Maybe Sarah Murnaghan Shouldnât Get a Lung Transplant
The Philly Post | Sandy Hingston
I donât have a critically ill child, and I donât usually read articles about people who do. Itâs not that Iâm heartless. Itâs just that nothing points up the unbearable unfairness of life like a sick child. Iâm sure that Sarah Murnaghan, the 10-year-old with cystic fibrosis whoâs 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 Sarahâs 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: âChanging policy takes time,â she wrote in a letter to U.S. Secretary of Health Kathleen Sebelius published in the paper. âBut making a lone exception, in an extraordinary and rare case such as Sarahâs, can be done in days. Heck, for all I know it can be done in a single phone call.
Sarahâs advocates did such a good job that last week, a federal judge, in what Politico called âa quick and unusual ruling,â ordered Sebelius to make that exception and move Sarah onto the list for adult, rather than pediatric, lungs.
Iâm happy for Sarah and her family.
But Iâm 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. Iâm also concerned about setting a precedent that, in the words of Art Caplan, now a bioethicist at NYU and formerly at Penn, leads to âother people saying, âYou know, I need a liver. I need a heart. Whereâs a federal judge?ââ Already another CHOP patient, 11-year-old Javier Acosta, has also gotten a judgeâs reprieve and been moved to the adult transplant list. The chairman of the transplant networkâs executive committee, physician John Roberts, says heâs 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: âHe doesnât 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. Heâs making a decision for the child thatâs in front of him.â But somebody has to make that decision, somewhere down the line. As Caplan told NPR, âAre 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?â 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?
Continue reading
BTW, are
Sarah's parents and her family registered organ donors?
______________________________________________________
"You have the power to SAVE lives."
To register as a donor in California:
www.donateLIFEcalifornia.org | www.doneVIDAcalifornia.org
Outside California:
www.organdonor.gov | www.donatelife.
I donât have a critically ill child, and I donât usually read articles about people who do. Itâs not that Iâm heartless. Itâs just that nothing points up the unbearable unfairness of life like a sick child. Iâm sure that Sarah Murnaghan, the 10-year-old with cystic fibrosis whoâs 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 Sarahâs 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: âChanging policy takes time,â she wrote in a letter to U.S. Secretary of Health Kathleen Sebelius published in the paper. âBut making a lone exception, in an extraordinary and rare case such as Sarahâs, can be done in days. Heck, for all I know it can be done in a single phone call.
Sarahâs advocates did such a good job that last week, a federal judge, in what Politico called âa quick and unusual ruling,â ordered Sebelius to make that exception and move Sarah onto the list for adult, rather than pediatric, lungs.
Iâm happy for Sarah and her family.
But Iâm 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. Iâm also concerned about setting a precedent that, in the words of Art Caplan, now a bioethicist at NYU and formerly at Penn, leads to âother people saying, âYou know, I need a liver. I need a heart. Whereâs a federal judge?ââ Already another CHOP patient, 11-year-old Javier Acosta, has also gotten a judgeâs reprieve and been moved to the adult transplant list. The chairman of the transplant networkâs executive committee, physician John Roberts, says heâs 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: âHe doesnât 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. Heâs making a decision for the child thatâs in front of him.â But somebody has to make that decision, somewhere down the line. As Caplan told NPR, âAre 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?â 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?
Continue reading
BTW, are
Sarah's parents and her family registered organ donors?
______________________________________________________
"You have the power to SAVE lives."
To register as a donor in California:
www.donateLIFEcalifornia.org | www.doneVIDAcalifornia.org
Outside California:
www.organdonor.gov | www.donatelife.
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