The politics of organ transplants

posted at 8:31 am on June 15, 2013 by Jazz Shaw

Since we last met, there’s been a number of roller coaster announcements in the story of Sarah Murnaghan, the Pennsylvania 10 year old who recently underwent a double lung transplant operation. Sarah’s mother Janet had become a regular fixture on cable news, captivating a lot of the nation as she challenged the current organ donor transplant rules and issued some controversial statements about the Director of Health and Human Services. Their wait is over… for now.

Sarah Murnaghan of Newtown Square, Pa., underwent more than six hours of surgery to receive two lobe transplants, meaning that a pair of adult lungs was cut down to fit her small size, according to a statement from her family, including parents Janet and Francis Murnaghan.

“We are thrilled to share that Sarah is out of surgery,” the statement read. “Her doctors are very pleased with both her progress during the procedure and her prognosis for recovery.”

That indicates that a giant push by Sarah’s parents, which resulted in a lawsuit and a federal court order, actually worked as they’d hoped: to allow their daughter to receive adult lungs based on the severity of her illness instead of existing rules.

The way this case has been handled all around has left me with some rather disturbing feelings. Right up front, though, I will say that I understand – even if I disagree with – the actions of Mr. and Mrs. Murnaghan. If that were my daughter I’d probably be out there looking to shoot somebody with a donor card if I thought it would save her life. But I’m not Sarah’s father and can manage to look at this from a bit more distant perspective.

The entire issue of arranging for and prioritizing donated organs is probably one of the toughest and most heart-wrenching processes in society. On average, 18 people die every day waiting for a donated organ. Each and every one of them has a unique, yet still similar story, and each is a real life on the line. At some point, decisions had to be made as to where to draw certain lines in terms of the acceptable age of donors, probabilities of survival and a variety of other factors. Perhaps the system has room for improvement, and that’s certainly worth looking at, but taking a campaign for a single individual, no matter how sympathetic, to the public airwaves and into the political arena just seems wrong. Everyone feels sorry for Sarah and wants her to do well, but should she have jumped the line in front of how many other patients because her mother was willing to launch a national campaign on network TV and try to shame a federal official into changing the rules to bolster her chances?

Doug Mataconis seemed to be thinking something along similar lines.

I am certainly not faulting Sarah’s parents for the course of action that they took. Their daughter likely would have died in the very near future if she hadn’t gotten a transplant, and seeking to have the under-12 rule repealed via the Court system was the only real option that they had available to them. Any parent in a similar situation would have done the same thing, and it’s understandable to see why. However, Courts can only deal with cases like this on an individual basis. They generally won’t consider the consequences in the future of upsetting the medical ethics apple cart by ordering that one patient be advanced up the list to those who are already on the list or the ones who don’t get as a high a position on the list as they might have otherwise. The result may be good for one person, but it’s going to work to the disadvantage of others, and it’s likely to make it that much harder to run an organ transplant system that presents painfully difficult ethical issues on a daily basis.

Watching a lot of the coverage of this story coming from medical experts, one has to wonder how “qualified” Sarah was for a spot at the front of the line. In terms of being the most gravely ill and in need of immediate care, she certainly would score highly. (The “scoring” system was developed by the United Network for Organ Sharing -UNOS). But it looks like the decisions on donors also include factors such as the probability that the donation may result in a long term benefit. On average, lung transplant recipients reportedly only have a 50% survival rate after five years if they are otherwise in excellent health. Patients with Cystic Fibrosis. such as Sarah, are apparently predisposed to develop new lung problems in the future. Further, children receiving adult lungs have to have them “trimmed” to fit their chest cavity or have only partial lobes of the donated organ implanted. Is that the most efficient use of the organ? I ask this because the rule about a minimum age for children receiving adult lungs had to have come from somewhere.

I’m sure the system never seems fair to those dealing with it and my heart goes out to them. But it’s just as unfair to the thousands of others facing similarly dire straits. What was the reaction of other parents in similar situations who were perhaps not so media savvy or were not willing to air out their case 24/7 in the cable news wars. Sarah’s family did what they felt they had to do, but I’m not sure that a public campaign to jump the line and the intervention of judges and politicians for a particularly telegenic case is the way to go.


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This story has made me ever more fearful of ObamaCare and politics being injected into medical care decision-making.

MPan on June 15, 2013 at 8:36 AM

Maybe she appeared to jump the line because she had been denied access to the line. She could have been in the line in the first place since trimming the lobes is medically possible and she wouldn’t/shouldn’t have been excluded. It was very revealing to the lofo types that the HHS sec has the power of yes/no to the rules over their living or dying. Death Panels anyone?

Kissmygrits on June 15, 2013 at 8:42 AM

Is it fair that celebrities jump the line?

workingclass artist on June 15, 2013 at 8:42 AM

The politics of organ transplants

….you know it will be politics!

KOOLAID2 on June 15, 2013 at 8:43 AM

Sarah’s family did what they felt they had to do, but I’m not sure that a public campaign to jump the line and the intervention of judges and politicians for a particularly telegenic case is the way to go

It’s just a preview of the future.

Curtiss on June 15, 2013 at 8:44 AM

These questions must be answered from a logical, and not an emotional place. The judge saw a dying little girl, and didn’t see everything else (including the other person he likely sentenced to death by ordering the girl to the front of the line).

Its understandable that no-one wants to feel responsible for the death of a little girl, but these rules are written the way that they are to take into account these other factors.

Revenant on June 15, 2013 at 8:47 AM

Why should sick people be the only members of society prohibited from using the courts to attempt to overturn what they see as unjust laws? Certainly the stakes are high for all involved in this case, but that only justifies it more.

Fenris on June 15, 2013 at 8:48 AM

Forget it, Jazz! The kid got the transplant and there is nothing you can do about it.

Further, children receiving adult lungs have to have them “trimmed” to fit their chest cavity or have only partial lobes of the donated organ implanted. Is that the most efficient use of the organ?

How is it not? The goal is to save a person’s life. With either a “trimmed” lung, as you put it, or a full lung, the goal is the same.

Blake on June 15, 2013 at 8:49 AM

There are tissue matching factors to be considered as well. If a perfect tissue match had been found for Sarah in an adult lung, she would have had no access to it. The lungs she recieved may have been implanted to another person in whom the match was questionable or the lungs may have been wasted. She was just granted access to the adult system. A cousin of mine currently needs kidneys is going to have a complete non-match implanted to give him more time. It’s a sad business…

ROCnPhilly on June 15, 2013 at 8:50 AM

Revenant on June 15, 2013 at 8:47 AM

In a perfect world that would be true. In the real world things are messier. People need to push back against the government and things don’t really settle out until after many iterations. If then; the government has way too much power.

Fenris on June 15, 2013 at 8:51 AM

Synthetic organs can’t come fast enough.

rbj on June 15, 2013 at 8:51 AM

Would it be somehow ‘unfair’ if an organ isn’t a compatible match to the first two people in line, but it’s a good match for the third person? What should be done in that case — throw the organ away?

It’s a complicated mess, and to keep a clear conscience I can’t say what Sarah’s parents did was right or wrong. It’s an awful decision to have to make, for the judge, and I’m glad I’m not a judge. Trying to save a life that is in immediate danger is one thing, but I can’t say it should always be done at the risk or expense of another life.

About the best we can do, I think, is take these situations on a case-by-case basis, if an appeal is made to bump someone already in the line.

Liam on June 15, 2013 at 8:51 AM

Sarah’s family did what they felt they had to do, but I’m not sure that a public campaign to jump the line and the intervention of judges and politicians for a particularly telegenic case is the way to go

It’s just a preview of the future.

Curtiss on June 15, 2013 at 8:44 AM

Specifically, when “politically-correct” is substituted for “telegenic”.

Steve Eggleston on June 15, 2013 at 8:52 AM

One thing is for certain – our government shouldn’t be involved in this selection process, especially considering the fact that the ghoulish Sebelius and the demonic Obama lust for the blood of unborn children.

Once again, Mrs. Palin was prescient in her prediction of government Death Panels. With a word and a wave of her hand, Sebelius pointed the way for this little girl proceed to cemetery.

She should not, nor anyone else in government no matter how virtuous, have such power.

Leave the messy, complicated, unfair and often tragic machinations of organ donations to the men and women who graduated from medical school, not to the liars, cheats and thieves that inhabit the nation’s capital.

turfmann on June 15, 2013 at 9:03 AM

Is it better to give a 10 year old the lung than a 50 year old with emphysema? The long term survival rate for CF patients is as good if not better than other lung transplant recipients. I say this as someone whose father died from emphysema from a lifetime of smoking. As much as I would have loved to see my father get a lung transplant to allow him to see his grandson beyond 6 months and the granddaughter he never saw. Given all that I’d still opt for a child before him.

http://www.cff.org/treatments/lungtransplantation/

When is it time for a lung transplant?

When someone with CF develops severe lung disease, the CF care team may discuss the option of lung transplantation with the person. Most CF care teams will begin discussing transplant as an option before it becomes necessary. The doctor can refer the person to a lung transplant center for evaluation.

The transplant center then discusses the overall process of testing and waiting for transplant, as well as the surgery itself and the survival statistics. They will also describe the post-transplant care a person who gets new lungs will have to do to keep them healthy. This requires a lot of responsibility and support. If the person decides he or she wants to be moved forward for a lung transplant, an evaluation is done.

What is involved in the evaluation process?

If a person decides he or she wants to be evaluated for a lung transplant, then one can be done. The person’s health is looked at to find out if a lung transplant is necessary and timely. These tests look at how well the lungs, heart and kidneys work, the types of germs in the lungs and, because of the seriousness of transplantation, the person’s psychological well being.

The transplant center also will evaluate the person’s social support system, including family and friends, and whether professional support services may be needed during transplant. Most of the evaluation is standard, but each center can have some specific requirements. The staff’s decision to accept a person for a transplant is specific to that center.

You can learn more about the evaluation process for a lung transplant by watching the CF Education Webcast “Lung Transplantation: The Evaluation Process.”

How many people with CF have had lung transplants?

Almost 1,700 lung transplants were performed in 2011 in the United States; this number has been steadily rising throughout the years. According to the CF Foundation Patient Registry, nearly 2,800 people with CF have received lung transplants since 1990. In the last 5 years, about 150 to 200 people with CF have received lung transplants per year.

While there is still a shortage of available organs, the number of people who die while waiting for transplant has declined dramatically in recent years. This is due to changes in the system of how it is decided who gets an organ. This is called an allocating system. These changes started in 2005 and are described below.

What are the current success rates and recovery times?

The success of lung transplantation is measured by the average length of survival of the person who got the lungs after the operation. Of people with CF, over 80 percent are alive 1 year after transplantation, and over 50 percent are alive after 5 years. Following surgery, a person may be discharged from the hospital in a few days, week or months, depending on the person’s health and complications.

People with CF generally do well after lung transplantation — often better than people with other lung diseases do.

Once the person has received a lung transplant, does CF “go away”?

Transplanted lungs do not have CF because they come from people who do not have CF. However, after the transplant, the person still has CF in the sinuses, pancreas, intestines, sweat glands and reproductive tract.

The new lungs do not “get” CF, but immunosuppressive drugs may decrease the ability to fight germs like Pseudomonas aeruginosa (Pseudomonas) and Burkholderia cepacia complex (B. cepacia). These germs may stay in the upper airways after a transplant and can infect the new lungs. The risks of infection are highest right after the transplant operation. This is because immunosuppressive drugs are given at the highest doses right after the transplant so the body will not reject the new lungs. These drugs make it hard for the body to fight infections, and this can lead to lung infections.

Sparky on June 15, 2013 at 9:04 AM

You are a registered Republican. You people don’t get transplants. Or medical treatment.

Now pay for your Obamacare insurance.

thgrant on June 15, 2013 at 9:08 AM

There you go, Liberalism works—IF IT SAVES ONLY ONLY ONE LIFE!

Hooray Libiots…

Oh wait, there are unintended consequences…never mind.

hillsoftx on June 15, 2013 at 9:18 AM

I too empathize with the mother, but this entire process ended up being more like a popularity contest or a chapter of The Hunger Games. Let’s vote for who we think deserves a transplant! Where will this end?

Buy Danish on June 15, 2013 at 9:19 AM

Everyone feels sorry for Sarah and wants her to do well, but should she have jumped the line in front of how many other patients because her mother was willing to launch a national campaign on network TV and try to shame a federal official into changing the rules to bolster her chances?

Well she should have already been on top of the list to begin with. It’s not fair for an 80 year old to get a new lung while a 10 year old is left out in the cold.

SoulGlo on June 15, 2013 at 9:29 AM

I don’t think the federal law/regulation that arbitrarily sets the cutoff age at 12 should even exist. When all you squishes get by your squishy feelings on this issue (*cough* *Jazz* *cough* *cough*) you understand how it was government interference in medical decisions that created this problem. Doctors cleared her for an adult lung. Such clearence should get her onto the adult lung list automatically. This should not be up to lawmakers and bureaucrats.

NotCoach on June 15, 2013 at 9:39 AM

I am tired of the use of the term death panels, whether they are government run or run by some other organization. Hard choices have to be made in these cases, someone or some group of people have to make them. Learn to live with that fact.

SC.Charlie on June 15, 2013 at 9:42 AM

Well she should have already been on top of the list to begin with. It’s not fair for an 80 year old to get a new lung while a 10 year old is left out in the cold.

SoulGlo on June 15, 2013 at 9:29 AM

Applying for a position on the IPAB?

Hill60 on June 15, 2013 at 9:43 AM

Sarah was discriminated against first by having adults move ahead of her because she was only 10. She was at a 90 scale for those needing transplants. Was that fair? Having one person decide she was held back in line, HHS was unfair.

Herb on June 15, 2013 at 9:44 AM

The only person that isn’t compensated for the organ is the donor.
That makes the system subject to politics and to corruption. Let the donor sell and be compensated for the organ.

lilium479 on June 15, 2013 at 9:47 AM

SoulGlo on June 15, 2013 at 9:29 AM

I understand and agree. But judging fair? We really are playing God now.

Maybe she appeared to jump the line because she had been denied access to the line. She could have been in the line in the first place since trimming the lobes is medically possible and she wouldn’t/shouldn’t have been excluded. It was very revealing to the lofo types that the HHS sec has the power of yes/no to the rules over their living or dying. Death Panels anyone?

Kissmygrits on June 15, 2013 at 8:42 AM

I’m not too smart on this subject. But if this is all true, kmg has the best comment posted here. And it goes back to what SoulGlo was saying too. If its really possible to size a lung for a younger recipient, who decided in the first place they wouldn’t take advantage of the procedure. Who makes the rules. Who decides what’s fair. Considering the targeting of conservatives by the IRS is it really that far fetched to think they wouldn’t be as biased in this regard?

Am I getting too tin-foily here?

smoothsailing on June 15, 2013 at 9:47 AM

I am tired of the use of the term death panels, whether they are government run or run by some other organization. Hard choices have to be made in these cases, someone or some group of people have to make them. Learn to live with that fact…..SC.Charlie on June 15, 2013 at 9:42 AM

How tired would you be if people like those staffing the IRS are deciding whether you live or die?

Herb on June 15, 2013 at 9:50 AM

I truly don’t understand how you can be against Kathleen Sebelius’ arbitrary age limit on lung transplants, but applaud a judge making exceptions for INDIVIDUALS. It would be quite different if the judge threw out the WHOLE rule based on the arbitrary nature of it, but they didn’t. Instead he made an ARBITRARY ruling for an individual because that individual had the resources to hire a PR company and an attorney and pay the fees to appear in federal court. If the age limit is arbitrary then it should have been completely overturned and the 31 children on the lung transplant list should all feel the benefits of it. Making a ruling for one child, because of politicized heartstrings is as arbitrary as everyone accuses Kathleen Sebelius of being—and it is bad precedent.

melle1228 on June 15, 2013 at 9:50 AM

Good analysis here about the potential for chaos if this stands as precedent. And this:

“If we just ran a single list, we’d end up with a child getting an adult lung, and the lung would have to be cut down,” he said. “That makes the surgery much more complicated and generally not as successful. On the other hand, it would be bizarre if an adult were assigned a lung from a child who was a donor, and you’d have a very small lung for an adult.”

He was critical of the notion that Sarah Murnaghan was being treated unfairly before the judge ordered that she be made eligible for adult lungs.

“I really don’t buy it,” he said. “Adding a child to the adult list, while continuing to keep her as first priority for children, is going to make the system much less efficient.”

“We can understand why every family would want to do everything possible to get an organ for their loved one,” he said. “But if judges intervene into this system, we’re in effect doing an end run around a carefully thought-out and balanced formulation of a policy.”

Buy Danish on June 15, 2013 at 9:51 AM

I too empathize with the mother, but this entire process ended up being more like a popularity contest or a chapter of The Hunger Games. Let’s vote for who we think deserves a transplant! Where will this end?

Buy Danish on June 15, 2013 at 9:19 AM

I absolutely agree. There are 30 other children on the lung transplant list. 6 other just in her region. But because this child had parents who had the resources to hire a PR firm, an attorney and pay federal court costs; she got an exception made. Like I said up top, if the age limit was “abitrary” then it is arbitrary for all children on the list. The ruling should have thrown out the rule not made an exception just for this little girl.

melle1228 on June 15, 2013 at 9:54 AM

You are a registered Republican. You people don’t get transplants. Or medical treatment.

Now pay for your everyone else’s Obamacare insurance.

thgrant on June 15, 2013 at 9:08 AM

Fixed it.

ROCnPhilly on June 15, 2013 at 9:56 AM

I am tired of the use of the term death panels, whether they are government run or run by some other organization. Hard choices have to be made in these cases, someone or some group of people have to make them. Learn to live with that fact.

SC.Charlie on June 15, 2013 at 9:42 AM

I don’t know. We’ve spent a vastly disproportionate sum of money in disease research since the 80s trying to cure a disease that is mostly prevalent in a very small community. Did we make hard choices there or did we let our emotions run off with the hysterics and politics of that group?

smoothsailing on June 15, 2013 at 9:56 AM

Sarah was discriminated against first by having adults move ahead of her because she was only 10. She was at a 90 scale for those needing transplants. Was that fair? Having one person decide she was held back in line, HHS was unfair.

Herb on June 15, 2013 at 9:44 AM

So you support ONE person pushing her to the front of the line in the adult list basically pushing another person out of that list? And everyone keeps talking about her pushing an “80″ year old out. How do we know she didn’t push a 21 year old out with CF?

melle1228 on June 15, 2013 at 9:59 AM

I am tired of the use of the term death panels, whether they are government run or run by some other organization. Hard choices have to be made in these cases, someone or some group of people have to make them. Learn to live with that fact.

SC.Charlie on June 15, 2013 at 9:42 AM

Yeah. And the government is just the authority to make such decisions, right? Heh. We use the term “Death Panel” and will continue to use it because the description fits.

ROCnPhilly on June 15, 2013 at 10:03 AM

So you support ONE person pushing her to the front of the line in the adult list basically pushing another person out of that list? And everyone keeps talking about her pushing an “80″ year old out. How do we know she didn’t push a 21 year old out with CF?

melle1228 on June 15, 2013 at 9:59 AM

Is that how it works? The database only has 1000 rows in it and as one is added, another is dropped?

ROCnPhilly on June 15, 2013 at 10:06 AM

I don’t know. We’ve spent a vastly disproportionate sum of money in disease research since the 80s trying to cure a disease that is mostly prevalent in a very small community. Did we make hard choices there or did we let our emotions run off with the hysterics and politics of that group? – smoothsailing on June 15, 2013 at 9:56 AM

You are talking about AIDS of course. AIDS is and was and is a worldwide transmittable virus. Everyone got emotional and scared about it becoming the new pandemic. At first no one knew how it was transmitted or even how to identify who the carriers were. Did we spend too much money on it? I will let you be the judge. I will say that I don’t want to be put on life support when I am at death’s door. Everyone dies, it is how you live that is important.

SC.Charlie on June 15, 2013 at 10:07 AM

Yeah. And the government is just the authority to make such decisions, right? Heh. We use the term “Death Panel” and will continue to use it because the description fits. – ROCnPhilly on June 15, 2013 at 10:03 AM

It sure fits, but someone has to make the decisions. Do you want to make those tough decisions or just throw a hissy fit at those that are brave enough to make them?

SC.Charlie on June 15, 2013 at 10:10 AM

What has been ignored in all this is the question that ought to have been immediately asked — whose father or mother, sister or brother, daughter or son died so that this little girl could get the lungs that she was not entitled to under the guidelines?

RhymesWithRight on June 15, 2013 at 10:11 AM

SC.Charlie on June 15, 2013 at 10:07 AM

Still vastly disproportionate. Someone judged that group was more deserving than folks suffering from cancer and a long list of other diseases.

And a 10 year old is going to have a hard time making that call of having herself taken off life support.

smoothsailing on June 15, 2013 at 10:20 AM

What has been ignored in all this is the question that ought to have been immediately asked — whose father or mother, sister or brother, daughter or son died so that this little girl could get the lungs that she was not entitled to under the guidelines?

RhymesWithRight on June 15, 2013 at 10:11 AM

Ummm, death panels or something.

Pablo Honey on June 15, 2013 at 10:20 AM

Maybe she appeared to jump the line because she had been denied access to the line.

THIS^^

The reason why she was put on the list was a temporary order to keep her from dying from the judge as her parents brought a case challenging the law. The reason why she’s at the front of the list has to do with how ill she is, based upon a ranking (that everyone else on the list also has).

As someone that worked in healthcare and at times was one of the people discussing organ donation with families, the REAL issue is not the aforementioned, but getting people to donate organs in the first place.

It’s a very difficult thing to approach a grieving family and ask them to do this. And with emotions running high, sometimes the idea of it is much more than a family can bear. Which is why we all should consider the idea of organ donation and then let our families know about our desires, long before anything ever happens.

Just a few thoughts on this case in particular..if a set of lungs usually lasts five years, what difference does it make if it’s put in a 10 year old or in an 80 year old? It’s going to last approximately the same time. The fact that lungs can be transplanted at all is a massive boon for those who need them, who formerly all would have merely died.

As to her having CF, the fact that she’s a child and probably has decent health habits imposed on her by her parents, her odds of successfully living as a healthy person is probably much higher than a lot of adults that I’ve seen with rejected organs due to non-compliance with health regimes, the same sort of behaviors that got them to end up needing an organ transplant in the first place (eg. seeing someone with a history of drug abuse get repeated kidneys). In other words, not every patient needing a transplant is a victim of circumstance. Sometimes they’re a victim of themselves.

This case shows that we need to revamp the policies and laws surrounding organ transplant. And if you’ve not considered doing this yourself, please do so.

GeeWhiz on June 15, 2013 at 10:25 AM

I am somewhat surprised that more people here aren’t advocating for a free-market solution–that is, allowing those who are willing to work harder than others an opportunity to reap the rewards. It appears that is, to some degree, what happened in this particular case.

I understand that there are many complexities involved with organ donation, including availability, location, urgency, suitability, emotion, and others. I would agree that there should be an education process and perhaps some objective scientific direction required as part of the transplant process, but allowing the availability of organs to be entirely controlled by a bureaucracy rather than mostly by the free market is quite socialist, and creates the same types of problems as central control of any other resource.

JKG

jgoodish on June 15, 2013 at 10:25 AM

Still don’t understand the dissonance here…

Lets rail against a government official not letting her have a transplant but cheer another government official for giving her preferential treatment.

catmman on June 15, 2013 at 10:32 AM

Reading these comments, you would think you’re on DailyKos or something. I have never seen a better case of “emotion vs. reason” than these comments. Jazz is exactly right. From the moment I heard about this issue, I thought it was ridiculous. If you “conservatives” truly want to start making medical decisions based on emotional appeal, leave your conservative cards at the door and join the far left. Good riddance.

NoStoppingUs on June 15, 2013 at 10:34 AM

On this particular issue -and I don’t claim to know anything other than what has been reported about it- the age restrictions and the claims of ‘if she lives, someone else dies’ don’t seem logical.

One, there are few children under 12 needing lung transplants. Two, while there are many more over 12 needing lung transplant, there doesn’t seem to be nearly the shortage of organs for the 12 and up group. So by Sarah taking a pair of adult lungs, it’s likely that that slot was quickly replenished and even though someone 12 and up didn’t get that specific pair of organs, their wait to another pair was likely brief.

Additionally, how many of these adult lung transplant patients are 80 or older? How many need transplants due to lung cancer from 60 years of smoking? The question of priority, it seems to me, should be viability and prognosis, not age. Hopefully this will be hashed out.

This is Obamacare playing out in microcosm, before it’s fully implemented. People better get used to it.

BKeyser on June 15, 2013 at 10:40 AM

The way this case has been handled all around has left me with some rather disturbing feelings. Right up front, though, I will say that I understand – even if I disagree with – the actions of Mr. and Mrs. Murnaghan. If that were my daughter I’d probably be out there looking to shoot somebody with a donor card if I thought it would save her life. But I’m not Sarah’s father and can manage to look at this from a bit more distant perspective.

It leaves me with no disturbing feelings other than the fact that the previous status quo was to deny children the chance to stand in line, using the same prioritization with respect to seriousness of illness and tissue matching, for a lung.

The new status quo, in place for two children at present, does not send them to the front of the line, but instead obligates medical professionals to evaluate them using the same criteria they would evaluate adults.

Now, admittedly, the children get to be in two lines simultaneously — given that medical technology has advanced over the past decade to the point where they may receive a “cut down” adult lung or a child’s lung — as opposed to adults, who are only able to obtain adult lungs — but this isn’t as bad as it might seem to the adults, because the ratio of adult lungs to children’s lungs is very high.

The previous regime discriminated against children, and was the result of decisions made when the technology of transplantation was much less mature.

I am somewhat surprised that more people here aren’t advocating for a free-market solution–that is, allowing those who are willing to work harder than others an opportunity to reap the rewards. It appears that is, to some degree, what happened in this particular case.

The end result of a totally free market is that which the Chinese have with respect to organ donors and transplants. I’d rather that the transplant “industry” remain totally voluntary and without pay. The moment we move to a pay-for-organs system, we invite harvesting, euthanasia, disease, etc, just as we had with the “pay for blood” industry just a few years ago.

My daughter was a preemie, and several of her peers at the same hospital died as a result of transfusions of AIDs-infected blood bought on the open market. A big part of the reason that no longer occurs is because blood donations are now totally voluntary and those who volunteer to have needles stuck into them are not diseased individuals driven by monetary gain to offer shoddy product, so to speak.

No thank you.

unclesmrgol on June 15, 2013 at 10:45 AM

I too empathize with the mother, but this entire process ended up being more like a popularity contest or a chapter of The Hunger Games. Let’s vote for who we think deserves a transplant! Where will this end?

Buy Danish on June 15, 2013 at 9:19 AM

Reality TV show. Call 555-ORGN and vote for your favorite now! Calls will be billed at $3/minute, with all proceeds going towards the funeral costs of the less-telegenic non-winners.

s_dog on June 15, 2013 at 10:45 AM

A few years back, someone played politics and got an illegal girl a jump in line for a heart and lung transplant. In their haste to get her to the head of the line someone neglected to notice that she was the wrong blood type for the donor heart. After the first surgery, they had to rush to get her a second heart, but the new transplant didn’t fix the damage cause and the girl died and probably someone else who needed the first heart and lung set.

LoganSix on June 15, 2013 at 10:54 AM

I’d rather that the transplant “industry” remain totally voluntary and without pay.

There’s heaps of money in the organ donation industry: http://losangeles.cbslocal.com/2011/11/11/investigation-tissue-and-organ-donations-can-save-a-life-but-at-what-cost/

The only ones not making money out of it are the donors themselves.

s_dog on June 15, 2013 at 10:54 AM

The head of “One Legacy” one of the so-called “non-profit” Big Organ corps, made over $660,000 in 2009.

s_dog on June 15, 2013 at 10:58 AM

Is that how it works? The database only has 1000 rows in it and as one is added, another is dropped?

ROCnPhilly on June 15, 2013 at 10:06 AM

Nobody is dropped, but when she was added she was given preference over someone else; ALL who have a limited time to live.

The same people bi+ching about ONE person in the government making a life or death decision are applauding a judge(ONE Person in the government) making a life or death decision. The ramifications of the judge’s decision didn’t just effect this little girl. It had far reaching ramifications. The precedent of a judge moving someone on a transplant list is chilling. Just because you “applaud” sticking it the Obama administration and Obamacare doesn’t mean you should applaud judicial overreach. If the judge thought that the rule was arbitrary than the correct decision was to throw it out for ALL the children on the list. Instead he made an exception for ONE child because that child had parents who had the money to hire a PR firm, attorney and pay court costs.

melle1228 on June 15, 2013 at 10:59 AM

How long before Sebelius gets a court order to Repo the lungs?

BigWyo on June 15, 2013 at 11:00 AM

One, there are few children under 12 needing lung transplants.

There are 31, including 6 in Sarah’s region..

Additionally, how many of these adult lung transplant patients are 80 or older? How many need transplants due to lung cancer from 60 years of smoking?

How many are there that are cystic fibrosis sufferers over the age of 12? If someone with cystic fibrosis UNDER the age of 12 needs a lung transplant; then it stand to reason that there would be some on the transplant list OVER 12 that have cystic fibrosis.

melle1228 on June 15, 2013 at 11:01 AM

LoganSix on June 15, 2013 at 10:54 AM

A 17 year old who was already waiting 3 years on the adult list is politics how? I read your article and only see that a mistake was made in matching blood types, not that she was moved up the list.

NotCoach on June 15, 2013 at 11:07 AM

melle1228 on June 15, 2013 at 11:01 AM

If doctors clear her for an adult lung why does age matter? That’s the problem here. Not that she was placed on the adult list, but that federal bureaucracy prevented her from being placed on the adult list.

NotCoach on June 15, 2013 at 11:09 AM

I’m carrying an organ donor card, even though my family worries that fact would errrr… hurry along natural processes in the even my life should be ended, and my hope is that any organs taken from my body will be put to their highest and best use. In other words, the recipients should have the statistically best chances of making long and effective use of them.

Sadly, this group of ideal recipients may well not include little Sarah, and the saddest fact about this case is that some person who statistically fits the best group better than she may instead die for lack of the lungs she received. Doctors I know say it more strongly, and claim that someone who has a better score will die as a result of this outcome. I myself know no real facts about it, and I would have probably taken very similar actions to the family in this instance, so I am not throwing stones here, but the other side of the argument should be carefully considered before any of us reach a conclusion.

MTF on June 15, 2013 at 11:10 AM

Good Guys 1
Death Panels 0

Khun Joe on June 15, 2013 at 11:24 AM

Good Guys 1
Death Panels 0

Whoever missed out on the lungs in question, because Little Sarah was cuter and had a better PR team, might beg to differ.

s_dog on June 15, 2013 at 11:27 AM

A 17 year old who was already waiting 3 years on the adult list is politics how? I read your article and only see that a mistake was made in matching blood types, not that she was moved up the list.

NotCoach on June 15, 2013 at 11:07 AM

There are a ton of articles on the story.

It was a 17 year old who was the size of a child, so she got child donor parts. And as stated, someone used their pull to give her a heart and lung set that didn’t match her blood type and then they had to push her up to the top of the list again to get replacements after she was already brain dead.

LoganSix on June 15, 2013 at 11:28 AM

My boyfriend died of CF a few years ago. During one trip with him to the hospital for a pow-wow with his doctor to discuss getting on the transplant list, she had said available lungs go out on a first come, first serve basis…basically, take a number and wait to be called.

I wouldn’t wish CF on anybody. It’s a horrible thing for those who have it to deal with. And heart-breaking for family, friends, and loved ones. My prayers have been with this little girl and her family since it first made headlines. Her parents are doing what any loving parents should…doing everything necessary that might help save her life.

JetBoy on June 15, 2013 at 11:30 AM

And as stated…

LoganSix on June 15, 2013 at 11:28 AM

By you.

NotCoach on June 15, 2013 at 11:31 AM

You have to wonder how “fair” future transplants will be if we start adding the “which patient tugs at the heartstrings the most? which family does the best job of using the media? which patient has the best/most victim cards to play?

katiejane on June 15, 2013 at 11:46 AM

[Sarcasm on]
I am so glad all those properly thinking libs let us know Pres. Bush’s call for research into animal/human hybrids was silly and should be rightfully laughed at. I mean it’s not like the most obvious thing to do with that research would be to take an animal like a pig, genetically modify its genome to make it compatible with a human(most likely by changing the expressed surface proteins to use the human version instead), then use the organs from said animal to do transplants. (Good thing they let us know that this would of course not work even thought there’s no research to say if doing that would or would not work. But they’re geniuses so they don’t need to do the research or experiments to see what would happen, they support science btw.)
[sarcasm off]

Dave_d on June 15, 2013 at 11:46 AM

How many are there that are cystic fibrosis sufferers over the age of 12? If someone with cystic fibrosis UNDER the age of 12 needs a lung transplant; then it stand to reason that there would be some on the transplant list OVER 12 that have cystic fibrosis.

melle1228 on June 15, 2013 at 11:01 AM

Yeah. I think you emphasized my point on both fronts.

BKeyser on June 15, 2013 at 11:49 AM

Further, children receiving adult lungs have to have them “trimmed” to fit their chest cavity or have only partial lobes of the donated organ implanted. Is that the most efficient use of the organ? I ask this because the rule about a minimum age for children receiving adult lungs had to have come from somewhere.

Exactly. And they’re adult donor lungs, so there is no reason to think they will grow as the recipient grows. So in addition to having the problem of lung transplants only lasting 5 years anyway, it is fairly likely that this will last an even shorter period of time because of the probable failure of the donor organ to adjust to her size as she grows. But what a great media story-She got a transplant! Pay no attention to the problem that in the 4/5 chance she makes in through the first year, best case is that she’ll get to die at 15 instead of 10

talkingpoints on June 15, 2013 at 12:12 PM

It sure fits, but someone has to make the decisions. Do you want to make those tough decisions or just throw a hissy fit at those that are brave enough to make them?

SC.Charlie on June 15, 2013 at 10:10 AM

Schiavo case inverted. I swear.

MelonCollie on June 15, 2013 at 12:17 PM

Not that she was placed on the adult list, but that federal bureaucracy prevented her from being placed on the adult list.

NotCoach on June 15, 2013 at 11:09 AM

No, medical policy prevented children under 12 from being placed on the adult waiting list because transplant survival is better if the size is compatible.

The family was asking the government to overrule medical policy and Sibelius declined to do so, until a judge with likely no medical training forced UNOS to list her as an adult which will probably result in a poorer outcome than if the lungs had gone to someone of an appropriate size.

talkingpoints on June 15, 2013 at 12:17 PM

No, medical policy prevented children under 12 from being placed on the adult waiting list because transplant survival is better if the size is compatible.

The family was asking the government to overrule medical policy and Sibelius declined to do so, until a judge with likely no medical training forced UNOS to list her as an adult which will probably result in a poorer outcome than if the lungs had gone to someone of an appropriate size.

talkingpoints on June 15, 2013 at 12:17 PM

No, it’s a federal rule.

NotCoach on June 15, 2013 at 12:24 PM

Additionally, how many of these adult lung transplant patients are 80 or older? How many need transplants due to lung cancer from 60 years of smoking?

Cancer other than non-melanotic skin cancer is a contraindication to solid organ transplants (kidney, lungs, heart, etc) because the immunosuppressives given for the transplant allow the cancer to grow.
The usual age cutoff for organ transplants is 65.

talkingpoints on June 15, 2013 at 12:25 PM

I believe the federal rule is to follow UNOS guidelines.

talkingpoints on June 15, 2013 at 12:27 PM

Why is the obviously-corrupt federal government involved at all in making decisions on who gets donated organs?

This makes me less likely to sign my driver’s license donor backside. If some Lois-Lerner democratic party ghoul will decide how to deal out my organs, and likely give them to the REB’s biggest political contributors, I think I’ll bow out.

In fact if they see that I’m a Republican will they wait until I’m dead?

slickwillie2001 on June 15, 2013 at 12:56 PM

Jazz, I like your writing. But I swear, you’re trying so hard to be open-minded that your brains are falling out.

SagebrushPuppet on June 15, 2013 at 1:20 PM

The ruling should have thrown out the rule not made an exception just for this little girl.

melle1228 on June 15, 2013 at 9:54 AM

An arbitrary age limit based on best practices from a decade ago is absurd. Placement on transplant lists should be based on need and the best chance of survival for each individual.

Wendya on June 15, 2013 at 1:34 PM

Which is it, need or best chance for survival? Should it be either one? Neither?

I think we’re devolving into semantics here.

If you’re on the transplant list to begin with, doesn’t that satisfy the ‘need’ requirement?

And survivability? Isn’t that subjective?

If being in the list isn’t simply subject to first come, first served then isn’t someone enforcing arbitrary rules based in subjective criteria?

catmman on June 15, 2013 at 2:40 PM

Everyone feels sorry for Sarah and wants her to do well, but should she have jumped the line in front of how many other patients because her mother was willing to launch a national campaign on network TV and try to shame a federal official into changing the rules to bolster her chances?

This is what I’ve been saying all along, and for it I’ve been vilified for “defending Sebelius” called “evil incarnate” by a so-called conservative.

JannyMae on June 15, 2013 at 3:09 PM

This story has made me ever more fearful of ObamaCare and politics being injected into medical care decision-making.

MPan on June 15, 2013 at 8:36 AM

That is exactly what the promoters of changing the criteria for little Sarah were advocating. Sebelius declined to intervene in the situation, and was vilified as being “uncaring.” The judge was, IMO, out of line in intervening in this decision that Jazz rightly points out is (and SHOULD BE) in the hands of the board that decides what happens with donor organs.

Sarah’s parents are the ones who injected “politics” into this, and I’m disgusted to see so many normally sane conservatives jump on the emotional bandwagon and go nuts, believing that Sebelius is a “bad guy” in this situation. Transplant organs don’t grown on trees. They are scarce in relation to how many people can benefit them. There is a set of criteria in place for a GOOD reason. Some people will die, and that is the reality.

JannyMae on June 15, 2013 at 3:13 PM

NoStoppingUs on June 15, 2013 at 10:34 AM

Again, its a good thing your community wasn’t told that since the eighties. Sorry. But that sentiment coming from your community is the ultimate and gold standard of hypocrisy.

“We’re losing an entire generation. Give now. Support research. Screw Cancer, Heart Disease, Lung Disease, Sickle Cell Anemia, Muscular Dystrophy, on and on and on.”

Not hard to figure out who’ll be getting the short end of the stick with liberal extremists like you in charge.

smoothsailing on June 15, 2013 at 3:15 PM

Which is it, need or best chance for survival? Should it be either one? Neither?

I think we’re devolving into semantics here.

If you’re on the transplant list to begin with, doesn’t that satisfy the ‘need’ requirement?

And survivability? Isn’t that subjective?

If being in the list isn’t simply subject to first come, first served then isn’t someone enforcing arbitrary rules based in subjective criteria?

catmman on June 15, 2013 at 2:40 PM

It’s not a simple thing, that’s for sure. There are multiple factors, and it isn’t just “I need an organ.” Why would you want to transplant an organ into a patient that will probably only have his life extended for a month, when you could transplant one into someone who will live another 25 years? So, yes, there are arbitrary rules, but they make an effort to have them based on OBJECTIVE criteria.

JannyMae on June 15, 2013 at 3:16 PM

Good Guys 1
Death Panels 0

Khun Joe on June 15, 2013 at 11:24 AM

Well, except for the poor sap that will probably die now, after being bumped down the waiting list in favor of Sarah.

But it’s “for the children!!!!!!!!!!!!!!!!”

JannyMae on June 15, 2013 at 3:18 PM

But that’s just my point.

A person who is liable to live for only a month or so isn’t going to be on the transplant list to begin with and there is no way any medical professional could predict that a patient would live for 25 years.

There is too much subjectivity in medical patients to be truly objective, which is why there is a board and rules.

We’re striving for a perfection that only exists in the minds of Libtards, frankly.

It isn’t always fair. Isn’t that what many of us always jump on Libtards about in their incessant yearning for Utopia?

Fairness is a pipe dream. You can’t legislate it. You can only try to be as fair as possible, but someone is always going to cry about.

catmman on June 15, 2013 at 3:34 PM

Well, except for the poor sap that will probably die now, after being bumped down the waiting list in favor of Sarah.

But it’s “for the children!!!!!!!!!!!!!!!!”

JannyMae on June 15, 2013 at 3:18 PM

Why shouldn’t she be on the list? Why do you support some bureaucrat deciding life and death with an arbitrary cut-off rule? She wasn’t given a lung by the judge, she was just placed on the same list as everyone else. The sad little bureaucrat got overruled and we are supposed to be outraged about this? It should be a medical decision not a bureaucratic one.

sharrukin on June 15, 2013 at 3:51 PM

Sarah was discriminated against first by having adults move ahead of her because she was only 10. She was at a 90 scale for those needing transplants. Was that fair? Having one person decide she was held back in line, HHS was unfair.

Herb on June 15, 2013 at 9:44 AM

So work to change the system. Don’t let the loudest, most telegenic, richest, politically astute or celebrity/politician/politician’s family get the best.

Is this family going to continue to work to change the system or are they going to take their lung and go home?

One day all of us are not going to fit some preconceived “list” or not be friends with the “right” people.

We saw the future. Best get your make up out and start cultivating the “right” people.

kim roy on June 15, 2013 at 4:02 PM

that Jazz rightly points out is (and SHOULD BE) in the hands of the board that decides what happens with donor organs.
JannyMae on June 15, 2013 at 3:13 PM

I work in a hospital. There are a LOT of things that go into any transplant including health, viability, psychology, behavior, etc.

It isn’t an easy decision to put people on a list and think of the many who do not even get to the list.

There are a number of doctors involved who go through the patients to see which will be the best candidates with the best chance of success. They look at the entire patient, behavior and history and attempt to predict the future.

Very very difficult. Leaving it to a bureaucrat and/or judge is just asking for trouble.

kim roy on June 15, 2013 at 4:09 PM

Rule #1 should be that no one should complain about the current system, if you haven’t designated yourself as a possible donor.

SC.Charlie on June 15, 2013 at 5:37 PM

Sparky on June 15, 2013 at 9:04 AM

Thanks for all the information. It’s good to know something about the process.

Rule #1 should be that no one should complain about the current system, if you haven’t designated yourself as a possible donor.

SC.Charlie on June 15, 2013 at 5:37 PM

I was surprised to see how low the numbers are, for a nation of several millions of people.

Almost 1,700 lung transplants were performed in 2011 in the United States; this number has been steadily rising throughout the years. According to the CF Foundation Patient Registry, nearly 2,800 people with CF have received lung transplants since 1990. In the last 5 years, about 150 to 200 people with CF have received lung transplants per year.

you understand how it was government interference in medical decisions that created this problem. Doctors cleared her for an adult lung. Such clearence should get her onto the adult lung list automatically. This should not be up to lawmakers and bureaucrats.

NotCoach on June 15, 2013 at 9:39 AM

When I first read the story, my impression was that the parents just wanted to get her on that list, and that is the “rule” Sebelius refused to waive, despite the doctor’s okay.

Like I said up top, if the age limit was “abitrary” then it is arbitrary for all children on the list. The ruling should have thrown out the rule not made an exception just for this little girl.

melle1228 on June 15, 2013 at 9:54 AM

Indeed.

I too empathize with the mother, but this entire process ended up being more like a popularity contest or a chapter of The Hunger Games. Let’s vote for who we think deserves a transplant! Where will this end?

Buy Danish on June 15, 2013 at 9:19 AM

Reality TV show. Call 555-ORGN and vote for your favorite now! Calls will be billed at $3/minute, with all proceeds going towards the funeral costs of the less-telegenic non-winners.

s_dog on June 15, 2013 at 10:45 AM

Surprised no one is running one now.

The previous regime discriminated against children, and was the result of decisions made when the technology of transplantation was much less mature.

The end result of a totally free market is that which the Chinese have with respect to organ donors and transplants. I’d rather that the transplant “industry” remain totally voluntary and without pay. The moment we move to a pay-for-organs system, we invite harvesting, euthanasia, disease, etc, just as we had with the “pay for blood” industry just a few years ago.

unclesmrgol on June 15, 2013 at 10:45 AM

The only ones not making money out of it are the donors themselves.

s_dog on June 15, 2013 at 10:54 AM

Good to know; not-so-good we can’t really do much about it.
Maybe a little more “transparency” would help.

JetBoy on June 15, 2013 at 11:30 AM

Condolences, although very much after the fact, are still offered.
Having to care for a loved one through any serious disease is a daunting responsibility, and those sufferers who do have someone to stand by them are truly blessed.

So work to change the system. Don’t let the loudest, most telegenic, richest, politically astute or celebrity/politician/politician’s family get the best.

Is this family going to continue to work to change the system or are they going to take their lung and go home?

kim roy on June 15, 2013 at 4:02 PM

Publicity about problems in a system are the necessary first step toward building a constituency for change. Look how many people now know far more about the donor-recipient process than ever did before; look how we (a very small microset of the public) are discussing the important issues. And, yes, the momentum to change has to continue, but think about all of the changes made in drunk driving laws by MADD (started by one bereaved mother), or the improvements in handling missing-child cases, and many others — most of them started by one family shining light on the problem, and then enduring through exhausting setbacks and opposition until their efforts finally made a difference.

Even if this one family doesn’t continue to work to change the system, they may have inspired others to try.

PS Government regulations are always behind the curve of science and medical advances, when they are not actively ignoring them for political reasons. See DDT and AGW among others.

AesopFan on June 15, 2013 at 8:56 PM

Why not let people sell their organs? The free market has saved many lives and is the answer to most of our problems….

The most applicable case is with kidneys…

nazo311 on June 15, 2013 at 10:34 PM

Rule #1 should be that no one should complain about the current system, if you haven’t designated yourself as a possible donor.

SC.Charlie on June 15, 2013 at 5:37 PM

I was surprised to see how low the numbers are, for a nation of several millions of people.

AesopFan on June 15, 2013 at 8:56 PM

It’s always been an uphill battle to get organ donors, and liberal-induced selfishness has not only made that harder but disqualified a significant number of potential donors. You can’t use the organs of Larry Libloon who got AIDS from one of his thirty girlfriends or his buddy who turned his body into a Superfund site with illicit drugs.

MelonCollie on June 15, 2013 at 10:58 PM

Maybe she appeared to jump the line because she had been denied access to the line. She could have been in the line in the first place since trimming the lobes is medically possible and she wouldn’t/shouldn’t have been excluded. It was very revealing to the lofo types that the HHS sec has the power of yes/no to the rules over their living or dying. Death Panels anyone?

Kissmygrits on June 15, 2013 at 8:42 AM

Maybe she appeared to jump the line because she had been denied access to the line.

And that is the Crux of the whole thing in a Nutshell!

The Denial of Access was due to a rule made arbitrarily stemming from a lack of data at the time the ‘rule’ was made.

Children’s Tables are fine for Thanksgiving – they should never exist for organ transplants.

jaydee_007 on June 16, 2013 at 2:39 AM

Rule #1 should be that no one should complain about the current system, if you haven’t designated yourself as a possible donor.

SC.Charlie on June 15, 2013 at 5:37 PM

I was surprised to see how low the numbers are, for a nation of several millions of people.

AesopFan on June 15, 2013 at 8:56 PM

It’s always been an uphill battle to get organ donors, and liberal-induced selfishness has not only made that harder but disqualified a significant number of potential donors. You can’t use the organs of Larry Libloon who got AIDS from one of his thirty girlfriends or his buddy who turned his body into a Superfund site with illicit drugs.

MelonCollie on June 15, 2013 at 10:58 PM

Well maybe people would be MORE willing to donate and be involved were it not for stories like these…

http://latterepublic1.blogspot.com/2007/12/new-twist-on-washington-organ-donations.html

http://www.nypost.com/p/news/local/organ_ghouls_of_doom_suit_LxCZMP5uRGgI6yn3ywMN9J

jaydee_007 on June 16, 2013 at 2:44 AM

Jazz Shaw

“… my heart goes out to them.”

Wrong organ.

Dr. Charles G. Waugh on June 16, 2013 at 3:20 AM

So who died because of these self-centered a-holes? I wish we had a name because that person is out there. I’d like the media to cover that family.

rock the casbah on June 16, 2013 at 7:48 AM

I don’t think the federal law/regulation that arbitrarily sets the cutoff age at 12 should even exist. When all you squishes get by your squishy feelings on this issue (*cough* *Jazz* *cough* *cough*) you understand how it was government interference in medical decisions that created this problem. Doctors cleared her for an adult lung. Such clearence should get her onto the adult lung list automatically. This should not be up to lawmakers and bureaucrats.

NotCoach on June 15, 2013 at 9:39 AM

Amen!

TXJenny on June 16, 2013 at 8:29 AM

I’ve been on the UNOS list for four years waiting for a kidney. It chaps me when some celebrity jumps the list by making a personal appeal, but it also burns me up when some regular person finds a living donor by taking out billboard ads claiming they are dying when they’ve never even been on dialysis. The public needs to donate organs and stay out of the organ debate. Let the doctors determine who has the need and who is most likely to benefit. They know what they are doing? As for all the line jumpers, there’s a special place in hell for you people.

fleiter on June 16, 2013 at 9:32 AM

Rule #1 should be that no one should complain about the current system, if you haven’t designated yourself as a possible donor.
SC.Charlie on June 15, 2013 at 5:37 PM

I’m listed as a donor, something I hope not to do for a very long time. I do wonder though if my organs will even be acceptable. They won’t take my blood anymore because I lived in England for 2 years from 1979-1981, mad cow disease and all that. They can’t test for it for blood donation, I could be a carrier but don’t know. Can they test for it before they yank out my heart or lungs and put them in someone else? Is the fact that I’ve lived 32 years since I left England with no symptoms enough to say, hey better to have a new heart and take a chance on life than to turn down the organ and die in a week.

With respect to Sarah’s parents fighting to change the system, isn’t it quite enough what they need to do on a daily basis with their daughter? I’m impressed when people can take on the fight to change something while dealing with the challenges of living with a chronic illness or being the caretaker for someone with one but not everyone has the energy after dealing with life to take that one.

Sparky on June 16, 2013 at 9:39 AM

So who died because of these self-centered a-holes? I wish we had a name because that person is out there. I’d like the media to cover that family.

rock the casbah on June 16, 2013 at 7:48 AM

Self centered? The powers that be don’t seem to want to have these issues discussed. Period.

fleiter on June 16, 2013 at 9:32 AM

Anyone familiar with US politics knows that squeaking wheels get grease.

A guess is that the whole system just wanted this case to vanish since emotions run high and rationing anything gets Americans very upset. I was very popular during the Obamacare debate by saying that we ration health care now.

My theory of using illegals as organ donors made me widely loved, also. Why can’t they give a kidney, eye or lung to bring themselves and another 50 future Democratic voters into the country?

Or just start doing a China and watch the self deportations increase.

IlikedAUH2O on June 16, 2013 at 12:26 PM

If UNOS allocated organs first to registered organ donors, more people would sign up to donate and fewer people would die waiting. If you want your organs to go to other registered organ donors, you can join LifeSharers at http://www.lifesharers.org. Membership is free, there is no age limit, parents can enroll their minor children, and no one is excluded due to any pre-existing medical condition.

daveundis on June 16, 2013 at 2:21 PM

Rule #1 should be that no one should complain about the current system, if you haven’t designated yourself as a possible donor.
SC.Charlie on June 15, 2013 at 5:37 PM

Been one since I got my learner’s permit.

Should the unthinkable happen, everything will be worm food anyway, might as well parts me out to maybe save someone else’s life.

MelonCollie on June 16, 2013 at 8:28 PM

So who died because of these self-centered a-holes? I wish we had a name because that person is out there. I’d like the media to cover that family.

rock the casbah on June 16, 2013 at 7:48 AM

What makes you so certain anyone did?

jaydee_007 on June 16, 2013 at 11:20 PM

sure hope mom & dad sleep well knowing that they are responsible for the pain and loss that they have inflected upon A FAMILY that was silly enough to play by the rules.

roflmmfao

donabernathy on June 17, 2013 at 1:29 AM

sure hope mom & dad sleep well knowing that they are responsible for the pain and loss that they have inflected upon A FAMILY that was silly enough to play by the rules.

roflmmfao

donabernathy on June 17, 2013 at 1:29 AM

Again, assuming facts not in evidence.

The rules you are talking about are Arbitrary and not based on Medical Data, but on Lawyer’s Split The Difference!

For Every 1 juvenile lung transplant available there are 174 adult lungs available.

The Girl’s rightful place in line was number 1 because she was critical with only 3 weeks to live, we don’t know where number 2 was and if Number 2 even died because there are possibly more Adult Lung Donor’s available.

Many times Children have died while the Top Spot in the Adult Line was a person with several months to live and multiple donors were found for 2, 3, 4, and 5 in line.

So you are making accusations based on what you think, but do not know for a fact.

In other words, shut your pie hole until you know the facts.

jaydee_007 on June 17, 2013 at 2:22 AM