Geographic disparities divide organ transplant world

By David Wahlberg | Wisconsin State Journal
Published on May 11, 2015

Harry Mitchell has been waiting for a kidney transplant in Chicago for seven years.

Mike Ottesen got a kidney in Madison in less than two years.

After waiting for a kidney and a liver in Chicago for two years, a long time for the double transplant, James Burch came to Madison and got the organs in six months.

Harry Mitchell, who lives in Harvey, Illinois, just south of Chicago, undergoes dialysis, which he has done three times a week for 10 years. Mitchell has been on the waiting list for a kidney transplant for seven years in Chicago, where the median wait time is more than six years. In Madison, it's a year and a half.

The nation’s transplant system is inconsistent: Where patients live — and whether they are able to travel — can determine if and when they get life-saving organs.

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To reduce the geographic disparities, policymakers are proposing broader sharing of organs. But the changes could threaten programs like UW Hospital in Madison, one of the largest transplant centers in the country, by forcing them to export more organs and possibly do fewer transplants.

“It’s a zero-sum game,” said Dr. Dixon Kaufman, transplant chairman at UW Hospital. “One person’s gain comes at another person’s loss.”

Despite increased attention to organ donation, demand for transplants continues to outpace supply.

More than 123,000 Americans are waiting for organs, about 79,000 of them in active status, meaning they could receive a transplant today.

Hundreds of thousands more are in earlier stages of disease. About 29,000 transplants are performed each year, and some 6,200 people die waiting.

Taxpayers pay for many transplants and for much of the care for people waiting for them. Medicare spending for kidney disease alone is $73 billion a year, with kidney transplants costing another $3 billion.

Geographic disparities in access to transplants are especially apparent for kidneys and livers, the most common transplants.

Patients typically wait just over a year to get kidneys in Mississippi and Nevada, but the median wait time is more than six years in much of Pennsylvania, Texas and other states, according to the Scientific Registry of Transplant Recipients.

Relatively healthy patients can get livers in Indiana and Tennessee, but patients must be sicker to receive livers in parts of California and New York, according to the United Network for Organ Sharing, or UNOS, which oversees the transplant system.

That dynamic prompted late Apple founder Steve Jobs to fly from Silicon Valley to Memphis for a liver transplant in 2009 — a workaround that is allowed, even encouraged, but requires travel money and insurance approval.

For people like Mitchell, 68, a retired correctional officer south of Chicago, even Madison seems out of reach.

Three days a week, he spends four hours tethered to a dialysis machine, which cleans his blood as his kidneys did before they failed.

He knows all too well what could happen if he stops: His son died of kidney and liver failure at age 27.

“I don’t know how much longer I have,” Mitchell said.

Patients, money, reputation at stake

Proposals to address geographic disparities pit less populous but donor-rich areas against large urban centers, the middle of the country against the coasts and local stewardship of organs against the belief that patients who most need organs anywhere should get them.

“It is our duty to make allocation independent of where you live,” said Dr. Daniela Ladner, a transplant surgeon at Northwestern Memorial Hospital in Chicago, where the median wait time for kidneys is more than six years. “Why should you be punished if you live in Chicago?”

Kaufman, of UW Hospital, said centers that want more organs should boost their local donation rates, not take organs from other places. The median wait time for kidneys in Madison is a year and a half.

“Help yourself before you start encroaching on somebody else,” said Kaufman, who called a proposal for broader liver sharing “unfair and un-American.”

The debate is heating up as transplant officials from around the country plan to gather in Chicago next month to discuss the possible new liver sharing model.

An effort to equalize wait times for kidneys could come next, said Dr. David Klassen, chief medical officer at UNOS.

Patient lives are not the only thing at stake. UW Health made $2.4 million from transplant services last year, charging about $330,000 for a typical liver transplant and roughly $190,000 for a kidney.

Transplants are not as lucrative as orthopedics, which netted $18.9 million at UW Health last year. But the business side of transplants is as much about reputation as revenue.

“They elevate the profile of a hospital and a health system,” said Dr. Milan Kinkhabwala, transplant chief at Montefiore Medical Center in New York. “There’s a big halo effect around transplant programs.”
Supply and demand
Transplants started about 60 years ago but did not become common until the 1980s. That is when widespread legal recognition of brain death enabled more organ donation and the drug cyclosporine became available to suppress rejection of organs in recipients.

UNOS, a nonprofit in Richmond, Virginia, runs the transplant system through a federal contract.

The country is divided into 11 regions and 58 local areas. Each local area has an organ procurement organization, which recovers organs from donors and sends them to about 250 transplant centers around the country.

Generally, organs are offered locally before being distributed regionally or nationally. Patient wait time is a key factor in allocating kidneys, while medical urgency is more influential for livers and other organs.

Organ supply varies. Less than 2 percent of people die in ways that allow organ donation, but such deaths are more prevalent in particular regions, especially the Southeast, according to a 2012 paper in the American Journal of Transplantation.

Racial minorities, who are more likely to live in large urban areas, are less likely to donate, according to donor registries and a 2013 study by University of Pennsylvania researchers.

About 63 percent of eligible people donated organs last year in Philadelphia and Washington, D.C., compared with about 90 percent in Iowa and Nebraska, according to the Association of Organ Procurement Organizations. In Madison’s local area, the rate was 86 percent.

The proportion of patients with organ-damaging diseases also varies, creating uneven demand. The rate of end-stage kidney disease is two-thirds higher in Texas than in the Northeast, for example, according to the United States Renal Data System.

Some transplant centers are less willing than others to accept lower-quality organs or perform transplants on patients who have significant medical risks, which can limit access in some areas.

UW in a sweet spot

The structure of the transplant system, which differs from place to place, benefits Madison.

Gift of Hope, the organ procurement organization in the Chicago area, is an independent agency responsible for 12.3 million people in the northern two-thirds of Illinois. It serves nine transplants centers, seven of them in Chicago.

The Wisconsin Donor Network, in Milwaukee, is also independent and covers 2.3 million people in southeastern Wisconsin. The network serves three transplant centers in Milwaukee: Aurora St. Luke’s Medical Center, Children’s Hospital of Wisconsin and Froedtert Hospital.

In Madison, the organ procurement organization is called UW Organ and Tissue Donation. It is part of UW Hospital. It covers 3.4 million people in most of Wisconsin, part of Michigan’s Upper Peninsula and bits of Illinois and Minnesota.

It serves one transplant center, UW Hospital.

Eight of the 58 organ procurement organizations are based at hospitals, with closer access to transplant doctors, and seven serve one transplant center.

Only two fit both categories, giving them the most streamlined operations: LifeShare of the Carolinas, in Charlotte, North Carolina, and UW Hospital.

Patients who come to Madison for transplants benefit not only from the area’s high donation rate but also from UW Hospital’s ability to connect them more directly to organs — an arrangement that puts Madison in a sweet spot.

“UW is in this perfect utopia, and they don’t want it to change,” said Sara O’Loughlin, transplant administrator at Froedtert and former transplant administrator at UW Hospital. “If I was still there, I’d say the same thing.”
“Everybody knows … go to Wisconsin”
More than 11 percent of patients on UW Hospital’s waiting list for livers — and 46 percent of those waiting for kidneys — are also listed at other transplant centers, said Jill Ellefson, transplant administrator at UW Hospital.

Most come to Madison hoping to improve their odds of getting a speedy transplant. Many are from Chicago.

“They see our wait times are shorter here,” Ellefson said.

Doug Penrod, a transplant coordinator at Northwestern, said the idea of going to Madison for kidneys is ingrained in Chicago’s dialysis culture.

“Everybody knows, if you want to get transplanted faster, you go to Wisconsin,” Penrod said.

Rhonda Williams, 51, from Dolton, Illinois, near Chicago, got on Madison’s list in March.

She has waited for a kidney in Chicago for four years. She was told she might have to wait three more.

“I had to do something,” said Williams, a human resources manager who also hopes to get on the waiting list in Indianapolis. “I need to increase my chances.”

Madison’s setup, along with UW Hospital achievements such as developing a cold storage solution for organs and performing an unusually large number of combined kidney and pancreas transplants, has helped the university become the fourth-largest transplant program in the country since 1988 and the 11th largest last year. Most of the top 10 are in larger cities.
Getting transplants relatively quickly
Mike Ottesen is pushing his 4-year-old daughter, Dakota, on the backyard swing set this spring and teaching her to ride her bike.

Last spring, he didn’t have the time or energy. Dialysis treatments took six hours three days a week and wore him out.

In December, he got a kidney transplant at UW Hospital after going on the waiting list in January 2013. He lives in Neshkoro, about 80 miles north of Madison.

“I can go on walks; I can do my yard work,” said Ottesen, 52. “It’s going really, really well.”

James Burch, 64, of North Chicago, Illinois, is “all the way back to being myself” after his kidney and liver transplant at UW Hospital in 2012.

Burch passed out more than a dozen times and spent months in the hospital as hepatitis destroyed his liver, preventing the organ from clearing poisonous ammonia from his brain. His kidneys shut down too.

After two years on the waiting list at Northwestern, the retired computer network engineer wasn’t sure he would ever get a transplant.

A doctor suggested going to Madison. With his wife’s help, Burch made the 240-mile round trip to UW Hospital nearly 20 times before and after his transplant, which came six months after he signed up on the Wisconsin list.

If he hadn’t tried UW Hospital, “I’d probably still be on the list at Northwestern,” he said.
Still waiting
Delores Rico has waited four years for a kidney at the University of Illinois at Chicago.

“It’s a hard life,” said the 45-year-old from Chicago, who gets up in the middle of the night Mondays, Wednesdays and Fridays to begin dialysis at 5:15 a.m.

Her aging mother lives upstairs and her son is at home while going to graduate school. Rico, a former medical receptionist on disability, said she can’t afford to go to Madison.

She has been called about possible transplants twice, but both ended up being mismatches.

“Maybe the third time will be the charm,” she said.

Mitchell, who lives in Harvey, Illinois, keeps close tabs on his calendar.

He turns 69 this month. Many doctors won’t do deceased donor transplants on people 70 and older.

Mitchell has been on dialysis for 10 years. At four hours per session, he has spent the equivalent of two full months sitting in a chair as tubes cycle his blood through a filter.

He developed diabetes and high blood pressure about 25 years ago. The conditions caused his kidneys to fail after he retired in 2002 from the Cook County Department of Corrections, where he spent 31 years keeping night watch at the county jail.

Shortly before he retired, his son Harold died. Harold had become ill more than a decade earlier, at age 16, but doctors didn’t identify his rare liver condition until it was too advanced for him to go on the transplant list, said Mitchell and his wife, Signora. The liver condition destroyed Harold’s kidneys.

Mitchell is still holding up. To keep his heart strong for a transplant, he walks a few times a week and tries to eat well.

But he wonders how long his body will last.

When he got on the University of Illinois at Chicago’s waiting list in 2008, doctors said he might have to wait seven years.

He has done that. Now he wonders: How much longer?

“I’m still waiting on that call,” he said.

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