Sentara nurse Karl Neumann, who has had HIV for over a decade, is just getting used to people knowing he has the virus that can cause AIDS.
Up until this summer, hardly anyone in his life knew, including his own parents.
“There was no reason for them to know. I felt healthy,” said Neumann, whose disease is so well-managed with medication, it is considered noninfectious to other people. “I was taking a pill a day. It’s better than diabetes.”
But two weeks prior to undergoing a surgery that was expected to make headlines around the world, it was time to tell them.
This August, Neumann gave one of his kidneys to another person with HIV. It was the second such HIV-positive kidney transplant in the United States, a donation that up until recently wasn’t legal. Doctors at Duke University Hospital in Durham, N.C., performed the operation, after Johns Hopkins Hospital in Baltimore conducted the first in March.
Hospital officials are vague about the exact date of Neumann’s surgery to protect the privacy of the kidney recipient, who requested anonymity. The patient was said to be doing fine.
Now Neumann, who rarely talked about his HIV status, is becoming something of an ad hoc spokesman, helping to educate colleagues and the public on a clinical trial for organ transplants between people with HIV.
His donation was made possible by the HIV Organ Policy Equity Act, which lifted the ban on HIV-positive organ donors, cutting the waiting time for HIV-positive recipients significantly. Prior to the 2013 law, recipients with HIV waited for HIV-negative kidneys along with everyone else.
As of earlier this month, there were 94,756 patients in the United States waiting for a kidney, about 2 percent of whom live in Virginia. Among those people nationwide, 218 registered as living with HIV and willing to accept a kidney from an HIV-positive donor, according to the United Network for Organ Sharing, a private nonprofit that manages the U.S. organ transplant system.
Neumann, 52, has wanted to donate a kidney for more than 20 years — as long as he’s been in the field of organ transplants. He’s seen patients who have received life-saving kidneys, gotten off dialysis and gone on to lead healthier lives. He’s also known those who died before their organ match was made.
Today, he’s a transplant IT coordinator at Sentara Norfolk General Hospital, working on the administrative side of the process.
The idea to donate a kidney was always in the back of his mind, Neumann said. When he was in his 30s, he thought he’d wait, in case a family member was ever in need.
Then, at age 40, he was diagnosed with HIV after a random blood test. Because he had not experienced any symptoms, he believes it was caught early.
“I’ve been out as a gay guy since the ’80s. I probably should have been dead back then, so it was kind of weird hearing it later in life,” he said. “But it’s not a death sentence anymore.”
Despite his being in good health, Neumann’s HIV status prevented him from donating for many years. Then in December, he read research that indicated 100 organs from HIV-positive people already had been transplanted in the United States.
A couple of months later, he made an appointment for his first evaluation. He chose Duke because it was one of the handful of hospitals participating in the clinical trial and for its high survival rate.
It was then he learned the previous transplants were only from deceased donors. Suddenly, he was looking at becoming a pioneer in the study.
“I was like, ‘Oh, OK, that’s a little different,'” he said.
By not having to use HIV-positive organs exclusively from dead donors, doctors will have more organs available. Some say this will benefit more than just recipients who have HIV because if those individuals can be matched with organs from HIV-positive donors, it will get more people off the waiting list overall.
Transplant experts say it may also eventually lead to HIV-positive organs being used in patients without the virus. Transplants are already occurring with donated organs from people who were infected with Hepatitis C. The recipients are given medication that can block the spread of that virus.
Years ago doctors feared the medicines that stop recipients from having organ rejection also would inhibit their immune systems’ ability to fight off HIV.
Dr. Cameron Wolfe, an infectious disease specialist at Duke who was involved in Neumann’s medical care, said the antiretroviral medications used to control the disease are so much better now, that’s less of a concern. Donors are evaluated to ensure they don’t have different strains of HIV that could pose compatibility problems for the recipients.
“I think if someone who is HIV-positive wants to be a donor, we should do all that we can do to make that happen,” Wolfe said.
So far under the HOPE Act, there have been 160 HIV-positive organs transplanted, according to UNOS: 116 kidneys from deceased donors, 42 livers from deceased donors and 2 living kidney donors.
Neumann sees his donation not only as a medical milestone but a way to combat the HIV stigma. Being eligible to donate an organ suggests a level of health that challenges perceptions of people with HIV as sick or a public health threat.
He believes that’s an important message at a time when men who have sex with other men are still banned from donating blood.
Neumann’s recovery was like most abdominal surgeries performed laparoscopically. It involved a couple of puncture holes and a small midline incision for pulling out the kidney.
As for long-term consequences, he had to give up his high-protein Keto diet for a more balanced menu.
The upshot is knowing his kidney got someone off dialysis.
“I’d like to think that they take care of it. That would be nice,” he said. “But I’m realistic. You know, I gave them a shot.”
