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Sarah Murnaghan lung transplant case: Sebelius ordered to make exception on transplant
Sarah Murnaghan lung transplant case: Sebelius ordered to make exception on transplant - Brett Norman - POLITICO.com
By BRETT NORMAN | 6/5/13 5:57 PM EDT
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.
Sebelius has come under intense pressure in this case, which is receiving media and online attention. Some medical ethicists, however, say that while the organ allocation policy may well need to be reviewed and changed, they worry about making case-by-case decisions based in part on emotional media attention.
Some GOP congressmen have also joined the fray, quite literally “begging” Sebelius to intervene and save the girl’s life. Both Pennsylvania senators — a Democrat and a Republican — have also written on the child’s behalf.
“I’m begging you,” Rep. Lou Barletta (R-Pa.) told Sebelius at a House hearing this week, asking her to suspend the transplant rules until they can be revisited. “Sarah has three to five weeks to live. Time is running out.” The child has cystic fibrosis.
At the hearing, Sebelius called the situation “agonizing” and said she had talked to the girl’s mother. She has ordered a review of the policy, which she acknowledged would take too long to have any impact on this girl’s situation but said it wasn’t her place to pick and choose transplant recipients.
“I can’t imagine anything worse than one individual getting to pick who lives and who dies,” she said. Sebelius said putting Sarah next in line would disadvantage other young people who have also been waiting for transplants — including three in the same area. Helping one child could possibly hurt another.
Some experts agree that the lung allocation policy may need to be revisited; the policy for kidney and liver transplants has been. But they say no snap decisions should be made because of the media glare.
“Should Sebelius step in and do something? No. She doesn’t have all the facts,” said New York University bioethicist Arthur Caplan. Acting under pressure from a media savvy family “or the noisiest person in line” is bad policy, he added.
Transplant policy in the U.S. is made and administered by the Organ Procurement and Transplantation Network working with the United Network for Organ Sharing under contract with HHS. The issue is inherently charged and complex because there aren’t enough organs for everyone who needs them, and people do die waiting.
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 “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.”
Setting transplant policy is complicated. OPTN has expert committees that draft proposals and submit them for public comment. Approved policies are subject to the secretary’s discretion of enforcement or reconsideration, according to a summary of the regulations by OPTN.
The policy that the Murnaghans and their advocates are questioning is one that puts children younger than 12 at the bottom of the waiting list for lungs from adult donors. Young children would be first in line for lungs donated by kids of similar age. But far fewer of those are available.
In recent years, younger kids have been given greater priority for kidney and liver transplants, Caplan said, and that is in keeping with the desire of donors that their organs provide as much life as they can. A transplant into an older patient might not provide the same number of “life years,” he said, an important consideration. But whether that’s also in order for lung transplants depends on the actual science of transplanting adult lungs into children, not just the instinct to save a child.
Doctors can use an adult lung for a child, but they normally use only a piece of the organ. Another option that has been tried in some occasions: transplanting from a living donor, like a parent, Caplan said.
The Murnaghan family has issued a statement in response to Sebelius’s comments at the hearing, saying that they weren’t asking for special treatment for their daughter alone, just that the odds be evened for adults and children waiting for lungs, regardless of the donor’s age.
“All we want is fair treatment for all of these children, including Sarah,” the statement said. “We have yet to hear an explanation why the secretary will not do this.”
Caplan noted one reason that may give Sebelius pause: By moving someone up the list, someone else goes down. One child saved could mean another child dies. Sebelius, he noted, “doesn’t have all the information.”
Jason Millman and Kathryn Smith contributed to this report.
Sarah Murnaghan lung transplant case: Sebelius ordered to make exception on transplant - Brett Norman - POLITICO.com
By BRETT NORMAN | 6/5/13 5:57 PM EDT
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.
Sebelius has come under intense pressure in this case, which is receiving media and online attention. Some medical ethicists, however, say that while the organ allocation policy may well need to be reviewed and changed, they worry about making case-by-case decisions based in part on emotional media attention.
Some GOP congressmen have also joined the fray, quite literally “begging” Sebelius to intervene and save the girl’s life. Both Pennsylvania senators — a Democrat and a Republican — have also written on the child’s behalf.
“I’m begging you,” Rep. Lou Barletta (R-Pa.) told Sebelius at a House hearing this week, asking her to suspend the transplant rules until they can be revisited. “Sarah has three to five weeks to live. Time is running out.” The child has cystic fibrosis.
At the hearing, Sebelius called the situation “agonizing” and said she had talked to the girl’s mother. She has ordered a review of the policy, which she acknowledged would take too long to have any impact on this girl’s situation but said it wasn’t her place to pick and choose transplant recipients.
“I can’t imagine anything worse than one individual getting to pick who lives and who dies,” she said. Sebelius said putting Sarah next in line would disadvantage other young people who have also been waiting for transplants — including three in the same area. Helping one child could possibly hurt another.
Some experts agree that the lung allocation policy may need to be revisited; the policy for kidney and liver transplants has been. But they say no snap decisions should be made because of the media glare.
“Should Sebelius step in and do something? No. She doesn’t have all the facts,” said New York University bioethicist Arthur Caplan. Acting under pressure from a media savvy family “or the noisiest person in line” is bad policy, he added.
Transplant policy in the U.S. is made and administered by the Organ Procurement and Transplantation Network working with the United Network for Organ Sharing under contract with HHS. The issue is inherently charged and complex because there aren’t enough organs for everyone who needs them, and people do die waiting.
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 “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.”
Setting transplant policy is complicated. OPTN has expert committees that draft proposals and submit them for public comment. Approved policies are subject to the secretary’s discretion of enforcement or reconsideration, according to a summary of the regulations by OPTN.
The policy that the Murnaghans and their advocates are questioning is one that puts children younger than 12 at the bottom of the waiting list for lungs from adult donors. Young children would be first in line for lungs donated by kids of similar age. But far fewer of those are available.
In recent years, younger kids have been given greater priority for kidney and liver transplants, Caplan said, and that is in keeping with the desire of donors that their organs provide as much life as they can. A transplant into an older patient might not provide the same number of “life years,” he said, an important consideration. But whether that’s also in order for lung transplants depends on the actual science of transplanting adult lungs into children, not just the instinct to save a child.
Doctors can use an adult lung for a child, but they normally use only a piece of the organ. Another option that has been tried in some occasions: transplanting from a living donor, like a parent, Caplan said.
The Murnaghan family has issued a statement in response to Sebelius’s comments at the hearing, saying that they weren’t asking for special treatment for their daughter alone, just that the odds be evened for adults and children waiting for lungs, regardless of the donor’s age.
“All we want is fair treatment for all of these children, including Sarah,” the statement said. “We have yet to hear an explanation why the secretary will not do this.”
Caplan noted one reason that may give Sebelius pause: By moving someone up the list, someone else goes down. One child saved could mean another child dies. Sebelius, he noted, “doesn’t have all the information.”
Jason Millman and Kathryn Smith contributed to this report.
