Skip to comments.Lawmakers Urge Sebelius To Let Dying Child Have Shot at Lung Transplant
Posted on 06/04/2013 12:38:30 PM PDT by drewh
House Republicans on Tuesday pressed the countrys top health official to cut through the government red tape in order to let a dying child have a chance at getting a lung transplant, as Health and Human Services Secretary Kathleen Sebelius continued to argue that the situation is "difficult." Sebelius, ultimately, did not say what the government would do in the high-profile case of 10-year-old Sarah Murnaghan, who is dying from cystic fibrosis but cannot get an adult lung until they are offered first to adult patients.
Georgia Republican Rep. Tom Price, a doctor, told Sebelius that he understands the federal policy and appreciates her sympathy about the situation. But, he said, she can save the childs life by signing a paper. Price cut off Sebelius during a Republican-led House committee hearing on the departments 2014 budget proposal, as she was talking about how she personally talked to Sarahs mother.
Price, said the child could die during the review process, considering it includes a lengthy public-comment period. Im begging you, Rep. Lou Barletta, R-Pa., said. Sarah has three to five weeks to live. Pediatric lungs are rare, and the Murnaghan family thought their daughter would have a shot at a transplant if she made a list of adults. Sebelius repeated that surgeons and transplant doctors say the probability of a successful transplant is low when a child as young as Sara receives an adult lung. However, Barletta and others say Sarahs doctors think the transplant could be successful.
Republicans at the hearing also got support for Pennsylvania Rep. Patrick Meehan, a former U.S. attorney, who said his review of federal policy shows Sebelius could a make the exception without upsetting precedent or violating consistency of allocation policy. He also suggested the child is a victim of age discrimination
(Excerpt) Read more at foxnews.com ...
I vote to give her Sebelius’s lung. Has to be a better place for the lung than where it is now.
Notice how her own comment contradicts itself.
I would suggest, sir, that, again, this is an incredibly agonizing situation where someone lives and someone dies. The medical evidence and the transplant doctors who are making the ruleand have had the rule in place since 2005 making a delineation between pediatric and adult lungs, because lungs are different than other organsthat its based on the survivability chances.
Well how about this, you ass, the chances of this girl surviving without a transplant are...ZERO!
Good God in Heaven, what a monster such people are. Trying to throw all of this illogic at us and just have it be accepted.
I am willing to bet if it were her ten year-old daughter, or grand-daughter, the rule would be waived somehow...bercaue, you know, they are the "beautiful" people, who are meant to rule over us.
This attitude is going to catch up with these people in psades some day. As far as I am concerned, the sooner the better.
Line jumping will affect the person who WOULD have gotten it if the little girl doesn’t.
The little girl’s life is not worth more than whoever’s next in line, or vice versa.
I do not want the government deciding who gets, who doesn’t get, an organ.
Guidelines that everyone follows were put in place for all of us so we don’t have a popularity contest when the next liver comes up. That’s the point of guideline, because loved ones are dying, often in agony, and no one can possibly make a rational decision in that scenario.
So we make standards and we get in line and it’s “fair,” fair as we can make it, without emotional appeals and who-gets-the-most-press and who-has-the-best-connections.
So... she should be jumped ahead of other kids, young adults, etc... why?
Sad story, but likely no sadder than other folks who will die in the next few weeks unless they get a lung.
I notice that the reps advocating for the girl are both Republicans.Democrats remain notably silent it seems.
I completely agree with you and am having trouble understanding how people just can’t understand this.
Do we really want a cabinet level appointee overriding the OPTN and deciding who should get someone else’s vital organs? And I thought the IRS scandal was frightening.
The parents are not merely asking to give a child an adult’s lungs they are asking to skip ahead of others on the registry and they are trying to do so by getting the drive by media to gin up a national emotional response. They deserve our prayers and empathy but they do not deserve special favors from Kathleen Sebelius.. Whom shockingly I happen to agree with on this occasion ( it is more likely however that I agree with her lawyers:)
Unless they are going to just let a set of lungs die, I don’t have an issue with following the rules. There has to be some basis for the decision, and as sad as it is, a decision has to be made.
Agreed, we shouldn’t have decisions like this made on the basis of who is able to mobilize a press campaign. The nameless, faceless “other” person who would die without a lung isn’t worth any less. But God bless this girl, hope she finds a miracle.
Also, I’m betting that the parents’ voter registration isn’t conducive to her receiving the lung transplant.
From a philosophical and personal religious point of view, I'm opposed to transplants (human or animal) and even blood transfusions....but my view has never been tested by it being a loved one who needed a transplant.
” Good God in Heaven, what a monster such people are. Trying to throw all of this illogic at us and just have it be accepted. “
Worse than Al Capone, and Obamacare will make Capone look benign by comparison.
The issue is not whether she should be allowed to jump to the front of the line but whether she should be allowed to even get in line.
Her doctors say that an adult lung transplant would be successful, but federal rules says that she cannot get on the waiting list for an adult lung until she is 12.
Expect a lot more of this when Obamacare goes into effect. It doesn’t matter what your doctor says you need if the federal government says you cannot have it. On the other hand, 10 year olds will get free birth control and abortions.
Yeah, like the others... the heart says “make it happen” for that little girl... but what about the individual who’s next on the waiting list? And what happens when the next CF victim’s family steps up and says, “Do the same for us!”
It’s a tough call and I’m glad I don’t have to make it.
All that said.. I still despise, for so many other reasons, Kathleen Sebilius.
Exactly! She can’t get IN the line. Federal rules for lung transplants? There will be thousands of stories worse after 2014.
Per an AP article at http://apnews.myway.com/article/20130604/DA6MPFHG2.html her private gov’t email address is:
“The AP decided to publish the secret address for Sebelius - KGS2(at)hhs.gov - over the government’s objections because the secretary is a high-ranking civil servant who oversees not only major agencies like the Centers for Medicare and Medicaid Services but also the implementation of Obama’s signature health care law. Her public email address is Kathleen.Sebelius(at)hhs.gov.”
Here ya go Freepers: Sebelius’ secret email address. Let Sebelius know what you think.
For once I will agree with Sebelius, that this is a medical decision. It is also the “rowboat” paradox.
Giving an adult lung to a child is less likely to work than giving it to an adult. Giving it to a cute little girl with a terminal disease means that some (over 14 years old) “adult” who could have lived will likely die.
The median predicted age of survival of children with CF is the mid-30s. They will likely have other serious internal organ problems, not just lungs.
So, here is a gun. In front of you are two cute girls. One is 10 years old, with a terminal disease, the other is 14 years old, who maybe doesn’t have a terminal disease. You decide which one to shoot.
Unfortunately, it's not that simple.
Without an adult lung, the little girl only has weeks to live. Her condition is that serious.
But maybe the next adult on the list has a condition that is far less serious, and perhaps that adult could live for years while awaiting a transplant.
And what about the percent chance of a transplant being successful in each case?
This situation is difficult, and heartbreaking. The only thing I know for sure is that I would want a team of medical doctors looking at this.
I would seriously consider shooting the person who gave me the gun.
“As the Secretary may determine....”
By the way, Kansas, thanks a lot for this witch.
It’s not just about the little girl’s life, but also the person who gets line jumped based on emotion laden media optics.
Should an organ be given to a person with a 10% chance at success over another person with a 70% chance of success just because the former is child and the latter is an adult.
Sorry, but this decision should be obvious. Cruel, but obvious.
I like that.
As a side note concerning the fact that the states have never delegated to Congress via the Constitution the specific power to regulate, tax and spend for public healthcare purposes, please consider the following.
With all due respect to Terri Schiavo’s family, note that the Supreme Court woudn’t address Terri’s case for the following reason. The Founding States had made the 10th Amendment to clarify that Constitution’s silence about things like healthcare and euthanasia means that government power to address such issues are uniquely state power issues, the feds’ denial of a lung transplant for this girl based on wrongly usurped state powers like Obamacare is imo.
The problem is that this is not being treated as a medical decision. It is a bureaucratic one.
Her doctors say that an adult lung transplant would be successful. The government says that she cannot get onto the waiting list.
If this were being treated as a medical decision, then she could get on the organ transplant list and her suitability for any transplants would be determined if and when any donated lungs become available. On any organ transplant list, it is not simply a matter of being next in line but whether you are the best match on the list for any organs that become available. Factors include your genetic compatibility with the donated organ, your health and likelihood of surviving the transplant at the time an organ becomes available, and how close you are to the donor who just died. Generally, there is a window of no more than a couple of hours between the time an organ donor dies and a transplant is made, so there is a lot of pre-qualification screening that has to take place.
Since this is being treated as a bureaucratic decision, however, she simply needs to accept the fact that she is going to die regardless of whether or not her doctors say that she can be saved.
In either case, people like Sebelius should not hold the keys to that decision. Nor, IMHO, any other govverment employee. The opportunity for corruption is just too great.
As it is...they do, so we have the right to petition them to make changes and a large enough group of people doing so can make a difference.
They way it should work is that the Doctor and local hospitals should be working to find a doner...and if they find one willing locally, or one elsewhere that could work, and can make it happen, then they should be allowed to do so. My feel here is that there is not necessarily a shortage in this case of organs that could be used...there is just a question of the age issue which has been in place since 2005.
I personally hope this little girl gets her chance. And will pray that God in HEaven can make it happen.
Sebelius is refusing to use her position to intervene in the Organ Procurement and Transplantation Network rule making process, and you’re complaining that she’s abusing her authority.
Your position is incoherent and emotional. Your “feel” that there is not a shortage of adult organs is just that, an emotion, not a fact. If they had extras with no takers, there wouldn’t be a waiting list.
Bottom line, the Organ Board has a medically developed criteria and the family is demanding it be ignored so their daughter can jump the list, which will invariably push others farther down.
Have her parents had themselves vetted for live donorship??? Why is the possibility of a partial live donation not mentioned in any of the stories??? Publicity is the best way to find a live donor, yet the family is focused on list jumping.
If the American people could vote on this, I think Sebelius would defeat the poor child. The American people don’t like the government pay for health care unless it is their own.
That, is an entirely different argument.
It sounds cold but I agree that if a board of doctors made this rule and it makes medical sense because an older person has a better chance of survival, then the older person should get the lung. Just because a little girl is cute and likely will die without the lung is not a reason to let her have it if there is someone else with a better chance of survival who is willing to take it. We cannot base policy decisions on gut-reaction sympathy. I really don’t mean to sound cruel but if someone else gets the lung and this girl dies as a result, so be it.
As I said, the government should not be involved in this process IMHO. You feel differently. Fine, apparently we disagree. Big whoop.
But since they are involved, using the avenues of our Republic to petion them is perfectly worthwhile.
My hope is that we will return to a more sane policy and let the medical profession, through working with their patients and the facilities that are available, work out the issue.
The fact is, the girl will die with no transplant. She has a chance to live with one. That is simple to understand. It is understood that there are waiting lists. The storuy makes that very obvious. I hope the girl gets a lung, despite that. Apparently, because of the rules, there ae=re two lists. I do not know how long she has waitred relative to others.
However, I have faced a similar circumstance...luckily for me, before the implementation of the Obama Care program and its mentality. My rare Chordoma Cancer involved my entire sacrum with three additional spots in my illium.
The doctors at MD Anderson who sat on the board for the proposed surgery were not sure it would be worthwhile to operate on a 54 year old man, because they feared it had already spread. The facility and its resources are finite. Tough decisions hghad to be made.
However, my cancer had not spread to the soft tissue and so my Dr., Dr. Rhines at MD Anderson, percervered and the approval was given there, by the professionals on that board.
My insurance company did not have a vote in it. They would either pay for it (and they did) after my deduction, or I would have been put on a financila plan by MD Anderson to pay on it the rest of mmy life.
The very difficult and involved three surgeries were performed, with multiple surgical teams in each. They were successful. I was in the hospital for over three months and then spent a good six months in very internse therapy.
As a result I can walk, work, and am living out my life with the resulting disabilities.
And you know what...if I had heard or knew that a 10 year old was going to die unless I gave up my position on the table...I would have done so. But the Dr.s assured me things were not that dire and no one would have to "die" for me to take my place there.
As I said before. I hope and pray this girl gets the organ, the procedure and her chance to live. Praying for that to occur is not emotional or non-coherant. it is an act of faith.
Petitioning my representatives to help is not emotional or non-coherant, it is working within our constitutional system to try and impact an outcome.
You have the right to petion otherwise. Knock yourself out.
Given the chilling discoveries of the IRS scandal, even a rational person who discards most conspiracy theories, would have to admit a similar possibility could exist with Obama’s henchmen making the calls on who gets what care.
You are demanding a political override of a medical board’s decision, while stating it should be a medical decision. That is incoherent.
Well, the Organ Transplant board has decided, so why should the government intervene with their non medical, politicized decision making power.
Leave the Organ Transplant Board alone. Every TDH is now going to demand an appeal and congressional hearing regarding their place on the list and what criteria placed them there, is that how we’re going to do it now?
Because that is what you are demanding.
It’s great that your doctor persevered, but you said so yourself, nobody else was going to die or lose their chance at treatment as a result of your treatment. That is not the case here, so don’t try to draw an analogy between her treatment and yours. They are not in any way equivalent.
Again, where is the news about finding her a live partial lobe donor???
So does everyone else on the waiting list. Why should the criteria be ignored for her and not for everyone else. Why should she be made an exception and not everyone else. Why her and not some other pitiable dying person. That is why the Organ Board developed the criteria in the first place. So now we should just pitch it, because why again??? Your point or philosophy on this issue truly eludes me.
The government has created the situation and I have no problem using their interference against their desire to do so. That is coherant and something open and available to her and her family.
As I said, there are two lists. I do not know the waiting that has gone on one relative to another.
I do not believe every donor is going to demand any such thing. Their representatives will look at each case and decide on its merits. And yes, that is how we do things when these idiots open the door to it.
I doubt very seriously that that current board, in this environment is anywhere near as "professional," as you imply.
What do you want to bet if it were the child or grandchild of Sebelius, an exception would be found? Or the Obama's daughter for that matter. Do you doubt this?
The process has already been politicized and it will take a huge effort to turn back the clock, and the people who will do so are going to have to be the people.
As I said, in the mean time, I pray these folks are successful.
Do you have a ten year old daughter or child? Have you ever?
Can you seriously sit there and tell me you would not use every effort and avenue available to you to save her life?
I have five kids. You may think such things are purely emotional. They are not. They are driven by the most basic moral values we have...the desire to preserve life for our children.
As long as they are operating within the law, and as long as they put their faith and trust in God...I urge them on. And hope they succeeed.
No need on my part for further discourse. You have voiced your opinion on the matter, and I have said my piece. I wish these folks the best and hope they are successful in their efforts.
The government did not give this child CF. That’s just the luck of the draw in life.
The federal government is in charge of this because trafficking in human organs across state lines is interstate commerce.
Would you prefer unregulated interstate commerce in human organs???
They sensibly created a medical board to establish medical criteria for parceling out precious organs.
There are no other “legal avenues” to obtain a transplant. The parents choice to pursue a publicized and politicized in circumventing the legal path based on the established criteria is understandable, but unethical and unfair to everyone else.
Prayer is really the only option and you’re basically praying that some other child die so this one can have their lungs.
There is no denying the tragedy in this story, but I believe the system has been set up properly and should not be interfered with by congress or Sebelius.
I have 4 children and and 25 nieces and nephews, one of whom needs a full heart/lung transplant.
Now, we go begging to the federal government for our health care problems.
I am not praying another child dies. Those are your words. I am praying that this child lives. There is a huge difference.
I do not believe the federal government sets up anything very sensibly. If they provide the proper amount of macro oversight, and allow them to do the job of defending the country, the US Military (all of whom swear to uphold the copnstitution) may be the best opportunity to beat that rule.
But, you do as you please and advocate as you will. I pray that your own niece or nephew will get their transplant as well. And that you will do whatever you can legally to effect that for the positive. I pray your own children never have to be faced with such a crisis...but if they are, I pray that you will be able to stand and do whatever you can for them as well.
My five kids are all grown now, but we have nine grandchildren to date and would and will do anything legally and with our faith to help them in such circumstances. It is what we do.
That is what these people are doing.
I freely admit that I have no idea whether a lung transplant is feasible or not. But if I ever need any organ transplant, I want my doctor to be able to decide if it is feasible and not some bureaucrat working for the federal Department of Obamacare.