Skip to comments.Judge orders girl added to adult lung transplant list
Posted on 06/05/2013 2:34:10 PM PDT by blueyonEdited on 06/05/2013 2:46:14 PM PDT by Admin Moderator. [history]
A federal judge on Wednesday ordered the U.S. Health and Human Services Secretary to suspend existing organ allocation rules to give a 10-year-old Pennsylvania girl a better chance at a life-saving lung transplant.
U.S. District Court Judge Michael Baylson told Kathleen Sebelius to direct the Organ Procurement and Transplantation Network, or OPTN, to make an exception to the so-called "Under-12" rule as it applies to Sarah Murnaghan, who has end-stage cystic fibrosis, for at least 10 days, until a hearing on June 14. That move means that the girl can be considered more quickly for organs as an adult, instead of being limited to the pediatric transplant list.
The ruling, which grants a temporary restraining order, applies only to Sarah, although Baylson indicated that he would consider a similar move for another child in Sarah's circumstances, if a family presented the case in court.
Parents interviewed just on CNN...Sebellious made her determination last Friday not to intervene. The family was informed by a staffer via email...nice!
The family asked for a meeting which was scheduled for Yesterday, that was delayed three times later in the day...then postponed to Today...then postponed yet again.
Family said they could not wait for the meeting and that’s why they brought the lawsuit.
The sick part here is the left probably love this outcome => don’t like it, go grovel in front of a judge.
Sooner rather than later...more of the same and it won’t even be a noteworthy story.
This is the future under Obamacare.
Of course not, but that is a false analogy. General medical care is not the same as donor organs.
The OPTB is not rationing care, it is allocating a finite and very scarce resource so as to ensure the greatest benefit for the greatest number of recipients.
It does no good to allocate organs based on media representations and photo ops with cute kids. The criteria have to be medically based on success rates.
The desperate parents have used the media to create a firestorm of sympathetic yet ignorant do-gooders, while politicians grandstand for face time and the judge has opened a can of legal worms that I hope a higher court makes him eat.
Decisions on criteria have to be made. Are we going to do it with emotion or with medical science? Are we going to let anyone sue and have the courts second guess the medical experts opinions every time somebody doesn’t make the list?
You are making the assumption that there are others with a few weeks to live and she will be jumping the line. I would assume that those in the most critical need will be given the transplants first. It is not a given that someone else will die because she gets a transplant. It is done on a priority basis and the availability of organs.
I was just watching Sean Hannity and he was supposed to have Sarah’s father and aunt on the show but they had to rush back to the hospital, according to Peter Johnson who has direct contact with the family(And Sarah’s aunt) Sarah is in a dire situation tonight..please pray for this baby girl..let her survive long enough to get these lungs
My understanding is she’s already at the top of the list for pediatrics, which has little activity...I’m no expert but I’m not sure just how much this really increases her chances.
From the news coverage over the last day it sounds as though perhaps the dividing of the “lists” hasn’t caught up with the current state of medicine...personally I’d like to see one list and if someone on the list doesn’t meet the criteria for a particular transplant, because they’re too small, etc., keep moving down the list in order until you find someone who’s the optimal match for each situation. JMHO.
Thanks lj, ;)
1) I honestly hope the child does get a life saving transplant, and lives a long happy life
2) [the transplant] will not cure her of the disease, and soon [the disease] will destroy her new lungs
3) that twenty year old who died waiting for those lungs is still dead.
4) Go back to statement #1
Not sure why you’re interested in giving a lung to a fictitious dead person.
Good question. This rogue administration does not like being told how to act.
The experts will still have their say. The issue is getting her on the list so she can compete with the others using the existing criteria.
Some things in life - many, actually - don’t have a perfect solution. There often is no “this is the perfect way, everything will work just as desired, and all other choices are totally bad”. But if we use a proplerly calibrated moral compass, every decision gets much more clear, and at the very least good people can agree on what is really immoral/wrong and what way is moral/good.
Knowing that the results aren’t guaranteed, not everyone will agree, etc.
Some things about this material world just plain are rotten, and the only way through is prayer, developing humility and an attitude of surrendering to the will of God, and personally trying to always do what is right, come hell or high water.
My understanding is that the childs parents dont want their daughter bumped to the top of the list or over anyone who is sicker and in more urgent need no matter their age.
Their gripe, which may have some merit IMO, is that children 12 and over and adults, who meet the criteria for eligibility for a lung transplant, are given a multifaceted allocation score from 0-100 that ranks them on the list based on the urgency and severity of their condition. Children under 12 however are ranked based on how long theyve been on the list for adult lungs without any respect to their urgency or severity. And children under twelve are only classified as Priority 1 or Priority 2 for either adult or pediatric lungs, although they are given priority over adults for pediatric lungs, but being pediatric lungs being much more rare and also that given the Priority 1/Priority 2 classification means that in some cases, a child in a less urgent need could receive a lung transplant before Sarah and many more adults much less sicker and in urgent need than Sarah could and will receive an adult lung ahead of her.
Supposedly the reasoning behind the different scoring systems for those under 12 is that there simply isnt enough data on the outcomes for those in the under 12 age group to score them using the same criteria as adults. But then that is because so fewer lung transplants are performed in this age group simply because so fewer pediatric lungs become available for transplant and fewer in this age group medically qualify for adult lungs and those who do rarely live long enough to receive one. And keep in mind that what data is available for the under 12 age group also includes children much younger than 12, much younger than Sarah who unlike Sarah and probably some others near but not yet 12, would not be good candidates for an adult lung. Some doctors, including Sarahs are saying that the scoring system for those under 12 is arbitrary and outdated, that cutting off access to the much more extensive and medically sound allocation scoring at age 12 is not supported by more recent medical developments and diagnostic testing.
I think the basis for their asking for an exception to the 12+ rule is that the rule is arbitrary based only on chronological age and not based on size, weight, being a candidate for an adult lung and where her allocation score would put her on the waiting list if she was 11 years, 11 months, and 31 days old plus 1 day.
Her parents claim, and I dont know if this is true or how to verify it, is that Sarahs doctors say she is an excellent candidate for an adult lung with a good, although not guaranteed prognosis but probably no better or no worse than a similarly situated adult, that based on the an allocation score that her doctors gave her and would be given to those 12 and older, (Im guessing that she is closer physically to a 12 year old than a ten year old), shed be near the top of the transplant list, but because she is only 10 years old, she is way down the list for an adult lung based only on the fact that some adults who are less sick have been on the wait list longer.
There are sometimes very hard choices to be made when many more people need organ transplants than there are organs available, that I understand. And I’m not saying that cute little girls just because they are cute little girls and their parents are media savvy and get public and media attention and who bring lawsuits, should be given priority over those in greater need or that a scoring system, a scoring system that while it may seem cruel to those who don’t score high enough and have to wait or for those that don’t qualify for a lung transplant because they may have or had cancer or are obese or had been smokers within the last year of their diagnosis, or are 65 or older or any number of objective medically based determining factors that determines who is the best and most deserving candidate based on need and likely best outcome, isn’t necessary. But it seems to me that setting an arbitrary age criteria, without any respect to other medically verifiable criteria, makes no sense. If she has been determined to be a good candidate for an adult lung and her allocation score puts her near the top of the list; that is where she should be, not on the bottom of the adult lung waiting list simply because some who are much less sick have been waiting longer or because some bureaucrats rather than medical professionals determine that the cutoff age is 12.
You got the story wrong .
The transplant Doctors made the request but federal guidelines prevented the person from being on the list .
The federal guidelines are dated and created 30 years ago and even updated for modern technology and body types.
Insurance companies use these federal guidelines as an excuse to not pay for
Not everyone in the transplant list will be compatible with each lung available .
It a good thing to modernize theses lists for children
From Rush Limbaugh transcript:
“I lit a cigar in honor of Sarah Palin right as the program began.
Death panels. Just exactly what Sarah Palin said, exactly what we all knew. Obamacare establishes death panels, and right now Sebelius is it.
And that’s what Obamacare says. I don’t know how many times it says it in there, but the phrase “as the secretary shall determine,” meaning the secretary of Health and Human Services.
Well, Sebelius has determined a 10-year-old doesn’t get the lung.
She doesn’t get a lung transplant ‘cause she is 10 years old, and you have to be 12 to get a lung transplant under the current regulations.
Her congressman has begged Sebelius to waive the regulation, but she has refused.
The congressman’s a Republican. Of course Sebelius would refuse.
But I remember how people laughed. I remember how the media said, “Ah, you Republicans, ah, you conservatives, you’re just over the top. There aren’t any death panels. What are you talking about?”
Look, I’m not even gonna sit here and say that Sebelius is wrong not to not intervene, but they’re death panels.
The government’s making the decision who lives and dies. “
The child doesn’t fit the criteria of the adult list to begin with. The cut off age of 12 is because the average adult lung does not fit the average child under the age of 12.
They didn’t pick that criteria out of thin air and the courts have no business second guessing the expertise of the transplant board.
apparently there have been medical advances since 2005 when the boards standards were last updated.
The guidelines are not 30 years old. The OPTB is 30 years old. The lung guidelines were last updated in 2005-6.
I don’t know if they have enough new data that indicates a change is needed.
Wow ! common sense and some compassion wins the day.
But from the articles I’m reading that’s what they are doing now...whoever has the best match and chances of surviving...especially for lung transplants, which appear to be very different from kidney and other organs.
Why does the government manage a scarce resource? That’s a recipe for shortages and death.
>> the expertise of the transplant board.
What a good Obamacare tool you’ll make.
It was bureaucracy that took it on the chin, not the experts.
Your reply has multiple factual errors.
She has not been denied a transplant. She doesn’t meet the criteria for the adult list, she is on the pediatric list.
The criteria are medically and scientifically developed by the Organ Board and Sebelius is right to not interfere in their operation and the judge is wrong to do so.
The Organ Board is a life panel, not a death panel. They make transplants possible. Otherwise, since you can’t exactly run out to the corner organ store to pick up a lung or liver, you die.
I’m sad that Rush has not appropriately used half his brain to think this through clearly and is simply using it as a target of opportunity to bash the administration.
Oh please, the transplant board predate Obama by 30 freaking years.
I’m tired of the wrongheaded partisanship that is throwing the baby out with the bathwater on this issue.
Sebelius should be fired, put out pasture!!! Instead of Freepers giving their opinions....blah, blah, blah......they should be united in efforts to bring this dangerous Obama witch down!!!
Just look at your kids or your grandkids, and put yourself in the position that little Sarah and her family are in. Sebelius is no public servant of the people. She is cold hearted, not compassionate at all, and could care less if this innocent girl and others live or die!!! But.....in life, “whatever goes around comes around”!!! The acorn of the Obamabots tree does not fall far from Obama himself. This disgusting, uncaring woman belongs in the temple of worship with the likes of Hitler and company!!!
I have notified both my USA senators to call for her job termination, immediately, without severence or accumulated benefits or pension. Her outright refusal to assist this family and her neglect in notifying them or refusing to meet with them is shameless, cold, calculating, indifferent to life itself!!! I suggest, rather than rant your viewpoints, you send a message to the tyrants that now control our nation, that you will no longer tolerate their tyranny!!! Call for Sebelius to be fired, NOW!!!
Yes there are criteria based on averages and norms. However, the doctors responsible for this 10 years and 9 months old girl have deemed that she is capable of receiving an adult lung. Medically, it is deemed not a problem. The issue is bureaucratic and a "we have rules" mentality. It is what happens when government takes over health care.
There is a reason why the Secretary of HHS has wavier authority, i.e., to make common sense exceptions. Would you be saying the same thing if the girl was 11 years and 9 months old? And the exception is just to get her on the list. Then other criteria govern when she would get a lung.
They didnt pick that criteria out of thin air and the courts have no business second guessing the expertise of the transplant board.
You are missing the point. The court is just getting her on the list so the transplant board can make a decision. Right now, the transplant board is not in the picture.
These kind of decisions will be made under Obamacare in much the same way they are done in the UK's NHS. You reach a certain age and you are no longer eligible for a hip transplant. I would prefer that the patient be the one rationing health care and not a government bureaucracy. There are ways to do that in patient centered system where the patient has control over the resources and must decide what is in their best interests, medically and financially.
Now this makes more sense. I am taking it there is no actual "line jumping" going on since she is now in the adult pool?
She has a tough fight ahead, that is for sure...
For clarification. There could be five patients in a region that are all equally A1 graded. If an organ becomes available it then comes down to which of the five is the best match to the donor. Blood type, weight, height, and organ size then become the determining factor.
Technically yes. My right lung was removed due to cancer. I’ve been living cancer free with one lung for five and a half years.
It was major life changing surgery. They had to cut through ribs and muscles. It’s still painful every day, and I expect it always will be. With only one lung, I don’t take in as much oxygen, which causes another set of problems. The surgery is extremely risky. I don’t know the percentage of people who die from it, but the day I got my surgery there were two others there getting the same procedure. They both died that day. I nearly died because of a leak at the incision.
I doubt that any ethics panel would approve the donation of a lung by someone expected to go on living. The risk to the donor is too great.
I applaud your bravery in asking the obvious question. The short answer is: No one knows. Oh, sure, there's tons of rules that govern the donation list, but an empowered and motivated transplant team can make all the difference in someone getting the transplant they need, and going without.
The longer answer is much more positive. Thousands will live because of this little girl's plight. Organ donation is something a lot of families struggle with each year. Sometimes it is easy, the donation has already been agreed to by the person. Many times, it is a family struggling with sudden tragedy. Every time a story goes up about some death row inmate getting an organ transplant, it curbs donations. And every story like this one about a small girl fighting for a chance at having a life increases them.
And I think that if you asked those who are at the top of the donation list if they'd be willing to step aside for someone like this little girl, they'd probably agree, which is precisely why the rules don't allow that.
All in all, this ruling is a net win for those on the transplant list.
From what I heard today, opening up the Transplant Program to Children will add just 20 people to the Adult Donor list.
If there is not a Medical reason for not using an Adult Lung, why are Children on a separate Donor list in the first place?
There are currently 1600 people on the Adult Donor list.
Let me add, it is amazing that a couple of Drunks, (the late) Larry Hagman and David Crosby got new Livers to replace their (self inflicted) Alcoholic diseased Livers.
Since the transplant board sets the criteria, they are most certainly in the picture. It is their criteria that is being set aside.
The point you don’t get is that organ transplants are not like other types of medical care in that transplants are a zero sum game. Organs aren’t rationed, they are allocated if/when one becomes available. It’s not some procedure that can be rescheduled another day with a different widget that is made by 3 different manufacturers.
Ah the “death panels” argument.
but lobbing politicians could be good too. if you used a catapult ot trebuchet...
Thank you...this though will get tricky I think with the media involved etc.
I am still confused how the government and now a judge are involved in making this decision. This will quickly become a national debacle, it is stunning.
>> Oh please, the transplant board predate Obama by 30 freaking years.
And Roe v Wade established for 40 years. So it must be good.
>> Im tired of the wrongheaded partisanship that is throwing the baby out with the bathwater on this issue.
Concerned about throwing out the babies, but not the little girls. Aren’t you the level-headed guardian of life.
Bureaucracy doesn’t adapt well to the real world. Stop defending it at the expense of hope and possibilities.
Yes it is stunning...and should not have come to this IMO. Now people will surely be ‘seeking the media’ to carry their plights..and the media “Decides” who gets heard or not..and thus become the deciders in a sense.
Frankly I have a problem with the parents. This is so out of hand. Why ‘show’ your “Dying” daughter and blowing bubbles in a room full of them celebrating...I don’t get that. ...she’s still dying.
It’s becoming a “show” ...and if she gets this lung..it’ll be one photo shoot after another. If she doesn’t and dies...then the funeral and the outpouring of flowers etc. will be.
It’s pretty awful to see this all become as it’s playing out...or the potential...I say this because of all the dying children who haven’t had this “show” of their plight. Really sad.
My original question was, are you comfortable with federal death panels?
Or do you believe that bureaucrats, politicians, judges, lawyers, IRS agents and the like will not be instrumental in deciding who lives and who dies?
And do you not agree that what we see here is not so much that a judge did a no-no, bad judge, but that the can of worms was going to bed opened like this anyway? That it was inevitable?
And that we are SCREWED by this monstrosity that is headed our way?
You sound like some automaton incapable of thought. Their criteria has not been set aside. This girl as been on the pediatric list since 2011. It was only recently that the parents learned that there were two lists--one for children and one for "adults" 12 and above. The judge has just ordered that she be placed on the adult list. The criteria used to determine who will get a transplant will be applied to her just like any other person on the list. The only criterion "being placed aside" is age. Again, would you say the same thing if she was 11 years and 11 months old?
Her doctors who have been treating her say that she can accept an adult lung. The HHS Secretary has wavier authority to address such instances.
The point you dont get is that organ transplants are not like other types of medical care in that transplants are a zero sum game. Organs arent rationed, they are allocated if/when one becomes available. Its not some procedure that can be rescheduled another day with a different widget that is made by 3 different manufacturers. ,
I am well aware of how the organ transplant system works. The issue is really the following:
In their motion, the Murnaghans challenged an OPTN rule that distinguishes between pediatric and adult transplant recipients. The existing rule says that children younger than 12 can receive organs matched for size and age from other children, with sickest kids receiving top priority. But the rule also says that organs from adult and teen donors must be offered to all patients older than 12 from Sarahs region first -- even if Sarah is sicker than the other recipients.
The parents contended that the under-12 rule violates the command of the National Organ Transplant Act of 1984, which allows for equitable distribution of organs that address the unique health care needs of children.
They said that Sebelius refusal to set aside the rule and allow Sarah and others in her rare situation to compete for organs based on the severity of their illness, not their age, is arbitrary, capricious and an abuse of discretion.
That’s kind of a dingbat question. Nobody ordered that she get the transplant in question. The order only specifies that she be considered as a recipient, totally subject to the normal medical selection process.
The government would not allow her to be even considered medically. The judge changed that. But cheer up, she can and likely will still be rejected for any of the numerous reasons other people are. However, they can no longer point to her age as the only reason they reject her.
Your argument makes no sense unless you argue that even if she is a fine match medically, has a fine chance for success, and is also the most in dire need of all possible recipients, that she should be excluded solely based upon her age.
You are right. If we had more donors this would be less of an issue.
Good...prayers answered. Now we can just hope and continue to pray that a suitable donor is found in time.
Almost all organs harvested in sparsely populated areas are sent to biggest city hospitals,, and are not made available locally to the many hospital programs that could use them effectively. Worse, some cities like NYC train their EMS on thinking “potential donor” instead of “patient”.
NO way I would sign my card. It’s nuts to give them the slightest incentive to go ahead and write you off. If a person wants to donate, the best way is to tell trusted next of kin and let them decide when you really are beyond recovery.
Great News...According to my Bible, Jesus loved children above all others...too many Scriptures to even begin to list...
So the idea that adults would trump children???
Have they never been on a ship...Women and Children first etc
I wonder if they will appeal?
Do you not understand that this is a TERRIBLE precedent? Now anyone who can rabble-rouse loudly enough can bully their way into higher chances than someone who can’t score as many “likes” and “upvotes”.
It should be an open market. Whoever can pay should get. None of this sacred-cow queuing by who applied first stuff.
Exactly how do you plan to have a market in human organs without government involvement and oversight?
On one hand you say that the parents were the ones who brought in the government, but on the other hand your second statement tacitly assumes that the government already has involvement and oversight. Which is it? The two statements are not coherent..
The first question that occurred to me when I saw this story is why the parents of a child have to beg a government bureaucrat like Kathleen Sebelius for permission to save their child's life.
Here is the Selected Statutory and Regulatory History of Organ Transplantation from the Government Alphabet Agency HHS. Where there are laws and regulations there are going to be attorneys and courts. When bureaucrats have the power to make life and death decisions then people have the right to challenge those decisions in a court of law. If you want the government involved then the courts are inevitably going to be involved as well.
The ruling simply places her on the list. There is no guarantee of a set of lungs. She still has to meet the other requirements, and compete with other patients. Your comment is, in my opinion, offensive.
Bookmarked. A page of history is worth a volume of logic. Thank you.
I overheard one lawyer (who probably hadn’t had time to read the full opinion)say they DID use age discrimination and that the judge’s opinion was based on the 14th Amendment.
My point is, the transplant system is not a part of Obamacare and has nothing to do with the monstrosity headed our way.
Continually conflating the two and trying to use the one to bash the other is the worst sort of obvious partisan gamesmenship.
Obamacare sucks rocks, but it has nothing to do with how the OPTN operates.
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