Zackariah Pate loved being an uncle.
Nieces Nataleigh Goodwin, 6, and Emileigh Griffith, 2, loved him back, especially when he took them outside to draw with sidewalk chalk or to search for worms.
“That’s me and Emileigh and Aunt Ashleigh and Uncle Zack,” Nataleigh said, showing off a picture she drew while Ashleigh Blankenship spoke about the historic donation of her brother’s heart. “I miss him very much.”
Pate, who died July 9, made just the third HIV-positive-to-HIV-positive heart donation in the U.S. this month at Sentara Norfolk General Hospital, Sentara spokesperson Dale Gauding said.
Blankenship knew her 29-year-old brother, who lived with her in Portsmouth for most of the past two years, was an organ donor, but she and Pate’s two other sisters, Taylor Goodwin and Madison Tye, were stunned to learn the donation was possible a decade after he was diagnosed with HIV.
“I know my brother would have wanted that,” she said. “I feel like the HOPE Act needs more recognition.”
The HIV Organ Policy Equity Act, passed in 2013, established a research program that made liver and kidney transplants legal for people with HIV. In May 2020, the act was expanded to include all organs, and the first HIV-positive heart transplant took place in 2022.
This was the first HIV-positive organ donation for Sentara Health, Gauding confirmed, and for Virginia Beach-based LifeNet Health, the federally designated organ management organization for most of Virginia, said Douglas Wilson, its executive vice president. Pate’s organs were transported to recipients out of state.
As of Dec. 31, 2023, 377 HIV-positive kidney donations and 93 HIV-positive liver donations had taken place, according to UNOS, the United Network for Organ Sharing, which manages the United States’ organ transplant system.
The HOPE Act allows for living organ donations, but so far, only three have taken place. The second was a kidney donation in 2019 by Karl Neumann, a transplant registered nurse at Sentara Norfolk.
“Working in the profession for 20-some years at that point, I always wanted to be a donor, but once I was HIV-positive it was illegal for me to do that until the HOPE Act passed,” Neumann said Friday.
There are a few reasons donations remain rare, Neumann said, including the limited number of centers that can transplant HIV-positive organs and the comparatively small group of eligible donors.
Recipients of HIV-positive organs can only get their transplants at the roughly 35 centers that participate in the HOPE Act research study, Neumann said, and other transplant centers may refuse to accommodate HIV-positive patients even if they are receiving HIV-negative organs. Generally, donations can happen from anywhere.
Neumann’s donation took place at Duke University Hospital in North Carolina because Norfolk General is not part of the study, but his team in Norfolk works with HIV-positive patients, including a few who have received HIV-negative kidney transplants.
More complicated infection protocols are part of why so few transplant centers work with HIV-positive patients, but Neumann said he feels the persistent stigma surrounding HIV also contributes to the limited numbers.
“People live very normal lives with HIV at this point, but there’s still a social stigma,” Neumann said. “My doctors hated it when I said that I would rather have HIV than diabetes — but I think it’s easier to manage.”
Improvements in medication have helped make living donation possible without risk to the donor, Neumann said. The health, future health and rights of the donor are the most important factors in the process.
In the past, HIV medication sometimes caused kidney or liver failure, he said, but now, organ damage in most patients is caused by other health problems.
“If HIV directly related to needing a kidney or liver or something in the future, they would never even have proposed living donation,” Neumann said. “I always tell potential living donors that you’re getting the best health screening that you’re ever going to get.”
One of the biggest reasons donations remain rare, though, is the lack of awareness that they’re possible.
“I give a lot of gratitude to any of these people who have donated their organs and signed up ahead and registered, but also to those donor families — his family who is sharing his story,” Neumann said, referring to Pate.
Blankenship said her brother, who died as the result of a suicide attempt after battling mental illness for most of his life, was obsessed with his health, following strict routines and rules for everything from his diet to skincare. Even through the tumultuous times since their mother’s death in 2021, he kept up with managing HIV.
“He always thought he was unhealthy,” she said. “And look what happened. He was able to save lives.”
Have a health care or science story, question or concern? Contact Katrina Dix, 757-222-5155, katrina.dix@virginiamedia.com
