

Sad, sad story.

reply to post by marg6043

Yes, I understand that now, but it may buy her a few years - and more time for advancements in medical science.

Hopefully, at the very least, this case will bring attention to the unfairness of the list towards children so maybe changes can be made.

Also, the girls survival chances didn't seem to be a consideration in Sebelius's non-intervention - just the rules are rules argument.

reply to post by Maluhia


I hope so, like you I agree that children should be given priority when it comes to transplants as they still have a life to live, it is not fair when somebody with lung disease that have damaged their lungs due to life choices get to have a second chance.

Originally posted by JohnPhoenix
What's the problem with getting a lung anyway - or ANY body part. After your dead you won't be needing it. They should make it mandatory that once your dead your are forfeit to your body parts - because after all.. your dead - you don't have any legal rights as a living human being. If it's going to help someone - they should just be allowed to take it, provided the left over remains are not abused.. say one or two body parts per person, then the family can have the burial. I can live with that.

I'm sure there are at least 100 10 year olds a day that gets killed they can take the lungs from. The problem is People are Selfish.

edit on 5-6-2013 by JohnPhoenix because: sp

It's not that people are selfish some don't do it because it goes against their religions. Some Orthodox Jewish interpretations forbid organ donation because it is viewed as mutilating a corpse. Against broad religious acceptance of organ donation to aid the sick stand three major exceptions: Jehovah’s Witnesses, Christian Scientists, and the Shinto faith.

Originally posted by Maluhia
reply to post by marg6043

 

Yes, I understand that now, but it may buy her a few years - and more time for advancements in medical science.

Hopefully, at the very least, this case will bring attention to the unfairness of the list towards children so maybe changes can be made.

It's got nothing to do with "unfairness of the list"
When dealing with transplants you have to make some tough decisions because viable organs are not infinite.
Hopefully this does not come out wrong..

What makes this child any different then the others that are in the same situation ?
Why should she get this chance when others don't and how do you tell the parents of another child dealing with the same their is no move left.

One of the problems with cystic fibrosis is that while the life expectancy have grown in the last century it all depends on the severity of the disease and what part of the body is affected the most.

Saldy getting a transplant will only extend life a bit and not for long term.

And in the case of the littler girl been on the last stages of the disease the surgery alone could kill her..

reply to post by opethPA

The argument is not really about pushing one patient ahead of another - This is about a dying child not being allowed to go on the Adult organ list where her chances of getting an organ improve. Any child in such a situation should be given that chance.

i can tell you that if my heart was failing, i'd never get a transplant because my chronic disease so why should she be any different? it's how it is for all of us with chronic incurable diseases regardless of age, why give us 5 more years when someone healthy would be given 20, 30 or more years of life with the same organ?

Originally posted by Maluhia
reply to post by opethPA

 

The argument is not really about pushing one patient ahead of another - This is about a dying child not being allowed to go on the Adult organ list where her chances of getting an organ improve. Any child in such a situation should be given that chance.

In a perfect world where their are unlimited viable organs you are right but sadly that is not reality.

that's a real toughie for sure.. ..just to let people know, even if you die from cancer you can still donate your corneas, give someone the gift of sight...unless the cancer was in that area , I was told that it is really rare that they can't use the corneas.

Originally posted by Maluhia

The argument is not really about pushing one patient ahead of another -

The parents might say that, but frankly I think they're lying.

“All we want is fair treatment for all of these children...

Everyone knows perfectly well that they're only doing this to save Sarah, pushing her and her alone to the top of the list, and NOT as an abstract notion of increasing fairness for all children.

I can understand their motivation in doing this, but it doesnt do them any credit to lie about it.

Originally posted by Maluhia
Just saw a news report where a federal judge has ordered Sebelius to make the exception. She will be added to the adult transplant list. I really hope it works.

Ah yes I see that.
A judge has overridden best medical practise.

...troubling, and perhaps precedent-setting, for a judge to overrule that medical judgment, and predicted a run to the courthouse by patients who don’t like their place on the waiting list.

So I read that a total of 31 children are now included in the "adult" list. So now there's 1731 people in total who'd like to have a lung. The judge's ruling might not actually make any difference at all.

How do you think the parents are going to feel when the OPTN still dont give her a lung before she dies.
Think they'll sue?

reply to post by alfa1

Everyone knows perfectly well that they're only doing this to save Sarah, pushing her and her alone to the top of the list, and NOT as an abstract notion of increasing fairness for all children.

They're not asking to push her to the top of the list -- just asking for a rule change regarding the way children (all children) are considered for transplant. i.e. to be added to the adult list in extreme cases, where more organs are available.

And yes, they are doing it to try to save their child. I'm going to guess you're not a parent. I might rip someone's organs out myself to save my kids....lol.

Do you have a link to that Judge's decision story?

Originally posted by Maluhia
reply to post by opethPA

 

The argument is not really about pushing one patient ahead of another - This is about a dying child not being allowed to go on the Adult organ list where her chances of getting an organ improve. Any child in such a situation should be given that chance.

Yes it is, you want to push this child ahead of others, because her story is heartbreaking. This story touched you, but other tragedies strike families all the time. If she receives a lung, it denies someone else, what part of this do you not understand. Everyone is equally important, and just because her family cried to the media does not make her any more important. A dying child, a dying adult, to you, apparently it makes some difference, but they are both human beings. What part of "we are all born to die" do you not understand?