Did Steve Jobs’ wallet help cut transplant wait?

Apple CEO Steve Jobs’ recent trip to Tennessee to pick himself up a new liver has raised some sticky questions about what money can buy.

Jobs, 54, was diagnosed with a rare form of pancreatic cancer five years ago and had a piece of his pancreas removed. The prognosis with tumors of the pancreas is not good, the cancer can spread to the liver.

First, let me say I wish Jobs the best. This column is being typed on an Apple computer, while an iPod is playing and an iPhone is displaying missed messages on its screen. You would be hard-pressed to find a stronger Apple devotee and Steve Jobs admirer than I am.

But the news that this incredibly wealthy resident of Silicon Valley, Calif., had transplant surgery thousands of miles from his home at the University of Tennessee in Memphis, according to the Wall Street Journal, raises some important questions about access to health care at a time when America is in the midst of a major battle over health reform.

According to data from the United Network for Organ Sharing based in Richmond, Va., the quasi-public agency that distributes donated organs to those on waiting lists around the nation, there were roughly 16,000 people on the national liver waiting list when Jobs got a liver. He was one of 1,581 people who got livers in the United States in the first quarter of this year. Almost none of those people had any form of cancer.

In fact, if Jobs’ tumor has spread from his pancreas into his liver as is likely, some transplant surgeons say that they would not recommend a liver transplant because there is no data that shows a transplant will stop or even slow the spread of the cancer. This raises the question: Is this the best use of a liver?

Not enough is known about Jobs’ condition to say with certainty whether he still has cancer or whether the cancer has spread.

What is known is that Jobs beat very long odds to get a transplant.

Three hurdles to getting an organ
In the United States, three hurdles must be overcome to get an organ. First, you need to have a primary care doctor diagnose that you have a failing organ. Second, you need to gain entry to a transplant center. Third, you have to be selected by both your transplant surgeon and UNOS as the person best suited on the national waiting list of those admitted to various transplant centers as the best recipient.

Jobs did not have problem with the first hurdle. He has plenty of doctors watching him. They found his initial pancreas problem and his subsequent liver problem. Millions of Americans are not so fortunate. They can’t afford a primary care doctor. Some Americans show up at emergency rooms so sick due to failing hearts, livers, lungs and kidneys that they could not possibly survive a transplant. Others simply die without any doctor diagnosing what is going on with their organs. These unlucky patients are rationed out of their chance to get a transplant without even knowing it.

For those who do have a primary care doctor, like Steve Jobs, the next step is to get into a transplant center. This involves getting seen by a specialist, who will perform all sorts of tests both physiological and psychological. Most important, the potential patient must do well on a very precise wallet biopsy performed to ensure they can pay for a surgical procedure that might cost as much as $200,000.

The parents of 17-year-old Nataline Sarkisyan sued insurance giant Cigna Healthcare last year for declining to guarantee payment for a liver transplant at UCLA Medical Center. The family could not pay and she was not admitted to the transplant program. So she died.

Besides a lack of money, other factors that might lead a transplant center to reject a potential liver transplant patient include advanced age, mental illness, addiction, lack of a stable family to help after surgery, being a prisoner, or having other complicating diseases.

Jobs did not face these obstacles to gaining entry to a transplant program. But, he does have a complicating illness so he had to find a transplant center willing to ignore that fact. It was probably easier for a wealthy CEO to do that than it would be for you.

The waiting list is long for livers. But different centers have longer and shorter lists. Patients who are smart or who have savvy primary care doctors know that different transplant centers follow different rules in deciding who to admit and not to admit. Some will bargain a lower fee for a liver transplant for a poor family. Some would view a liver transplant for a person with cancer as a “waste” of an organ. Some might take a chance on a patient with cancer. This likely explains why Jobs went to Tennessee.

According to UNOS, there were 295 newly listed liver patients in Tennessee last year and 1,615 in California.

Shorter wait time in Tennessee
And UNOS data shows the median number of days from getting on the liver waiting list to getting a transplant was 306 nationally, in Tennessee only 48.

By traveling to Memphis, Jobs could drastically increase the odds he would secure a liver and cut the wait time. He also might have tried to gain entry to more transplant centers to increase the odds that he would get a transplant. Jobs or anyone with enough money can ”multiply list” at many centers and, by putting chips on more than one number, boost the odds of winning the transplant lottery. About 3 percent of all those on the national waiting list for livers, hearts and kidneys are listed at more than one program.

Jobs appears to have known exactly how to use his resources to maximize his chances of getting a life-saving transplant. Most Americans do not.

But, regardless of how much money or clout you have, actually getting an organ when one becomes available is the hardest hurdle. Organs are given on the basis of physiological measures of who is most in need, matching of blood type and other biological factors. Getting to the shortest waiting list and finding a transplant center to take him despite his cancer did not guarantee Jobs a liver. There was some amount of luck involved too.

Still, Jobs’ liver transplant shows precisely what is wrong about our nation’s debate over health care. Some say we do not need to reform what American Medical Association officials often refer to as the “finest health care system in the world.” Really?

The current system is hardly fair. People die every day from a lack of good care or the ability to pay for it. The truth is, those with resources can make the system work in their favor. And celebrity, money and the promise of future gifts can help procure access to scarce, life-saving resources.

The health care system is a broken mess, but not because a Steve Jobs can get a liver. Rather, it is because all too often only the wealthy and privileged can take full advantage of the best our health care system has to offer.