Why Florida Transplant Patients Who Don't Have Hepatitis C Are Accepting Organs From Donors Who Do
When Dr. Bobby Zervos offers transplant patients the option to accept an organ with hepatitis C, he's prepared for some surprised reactions.
"Some patients and family members look at us like, are we crazy? Did we not get a full night's sleep the night before?" said Zervos, the associate chair of the abdominal transplant center at Cleveland Clinic Florida.
There are more than 5,000 Floridians waiting for organ transplants right now. Most of them have been waiting a year or more to be matched with a donor. But a convergence of developments — including the rise of the opioid epidemic and new treatments for the hepatitis C virus — mean that for South Florida patients who are willing to accept an organ with hep C, the pool of potential donors has gotten bigger.
The first step, Zervos said, is listening and providing reassurance to patients who are anxious and seriously ill.
"Most individuals and families that come to us have been through a lot of obstacles to get to us," he said.
Linda Foranoce remembers having one of those skeptical reactions to Zervos when he presented the hep C option to her husband, Louis Foranoce, who was in kidney failure and had just started dialysis.
"I said here you're sick but you're not sick with hepatitis,” Linda Foranoce said. “And here you're taking somebody's, really, sickness and putting it inside of you."
The Foranoces' misgivings softened as they learned about the successful outcomes in these cases. But it was perspective from Louis Foranoce’s endocrinologist that ultimately convinced him to accept a kidney with hepatitis C.
"She said, 'Are you crazy? You better go for this because you don't know what it is to be on dialysis for a long time,'" Louis Foranoce said.
The odds are now greater that he'll never have to know what that's like; this summer, Louis Foranoce received a new kidney — from a donor who had hep C.
A Virus, Opioids, And New Opportunities
Hepatitis C is a blood-borne virus. It's commonly transmitted through shared needles and sometimes through sex. People who inject drugs like heroin and fentanyl are at especially high risk of getting hep C.
Chronic hep C infections can go undetected for years before damaging the liver enough to cause symptoms — even as the rest of the organs remain pretty healthy. That's part of why, until recently, organs from donors with hep C were generally only given to recipients who already had the virus.
But a few years ago, Dr. Bobby Zervos from the Cleveland Clinic said something deeply troubling happened.
"We had an otherwise healthy organ offer and we had no one on the list to offer these organs to," he said.
The donor with the otherwise healthy organs had hep C and, Zervos said, "we did not have enough individuals with hepatitis C to capture all of those organs."
That event coincided with the explosion of the opioid epidemic.
"Unfortunately with drug overdose and deaths, there's a lot of young donors that are brain dead but, from the neck down, leave behind perfectly healthy organs," Zervos said.
Around this same time, the Food and Drug Administration was starting to approve a new class of treatments for hep C. Called "direct acting antivirals," these new drugs have been shown to cure patients of the virus 99 percent of the time.
"That really changed the landscape," said Dr. Robert Montgomery, a transplant surgeon and director of New York University's Langone Transplant Institute.
Montgomery was part of the first trial that gave those new drugs to transplant patients who didn't have hepatitis C, but were willing to accept organs from donors who did. And it worked; the patients did well and the medications cleared them of the virus.
The medications cost upwards of $90,000 — roughly about the sameas a year of dialysis for someone waiting to get a kidney. For the most part, Zervos and Montgomery said insurers have been willing to cover the drugs for transplant patients who develop the virus.
The hepatitis C treatment protocol works so well with transplant patients that last year, when Montgomery himself needed a heart transplant, he accepted a heart from a donor with the virus.
"Why not use those organs to get people transplanted a lot faster who didn't have hepatitis C, and then treat them?" said Montgomery.
Expanding The Donor Pool
At Cleveland Clinic Florida, Zervos and the transplant team took all these new developments and put together a plan. They started offering patients on transplant waiting lists the option to accept a hepatitis C organ if a match became available and the patients were willing to take a course of the direct acting antivirals.
This option can shorten the time a patient spends on the waitlist by expanding the donor pool. If a patient is number seven on the list, and the six people ahead of her decline a matching kidney from a donor with hepatitis C, that organ is hers.
Those odds worked out for Louis Foranoce. He said that 10 days after agreeing to accept a hepatitis C organ, he matched with a donor.
For perspective: more than half of Floridians waitlisted for a kidney have been waiting over a year.
Even for someone accepting an organ from a hep C-positive donor, Louis was pretty lucky — but this kind of hep C transplant is becoming more common.
"About 15 percent of our donors now have died of drug overdoses, and 25 percent of them have hepatitis C," said Montgomery.
Cleveland Clinic Florida gives patients the option to accept healthy kidneys, hearts and livers with hepatitis C. The Miami Transplant Institute, a partnership between Jackson Health System and the University of Miami, also offers the option to accept an organ with hep C. And elsewhere in the country, surgeons are beginning to see positive results with lung transplants from donors with hep C.
According to national data from the United Network for Organ Sharing, the organization that manages America's transplant registries, in 2015 there were only 51 organs transplanted from donors who tested positive for hepatitis C to recipients who were negative.
So far this year, about a thousand of these organs have been transplanted.
Zervos said he feels obligated to make sure lifesaving organs aren't wasted.