A shortage of organs from deceased donors has prompted UPMC to shift its focus to transplants using live donors, a surgery some experts consider risky but others view as giving patients better survival odds.

Deceased-donor transplants — once the bread and butter of UPMC’s internationally known transplant program — have declined at the Pittsburgh-based hospital system.

Surgeons last year performed 304 deceased-donor transplants, compared with 678 in 1988, the first year data was collected by the United Network for Organ Sharing (UNOS), the nonprofit that manages the U.S. transplant system.

In the past 10 years, deceased-­donor transplants at UPMC have declined by about 30%.

By contrast, live-donor transplants have more than doubled since 2012, according to UNOS. Surgeons in 2012 performed 54 live-donor transplants, compared with 120 in 2018. This year, 144 live-donor transplants have been performed through Nov. 30.

UPMC stands out from other large transplant centers across the country and centers in UNOS Region 2 as one of the few systems turning away from deceased-donor transplantation. In addition to a stagnant supply of organs, UPMC faces increased competition from growing transplant centers.

The living-donor surgery has been practiced and perfected so much that it should become a first-choice option for patients, said Dr. Abhinav Humar, UPMC’s chief of transplant surgery.

“It’s not a last resort. It’s not experimental,” Humar said.

UPMC has made a conscious decision to develop its living-donor services, calling it an “organizational focus.” Humar said living donation allows physicians more preparation time for surgery, as well as the ability to put the donor through a comprehensive health screening process. Living-donor transplants also offer the chance to perform surgery before the recipient is too sick to recover, increasing the chances that the transplant will be successful, he said.

About 1,000 people are on the waiting list for transplants at UPMC hospitals. Last year, 68 people died while waiting, according to UNOS data.

Humar said more than half of the transplants he performs use organs from living donors. And many surgeons say living-donor recipients benefit from good outcomes. For instance, about 92% of UPMC’s liver transplant recipients in 2018 were alive one year after surgery, according to the Scientific Registry of Transplant Recipients.

“I’ve probably done more living-donor transplants than anyone in the country,” Humar said.

But living-donor transplants can pose significant risks, as they expose a healthy person to the risks and recovery of an elective surgery: problems such as infections, hernias, blood clots and wound complications.

At Allegheny General Hospital, UPMC’s chief rival in Pittsburgh, transplants with cadaver organs still outnumber living-donor transplants.

“As a whole, transplantation is risky,” said Dr. Ngoc Thai, chair of surgery for Allegheny Health Network, parent of Allegheny General. “It is more risky to do a living related transplant, because you’re subjecting a healthy person to an operation. You have to take that very, very seriously.”

Even the late Dr. Thomas Starzl, who performed the world’s first successful liver transplant in 1967 and who led UPMC’s transplantation program to widespread acclaim, feared the risks of living donation. Starzl, who died in 2017, spent the last years of his life studying complications in live-donor liver transplants. He authored a 2009 study that detailed complications connected with live-donor liver surgery.

Thai said Allegheny General hasn’t been as affected by the stagnant availability of cadaver organs. The hospital has been able to obtain more cadaver organs almost every year by being “responsibly aggressive,” Thai said, often claiming organs that other hospitals turned down.

Thai said that while there is a place for living-donor transplants, it isn’t the best choice for every patient or every organ. Data from the nation’s top transplant centers tend to support this notion.

But at UPMC, the mood is totally different.

The only option

UPMC’s reputation for living-donor transplantation is what brought the Collins family all the way to Pittsburgh from Orlando, Fla.

Jordan Collins was diagnosed with primary sclerosing cholangitis when he was 10. The disease causes inflammation and scarring of the liver and gallbladder. The family knew he had only about 10 years before he would need a liver transplant. He’s now 21.

Collins had been hoping for a deceased-donor transplant. Cadaver livers are allocated to patients based on a patient’s Model of End Stage Liver Disease (MELD) score, a rating from 6 to 40 used to determine a patient’s level of need. “Acceptance points” were earned by doctor recommendation. At the beginning of 2019, Collins’ score was 22.

Waiting for the cadaver organ was grueling. They were living with a packed suitcase by the door, waiting for one of the three nearby hospitals to receive a matching liver. Once, they got a call from Mayo Clinic telling them to get ready, a liver was available.

Within five minutes, they got another call. The liver wasn’t a match, after all.

In the meantime, Jordan’s health began a sharp decline around age 16, and especially as he started approaching the 10-year mark. He struggled to keep weight on as his spleen enlarged and impeded into his stomach. Ammonia began building up in his brain, putting him into a “fog.” He stopped driving. He started vomiting blood. He had regular endoscopies. Veins would rupture, causing internal bleeding.

“You don’t have a normal life,” said Collins, who dropped out of college as a sophomore, unable to manage both his schoolwork and his health. “I mean, you know how teenagers are. It’s easier not to hang out with a kid with the liver disease.”

While Jordan got sicker, the allocation process for organs was overhauled. The MELD score would now be determined solely by blood test results, rather than doctor recommendations. This was an attempt to level the playing field but puts patients with rare conditions like Jordan at a disadvantage. In April, Jordan learned that his score dropped to 13, and he knew he wouldn’t get a liver for at least another year.

The family decided living-donor transplantation was the only option.

“It was just hard watching him get sicker and sicker,” said Marla Collins, Jordan’s mother.

Both of his parents began the long process of testing to find out if they were a match. Marla Collins turned out to be a match, but there was still one more obstacle. Their hospital in Miami, where they had done all their preparations, didn’t have an established living-donor program at the time.

UPMC’s program, on the other hand, was growing — especially for liver transplants.

Within three weeks of contacting the hospital, the surgery was scheduled. In an October procedure at UPMC Montefiore in Oakland, Marla Collins donated about 70% of her liver to Jordan.

The future of transplantation

The number of transplant surgeries is rising nationwide, involving both living and deceased donors. Total transplants at UCLA Medical Center have increased 178% since 1988; at New York Presbyterian, the increase is 340%.

But at UPMC, the decline in deceased-donor transplants has caused a total transplant decline of 38%.

Dr. Randy Schaffer, living-donor chair at UNOS, understands why UPMC isn’t being allocated as many deceased donations as they did when they were the only transplant center in the region and one of the largest in the country.

“UPMC was the primary transplant center across the northeast in liver,” Schaffer said. “Their historic reach was broad, and they retrieved organs from parts of the country that did not have the same type of transplant organ process.”

Other transplant centers are growing in Region 2, a geographic area that includes Pennsylvania and seven other states. UPMC must essentially share the wealth, Schaffer said.

In order to achieve any program growth, hospital chains cannot simply rely on the supply of organs from deceased donors, which are allocated all over the country based on the needs of the patient, said Laura Aguiar of Transplant Solutions, a national consultancy based in Arizona.

While the population and need for organ transplants increases, the number of donors has remained mostly consistent over the past three decades. Misconceptions about organ donation may be to blame for the stagnant amount of donors, such as the erroneous belief that if a person is in a car accident, doctors won’t try to save their life. Some people think they’re too old to become a donor, but there is no age limit for donation, experts say.

Aguiar said focusing on living-donor transplants is something that her company frequently recommends to centers looking to expand.

“That’s the only option, just because of limitations of what’s available when it comes to deceased donors,” Aguiar said.

For now, UPMC is thriving in living donations — still considered a cutting edge and complex task.

Marla Collins said she felt soreness after the surgery and she was incredibly tired. But now, she feels as if it was nothing, in the long run. If she could do it again, she would, Collins said — even for a stranger.

Her son’s recovery is slower, but he is finally able to plan for the future, no longer tethered to the small, four-hour radius of his Florida transplant centers.

He’s planning to visit a friend in Seattle next summer, and he has a deferred enrollment at Babson College in the Boston area.

“I haven’t been able to go anywhere” during the years of waiting for a donor, Jordan Collins said. “This is the best part of it.”

Next up: He’s plotting a journey to Europe.