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June 15, 2013

Welcome to 'So You Think You Deserve A Transplant!' [krakatoa]

“The parents really went the extra mile.”

Look, I just want to say up front:

I completely understand Janet and Francis Murnaghan's campaign to get their daughter, Sarah, a lung transplant at any cost.

They are parents. Their primary function is the continued existence of their daughter, and I doubt many parents in their situation and with their means would do less.

But, I can't help but think we have just turned the transplant business into a popularity contest.

The rules that existed prior to the Murnaghan's media blitz and lawsuit worked, more often than not, to make the process as objective as possible.

Yes, there are several good examples of people who, through fame or fortune, managed to get to the front of their line. But by and large, the rules worked as they should have, and the lesson from those breaks in the rules should have been: Fix the system to make it even more objective.

Instead, despite the promises that this little girl was merely being given a chance at the adult wait list, it turns out that indeed, she was not only placed with high priority on the adult list, but was also on the pediatric wait list. She was double-dipping, as it were, and ultimately, she got the next available lungs.

Despite the "false choice" accusations aimed at those people on the dispassionate side of the debate who claimed giving this girl a pass on the rules meant giving someone else a death sentence, indeed, it appears quite likely that someone must die who otherwise would have had a chance at life, perhaps a chance better than that of a juvenile with cystic fibrosis and a pair of sliced-to-fit lungs.

As of Wednesday, 217 people were waiting for lungs... in Sarah’s geographical area, Region 2, according to data from the Organ Procurement and Transplantation Network, or OPTN... Nationwide, nearly 1,700 people are waiting for lungs...

The Murnaghan's thanked the organ donor's family:

"We are elated this day has come, but we also know our good news is another family's tragedy," they wrote. "That family made the decision to give Sarah the gift of life -- and they are the true heroes today."

That quote sounds like, perhaps, the donor family designated Sarah to be the donee. If so, someone else is going to die because they or their family didn't "go the extra mile" and turn what has been a somber and serious process into a popularity contest vying for the affections of the next judge and donor.

I wonder if the Murnaghans will have anything to say to the family of the next wait-list fatality.

I wonder, if at any point, they will regret the inevitable tragedies to come from having turned the organ-donor process into a gameshow.

A second mother, Milagros Martinez, also filed suit last week on behalf of her 11-year-old son, Javiar Acosta, who also has severe cystic fibrosis and is waiting for a lung transplant...

[Both families] argued that a 2005 system that revamped the way lungs were allocated for adults and teens may have cut waiting list deaths in that group, but actually penalized children who were younger than 12 but large enough to get adult or teenage-sized lungs.

Well, Sarah's family was apparently wrong about their child being large enough for "adult" sized lungs. Oops.

Which leaves their argument, essentially, that even though the 2005 rules do cut wait-list fatalities, because their children aren't given priority over everyone else's family members, it is a broken system.

I said at the beginning of this "I doubt many parents in their situation and with their means would do less."

Their success here, however transitory, is a shot across the bow of everyone on a wait-list.

Lawyer up. Media up. Pretty yourself up to the judges for your organ. If you don't, you can bet someone else will be doing just that, and your place on the wait-list won't be worth the paper your death certificate is eventually written on.

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posted by Open Blogger at 11:16 AM

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