Under kidney transplant proposal, younger patients would get the best organs

[okarol]

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

[Chris]

Not sure I like this idea.
 

[MooseMom]

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.

[Henry P Snicklesnorter]

.

[MooseMom]

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.

[BillSharp]

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

[Henry P Snicklesnorter]

.

[cariad]

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.

[paul.karen]

How many times can a kidney be transplanted?

[MooseMom]

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...

[MooseMom]

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.

[cariad]

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...

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.

[okarol]

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?
 

The waiting time date starting on your dialysis date is a pilot program in California, and maybe a few other states.

[MooseMom]

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?
 

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.

[okarol]

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

*

(BEGIN TEXT OF INFOBOX)

Waiting for a kidney

The number of people nationwide on kidney waiting lists, by age group,

as of Oct. 27:

---

Under 18: 748

18 to 34: 8,033

35 to 49: 20,553

50 to 64: 28,530

65 and over: 10,628

---

Source: United Network for Organ Sharing

latimes.com/news/printedition/la-me-transplant5nov05,0,4061354.story

[MooseMom]

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! )

[Jie]

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.

[cariad]

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?

[MooseMom]

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!   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!

[Sugarlump]

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.

[Hazmat35]

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

[WishIKnew]

Thank you all for sharing your thoughts and insights.  You've got me thinking!

[cariad]

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.

[MooseMom]

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.

[MooseMom]

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.