But on Oct. 8, the Cleveland Clinic phoned Ganim to say a newly enacted policy required organ transplant donors and recipients be vaccinated against the coronavirus. The Eastlake, Ohio, man had gotten the vaccine — as a transplant patient, he is at risk of developing severe covid-19. But his donor hadn’t. Although she was willing to give up an organ, she did not want to get the shot.
Ganim, a 52-year-old father of two who has been living with polycystic kidney disease for more than two decades, would need to find someone else.
“He was shocked — kind of speechless. He didn’t know what to say,” said his wife, Debi Ganim, who stressed that he has always received excellent care. “I asked him repeatedly, like, ‘That’s it?’”
She added: “We waited so long. He waited so long.”
The family’s predicament came to light as transplant centers in several states enact similar policies, citing the danger the virus poses to organ donation recipients. The move has pushed some of the most vulnerable patients into the national battle over vaccine mandates.
Doctors say the vaccine is a must for transplant patients, who are immunosuppressed and at risk of severe covid-19. Some people who are immunosuppressed do not mount an effective antibody response against the virus, even after being vaccinated. Yet a very small but vocal contingent of transplant patients and donors are fighting such requirements, arguing that care should not hinge on vaccination status.
The stakes couldn’t be higher for transplant recipients, with a new organ potentially meaning the difference between life or death. Their cases reveal the growing cost of forgoing the coronavirus shot — and how entrenched anti-vaccine beliefs can be.
Rules requiring coronavirus vaccination for transplant patients and donors began cropping up in the past few months, as the delta variant ravaged the nation and the American Society of Transplantation issued guidance recommending the shots. The decision is left to each transplant center, leading to a patchwork of policies emerging across the United States.
In addition to the Cleveland Clinic, vaccine requirements are in effect at health-care systems including University Hospitals in Ohio, UCHealth in Colorado, Geisinger Medical Group in Pennsylvania and the University of Washington.
It’s not clear how many other medical facilities have enacted such a measure. The Department of Health and Human Services said it and the Organ Procurement and Transplant Network have not “set any specific guidance on vaccination status for organ recipients nor living organ donors.”
Deepali Kumar, an infectious-disease physician and president-elect of the American Society of Transplantation, said she believes vaccine requirements are either in place or being discussed at all medical facilities, although her organization is not formally tracking the number.
“I think it’s really at the front and center of everybody’s minds,” she said.
Organs are a scarce resource, with kidneys representing the greatest need despite the fact they can be given by living donors. Nationally in 2020, there were 91,099 people waiting for a kidney donation and just 22,817 transplants performed. An estimated 17 people die each day while waiting.
To ensure the best chance of success for the limited number of organs available for donation, transplant centers may require potential recipients to take steps such as giving up smoking, getting a yearly flu shot, submitting to other vaccinations or adhering to a medical treatment plan.
“We as transplant physicians have a duty to protect this gift,” Kumar said. “We have this duty to also make sure that our recipients have the best outcomes.”
The pandemic has brought new challenges for those involved in the lifesaving work of organ transplantation. Living and deceased donors are screened for coronavirus infections out of concern that the highly contagious virus could be passed to the recipient unwittingly.
In the fall of 2020, a woman came down with a serious case of covid-19 that was later traced back to the lungs she received in a transplant. She died two months later.
The case, which happened in Michigan, was considered extremely isolated, with doctors calling the risk of such incidents low. But it demonstrated the importance of carefully testing for potential coronavirus infections.
In requiring vaccination against the virus, hospitals point to research showing the virus is particularly deadly for transplant patients, who take drugs that suppress the immune system to stop the body from rejecting the new organ. Studies estimate the mortality rate of transplant patients who contract covid-19 at about 20 to 30 percent.
The Cleveland Clinic described the coronavirus shots as “particularly important in these patients” in a statement to The Washington Post, noting that vaccination is the best way to prevent serious illness and death from covid. Geisinger Chief Medical Officer Alfred Casale said in an interview that the virulence of the virus, coupled with the aggressiveness of the delta variant, created “a perfect storm” for transplant patients.
“People don’t get transplanted willy-nilly,” he said. “They’re transplanted because they have a serious problem. Then you’re going to immunosuppress them. And if we have an effective way to minimize the risk of them getting a serious infection on top of that, it’s irresponsible to not take care of that — to not do that.”
Ethical considerations come into play when determining who is eligible for a transplant. But while some have argued that mandating coronavirus vaccinations wades into thorny ethical territory, Casale said those claims miss the mark.
“I understand that they may be well-intentioned, but I think they’re ill-advised and ill-informed,” he said. “I see it as ethically irresponsible to do something against your best clinical judgment.”
Yet even faced with what doctors characterize as a life-threatening vulnerability to covid, some Americans in need of new organs have gone public as unwilling to be vaccinated — no matter the consequences.
Leilani Lutali, a born-again Christian in Colorado, emerged last month as the face of vaccine-opposed transplant patients when she said her religious beliefs prohibited her from getting the shot as required for a kidney transplant at UCHealth. Lutali, 56, told the Associated Press that she objected to the use of fetal cell lines in vaccine development and testing. (Fetal cell lines are lab clones of cells from elective abortions performed decades ago; they were used in creating many common medications.)
Lutali’s stance gained public attention when it was championed by Colorado state Rep. Tim Geitner (R), who called the health system’s position “disgusting.” Despite the stakes, Lutali told the news service she does not fear death, as she believes in the afterlife. The Washington Post could not reach her for comment.
Sherry Breen of Muncy, Pa., a mother of two who has end-stage kidney disease, said she isn’t afraid either, noting that “no one’s promised another day.” The 40-year-old woman spent eight years on the kidney transplant wait list, and five years on dialysis, before reaching the top this year. But when Geisinger Medical Center notified her she would have to get vaccinated against the coronavirus to remain eligible, she allowed her name to go inactive.
In an interview, she relayed a host of concerns about the vaccines. Chief among them: her fear they are too new and might cause symptoms her weakened immune system would struggle to fight. That kind of confusion is understandable because there are other vaccines made with live viruses, said Brittany Kmush, an epidemiologist who teaches public health at Syracuse University.
But the coronavirus vaccines were not. For immunocompromised patients, Kmush said, the concern is generally that their systems would underreact — not overreact — to the shots. In that case, she said, “they may not be as protected as someone with a full-strength immune system.” She and other doctors said it’s especially critical that such patients get the shot.
Breen also expressed skepticism over the public campaign for vaccination, saying she questioned the reasoning “behind pushing it so hard.”
And she said that after a previous bout with covid, she believed she had natural immunity — even though the Centers for Disease Control and Prevention recommends the vaccine for those who have been previously infected.
“Do I want to have a kidney transplant? Well, yeah,” Breen said. “At the expense of possibly getting a vaccine that could throw my immune system into a fit? No. If that means I have to wait longer for a kidney to be confident what I’m doing is really what I’m okay with, I don’t want to make a hasty choice because I’m impatient.”
After her story made the local news, she learned of four transplant centers that do not require the shot. She has joined their wait lists, she said, “which just adds to my faith that whatever God is doing, it’s turning something bad into something good.”
Doctors said cases of vaccine refusal are exceedingly rare — most transplant candidates do not need to be convinced of the importance of protecting themselves against covid. Geisinger’s Casale said the majority have built enough trust with their transplant teams that they readily follow their medical advice. Of those who don’t, he said doubts alone are not surprising.
What is surprising, he said, is “that those doubts are so ingrained that they are unable to get beyond them even with the advice of a team to whom they are otherwise prepared to hand over so much of their life to.”
Kumar, of the American Society of Transplantation, said she speaks with patients who don’t want the shot to try to address their concerns. She said she finds resistance among transplant candidates hard to understand.
Between immunosuppressant medications, the possibility of organ rejection and the risk of infections, transplant patients have enough to worry about, she said.
“It’s a big surgery,” Kumar said. “There’s so many other aspects — there’s no need for covid to enter into that equation. So I guess what I think about it is, why would you want to worry about covid when you’ve got all these other things to take care of after transplant?”
In Ganim’s case, getting the vaccine wasn’t a question. He rolled up his sleeve months ago. His family did, too. Because of his illness, they continue taking precautions, wearing masks and being cautious around groups of people, said daughter Helania, 21, adding that “we can’t take any chances.”
Ganim was diagnosed with hereditary kidney disease in 1997 and has been a longtime patient of the Cleveland Clinic, where his father had a kidney transplant 20 years earlier and where he said he has received top-notch care.
Over the past few years, his condition has deteriorated, just as doctors said it would. His kidneys are covered in cysts, swelling his stomach and making movement painful. At times his kidney functionality has been as low as 15 percent.
Last year, when doctors said he needed a transplant and his immediate family was not a match, Debi Ganim turned to social media to plead for a donor. The Ganims were ecstatic when one came forward in late June — a longtime family friend, Sue George, who told them it was meant to be.
George, whose daughter had Debi Ganim as a teacher years ago, said in an interview that she was “so happy to be able to be the one to help him.” The Ganims, too, were relieved to have “our first sign of hope,” Debi Ganim said. “I cried my eyes out.”
They said George’s vaccination status was known to the clinic — she opposes the coronavirus shot on religious and medical grounds, she said — but the vaccine policy had not yet been instated, so surgery plans moved forward.
Then came the cancellation.
“There’s a mind-set that you get into when you’re going to donate one of your organs that is built up over several months and lots of testing,” George said. “You get to a point where it’s almost like — well, I just felt like this was his kidney and I was holding it for him.”
The Ganims hurried to find a new donor, with his daughter launching a social media campaign in search of a kidney and his family appearing on the local news. Scores of others signed up to be screened. As days passed, George said she considered getting the vaccine so she could go through with the donation.
In the end, she didn’t have to. Potential donors were fast-tracked, and early this month, Ganim discovered a potential new match in a former high school classmate.
“While my family and myself were disappointed in the decision on Oct. 8th,” Mike Ganim said in a statement, “my faith in my doctors and the transplant team never wavered.”
He and his family spent weeks waiting to hear of a new surgery date with the clinic, feeling optimistic. But cautiously so.
After everything they’d been through, Debi Ganim said last month she sometimes worried about the future and whether her husband would make it through another wait. But she didn’t want to dwell on that kind of thinking.
“I try not to,” she said. “And then I remind myself it’s going to happen, and he’s going to have his life back. And we’re going to be able to move on and put this all behind us.”
She added: “I hope.”
In mid-November, the family got the news they’d waited weeks to hear: Ganim got a new surgery date at the Cleveland Clinic. He’s scheduled to get a new kidney Monday.