Kidney surplus pulls out-of-staters to Oregon

Kidney surplus pulls out-of-staters to Oregon

Transplants - The state's short waiting list raises the question: Should patients who live here receive available organs first?

Sunday, July 29, 2007
GABRIELLE GLASER
The Oregonian

After years of stalling, Teresa Harrah bowed to the inevitable. Her kidneys, swollen with cysts, had shut down. So twice a week, the Riverside, Calif., woman drove to a dialysis center, where a machine flushed her body of toxins. But the procedure left her weak and nauseated. "I'd come to work," she says, "and throw up in my trash can."

Her only chance at a normal life was a kidney transplant, but in California the wait was as long as seven years. And that probably was too long. The previous year 4,200 Americans had died waiting for kidney transplants. Harrah was 45. Her mother had died of polycystic kidney disease, and her brothers both had the same illness. Clearly, she had the fatal gene.

She turned her hopes north, to Oregon.

Harrah went exploring on the Internet and discovered William Bennett, the medical director of transplant services at Portland's Legacy Good Samaritan Hospital and Medical Center. At Good Sam, the average wait for a kidney was nine months.

Would Dr. Bennett accept her as a patient? He would.

Harrah flew up for an evaluation. She knew that federal laws permitted her to transfer her California waiting time -- 26 months in all -- to Oregon. Bennett approved her for the local list.

Six months later, she got the call. A matching kidney was available.

At dawn the next morning, the title company where Harrah worked as a vice president flew her to Portland on its charter jet. "I thank God every day for my kidney," she says, "and that I was allowed to go to Oregon to get it."

It's a lot easier to get a kidney some places than others -- and Oregon is one of the easiest. So it's understandable that Oregon would attract some kidney patients who live outside the state's transplant territory. The number of transplant patients who travel to Oregon for surgery is small, but experts agree that the system raises fairness questions. Who gets organs? Should residents of one state benefit from the decisions and demographics of a neighboring one?

"We recognize the problem and we're trying to figure out how to address it," says Peter Stock, who chairs the United Network for Organ Sharing's Kidney Transplantation Committee.

"The whole issue of organ allocation comes down to a balance of justice, utility and efficiency," he says, adding that his committee is working on a new system that deals with those concerns. "They are real and we're starting to try and fix them," says Stock, a kidney-transplant surgeon at the University of California San Francisco Medical Center. "But there is no easy answer."

A counterargument is that where you live shouldn't make any difference in how long you wait for a transplant. "It's true that if you need a kidney, it's advantageous to live here," Bennett says. "But it begs the question: Are kidneys a national resource or are they a local resource?"

When it comes to kidneys, the question becomes more important every year. The diabetes epidemic, for one thing, is ramping up kidney disease at unprecedented rates. In the United States, more than 72,300 patients are waiting for kidneys, a number that has more than doubled in the past decade.

Rules governing transplants, which the Virginia-based organ-sharing network administers, say it's OK to transfer wait time from one transplant region to another. They also allow patients to register on multiple waiting lists. But kidney patients can take advantage of that only if they can travel at a moment's notice, pay for a hotel and heal where they have surgery, for a minimum of six weeks.

Having money can help shorten the wait. "If you're poor and you live in L.A., you stay on the L.A. list," Bennett says. "I admit that it's not fair, but I didn't make the rules. I have to do what's best for the patients who present to me -- that's the Hippocratic oath. If society gets around to fixing it and making it more equitable, it's going to hurt places like Oregon."

Streamlining the system

The national transplant system, established in the mid-1980s, attempted to regulate the supply and demand for kidneys. Because the system lacked organization, surgeons were left to their own networking skills.

Mike Seely worked as a critical-care nurse in rural Montana at the time. "There was no central anything, no order, nothing," says Seely, who now directs the Pacific Northwest Transplant Bank in Portland. "Someone would die unexpectedly, and I'd call other transplant centers saying, 'Hey, do you guys have patients who might match our donor?' "

Now, a computer makes kidney matches based on a patient's need, length of time on a waiting list, blood type, physical size and proximity to the donated organ. Most donated organs go to patients waiting within the territory.

Kidney transplant centers -- the three in Oregon are Good Samaritan, the Portland VA Medical Center and Oregon Health & Science University -- needed organ banks. So with federal approval, the banks created 58 organ territories across the country, intending to equalize supply and demand. The Northwest transplant bank serves Oregon, southwest Washington and southern Idaho.

Its educational affiliate, Donate Life Northwest, has been particularly successful in persuading the public to become donors. Half of licensed Oregon drivers -- 1.5 million -- have designated themselves as donors.

And, for the past decade, Oregonians have donated their organs at a rate much higher than the national average. If you have a "D" on your Oregon driver's license and you end up as a possible source of a transplant organ, the chance that a transplant actually takes place when your organ becomes available is more than 75 percent. The national average is 62 percent.

"Oregonians are very generous," says Seely. "They are open to the idea of donation."

And, when it comes to kidneys, they also have more to give.

Racial minorities suffer disproportionately from diabetes, which destroys kidneys, and Oregon is 90 percent white. So Oregonians suffer from end-stage kidney disease at relatively low rates, meaning that local demand for transplants is also relatively low.

And while fewer Oregonians may die of kidney disease, more of them die from stroke and suicide, both likely to cause the brain to die while other organs remain transplantable.

Another factor complicates the situation. In recent years, a growing number of kidney transplants have come from live donors. In Oregon, the number of living donors now matches the number of brain-dead donors. And the numbers of both are increasing every year.

In California, transplants from brain-dead donors still exceed those from living donors, partly because many living donors in California aren't qualified. In large cities such as Los Angeles and San Francisco, the same diseases that make residents sick -- diabetes, hypertension -- damage organs and limit the number of prospective donors.

Without Oregon-style growth in the relative number of living donors, California's waiting list just gets longer. And that's true in many states.

Crossing state lines

Good Samaritan's transplant program, founded in 1999, has inclusive rules about who may join the waiting list. So far, doctors there have transplanted more than 600 kidneys. Of those, 25 have gone to patients from California, Montana and Nevada.

"I know there are people who are going to ask, 'Why are Oregon kidneys going to Californians?' " Bennett says. "The fact is, the rules permit this -- and my responsibility is to patients who come to me."

Peter Stock, of the organ-sharing network, understands the approach. "What are you going to do? Tell someone they can't?"

"The doctor has an ethical obligation to take care of the patients who come to him," Bennett says. "What if someone from Weed comes to our office? Do you say 'You need to go to San Francisco, because you live 49 miles south of our border?' The national system doesn't make sense."

Denise Fink, a Bay Area clerk with lupus, turned to Portland for a kidney this spring. After two years on a California list, she learned through a friend of her mother's about Oregon's short waiting time. So she became a patient at Good Samaritan. Fink, 27, lives a quiet life, shuttling between her job at a credit union and the home she shares with her parents. She has a catheter in her abdomen and gives herself dialysis at night.

Fink has already undergone one transplant; her father donated a kidney several years ago. But treatment for her lupus caused her kidney to fail, and no one else in her family is eligible to donate. So now, she waits for a call, and has memorized the flights that leave for Portland from each Bay Area airport. All told, her wait already exceeds the average Oregon waiting time.

Fink just tries to be patient. As she administers her dialysis every night, she dreams about the future. "I try not to mope, bring myself down about it," she says. "But if I'd known about Oregon sooner, I wouldn't have spent two years waiting in California."

Gabrielle Glaser: 503-221-8271; gabrielleglaser@news.oregonian.com

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