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Republican lawmakers line up to beg Obama appointee Kathleen Sabelius to change policy so this dying girl has a chance to live

Kathleen Sebelius at center of storm over child’s lung transplant
e plight of a dying 10-year-old girl in urgent need of a lung transplant has been taken up by some GOP lawmakers, and it’s shining a light on what critics say is a questionable policy that puts children further down the waiting list.

The family of the Pennsylvania girl, Sarah Murnaghan, has garnered the media spotlight, on cable news and in other outlets. And some GOP congressmen have joined the fray, quite literally “begging” HHS Secretary Kathleen Sebelius to intervene and save the girl’s life. Both Pennsylvania senators — a Democrat and a Republican — have also written on the child’s behalf.

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“I’m begging you,” Rep. Lou Barletta (R-Pa.) told Sebelius at a House hearing this week, asking her to suspend the transplant rules until they can be revisited. “Sarah has three to five weeks to live. Time is running out.” The child has cystic fibrosis.

(PHOTOS: How well do you know Kathleen Sebelius?)

At the hearing, Sebelius called the situation “agonizing” and said she had talked to the girl’s mother. She has ordered a review of the policy, which she acknowledged would take too long to have any impact on this girl’s situation, but said it wasn’t her place to pick and choose transplant recipients.

“I can’t imagine anything worse than one individual getting to pick who lives and who dies,” she said. Sebelius said putting Sarah next in line would disadvantage other young people who have also been waiting for transplants — including three in the same area. Helping one child could possibly hurt another.

Some experts agree that the lung allocation policy may need to be revisited; it has been for kidney and liver transplants. But they say no snap decisions should be made because of the media glare.

“Should Sebelius step in and do something? No. She doesn’t have all the facts,” said NYU bioethicist Art Caplan. Acting under pressure from a media savvy family “or the noisiest person in line” is bad policy, he added.

Transplant policy in the U.S. is made and administered by the Organ Procurement and Transplantation Network working with the United Network for Organ Sharing under contract with HHS. It’s inherently charged and complex because there aren’t enough organs for everyone who needs them, and people do die waiting.

(Also on POLITICO: Sebelius won't intervene on transplant)

While Sebelius can certainly order a policy review, as she did in a May 31 letter to the procurement network, her authority to intervene in a specific case is unclear.

Rep. Tom Price (R-Ga.) told Sebelius that “t simply takes your signature” to help this child.

Caplan said: “It isn’t clear no matter how many congressmen yell at Secretary Sebelius that she has the ability to do anything.”

Setting transplant policy is complicated. OPTN has expert committees that draft proposals and submit them for public comment. Approved policies are subject to the secretary’s discretion of enforcement or reconsideration, according to a summary of the regulations by OPTN.

The policy that the Murnaghan and their advocates are questioning is one that puts children under 12 at the bottom of the waiting list for lungs from adult donors. Young children would be first in line for lungs donated by kids their age. But far fewer of those are available.

In recent years, younger kids have been given greater priority for kidney and liver transplants, Caplan said, and that is in-keeping with the desire of donors that their organs provide as much life as they can. A transplant into an older patient might not provide the same number of “life years,” he said, an important consideration. But whether that’s in order for lungs as well depends on the actual science of transplanting adult lungs into children, not just the instinct to save a child.

Doctors can use an adult lung for a child, but they normally only use a piece of the organ. Another option that has been tried in some occasions: transplanting from a living donor, like a parent, Caplan said.

The Murnaghan family has issued a statement in response to Sebelius’s comments at the hearing, saying that they weren’t asking for special treatment for their daughter alone, just that the odds be evened for adults and children waiting for lungs, regardless of the donor’s age.

“All we want is fair treatment for all of these children, including Sarah,” the statement said. “We have yet to hear an explanation why the secretary will not do this.”

Caplan noted one reason that may give Sebelius pause: by moving someone up the list, someone else goes down. One child saved could mean another child dies. Sebelius, he noted, “doesn’t have all the information.”

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Posted

If Sarah had a gun she could go out and get one on her own!

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Posted

whistling.gif

You really butt hurt about that NRA title thing aren't you. We get it all ready, just put it in your sig and be done with it.

crying_baby.jpg

Filed: Country: Monaco
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Posted

Republican lawmakers line up to beg Obama appointee Kathleen Sabelius to change policy so this dying girl has a chance to live

Kathleen Sebelius at center of storm over child’s lung transplant

This whole thing sucks for everyone involved. There is no win-win solution, unfortunately.

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Posted

Queue jumping is not allowed.

Is interesting Sabelius is being asked to participate in queue jumping.

Sometimes my language usage seems confusing - please feel free to 'read it twice', just in case !
Ya know, you can find the answer to your question with the advanced search tool, when using a PC? Ditch the handphone, come back later on a PC, and try again.

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Posted

Yell. Yell often, la.

Caplan said: “It isn’t clear no matter how many congressmen yell at Secretary Sebelius that she has the ability to do anything.”

Sometimes my language usage seems confusing - please feel free to 'read it twice', just in case !
Ya know, you can find the answer to your question with the advanced search tool, when using a PC? Ditch the handphone, come back later on a PC, and try again.

-=-=-=-=-=R E A D ! ! !=-=-=-=-=-

Whoa Nelly ! Want NVC Info? see http://www.visajourney.com/wiki/index.php/NVC_Process

Congratulations on your approval ! We All Applaud your accomplishment with Most Wonderful Kissies !

 

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Posted

This is such a sad story.

It is indeed. Now imagine for a second Sebelius would intervene. The organ that this little girl would receive would be an organ that another person would not receive. The Congressman of the district where that hypothetical person lived and died would then stand there accusing Sebelius of having sentenced that person to death by her ad-hoc interference with the organ donation regime. Absent that, the Secretary would find herself managing organ transplants going forward as surely thousands of people are in a similar boat as that little girl in need of a transplant. The sad truth is that there aren't enough organs available to save everyone that requires one. And the only way to change that in any way is for more people to register as an organ donor.

Posted

This thread has nothing to do with guns or George Zimmerman. Mods please delete it.

That was funny!!!

rofl.gifrofl.gifrofl.gif

Posted

I'm cool. Just highlighting the blatant double standards of the P&R moderation team.

Thank you. None of us that have been here more than a week , had any idea this has been an issue at VJ PR forum

But all joking aside you do put some pretty far out there titles on articles that have nothing to do with the NRA.

.

Filed: AOS (apr) Country: Canada
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Posted

You really butt hurt about that NRA title thing aren't you. We get it all ready, just put it in your sig and be done with it.

We were specifically told thread titles had to match the title of the article quoted. This has been said multiple times and seems to be selectively enforced. You don't see the injustice in that?

 

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