Last summer, Seth Doraiswami, a stonemason from Belmont, Massachusetts planned a trip to Wisconsin, to get a new liver.
Doraiswami, 33, was born with a liver disease called biliary atresia, which causes bile ducts to become inflamed and the liver to scar. At 11 weeks old he had a risky procedure done that saved his life, and for years he took antibiotics to stay healthy. But in December of 2014, while he was living in Italy with his wife and son, the disease caught up with him again.
This story was produced by WHYY's The Pulse.
"I remember one night in particular, I was just up the whole night in pain, with heating pads all over my stomach and my back," Doraiswami recalled in an interview at his parents' house in August. "I called my mom in the U.S. and I said, 'Mom, I don't think I'm going to make it back for awhile.'"
He recuperated in a hospital for a couple weeks, then, in January of 2015, he returned to Massachusetts to be near his long time doctor at Massachusetts General Hospital.
But Massachusetts is not the best place to be if you need a new liver.
In the U.S., patients are considered for a liver transplant in order of urgency, amongst other factors. But because of the current system, some hospitals perform transplants on patients who are not as sick as others. Patients relocate to those areas, hoping for better chances. Sommer Gentry, a mathematician at the U.S. Naval Academy and research associate at Johns Hopkins School of Medicine, found that travelers are 74 percent more likely to receive a transplant than similar patients who remain in their home region.
Getting on a waitlist in another location is not simple. For Doraiswami, entering the world of medical tourism meant he would temporarily leave his doctor, meet a whole new team, go through extensive tests and find a place to live for an unknown amount of time.
"If you have to travel the globe to get one, then that's what you're going to have to do," Doraiswami said. "That's just the nature of the game at this point."
In August Doraiswami changed travel plans when an appointment opened up at the Mayo Clinic in Jacksonville, Florida. He cancelled flights to Wisconsin and got a one-way ticket to Jacksonville.
Geographic disparities
Since doctors started transplanting organs successfully in the 1950s, geography has played a key role. Organs, it turns out, are time sensitive. The average liver lasts about six hours after being removed from a donor, so poximity matters.
In the 1980s, the national transplant organization called United Network for Organ Sharing, or UNOS, divided the country into 11 official regions. Then, in 2002, UNOS implemented an additional system called Model for End-Stage Liver Disease, or MELD, just for livers. A MELD score rates how sick a patient is on a scale of six to 40, with 40 being the sickest.
Today, a combination of a patient's MELD score and location determines when they'll be offered a compatible organ. The idea is to get the sickest patients transplanted first, but because some centers do liver transplants for patients with lower scores, people who can leave home to get on lists elsewhere do.
"It's really tragic, because the organs should be able to go to the patients wherever they live and not make the patients relocate," said David Mulligan, the chief of transplantation and immunology at Yale-New Haven Hospital in Connecticut.
For the past couple years he's been working on a proposal with the UNOS Liver & Intestinal Organ Transplantation Committee to change the current system by dividing the country into fewer regions. People who can't afford to relocate are at a disadvantage in the current system, Mulligan said, because it's costly.
"The idea is that it's not really fair for people to have to suffer and actually die compared to someone who may live a few states away and can get an organ much more easily," Mulligan added.
Generally, centers in the southeast and central U.S. have better access to organs than centers in the northeast or along the west coast, Mulligan explained. Researchers disagree about why this is the case. It involves a combination of factors that include average lifespan, organ donor rates and the amount of transplant centers in each region.
Redistricting
The point of a redistricting plan is to get patients transplanted around the same score everywhere. This would mean the current 11 regions would morph into four or eight. It would also mean more sharing between states and more livers being flown around.
"I know the middle of the country is fighting hard against redistricting, because they don't want to give up their livers," said Catherine Frenette, the medical director of liver transplantation at Scripps Green Hospital in San Diego, California.
California is part of a region with the highest MELD scores at the time of transplant. Taking care of patients when they are that sick, Frenette said, is hard.
"It's made even more difficult because we know that a four-hour flight away, people are getting transplanted coming in from mowing their lawn because their average MELDs aren't as high," she added.
Some surgeons criticized the redistricting plan. Jonathan Hundley, a surgeon at Piedmont Hospital, in Atlanta, Georgia, said redistricting will only change which patients die because there are only so many livers available–patients who are now in advantageous locations might have to wait longer for a transplant.
"I can say this without any shadow of a doubt...this redistricting would cause more Georgians to die and fewer New Yorkers to die, that's what would happen. There'd still be just as many deaths," Hundley said.
Hundley admitted, as many have, that everyone wants what's best for their patients.
There are also financial stakes. Less transplants mean less money for hospitals and surgeons, just as more transplants mean more money.
"I think money is a significant player in this, but for me and for 99% of physicians around the country it's all about lives," said Richard Gilroy, medical director of liver transplantation at Kansas University Hospital in Kansas.
Final stretch in Jacksonville
Whether redistricting is the answer or not, the current system entices patients to relocate–patients like Seth Doraiswami. Patients coming from Massachusetts General Hospital frequently travel to the southeast for liver transplants, according to research done by Parsia Vagefi, associate surgical director of liver transplantation at Massachusetts General Hospital.
After a few weeks in Jacksonville, the Mayo Clinic put him on the waitlist. He was feeling hopeful.
"They just said 'keep your phone charged, on loud, as loud as it can be, have a little backpack ready,'" he said.
But then, a few weeks later, Doraiswami got deathly ill. His MELD score shot up to 40, and he went into the intensive care unit.
"Maybe close to around midnight, I heard a doctor come into the room start talking to one of my nurses. He came over and just out of the blue announced to me 'we may have a liver, this evening,'" Doraiswami recalled.
On September 24th, in the middle of the night, Doraiswami received a new liver.
A few months later, back in Boston, Seth laughed easily and tossed a ball around with his two year old son, Benjamin.
"If I hadn't done that, then who knows what my fate would've been up here," Doraiswami said.
As for the redistricting plan, the UNOS Liver and Intestinal Committee hopes to have an official proposal ready for public comment this spring.
