I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: News Articles => Topic started by: okarol on February 24, 2011, 12:13:32 AM
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Under kidney transplant proposal, younger patients would get the best organs
By Rob Stein
Washington Post Staff Writer
Wednesday, February 23, 2011; 11:04 PM
The nation's organ-transplant network is considering giving younger, healthier people preference over older, sicker patients for the best kidneys.
Instead of giving priority primarily to patients who have been on the waiting list longest, the new rules would match recipients and organs to a greater extent based on factors such as age and health to try to maximize the number of years provided by each kidney - the most sought-after organ for transplants.
"We're trying to best utilize the gift of the donated organ," said Kenneth Andreoni, an associate professor of surgery at Ohio State University who chairs the committee that is reviewing the system for the United Network for Organ Sharing (UNOS), a Richmond-based private nonprofit group contracted by the federal government to coordinate organ allocation. "It's an effort to get the most out of a scarce resource."
The ethically fraught potential changes, which would be part of the most comprehensive overhaul of the system in 25 years, are being welcomed by some bioethicists, transplant surgeons and patient representatives as a step toward improving kidney distribution. But some worry that the changes could inadvertently skew the pool of available organs by altering the pattern of people making living donations. Some also complain that the new system would unfairly penalize middle-aged and elderly patients at a time when the overall population is getting older.
"The best kidneys are from young adults under age 35 years. Nobody over the age of 50 will ever see one of those," said Lainie Friedman Ross, a University of Chicago bioethicist and physician. "There are a lot of people in their 50s and 60s who, with a properly functioning kidney, could have 20 or more years of life. We're making it harder for them to get a kidney that will function for that length of time. It's age discrimination."
More than 110,000 Americans are listed as waiting for organs, including more than 87,000 who need kidneys. Only about 17,000 Americans get kidneys each year, and more than 4,600 die because they did not get one in time.
"It's a big shift," said Arthur C. Caplan, a University of Pennsylvania bioethicist. "For a long time, the whole program has been oriented toward waiting-list time. This is moving it away from a save-the-sickest strategy to trying to get a greater yield in terms of years of life saved."
If adopted, the approach could have implications for other decisions about how to allocate scarce medical resources, such as expensive cancer drugs and ventilators during hurricanes and other emergencies, Caplan said.
"This is a fascinating canary-in-a-cave kind of debate," he said. "We don't want to talk about rationing much in America. It's become taboo in any health-care discussion. But kidneys reminds us there are situations where you have to talk about rationing. You have no choice. This may shine a light on these other areas."
An evolving system
The current system, which dates to 1986, was first based largely on giving kidneys to the patients who matched the organs best, but it evolved to take a first-come, first-served approach made possible by safer, more powerful anti-rejection drugs. Today, the UNOS's Organ Procurement and Transplantation Network (OPTN) gives priority to patients seeking organs from someone who dies based mostly on who has waited the longest.
"It was just a fairness issue," Andreoni said. "You're next in line. It's your turn."
The problem is that, in some cases, elderly recipients get organs from much younger donors whose kidneys could have provided far more years of healthy life to younger, heathier patients. Younger patients can receive older or less-healthy organs that wear out more quickly, forcing them back onto the transplant list in a few years.
The 30-member UNOS Kidney Transplantation Committee, which has been reviewing the system for about six years, last week quietly began circulating for public comment a 40-page document outlining possible revisions.
Under one scenario, for 80 percent of kidneys, patients 15 years older or younger than the donor would get higher priority. The remaining 20 percent of organs - those deemed to have the best chance of lasting the longest based on the age and health of the donor and other factors - would be given to recipients with the best chances of living the longest based on criteria such as their age, how long they've been on dialysis and whether they have diabetes.
M. Jill McMaster, a UNOS board member representing the public, acknowledged that the new system would put older people at a disadvantage, but she argued that it is necessary.
"I'm 60 years old, and I have a transplant. But if I were to need a second transplant, I wouldn't have a chance of getting the best organs, whereas in the past I did have a chance," McMaster said. "What we're asking those on the list to do is hard when you are sick, which is to look at the needs of everybody. I think it's the right thing to do."
Although many of the details about how the new concept would be implemented still have to be worked out, McMaster said it is likely to be adopted.
Public comments invited
The public has until April 1 to comment on the idea, which would make the kidney system more similar to those used to allocate livers, hearts and lungs. The committee will take those comments into account before formally proposing the specific changes, which will be open to public comment again before going to the UNOS board of directors. The board could approve final changes by June 2012.
"I strongly endorse this," Robert M. Veatch, a bioethicist at Georgetown University, wrote in an e-mail. "I think it is defensible on both fairness and efficiency grounds."
But others worry that the changes could reduce the overall number of organs available for transplants or inadvertently further shift the matches between organs and recipients by affecting living donors, who are not regulated by UNOS. Some relatives who would have donated a kidney to a young patient might now decide not to, for example, putting pressure on other relatives to donate kidneys to older family members. In addition, the changes would do nothing to address the wide variation in waiting times in different parts of the country.
"If we really want to improve things, we need to address the variation in access to transplants based on geography," Ross said. "This factor, more than any other, would increase the overall number of life years gained from kidney transplantation."
Some argued that a better solution would be to give recipients the option of choosing what donor kidneys to accept.
"Some younger people may accept a donor that is higher risk and may not last as long if they could get it sooner," said Richard Freeman, chairman of surgery at Dartmouth Medical School. "It should be more patient-based and less driven by absolute gain in life years."
Others questioned the formula that would be used to match patients and organs. Because the system would be more complicated, it could backfire by creating suspicions of cheating, eroding confidence and reducing organ donations.
"It works well enough the way it is, and everyone understands it, which is important to maintain the public trust," said Benjamin Hippen, a kidney specialist at Metrolina Nephrology Associates in Charlotte.
http://www.washingtonpost.com/wp-dyn/content/article/2011/02/23/AR2011022306875_pf.html
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Not sure I like this idea.
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I read the 40-some odd paged proposal document last week, and frankly, it makes sense. It's not as simple as what has been discussed in this article.
http://optn.transplant.hrsa.gov/SharedContentDocuments/KidneyAllocationSystem--RequestForInformation.pdf
This is the link to the proposal. It's not just a matter of "younger patients get the best organs". It is much more nuanced than that.
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They've already spent 6 years coming up with this proposal after many, many consultations with people in the "renal community". It will be quite a few years before any changes are implemented. One proposed change is that your waiting time begins on the day you start dialysis or the day your egfr dips below 20, whichever is the longer, instead of your waiting time beginning on the day stated on your confirmation letter. I think this is fair because you lose a lot of time just getting through all the testing! I could have an extra 8 months accrued under the proposed changes.
Pediatric patients would still be prioritized, along with highly sensitized patient.
Very broadly speaking, they are trying to match the age of the donor to the age of the recipient +/- 15 years. So, if you are 60, you'd be matched with a kidney from a donor who is 45-75 years old. That's still a big range.
I am not sure that I can agree that a recipient is somehow more deserving just because of their age. A 60 year old may have an established place in the community where s/he volunteers or mentors a troubled teen or maybe, with the economy so bad, has grandchildren to look after. A 20 year old may be a slacker or a dead beat; being young doesn't make him virtuous. But this is why this proposal exists, to better match kidneys and make sure that the donor will get as much as possible out of a kidney. If you read the proposal, it does make sense, but like I said, it is not as straightforward as you'd think. You have until April to send OPTN your own thoughts. The bottom line is that there are far more people who need kidneys than there are donors. The ideal would be to 1. have better pre-dialysis care to cut down on the dialysis population in the first place, 2. look again at our present living donor protocols and think about revamping those, 3. address organ wastage (the proposal actually touches on that subject). With the ESRD population growing so quickly, the present system needs revision, and I can't find anything too wrong with the proposal.
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I'm surprised that no mention has been made of "extended" or "expanded" organs. Those are organs from an older person, say 50 or 60 years old, which they prefer not to give to a younger person due to the life-term of the organ. I'm 72 and I'm on the list for an "extended" kidney at Cedars-Sinai in Los Angeles. For my blood type, they estimate my wait at 3 to 4 years. I wish!
Also, I went on the waiting list as of the day I first started dialysis. My confirmation letter had no bearing on my start date. Maybe there are different rules in the various States?
http://ihatedialysis.com/forum/Smileys/classic/huh.gif
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Don't they come out with one of these proposals every few years? I can remember this argument from the transplant forum five years ago. Some people wanted to make it about merit, I remember one particularly angry member telling us she was "the most compliant dialysis patient in the world" or similar. I think we know that we don't want to go there when it comes to kidney allocation.
I am all for it. And Bill, I was going to mention both EC and high-risk donors, but you beat me to it. I believe everyone should have a shot at transplant if they want it so long as there is not a real danger to them medically. (When will they drop those silly BMI requirements? They don't have the evidence!)
I don't have the desire to read a 40-page proposal at the moment, but I trust that they put some thought into this. I really think that people should be matched closer to their age, with younger patients getting younger kidneys. An EC kidney may only average 5 years, horrible option for a teenage recipient, possibly a welcome option to someone in their 80s.
Bill, have you thought about switching to a hospital down south? The wait is supposedly much shorter at Scripps where Karol's daughter had her transplant. I liked Cedars, but I had a different agenda with them than receiving a cadaver kidney. In the end, I was transplanted elsewhere.
For me, it comes down to not wasting a kidney that could go easily go another 50 years on someone who cannot possibly live that long. Pediatric patients should absolutely have first crack. Dialysis has lifelong consequences for kids. In the end, 18 is an arbitrary cutoff, though, and that's what all of these are going to be. It will never be 100% fair, there will always be that odd story that makes everyone gasp, but I think they need to move toward a system that takes people's age into account, without denying anyone a chance to get a transplant. I wonder, with all the innovations in PRA reduction, will they eventually drop special consideration for those people? If you manage to lower your PRA from 100 to 50, do you then lose your ranking on the list?
Maybe if I weren't so lazy and read the proposal, I'd know. This is the opinion of a middle-aged woman who may find herself back on dialysis after I have joined the ranks of the senior population. It is hard to think of other people when you're suffering, as the person in the article said, but that's why I'm doing it now when I am not suffering at all.
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How many times can a kidney be transplanted?
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Cariad, you've hit the nail on the head...that's exactly the reasoning behind the proposal, to better match kidneys using age as a "predictor" of sorts. They are trying to avoid the scenario you've outlined...an older person getting a much younger kidney that in the end will not lead to a vastly longer lifespan. This would increase the use of EC organs, so that element of the process is discussed, too.
Bill, I guess they do have different waiting list requirements from state to state. I think different regions are served by different organ procurement organizations, and maybe they establish the rules because I was told not to assume I was on the list until I got a confirmation letter with an actual listing date on it. This is something else that the proposal addresses...a need to better coordinate waitiing list protocols between states. It doesn't make sense that you can get listed the day you start dialysis but I can't get listed until all of the tests are done and the red tape is cut.
oooooh...I was just contacted by my transplant coordinator asking me if I'd be willing to be interviewed by local news. I said yes, and the transplant center's media relations lady called me back just now to tell me that the news network found someone else on the waiting list to talk to. What my coordinator had NOT told me was that the issue they wanted to discuss was this very proposal. As usual, the media has latched onto one bit of it and it now blowing it up to make everyone believe that if you are older, you're gonna be screwed. I told the media relations lady that I had actually read the document in question...I bet they wish they had found ME to interview!!! I would have gone on and on and on and on and on and on and on and on... :rofl;
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How many times can a kidney be transplanted?
That's a very good question! I don't know! I would guess that if the organ had still been functioning well and was not implicated in the recipient's death, it could be transplanted again. However, I don't know if the fact that it had been bombarded by anti-rejection meds would make it unfeasible to be re-transplanted. I hope someone comes along with a better answer because now I'm curious.
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oooooh...I was just contacted by my transplant coordinator asking me if I'd be willing to be interviewed by local news. I said yes, and the transplant center's media relations lady called me back just now to tell me that the news network found someone else on the waiting list to talk to. What my coordinator had NOT told me was that the issue they wanted to discuss was this very proposal. As usual, the media has latched onto one bit of it and it now blowing it up to make everyone believe that if you are older, you're gonna be screwed. I told the media relations lady that I had actually read the document in question...I bet they wish they had found ME to interview!!! I would have gone on and on and on and on and on and on and on and on... :rofl;
Curses! An excellent education opportunity missed, MM! :( Though who knows how they would have edited your comments to say whatever it is THEY want to say....
I think the listing from the first day of dialysis is fair, although my goal was to postpone dialysis as long as possible and my listing date was the day that the committee met at Cedars, so clearly there are different rules being implemented for people on and off dialysis. I guess in Australia, none of your time before dialysis even counts. That I have a huge problem with - some of us do not tolerate dialysis at all well and I knew my transplant needed to be preemptive for me to have a fighting chance.
Yes, there have been rare cases where a transplanted organ is retransplanted. I should think that this is pretty much the limit, though, but maybe with advancements in medicine, it could be used for even more recipients. The circumstances that allow for cadaver transplantation are fairly unusual as it is, though, so the odds that an organ would keep finding itself in different recipients who die in the proper manner are probably small. I would also wager that a kidney on it's third 'owner' would be EC.
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I'm surprised that no mention has been made of "extended" or "expanded" organs. Those are organs from an older person, say 50 or 60 years old, which they prefer not to give to a younger person due to the life-term of the organ. I'm 72 and I'm on the list for an "extended" kidney at Cedars-Sinai in Los Angeles. For my blood type, they estimate my wait at 3 to 4 years. I wish!
Also, I went on the waiting list as of the day I first started dialysis. My confirmation letter had no bearing on my start date. Maybe there are different rules in the various States?
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The waiting time date starting on your dialysis date is a pilot program in California, and maybe a few other states.
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I'm surprised that no mention has been made of "extended" or "expanded" organs. Those are organs from an older person, say 50 or 60 years old, which they prefer not to give to a younger person due to the life-term of the organ. I'm 72 and I'm on the list for an "extended" kidney at Cedars-Sinai in Los Angeles. For my blood type, they estimate my wait at 3 to 4 years. I wish!
Also, I went on the waiting list as of the day I first started dialysis. My confirmation letter had no bearing on my start date. Maybe there are different rules in the various States?
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It's sure not an option here in stupid Illinois. ::)
The waiting time date starting on your dialysis date is a pilot program in California, and maybe a few other states.
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My comment: I recall a news story in the LA Times from 5 years ago when they were considering making the changes that are STILL being discussed.
Here's the story:
latimes.com
How old is too old for a transplant?
Kidneys are scarce. Elderly patients may get fewer if rules change.
By Alan Zarembo
Times Staff Writer
November 5, 2006
DENVER
It was Monday, Shawn Stringfellow's usual night to shoot pool.
He gunned the engine of his Harley-Davidson and pulled out of the restaurant parking lot as his fiancee waved goodbye.
He was 30 years old, healthy and happily employed as a heavy-equipment mechanic. Soon, he and Kellie Highland would be married.
"I love you," she mouthed, as his black leather jacket disappeared into traffic.
With his crisp goatee and helmet-less head, Stringfellow looked like a tough biker. "If I wanted to wear a helmet, I'd ride in a car," he liked to say.
He had a soft side, though. He roared down the street wearing jeans covered with tiny hearts that Highland had scribbled in ballpoint pen during dinner.
He'd promised to be home by midnight.
Life is unpredictable. Just before 11 p.m., he finished his last beer at the pool hall and fired up the Harley. A few miles down the interstate, he drove off the side, struck a construction barrel and rolled his motorcycle.
The next day, May 7, 2002, he was on life support. His heart was still beating, but he was brain-dead.
With his family's consent, calls went out to transplant centers throughout the region. He was an ideal organ donor.
Dr. Ben Vernon, the transplant surgeon on call across town at Porter Adventist Hospital, received the news around midnight: two young kidneys -- blood type A-positive -- available in Denver.
A patient of his stood a strong chance of getting one. This man had waited a long time -- three years. To Vernon, it looked like a go.
He instructed his staff to summon the patient to the hospital. The staff also called Dr. David Gillum, another member of the transplant team.
Gillum sat up in bed and shuddered: The patient was 85 years old.
Were they serious?
What was the sense in giving such a perfect kidney to such an old man when hundreds of younger people were waiting nearby?
Exciting news
The telephone rang around midnight at 85-year-old Clois Guthrie's house on the plains northeast of Denver.
This was it, his chance. He and his wife, Nina, hurried to pack.
Guthrie, a retired osteopathic surgeon known to friends as Gus, had spent much of his life piloting small airplanes into the Colorado hinterlands to remove infected gallbladders and ruptured appendixes. He'd been a bull of a man, with a full life. He had married twice, raised three children and water-skied on Lake Powell well into his 70s.
Now, he was a full-time patient.
At a dialysis clinic 45 miles from his farm near Fort Morgan, Guthrie would slump in a padded recliner for hours, sleeping or watching other patients as the machine filtered toxins from his blood. The air always smelled of bleach, used to clean the machines.
His world had changed so quickly.
Five years earlier, he had gone to the hospital for a heart bypass and valve replacement operation. During the procedure, his kidneys began to fail.
Within a year, they were useless.
He told Nina that he would rather die than go through the misery of dialysis.
He eventually relented. He sat in his chair quietly now, like everyone else, hoping for a kidney transplant.
Unlike livers, hearts and lungs, which are aimed at the patients most likely to die without new organs, kidneys go primarily to those who have waited the longest, though genetics play a role.
It was possible to circumvent the process by getting a kidney from a relative, and Guthrie's son, wife and sister-in-law had each offered to donate one of theirs.
But Guthrie refused. "I'm not selfish enough to consider that," he told his wife.
His kidney would have to come from somebody who had died.
Two transplant centers, in Scottsdale, Ariz., and Seattle, had refused to accept him on their lists because of cancerous cells found in his prostate, even though they did not appear to be multiplying.
Porter Adventist -- the same hospital where he'd had his heart operation -- finally offered him a spot in line.
On this morning, Guthrie was third on the local waiting list, a backup behind two younger patients at other transplant centers in Denver. If either of those candidates was unavailable or unsuitable -- a common occurrence -- he would get his kidney.
Nina took the wheel of their Cadillac and raced to the hospital 100 miles away.
As the Denver lights grew closer, the couple talked about what life might be like again without dialysis -- a time they both could barely remember.
Vehemently opposed
Gillum was determined to prevent the transplant.
The kidneys could last decades if given to younger patients, the nephrologist told Vernon, the surgeon, on the phone that morning. Guthrie probably had just a few years more to live, with or without a transplant. He could die on the operating table.
It was not just unreasonable, Gillum contended, it was unethical to give a young kidney to an 85-year-old.
Vernon, who had performed hundreds of transplants, was confident that Guthrie was healthy enough to survive an operation.
He remembered a basic ethical lesson from medical school: Do what is best for the patient in front of you. Guthrie had waited his turn like everyone else. Who could know how long another recipient would live?
"You don't get to change the rules of Monopoly just because you want to play another way," Vernon said later, recalling his stance.
The doctors were at an impasse -- but only for a moment.
Vernon backed down. He didn't want strife in the program, and he figured that Guthrie, with a top spot on the hospital's list, would get another chance soon.
Guthrie was having blood drawn for pre-surgical tests when a hospital attendant opened the lab door. Without explanation, the woman said it would not be necessary to continue.
On the long drive back home, Guthrie fumed. His wife told him that the organ was probably in poor shape.
A few weeks later, the transplant team decided to remove Guthrie entirely from the waiting list. He was too old.
When Guthrie went to the hospital, it fell to Vernon to deliver the news. He kept apologizing, saying he had been outvoted.
Guthrie never stopped resenting it.
"If they had just let me have that kidney, just let me have the chance at one," his wife remembers him repeating.
Favor the young?
The Guthrie case was a fleeting moment in the long careers of two doctors.
Four years later, however, the debate over how to allocate the scarce resource of donated kidneys is unfolding on a national scale.
With little public scrutiny, transplant doctors and administrators are discussing who should receive life-extending kidneys -- and support is growing for a national system that would favor the young.
The United Network for Organ Sharing, which oversees transplantation for the federal government, has already given patients younger than 18 an advantage. Last year, it moved them to the front of the line for high-quality organs from donors younger than 35.
Now the network is drafting a kidney allocation scheme for adults, who account for more than 95% of transplants using kidneys from cadavers. A formal proposal and public hearings are expected next year. The final decision will rest with the U.S. Health Resources and Services Administration.
The reexamination is largely based on a computer analysis of data on more than 300,000 patients placed on kidney waiting lists since 1987 -- including age, race, health, body mass index, diagnosis, years on dialysis and years of survival after transplant.
The analysis shows which types of recipients should be favored in order to squeeze the maximum life out of the pool of all available kidneys.
Without a change, proponents say, the current system is headed for collapse.
Over the last decade, the number of people waiting for kidneys nationwide has more than doubled to about 68,500, as of last week. It could reach 100,000 by 2010, some researchers estimate.
The average wait now exceeds three years -- and up to seven years in the biggest cities.
The growth has been driven by older patients -- over 50, and increasingly over 65 -- who are joining the waiting list in record numbers and claiming an unprecedented share of kidneys.
The U.S. population is aging, and as transplantation becomes more routine, older people are pushing for the better quality of life it can offer. At the most extreme, a hospital in Pennsylvania recently put a kidney from a cadaver into a 90-year-old.
Even so, long before their new kidneys wear out, many older recipients die of the myriad afflictions that come with aging.
From a statistical standpoint, kidneys are being squandered.
Nearly everybody, at least up to age 70, lives longer with a transplant than with dialysis. But the young gain the most extra years of life. In the mathematics of transplantation, they have the potential for the most "net lifetime survival benefit."
Maximizing the benefit, in many respects, is a harsh calculation.
Race, weight, disease type and length of time on dialysis all count. Blacks, for example, tend to survive longer on dialysis than whites and Asians, but do less well with transplants. Obese patients tend to live longer on dialysis than normal-weight patients, but not as long with transplants.
A purely utilitarian equation would favor young, trim whites and Asians who have been on dialysis less than a year.
Nobody is arguing for that -- or any formula that would set absolute limits. Nothing has been decided, and waiting time could still be figured in.
But age, the most important factor in predicting survival, is an unavoidable consideration.
The analysts have returned to the database for a solution. In a former icehouse in Ann Arbor, Mich. -- headquarters of the Scientific Registry of Transplant Recipients -- computers are re-sifting the data, simulating how more than a dozen different formulas might play out. All factor in age.
It is a journey into controversial territory: how to balance what is best for society with what is best for the individual.
In the vast sea of numbers, one patient is imperceptible.
Each point, however, is a life.
Hospital changes rules
Guthrie never returned to Porter Hospital -- but he left a powerful legacy.
His case spurred the transplant team to examine its policy on age. In the ensuing months, it decided to make a significant change.
Patients 70 to 79 would be considered candidates for subpar organs or organs from living donors, usually relatives. Patients older than 79 would no longer be accepted.
The center was well within its rights. Although federal rules control the allocation of organs, hospitals set their own policies on whom to let on the waiting lists and whether to proceed with transplants when organs become available.
"We all felt uneasy about" the change, said Dr. Mark Dillingham, a kidney specialist at the hospital. "But it made sense to have an age limit somewhere."
Over the months, the doctors lost track of Guthrie.
His wife, Nina, watched him grow increasingly frail. His eyesight and hearing faded. She had always supported his quest for a kidney, always listened as he revisited his lost opportunity.
Privately, she wondered how much a transplant would have helped.
"I had to question in my own mind about the wisdom of giving it to an older person when a younger person could get a lot more years from it," she recalled.
For 2 1/2 more years, her husband continued the dialysis he dreaded.
In January 2005, at age 88, he died of a heart attack.
Nina, now 81, left the farm and moved into a gray brick house in the countryside southeast of Denver, just down a gravel road from her son, a commercial airline pilot.
She still thinks about the kidney sometimes.
"It's a decision I'm glad I didn't have to make," she said. "It's like playing God."
Two doctors' stances unchanged
Gillum has treated hundreds of patients since the Guthrie case, which he had nearly forgotten. But he was curious to learn what had become of the elderly man.
He nodded when he heard: The hospital's decision had been right.
Society is uncomfortable with the idea of rationing life, the doctor said recently after a long morning at a dialysis clinic.
"We haven't been very good about restricting access to the list," he said. "We have a limited supply" of organs. "And we keep letting more people enter the room to compete."
He added, "There is a point where you are going to have to make some utilitarian decisions."
It seems clear, he said, that the young should be favored.
"By age 70, you've had a full life," said Gillum, who is 54. "You've done what you need to do. You've amassed your fortune -- or not. You've raised your family."
He recalled two of his patients on dialysis.
A man in his early 20s was waiting for a kidney when he got an infection through a dialysis catheter. It spread to his heart, and he died during surgery to replace a heart valve.
A woman in her late 20s developed a sore on her arm, just over the spot where doctors joined an artery and vein to serve as a port for a dialysis needle. The sore erupted one night.
"She was found in her bed," he said. "All her blood was in her sheets."
These young deaths are the hardest for him to take.
Vernon still thinks of Guthrie.
The surgeon remembers the last time he saw the patient and his wife. It was one of the hardest things the doctor had ever had to do -- to play God for a moment.
Hearing how Guthrie died, Vernon, 52, paused. Prolonged dialysis can strain the heart. Could he have lived longer?
Just to unleash him from dialysis for those few years -- that would have been a good use of a kidney, Vernon said.
He feels strongly that individual lives can't be trusted to computer formulas.
There is no way to know which elderly transplant recipient will defy the odds and live past 90, which middle-aged patient will mysteriously reject his kidney, which young patient will stop taking his anti-rejection medicines.
Death is unpredictable. Vernon knew that lesson better than most.
In February 1978, his father, a 55-year-old pathologist and amateur pilot, flew into a blizzard. A brother and sister were passengers, as were his sister's boyfriend and another friend.
The Cessna crashed over Yoder, Colo., killing everybody on board.
Last March, Vernon, who serves on the board of the national organ transplant network, was moved to speak out.
At a meeting in Long Beach, he sliced into the dry scientific debate over kidney allocation, warning against the cold calculations of utilitarianism.
He invoked the U.S. sterilization of mental patients in the 1920s; he even mentioned the Nazis.
Supposedly scientific arguments, he said, were "used by Nazi Germany to institute some laws that now, clearly, in retrospect, were atrocities and took them down the path toward genocide."
The room was silent.
The meeting chairman, perhaps sensing the discomfort of the other doctors, said, "I don't want a response to that."
A mixed outcome
Shawn Stringfellow's kidneys went to men far younger than Guthrie.
The right one went to a 53-year-old grade school secretary from Italy. He had been at the top of the regional list.
The patient has since returned to Italy, and relatives in Colorado reported to his doctor last December that the kidney was working fine.
The left kidney went to the next patient in line, Santiago Griego, a former hospital painter. He was 51 at the time.
Suffering from diabetes, he had spent more than three years on dialysis, waiting. His body often cramped during the treatments, draining him so much that he could do nothing but sleep afterward.
He was so depressed that he told his wife, Patricia, that if he didn't get a kidney soon, he would stop dialysis and die.
His transplant, however, has not produced the results he expected.
Though most transplant patients report a better quality of life with a new organ, some, like Griego, don't anticipate ongoing health ordeals.
"I thought that once I got my kidney, I would be restored back to normal," he said.
His problems stem mostly from diabetes and have been exacerbated by his daily regimen of immunosuppressive drugs that protect his kidney from rejection.
The bones in his left leg had become brittle during his years on dialysis -- a common side effect -- and shattered shortly after his operation.
The next year, his right leg became infected through a gash in his foot. His immune system could not quell the infection. Doctors amputated the leg below the knee.
In the last couple of years, he has had at least eight cysts -- a complication from the drugs -- removed from his back, legs and groin. "If they would have explained everything that would happen to me," Griego said, "I would have turned [the kidney] down."
His solace, he said, is in his two young grandchildren who live with their mother in the spare room of his apartment.
Too weak to work, hobbling around on a cane, he lives off federal disability benefits and his wife's earnings as a saleswoman.
"Someone else gave me life," he said. "That's the only thing that stops me from giving it up."
Life without Shawn
Kellie is Kellie Stringfellow now, having taken Shawn's last name after his death.
In her apartment, his motorcycle manuals are neatly lined up next to his old albums. Kellie saved everything she could. She repaired his leather jacket. Her father restored the motorcycle, a 1995 Harley Road King.
Nobody rides it.
When she heard that both of Shawn's kidneys were still working, Kellie cried.
It was the first she had heard of them since a few weeks after Shawn's death, when a letter arrived from the Colorado organ agency saying the kidneys, along with his heart and liver, had been transplanted.
Shawn would have been pleased, she said.
On one of their first dates, the couple had pulled out their driver's licenses to compare pictures.
She noticed that they both had organ donor stickers.
He told her he didn't care who got his organs, as long as the recipients were deserving.
alan.zarembo@latimes.com
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(BEGIN TEXT OF INFOBOX)
Waiting for a kidney
The number of people nationwide on kidney waiting lists, by age group,
as of Oct. 27:
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Under 18: 748
18 to 34: 8,033
35 to 49: 20,553
50 to 64: 28,530
65 and over: 10,628
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Source: United Network for Organ Sharing
latimes.com/news/printedition/la-me-transplant5nov05,0,4061354.story
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Thank you so much...so very much...for posting that story. It has made me rethink my position somewhat and has helped me to understand the following:
1. That we lose our humanity when we let computer data do our thinking for us,
2. That we cannot surely predict who will live and who will die, when and how,
3. That we are not numbers but are, instead, real people who have hopes and dreams and responsibilites no matter their age, and
4. That we mustn't EVER allow someone's suffering to continue for ANY reason if there is a chance of relieving it.
While we are all sitting around claiming that the young should be favored, we are telling the old that they are not deserving, and I thought THAT was what we all have been wanting to avoid. Remember Aleta's husband's surgeon saying that "everyone" is deserving? Was that a lie?
You know, the problem stems from not having enough kidneys for transplantation. How do we get more people to donate? Maybe we should stop being quite so precious about all of this and at least give some thought to letting people get paid to donate. Six years has already been spent on this kidney allocation proposal; maybe they should spend six years coming up with a program that allows people to make a choice to give a kidney in exchange for financial compensation in an ethically controlled fashion. Who are the people saying that donation should remain an altruistic act? Probably not people who need kidneys. If someone doesn't want to sell a kidney, then he doesn't have to, but if someone would like to, who are we to tell him he cannot? I know, this is an old debate and it gets emotional and heated, but when you think about it, which is worse...being able to sell a kidney or having to tell people they are undeserving because they are too old?
How many millions and millions of dollars are going into the 2012 campaign? How much money do we spend on war? How much money is LeBron James making? Don't tell me we don't have enough money to set up some sort of central fund that compensates people for kidney donation!! It would be less expensive than having so many people on dialysis! But no...we are willing to play God with people's lives and forget how much they suffer from dialysis because of "ethics". We are quite happy to leave people uninsured. We are quite happy to let people go hungry. We are quite happy to let people send their children to broken schools. We are quite happy to let the rich get richer and the poor get poorer and those in the middle get screwed, but we twist ourselves into human pretzels over whether or not to allow people to sell a kidney so that a sick, suffering person might live in relative health? Somebody please tell me what I am missing! At the very least, can't we have an opt-out system of organ donation after death?
There are no guarantees. There are no guarantees that a 20 year old who receives a 20 year old kidney isn't going to die an early death; ask an insurance agent why car insurance is more expensive the younger you are. Would a kidney recipient that young be able to go to war or work in a job that was deemed "risky"? Should a young recipient not be allowed to engage in ANY risky behaviour, ie hanggliding or downhill skiing because you know, young people are going to do that sort of stuff more often that the old crones. Oh no...that kidney has to go to the "best, most deservingest recipient" because it's the kidney that's important, not the life of the person who is giving it a home. ::)
I know it is morally horrible to even TALK this way, but until we can grow host-compatible kidneys, donation is all we have, and we have an old system that is facing a new problem. I think it is entirely possible that we will get that "grow-your-own-kidney" biotechnology before we can construct a new allocation system that doesn't force people to play God.
(PS...I'll take an old banger of a kidney. I'm not fussy. I don't need "the bestest" kidney! :rofl;)
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I think the biggest problem with the proposal is that the deceased donor kidneys are mostly from young persons while patients waiting for transplants are mostly old persons. Under the new proposal, a lot more old patients would have little chance for a kidney and would end up death rather than a transplant. The survival rates of transplant patients are also race dependent and disease dependent, I am not sure these are considered under the new proposal.
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Ah, that's the article I remember that upset me so much. The last line is nauseating, but it came from a donor who probably gave very little thought to what he was saying.
I don't feel like getting back into the selling organs debate tonight. That donor was trying to be nice, basically saying he did not care who got his organ (if only he had stopped his statement there). I think you know, MM, that all of us here who are against a cash market for an organ have waited for transplants, have done time on dialysis, have read the articles and done the reasearch. Why not give a tax credit or reimbursement for expenses. I personally see nothing good coming from allowing people to sell organs the way others turn to prostitution to pay their bills or get out of a spot of trouble. This issue has been with me my entire life and no, I am not trying to play God. I am thinking of people who would be seen as the organ providers in cases of a cash market, the people who may force others into this for them, or who knows, collude with doctors to let a relative go prematurely if there were the possibility of an organ donation. Money breeds dishonesty and worse. Watch the BBC documentary on selling kidneys in Iran. It is ugly. I think we need to take it as the horrifying cautionary tale that it is.
There are no guarantees, but there certainly are odds. Let's be realistic. An 85 year old in renal failure is never, never going to last as long as I did with a transplant. The 31 year old kidney that I received would have been totally wasted on someone in their 80s.
People are *not* undeserving because they are too old! My grandfather died of liver failure, and when I asked my father 'can't he get a liver transplant' my father responded that he was too old. I think he was in his early 70s when he died - I thought that was a horrible fact to contemplate because unlike kidney failure, this was certain death. Many older patients are going to be too frail to tolerate the surgery, have too many co-morbidities, or they just don't want to be bothered with it. I say let the ones who could withstand the surgery on the list, just offer them EC or high-risk kidneys. If I were 85 I would take one of those.
My issue with this article was and will be that they put that poor patient through the trauma of thinking he was getting a transplant, then ripped it away from him. I think in the end the correct decision was made, but the way they botched it was cruel. I don't see how we are extrapolating that people who are older are less deserving from this proposal. Does it say that in there anywhere? Is there a cutoff age in those 40 pages?
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No, there is no cut-off age in the proposal, and yes, the general idea is to shift EC kidneys to older patients which I think is fair enough.
Sure, we can be realistic and use extremes to support a position. I can see where an 85 year old statistically probably won't live as long as a 20 year old, but these examples get you only so far. Statistics can guide you, but we can't abdicate our humanity and take the lazy way out and let "data" make life-and death decisions. These stats just don't provide any real answers when you are dealing with the bulk of the waiting list, which is people in mid-life or a little later.
If a patient is not well enough to endure transplantation surgery because of age or comorbidities, I have to wonder how putting this person on such a burdensome treatment as dialysis is ethical or merciful. Oh, but too many people make too much money from sticking people on D as often as possible, so I guess that's OK....
"Money breeds dishonesty and worse" is an awfully sweeping statement. I don't see why we balk at looking at a central fund run by OPTN or some such organization to reimburse people for a kidney when we DON'T balk at not spending money on health care for poor people. If you want to talk about moral hazards, let's talk about how dialysis is paid for and the very real two tiered level of care some dialysis clinics provide their private insurance vs Medicare patients. If you want to talk about an ethics problem, the whole dialysis industry is rife with those, where people can't get optimal dialysis because insurance providers and/or dialysis companies don't want to spend the money.
I'm not talking about a "cash market" for kidneys. And I'm not sure that the analogy making selling a kidney through a tightly controlled program akin to prostitution is fair.
I understand the emotion behind the debate, and it is not a subject that is pleasant to discuss. I'd be happy to see a tax credit or expense reimbursement be considered. I'd be happy to see anything that would encourage more people to donate. What does not make me happy is the hypocrisy of the entire debate. If money breeds dishonesty and worse, then we should get rid of all profit making ventures in the medical field because it is unethical to make money off of someone's incurable illness. To single out selling a kidney as unethical while the entire health industry is mired in immorality is baffling to me.
Lastly, I know it is possible that there might be some wrongdoing if people were allowed to sell their kidney, but I would hope that a good structure would be implemented to prevent that. My goodness, we already have so many hoops to jump through just to get on the waiting list; can you imagine the rigid rules that would have to be followed in order to sell your kidney? If it is true that all of the awful things could happen, well, let's spend six years making sure they CAN't happen. No system is foolproof. We know that Medicare fraud exists, but we don't dump the whole system because of it, do we? I'm sure we could come up with 1001 safeguards. All I'm saying is that in the face of the oncoming tsunami of new ESRD patients wanting a new kidney, we are going to have to do something to keep these people off dialysis because that will overwhelm our resources. We are going to have to entertain new ideas. The proposed allocation plan does nothing to increase the quantity of organs; it's akin to taking already limited resources and just moving them around a bit and tarting it up as "innovative" and "more fair". Frankly, I don't think there is any way to avoid forcing people to play God. Whenever a doctor or a transplant committee member makes any kind of value judgment, they are playing God with someone's life. Why put these people in such an untenable position when it may be possible to enlarge the pool of organs with a policy whereby a person can legally sell an organ? I don't have any answers, but I'm not sure anyone here does, either. While I recognize that this issue has not been with me my whole life like it has with other IHD members, I am one of those sick people for whom the waiting list gets longer and longer and longer and longer. The list will never get shorter in my lifetime, so my perspective is just as valid as anyone else's.
Edited to add...I respect everyone's opinion in this matter and don't really disagree with anyone, so I don't really care to comment further because nothing I'm saying is going to change anything, which is fine. Personally, I am pinning my hopes on stem cell research and am hoping that maybe new technology will come along where we can grow our own organs to replace damaged ones. One "good" thing about so many people having CKD is that scientists are furiously looking at new therapies, and I pray for the day where the whole idea of transplantation is moot. Wouldn't that be wonderful? You don't need someone to die or to risk anything for you because you can just grow and harvest your own new, healthy kidney! Like growing tomatoes! :rofl; Well, who knows? Fifty years ago, did we ever think we could have cell phones with which we could text someone on the other side of the planet? Maybe soon we can grow new organs!
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I find this subject matter quite frightening. I'm 50, I have my second transplant (in a bit of trouble and may not last) how much more dialysis without the prospect of any transplant could I face...and that some faceless person could decide I'm too old or I've lived enough life and condemn me to death ... there are plenty of things i still want to do, in particular to watch my children and grandchildren grow up.
Even though I live in the UK, given the current economic situation, particularly within the NHS ...it's a chilling thought.
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This was on ABC News last night. Follow the link below. There is an article and a video.
http://abcnews.go.com/Health/Wellness/organ-donation-younger-patients-kidneys/story?id=12992027
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Thank you all for sharing your thoughts and insights. You've got me thinking!
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Oh. My God. Just typed a response to MM and lost it. Going to have a good cry now. Will try to work up energy to respond later. :(
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Oh. My God. Just typed a response to MM and lost it. Going to have a good cry now. Will try to work up energy to respond later. :(
That's OK. Don't waste your time and energy! The whole "let's start selling kidneys" thing is off topic, and I apologize for that. That's not in the proposal we should be focusing on.
I think I am guilty of letting the media guide my thinking. It's pretty easy to condence a 40 paged document and reduce it to a scary soundbite. The whole idea is not to deprive older people of kidneys but, rather, to better match the kidneys that come available like the doc said in the above-linked video. The woman who had been waiting 15 years said that she'd rather her children have a kidney if they needed one, but of course any mother would say that. She might not be so accomodating if the kidney she had been waiting 15 years for went to a child she didn't know.
Fifteen years...what a deeply depressing thought. And that woman is in Chicago. So am I. I'm doomed.
I've had a couple of thoughts and wonder what the rest of you think. Certain IHD members, myself included, bang on about "optimal dialysis" and how standard dialysis as practiced in the US in and of itself can CAUSE enough cardiovascular damage to a patient as to make him eventually unhealthy enough to stay on the waiting list, thus dooming him to a life on dialysis forever. If we really want to be fair, we need to start BEFORE the patient gets to the waiting list; we should make sure that all patients are given dialysis in such a way that does not threaten their chances for a transplant. I know that some people are just too sick to make it that long on dialysis, but there are so many others who are kept alive by violent dialysis sessions but are also damaged with each treatment. Change the way dialysis is delivered, and more people won't die while awaiting transplantation.
The other thing that just struck me is the issue of multiple shots at transplantation. If someone judges that you are too old for a transplant because you've "lived your life" and now it is time to give someone else a chance, then does the same rationale hold true if you've already had one transplant and now it is time to give someone else a chance too? I'm waiting for just ONE chance while others have already had one, two or even three transplants. As more people are stricken with ESRD, more people are transplanted, which means more kidneys end up going to more people who have already had a transplant and the rest of those who are waiting for just ONE go are pushed further and further down the queue. I can't imagine the stress that would come if you knew that once you've had your transplant, you're done, so good luck, but on the other hand, I am now feeling the stress of what it might feel like if someone decides that being 53 means you're screwed. I've skimmed the proposal and can't offhand find any reference to how they propose to change how they deal with people who have already been transplanted but have had the graft fail, but if someone else has read it and can explain this, I'd be grateful. Again, someone has to make a value judgment and play God. :'(
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I find this subject matter quite frightening. I'm 50, I have my second transplant (in a bit of trouble and may not last) how much more dialysis without the prospect of any transplant could I face...and that some faceless person could decide I'm too old or I've lived enough life and condemn me to death ... there are plenty of things i still want to do, in particular to watch my children and grandchildren grow up.
Even though I live in the UK, given the current economic situation, particularly within the NHS ...it's a chilling thought.
Exactly. I lived in the UK for almost 20 years and am very familiar with the economic struggles of the NHS, but it is my understanding that the new "austerity program" largely bypasses the NHS. Still, I'm about the same age as you are so can really understand your fear. I think I had a nightmare about this stuff last night. ::)
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This really is the most depressing topic. :'(
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Oh. My God. Just typed a response to MM and lost it. Going to have a good cry now. Will try to work up energy to respond later. :(
That's OK. Don't waste your time and energy! The whole "let's start selling kidneys" thing is off topic, and I apologize for that. That's not in the proposal we should be focusing on.
I think I am guilty of letting the media guide my thinking. It's pretty easy to condence a 40 paged document and reduce it to a scary soundbite. The whole idea is not to deprive older people of kidneys but, rather, to better match the kidneys that come available like the doc said in the above-linked video. The woman who had been waiting 15 years said that she'd rather her children have a kidney if they needed one, but of course any mother would say that. She might not be so accomodating if the kidney she had been waiting 15 years for went to a child she didn't know.
Fifteen years...what a deeply depressing thought. And that woman is in Chicago. So am I. I'm doomed.
I've had a couple of thoughts and wonder what the rest of you think. Certain IHD members, myself included, bang on about "optimal dialysis" and how standard dialysis as practiced in the US in and of itself can CAUSE enough cardiovascular damage to a patient as to make him eventually unhealthy enough to stay on the waiting list, thus dooming him to a life on dialysis forever. If we really want to be fair, we need to start BEFORE the patient gets to the waiting list; we should make sure that all patients are given dialysis in such a way that does not threaten their chances for a transplant. I know that some people are just too sick to make it that long on dialysis, but there are so many others who are kept alive by violent dialysis sessions but are also damaged with each treatment. Change the way dialysis is delivered, and more people won't die while awaiting transplantation.
The other thing that just struck me is the issue of multiple shots at transplantation. If someone judges that you are too old for a transplant because you've "lived your life" and now it is time to give someone else a chance, then does the same rationale hold true if you've already had one transplant and now it is time to give someone else a chance too? I'm waiting for just ONE chance while others have already had one, two or even three transplants. As more people are stricken with ESRD, more people are transplanted, which means more kidneys end up going to more people who have already had a transplant and the rest of those who are waiting for just ONE go are pushed further and further down the queue. I can't imagine the stress that would come if you knew that once you've had your transplant, you're done, so good luck, but on the other hand, I am now feeling the stress of what it might feel like if someone decides that being 53 means you're screwed. I've skimmed the proposal and can't offhand find any reference to how they propose to change how they deal with people who have already been transplanted but have had the graft fail, but if someone else has read it and can explain this, I'd be grateful. Again, someone has to make a value judgment and play God. :'(
I am really confused. Sorry, but did some people just start commenting without reading the article? This has nothing to do with any sort of death panel. As MM said, it is NOT there. I would like to hear people's thoughts on the actual proposal.
Why should it matter how many transplants you've had already? Most of the time, it is out of the person's control how long the transplant lasts - it depends on how you tolerate the drugs, what condition you have that led to renal failure at the start, financial situation, the strength of the match, living or deceased donor, etc. Innovations in transplant and drug therapies, which were not around when I was a child, have allowed people to keep transplants longer. Under that system, people like me, monrein, Chris, and anyone else who saw their kidneys fail at a young age would clearly be discriminated against. And don't tell me that is what this proposal is doing. If, heaven forbid, my kidney fails at age 70, I will queue up with everyone else and accept my 55 to 85 year old kidney. Or I'll just take my chances with dialysis. Or I'll get one of the new medical technologies and marvel that we ever worried about this.
By the way, responding to MMs earlier post, I have always said I want to see socialized medicine in America. The poor are discriminated against in our medical system every day. You should not have to be wealthy to have good health. So I see no contradiction in my distaste for selling organs. Then again, it sounds to me like we agree anyhow. However, I don't see that reimbursement and tax breaks (which already exist) are going to increase the donor pool. Opt out would. Cash markets would create an underclass, with brokers operating similar to pimps. It's all selling bodies when you want to make a buck. I also don't get the paranoia toward opt-out but some of those people want to see cash for organs?? If the potential for fraud were just about money, I wouldn't like it but it wouldn't bother me as much. Paying living people for organs opens up a world of exploitation possibilities. That's the condensed version of what I wanted to say.
MM, you stated that we shouldn't look at odds of future lifespan based on age, well then you cannot do that with a kidney, either. There will be times that the 65 year old kidney will outlast the 25 year old one. Either you believe in that calculus or you don't, and if you do, I think the proposal makes sense, if you don't, then why be bothered by it? The older person will get the better kidney on plenty of occasions!
Sugarlump, being denied a kidney transplant is not necessarily a death sentence as many people here have proved. Under this proposal, you would be offered first crack at kidneys between the ages of 35 and 65, with the range going up a year with your age. It is not like your kidneys are great at 35 and suddenly turn into a gopping mess at 36. People in their 50s would do fine under this proposal. Transplant is not a panacea. I cannot stress this enough. Yes, I have done well with it, others have seen their lives destroyed or died from it. Summary of the woman who had Harvard's first stem cell/kidney transplant: transplanted at 12, in a wheelchair by 18, taken off rejection drugs that were killing her, rejected the kidney. Refusing to give someone a transplant, while in my opinion still awful, is not condemning anyone to die. (OK, there may be rare instances....)
Does anyone have any criticisms of the proposal? I am interested to hear if I am missing something. I am not exactly young, and I think this proposal would work.
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I would Faaaaar rather see an "opt out" system than a system whereby you can sell a kidney, and I think there should be a much bigger push in that direction. But whenever an opt out system is proposed, people start yelling about how the government shouldn't make us do anything, blahblahblah, and I don't think Americans will EVER accept this. Does anyone know if any individual state has an opt out system? Maybe if we tackle this on a state level, some small progress might be made.
Why should it matter how many transplants you've already had? Well, it shouldn't, but again, we are talking about scarce resources (cadaveric kidneys). It shouldn't matter if you are young or old or live in Chicago or live in Wyoming, but it does. The average waiting time for a kidney in Chicago is 6 years, and in Wyoming, it is six months, and the proposal is attempting to address that discrepancy. If you are happy to get an EC kidney for your second or third or fourth transplant, that might be fine with you but it might not be with another patient. Who gets to decide what is fair? If you are 40 years old and need a second transplant, should you be automatically shifted to the EC list because you've already had one transplant? I don't know...I'm just musing. But I have to admit that I wonder how one person can get more than one kidney while this poor woman has been waiting 15 years. Of course, it's a moot point if that second kidney is directed to the patient from his/her donor, but is it fair that one person gets more than one cadaveric kidney while others are waiting 10-15 years, people who also have no control over their disease? What a horrible thing to have to decide.
And yes, you are right in saying that a 65 year old cadaveric kidney might work longer than one that is half that age. The proposal also addresses that point.
I think the proposal would work well enough, but it still doesn't address the central issue which is lack of organs. However, I am not sure I like any proposal that favours any one group over any other. And I don't like being viewed as a statistic and nothing more by people whose kidneys aren't failing. But that is part of having a chronic illness, I guess; you're just swept away by the views and practices of people with better health and more power, and your life ceases to be under a modicum of your control, and your treatment is dictated by money and big industry and by people who think they are so marvellously wise that they have the right to decide if you are deserving of anything at all.
(Cariad, in my previous post, I was just commenting on the video from the link provided by Hazmat. No one was talking about death panels. Sorry if I confused anyone.)
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MM, I'm just confused in general, so please don't take it personally! No one's fault.
I really don't get how this proposal favours one group over another, except pediatric patients and from a former pediatric patient who made it out alive, those kids need to be given special consideration. Dialysis is much harder on children, it stops their development. It may sound extreme to compare an 85 year old to a child, but my life experience is such that I *was* that child at one point, and in the article the man was 85. We cannot pretend that there is not some difference between these two populations. What 85 year old really thinks they should be given the kidney of a 30 year old? It doesn't make sense. I definitely see the postcode lottery that you mention. The wealthy are favoured, but what else is new in America? With hospitals having varying wait times, the wealthy can afford to go to the shortest wait, the working class probably won't be able to do that. Steve Jobs worked that system, and he gets more time now. I don't understand how people are not matched by medical status. You cannot even get on the list if there is some issue with that, at least not usually. Are they saying they would mindlessly transplant a 20-year-olds organs into a 65-year-old?? Sorry, but that is lunacy. Also, with HepC patients, they already will only offer them kidneys from other Hep C patients, at least that's what I've heard from people. It may not seem fair, but maybe HepC is one the most unfair things in the world, and unfair things are sadly part of life. Was it fair that I lost my kidneys before anyone knew what they were doing? Do I spend a lot of time raging against events that cannot be changed and that all turned out all right in the end? (Probably not and definitely not, respectively.)
I really don't see the correlation between people who have had transplants before and age matching in allocation. It is not a privilege to get a kidney as a child, it is a medical emergency and a full-on horror show. Does anyone who knows anything about transplant really think "Oh, that organ hog, she's on her fourth transplant and she's only 30!"? I think most people would think how awful it is that someone would need to go through so much so young. It really doesn't matter if someone else wouldn't want an EC kidney, if they are in their 70s, perhaps it is time to admit to oneself that a kidney around your own age would be a pretty fair offer. EC can be just a label - perhaps it will last for 20 years, no one can tell. They still have that shot, and they will likely get the call much earlier than if they insisted on a pristine kidney. At 70, I imagine my position would be get me off dialysis as soon as possible, and I will make the most of the transplant. I don't know why 70 year olds would consider it discrimination to not be offered a 19-year-olds kidney. I don't get it. I wouldn't be offered one either under this system, but that's fine. I would want that kidney to go to a four-year-old. I really would.
Hope I don't sound angry. I'm not. I am just trying to understand what the issue is, how this is unfair to older people? :sos;
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No one is suggesting that children no longer should be favoured. They are favoured now, and no one is suggesting that should be changed, and no one is suggesting that it is a good use of a 12 year old kidney to be given to an 85 year old instead of to a 12 year old.
The proposal will pass and everything will be wonderful. Nothing in life is fair, so I applaud the efforts of anyone who tries to make it so. There will be winners and losers in this, as in any protocol that changes, and people will live and die just like they did yesterday and today, and nothing much will really change.
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As a friend of mine said, the article that should be written is "Kidneys Rapidly Going to Disproportionately More and More Older Recipients, Trend Worsening Unless Checked!" but that's the truth, and the media doesn't find that titillating enough.
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So true! I shared the article on my FB page and ALL of the responses I got were anti- Health Care Reform comments. Obviously, my friends read the title and not the article and jumped right where the media wanted them to - "See, death panels are here!" :Kit n Stik; Bolderdash!!!!!
I like your friends headline - much more accurate!
I LOVE using the little animations, by the way!
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Thanks, Karol. An important point to keep in mind.
I will try to read the proposal and comment before the deadline. I suspect that it will all be a waste of time, though. I think there will be such huge medical advancements that by the time they were to implement these changes, we'll be well on our way to saying "Who needs cadaveric donation anymore? There's a better way!" Fingers crossed.
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I will try to read the proposal and comment before the deadline. I suspect that it will all be a waste of time, though. I think there will be such huge medical advancements that by the time they were to implement these changes, we'll be well on our way to saying "Who needs cadaveric donation anymore? There's a better way!" Fingers crossed.
That's what I'm hoping!! Technology moves faster than bureaucracy!
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I have a question,
Is the old system broken ? It seems to have worked so far . Why fix what works or God forbid is theis the start of
the Obama care revolution ?
When dining out the ask for your name to be put on the list , not how hungry you are .
When giving out food at a food bank do they say well , you are older so you dont need as much ?
They leave well enough alone. I will take the time to read the full measure and being in Richmond they will
be able to heaqr me !
BECAUSE I AM KATONSDAD
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KATONSDAD, the new proposal has been in the works for at least 6 years, so it doesn't have anything to do with Obama, nor did it have anything to do with ex-President Bush.
http://optn.transplant.hrsa.gov/kars.asp
You can follow this link for answers to your question. From there, you can follow another link to the actual document, the beginning of which is pretty good about explaining why they are looking to refine the allocation policy.
The system isn't broken, per se, but with more and more people on the waiting list, it is felt that the age of the donor organ should more closely match the age of the recipient. But this is a simplistic explanation. For more info, do read the document. It's quite interesting.
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The information that is being piut out there is scaring a lot of people ......Along with family members.
If a person is 60 or 70 ,whatever age they have just as much of a "right" to treatment as the next person.
Seems the Kidney professionals are looking for a way to say , nope your to old for this
Below is there wording on how to submit a comment ,,,,,Notice the prefer email with a document attachment
or fax . They do not want to see faces., They want a Plain piece of paper looking back at them not a face.
Makes them feel better that way .
Sorry for the RANT but this subject hits to close to home
How to Submit Feedback
The preferred method for submission is by e-mail to kidneypolicy@unos.org. Attachments are permitted in the following formats only: .pdf, .doc, .txt. Please note, e-mail addresses will not be shared with Committee members; only information contained in the subject line and body of the e-mail will be shared. Please do not include identifying information in the e-mail subject line, body or attachments as this information will not be removed prior to review.
For those without internet access, responses may be faxed to 804-782-4896 (attention: Kidney Transplantation Committee Liaison), or mailed to:
Attention: Kidney Transplantation Committee Liaison
United Network for Organ Sharing
700 N 4th Street
Richmond, VA 23219
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I've read it, well most of it scanned the rest.
I'm for it. If I'm reading it right the main focus is to improve the longevity of a transplant by doing better matching. And, statistically at least, there will be an increase in the average longevity of a transplant. With a scarce commodity this is a welcome development.
So the unemotional, engineer in me says yes its a good thing.
The emotional also agrees. Yes it does favor children. But what kind of society would we be if we didn't put our children first? Especially our sick children. The way I look at it if I'm on a sinking boat and not enough room on the life boats for everyone, there is no way I'd be on one of those life boats if there were still children on the ship.
For someone who seen it from both sides. A child who needed a transplant of most likely will need another at an older age. The new system gives me a great deal of comfort. Under the present system I'm not so sure I would go on the list since I would not want to deny child the chance I had. But how can I be sure that a child would get the kidney I did not? With the new system I'm more assured.
Bill
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I am more for this than against this. I actually brought this up to the transplant surgeon during my eval appointment. Come to find out this topic is his baby, and he has worked extensively on it. He told me how much it killed him to have to put in a 16 yr old cadaver kidney into an 80+ yr old patient, who was next on the list. He fought it, but lost in the end. I think it is an absolute waste to give such a precious gift to someone who is that old. I think doing that is a slap in the face to the donor's family, who I can only assume would want their son/daughter's organs to go to someone younger and who will be able to use them for as long as possible. I think it is only fair to try and age match when it makes sense. Younger patients should get younger kidneys, to lessen the chance that they'll need additional transplants sooner as their lives go on. In the end, it works out better for all of us who need to spend time on the list. Yes, I know that younger patients tend to be careless with taking their meds, that is also something this same surgeon talked about. I don't know the answer to that. But giving a young, healthy kidney to someone who is elderly and has already lived life just isn't right, no matter what way you look at it. That's my :twocents;
KarenInWA
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Moosemom and Cariad I love reading your responses! Glad we can voice our opinions and not feel like someone will attack us if we do...I will finish reading this and post later!
xo,
R
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I don't follow what you're saying, Katsonsdad. This hits close to home for almost all of us here. There is nothing in the proposal that says that people over a certain age have no right to a transplant. No idea what Obama could possibly have to do with this and not sure why you brought him up except as an excuse to bash him.
Could people please read the article and comments at a minimum before they post? MM has read the proposal, so at the very least I would read her comments because she mentions what is and what is not in the proposal.
Karen, a 16-year-old kidney going to someone in their 80s? That should upset all of us. It looks bad for donation as well. That kidney could last someone 30-40 years, if not longer. Why would they do that? It sounds like this proposal is long overdue but I will certainly be back to post if I find anything worrying in it.
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The proposal is well thought out though it IS long; still, it is not that complicated although there are a lot of numbers, percentages and graphs.
When you read it, keep in mind several things;
1. This is not an attempt to do away with the waiting list entirely.
2. This IS and attempt to better match a donor kidney with an appropriate recipient.
3. Very young patients still have priority.
4. The emphasis is more on examining the merits of the kidney itself, not so much the donor as hyped. It is not about giving more kidneys to younger patients, rather, it is about giving better kidneys to healthier patients who would expect to get the most years out of it. Ironically, if it so happens that in any given year, there are more older donor kidneys available, then more older recipients would get them. Hypothetically, if this year most of the cadaveric kidneys through some weird happenstance came from donors aged 45-60, then recipients aged 30-75 would get those kidneys (using the =/- 15 year template explained in the proposal). In this instance, 20-25 year old patients would lose out even if they had been on the waitiing list a bit longer.
The proposal explains that only 20% of available cadaveric kidneys meet the "pristine" designation (my word, not theirs) that would go to younger patients.
Age is not the only criterion by which these decisions will be made. Overall health of the recipient is also considered (ie, their "diabetic status") along with other criteria. But again, the emphasis is on the health of the donated organ. Once that health status has been determined (and the proposal explains this as the KDPI, I think it is called...pretty sure that's it...you'll see it in the document because they bang on a long time about it!), then the allocation process really begins.
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This topic has made me think long and hard not just about my current situation but about the whole kidney donation thing as well, that I decided to do a bit of research and see how the UK list is currently managed.
As far as I can tell,
Young patients (0-19) are already given priority and some priority to younger adults (20-25).
Patients over the age of 65 are at some disadvantage from this weighting BUT there is no official upper age limit.
First priority is tissue match.
Second priority is youngest recipient
Third priority is longest time on dialysis
The agreed criteria is that the transplant has to have a likely success rate for two years minimum.
The best tissue match will always carry the highest weighting because this has the greatest chance of success and graft life.
I'm not sure there ever should be defined age limits/ or restrictions on numbers of transplants. Everyone's situation is personal and different.
Only a doctor who knows the individual patient can asess how fit the patient is and how likely a success a transplant would be.
Basic statistics never reveal the things that make the real difference, how sick the patient is already, how likely they are to comply with medication (still the most common reason for graft failure) and the health of each kidney transplanted.
From personal experience, I don't think you could ever limit someone to 1 transplant as circumstances beyond their control could cause the
kidney to fail pretty quickly. In my case, 3 months (of which 2 spent recovering from transplant) would be pretty cruel. If my current (second) transplant does fail I would think seriously before going back on the list but would want this to be a discussion between me and my doc, not some man in a suit in an office that had never met me. I don't know if my current transplant was a marginal organ, I do know it was from a 60 year old and that it was a near perfect match. A gift I accepted as a chance of a better life and hope it succeeds. If I ever get the chance to donate any of my organs, I don't really mind who gets them, to help anybody rather than take them to heaven will be just fine with me.
Recent improvements in keeping transplants functioning/ better drug regimes can only help the situation where numbers on the list far outweighs the number of kidneys available. Although the number of people on UK kidney transplant list actually fell last year for the first time.
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I agree there shouldn't be an age/number of tx limit. A 40 year old may have multiple co-morbidities while a 60 year old may be far healthier.
I think the biggest difference between what happens in the UK and what the new proposal here outlines is the way the donor organ is evaluated. Tissue match is just one criterion. Condition of the ORGAN would be the main determinant, not necessarily the age of the recipient. If the next donor organ to become available was 45 years old, if the recipient at the top of the list was only 25 years old but the second placed recipient was 50, the older recipient would get the organ because the condition of the organ would probably most closely match the condition and life expectancy of the 50 year old (assuming all other things were equal).
Interesting to hear what happens in the UK and important for you to know! Thanks for posting that.
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I am in favor of strong preferences for young adults, especially for primary transplants. We are talking an additional point or two if the donor is within 15 years of the recipient. It won't really matter unless there is a three way HLA tie for the kidneys in that particular region or center.
Doesn't UNOS "track" high quality kidneys and give points to a network that is paying in more organs to help them receive the same quality?
I also think the developments in living donor exchanges will decrease the dependence on cadaver kidneys for the younger population. My husband's parents were ABO incompatible and there was not an option to trade in 1995.
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In the UK they do not disclose the quality of the transplant organ which means you might be fighting to save an organ that has little hope of winning the battle though also knowing you have a marginal kidney might make it even more stressful.
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There are people who do not deserve an organ transplant. Specifically, anyone who would insist on taking their own organs to the grave should not be eligible for a transplant. The Israelis got this one right. They are currently asking all Israelis to register as organ donors by a specific date (I believe it is sometime in 2012). Those who fail to register are ineligible for an organ transplant. If someone registers subsequently they are then required to wait a prescribed period of years before they are eligible.
It is time that we recognized, in some meaningful way, that refusing to be an organ donor results in hardship and death. If an individual will not let his or her organs be used to save lives, he or she is undeserving of being saved.
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I have such mixed emotions. Of course, I want the younger ones to get transplants and live long productive lifes. But, no one wants to look death in the face and know time is limited. The first 4 years on the list, I didn't sign up for extended criteria. But, the reality of my situation made me know that was the better chance for me. August 31, 2010 was a very long day -- from 7:30 am until 10pm waiting and waiting. I knew there were 5 of us in the ER being evaluted - all hard to match patients. I also knew that one was a lady in her late 20's. It wasn't hard to figure out who was there for the transplant. I said from the beginning - I hope it is hers. She needs it more than me. But, it all just doesn't work out that simply. It will always come down to the match. Me, with 100% PRA, was a match. I was told it was from a donor with high blood pressure, so I knew it wasn't perfect, but it was perfect for me. Many here know how much I dealt with guilt. It will be interesting in 5 - 10 years to see how this actually pans out. What is the proposal for those who need a second or third transplant? Obviously, the patient would be older by then, so would they eventually not be eligable? Oh, what an emotional subject this is. :stressed;
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Luckily there are living donors or this would be an even bigger nightmare.
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Going through the proposal,I think many posts in this topic missed an important point under this proposal. The proposal has two major features: (1) youth patients get better kidneys and (2) waiting times decrease greatly with youth patients and increase greatly for old patients. Sure, there is no age cutoff. But if you are 60 years old and your waiting time increases from current 5 years to more than 10 years, you are effectively cutoff from receiving any kidneys. Under the proposal, anyone older than 50 will see the waiting time increase. Worse, for old patients, longer you wait, less kidneys are available to you and you have to wait even longer. Even patients older than 45 could be affected because you need to add waiting time to your age to see how many kidneys are available to you. The -15 years and +15 years does not adequately address the fairness issue. It may need -5 years to +25 or +30 years to make waiting times not much dependent on age. The proposal hid the second feature.
Here are the donor ages and patient ages:
Age Donors (%) Waiting list (%)
1-17 Years 16.51 0.84
18-34 Years 29.46 10.20
35-49 Years 25.60 27.36
50-64 Years 22.33 43.07
65 + 6.10 18.52
50+ 28.43 61.59
Total persons 7248 93637
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Interesting and poignant fact that 61.5 % of the waiting list are 50 years plus and this is the category that will feel the effect of the changes most.
Don't get old ...
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I'm not sure your conclusions are accurate, Jie. As our population ages, there would probably be more organs available for older patients, actually.
Page 32 of the proposal is interesting as that's where it addresses how to increase the number of organs that can be transplanted. It points out that some transplant centers discard EC kidneys because they don't want their success rate evaluation to be adversely affected, thus reducing their CMS reimbursement. The Committee looked at data compiled by the Eurotransplant Senior Programme and found that they discarded significantly fewer kidneys, and this proposal could incorporate some of those ideas to enlarge the donor pool. THAT's at the center of the solution...don't just reallocate but also allow for more kidneys to be available.
Of course, if the US would implement an opt-out program, that would help. The allocation proposal assumes that there are no changes in donation policy. If there WERE to be such a change, then this whole proposal might become irrelevant.
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Actually, the proposal mentions that old patients increased sharply over time. If the trend continues, the impacts on old patients are worse than my conclusions. The auto accidents involve youth persons a lot more than the old persons. One study is needed to examine the median waiting times for different age groups under the proposal. It seems the committee does not want the public to know the changes in waiting times for different age groups under the proposal. I found some quotes of the committee members in some reports are misleading in term of opportunity of kidneys available to old patients, such as this:
"Dr. John Friedewald of the Northwestern University School of Medicine, who is vice chairman of UNOS's Kidney Transplantation Committee, said the organizations had been working for more than six years to make sure the concept wouldn't reduce anyone's opportunity to receive a kidney, including an older or sicker patient."
It does not take much education to figure out the impacts on old patients by looking at the donor ages and patient ages. Dr. Friedewald should know better than giving out such a misleading statement!
Whether the discarded EC kidneys can make up the difference is still a big question mark. There is always a reason for a kidney to be discarded. By memory, about 90% of kidneys are used in my area.
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Here's a follow up interview with guests on NPR http://ihatedialysis.com/forum/index.php?topic=22178.0