Posted on 06/04/2013 8:23:51 PM PDT by Morgana
HHS Secretary Kathleen Sebelius is refusing to intervene in a case of a young girl who needs a lung transplant as doctors have only given her weeks to live.
From a local news report:
The Newtown Square girl has been hospitalized for three months with end-stage cystic fibrosis.
Sarah is not giving up hope. She wants to be a singer, but needs a lung transplant to live. Her parents have been with her constantly while she waits at The Children’s Hospital of Philadelphia.
“She worries that she’s dying, because she’s not — she’s a smart kid. And she says to me, ‘Mommy, will I wake up tomorrow morning?’” said Janet Murnaghan.
Organ donation rules require adult lungs to be offered first to people over the age of 12. Sarah’s parents say that’s not fair.
“Rules are meant to be broken. My child is not a statistic. She’s a person,” said Janet.
Sebelius says she doesn’t want to intervene in the transplant case when other sick children are dying, but Sarah’s family says hey want the policy changed for all children awaiting a lung transplant, not just Sarah.
Sarah’s aunt Sharon Ruddock says older children should be eligible for adult lungs because so few pediatric lungs are available.
She says that would add just 20 children to the 1,600 people on the adult waiting list.
Sebelius has called for a review of transplant policies, but the Murnaghans says Sarah doesn’t have time for that
Sarah’s parents have launched a public relations campaign to try to get the rules changed and an online petition in support of Sarah has been created with thousands of supporters.
Congressman Patrick Meehan stepped in and sent a letter to the Secretary of Health and Human Services requesting that she address the tragic unfairness and act to give Sarah a chance at life.
Meanwhile, members of Congress asked Sebelius during a congressional hearing about Sarah’s case:
Health and Human Services Secretary Kathleen Sebelius rebuffed an appeal from Rep. Lou Barletta, R-Pa., on behalf of a girl who needs a lung transplant but can’t get one because of a federal regulation that prevents her from qualifying for a transplant.
“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].”
This sibelius subhuman is a degenerate ghoul. Her soul is black.
Even a stopped clock is right twice a day.
I am disturbed by the number of FReepers engaged in thoughtless name calling on the issue.
Transplanted organs are a (very) scarce resource, which makes the decision a lot more complicated than "let the patient/family/doctors decide."
The problem is, if she gets an adult transplant and it doesn't work (because it's riskier), that would not just affect her and her family. It would also affect the other patient who would have otherwise gotten the transplant.
Transplanted organs are a scarce resource, and these decisions are often a zero sum game (one patient getting a transplant means that another does not). There is obviously room to debate whether the particular regulations in place should be improved, but that doesn't mean that we should support government bureaucrats overriding the rules that are in place, in order to move a patient up in line because of media and/or political pressure.
I don’t think we’ve established that any such choice in recipients is in play here. Do you have specific information on this case or are you speculating?
Yep. The first high-profile instance of a death panel under 0bamacare, personally autographed by Kathleen Sebelius.
After compatibility, it should be a matter of size, not age. The parents are not asking for their daughter to bump adults, but rather for adults not to bump her - for her to get in the adult line and wait her turn, in other words.
There would be 1600 people ahead of her. I don’t know how fast the line moves, but she would certainly go before the 1601st. That is where the other considerations come into play: likelihood of it working, etc. She could take the place of someone with a better chance.
I’m glad I don’t have to make these decisions.
That’s as I understand it as well. Forgive me for possibly mischaracterizing the debate, but what I’m getting here is the aroma of “it’s too bad that the girl will die, but the important thing is that The Rules remain inviolate.” That’s the sort of attitude I’d expect out of a death panel but not on a conservative forum. Possibly I’ve misinterpreted.
Your point is completely devoid of moral substance. May you personally reap the rewards of Obamacare.
I'm not very familiar with it, though it's my understanding that if one needs a quick Liver, it helps to know someone connected to the higher ups in the Chinese prison system, and be as wealthy as Steve Jobs.
If your family member was the one who was next and was bumped for this girl, how would you feel?
Why is her life worth saving and someone else’s, who’s also on the list, isn’t?
I don't think that's what people are saying (and it's certainly not what I'm saying). My point is simply that available transplant organs are very scarce, and unfortunately (but unaviodably) the fact that one person receives an organ necessarily means that someone else on the list does not receive that organ. In light of those circumstances, I think that it is better for these decisions to be made using a set of consistent set of rules/criteria than for some Washington bureaucrat (here, Sebelius) to start changing the rules for certain patients because those patients have managed to get widespread media attention.
I’m not sure why the federal government is involved in this decision, it should be up to her doctors and parents.
What difference does it make if she’s 10 and it lasts for 5 years and if someone is 12 and it lasts for 5 years?
So what’s moral then? Who can you, morally, bump down the list so this girl can get in line for a transplant that might not even work (she’s small enough that adult lungs aren’t really a good match)? Knowing that it might be months before another suitable donor appeared, if your younger, say 18-yo, brother was next in line, with 2 weeks to live, and they kicked him down the list for this girl, would you still think it was the right thing? Would you let her in if it was your middle-aged mother?
Should we always “make room” for whoever has the best sob-story? Transplants are a real difficult situation, because the case can be made on both sides. If the choice was this girl, or some criminal or some political figure (but I repeat myself), it would be one thing. But we’re talking here about other ordinary people, members of someone else’s family, who are also waiting for that donated organ. Can you really say this girl deserves it more than they? On what grounds? That’s why in situations like this, it’s better to stick strictly to the medical suitability, because no one is really qualified to say morally who “deserves” to get the transplant more.
And what’s worse, this isn’t a surgeon we’re talking about making this decision. It’s a bureaucrat. As I noted in my original comment, the *last* thing anyone should want is for some paper-pusher to make arbitrary decisions on life-or-death procedures, based on either emotional appeals or abstract numbers like productivity (or campaign donations or political affiliation or any other non-medical criteria).
Let’s put Sebelius on the list for a heart transplant. She needs one badly. Not looking good for the OCare death panels, is it?
>> Can you really say this girl deserves it more than they? On what grounds?
That was enough to reiterate your deeply lifeless point.
Clinical mediocrity is the driving precept of socialized medicine. You describe it well.
As an alternative to the austere conjecture, how about providing some hard data that complements the potential of a free healthcare market.
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