[Congressional Record Volume 159, Number 79 (Thursday, June 6, 2013)]
[Senate]
[Pages S3978-S3979]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                        ORGAN TRANSPLANT POLICY


                            Sarah Murnaghan

  Mr. TOOMEY. Madam President, I rise to speak briefly about a 
heartrending situation in Pennsylvania to wich I wish to call my 
colleagues' attention. As I speak this morning, there is a brave little 
10-year-old girl who is fighting for her life in Children's Hospital of 
Philadelphia.
  Sarah Murnaghan suffers from cystic fibrosis. She has been in the 
hospital for 3 months now. Recently, she has been put on a machine that 
helps her breathe, with great difficulty. But she is at a point now 
where she needs a lung transplant. There is no question

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about that. The doctors, in fact, have said she may only have a few 
weeks to live without a new lung.
  At this moment, her government is failing her. Here is the reason I 
say that. We have law and we have policy that requires that the Health 
and Human Services branch of the Federal Government, through a third 
party, develop rules governing how organs are transplanted. This 
organization which has the direct authority is the Organ Procurement 
and Transportation Network.
  So they set the rules by which we deal with this excruciating 
situation where there is always more demand for transplanted organs 
than the supply of organs. Prior to a decision yesterday afternoon, 
which I will comment on, despite a very high need for a transplant and 
despite the fact that her doctors believe she is a very good candidate 
for a transplant, Sarah's name was not on the list of people to receive 
a transplant simply by virtue of one fact; that is, she has not yet 
reached the age of 12.
  See, the current policy has one very sensible feature. The current 
policy is meant to establish as the highest priority for recipients 
people who have the most urgent need. That makes sense. You could have 
other criteria, such as how long you have been waiting or how much you 
are willing to pay, but I do not think those would be better. Those 
would be worse.
  The right criteria is who has the most urgent need. So that is right. 
The problem is it applies only to people who are 12 and over. But there 
are children under the age of 12 who are very good candidates for adult 
lung transplants. The medical science is very clear. You take a portion 
of the lung if the child is too small for a full lung transplant. This 
is well established. This works. This girl is a good candidate for 
this, but she is not on the list.
  Yesterday, something very important happened. Sarah's parents filed a 
suit against Health and Human Services challenging the rule that 
excludes their daughter from this list. The judge considering this, a 
judge in the Eastern District of Pennsylvania, a Federal judge, Judge 
Baylson, granted a temporary restraining order enjoining the Secretary 
and the Organ Procurement and Transportation Network from applying the 
rule that excludes Sarah.
  So this is terrific. This is a big breakthrough for 10 days now. This 
is the thing. It is a temporary order for 10 days now Sarah cannot be 
excluded from this list. So what that means is she can go on the list 
and she will go wherever on the list the urgency of her circumstances 
puts her. That is as it should be.
  The problem is this is only for 10 days, and then the judge is going 
to have a hearing. We don't know how that is all going to turn out
  I am asking Secretary Sebelius, the Secretary of Health and Human 
Services, to exercise the authority that is given to her in legislation 
to recognize that there is a flaw in this policy.
  I am not asking Secretary Sebelius to make an exception for one 
individual. I would be the first to suggest that would be a dangerous 
place to go. We don't want individual Cabinet members, politicians, or 
anyone else making decisions about who is going to get an organ and who 
is not. We want a system that works. The current system doesn't work 
for kids who are good transplant candidates and have the acute need but 
aren't yet 12 years old.
  I am urging Secretary Sebelius, as strongly as I can, to exercise the 
discretion that the law gives to her to change the policy. Don't change 
it for one person, change it for a category. I think any child who is a 
viable candidate for the adult transplant and who has sufficient 
urgency ought to be able to go on the adult list. That is not to say 
that they automatically go to the top of the list. Their ranking on the 
list ought to be determined by the urgency of their circumstances, as 
it should be for everyone else.
  I would argue we are not suggesting that we make an exception for 
Sarah. What I am suggesting in a way is the opposite: Stop making 
exceptions that exclude Sarah. She is a good candidate. The doctors 
believe this.
  Children's Hospital of Philadelphia is one of the best children's 
hospitals in the world. Nobody disputes that. Her doctors are some of 
the best doctors in the world. This is vitally important. The life of a 
small child depends on this. I don't know how many other children might 
be in similar circumstances.
  I appreciate the opportunity to rise and make this case. Again, I 
just want to stress that we are not asking for an exception for one 
individual to be chosen over others. We are asking for a change in a 
policy that is flawed; that is currently excluding somebody from being 
on the list to be an organ donor recipient who ought to be on that 
list.
  I am grateful to Judge Baylson for the decision he made, but that is 
a temporary restraining order that will only last 10 days. If a 
transplant does not occur within that 10 days, then Sarah and any other 
children in her circumstances, their future becomes uncertain after 
that.
  I urge the Secretary to take the action that is necessary.
  I note the absence of a quorum.
  The PRESIDING OFFICER (Ms. Baldwin). The clerk will call the roll.
  The legislative clerk proceeded to call the roll.
  Mr. THUNE. I ask unanimous consent that the order for the quorum call 
be rescinded.
  The PRESIDING OFFICER. Without objection, it is so ordered.

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