iran Shelat was willing to try almost anything to get off dialysis. Every night, the civil engineer was hooked up to a machine for 10 to 12 hours, often suffering excruciating muscle aches. And he would need to live this way until he could get a kidney transplant — which could take up to 10 years.
So when a doctor at the University of Pennsylvania offered him a transplant last summer, Shelat jumped at the chance, even though there was a catch: The organ donor had hepatitis C, and Shelat stood a good chance of contracting it.
As many as 1,000 such infected kidneys are thrown away each year in the United States, but new medications have made hepatitis C curable — and made it possible to consider using infected organs for transplants. That could cut down on the wait time not just for kidneys but also other organs, especially hearts.
“That’s where the big benefit is going to come,” said Dr. Richard N. Formica Jr., director of transplant medicine at the Yale University School of Medicine.
In 2016, there were 14,501 kidneys made available for transplantation in the US, while roughly 100,000 people waited for a new kidney, he said. The same year, there were 3,208 heart transplants, Formica said, and nearly 4,000 people waited for one. Adding hundreds more organs to that much smaller pool, he said, “would be a big deal.”
First, though, researchers need to know whether transplanting infected organs is safe — which is where Shelat came in. He was one of 10 volunteers to receive a kidney transplant within the last year from a donor infected with hepatitis C.
All 10 of the patients contracted hepatitis C, but all were cured of it so quickly that none suffered any effects of the disease. And all of them are doing well with their transplant, according to the study, published late last month in the New England Journal of Medicine.
Now, the University of Pennsylvania researchers told STAT, they are getting ready to test transplanting hepatitis C-infected hearts.
Today, most of the hearts donated by hepatitis C-infected patients are wasted, said Dr. David Goldberg, a liver transplant specialist who helped lead the Penn research. Only patients who themselves have the infection can get these organs. Adding those hearts to the broader pool would make a huge difference. “The opportunity is large,” he said.
Donors infected with hepatitis C tend to be younger than non-infected donors, with an average age of just 37. They often acquired their infection through drug addiction and then died young, leaving relatively healthy organs, despite their history.
Fifteen years ago, there were perhaps only 100 such organs donated from people who had overdosed. Today, because of the opioid epidemic, that number is closer to 1,200 a year, Goldberg said, and their families hope donation will mean their tragic end won’t be completely in vain.
Participants in Penn’s trial said they were extremely grateful for their new kidneys, and didn’t even notice the extra pill a day they took for 12 weeks to rid them of hepatitis C.
“I’m glad I did it and I’d do it again,” said Irma Hendricks, 66, a study participant from East Stroudsburg, Pa. Hendricks plans to buy a cake on June 12 to celebrate the anniversary of her transplant. “I’m 66 and I’m living again.”
Dr. Peter Reese, a kidney specialist who helped lead the research, said he had hoped that by treating the infections as quickly as they could be detected — usually about three days after the transplant — the patients would be rapidly cured and would never know they had been infected. That proved true for Hendricks, Shelat, and the others.
Not every patient he approached wanted to risk getting an infected organ, Goldberg said. Some were uncomfortable with any kind of experimental therapy; others knew someone who’d suffered from hepatitis and simply shut down the minute they heard they might get the infection.
The 10 who volunteered for the study had either never heard of hepatitis C or were more concerned about getting off dialysis than about catching an infection that could very likely be cured, Goldberg said. Since late 2013, there have been three medications approved to treat hepatitis C, Sovaldi and Harvoni from Gilead, and, more recently, Merck’s Zepatier. All have reported cure rates above 90 percent.
“I’m glad I did it and I’d do it again. I’m 66 and I’m living again.”
Irma Hendricks, received a kidney from a donor infected with hepatitis C
Hendricks said she was worried about the transplant surgery, but not about contracting hepatitis C. She’d seen ads on TV touting the new medications and she felt sure it wouldn’t be a problem.
Her main concern, she said, was getting rid of the debilitating headaches that plagued her nearly every day on dialysis. They haven’t returned since her surgery, and her blood pressure has fallen back to a normal range. “It’s amazing what a kidney does for your body,” she said.
Shelat, 63, of Yardley, Pa., said he’s now able to travel again, without packing an extra suitcase for his dialysis machine and worrying the whole time that something will go wrong.
And Maureen Riley, also 63, of Plains, Pa., said she would have done almost anything to cut down on the three-day-a-week, four-hour-long sessions of dialysis.
“When you have other responsibilities, you do watch the clock,” said Riley, who cares for a grown daughter with cerebral palsy. “One nurse said to me, ‘Are you sure you want to take a hep C kidney?’ I said, ‘Do you see anybody offering any others?’”
Cost remains a key issue for hepatitis C transplants. Drugs to treat the infection can run as high as $95,000 for a 12-week course — and insurance companies haven’t yet been convinced to pay for giving the medication to transplant patients, though it costs less than a year’s worth of dialysis, said Formica, who was not involved in the Penn research.
Merck donated medication for the 10 patients in the trial. “Beyond trials, we have to find a way to pay for it through insurance,” Reese said. “The single biggest barrier is being able to guarantee that the hepatitis C can be treated, even before the patients sign up for the program. I think that’s the big mountain ahead.”
Goldberg, Reese and, Formica all said that the Penn study should pave the way for more trials with hepatitis C-infected organs, and ultimately, if they are successful, to adding the infected organs to the larger pool.
“Transplant is so transformative: It makes them feel better, it makes them live longer,” Reese said, adding that many people reengage in their work, family, and social life after a transplant. “I think it can make a humungous difference in the lives of 1,000 people.”
Shelat said he’s thrilled that his daughter, a nurse, and other medically trained family members helped convince him to go ahead with the surgery.
Medication was largely able to keep his kidney disease under control for two decades. But in 2009, the illness began taking over his life — leading to swelling, exhaustion, and regular trips to the emergency room. His doctor started him on home dialysis in 2015, and his name was added to the wait list for a new kidney.
He’d been on dialysis for about a year when Goldberg called and offered him a place in the trial. Shelat’s results since the operation last August have affirmed his decision to participate.
Shelat said he’s back to working four to six hours a day at the New Jersey Department of Transportation, going to the gym regularly, and practicing his beloved tabla Indian drumming. He’s sleeping well, suffering no more cramps, and filled with more energy than he ever had on dialysis.
He now wants to counsel others who are considering getting a transplant from a hepatitis C-infected donor: “I want them to feel just as good as I’m feeling now and go on with their lives.”
Correction: An earlier version of this story incorrectly described Dr. Peter Reese’s specialty.