I don’t have a critically ill child, and I don’t usually read articles about people who do. It’s not that I’m heartless. It’s just that nothing points up the unbearable unfairness of life like a sick child. I’m sure that Sarah Murnaghan, the 10-year-old with cystic fibrosis who’s been in the news of late because the arcane rules of transplant lists made her ineligible for a transplant of more readily available (though still mighty scarce) grown-up lungs, is a great kid. Just about all kids are great kids. And it sucks, it really sucks, that kids get sick and sometimes die.
But Sarah’s family mounted a massive publicity campaign to rally the public and the media to push for an exception, in her case, to the rules set by medical experts on how donated organs are allotted. Daily News columnist Ronnie Polaneczky covered the case, and added her voice to a growing clamor: “Changing policy takes time,” she wrote in a letter to U.S. Secretary of Health Kathleen Sebelius published in the paper. “But making a lone exception, in an extraordinary and rare case such as Sarah’s, can be done in days. Heck, for all I know it can be done in a single phone call.
Sarah’s advocates did such a good job that last week, a federal judge, in what Politico called “a quick and unusual ruling,” ordered Sebelius to make that exception and move Sarah onto the list for adult, rather than pediatric, lungs.
I’m happy for Sarah and her family.
But I’m worried about a judge stepping into the territory of doctors and medical ethicists who have given a lot more thought to how to allocate rare, precious organs for transplant than he has. I’m also concerned about setting a precedent that, in the words of Art Caplan, now a bioethicist at NYU and formerly at Penn, leads to “other people saying, ‘You know, I need a liver. I need a heart. Where’s a federal judge?’” Already another CHOP patient, 11-year-old Javier Acosta, has also gotten a judge’s reprieve and been moved to the adult transplant list. The chairman of the transplant network’s executive committee, physician John Roberts, says he’s gotten 50,000 emails from people urging that he prioritize children in transplant decisions. Roberts says he understands why the federal judge ruled as he did: “He doesn’t want to make a decision that the [organ transplant network] has to make of: this child is in a situation with a lot of other children, and how that is going to affect the other children. He’s making a decision for the child that’s in front of him.” But somebody has to make that decision, somewhere down the line. As Caplan told NPR, “Are we going to give organs to people who yell the loudest? Are we going to give organs to people who can organize a publicity campaign?” Our medical system already favors the wealthy over the poor. Will we now provide organs to, say, a cute curly-haired blond little girl over a less winsome child? To the kid who makes the most poignant YouTube video? To the one with the hot mom?
My heart goes out to Sarah and her parents. They’ve already learned more than they should ever have had to about life’s inherent unfairness. And if that were my child, I’d use every weapon at my disposal to keep her alive. But that doesn’t mean I don’t have a bad taste in my mouth from the judge’s decision. Sometimes what seems to be least fair might actually be most fair when you take the long view. But who could take the long view when the life of her child is at stake?
I sure hope every one of Sarah’s many, many supporters have signed organ donor cards.