Karl Neumann, RN, had seen too many people suffer while waiting for a life-saving organ to become available. One day, he vowed, he would donate one of his kidneys, shortening someone’s time on the notoriously long organ transplant wait list.
There were many years ahead for that. Or so he thought.
When Neumann was diagnosed with HIV in 2009, he assumed that his shot at donating a kidney had forever vanished.
“It just never occurred to me that in my lifetime, that was going to ever be a possibility,” he says.
But what he thought was impossible just needed more time.
A decade after his HIV diagnosis, doctors rolled Neumann into a Duke University Hospital operating room to donate his left kidney to a stranger.
Now 57, Neumann remains healthy and active. He continues to take medicine that keeps the virus at undetectable levels.
A recent federal rule change will soon allow more people with HIV to donate a kidney, as Neumann did – or part of their liver – to someone else who has HIV. (Of course, organs donated by HIV-positive people aren’t considered for those without HIV.)
Expanding Donation
HIV-positive people have always been able to receive an organ from someone without the virus. But they couldn’t donate their organs until the law changed.
The HOPE (HIV Organ Policy Equity) Act – signed in 2013 and put into practice in late 2015 – opened that door. But it didn’t push it wide open. Only kidneys and livers were eligible at first, and only within a research setting.
Since then, surgeons have transplanted more than 500 HIV-positive kidneys and livers into people with HIV – including Neumann’s kidney. Researchers tracked patient safety and other outcomes. And the results have been encouraging.
So late last year, federal officials announced a final rule that will broaden the approved donations beyond research settings. The Organ Procurement and Transplantation Network (OPTN) is developing policies to put that rule into effect.
“I’m optimistic that it should have a huge impact.” says Christine Durand, MD, a transplant infectious diseases doctor at Johns Hopkins University School of Medicine in Baltimore.
The U.S. has roughly 250 transplant centers, she notes, but only 29 centers have joined in the ongoing research. Now, more centers can do these transplants, if donors step forward.
Helping Those Who Don't Have HIV
Paving the way for organ donations from HIV-positive people has already benefitted others without the virus, Neumann says. He’s the president of Donate Life Virginia, which manages that state’s organ donor registry.
The need runs deep. As of Feb. 7, 2025, there were 104,325 people in the U.S. waiting for a transplant. Most – more than 90,000 – need a kidney. Livers are the second most-needed organ, with 9,240 people on that list.
Exactly how many of those people have HIV isn’t clear. But by making HIV-positive kidneys or livers “that we used to throw away,” as Neumann puts it, available to people with HIV, that could also shorten wait times for people who don’t have HIV. “If one person above you gets a transplant, then in theory, you move up the list,” Neumann says.
Living Longer With HIV
HIV has become a long-term (chronic) disease, thanks to medications that manage the virus. So more people with HIV now live long enough to develop conditions such as type 2 diabetes and high blood pressure, which become more common later in life and make kidney failure more likely.
“Because we’ve done such a good job at improving survival in people with HIV, we are starting to see other complications,” says Emily Blumberg, MD, director of transplant infectious diseases at the Hospital of the University of Pennsylvania in Philadelphia.
HIV-positive people may not realize that they can become organ donors, says Durand, the Johns Hopkins doctor. But she sees signs that once they know it’s possible, they’re motivated to do so.
Durand was involved with one study, which surveyed patients at a Baltimore HIV clinic. Only 25% knew about the HOPE Act. But nearly 80% were interested in donating after death. It’s also possible to donate a kidney, or part of a liver, while you’re alive.
'No Negative Effects … Whatsoever'
Before Neumann’s transplant, he needed to change his HIV treatment. “That was probably my biggest trepidation.”
The medication had “worked extremely well for me,” he says, keeping the virus undetectable for a decade.
But one of the drugs that Neumann took, as part of a combination pill, could potentially harm his kidneys over the long haul. “You don’t want to put any extra strain on your kidneys if you’re going to be donating one,” he says.
Doctors checked Neumann’s blood for three months after they started him on a new combination pill that didn’t contain that drug. And his HIV remained undetectable.
Today, Neumann’s lone kidney is working fine. “I’ve really had no negative effects from this whatsoever.”
No Different for People With HIV
Three years after a kidney transplant, the survival rates and organ rejection rates are similar for organ recipients whether the donor had HIV or not, according to a study published in The New England Journal of Medicine in October 2024.
So far, nearly all kidney and liver donations from HIV-positive people have happened after the donor died. Neumann is one of only three such living donors. All three donated a kidney, two of them to a stranger.
The medical workup is rigorous for living organ donors, whether or not they have HIV. “There’s a lot of scrutiny,” Blumberg says. “Because you want to make sure that you’re leaving them whole – that the donation doesn’t impact on their future health.”
Offering that option outside of research centers may boost the number of living donors, Blumberg says. “That’s something we’ll see, to be determined.”
Meanwhile, researchers will follow longer-term results in both kidney and liver recipients moving forward, Durand says. She leads one federal study that will continue to track organ rejection and other results in HIV-positive kidney recipients.
But these transplants should not be viewed as “an experimental procedure,” Durand stresses.
“This is not something that is any different for people with HIV, compared to people without HIV,” she says. “Transplantation is safe, and people have excellent outcomes. I would like to see this normalized across [transplant] centers.”
Life-Giving Gift
Neumann has never met the man who now has his left kidney; the man preferred to remain anonymous.
But from his years working in the transplant field, Neumann has witnessed how a new kidney can reboot someone’s quality of life.
“They’re doing things that they want to be doing,” he says. “Spending time with their family and not miserable on dialysis.”
