(CNSNews.com) – Health and Human Service Secretary
Kathleen Sebelius said Tuesday that she would not intervene in a
decision that bars a 10-year-old girl – given just weeks to live – from
getting a lung transplant.
During a House hearing on HHS’ FY 2014 budget request, Rep. Tom Price
(R-Ga.) urged Sebelius to intervene in the case of Sarah Murnaghan, who
suffers from cystic fibrosis and could die within weeks without a lung
transplant, but is considered too young for one according to rules
adopted in 2005 by transplant doctors.
“The reason she’s unable to receive that right now is because of an
arbitrary rule that says if you’re not 12 years old, you aren’t eligible
to receive an adolescent or an adult lung,” he said.
“Madame Secretary, under section 121.4 D, you have the opportunity.
It says, ‘Unless the Secretary directs otherwise based on possible risk
to the health of patients for public safety.’ Madame Secretary, I would
urge you this week to allow that lung transplant to move forward,” Price
said.
“Dr. Price, I appreciate your input. First as a mother and a
grandmother, I can’t imagine anything more agonizing than what the
Murnaghans are going through, and I talked to Janet Murnaghan, the
mother of Sarah about this case. What I have also done is look very
carefully at the history of the rules around lung transplant and organ
transplant,” Sebelius said but was cut off mid-sentence.
“With all due respect Madame Secretary, I’m going to reclaim my time.
It simply takes your signature … a study I know you have ordered, and I
appreciate that, but a study will take over a year. This young lady
will be dead,” Price said.
Rep. Lou Barletta (R-Pa.) also pressed the secretary on Murnaghan’s
case, asking “Why are we going to let a little 10-year-old girl die
because she is 10 and not 12? Sarah’s at the top of the pediatric list -
those who are 11 or younger. If Sarah were 12, she’d be at the top of
the adult list.
“Transplants should be based, I believe, on the severity of the
illness and not the person’s age, and I know you agree with that because
you’ve asked OPTN to please review the policy,” Barletta said.
“Sarah’s parents aren’t asking for special treatment for their
daughter … They’re asking for an equitable organ transplant system, and
you are the one person who has the authority to suspend the current
policy until we are confident that children have equal access to
lifesaving treatment and aren’t discriminated against because of their
age. We wouldn’t do it for any other reason,” he added.
“I’m begging you. Sarah has three to five weeks to live. Time is
running out. Please suspend the rules until we look at this policy,
which we all believe is flawed,” Barletta said.
“Well I would suggest sir that again this is an incredibly agonizing
situation where someone lives and someone dies,” Sebelius responded.
“Based on their age, based on their age!” Barletta shouted.
Sebelius explained that she was told by transplant experts that the
medical evidence and transplant doctors behind the rule made “a
delineation between pediatric and adult lungs – because lungs are
different than other organs – that it’s based on the survivability.”
“This is different. Sarah’s case is different. Doctors have said that
she could survive with an adult lung. It could be modified to save her
life. Why wouldn’t we do it? We do so much bullcrap around this place,
and we have the chance to save someone’s life, and because of some kind
of—there’s no logic to this,” Barletta said.
“Forty people in your home state are waiting on a—“ Sebelius said before Barletta cut her off.
“But she would be first if she were 12,” Barletta said.
“Sir, there are 40 people in the highest acuity list waiting for a lung in Pennsylvania,” Sebelius responded.
“But Sarah would be at the top of that list,” Barletta said before
his time expired and the committee had to move on to other members who
wanted to question the secretary.
http://cnsnews.com/news/article/sebelius-won-t-intervene-10-year-old-s-fight-lung-transplant
Judge grants dying Pennsylvania girl chance at lung transplant
A federal court judge has granted a temporary order that will allow
10-year-old Sarah Murnaghan, who is dying from cystic fibrosis and
desperately needs new lungs, to join an adult organ transplant list.
The judge has scheduled a preliminary injunction hearing for June 14, MyFoxPhilly reported.
Judge Michael Baylson made his ruling after hearing oral arguments
Wednesday afternoon on a federal lawsuit filed by Sarah's parents,
challenging the "Under 12 Rule" that was keeping the 10-year-old off the
adult transplant list.
Baylson's order tells Department of Health and Human Services (HHS)
Secretary Kathleen Sebelius to direct the group that manages the organ
transplant list to cease application of it in Sarah's case.
And if there is another child in the judicial district in Sarah's
situation, the judge would consider and probably grant a temporary
restraining order for them, too, if the case is presented in court.
Shortly following the judge's ruling, HHS said in a statement it "declines to comment on [the] ongoing legal matter."
In a statement issued late Wednesday afternoon, the family said, "We
are experiencing many emotions: relief, happiness, gratitude and, for
the first time in months: hope.
"
It adds, "We cannot say enough about the global outreach and support
we've received on behalf of Sarah -- people of all ages and walks of
life have reached out to us, prayed for us, and asked how they could
help."
The Delaware County family retained a lawyer this week and quickly
filed their lawsuit, arguing the rule keeping Sarah off the list is
"discriminatory."
The Newtown Square family is challenging organ transplant rules that
say children under age 12 must wait for pediatric lungs to become
available. The Murnaghans say that rarely happens, and they want the
rule changed for all children in Sarah's situation.
Sarah's aunt, Sharon Ruddock, believes the 10-day window is long
enough for her niece to reach the top of the list and be matched for a
transplant.
"She definitely understands things have improved quite a bit," Ruddock said.
A wholesale policy change would add perhaps 20 children from ages 8
to 11 annually to the adult waiting list, which now includes more than
1,600 patients.
Experts, though, questioned Baylson's decision on both medical and ethical grounds.
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.
Sarah has been hospitalized at Children's Hospital of Philadelphia
for three months with end-stage cystic fibrosis and is on a ventilator.
Her doctors believe they can perform a successful transplant with adult
lungs.
On Tuesday, Health and Human Services Secretary Kathleen Sebelius
declined to intervene in the case, despite urgent pleas from several
members of Congress from Pennsylvania. Sebelius said that such decisions
should be made by medical experts and noted that there were three other
children at Children's Hospital alone in the same condition.
Bayles ordered Sebelius to instruct the Organ Procurement and
Transplantation Network to add Sarah to the adult list "so that she can
be considered ... based on the medical severity of her condition as
compared to the medical severity of persons over 12."
Sebelius has called for a review of pediatric transplant policies
amid the higher death rates for pediatric patients, but the Murnaghans
say Sarah doesn't have time for that.
"Now Sarah has a chance for a lung transplant, and I plan to keep
fighting for her and others who deserve to be eligible," said Sen.
Patrick Toomey, R-Pa. "Secretary Sebelius should use her authorities to
make medical need and suitability, rather than age, be the primary
criteria in determining how organ donations are prioritized."
Joel Newman, a spokesman for the Virginia-based United Network for
Organ Sharing, which manages the national organ transplant system, said
he isn't aware of any previous court action that had "a material effect"
on a transplant case.
UNOS sets policies based on feedback from expert committees that include both doctors and transplant recipients, Newman said.
Researchers have less data on lung transplants in pre-adolescents
because so few are done, and young children suffer from somewhat
different lung problems, according to Dr. John P. Roberts, the network's
president.
Click for more from My Fox Philadelphia
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