10 year old girl denied transplant lung..to young by two yrs

[billisonboard]

Jun 13, 2013 21:34:47 GMT -5 Value Buy said:

...
If the child's life would be extended five to ten years, I vote, yes.

Remember that when the lungs are placed in one person, they are not placed in all the others who are in need of them. If those same lungs would extend a mother of three young children life by thirty to forty years and she would die without them, would you still vote yes giving them to the child and have her die?

[Value Buy]

Jun 13, 2013 21:40:06 GMT -5 billisonboard said:

Jun 13, 2013 21:34:47 GMT -5 Value Buy said:

...
If the child's life would be extended five to ten years, I vote, yes.

Remember that when the lungs are placed in one person, they are not placed in all the others who are in need of them. If those same lungs would extend a mother of three young children life by thirty to forty years and she would die without them, would you still vote yes giving them to the child and have her die?

I do not think I can honestly make the decision, of who "deserves" that lung, or heart, kidney, etc, but we do put hearts in old people at the expense of someone without insurance options, etc.
Is that fair?
Myself, I do not want the responsibility of making that particular decision, but I do not want someone zeroed out of it, because they may not live another thirty years, either.
This is simply equal opportunity at it's core, is it not? The child did not do something to deserve this role in life, but, she does deserve equal opportunity for survival.
Who knows, there might be a cure in ten years for her condition.
Remember Ryan White?
If only he had lived another five to ten years, that child probably would have survived aids, as treatment became successful.
I do know I do not want to make the decision to send a child to the grave, based on her "early age".

[billisonboard]

Jun 13, 2013 21:56:33 GMT -5 Value Buy said:

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Myself, I do not want the responsibility of making that particular decision, ...

Sorry. Your "I vote, yes" for some reason suggested to me that you did "want (at least partial) responsibility for making that particular decision."

[Deleted]

Jun 13, 2013 21:40:06 GMT -5 billisonboard said:

Jun 13, 2013 21:34:47 GMT -5 Value Buy said:

...
If the child's life would be extended five to ten years, I vote, yes.

Remember that when the lungs are placed in one person, they are not placed in all the others who are in need of them. If those same lungs would extend a mother of three young children life by thirty to forty years and she would die without them, would you still vote yes giving them to the child and have her die?

Except that your fictional "mother of three" most likely wouldn't survive 30 or 40 years with the new lungs. Survival rates for lung transplants are much lower than other organs. The airways start to degrade and doctors haven't figured out how to slow to stop the process. The 10 year survival rate for a heart transplant is around 55% (depending on which study you look at). Lung transplant at 10 years is about 30% (or less). The 5 year survival rates for someone with CF ("over 50%") are actually not that much lower than the rates for all lung transplants (55%). I couldn't find data for survival at 10 years with CF.

My personal belief is that these decisions need to be made by doctors using medical data. It is almost impossible to predict a transplant outcome, even when everything is as close to perfect as possible. Patients die on the operating table or reject the organ every day.

[Deleted]

It's troubling that those with the means to pursue a court case may be able to get organs faster than those without.

Transplant lists, whole terribly painful, have been developed my medical ethicists, doctors and others intimately aware of the issues involved.

[Jaguar]

It's sort of whomever screams the most and loudest gets the prize, which to me sucks completely.

[thyme4change]

I really, really hope that the lungs she got were on the merit of medical decisions, not fear of backlash from the media.  I really, really hope that is true.  I have to tell myself it is.  I have to believe that CNN did not bully the transplant board by lazy, emotion based pseudo-journalism.  I have accepted a lot of indecent things about the world, but I am not ready to accept that this girl got lungs that should have gone to another because they called the press.

[Deleted]

Jun 14, 2013 12:06:24 GMT -5 thyme4change said:

I really, really hope that the lungs she got were on the merit of medical decisions, not fear of backlash from the media.  I really, really hope that is true.  I have to tell myself it is.  I have to believe that CNN did not bully the transplant board by lazy, emotion based pseudo-journalism.  I have accepted a lot of indecent things about the world, but I am not ready to accept that this girl got lungs that should have gone to another because they called the press.

There is no "board" for deciding who gets which donated organs. When a donor dies, the transplant coordinator at that hospital access the UNOS computer system and enters all the data and information for matching. The computer matches the organs to recipients and spits out a ranked list. The transplant coordinator contacts hospital of the first name on the list. If they can't take the organ, for whatever reason, the coordinator moves to the next name on the list.

It is also important to understand that the "waitlist" isn't actually a list. The UNOS system doesn't actually have a list. All potential recipient information is entered into a data base. It is only when the donor organ information is entered that the computer finds matches and ranks them based on different criteria.

[The Captain]

Sorry, but when someone circumvents a process in place for decades and goes to the court of public opion via the media using a heartwrenching kid story, and that person miraclously moves to the front of a line of 1700 other people in a manner of days, I have to call bullshit.

And now there is another lawsuite filed for a kid with the same condition:

"And now, another lawsuit has been filed from a boy with cystic fibrosis at the same hospital who needs a new lung."

www.cbsnews.com/8301-204_162-57588078/dying-girl-added-to-adult-lung-transplant-waiting-list-boy-also-sues-to-be-added/

What's the sense of having a set of rules for everyone to follow if people with media worthy stories decide they don't have to follow them to get bumped to the front of the line? 

 

[thyme4change]

Jun 14, 2013 12:42:56 GMT -5 @txsbbtc said:

Jun 14, 2013 12:06:24 GMT -5 thyme4change said:

I really, really hope that the lungs she got were on the merit of medical decisions, not fear of backlash from the media.  I really, really hope that is true.  I have to tell myself it is.  I have to believe that CNN did not bully the transplant board by lazy, emotion based pseudo-journalism.  I have accepted a lot of indecent things about the world, but I am not ready to accept that this girl got lungs that should have gone to another because they called the press.

There is no "board" for deciding who gets which donated organs. When a donor dies, the transplant coordinator at that hospital access the UNOS computer system and enters all the data and information for matching. The computer matches the organs to recipients and spits out a ranked list. The transplant coordinator contacts hospital of the first name on the list. If they can't take the organ, for whatever reason, the coordinator moves to the next name on the list.

It is also important to understand that the "waitlist" isn't actually a list. The UNOS system doesn't actually have a list. All potential recipient information is entered into a data base. It is only when the donor organ information is entered that the computer finds matches and ranks them based on different criteria.

Well, then, I guess it is on the up-and-up. I hope there was no funny business. It just seems coincidental that the perfect set of lungs became available less than 100 hours after the girl was plastered all over the news cycle, with all the tears and blah, blah, blah.  

[Deleted]

They are not being bumped to the front of the line.  They are being allowed to be considered for adult organs. 

[Shooby]

This will have a chilling effect on the whole process. Will every transplant patient now need to file a lawsuit to try to push themselves up the list?

[thyme4change]

Jun 14, 2013 13:34:25 GMT -5 Shooby said:

This will have a chilling effect on the whole process. Will every transplant patient now need to file a lawsuit to try to push themselves up the list?

I don't think that is what happened.  They just sued the government because of an unfair, unnecessary law that prevented the girl from being on the list.  

I suspect the exact same thing would have happened if it hadn't made it onto CNN.  The news exposure shouldn't have effected the judges decision to have the government step out of the way and let the doctors make the decision.  And the news exposure shouldn't have effected the likelihood of a matched donor.  But the news exposure makes the whole process suspect to me.  

[The Captain]

Jun 14, 2013 13:34:18 GMT -5 @txsbbtc said:

They are not being bumped to the front of the line.  They are being allowed to be considered for adult organs. 

I'm sorry but I just can't believe that this girl just "happened" to be added to a list that had over 1700 people on it and just "happened" to move to the very front of the line mere days after getting a media blitz.

I'd have to suspend my perception of reality and fairness greatly for that to happen.

[Deleted]

Jun 14, 2013 13:43:07 GMT -5 The Captain said:

Jun 14, 2013 13:34:18 GMT -5 @txsbbtc said:

They are not being bumped to the front of the line.  They are being allowed to be considered for adult organs. 

I'm sorry but I just can't believe that this girl just "happened" to be added to a list that had over 1700 people on it and just "happened" to move to the very front of the line mere days after getting a media blitz.

I'd have to suspend my perception of reality and fairness greatly for that to happen.

Doesn't matter if you believe it or not.


There is no list. There is no "line" until there is an donor organ. There is no committee to board deciding who gets what.



She may not have even been the first name on the match list. Very often, the first match can't take the organ for one reason or another.

It has happened more than once that someone was added to the waiting list and recieved an organ the very same day.

[The Captain]

Jun 14, 2013 13:54:16 GMT -5 @txsbbtc said:

Jun 14, 2013 13:43:07 GMT -5 The Captain said:

I'm sorry but I just can't believe that this girl just "happened" to be added to a list that had over 1700 people on it and just "happened" to move to the very front of the line mere days after getting a media blitz.

I'd have to suspend my perception of reality and fairness greatly for that to happen.

Doesn't matter if you believe it or not.


There is no list. There is no "line" until there is an donor organ. There is no committee to board deciding who gets what.



She may not have even been the first name on the match list. Very often, the first match can't take the organ for one reason or another.

It has happened more than once that someone was added to the waiting list and recieved an organ the very same day.

You're wrong.  There are criteria for determining matches that are maintained by the OPTN and certain indicators/markers are used to determine who is next in line/best match for an organ as it becomes available.  See my post in #52 - I'm not in medical (and correct me if you are and my understanding is wrong) but based on my reading of the document (and I did read it in full to the best of my abilities) there are criteria which have to be measured and met before you will be spit out as a match when an organ becomes available.

I understand that sometimes in RARE instances someone may get a match soon after getting on the list.  However this is the exception and it totally goes against reality to believe that coincidentally this girl would be one of those lucky few rare patients who don't have to wait and gets an organ just days after a huge media blitz.

I like to believe in miracles but when you get the press and the courts involved my belief in the miraculous gets severly tainted.

[billisonboard]

Jun 14, 2013 12:42:56 GMT -5 @txsbbtc said:

.... It is only when the donor organ information is entered that the computer finds matches and ranks them based on different criteria.

Kobayashi Maru?

[Deleted]

She was a top candidate on the pediatric list but the lawsuit was to change the rules on the adult list so she would move further up the adult list, which she was also eligible for.

The parents of a 10-year-old Pennsylvania girl are urging officials to change the policy regarding organ transplants to allow the sickest to receive the first available appropriate donation, regardless of age.

Janet said Sarah has been awaiting a transplant from a pediatric donor and is also eligible for a lung from an adult donor. Under a policy instituted in 2005, organ allocation policies are supposed to be based on severity of illness rather than the amount of time on the waiting list, but that approach only applies to patients over the age of 12. Sarah is a top priority on the pediatric list, but officials say there are far fewer pediatric donors due to improved treatment.

According to Health Resources and Services Administration, there were 10 lung transplants completed on children 10 and under in 2012. For comparison, there were 1,744 lung transplants on people 11 and older that same year.

Her parents say the severity of Sarah's illness would normally make her the highest priority for an adult lung, but all adults in the region with her blood type will be offered the lungs first, even those more stable and with less severe conditions. After an appeal was declined, the online petition was launched calling for that policy to change and for federal officials to make an "exceptional ruling" on behalf of the child.

www.cbsnews.com/8301-204_162-57586447/pa-parents-say-organ-donation-rules-unfair-to10-year-old-demand-change/

So, it looks like she did bump someone with a less severe condition.

[mrsdutt]

Jun 5, 2013 12:53:40 GMT -5 thyme4change said:

Are we throwing out perfectly good lungs?  Or by moving her up on the transplant list, are we just sentencing some other person, who happens to be over 12 years old, to die?  

Get ready for one of my DH stories.

Due to exposure to a nasty chemical while in the military, DH needed a heart transplant.  He was on a waiting list, but his blood type was rare and there was little chance they would find a heart for him.  The Friday before Good Friday we were called and drove 350 miles in the middle of the night for a possible transplant.  I say possible because there was one other person who needed the heart.  Both of us were quiet during the first part of the ride.  We were thinking the same thing.  Thankfully we were able to communicate our thoughts.  Both of us worried about the other person.  If he was young and had children?  All sorts of questions.  Neither of us wanted this person to go without.

The other man received the heart and we returned home.  I knew DH didn't have much longer to live if he didn't get a new heart.  He was exhausted.

We got a call on Good Friday and someone flew us to Boston.  DH lived 13 more years without any complications - not even hardening of the organ site. (Which was to be expected.)

So, yes, the people receiving the organ have thoughts of the others in need.  We are torn and scared and fearful and happy with any success.  These things are not in our control.  No matter how much we'd like to think so.

[Deleted]

Jun 14, 2013 14:08:26 GMT -5 The Captain said:

Jun 14, 2013 13:54:16 GMT -5 @txsbbtc said:

Doesn't matter if you believe it or not.


There is no list. There is no "line" until there is an donor organ. There is no committee to board deciding who gets what.



She may not have even been the first name on the match list. Very often, the first match can't take the organ for one reason or another.

It has happened more than once that someone was added to the waiting list and recieved an organ the very same day.

You're wrong.  There are criteria for determining matches that are maintained by the OPTN and certain indicators/markers are used to determine who is next in line/best match for an organ as it becomes available.  See my post in #52 - I'm not in medical (and correct me if you are and my understanding is wrong) but based on my reading of the document (and I did read it in full to the best of my abilities) there are criteria which have to be measured and met before you will be spit out as a match when an organ becomes available.



Yes, that is true. And it is exactly what I have been saying. The recipient's information is entered (and updated periodically as some test results are used to determine who is next in line during matching). But until the donor organ information is entered to look for a match, there is no list. So how can someone be bumped to the top of the list before the organ becomes available? My understanding is that the matching and list generation happen instantly (information is entered and the list spits out). So how is that manipulated to put someone at the top of the list?

[thyme4change]

Are any of the data points in the database subjective, i.e. the doctor's opinion, or are all the stats objective facts - like your blood type?  

If they are subjective, could they be manipulated by some well-meaning doctors who are feeling pressured by the hospital/the press/lawyers, etc?

[The Captain]

Ok, I see what your saying.  My wording was imprecise.

Instead of saying I find it miraculous that she was bumped to the head of the list it would be more accurate to say I'm stunned that she was the first and best match for the next organ that became availabe just days after taking the case public.

[Deleted]

Instead of saying I find it miraculous that she was bumped to the head of the list it would be more accurate to say I'm stunned that she was the first and best match for the next organ that became availabe just days after taking the case public.

That was the intention of the parents.  She was already on both pediatric and adult lists.  By going to court to change the criteria on the adult list for this girl they bumped her to the top of the list.  It looks like around 5 lung transplants are done a day on average so it's not too surprising that something became quickly available. 

So how can someone be bumped to the top of the list before the organ becomes available?

Every person is assigned a Lung Allocation Score " calculated from an a series of formulas that take into account the statistical probability of a patient's survival in the next year without a transplant, how long that survival would be, the probability of survival following a transplant, and the projected length of survival post-transplant. A raw allocation score, summarizing all of the above values, is calculated, and finally this score is normalized to obtain the actual LAS, which has a range from 0 to 100."

As a child she was placed under other adults on the adult list although she was eligible for an adult lung.  The court case was to force the adult list to consider her survival in the next year.  Because the girl was already in a coma the lawsuit changing her criteria from child status to adult propelled her to the top of the list.

Each organ is going to have a ton of matches because of the shortage of available donors.  The list determines in which order they match it to a recipient.

[Deleted]

Jun 14, 2013 15:02:26 GMT -5 thyme4change said:

Are any of the data points in the database subjective, i.e. the doctor's opinion, or are all the stats objective facts - like your blood type?  

If they are subjective, could they be manipulated by some well-meaning doctors who are feeling pressured by the hospital/the press/lawyers, etc?

My understanding is that all data is objective (test results, etc). And any well meaning doctor suspected of manipulating things would not only be risking their own license, but the transplant accreditation of their hospital. As far as I know, the doctors themselves do not have access to the database, everything goes through the transplant coordinator.

[The Captain]

Jun 14, 2013 15:15:25 GMT -5 @anne81 said:

Instead of saying I find it miraculous that she was bumped to the head of the list it would be more accurate to say I'm stunned that she was the first and best match for the next organ that became availabe just days after taking the case public.

That was the intention of the parents.  She was already on both pediatric and adult lists.  By going to court to change the criteria on the adult list for this girl they bumped her to the top of the list.  It looks like around 5 lung transplants are done a day on average so it's not too surprising that something became quickly available. 

So how can someone be bumped to the top of the list before the organ becomes available?

Every person is assigned a Lung Allocation Score " calculated from an a series of formulas that take into account the statistical probability of a patient's survival in the next year without a transplant, how long that survival would be, the probability of survival following a transplant, and the projected length of survival post-transplant. A raw allocation score, summarizing all of the above values, is calculated, and finally this score is normalized to obtain the actual LAS, which has a range from 0 to 100."

As a child she was placed under other adults on the adult list although she was eligible for an adult lung.  The court case was to force the adult list to consider her survival in the next year.  Because the girl was already in a coma the lawsuit changing her criteria from child status to adult propelled her to the top of the list.

Each organ is going to have a ton of matches because of the shortage of available donors.  The list determines in which order they match it to a recipient.

Ok, thanks for the claification.  I obviously did not completely understand it earlier.  They already KNEW her criteria would rank her higher in order of priority if she got on the adult list using the same measurement criteria as the adults.

Still, from a medical ethics point of view it begs the question about a cutoff for children vs. adults when trying to find matches.

[billisonboard]

I believe it negatively impacts the willingness of people to donate their or a relative's organs if there is any suggestion that there are questionable practices in determining who gets the organs.

[deziloooooo]

Jun 14, 2013 17:41:01 GMT -5 billisonboard said:

I believe it negatively impacts the willingness of people to donate their or a relative's organs if there is any suggestion that there are questionable practices in determining who gets the organs.

"I'm not quite comfortable with how the one getting this organ of mine is picked ..there fore be danged to you all..I'll just keep it so there....that will teach you...."......correct impression to your thoughts above??

Just wondering...

[billisonboard]

Jun 15, 2013 11:44:15 GMT -5 deziloooooo said:

...

Just wondering...

For myself, the donation of organs is a selfless act of giving done in the spirit that they will be implanted in a person selected in a selfless way. If the recipient is selected in a way that is less than selfless, I feel that the spirit of the gift is violated. It would particularly bother me if there was any indication of a financial consideration. If anyone is going to benefit financial (which I don't think should happen), then it should be my heirs who receive that benefit. In this case, that some suffered the pain of a death while others benefited from emotional manipulation does not feel good to me. I have no problem with a "**** you" to those who would abuse my gift for their selfish gain.

[Value Buy]

Jun 15, 2013 13:10:26 GMT -5 billisonboard said:

Jun 15, 2013 11:44:15 GMT -5 deziloooooo said:

...

Just wondering...

For myself, the donation of organs is a selfless act of giving done in the spirit that they will be implanted in a person selected in a selfless way. If the recipient is selected in a way that is less than selfless, I feel that the spirit of the gift is violated. It would particularly bother me if there was any indication of a financial consideration. If anyone is going to benefit financial (which I don't think should happen), then it should be my heirs who receive that benefit. In this case, that some suffered the pain of a death while others benefited from emotional manipulation does not feel good to me. I have no problem with a "**** you" to those who would abuse my gift for their selfish gain.

So.... you are ok with discriminating against children, or a certain group of people who need the organ(s)?
When I signed my donor card on my driver's license, I never saw an exclusion line included to make sure my organs did not go to a specific group, that I might not consider, "worthy".
And there was nothing that asked if I wanted the organs to go to rich or poor people.
As a matter of fact, it did not ask if the recipient even had to be an American citizen.

And before you ask, no, I do not care who gets my organs (if they will be viable) even an illegal in our country would be ok with me.....
Ok, I admit I would prefer a terrorist in Guantanamo would not qualify, but that is not something I can control.
All I ask, is the transplant works out well, and that could be a crapshoot too.
It's kind of like the old slogan, Give Peace a chance. We have to try to save as many as possible with transplants.

[billisonboard]

Jun 17, 2013 22:35:03 GMT -5 Value Buy said:

Jun 15, 2013 13:10:26 GMT -5 billisonboard said:

For myself, the donation of organs is a selfless act of giving done in the spirit that they will be implanted in a person selected in a selfless way. If the recipient is selected in a way that is less than selfless, I feel that the spirit of the gift is violated. It would particularly bother me if there was any indication of a financial consideration. If anyone is going to benefit financial (which I don't think should happen), then it should be my heirs who receive that benefit. In this case, that some suffered the pain of a death while others benefited from emotional manipulation does not feel good to me. I have no problem with a "**** you" to those who would abuse my gift for their selfish gain.

So.... you are ok with discriminating against children, or a certain group of people who need the organ(s)?
...

My God, not the children!!! I am not swayed by that argument.

I have no problem with discriminating against certain groups of people who need an organ. It makes perfect sense to me that a group of medical experts determine who is discriminated against. It makes no sense to me to have those decisions determined by parents, media, and/or judges.