New rules change who gets donated kidneys

New rules change who gets donated kidneys

55 comments by John Faherty - Nov. 8, 2009 12:00 AM
The Arizona Republic

Rachael Ramirez sits in a reclining chair and watches her blood leave her body through a tube in her chest.

A circular pump pulls the blood from her, cleans it and then pushes it back.

Ramirez's kidneys used to do this for her, but now they cannot.

She needs a new kidney, preferably one that will last her whole life.

Her name is on a list, but when a donated kidney finally comes, it may not be ideal.

Only 21, she might receive a kidney that is decades older than she is.

And the person next in line, who might be 60, could receive an organ from someone Ramirez's age.

Five years ago, the federal government ordered UNOS, the agency that sets policy for organ donation, to find a way to end the mismatch and get more life out of these precious donations.

Changes are certain.

The new system will determine which kidneys are the best and consider which patients would benefit most from them.

The old transplant system was built on the question of who could get the next kidney.

Soon the question will be: Who should get it?

A 'broken' system

Dr. Kenneth Andreoni, chairman of the United Network for Organ Sharing Kidney Transplantation Committee, has been working to develop a better way to distribute kidneys since 2004.

"The current allocation system went in decades ago," Andreoni said. "It was based on good science, but it was a different time."

The system was built to balance utility with fairness.

For utility, doctors required that donated kidneys and recipients be a close biological match. It was the only way to ensure that the recipient's body wouldn't reject the organ, wasting a precious donation.

For fairness, they established a waiting list. The people on the list the longest were first in line for the next matching kidney.

But in the 1980s and 1990s, things began to change. Better anti-rejection drugs helped a recipient accept a kidney even if they weren't a perfect match. Before long, the allocation system that was supposed to balance utility - the likelihood of a successful transplant - with fairness - time on the waiting list - was out of whack.

All that mattered was the wait time.

Frustration grew among transplant doctors. Without the criteria of a tissue match, the system was no longer using science to make the best choices.

Doctors were sometimes putting healthy young kidneys into recipients with only a few years left to live.

"What's most broken is the extremes," Andreoni said. "Kidneys with the longest estimated survival, like a 20-year-old's, going into somebody who is going to live two, three, five years." The other extreme is a kidney from an older donor going into a young recipient; the organ is likely to fail sooner, putting the patient back in dialysis.

The UNOS Kidney Transplantation Committee performed a full review of the system for allocating kidneys and decided parts of it were broken.

First, committee members said, the system overemphasizes wait time.

More important, they found that kidneys with "long projected post-transplant survival are allocated to candidates with expected short-transplant survival."

The rules, current or future, apply only to kidneys taken from a deceased person who has agreed to donate his or her organs. About half of patients with kidney failure receive a donated organ in other ways: from a spouse, a relative or friend, a benevolent volunteer.

The committee is recommending at least two key elements that are almost certain to be part of the new system.

• The first is dialysis time. The current waiting-list system is less fair than it seems, Andreoni said, because some doctors list patients early, at the first sign of kidney failure, while other doctors wait until after other treatments to list their patients. This puts patients in the second group at a disadvantage.

A dialysis-time list would put all patients on equal footing. The longer you have had to endure the treatment, the sooner you can get a kidney.

• The second element is a complex grading system called the Donor Profile Index. Doctors would measure the quality of a donated kidney to determine how well it will work and how long it will last. Then, they would give that kidney to the patient who would most benefit from it.

That means factoring, to a still-undetermined degree, who would get the most use of a new kidney - who would live the longest.

"Right now, whoever is next in line gets the kidney," Andreoni said. "It does not make the best use of the organ."

'A conundrum'

Ramirez is not close to the front of the line. She has been on the wait-list for only months. She originally thought she would get a kidney from her mother, but doctors later said it would not work, a development Ramirez calls "heartbreaking."

Sometimes, during the hours on dialysis, she remembers how quickly she went from a healthy life to one that is not.

On a Monday in September last year, she started to feel sick. On Tuesday, she left work early. On Wednesday, she stayed in bed all day. On Thursday, she went to the doctor.

"My kidneys were dead," Ramirez said. "End-stage renal failure. Stage 5. I have no kidney function."

Ramirez has hemolytic-uremic syndrome, which can severely damage the kidneys, shutting them down quickly.

She had been preparing to move out of her mother's house in Phoenix. She was about to begin classes at Arizona State University. She even had the ASU parking sticker on her car.

Now, her time and energy are devoted almost exclusively to dialysis. She will go three days a week, every week, for as long as she has to wait for a kidney.

Kidney dialysis can rightly be called a medical miracle. A machine does what the body cannot and keeps a patient alive.

But it is very difficult on the patient.

"It's so tiring; it feels like your entire body is being wrung out like an old rag," Ramirez said.

After 90 minutes, halfway through her session, Ramirez's face is visibly thinner. The fluids and toxins are leaving her body. After dialysis, Ramirez will go home, climb into bed and fall asleep. The next day, she'll feel better. The next, she'll be tired again; fluid is building up, and she's due for dialysis once more.

She is living, she said, on four days a week.

With the proposed changes to the allocation system, a patient like Ramirez will be more likely to receive a kidney from a younger person, and probably sooner.

"It's a conundrum. A change would be a really good thing for me," she said. "But if I was older, I might be angry. Maybe they have been waiting for a long time."

She admits to wanting the best possible kidney.

"I'm young. I'm 21. I have my life to live. I will help the world more," she said. "Part of me does feel guilty to say that. It would feel like I cut in line. But I will live a good life."

Kidney-quality issues

Dr. David Mulligan has been performing transplants for 15 years and knows as well as anybody the miracle of a donated kidney.

That's why, he said, he believes changes to the system are necessary.

The chairman of the division of transplant surgery at the Mayo Clinic Hospital in Phoenix, Mulligan thinks all patients will be better served - not just the younger ones who would get better organs.

Older patients could benefit too, he said. If the system acknowledges that older people don't need the organs to last as long, the criteria for acceptable kidneys could be broadened. That would alleviate the shortage.

Right now, that shortage is critical. As of October, 82,385 people were on the waiting list for a kidney in the country. Of those, 1,363 were in Arizona.

In 2008, only 16,520 people in the country received a transplant, according to UNOS.

In lay terms, kidneys can be categorized as "good" and "not as good," with the understanding that even lesser kidneys are good enough.

"If you can give a 75-year-old with diabetes
a kidney that's 'not as good,' you are providing a real life benefit to him," Mulligan said. "He will not make it on dialysis."

Older patients, Mulligan said, should not be concerned about receiving older organs.

"It's the old beater; it's good enough," Mulligan said. "It will be fine to do anything that a 75-year-old needs to do."

Statistics show donated kidneys tend to come from younger people. They're simply more likely to die a sudden death. But now donors are beginning to age. That means more kidneys for older recipients down the line, Mulligan said.

Still, in a system that would match donor age with recipient age, older patients on the transplant list might be cut off from a large portion of the healthiest kidneys. That gives them reason to worry.

'Playing God'?

Diana Childs, 63, has been waiting for a new kidney for 18 months.

Every time her phone rings, there is a chance she could be getting the call she's been waiting for.

"Oh, I get excited," she said. "When that cellphone rings, I get excited."

After living with diabetes for nearly 40 years, her kidneys no longer work. She takes her dialysis every night at home while she sleeps.

Childs, an administrative assistant, is the mother of two adult children. She lives with her longtime partner, Bob Dudek.

She wears a bracelet that spells "Vette" in rhinestones as a testimony to their love of his car.

She hopes for a transplant and good health. She is looking forward to retirement and some of life's simple pleasures such as bowling and needlepoint. She is eager to spend more time with her three grandchildren.

"I pray for her every night," Dudek said.

At this point, Childs is willing to take any organ that's "good enough."

She hopes to receive a transplant of both a kidney and a pancreas, which would cure her diabetes.

"I would be happy with any kidney or pancreas at this point," she said. Still, she said, "I would like the best possible organ."

Because Childs is already waiting, and because any new allocation policies are not going to be in place for some time, she is not likely to be affected by any UNOS changes.

But sitting at her kitchen table, drinking coffee in her Mesa home, she worries about the change. Someone else deciding who gets a better kidney, who gets a lesser one?

"It's like, in a manner of speaking, they are playing God," she said.

That's the issue transplant doctors are facing. They will measure the quality of an organ based on scientific factors. But by using that measure to decide who gets the organ, they open the door to deciding whose life is worth more.

A scarce resource

Dr. Michael Shapiro, the chief of transplantation at Hackensack University Medical Center in New Jersey and chairman of the UNOS ethics committee, is talking about a hypothetical patient.

"A 75-year-old with terrible arthritis is sitting in a wheelchair. He can't play golf or play with his grandkids," Shapiro said. "But we can give him an artificial hip, and now he can play with his grandkids. And six months later, he dies on the 18th hole of a Scottsdale golf course. Nobody would say, 'We wasted a hip.' "

But kidneys are different, and that is Shapiro's point. We can make as many artificial hips as we need. We can't make kidneys.

So, for Shapiro, maximizing the gift of a kidney only makes sense.

"The current system does not get the right kidney to the right patient," he said. "We are allocating kidneys like a deli. Take a number and get in line."

Developing a new allocation policy is a slow process.

Doctors and scientists develop possible methods. Then there is statistical modeling to see if they might work. Then there is public review.

After five years of trying to develop a new allocation policy, the Kidney Transplantation Committee is still months, if not years, from presenting a plan to the UNOS board of directors.

There is consensus on some things. The extreme ends of the kidney exchange - from the very old to the very young or vice versa - will be eliminated. The policy also will include some measure of what is the best use of a particular kidney in order to boost the average number of years of life gained.

"People think we are devaluing an older person's life by suggesting we put a younger kidney into a younger person," he said. "My response to that is that we are rationing a scarce resource."

Until there are enough kidneys for all who need one, Shapiro said it is incumbent upon the medical community to get the most out of that organ.

"The current system does not get the right kidney to the right patient. Don't we have an obligation to maximize the gift of the kidney? To honor the gift of the donor?"

http://www.azcentral.com/news/articles/2009/11/08/20091108kidney1108.html