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Author Topic: Are organ-transplant lists inflated?  (Read 7036 times)
okarol
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« on: March 21, 2008, 11:49:35 PM »

Are organ-transplant lists inflated?

By Rob Stein
The Washington Post
Published: March 22, 2008

WASHINGTON — The list of patients waiting for organ transplants, which is widely used to promote organ donations, includes thousands who are ineligible for the operations, according to statistics kept by the national network that manages the allocation of organs.

More than a third of the nearly 98,000 patients on the list at any one time are classified as "inactive," meaning they could not be given an organ if it became available because they are too sick, or not sick enough, or for some other, often unexplained, reason.

Although the need for organs far outpaces the supply, critics say the large number of inactive patients on the list may signal that potential recipients are languishing in limbo too long and that including them could mislead potential donors, recipients and policymakers about the magnitude of the need.

Officials at the United Network for Organ Sharing (UNOS), which oversees the transplant system under a federal contract and provided a breakdown of its waiting list at the request of The Washington Post, defend the practice. Many patients are inactive for only short periods because of temporary complications or other issues that are often resolved, they say.

But critics note that a significant number of patients have been inactive for more than two years and may never become eligible.

"The wait list is dishonest," said Donna L. Luebke, a nurse who said she was rebuked by UNOS officials when she complained about the list near the end of the three years she served on the organization's board of directors. "The public deserves to know the true numbers."

The revelation comes at a time when advocates of organ donation have come under fire for using increasingly aggressive strategies to obtain organs, justifying their efforts by citing the long and steadily growing waiting list.

"Part of the argument for the push to get more people to be donors, and for expanding the types of procedures that we do to get organs, is there's all these people waiting for organs and dying in the meantime," said Joan McGregor, a bioethicist at Arizona State University. "If the number is not accurate, that's giving people the false impression that the situation is more serious than it is. It's deceptive."

The advocates, however, say that there are compelling reasons to keep many inactive patients on the list and that the continuing shortfall in organs overshadows any questions about them.

"Whether it's 75,000 or 100,000, there are still far more people who need transplants than can get them," said Robert Higgins, president-elect of UNOS. "None of this changes the fact that there is a significant number of people who die waiting."

Of 97,772 patients on the waiting list as of Feb. 29, which officials said provided a representative snapshot, 32,014 — nearly 33 percent — were inactive.

The proportion of inactive patients varied with the type of organ, ranging from nearly 26 percent of those needing livers to nearly 69 percent of those waiting for a pancreas. Nearly 33 percent of those waiting for kidneys, the transplant most often sought, were inactive.

Most inactive patients had been ineligible for at least a year — and often for more than two years. More than 55 percent of the patients on the list for hearts, and nearly 49 percent waiting for livers, had been inactive for more than two years. Nearly half of those waiting for kidneys had been inactive for at least a year — and nearly a third for more than two years.

"I could expect people to be on there for months potentially," said Arthur L. Caplan, a University of Pennsylvania bioethicist. "But more than two years? What's that about?"

No information was available for a significant fraction because they became inactive before UNOS started collecting that information in 2006. In some cases, evaluations of patients' suitability for a transplant were never completed. That was the case for more than 36 percent of kidney transplant candidates.

"This raises the question about whether the transplant centers are doing their jobs," Caplan said. "If I've been on the inactive list for two years, my question is, 'What has been done to either get me on the active list or take me off the list?' "

UNOS officials said it is up to individual centers and doctors to track their patients' status, a position that Caplan criticized as unacceptable. "You can't just sit there and look at those numbers and dump responsibility back locally," Caplan said. "UNOS is supposed to steward those patients."

Higgins acknowledged that "there's probably room to do a better job cleaning up the wait list."

Critics say that overstating the need could have various negative consequences, including undermining public confidence in the system.

"The list is what they use for propaganda. It's the marketing tool. It's always: 'The waiting list. The waiting list. The growing waiting list,' " Luebke said. "It's what they use to argue that we need more organs. But it's dishonest."

The size of the list could be particularly important to people who are considering becoming a "living donor" by donating a kidney or a piece of their lung, liver or pancreas — a practice that has spurred intense debate over whether such donors are fully counseled about the risks.

Exaggerating the size of the list is also unfair to active recipients, said Luebke, who donated a kidney to her sister in 1994.

"It plays on the psyche of the person who's on the wait list," she said. " 'Am I up against 74,000 or 50,000?' "

But officials defended the practice, saying that patients may become inactive for reasons that do not permanently disqualify them. They may develop an infection that temporarily makes them ineligible, for example. Keeping kidney patients on the list when they are not ready enables them to move up without denying anyone else an organ, they said.

"I don't believe there is any reason to be concerned about this," said James F. Burdick, who heads the division of transplantation at the federal Department of Health and Human Services. "I don't think there's anything that indicates that patients are not getting a fair shake."

Others noted that the size of the list is often used in lobbying efforts to seek funding or to change organ-procurement policies. Donation advocates are campaigning to revise state laws to make it easier to obtain organs in ways some say may sacrifice the needs of dying patients and their families.

"It does help the political cause to push for legislation and policies to increase donor rates to use the bigger numbers," Caplan said. "It's not the accurate and truthful thing to be doing."

Advocates are also pushing a controversial strategy for obtaining organs from patients who are not yet brain-dead, known as donation after cardiac death, or DCD.

"The push for DCD is based solely on the idea that we have a huge disparity of organs," said Gail Van Norman, an anesthesiologist and bioethicist at the University of Washington.

"But if 30 percent of the names are the list are inactive, the data isn't a true reflection."

http://deseretnews.com/dn/view/0,5143,695263720,00.html
........

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« Reply #1 on: March 22, 2008, 03:49:35 AM »

Oh, some of the statements in this article make me mad.  Get ready, I feel it coming on.  :rant;

Marvin just moved back to "active" status on the list from a three-month period of being "inactive" while he fought off MRSA.  And, over the last 13 years, he's been "inactive" several other times for various health reasons (mostly infections -- his "inactive" status never lasted longer than a month or two).  While you are "inactive," your time continues to build, but you're not eligible if a kidney that matches you becomes available during this time period; you are simply "passed over" and the kidney goes to someone else that also matches, but, at the same time, your "wait time" is intact and continues. 

Just because Marvin's body was not medically ready to have a transplant from Dec. to the first of March doesn't mean that he no longer needs a new kidney and, hence, should have been removed from the list.  What are they suggesting?  "Inactive" patients be dropped and have to start back over at on the list at Day One when (and if) they ever can get "active" again?  That hardly seems like a fair system.



Although the need for organs far outpaces the supply, critics say the large number of inactive patients on the list may signal that potential recipients are languishing in limbo too long and that including them could mislead potential donors, recipients and policymakers about the magnitude of the need.





Marvin's been "languishing in limbo too long" and it has nothing to do with the number of people on the list (active or inactive); it has to do with the too few organs donated!  And...they're worried about misleading everybody about the "magnitude of the need" ....Jeeezzz -- I think if some people (those outside the realm of dialysis patients and caregivers) would walk a mile in Marvin's shoes, they would truly see the MAGNITUDE of his need for a transplant.

"The wait list is dishonest," said Donna L. Luebke, a nurse who said she was rebuked by UNOS officials when she complained about the list near the end of the three years she served on the organization's board of directors. "The public deserves to know the true numbers."


Okay, Miss Nurse, who thinks the public deserves to know the true numbers...Listen to these numbers.  Marvin has had 1,632 dialysis treatments as of yesterday.  He's had 42 surgeries (almost all related to ESRD and/or its complications).  He's had 21 dialysis accesses surgically implanted/created in his body (22 if you count the temp they put in his groin for a day).  He's been on the list for 13 years.  He's had 8 "standy-by" calls (where they say, "We have a donated kidney that may match you.  Stay by the phone.  Don't eat or drink.  We'll call you back."), and he hasn't gotten a kidney off the list yet.  Over the years, he's seen somewhere around 200 people from his clinic die (well, he only actually saw two die in the clinic -- the others died in the hospital or at home and just never came back to the clinic).  His urine output is 0, and has been 0 for years now.  He's only 52 years old, and his life expectancy without dialysis is somewhere (so we've been told) between 10 -14 days.  To me, those TRUE numbers say an awful lot.  I also think it's numbers like these that the general public doesn't want to know.


"The list is what they use for propaganda. It's the marketing tool. It's always: 'The waiting list. The waiting list. The growing waiting list,' " Luebke said. "It's what they use to argue that we need more organs. But it's dishonest."


"It does help the political cause to push for legislation and policies to increase donor rates to use the bigger numbers," Caplan said. "It's not the accurate and truthful thing to be doing."



To Marvin, the list isn't "propaganda."  It's hope.  I can't understand how counting all of those in need (even the "inactive" ones -- who are, by the way, still in need) could be considered "dishonest."

In my opinion, there's not enough push for legislation and policies to increase donor rates -- even with the so-called "bigger numbers."  It's like some in this article are saying that the numbers are being inflated to get more people to donate.  But, inflating numbers won't do that -- public awareness and education as to the effects of dialysis will.
« Last Edit: March 22, 2008, 03:51:53 AM by petey » Logged
petey
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« Reply #2 on: March 22, 2008, 03:53:11 AM »

I forgot to say "Thanks" to okarol for posting this article.  She knows my rant was not directed at her.
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« Reply #3 on: March 22, 2008, 04:06:50 AM »

Alright petey, very good  :rant; I'd like to just add that all this comes down to transplant center statistics, they are the ones driving this bus.  :rant; I was lucky enough to hear a conversion between transplant surgeon and transplant nurse that made me want to  :puke; No legislation is going to promote donation, only education and awareness are going to make a difference. That's my  :twocents; worth.
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« Reply #4 on: March 22, 2008, 08:16:32 AM »

My first introduction to renal failure was seeing an ad on television showing two boxers in a ring, with a voice-over that said that a rabbit punch is illegal because it could hurt the kidneys, which are vital organs. The ad went on to urge people to sign a donor card to donate their organs for transplant after death.

I saw that ad on television in 1966!  That is how long the much touted "education and awareness" campaign to encourage organ donation has been going on, and now, instead of the problem gradually being solved after forty years of propaganda, it is getting worse, since the number of people needing a kidney is growing much faster than the number of kidneys donated, which has been stagnant for some time now.

While I agree that it is unlikely that sensible legislation will ever be passed to improve organ procurement in the US, the coercion of the law and not "education and awareness" is the only thing that will ever increase the number of organs for transplant.
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« Reply #5 on: March 22, 2008, 01:28:08 PM »

This article has been the subject of discussion on several boards. My heterodox opinion is here:
http://www.billpeckham.com/from_the_sharp_end_of_the/2008/03/waiting-for-a-t.html
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« Reply #6 on: March 22, 2008, 01:34:31 PM »

I think having even one person on the list is one too many!
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« Reply #7 on: March 22, 2008, 01:40:22 PM »

I think having even one person on the list is one too many!


:thumbup; AMEN sister!
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« Reply #8 on: March 22, 2008, 07:14:03 PM »

Do they not get that if they did somehow change policy so that we had more donors, both living and dead, we'd still have more people waiting?  If the list was suddenly, drastically shortened, don't you think they would consider expanding the criteria for getting on the list - so older people could get on, say, or those with other health problems that currently keep them off the list?  Right now, the resources are so scarce, they have to pick and choose among those with the best health and the best chance of keeping the kidney for a long time.  If we could get the waiting list shortened, then there are a lot of deserving people who might be able to get a kidney and a better quality of life, regardless of how long it might last them.
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« Reply #9 on: March 23, 2008, 12:01:52 PM »

The article's main point seems to be that one-third of the oft-quoted 98,000 people on the waiting list are inactive. They're saying that the number is misleading, and we don't really have a crisis. Ok, 14-15 people die every day in the US waiting for an organ transplant; two-thirds of that is 9-10. Whoever wrote this article should have to apologize to every one of those 9-10 families every day for the next year. Then maybe they'll see that there IS a need, and there is no "propoganda" involved!

BTW, great post, Petey!
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« Reply #10 on: March 23, 2008, 02:11:31 PM »

The article's main point seems to be that one-third of the oft-quoted 98,000 people on the waiting list are inactive. They're saying that the number is misleading, and we don't really have a crisis. Ok, 14-15 people die every day in the US waiting for an organ transplant; two-thirds of that is 9-10. Whoever wrote this article should have to apologize to every one of those 9-10 families every day for the next year. Then maybe they'll see that there IS a need, and there is no "propoganda" involved!

BTW, great post, Petey!

I don't think the article is saying we don't have a crises. I think the article is saying that the 90,000 number is misleading and it is.

A transplant is not life saving; there are not 70,000 people waiting for a kidney transplant. Rather, a transplant is often a better form of treatment than dialysis; about 50,000 people are waiting for a kidney and about 25,000 are trying to get on (or back on) the waiting list, compared to about 300,000 living on dialysis.

It may be that for some people these are quibbles and the difference between the two statements don't amount to much. However, there are people to whom the differences are important. Personally, I think programs are always better off being exact and transparent in their language. When programs start rounding and making blanket statements that's where trouble lies.

Once programs start to round or fudge the numbers you end up with (http://www.baltimoresun.com/news/nation/bal-te.kidney25feb25,0,3734472.story) statements like this from Dr. Mark Stegall, chief of transplant surgery at the Mayo Clinic in Rochester, Minn. "The number of people who live 15 years on dialysis is almost zero,". That's wrong Dr. Stegall, and he certainly knows better. Dr. Stegall's statement and those of the same ilk are unhelpful. That sort of statement is why people do not have unconditional confidence in the organ procurement system. But beyond the immediate impact of false statements taking this approach of dramatic puffery is self defeating. It sells donors and recipients short.

Dialysis does not kill people. Kidney disease kills people. For many kidney transplant is the best treatment for their kidney disease but there are other options. It is not, routinely, a matter of life and death. If UNOS and the transplant docs were more exact in their language it would increase people's confidence in the organ procurement system and increase the number of donors more than do these ham handed attempts to create additional drama.

The ex UNOS board member quoted in this article is certainly in favor of donation, she is against undercutting the donation message by using inexact language. I think that is a valid position.

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« Reply #11 on: April 03, 2008, 11:13:24 PM »

Op Ed: Transplant need is real, not ‘inflated’
UNOS: Recent suggestion that waiting list is manipulated is misguided


By Dr. Timothy L. Pruett
President, United Network for Organ Sharing and Organ Procurement and Transplant Network
Special to MSNBC

Recently, media reported that one-third of the nearly 100,000 patients awaiting organ transplants in the U.S. are inactive. This is true, but the interpretation that these patients are inappropriate or ineligible for transplantation, and that this practice has been encouraged to create an inflated demand for organs, needs a response.

As one of its responsibilities under its contract with the Health Resources and Services Administration, the United Network for Organ Sharing (UNOS) operates the national Organ Procurement and Transplantation Network (OPTN) waiting list. Persons with organ failure are added to that list only when one of the country’s 250 transplant centers determines they need a transplant. The “active” list includes only people determined by their doctors to be ready for transplantation. “Inactive” patients are not considered for an organ. However, being “inactive” does not mean the individual is an inappropriate candidate or ineligible to ever receive an organ.

Doctors use the inactive status as a way to manage the waiting list to ensure each patient is ready for transplant the moment an organ is offered. If a patient is too sick currently, the doctor lists that patient as inactive while attempting to restore the patient’s health to make transplantation possible. Sadly, such individuals sometimes die while still listed as inactive. But many patients inactivated during alternative treatments return to the active list and are transplanted successfully.

More than one-fifth of inactive liver and heart candidates are inactive because they are temporarily too well for a transplant, yet they have end-stage liver or heart disease and will likely need a transplant eventually. A fourth of inactive kidney-pancreas candidates are inactive because their doctors have determined they are temporarily too sick for a transplant.

OPTN policy for kidney allocation depends largely upon the length of time a person has been listed. Several years ago, OPTN policies were changed to allow waiting time accumulation for “inactive” patients. This was done to not penalize patients for conditions outside of their control. As waiting times have increased, some transplant centers initially screen patients for transplant, add them to the list, but postpone full medical evaluations until they are more likely to receive an organ. This saves having to repeat many of the tests at a later point.

Determining that a particular patient should no longer be listed at all also is a medical decision, which physicians do not make lightly, or without fully understanding the patient’s medical condition. Delisted patients lose all their waiting time, and it is utterly devastating to them and their families.

UNOS reports the total number of patients on the list because every one of them needs a transplant or their doctors would not have listed them. Reporting the number of “active” candidates at any given time would not change the fact that there is a severe organ shortage.

Therefore, the transplant community has no incentive to “inflate” the waiting list to “market” the need for organ donations. That need is real, and immediate. Suggesting otherwise gravely endangers the lives of tens of thousands of desperately needy Americans.

http://www.msnbc.msn.com/id/23889675/
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Jenna is our daughter, bad bladder damaged her kidneys.
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7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
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« Reply #12 on: April 04, 2008, 08:56:51 AM »

I strongly disagree with the view that transplants are not life-saving.  If you extend people's lifespan by a given intervention, then you save their lives during the period of life beyond what would have been expected without the intervention.  Non-diabetics aged 20 to 39 on dialysis typically live 21 years; with a transplant that same group lives 32 years.  Diabetics aged 20 to 39 on dialysis live 8 years, which is about the average waiting time for a transplant in many developed countries, meaning that half of that group will die waiting.  But that same group with a transplant can expect to live for 25 years.  Every minute those diabetics live past their 8-year life expectancy on dialysis represents a saving of their life by the transplant for that time. It seems simple common sense to say that whenever we save the life of a person, all we are doing is extending the person's life expectancy, since we all die sometime.  So by this standard, transplants are indeed life saving.
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« Reply #13 on: April 04, 2008, 09:07:48 AM »

I wonder how many people are "dead" and still listed.  If it is up to the Nephrologists and their staff then I'm sure timley reporting falls through the cracks.

What about mulit-listings.  There are some people listed 3 or 4 places.

I agree with Kitkat.  One person on the list is too many. 

I would think that every nurse or tech or Nephrologist would donate one of their kidneys if they could just to show the world how easy it is and what a difference it can make. 

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« Reply #14 on: April 04, 2008, 09:47:25 AM »



A transplant is not life saving;


Bill - that's only true for kidney transplants.  The UNOS list includes those waiting for livers, hearts, and lungs.  Kidney patients have the option of dialysis, so a transplant becomes a better treatment, not a life saving treatment.  The thousands waiting for the other organs on the list do not have that option.  My mother died because she became to sick for a liver transplant.  She was in Inactive status on the list when she died.  Watching her die was bad enough - having the docs say that she was off the list and would have no chance of a transplant even if she regained some health would have been even worse.
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« Reply #15 on: April 05, 2008, 05:32:43 PM »



A transplant is not life saving;


Bill - that's only true for kidney transplants.  The UNOS list includes those waiting for livers, hearts, and lungs.  Kidney patients have the option of dialysis, so a transplant becomes a better treatment, not a life saving treatment.  The thousands waiting for the other organs on the list do not have that option.  My mother died because she became to sick for a liver transplant.  She was in Inactive status on the list when she died.  Watching her die was bad enough - having the docs say that she was off the list and would have no chance of a transplant even if she regained some health would have been even worse.
That's true jbeany. Usually I say kidney transplant when I mean kidney transplants. That time I didn't. Sorry for the confusion.
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« Reply #16 on: April 14, 2008, 10:37:10 PM »

April 14, 2008, 6:00 a.m.

Code Red
The organ shortage is not something to play down.


April 14, 2008

By Sally Satel & Benjamin Hippen

A few weeks ago, the Washington Post broke the dramatic medical news that as many as one third of all people waiting for an organ transplant are actually ineligible to receive one. Could this mean that the shortage of kidneys, livers, hearts, and lungs is not as dire as we thought?

Unfortunately, no. If anything, the fact that many patients are ineligible is a sign of urgency, not a reason to be complacent.

According to the United Network for Organ Sharing (UNOS), the entity that maintains the waiting list under a monopoly contract with the Department of Health and Human Services, there are 98,517 people — transplant candidates — waiting for an organ. By summer, the queue will reach a daunting 100,000, with three quarters seeking kidneys.

Are these numbers just “propaganda” meant to generate a false sense of crisis?

Yes, according to Donna Luebke, a nurse, and former member of the UNOS board of directors. “The list is what they use for propaganda,” she told the Post. “It’s the marketing tool. It’s always: ‘The waiting list. The waiting list. The growing waiting list . . . It’s what they use to argue that we need more organs. It’s dishonest.”

Luebke believes the numbers are hyped. In truth, the organ shortage is every bit as dire as it has been portrayed — even worse.

Strikingly, most patients who are designated by their physicians as ineligible for immediate transplant were once fit enough to receive an organ. Tragically, they deteriorated during the years-long wait and became too sick to transplant. And over 6,400 died last year (over two-thirds of them patients awaiting a kidney), unable to hold out for what would have been a life-saving organ.

In some regions of California, for example, where the waiting time is so protracted, physicians assume most patients will not survive long enough to receive a renal transplant. So they put every referral on the list and then when the candidate gets near the top they do the evaluation — thus, they do not “waste” their time doing evaluations on people who will die while waiting.

Another reason physicians deem patients ineligible is because they developed a reversible condition, such as infection, which make them too fragile for surgery or the anti-rejection medications that protect the new organ.

Indeed, the shortage itself is the very reason that doctors keep these “ineligible” patients on the list. If the meter were totally reset — by removing temporarily ill candidates from the list altogether — they lose all their accumulated time and would probably not survive a new wait after becoming healthy enough for transplantation. Let’s be clear: being ineligible on the list does not affect whether or not the active people get transplanted.

We cannot afford to lose sight of the reason the list exists in the first place: a desperate scarcity. If organs weren’t so hard to find, there would be no list at all or only a short one. In all of American medicine transplantation is the only treatment that is rationed by supply. With an ample pool of organs, patients would receive kidneys, livers, hearts, and lungs with the same routine efficiency as people with broken legs get them set.

In fact, the waiting time to renal transplantation is getting longer. Today is it five to eight years in major cities and by 2010 it will be ten years for some patients. With about one in three waitlisted patients on dialysis not surviving beyond five years, the majority of candidates just don’t have that kind of time.

This very trend is potent evidence why those who say the need is not so pressing are dead wrong. If the list had so many ineligible patients, then time-to-transplantation would be getting shorter not longer.

Finally, the waitlist doesn’t even reflect the full scope of the problem. A 2008 study in the American Journal of Transplantation estimates that over 130,000 dialysis patients with a “good prognosis” (defined as an expected five-year survival or longer on dialysis) are never even referred for transplantation. These voiceless thousands don’t show up on anybody’s “list.”

Nonetheless, there are concerns about crying wolf. “It’s unfair. It’s simply unacceptable,” Arthur Caplan, a bioethicist at the University of Pennsylvania’s School of Medicine told ABC News. “You can’t have one-third of the list out there that doesn’t really belong . . . you can’t inflate the numbers.”

Inflation? The real deception is suggesting that the organ shortage is a manufactured crisis.

— Sally Satel is a resident scholar at the American Enterprise Institute. Benjamin Hippen is a nephrologist and member of UNOS ethics committee.

http://article.nationalreview.com/print/?q=MWY3YjBiODI2ZDJlZGZhMWU3ZTgxNTFhYzFlODQ5YzM=
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
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Her royal highness Queen Ruth on her throne, RIP

« Reply #17 on: April 14, 2008, 11:52:04 PM »

Okarol, thank you for posting these articles.

Mikey  :thx;
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06/85 Diagnosed with type 1 Diabetes
10/04 Radical Nephrectomy (Kidney Cancer or renal cell carcinoma)
02/08 Started Hemodialysis
04/08 Started Peritoneal Dialysis (CAPD)
05/08 Started CCPD (my cycler: The little box of alarms)
07/09 AV Fistula and Permacath added, PD catheter removed. PD discontinued and Hemodialysis resumed
08/09 AV Fistula redone higher up on arm, first one did not work
07/11 Mass found on remaining kidney
08/11 Radical Nephrectomy, confirmed that mass was renal cell carcinoma
12/12 Whipple, mass on pancreas confirmed as renal cell carcinoma

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« Reply #18 on: April 15, 2008, 07:44:39 PM »

April 14, 2008, 6:00 a.m.

Code Red
The organ shortage is not something to play down.


April 14, 2008

By Sally Satel & Benjamin Hippen

A few weeks ago, the Washington Post broke the dramatic medical news that as many as one third of all people waiting for an organ transplant are actually ineligible to receive one. Could this mean that the shortage of kidneys, livers, hearts, and lungs is not as dire as we thought?

Unfortunately, no. If anything, the fact that many patients are ineligible is a sign of urgency, not a reason to be complacent.

According to the United Network for Organ Sharing (UNOS), the entity that maintains the waiting list under a monopoly contract with the Department of Health and Human Services, there are 98,517 people — transplant candidates — waiting for an organ. By summer, the queue will reach a daunting 100,000, with three quarters seeking kidneys.

Are these numbers just “propaganda” meant to generate a false sense of crisis?

Yes, according to Donna Luebke, a nurse, and former member of the UNOS board of directors. “The list is what they use for propaganda,” she told the Post. “It’s the marketing tool. It’s always: ‘The waiting list. The waiting list. The growing waiting list . . . It’s what they use to argue that we need more organs. It’s dishonest.”

Luebke believes the numbers are hyped. In truth, the organ shortage is every bit as dire as it has been portrayed — even worse.

Strikingly, most patients who are designated by their physicians as ineligible for immediate transplant were once fit enough to receive an organ. Tragically, they deteriorated during the years-long wait and became too sick to transplant. And over 6,400 died last year (over two-thirds of them patients awaiting a kidney), unable to hold out for what would have been a life-saving organ.

In some regions of California, for example, where the waiting time is so protracted, physicians assume most patients will not survive long enough to receive a renal transplant. So they put every referral on the list and then when the candidate gets near the top they do the evaluation — thus, they do not “waste” their time doing evaluations on people who will die while waiting.

Another reason physicians deem patients ineligible is because they developed a reversible condition, such as infection, which make them too fragile for surgery or the anti-rejection medications that protect the new organ.

Indeed, the shortage itself is the very reason that doctors keep these “ineligible” patients on the list. If the meter were totally reset — by removing temporarily ill candidates from the list altogether — they lose all their accumulated time and would probably not survive a new wait after becoming healthy enough for transplantation. Let’s be clear: being ineligible on the list does not affect whether or not the active people get transplanted.

We cannot afford to lose sight of the reason the list exists in the first place: a desperate scarcity. If organs weren’t so hard to find, there would be no list at all or only a short one. In all of American medicine transplantation is the only treatment that is rationed by supply. With an ample pool of organs, patients would receive kidneys, livers, hearts, and lungs with the same routine efficiency as people with broken legs get them set.

In fact, the waiting time to renal transplantation is getting longer. Today is it five to eight years in major cities and by 2010 it will be ten years for some patients. With about one in three waitlisted patients on dialysis not surviving beyond five years, the majority of candidates just don’t have that kind of time.

This very trend is potent evidence why those who say the need is not so pressing are dead wrong. If the list had so many ineligible patients, then time-to-transplantation would be getting shorter not longer.

Finally, the waitlist doesn’t even reflect the full scope of the problem. A 2008 study in the American Journal of Transplantation estimates that over 130,000 dialysis patients with a “good prognosis” (defined as an expected five-year survival or longer on dialysis) are never even referred for transplantation. These voiceless thousands don’t show up on anybody’s “list.”

Nonetheless, there are concerns about crying wolf. “It’s unfair. It’s simply unacceptable,” Arthur Caplan, a bioethicist at the University of Pennsylvania’s School of Medicine told ABC News. “You can’t have one-third of the list out there that doesn’t really belong . . . you can’t inflate the numbers.”

Inflation? The real deception is suggesting that the organ shortage is a manufactured crisis.

— Sally Satel is a resident scholar at the American Enterprise Institute. Benjamin Hippen is a nephrologist and member of UNOS ethics committee.

http://article.nationalreview.com/print/?q=MWY3YjBiODI2ZDJlZGZhMWU3ZTgxNTFhYzFlODQ5YzM=

Yep -- this is what I wanted to say but just couldn't find the words.
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Bill Peckham
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« Reply #19 on: April 15, 2008, 08:59:07 PM »

No one has ever referred to me as voiceless before.

http://www.billpeckham.com/from_the_sharp_end_of_the/2008/04/code-red-speaks.html
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