Good Luck Getting an Organ Transplant If You're Poor in America

Although hundreds of organ transplant rules have been designed to insure that organs go to the sickest patients who would benefit most from them, a new study has found that patients with more money have an edge over those with less — even if they are not as sick.

Dr. Raymond Givens and his colleagues at Columbia University Medical Center studied organ transplant data from 2000 through 2013 and determined that people who could afford to be on multiple organ transplant waiting lists — which are in different geographic zones and have varying wait times — were often more likely to receive organs than people with just one listing. He and his team presented their findings this week at the American Heart Association's scientific meeting in Orlando.

"It really brings up the issue of fairness," Givens said, explaining that patients with multiple listings were less likely to be hospitalized, for example. "There seems to be multiple indicators that despite being less sick, they're receiving more transplants."

Organ availability varies from place to place. Givens noted that he has treated several well-heeled patients awaiting heart transplants in New York who also traveled to Cedars-Sinai Medical Center in Los Angeles to obtain second transplant listings. But he said that option isn't available to everyone because not only will the patient have to pay for travel and housing in another state, but not all insurance plans cover the additional testing needed to obtain a second listing.

An average of 22 people die in the United States each day awaiting organ transplants, according to the United Network for Organ Sharing (UNOS), a nonprofit organization under contract with the federal government to allocate organs for transplant. There are currently 122,686 people awaiting organ transplants in the US, but only 20,705 transplants have been performed from the start of this year through August.

Patients with multiple listings were more likely to get transplants and less likely to die waiting for them, but they tended to wait longer, according to Givens. These patients made up between 2 percent and 12 percent of all patients listed, depending on which organ they were waiting for.

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The study found that heart transplant patients with multiple listings had a median average gross income of $90,153, but patients with just one listing had a median average gross income of $68,986. There were similar income disparities between patients with single and multiple listings who were waiting for lung, kidney, and liver transplants as well.

"We all know Steve Jobs lived in Northern California and got a liver transplant in a center in Tennessee," said bioethicist Jeffrey Kahn, PhD, of the Berman Institute of Bioethics at Johns Hopkins. "So he's the prototypical example of the person who could go anywhere. Money is no object. Time is no object."

Nevertheless, there was no significant association between the median average gross income and distance patients traveled between transplant centers, Givens said. So even though traveling to a new zone could mean traveling 17 miles from Columbia Medical Center in New York to Newark Beth Israel Medical Center in New Jersey or traveling across the country, having a second listing generally meant that the patient was more likely to have more wealth and more likely to get the transplant.

Kahn wondered whether the data in Givens's study captures all the subtleties of the organ transplant system, which has different rules for allocating different organs. He also wondered whether patients were more likely to seek multiple listings on their own or whether their doctors suggested seeking multiple listings once they learned that the patients could afford to do so.

"Which is the cause and effect here?" he asked.

Givens said that the study idea originated about a year ago when his then three-month-old baby was having trouble breathing and needed to go to the emergency room. Without thinking, Givens grabbed his hospital employee badge in the hopes of skipping the waiting room line. Sure enough, it worked. It was only afterward that Givens thought about what his actions meant.

"It honestly never occurred to me to ask, 'How long has everyone else been waiting?' and, 'Is anyone else's child sicker than mine?' " he said. "The thing about that is that it's the rational thing to do when you or someone you love really needs medical care. You try to get it to them as soon as possible. But I think the real question is, 'Should it be allowed?' "

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According to UNOS spokesperson Joel Newman, patients have been allowed to obtain multiple listings since before UNOS began allocating organs in 1987, but the practice has been called into question three times over the years. When it's come up for a vote, patient advocacy groups have argued that while things like test results and blood types are out of the patients' control, determining whether to obtain a second listing and where to do it allows the patient to be proactive.

"Patient advocates say, 'It's something I can do within my control. Please don't take that option away from me,' " Newman said, though he noted that UNOS is open to discussing the fairness of multiple listings again.

The real problem, however, is that wait times in different transplant zones are not equal, Kahn said. When the country was divided into transplant zones, moving objects over long distances was more of a challenge than it is today. Although some organs are more fragile and difficult to transport, it may be possible to do away with the zones for others.

"The way to make it really fair is to say every organ donation goes to a national pool, which is then allocated out nationally," he reasoned.

Until then, a site called OrganJet.com helps patients travel to other transplant zones to obtain kidney and liver transplants faster. Founded by Carnegie Mellon University business professor Sridhar Tayur, the site doesn't require fees for any of its services.

"I don't play golf, so this is where I would like to spend my money," Tayur said of OrganJet, which helps connect patients with flights. "All costs for OrganJet.com so far have been borne 100 percent from my personal money. It's purely a philanthropy act."

Tayur realized that most people don't know that they can list in multiple centers and improve their chances of getting a transplant sooner. He built OrganJet to help people find transplant centers with shorter wait times by zip code. In his experience, insurance companies often cover the costs associated with travel and testing to obtain a second listing. If the patient can't drive to the secondary transplant center within the necessary eight hours of being alerted that an organ is available, Tayur connects the patient with the owners of unused jets and prop planes.

The plane owners ask for between $5,000 and $15,000 to cover pilot costs and fuel, he said. Patients often raise this money in their churches or through other fundraisers. Tayur has also worked with insurance company Highmark Blue Cross Blue Shield to convince it to cover private plane costs because the insurance company stands to save hundreds of thousands of dollars on dialysis treatments for patients who obtain a kidney transplant a year earlier at an out-of-town transplant center.

"Everyone talks about Steve Jobs as being the billionaire who did this," Tayur said. "In my view, you can be a high school teacher and do it."

Follow Sydney Lupkin on Twitter: @slupkin Photo via Wikimedia Commons