We’ve entered a new era in organ donation. One in which giving a diseased organ can save a life thanks to new medications which can cure hepatitis C, a blood-borne infection passed on through IV drug use and unprotected sex.
Not everyone would be willing to take a liver with hepatitis C. But for the groundbreaking surgeons and their patients, it’s a leap of faith that’s paving the way for a longer life.
Brad Goodman knows what it’s like to make a climb. Last summer, the 37-year-old didn’t have the strength to play with his three girls. That’s because last year, he was dying.
“It was very bad. I was in and out of the hospital frequently with infections,” he said. “Lost lots of weight and muscle mass.”
Goodman learned in 2005 he had an auto-immune disease called Primary Sclerosing Cholangitis or PSC. His body was attacking his own liver, specifically the bile ducts or passageways that help rid ammonia and waste from the blood stream. The disease can lead to a lethal form of cancer.
University of Chicago Medicine liver specialist Dr Michael Charlton helped guide Goodman through the process.
“He was someone who had life-threatening liver disease and it had made him emaciated,” University of Chicago Medicine’s Dr. Michael Charlton said. “And that’s when we had the discussion about whether there was an interest in a hep C positive donor.”
Goodman was placed on the wait list for a new liver. After nearly two years, and while his young family was growing, he received a call in August 2017 that an organ was available.
“What happens is, an organ is offered. It’s offered to the person with the highest score for priority, and if that person turns it down it keeps coming down,” Dr Charlton said.
It was a process that played out in Goodman’s case. But not just a few transplant teams turned down the available organ. It was passed over more than 200 times. That’s likely because the liver was infected with the hepatitis C virus.
“I knew that there are so many people on the transplant list and so many people that don’t make it and what a lucky moment this was for my family,” Goodman said.
Typically, an organ from a donor with hepatitis C would be discarded, or in some cases, transplanted in a patient already infected with the virus. Liver failure is common in hep C patients.
But in 2013, everything changed. Cure rates for hep C that once hovered between 30 and 50 percent jumped to nearly 100 percent when new, direct-acting anti-virals hit the market.
“It went from being the hardest thing to treat in clinic to almost the simplest thing I have to deal with in my practice now,” Dr Charlton said. “This totally transformed the number of people who were developing liver failure related to hep C and also our ability to manage hep C following liver transplantation.”
“My chances of getting a liver at the stage I was at, even though I was very ill, were not very strong,” Goodman said. “And being willing to take a hepatitis C positive liver and then curing the hep C after transplant, gave me a new chance at life and one that certainly couldn’t be turned down.”
With a pill taken each day over the course of three months, Goodman was cured of the hep C he inherited during his transplant.
“When you have a liver transplant you have many, many medications that you are taking anyway, so taking one extra is not a big deal,” he said.
Dr. Charlton had been down the road before as part of a team in Utah that performed the first US transplant of its kind, placing a hep C positive liver in a hep C negative patient.
“It showed us as we expected that treating hepatitis c following liver transplantation was no longer a difficult hurdle,” he said.
That patient was Lorenzo Swank, who is now living and working in Seoul, where he helps companies enter the Korean and US marketplaces. And in 2016, he helped lead the way for patients like him to enter a new era in organ donation.
“In terms of a risk, I would say I was looking at the next best alternative, and my next best alternative was very likely death,” Swank said.
Suffering with the same disease that plagued Goodman, PSC, Swank spent years in and out of the hospital with life-threatening infections.
“My quality of life was so poor I was hoping that I would either get a transplant or I would quickly die,” Swank said.
In the hours leading up to his surgery two years ago, the infected organ that went on to save Swank’s life had been passed over more than 700 times. Some of those patients are still on the wait list, some have been transplanted and some have died.
“And if it weren’t for that one organ donor, I would not be here,” Swank said.
“I know that there are a lot of people that for whatever reason would not take a hepatitis C positive liver. I feel really lucky,” Goodman said. “It’s my duty to be able to tell people as a patient, it’s fine, you should do this. In my case it saved my life.”
There are nearly 14,000 patients waiting for a liver right now. So far this year, only 5,400 transplants have been performed. But the number of patients on the wait list is decreasing. However, there`s a twist to this story. Needle drug use fueled by the opioid epidemic has caused a second wave of hep C infections. Add to that surging numbers of liver disease caused by obesity and alcohol abuse. All together that means there’s still a great need for organs.