Where you live drives wait for liver transplants

WASHINGTON — Doctors dropped another bomb soon after telling Matthew Rosiello it was time for a liver transplant: The 21-year-old isn't likely to get one any time soon in his home state of New York. Consider traveling to Ohio, they advised, where the wait's a lot shorter.

Where you live plays a big role in how sick you are, and how long you wait, before getting a scarce liver transplant — if you survive long enough. Now the network that runs the U.S. organ transplant system is exploring steps to ease some of the disparities. Critics who want more nationwide sharing of donated livers fear any changes won't help enough.

"I'll go anywhere for my son. This is his life," says Matthew's mother, Randy Rosiello of New York City, who has begun researching waiting lists from Ohio to North Carolina as the family debates its next step.

But she doesn't think her son should have to leave his doctors at New York's Mount Sinai Medical Center, or undergo the stress of travel. Plus, she worries, "if I have to go, I'm putting my family into financial ruin."

The nation has a severe shortage of donated livers. More than 16,000 people are awaiting a liver transplant, and just 6,300 a year get one. More than 1,400 others die waiting each year.

Since 2002, the sickest patients have been ranked atop waiting lists to receive a liver from a deceased donor. They're given a so-called MELD score, based on laboratory tests, that predicts their risk of death. Rising scores move them up on the waiting list. The change by all accounts has greatly improved the system, which once was based instead on time spent waiting.

Here's the lingering trouble: Patients with liver failure and would-be donors are not distributed evenly around the country. And the nation is divided into 11 transplant regions that have wide variations in patients and available organs, between regions and within them.

A donated liver is offered first to the sickest patients in the local transplant center, and if there's no good match, then to the sickest patients throughout that transplant region. If there's still no good match, the liver can go to someone who's not as sick — rather than to someone sicker in the next transplant region.

Patients can shop around for shorter lines, even get on more than one list, if they have the means to get to a far-away hospital within hours of a liver becoming available. For instance, Apple CEO Steve Jobs' 2009 liver transplant was in Tennessee, where the wait was much shorter than back home in California.

But Mount Sinai liver transplant chief Dr. Sander Florman says that system isn't fair to those who can't afford to maximize their chances.