MEMPHIS, Tenn. - It was nearly 4 a.m. when Steve Jobs' gleaming private jet finally touched down. The lights at Memphis International Airport cast a halo of fluorescent gold around the $40 million, 15-seat Gulfstream as it completed its 1,800-mile journey from California, an overnight Hail Mary across three time zones.
Waiting in a car on the tarmac that crisp March 2009 morning, Dr. James D. Eason greeted his famous patient, the reclusive tech icon known worldwide for the iPhone and decades of innovation. As head of transplant surgery at Methodist University Hospital Transplant Institute, Eason would perform a rare type of liver transplant on 54-year-old Jobs in the hours that followed, extending his life by 2 1/2 years and giving new life, too, to a bedeviling question of medical ethics.
Simply put, did Jobs, the iconic billionaire CEO of Apple Inc., the most visible organ transplant patient in the world, cut in line in Memphis?
It's a simple question that frames an intensely complicated raging national debate over how money influences access to the best doctors and hospitals, or in this case, a precious transplanted organ.
"Transplants are a microcosm of the larger health care system," said Gordon Bonnyman, a Nashville lawyer who, as the executive director of the Tennessee Justice Center, has led a series of often-unsatisfying skirmishes seeking better health care for the poor. "In my experience, (the poor) are grateful for what they get, whatever that is. They are not very good at asserting themselves. They do not expect, like Steve Jobs, to be pushing ahead to the head of the queue.
"If you don't have the 'do-re-mi,' you're not going to get quality care."
Through a legal, little-known practice called multiple listing, Jobs doubled his odds by getting on waiting lists in California and Tennessee. Competition was too stiff back home in California, and Jobs, his wealth and fame notwithstanding, may have died waiting. But in mere weeks he jumped to the top of the list in Memphis, ahead of dozens of others.
Nearly 20 people die every day in the U.S. waiting for an organ, a simple function of supply and demand. Driven by those statistics, a fraction of those needing lifesaving transplants are landing spots on wait lists at two, sometimes more, transplant centers. Some travel thousands of miles to list at hospitals in different regions of the country in hopes of receiving a kidney, liver, heart or other organ. Their personal stories underpin national research that shows people willing - and able - to travel have a 74 percent higher chance to get a liver. They're paying tens of thousands of dollars for transportation, and that much or more for temporary housing, even before facing their share of the costs of a transplant that can top $500,000 over a lifetime.
Many are privileged; an analysis of data by The Commercial Appeal found nearly two-thirds of liver transplant candidates listed at hospitals in two or more regions live in ZIP codes where the median household income exceeds that of their home state. They may not have Jobs' world-ranking wealth, but they do come from places like Cabin John, Md., a bucolic community nestled along the Potomac River where the $186,875 median household income is more than 2 1/2 times the state median; or River Forest, Ill., an affluent Chicago suburb where three-fourths of adults over 25 have a college degree; or Los Angeles' privileged Encino community.
Others aren't of such means; they get there through fundraising, finding the right insurance or marshaling family and community resources. A growing number are skipping multiple listing and simply relocating near a distant transplant hospital: moving across the country to live with relatives, to find a charitable family to take them in - anything to save their lives.
As it was for Jobs, the goal often is to get from a densely populated state such as California to a more rural one - Tennessee, for example - where competition is far less intense.
Cindy Jordan moved 3,100 miles from her home in Oregon to Los Angeles and then on to Atlanta. The terminally ill former sales manager is listed at Piedmont Hospital and faces financial ruin but realizes this is her best chance, perhaps her only chance, to get a liver.
"The worst part is waiting," she says. "It's not getting sicker. It's the waiting."
Long-distance transplant listing is expected to increase as health professionals continue tweaking policies to level stark regional disparities in access to organs. Those changes will provide new opportunities for patients in congested urban areas in the Northeast and on the West Coast and, conversely, may reduce opportunities in the South.
Opponents of multiple listing have attempted, unsuccessfully, to outlaw or restrict it twice in past decades, arguing the system tips the scales to Jobs and other Americans of means.
Even advocates like Ron Taubman - a retired Los Angeles real estate executive who got a kidney transplant in 2010 after listing at hospitals
in Florida, Texas and Arizona and who thinks the debate must shift from outlawing or restricting multiple listing to making it affordable to all - believe there are lessons to be learned in the story of Steve Jobs, who died 2 1/2 years after his Memphis transplant, years short of the average survival rate.
"If the man (Dr. Eason) truly thought he could save his life, good luck," Taubman said. "I only wish him well. But keep in mind that there was somebody out there that was waiting for a liver that didn't get it."
Eason, 52, the surgeon who transformed Methodist's liver transplant program into one of the largest and most-respected in the nation, believes the legacy of Jobs' transplant should be celebrated, not criticized or derided.
"This man could have gone anywhere in the world to get his medical care. And he chose to come to Memphis," Eason said. "This is something that we should be proud of."
On Jan. 14, 2009, Jobs announced he would take a medical leave from Apple. He blamed a "hormone imbalance."
In fact, he was critically ill.
He got on a liver transplant waiting list in California. But as biographer Walter Isaacson would write later in a best-selling 2011 biography, "it became clear he would never get one there in time." As Jobs and his wife, Laurene, researched the dilemma, they discovered multiple listing. Jobs' lawyer and friend, San Francisco attorney George Riley, was from Memphis and knew Eason. And, they learned, Eason was open to putting Jobs on the list at Methodist.
Before an organ transplant program will add a candidate to its wait list, the patient must undergo rigorous testing. Blood is drawn. There are cardiac tests, X-rays, colonoscopies and a battery of other medical tests along with psychological and financial evaluations, even a meeting with a social worker.
Many patients travel long distances to undergo these tests. But Eason went to Jobs, a virtual house call that crossed six states. Eason later catered to a recuperating Jobs in Memphis, coordinating his hospital recovery, cancer tests, pain treatments and nutrition, even dropping by a convenience store to get Jobs his favorite energy drinks, Isaacson reported in the biography, Steve Jobs. Later, Eason visited Jobs in the Midtown home he'd acquired, taking him on walks to nearby Overton Park.
Through the myopic lens through which the world has come to know Eason - through Steve Jobs - his actions may seem preferential. But, in private, he's made personal accommodations for many less-celebrated transplant recipients.
Eason talks of personally making peanut butter and jelly sandwiches for patients to restore their strength or taking them on walks in the garden at Methodist or on the streets outside the hospital.
"I'll do everything I can for them. And I ask them to do everything they can for themselves. That's the deal."
Sheila Reddick might have been Steve Jobs' polar opposite: She lost her husband in a stabbing years earlier and was left to eke out a living as a Department of Motor Vehicles examiner. She raised a family in Washington, D.C., in the hardscrabble Trinidad neighborhood northeast of the Capitol. She was her family's spiritual force, its peacemaker and inspiration.
"Everything she did, she did with love," said daughter DeShawn McMillan, 42. "So with my mom being gone, it's just like a big void in our family."
Reddick, 52, died in 2005 on the congested waiting list at the nearby Hospital of the University of Pennsylvania in Philadelphia. Looking back, McMillan, now a vocal advocate for organ donation, said she would have liked to multiple list her mother, but they couldn't afford it. They couldn't focus on it anyway; they were too overwhelmed by the complications of Reddick's disease and the constant battle with her health insurance provider. Reddick became too weak to receive a transplant and was admitted to a health rehabilitation center hoping to regain enough strength to undergo a transplant.
"She was only there I think maybe about like two weeks and she called me crying. She said, 'They said I have to go.' And I said, 'Why!' And she said, 'Because the health insurance don't want to pay anymore.' And to me that's when they cut the lifeline."
Sheila Reddick's lifeline was tethered to a system that is overwhelmed by demand for scarce organs and for costly hospitalizations and treatments. Despite her job and her family support, she couldn't muster the resources - or the money - to save her life.
Some 7,100 people die every year in the United States waiting for a transplant, a testament to the scarcity of organs. That shortage drives many patients with the right information and the right resources to do more than just wait for an organ to come to them. They go to the organ.
Nationally, nearly 6 percent of the 121,000 patients waiting for organs are multi-listed, many at hospitals within the same state or close to each other.
When multiple listing involves hospitals in separate regions of the country - the only way some patients feel they
can gain any real advantage - the percentage drops dramatically. This is where an even more select group - the 1 Percent of transplant candidates - emerges.
Among 15,784 patients who were waiting for a liver transplant at the end of July, for example, only 156 - fewer than one percent - were multiple listed in different regions.
"It's one of the best-kept secrets in the transplant profession," said Taubman, the multiple listing advocate who's advised several Californians on ways to find kidneys out of state. A key bit of his advice: When multiple listing, don't bother listing at hospitals located within the same UNOS region. "It's a waste of time."
The United Network for Organ Sharing, or UNOS, the nonprofit contractor that operates the nation's organ procurement network and sets transplant policy, carves the country into 11 regions. And because organ allocation policies traditionally favor local and regional candidates first, a candidate needs to cross regional boundaries, he says. That strategy helped Taubman successfully get a transplant in 2010. He listed in Jacksonville, Fla., in Region 3; Houston in Region 4; and Arizona in Region 5, where he got a transplant at the University of Arizona.
Reasons patients fail to multiple list are many: Logistical difficulties, family duties, inadequate insurance, expensive travel and employment that ties a candidate to his or her hometown. Some patients are simply too sick.
UNOS requires hospitals to inform patients of their right to multiple list. But some, like Taubman, believe such disclosures are inadequate, that more information is needed. And though hospitals have worked to make multiple listing more affordable, cost remains a major factor.
Over dozens of interviews with patients, surgeons, health professionals, advocates, insurance executives and businessmen across the country, money was repeatedly cited as a factor in deciding whether to multiple list.
"It's a money game," said Michael Nachman, 47, co-owner of a title insurance company who said he and his wife, a high school principal, considered multi-listing before he got a liver transplant in his home state of Michigan in 2011, but determined they couldn't afford it.
"The first thing they ask you is, 'How deep are your pockets?' "
It was more than money that made Steve Jobs' transplant possible. It was information and connections, too. After searching the Internet and learning that multiple listing was possible, Jobs and his wife found a critical tie to Memphis, in his attorney Riley. Jobs qualified medically, and by late February 2009 he'd cleared the evaluations.
His call came when a young man in his mid-20s died in a car crash.
But in the glare of the surgery room lights, there was trouble. A cancer patient, Jobs had tumors that spread from his pancreas, destroying his liver. Now, there was more room for worry.
"The transplant was a success, but not reassuring," biographer Isaacson wrote. "When the doctors took out his liver, they found spots on the peritoneum, the thin membrane that surrounds internal organs. In addition, there were tumors throughout the liver, which meant it was likely that the cancer had migrated elsewhere as well." By the time he died 2 1/2 years later, Jobs' cancer had spread "to his bones and other parts of his body," Isaacson wrote. His death fell short of national averages - more than 70 percent of liver transplant recipients survive at least five years.
Doctors diagnosed Jobs in 2003 with a pancreatic neuroendocrine tumor, a rare but slow-growing cancer. Yet Jobs, who came of age in the 1970s California counterculture, opted initially to treat his cancer with homeopathic remedies that included a vegan diet and carrot and fruit juices. Jobs put off surgery for nine months, finally relenting in July 2004. But by then the cancer had spread to his liver.
Jobs' metastatic cancer prompts questions about whether Methodist "wasted" a liver on him. There's no question it was uncommon at the time. A recent University of Kentucky study found that among 87,280 liver transplants performed in the U.S. between 1988 and 2008, just 150 involved neuroendocrine tumors that had spread to the liver. Richard Schilsky, a University of Chicago gastrointestinal cancer specialist, told reporters following the Jobs transplant that liver transplants that aim to eradicate a metastatic neuroendocrine tumor are "risky and unproven."
However, transplant surgeons told the CA such procedures are done at times and are considered medically sound depending on an individual patient's circumstances.
"The devil's in the details. It all depends," said Dr. Alan Langnas, director of transplantation at the University of Nebraska Medical Center and president of the American Society of Transplant Surgeons. "But in general, there are acceptable situations to do a liver transplant on somebody with metastatic neuroendocrine tumor to the liver."
Eason declined to discuss specifics of Jobs' cancer, citing medical privacy. However, he said Methodist
is a national leader in treating neuroendocrine tumors that spread from the pancreas or intestine to the liver. He described a very strict protocol for liver transplantation under this scenario: The primary tumor must be removed. The cancer spread must be confined to the liver. The cancer should be a low-grade or nonaggressive tumor.
Eason said about 75 percent of the patients who receive this treatment survive at least five years. That's as good as the survival rate for liver transplantation in general.
Eason declined to elaborate on previous statements attributed to him, essentially that Jobs had asked for another couple of years to be with his family - to work and to live - and that Eason gave it to him.
"Following the transplant, he came out with the iPad, and the new iPhone and presented the Cloud," Eason told WMC-TV after Jobs' death. "No telling what else is still in the works that he thought of after that time."
"You don't need to be Steve Jobs," says liver transplant recipient Jim Holahan. He should know. If anyone is not Steve Jobs, the self-styled bohemian Buddhist who made a fortune in computer technology, it is the once-transient James Francis Holahan, an Irish Catholic die-hard Notre Dame football fan who grew up on the opposite coast in New Jersey, where he graduated high school in 1981 with Jobs' future wife, Laurene, who, through a spokeswoman, declined to comment for this article.
He is not shy about telling his story. To illustrate, the 6-foot-3 Holahan lifts his shirt.
His surgical scar runs along the lower contour of his rib cage like a bell curve or, better yet, a roller coaster - a reminder of the ups and downs that almost led to his death last year.
A disabled veteran with post-traumatic stress disorder, Holahan floated from city to city, finding odd jobs and drinking hard to escape life. He got horribly sick. After a series of hospitalizations, he learned his liver was failing. He got on the wait list at the Hospital of the University of Pennsylvania in Philadelphia - the same list where Shelia Reddick died five years earlier - but doctors gave him little hope.
"We can keep you alive, basically," he recalls being told. "But think about moving. Think about relocating. It doesn't look good for you here." Holahan did the math. There were simply too many candidates ahead of him.
After a little research, he began focusing on North Carolina, where the competition is less intense.
Federal liver transplant rules assign the highest priority to the sickest liver patients. The health of liver transplant candidates is measured by something called the Model for End-stage Liver Disease, or MELD, scoring patients on a range of 6 to 40. Patients with the highest scores - the sickest - are first in line when livers become available for transplant.
Because livers are scarcer in some parts of the country, great disparities exist in the access to liver transplants among the nation's 11 regions. Consequently, liver patients tend to be much sicker in liver-scarce regions before getting a transplant, and candidates are more likely to die waiting.
In traditionally rural Region 11, the federal transplant zone encompassing Tennessee, Kentucky, Virginia and North and South Carolina, for example, the median MELD score for liver transplant recipients is 23. In more urban Pennsylvania, where Holahan first listed, it's 29. In New York, it's 30. In California, where Jobs was first listed, it's 33.
But if liver patients in California or Pennsylvania can simultaneously get on a list in Tennessee, or North Carolina, they can greatly increase their chances of receiving a transplant.
With no job or family tying him down, and enabled by Medicare coverage and disability payments that earn him $48,000 a year tax-free, Holahan, 51, moved to Durham, N.C., where he got a liver transplant a week after listing at Duke University Hospital in March 2012. He discovered MELD scores of many of his fellow candidates didn't come close to approaching his 28.
"I scratch my head and go, 'that's ridiculous,' " he said. "There are people dying somewhere else in the country with MELD scores of 25 to 30. And here in Durham, they're getting transplants at 15, 16."
Transplant policy specialists have tried for years to lessen those disparities. Traditionally, livers have been offered first to local candidates living near the donor and then to the larger region. UNOS tweaked its liver allocation policy earlier this year by granting more priority to the most medically urgent patients.
To address larger regional disparities, UNOS policymakers are studying more changes, including using computer modeling to reshape regional boundaries to even access. Some liken the proposed changes to political gerrymandering because boundaries are often configured in odd shapes. In one iteration, Memphis and West Tennessee are realigned with Kansas, Oklahoma, Missouri and Southern Illinois; old Region 11 includes most of the rest of Tennessee, Virginia and North and South Carolina
but adds Georgia and Alabama and leapfrogs to include eastern Pennsylvania, part of New Jersey, New York City and Puerto Rico.
Despite pending changes, many aren't bothering to multiple list. They're picking up their lives and relocating to a distant city to list at a single hospital where chances of getting a transplant are greater. UNOS spokesman Joel Newman said there are "hundreds to thousands" of such patients, though UNOS data cannot reliably track the phenomenon.
They are people like Jordan, 51, whose battle with a rare, debilitating liver disease led her on a 3,100-mile trek from her home in Oregon, to Los Angeles, and then to Atlanta, where she and her husband, Pat, moved into a tiny duplex they're renting for $600 a month - on top of the $960 a month they're paying on their house back in Bend, Ore.
"We have exhausted everything we have," Jordan says, describing how the couple tapped the generosity of friends and their church to move to Atlanta, where she is a liver transplant candidate at Piedmont Hospital. Though she is an Oregon resident, she never listed there. She chose instead to list in Southern California, where she grew up. But given the long waiting list there, doctors advised her to move to the Southeast.
"I just did it," she said, likening the move to jumping from a cliff, something she used to do for pleasure from the rocky precipices along Prineville Reservoir in Oregon. "I just close my eyes and do it."
Though often unyielding, the system bends at times to resourceful people like Jordan or to the mercy of hospitals.
After Vanderbilt University Medical Center in Nashville discharged retired Crossville, Tenn., nurse Beverly Loyd earlier this year to a hospice because her insurance policy wouldn't cover a liver transplant, Methodist University Hospital in Memphis agreed to take her. She received a new liver in June at Methodist. Eason has also helped a number of poor Puerto Rico residents receive new livers. Eason now performs transplants in Nashville, too, under an arrangement with St. Thomas Hospital that's expected to provide more opportunities to Tennesseans.
Yet all too often, patients must dig deep to find a way.
Jordan has Medicare coverage and gets help, too, from her husband's insurance. Even so, they've spent an estimated $25,000 of their own money over the past year (neither Cindy's Medicare coverage nor Pat's insurance pays for travel) and much more over the years battling Primary Sclerosing Cholangitis, a rare disease that causes severe abdominal cramping and which has come close to killing her on several occasions. Her life is held together by a fragile chemistry of multiple insurance policies, faith and the charity of others. Pat gets his insurance through his job as the executive director of a church back in Oregon. But in order for Cindy to qualify for a transplant in Atlanta, Pat must be with her, as her contracted caregiver. The church lets him perform his duties via a remote computer connection.
"They've bent over backwards for us," Pat shrugs. "If it was most corporations they would say, 'You used all your time off. We've got to let you go. Sorry.'"
Hospitals closely scrutinize patients, and their pocketbooks, to ensure organs aren't wasted. They need to ensure it's the right fit: the right blood and tissue type. The right positive attitude. The right support system. That includes securing housing near the hospital to recuperate in the weeks after surgery.
When Jobs landed on the wait list in Memphis, his team began looking for a house for him. Transplants involve major surgery, and hospitals require out-of-town patients to secure nearby housing for the weeks of recuperation that follow. Jobs found a two-story 5,800-square-foot Italianate home.
The State of Tennessee owned the home. It had paid $1.3 million in 2005 for the property at 36 Morningside Place, which briefly served as the chancellor's home for the University of Tennessee Health Science Center. But now, at the height of the biggest economic recession in 70 years, the state sold the home for $850,000.
State records show Riley, Jobs' lawyer, signed a purchase agreement on March 23, 2009, as it became evident Jobs would be in Memphis for a while. Days later, he made it official, filing a deed with the Register's Office.
Secrecy surrounded the deal. Riley acquired the home in the name of a shell company, LCHG LLC, which had been recently set up by attorneys at the Burch Porter Johnson law firm in Memphis. Two years later, ownership of the home was transferred to Eason, the surgeon, for the same amount Jobs had paid - $850,000.
In a hearing in June 2012 before the Shelby County Commission, Eason faced questioning about that transaction. He was there asking for the commissioners' support during a policy dispute with UNOS, but the questioning veered into how he wound up with Jobs' home.
"It's a fair question," Eason said, assuring commissioners there was "absolutely not" any deal cut to secure a liver for Jobs.
"I took care of him
and visited him in that home. When I learned that it was going to be going on the market, I asked if I could purchase it," Eason told commissioners.
Yet Eason didn't tell commissioners all he knew.
Eason was going through a divorce and moved into the house two years before buying it. And while he was there, from early summer 2009 until he acquired the deed in May 2011, the utilities and property taxes were paid by Riley, Jobs' San Francisco lawyer. Records show Riley, who's worked as Apple's outside counsel, wrote personal checks in 2010 and 2011 totaling $23,585 to cover the property taxes. Riley also used his MasterCard to pay Memphis Light, Gas & Water $8,770 for utilities at the home through 14 payments between May 2010 and May 2011 - again as Dr. Eason lived there before buying the house. Eason put the utilities in his name after he purchased the home on May 5, 2011, records show. Eason said he lived in the home only part-time during the first of those two years as he tried to reconcile with his wife . "And then, in 2010, sometime in spring of 2010, I moved in there and stayed there until I purchased the house. And live there now," he said.
Arthur Caplan, a bioethicist at New York University who has been critical of multiple listing and the Jobs transplant in particular, said the disclosure of Eason's living arrangements is troubling.
"It strikes me as a potential conflict of interest," Caplan said. "It strikes me as straining ethical credulity to have him there saying, 'Well, you know, I just lived here. I was just lucky. And this guy just chose to pay my rent.' "
Riley declined comment, citing attorney-client confidentiality.
Eason characterized the arrangement as a transaction among friends. Following the surgery, Eason grew close to Jobs, his family - and Riley.
"We developed a close friendship. And we treated each other like you would do any other friend," he said. "He was a friend helping me out. And I was, you know, looking after the house for him."
More than wealthy benefit from double listing
Programs for needy patients are growing around the transplant industry, from the Memphis-based National Foundation for Transplants, a nonprofit that's raised nearly $60 million for transplant candidates, to charitable Angel Flight organizations with pilots willing to make emergency flights for free, to a variety of housing programs that offer discount rates for transplant recipients during treatment and recuperation. They include places like Philadelphia's Gift of Life Family House, where transplant recipients and their families stay in modern, spacious hotel rooms with access to a kitchen and pantry for as little as $40 a night to Memphis' Open Arms Foundation, which provides free apartments and homes to patients in medical crisis.
Dr. James D. Eason believes the playing field has changed. He said the predominant group of patients double listing in Memphis are African-American, many poor, from Alabama, Arkansas, Mississippi and surrounding states who benefit not only from Medicare but also from information.
"Like any other health care decision, it's primarily people who seek out information and seek out better outcomes and excellent care,'' Eason said. "So I would say it's an option (more) for those that are informed and those seeking better health care than necessarily those who are of better financial means.''
Private insurance companies, too, have become much more accommodating of multiple listing. Critics like Arthur Caplan, a bioethicist at New York University, have pointed to duplicative testing and evaluations at transplant centers as a prohibitive cost factor. However, major insurers like Aetna, for example, now maintain a national network of "Institutes of Excellence'' dozens of transplant centers across the country - where covered patients can be evaluated and get on wait lists.
"We encourage members to consider multiple listings at IOE facilities and (they) are covered for the evaluations and listings,'' said Aetna spokeswoman Cynthia B. Michener, noting that coverage and deductibles vary according to the terms of the specific health plan purchased.
To keep down costs, transplant centers often share test results.
"Every center has a different protocol,'' said Eason. "If someone has had what we would consider appropriate testing at another center, we don't do duplicate it. We try to be the patient's advocate and try to minimize duplicate testing whenever possible.''