28 4 mins 9 yrs

thThere is a little girl that lives not to far from where I grew up, she’s dying. She has cystic fibrosis. 10-year-old Sarah Murnaghan needs a Lung Transplant.

Federal Regulations state that a child under 12 can’t receive an adult transplant. Which the majority of donors are.  It is more complicated than just a political decision. The reason for the rule is viability and survival rates. There are  1,600 people on the adult waiting list. and 20 children that are also waiting.

This story tugs on my heart in several directions. Her doctors say she would live with an adult transplant, but the Federal board of Doctors say odds are she won’t.

The story is playing like a bad made for TV Movie. Everyone is weighing in pleading for an exception, an exception that isn’t coming. It was a local story and has gone National. So of course the Politicians are weighing in. All of that is to be expected, but this exchange disturbed me.

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].”

Barletta countered that medical professionals think Murneghan could survive an adult lung transplant. During the exchange, he also said that the girl has three to five weeks to live.

Sebelius reminded Barletta that 40 people in Pennsylvania are on the “highest acuity list” for lung transplants.

Now what Sebelius said is true, but there are some things that you just don’t say. In Public, For the Record, and on Film. If you have made the decision that you are not going to intervene, Fine. You don’t then say it publicly.

Also when your a controversial figure that half the country doesn’t trust and says your going to create DEATH PANELS, do you think it wise to have this conversation in public?

I don’t know, what say ye?

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28 thoughts on “A tragedy in every direction

  1. While obviously this is a very sad case I am at a lost to find anywhere in the piece something that Sebelius said that shouldn’t be said in public?

  2. Hang on …

    So she needs a transplant to live, her doctors say she’s good to go for it, but a federal diktat is in the way and political commissar says the girl must be denied.

    This is a supposedly free market health system?!

    There’s no option: her parents and doctors must disregard the regs and state appratchiks. They must simply do what is right. If necessary, her parents must search abroad. The law and bureacracy is irrelevent. The adults must simply do what is right and proper.

    When it’s all over and the girl is on the mend, her parents should then homeschool her and keep her as far from the state as possible.

  3. And where are they going to find that donor? And who is going to raise their little girl when they and their doctors are in prison?

  4. Seamus your cold, you really don’t see anything wrong with someone lives, someone dies as a response when talking about the death of a child?

    You don’t have kids do you?

  5. It is a frank response needed to lift it above the hysterics. The fact is that giving these lungs to this wee girl will give her a chance at survival but will kill someone else. Given that the best course of action is to give them to the person with the best chance of survival. It was a point that needed to be made.

  6. There are 40 adults in PA highest acuity list.

    Adults survive transplants of adult lungs better than kids. There are more patients in need of lung transplants than there are lungs available.

    What lungs are available should be given to those who would benefit best. Which unfortunately will not cover all those in need.

  7. Seamus –

    Relatives look after her. Even if the parents are in jail, their girl would be alive.

  8. You still haven’t explained where they are going to find a donor who is a match, and a surgical team to remove those organs for them.

  9. their girl would be alive.

    Might be alive.

    And the person whose place in the queue she took would be dead.

  10. Seamus –

    Well I haven’t looked, but I’d suggest the usual routes. Failing that, the parents should search outside the jurisdiction of the feds.

    Let the record show that a free market in health care wouldn’t put up commissars to block urgent transplants, and that a surgical team would want to perform the operation, free from the threat of state violence.

  11. The usual routes would block them off. UNOS (a federal body which controls organ donation, movement and transplants) wouldn’t release the organs to them. They could go out of the US but I’m pretty sure that at this moment the wee girl is too unwell to transport her while there are laws about bringing human remains across international borders.

    Also a free market in healthcare would give lungs to the highest bidder so this wee girl mightn’t get them in that system either.

  12. SEAMUS the point is as I stated in the post inevitable, but you don’t say that. Not in public.

    Not where family and friends will read and see it.

    So to make your point of the inevitability you would walk right up to her parents and say “she waits her turn, now bugger off” ?

    Could you really do that? If you can, than you’re dead inside.

  13. commissars to block urgent transplants

    Bullshit.

    What is blocking urgent transplants is the lack of available lungs.

  14. That isn’t what was said Troll. The story being spun by the parents (for obvious reasons) and the story being spun probably for political purposes by Republicans and Fox News, is that Sebelius with a stroke of a pen can save this wee girls life with no consequences for anyone else. In the face of that she needed to be blunt. To give this family those lungs will kill someone else. In the face of the story being spun that needs to said and emphasised to underline the reasons why she just doesn’t give the girl the lungs.

  15. but I didn’t spin it in this post.

    My heart goes out to the family, because your reasoning is correct. It is the timing and the availability that dictate whether or not the child gets the lungs.

    However and this is what rubbed me the wrong way. YOU DON’T SAY THAT IN PUBLIC!

    You obfuscate, hell you down right lie. You don’t give your enemies a statement like that to use against you, and you above all else DON’T CRUSH THE HOPES OF THE PARENTS OF A DYING CHILD!

    Have you no heart?

  16. You didn’t spin it in your post. But have you read Fox where their headline is “Secretary Sebelius, stop hiding behind bureaucratic rules and save a child’s life” you start to notice the spin. And in the face of that spin she needed to be clear that this is not a case of saving a child. This is a case of giving a child a chance by killing someone else.

    If you want to blame anyone for it blame those who spun it in such a way that she needed to be blunt about it.

  17. Have all here volunteered to be an ” organ donor ” in the event?

    I have. It’s noted right on the Drivers License.

    Stop typing and sign up now.

    More doing, less talking.

  18. This is a very sad difficult and delicate situation for anyone to try and turn into an ideological and political battle. I am sure everyone involved in this or with responsibilities therein would wish to do whatever is best in the medical sense for all concerned and especially for this little girl.

  19. I’m a donor.

    Seamus this group lies about everything UNDER OATH even, what they pick now to be honest because of a story on Fox… sorry ain’t buying it.

  20. Colm

    If anything I went out of way to NOT view this from a political view. Just one of common decency.

  21. I would hate to make decisions like this, or to set policy for same.

    The concept of a priority list makes complete sense to me.

    It’s easy to criticize, but hard to come up with details of a plan. Because someone will always think that they or their family should ” cut to the head of the line “. As the rich will often find a way to do. Steve Jobs flew from California to Tennessee for a liver transplant when there was no line in Memphis.

  22. Phantom they’re changing the law here it will soon be a matter of signing out of organ donation other wise they can be used.

  23. that can be a bit much. So if you don’t opt out they’ll just harvest your parts. Don’t fall into a Coma…

    It should be voluntary. Over here when you renew your drivers license you can volunteer or if your brain dead (no jokes please) your family when they pull the plug can consent or you have to have spelled it out ahead of time in writing.

    Not a decision I think the state should make for you.

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