Sebelius meets Major Major’s Catch-22 – UPDATED

What could you possibly say to him? Major Major wondered forlornly. One thing he could not say was that there was nothing he could do. To say there was nothing he could do would suggest he would do something if he could and imply the existence of an error or injustice in Colonel Korn’s policy. Colonel Korn had been most explicit about that. He must never say there was nothing he could do.

“I’m sorry,” he said. “But there’s nothing I can do.”
Catch-22, Chapter 9

Because most of the time, when they have a choice, the GOP chooses to do the politically stupid thing, I am anticipating them trying to make hay out of this story focusing on HHS Secretary Kathleen Sebelius and girl with only weeks to live:

Health and Human Services Secretary Kathleen Sebelius rebuffed an appeal from Rep. Lou Barletta 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,” Barletta, a Pennsylvania Republican, 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 currently 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 that other organs — that it’s based on the survivability [chances].”

That I am no fan of Secretary Sebelius is no secret; In a cranky mood, I believe I once referred to her as “Madame Touched-With-Frost”, and I have long argued that if HHS and the government absolutely insisted that contraception, sterilization procedures and abortifacients should be provided “free” to the citizenry, they could have written it into Obamacare or created an addendum to any one of our burgeoning health regulations making it so. Instead, she and the administration went out of their way to confront and challenge the religious consciences of churches and individual business owners, head-on, happy to force those consciences to be compromised.

I said in a previous post that this administration seems to have negative instincts where the first amendment is concerned, and in the case of the HHS mandate, it has demonstrated a striking disregard for the most basic of all rights: the right to believe, and to think, for oneself.

So yeah, Ms. Sebelius and me, we’re not buds.

Having said all that, though, I must defend her from what — to my way of thinking — is an attempt by some to paint Sebelius as an unfeeling monster, particularly as they take her words “someone lives and someone dies” out of context, which gives them a particularly chilling flavor of inhumane detachment.

For all I know, Sebelius actually is an unfeeling monster, but I’m going to take her in good faith, here, and suggest two things I never believed I’d say about her:

1) Sebelius is right. Lungs are different from other transplant organs; they are incredibly delicate and while larger lungs can be resized for smaller people, that’s the lesser of two options. I am reminded that opera singer Charity Tillemann-Dick, who has undergone two lung transplants, related her difficulties in feeling like she could really fill a pair of lungs too large for her. To parents intent on saving their child’s life, any option — even an non-optimal one — is worth attempting, but this one has unusual difficulties.

2) Sebelius is in an impossible situation, and anyone who ponders this issue quickly realizes it. I have nothing but sympathy in my heart for the parents of Sarah Murnaghan. We parents will do anything, hope for anything, to save the lives of our kids; I’m sure if Sarah’s mom or dad could be allowed to donate their own lungs, and the match was possible, they’d do it. No parent can watch their child’s life ebb away and not grasp at any lapel they can, begging, “please, do something! Save my child. Pull a string! Break a rule!”

It is an utterly understandable reaction from the parents and a request no one should ever say they have no right to make, because to bury one’s child is to be buried with them.

This is a terrible situation.

And because it is a terrible situation, I expect the GOP to overdo in the attempt to exploit the bad optics inherent to it. They are bad optics, and Ace is correct in that this story showcases why we do ourselves no favors by putting medical decisions into the hands of bureaucrats where — human vagaries of feeling and privilege being what they are — political considerations will eventually come to bear on issues of life and death.

This is a serious and awful issue, and Sarah Murnaghan’s story will likely (hopefully) prompt some serious discussion about “the existence of an error or injustice in Colonel Korn’s our government’s policy.” But this is a child’s life, and her parent’s desperate hope we’re talking about, and this is really not the issue over which to try to fry Kathleen Sebelius (there’s always that one).

Exploiting a child’s illness and possible death in order to score political points will only backfire as people ponder Sebelius’ predicament, imagine their own response to it, and realize that the answers are not easy. Most people will think, “I would not want to have to make this decision.” The best thing to bring out of it, politically, is the question of just how much government involvement we want in health care decisions and whether it is fair to suggest some re-thinking. Beyond that…

Let us pray for the Murnaghan family, because miracles do happen. Lord, the one you love is sick…you are the Divine Physician and Source of all healing and all wisdom. We ask for your merciful attendance upon your daughter, Sarah, and her family — that your wisdom be visited upon medical professionals and the enforcers of these earthly laws, in a way that might yet spare her life, and that in all circumstances and events, your holy will be done. We ask with simplicity of heart, and with no recourse except to you, in the name of Jesus Christ.

UPDATE:
A court has ordered Sebelius to make an exception and allow this transplant.

A federal judge has ordered HHS Secretary Kathleen Sebelius to allow Sarah Murnaghan, a 10-year-old in Pennsylvania dying of cystic fibrosis, to be moved to the adult lung transplant list. Normally federal policy prevents children younger than 12 from receiving donated adult lungs, but Sebelius has been under pressure to change the policy.
The parents of the girl asked the judge on Wednesday to order Sebelius to alter organ donation rules so that the dying child has a better chance of receiving new lungs. They say she is running out of time. U.S. District Judge Michael Baylson granted a temporary restraining order to exempt Murnaghan from the current policy, and there will be a hearing on June 14.

An answered prayer? Things are being cut very close. Let us keep praying and stay tuned.