June 15, 2013

Now That She Has The Lungs

Like many Americans, I paid a certain amount of attention tot he fight over whether or not ten-year-old Sarah Murnaghan got a lung transplant. While the case points out a lot of flaws with the current system for getting and distributing organs for transplantation, this particular case was troubling to me because the child was jumped to the front of a line to receive organs she was otherwise ineligible for under the guidelines in place.

Jazz Shaw over at Hot Air notes that Doug Mataconis has given voice to a very legitimate criticism of the decision in this case -- that the intervention of courts into these transplantation decisions makes the system much more difficult.

I am certainly not faulting Sarahís parents for the course of action that they took. Their daughter likely would have died in the very near future if she hadnít gotten a transplant, and seeking to have the under-12 rule repealed via the Court system was the only real option that they had available to them. Any parent in a similar situation would have done the same thing, and itís understandable to see why. However, Courts can only deal with cases like this on an individual basis. They generally wonít consider the consequences in the future of upsetting the medical ethics apple cart by ordering that one patient be advanced up the list to those who are already on the list or the ones who donít get as a high a position on the list as they might have otherwise. The result may be good for one person, but itís going to work to the disadvantage of others, and itís likely to make it that much harder to run an organ transplant system that presents painfully difficult ethical issues on a daily basis.

The reality of this case was that a child who was sick got an adult organ in a procedure that is less likely to be successful in the long term than would have been the transplantation of those same lungs into an adult. And while all the sympathetic press coverage of the dying child and her anguished family was touching, nobody asked what I view as a very important question -- one that I believe nobody (at least not Sarah's family, their supporters, and the ratings-driven media folks who covered the story) wanted to ask because it would have exposed an ugly side of the effort to thrust the child to the front of the line:

Whose father or mother, sister or brother, daughter or son died so that this little girl could get the lungs that she was not entitled to under the guidelines?

Let's face it -- this was not a case where the outcome could be "win-win"; it is a classic case of "win-lose" no matter what the outcome. So will some courageous journalist, one willing to ask the hard questions and pursue the answers wherever they lead, be willing to take up this one and get an answer? After all, if we are going to consider whether the policy was right or the judge's decision was right, we ought to be looking not just at the adorable child who lived, but also at the almost certainly existent bereaved spouse and orphaned children of the person who did not get that transplant. There is more than one side to this story, and the American people should see that other side as well.

And just as importantly, with the coming of ObamaCare in a matter of months, we will see more situations in which government regulations and bureaucrats will decide who gets what treatment and who lives and dies. That is inevitable once you put the government in charge of health care to the degree that the new law does. How often will we find patients and their families appealing to the media, to their elected officials, and to the courts to gain preferential treatment in the face of regulations that place them at a disadvantage?

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the problem could be solved with the free market.

|| Posted by rumcrookô, June 17, 2013 01:08 AM ||

Perhaps you are right - but the reality is that we do not currently have such a free market and are unlikely to any time soon due to the government getting more closely entangled with medical care. I therefore raised the issues that exist given the current trend, not the sort of radical reversal you suggest.

|| Posted by Rhymes With Right, June 17, 2013 11:12 AM ||

The judge removed the "adult" requirement because it is no longer relevant with today's medical reality. He did not put her on the "adult list," but said there had to be a review based upon all the parameters including the reality that 10-11 year olds can have successful adult transplants. In fact there is now a review panel set up to see if all those children once listed as ineligible can now, under the new medical reality, be listed as adolescents and become eligible for transplant.

Once that requirement was lifted she met ALL the parameters for lungs. Once she was then OKed for adult lungs, she became the SICKEST person in the country needing a lung transplant. She did not jump a line. She did not pay off the doctors. The parents only asked for the modern medical reality to be applied to their daughter. They had every right to do that. That there was a more "appropriate"person who didn't receive those lungs.I have news for you there are always others who do not receive transplants. That unfortunately is the result of a lack of transplant organs in our country. But you do not have the right to deny this child a transplant based upon an outdated and medically unsound rule. Or do you decide the child's life was not worth saving because she had CF (i.e., a disability) and not worthy of a life? By the way what do you deem a more "appropriate" person worthy of a transplant?

HHS said it would take over two years to review the ten year old rule. So the parents were supposed to just sit back an allow their child to die waiting for the federal government to decide to change the rule when they knew the rule was outdated and would mean their daughter would die?

For someone so against Obamacare I would think you would be happy that parents took the initiative and sued to change the rule. That they took the initiative against the federal government. You can't have it both ways. Either people have a right to fight the federal government for their healthcare or they don't.Obamacare would mean more rules and regulations like these outdated transplant rules that cause people to die. Is the population supposed to wait on the turtle-like reality of the government cog in order to see if they have a right to fight for their lives and the lives of those they love?

It is interesting that somehow you and others like you think that only certain people under certain circumstances are entitled to fight for life. Please specify when and who that would be.

|| Posted by Elise Ronan, June 19, 2013 05:49 PM ||

In other words, the judge created a new rule out of whole cloth, exceeding his authority under the law and the Constitution.

The reality is that this child is less likely to benefit as much as an adult would from these lungs and is less likely to survive as long as an adult. What's more, the judge-made law that we have now has the effect of taking lungs from adults for children while also leaving the children eligible for lungs from children that are not suitable for adult transplantation due to size.

Personally, I believe in a more free market system, starting with lifting the ban on payment for organs. That will increase the supply. And since you want to accuse me of supporting ObamaCare type regulations, let me point out that YOU are the one who wants the government making the decisions on who gets what medical care. I'd prefer that the government butt out completely.

As for your asinine and insulting attack upon me personally, may I suggest that you go to hell -- and that our time together on the Watcher's Council will be quite intense if your plan on attacking on a personal level anyone you disagree with.

|| Posted by Rhymes With Right, June 19, 2013 05:56 PM ||

That's really adult Greg telling me to go to hell, calling me asinine and the like. I also did not attack you on a personal level I asked you a question that you quite frankly did not answer. As a parent of two youngmen with autism spectrum disorders you picked the wrong one to fight with- apparently you have never heard of autism-warrior-parents. You are about to get an education.

By the way, ignore my email and my apology. And as far as being on the Watcher's Council that did not take away my right to an opinion nor the right to defend my sons.

You want to fight over whether children with disabilities have a right to life bring it on.

|| Posted by Elise Ronan, June 20, 2013 06:15 AM ||

Yeah, like this isn't an attack, and a personal one at that -- "It is interesting that somehow you and others like you think that only certain people under certain circumstances are entitled to fight for life."

Especially given the fact that I have lost two family members to transplant issues, including one less than a month ago.

By the way -- "go to hell" was the polite revision of what I originally typed. Your no-class second comment makes me wonder if I was wrong to have made that revision, especially given that you reiterate the personal attack upon me and ramped it up.

|| Posted by Rhymes With Right, June 20, 2013 09:28 AM ||

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