The longest wait

December 1, 2009

The longest wait

Doctors grapple with flaws in transplant policy

By JOHN FAHERTY
GANNETT

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.

The Phoenix, Ariz., woman, who was about to attend Arizona State University when she got sick, 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."

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

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."

"Good enough"

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 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 effective 10/30 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."

A scarce resource

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."

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