Being HIV-positive didn’t stop Karl Neumann in giving a gift of life to another person, who also is HIV positive.
Neumann, 52, donated one of his kidneys as part of the HIV Organ Policy Equity (HOPE) Act clinical trial at Duke University Medical Center in Durham, North Carolina.
Neumann, a 52-year-old registered nurse, works as a transplant IT coordinator with the kidney, pancreas and heart transplant programs at Sentara Norfolk General Hospital. He has worked at Sentara for 12 years and has more 28 years in the medical field, officials at Sentara said.
His background is in clinical nursing in the transplant area. Neumann graduated from nursing school in 1995.
“I thought of donation for a long time probably because I dealt with recipients for my entire nursing career,” Neumann said, adding in the back of his mind was what if one of his family members needs an organ one day.
Neumann said he wasn’t HIV-postive until 11 years ago. But when he became HIV-positive there were no options out there until the HOPE Act was created.
The HIV Organ Policy Equity (HOPE) Act of 2015 established a framework to study the long-term effects of kidney donations involving HIV-positive donors and recipients.
Neumann’s donation is the second living kidney donation in the world between a donor and recipient both with HIV. The other donation was performed at Johns Hopkins earlier this year. Johns Hopkins is another HOPE trial site, according to a news release from Sentara Norfolk General Hospital.
The recipient of Neumann’s kidney wishes to remain anonymous. But Neumann is telling his story to bring awareness to the HIV community about the potential to donate and receive kidneys as part of the HOPE trial, or outside of the trial as a recipient.
A misconception about HIV-positive people is that people think they are ill.
“There’s still that stigma there of you’re going to catch something from someone even though it’s very old information. We’re actually quite healthy,” Neumann said. “Most of us take one pill a day; it’s a combination of three medications or two medications but it’s a very stable disease process. The CDC says once you’re undetectable you’re untransmittable, so there’s that whole piece there you know of educating the public that this is a very stable chronic disease at this point.”
There have been more than 140 deceased donor transplants that have occurred since 2014, Neumann said, adding “going into this I wasn’t realizing there were no living donors at that time when I started the process.”
“People don’t realize that they can be donors if they are at a high risk of HIV, let alone being HIV-positive. So there’s a very large untapped market out there of people who are not registered due to these misconceptions,” Neumann said. “But we’re still looking at people who are going by information from the 80s that we are unclean and diseased people.”
He also addressed that gay men might not think they can donate due to the fact that they fall into one of the high risk categories because they are going by the blood restrictions.
Sentara Norfolk General Hospital has transplanted one kidney from a donor without HIV into a recipient with HIV outside the parameters of the HOPE trial, according to the news release from Sentara Norfolk General Hospital.
NOTES
HOPE Act data and approved centers
Waiting list
Based on OPTN data, as of Sept. 6, 2019, HIV-positive patients waiting for transplant who were willing to accept HIV-positive organs:
- Kidney 220
- Liver 16
HOPE Act transplants performed
Based on OPTN data through Sept. 6, 2019:
- Deceased kidney 109
- Living kidney 2
- Deceased liver 41
- Total 152
Transplant centers approved to do HOPE Act transplants
There are 33 kidney transplant centers approved to perform HOPE Act deceased donor kidney transplants; five of them are also approved for HOPE Act living donor kidney transplants. There are 20 liver centers approved to perform HOPE Act deceased donor liver transplants; four of them are also approved for HOPE Act living donor liver transplants.
