Our hearts go out to a 12 year old girl and her family in PA as she waits for a healthy lung, in dire need of a transplant. She is on the UNOS system, a system set up to make sure that organs are distributed for transplant in a fair, equitable, blind and transparent manner entirely based on medical need and organ compatibility. Once on that system there is little one can do but wait and, if one is so inclined, pray. That will not stop desperate people from trying to goad the system to work better for them and that is understandable when someone you love is on the edge.
But the system works and has to be respected.
So when a court steps in to try to upend the system, besides being questionable interference in medical care, it’s a violation of a system that was set up to obviate such interference!
A federal judge has temporarily allowed a dying 10-year-old girl to move up the adult waiting list for a lung transplant, though an expert has questioned the decision on medical and ethical grounds.
“We are beyond thrilled,” Janet Murnaghan, the girl’s mother, told The Associated Press on Wednesday after U.S. District Judge Michael Baylson intervened in the case. “Obviously we still need a match.”
Baylson suspended an age factor in the nation’s transplant rules for 10 days for Sarah Murnaghan, who has been at Children’s Hospital of Philadelphia for three months with end-stage cystic fibrosis.
A court getting involved is an untenable violation of the system, no matter how well intentioned.
Lung transplants are the most difficult of organ transplants, and children fare worse than adults, which is one reason for the existing policy, said Dr. Arthur Caplan, a bioethicist at New York University Langone Medical Center.
He called it troubling, and perhaps precedent-setting, for a judge to overrule that medical judgment, and predicted a run to the courthouse by patients who don’t like their place on the waiting list.
“I’m not sure I want judges or congressmen or bureaucrats trying to decide what to do with organs at the bedside,” Caplan said.
What is truly disgusting would be if political operatives got involved to push their petty agenda, such as oh, right wing nut jobs using this little girl’s situation to attack HHS Secretary Sebelius for not just making a phone call and getting the girl a lung! (She’s a cabinet secretary, surely she must have a spare girl lung at her disposal)
This ridiculous Politico story implies that Sebelius is the person standing in the way of the girl getting a lung. While this one 2 days ago quotes Republican spokesmen unfairly saying that Secretary Sebelius has the power to change the system.
While Sebelius can certainly order a policy review, as she did in a May 31 letter to the procurement network, her authority to intervene in a specific case is unclear.
Rep. Tom Price (R-Ga.) told Sebelius that “[i]t simply takes your signature” to help this child.
Caplan said: “It isn’t clear no matter how many congressmen yell at Secretary Sebelius that she has the ability to do anything.”
This piece on the Fox News site is disgusting in its simplistic retelling of the story as a moral failure to save a little girl, and even worse a typical right wing victimization persecution story rather than the agonizing medical dilemma it is.
I agree with many who have said that this child is a victim of age discrimination. But I also agree that Sarah has been ignored by our federal health leaders and has been placed in a bureaucratic Neverland.
Age discrimination? Are you fucking kidding me?
There are real issues involved in how the lists are created and those issues are medical issues that need to be dealt with unemotionally by the medical community. Because yeah, they can move pediatric patients onto the list and improve their odds, but that does push somebody else down the list with an equal and opposite reaction for those poor schlubs.