Liver transplant for Apple CEO turns spotlight on organ system inequities

Steve Jobs was able to travel to get on a shorter wait list. UNOS will examine regional disparities in organ allocation.

By Kevin B. O'Reilly amednews correspondent — Posted July 27, 2009

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Apple Inc., maker of devices such as the iPod and the iPhone, is headquartered in Cupertino, Calif. The company's CEO, Steve Jobs, lives in the area. Yet when Jobs needed a transplant to replace his liver, diseased by the spread of pancreatic cancer, the iconic Silicon Valley executive did not get his new organ at nearby Stanford University Medical Center -- or anywhere else in California.

Instead, he traveled more than 2,000 miles to Methodist University Hospital Transplant Institute in Memphis, Tenn., where the wait list for a liver is about 80% shorter, according to data from the United Network for Organ Sharing. The median wait for a man Jobs' age to receive a liver in the organ-allocation region where Memphis is located is 543 days -- about a third the wait time of Jobs' home California region.

The case highlights longstanding regional disparities in wait lists for life-saving transplants and has reignited debate over how a few well-to-do patients are able to register as potential recipients at distant centers to better their odds of getting an organ. These inequities in the nation's organ-allocation system should be addressed, say transplant physicians and medical ethicists.

UNOS, which has a federal contract to administer the Organ Procurement and Transplantation Network and sets the country's transplantation policy, will hold a meeting in spring 2010 to address such issues, said Robert S.D. Higgins, MD, the organization's immediate past president.

"We are going to look at how to make policy and think about the priorities, what our charge is, and address the geographic variation and socioeconomic variation," said Dr. Higgins, a heart transplant surgeon and chair of cardiovascular-thoracic surgery at Rush University Medical Center in Illinois. "It's going to be a hard conversation. Whenever you have a precious and scarce resource, someone has to make a tough choice."

Apple did not respond to American Medical News inquiries for information about its CEO's medical care, but Jobs gave permission for Methodist University Hospital to confirm that he received a liver transplant there.

"Mr. Jobs underwent a complete transplant evaluation and was listed for transplantation for an approved indication in accordance with the Transplant Institute policies and United Network for Organ Sharing policies," according to a statement by James D. Eason, MD, the institute's program director and transplantation surgery chief. "He received a liver transplant because he was the patient with the highest MELD score [model for end-stage liver disease] of his blood type and, therefore, the sickest patient on the waiting list at the time a donor organ became available. Mr. Jobs is now recovering well and has an excellent prognosis."

Time to change rules?

Though Jobs likely went strictly by the book to get a transplant, the rules in the book need changing, argued Arthur L. Caplan, PhD, director of the University of Pennsylvania's Center for Bioethics and one of the country's leading experts on the medical ethics of organ transplantation.

"It's perfectly understandable that [Jobs] is going to use the system and his resources and try to get the care he needs," Caplan said. "I understand that from the point of view of personal survival. But the whole point of the allocation system was to try and balance off the differences in people's financial ability to work the system by having some distribution rules."

Transplant centers cannot stop anyone from registering as a potential recipient at multiple locations, said UNOS' Dr. Higgins. So long as patients meet the clinical evaluation criteria, can afford to pay and have access to follow-up care there is nothing in theory to stop the rich from listing themselves at many different centers.

Caplan has a different viewpoint. "Multiple listings should be stopped. It is inherently unfair. It is absolutely not justified to let people undercut the system by listing more than once."

But Dr. Higgins said, "It's about maximizing the patient's access to services. If you have the ability to register at Northwestern, Rush and so on, that increases their chances because life is in the balance. No one wants to take that away from them."

Dr. Higgins said the focus should be on helping uninsured and underinsured patients gain adequate access to life-saving transplant care.

Other transplant surgeons agreed that patients have a right to list as potential recipients at multiple centers.

"The financial perspective is a real one, and there may be an advantage to those who have the means to list at multiple places. But we [UNOS] have thought about this and again as a community have agreed that this is something that is OK," said Joren C. Madsen, MD, DPhil, president of the American Society of Transplantation and director of the Massachusetts General Hospital Transplant Center. "People in our program do list at multiple places, and I can tell you that many of them have nowhere [near] the means of Steve Jobs and are basically blue-collar workers with average incomes."

As for reducing the geographic wait disparities, sharing organs across broader areas comes with its own challenges and could increase the cost of retrieving the organs by 35% or more, said Goran Klintmalm, MD, PhD, past president of the American Society of Transplant Surgeons and chief and chair of the Baylor Regional Transplant Institute in Texas.

Dr. Klintmalm said that part of the regional wait disparity is due to how successful organ procurement organizations are at securing donations from patients and families. Also affecting wait times are center-specific factors such as how aggressively they pursue donors and what criteria they use.

"Programs even in the same town can have very different waiting times," Dr. Klintmalm said. "The issue is far more complex than it comes across in the public debate."

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Regional disparities

[download pdf]

The number of people on organ donor waiting lists varies greatly across the country.

Waiting list
Region All organs Livers
1 - Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island 4,235 878
2 - District of Columbia, Delaware, Maryland, New Jersey, Pennsylvania, West Virginia 15,164 2,187
3 - Alabama, Arkansas, Florida, Georgia, Louisiana, Mississippi, Puerto Rico 12,829 805
4 - Oklahoma, Texas 11,356 2,256
5 - Arizona, California, Nevada, New Mexico, Utah 23,952 4,040
6 - Alaska, Hawaii, Idaho, Montana, Oregon, Washington 2,582 341
7 - Illinois, Minnesota, North Dakota, South Dakota, Wisconsin 9,196 1,346
8 - Colorado, Iowa, Kansas, Missouri, Nebraska, Wyoming 5,094 940
9 - New York, Vermont 9,765 1,836
10 - Indiana, Michigan, Ohio 7,326 813
11 - Kentucky, North Carolina, South Carolina, Tennessee, Virginia 9,085 1,023

Source: United Network for Organ Sharing

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