Searching For A Fairer Way To Distribute Donor Livers

18 hours ago
Originally published on September 26, 2017 12:11 pm

Himanshu Patel ran a convenience store in Georgia until about a year ago, when his liver failure got so bad he had to quit.

"I just couldn't stand up on my feet at all," says Patel, 39, of Waycross, Ga. "I just had to stop working."

Now, he's waiting anxiously to learn if his doctors have found a liver for him so he can undergo a transplant.

"They told me, 'You will need a liver transplant — without a liver transplant you might not survive,' " Patel says.

Piper Su is waiting, too. She's also 39 but lives about 700 miles north in Alexandria, Va. She's still working as a lawyer, but says it's getting harder and harder.

"I tend to get very tired," Su says. "Often times, I'll have sharp pains in my abdomen from my liver voicing its displeasure. And then I've developed a condition in my legs, which can be very painful."

Patel and Su are among more than 16,000 Americans waiting for a liver transplant because of conditions such as hepatitis, cancer or cirrhosis. But only about 7,000 livers are donated each year. So they know their odds aren't great.

And their chances also vary based on where they live.

"In some areas of the country, patients have to wait a lot longer than in other areas," says Julie Heimbach, a transplant surgeon at the Mayo Clinic. "They have to get much sicker before they can access a liver transplant, depending on where they live."

Heimbach chairs a committee for the United Network for Organ Sharing, the nation's organ transplant network, which has proposed a new system for distributing livers.

"We're just trying to make it just a little bit more equal so that there's not such a disparity depending on where you live," Heimbach says.

Under the current system, the nation is divided into 11 regions, and the sickest patient on the waiting list in each region gets the next compatible liver that becomes available in that region.

In some regions, patients have to wait until they're facing a 93 percent risk of dying within the next three months. In other regions, patients get transplants when their risk is only 13 percent, according to UNOS.

One big reason for that is that more organs become available in some places than others. And that's partly because of the way people die — there are more deaths in ways that leave the victims eligible to be organ donors, such as car accidents and strokes.

"The heroin epidemic has actually led to a lot of organ donors because when people become overdosed they stop breathing and they become brain dead," Heimbach says. "And certain areas of the country have more or less of that particular problem."

Generally, more livers tend to become available in rural places than in more urban places, such as California, New York City and the Washington, D.C., area.

To try to alleviate the geographic disparities, the new system would expand access to livers to patients listed at a transplant center within a 150 nautical-mile radius of the hospital where the liver is donated, even if it's in a different region.

"Whether they're in or out of the region, as long as they're in that 150-mile circle they would be able to access that donor," Heimbach says. "So it basically kind of expands the regions."

The new plan is the latest attempt by UNOS to address inequities in allocation. It was developed after concerns arose over a previous proposal. But the new plan is still stirring concerns.

"This is life and death stuff for real people," says Raymond Lynch, a transplant surgeon at Emory University in Atlanta.

"When you export a liver, you import a death," Lynch says. "So if you move an organ from one place to another, you've left a hole in that original place and that hole is going to turn into a death because now somebody in that original place doesn't have an organ transplant."

Lynch and others argue that under the new plan, livers would tend to get shifted from less affluent, rural areas to more affluent, urban places.

"We would be hurting those people who are most vulnerable in the U.S. — minorities, people with reduced income, people with reduced access to primary care physicians, people who live in rural locations," Lynch says. "All those people already do worse."

Critics argue that more should be done to increase donations in areas where patients have to wait longer.

"We know that organ donation rates vary greatly across the country," says David Goldberg, an assistant professor of medicine and epidemiology at the University of Pennsylvania who studies access to organ donation.

"New York, which is 90 miles from where I live in Philadelphia, has donation rates that are half of that in Philadelphia and Pennsylvania," Goldberg says. "So if the donation rates in New York were the same as in Philadelphia, it would be a nonissue."

Heimbach agrees that more should be done to increase organ donation rates around the country. But she disputes the argument that the new system would cost lives or make the process less fair.

"It would not be less fair — it would be more fair," Heimbach says. "It's not one-way sharing — where the lives are being taken from one particular part of the country. It's a broader sharing so that the sickest patient, no matter where they are, would access the livers."

Su hopes the new plan will help save her life. Because livers are so scarce where she lives, Su has been traveling to other parts of the country to try to get on waiting lists in as many places as she can.

"It's been a bit of an odyssey," Su says. "I think the best move for everyone involved is to try to move toward, you know, the most fair system possible that gets organs to those who need them most quickly."

But Patel, who lives in a place where more livers are available, worries the change would mean he would have to wait longer for his transplant.

"If I go tomorrow and they tell me I have to wait another six months or something like that, that might put me in a worry," he says. "I don't know if I'm going not make it for six months."

The public has until Oct. 2 to comment on the proposal.

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This is FRESH AIR. In July, I interviewed Haroon Moghul after the publication of his memoir, "How To Be A Muslim: An American Story." Moghul is a first-generation American whose parents are from Pakistan. We've invited him back this time to read an essay he wrote for us about the time a seemingly minor encounter at a border crossing turned his life around.

HAROON MOGHUL: She'd been the love of my life. We were together for a dozen years, and then it was over. I was 32, bipolar, and divorce felt like the end of the world. I was so depressed I was hospitalized. Friends told me I needed time away to begin to heal. They helped me move to Dubai where I could be with family. But weeks passed, and I hardly recovered. I was no longer suicidal, it's true, but I didn't really care if I was alive either. Loved ones insisted that I should keep living until one day I'd want to.

So every 40 days, I'd drive to the nearest international border, leave Dubai, promptly make a U-turn and come back in. I'd get a new tourist visa and another 40 days to find a reason to live. I was always nervous on these journeys. In the years since my passport picture had been taken, I'd lost 60 pounds. I hardly looked like myself, and each time I approached a border, I feared I'd be denied a visa or, worse, deported.

On just one such trip, everything was going deceptively smoothly. I pulled up to a police officer sitting on what looked like a lawn chair outside what looked like a tollbooth. He wore gold-rimmed Ray-Bans, as all uniformed agents of Arab nations should. He appeared not to have a care in the world. Of course, when I handed over my passport, he flipped to the photograph page and burst out laughing. That seemed to be it though. He wordlessly stamped my passport and waved me forward. But I was not 15 minutes into the drive back that the car behind me, license plates from Oman, flashed its headlights. The driver gestured for me to pull over. Maybe in the desert wild he intended to kidnap, kill or eat me, but maybe he just needed help. Car trouble out here could mean death.

We both pulled into the breakdown lane and exited our cars. But as I walked towards him, he started backing up like he was scared of me. Keeping his distance, he said, you go back. Go back, I asked. Police say you go back, he explained. Then he dove into his car and rocketed away. Was this some kind of gambit to steal my car and leave me stranded? But fearing I might be arrested otherwise, I returned to the same tollbooth and the same officer regarded me with great confusion. And then he smiled, remembering why he'd called me back. He yelled, Muhammad. Another officer, presumably Muhammad, rushed over. Show him, the tollbooth officer ordered, your passport. My jaw all but fell to the floor. The officer had deputized the citizen of another country just to show his friend my fat picture.

Before I could say anything, he snatched my passport and opened the picture page for Muhammad. You were so fat, he cried. Muhammad laughed but then turned deadly serious. How, Muhammad asked with genuine curiosity, did you lose so much weight? What was I going to say, that the doctor's best guess was that I had an autoimmune disorder, that I lost my job, my savings, my apartment, my wife, my reasons to go on living, that I hardly cared how I looked or if I ate? Instead, I did the Muslim equivalent of throwing my hands in the air. Alhamdulillah, I said. The Arabic means, simply, praise the Lord. But I'd whispered it, lending the moment a sacred aura I'd not intended.

In Dubai, they suffer First World problems, but they process them with 7th-century spirituality. Alhamdulillah, the officers repeated, transformed, like they'd never laughed at me at all. We might have come from different ends of the Earth, but in that brief moment, we became one. And then the encounter was over.

On the drive back, I suddenly burst out laughing. I hadn't laughed that hard since my divorce. I didn't think I ever would. But the whole thing was so ridiculous. I knew then that I'd tell everyone what had happened. I'd pass my passport around, too, for dramatic effect. And then it hit me. Alongside the pain of the past and the numbness of the present, there was something else. I knew I wanted to stick around long enough to tell this story.

GROSS: Haroon Moghul is the author of "How To Be A Muslim: An American Story" and a fellow in Jewish-Muslim relations at the Shalom Hartman Institute. Tomorrow on FRESH AIR, we'll talk about the new HBO series "The Deuce." It's set in Times Square, 42nd Street, in the early '70s when it was a strip for prostitutes, pimps and peep shows. It follows the money and who exploits and who gets exploited. It's also about the rise of the porn industry. Our guests will be the show's creators, David Simon, who also created HBO's "The Wire," and "Treme," and George Pelecanos, who wrote for both of those shows. I hope you'll join us.


GROSS: FRESH AIR's executive producer is Danny Miller. Our interviews and reviews are produced and edited by Amy Salit, Phyllis Myers, Sam Briger, Lauren Krenzel, Heidi Saman, Therese Madden, Mooj Zadie and Thea Chaloner. I'm Terry Gross. Transcript provided by NPR, Copyright NPR.