First Kidney Transplant From Donor Living With HIV Challenges Longstanding Stigma
April 1, 2019
But the research team and the donor in this case see broader implications for the milestone surgery: They hope it will change perceptions about HIV and reduce stigma.
People living with HIV were previously able to receive a transplant from an HIV-negative donor, but a federal law passed in 1984 made it illegal for anyone with the virus -- living or dead -- to donate organs. Researchers and activists argued for years that the law was based on outdated medical information and that lives could be saved if the ban were lifted.
Much of the research into this issue was conducted by a team of doctors and researchers at Johns Hopkins, led by Dorry Segev, M.D., Ph.D., who performed this week's surgery. In a 2011 article, Segev and team estimated that allowing HIV-positive people to donate organs after death would provide a pool of 500 to 600 donors per year. The researchers argued that it was unethical to waste the opportunity for transplants between HIV-positive individuals and pointed out that allowing those transplants would help HIV-negative individuals in need move up the wait list faster as well.
This research helped spur the passage of the HIV Organ Policy Equity (HOPE) Act [s], which was signed into law by then-President Obama in 2013. The law opened the door for organ transplants from HIV-positive deceased donors. Segev's team performed the first such transplant in 2016. Over 116 have been done since. The team also conducted research on HIV-positive transplant patients and found they have better outcomes than peers treated with dialysis.
While the research on recipients was promising, the medical community remained concerned about allowing living, HIV-positive individuals to donate a kidney. Living with one kidney was seen as too dangerous for someone with HIV, because both the virus itself and the drugs taken to suppress it can increase the chance of kidney disease. A 2017 study from the same team eased these fears, finding that the risk of kidney disease in otherwise healthy, HIV-positive individuals was not that much greater than the risk in those who were HIV negative.
Last year, Segev's team announced that they were looking for a suitable HIV-positive kidney donor to try the first living donor transplant. Enter Nina Martinez, a 36-year-old public health consultant from Atlanta.
When she was just an infant, Martinez received a blood transfusion at a military hospital in San Francisco. It was 1983, and donated blood was not yet screened for HIV. Her family found out she had contracted HIV when she went for eye surgery at age eight. Martinez says that having been HIV positive for so long and so early in the epidemic, she experienced stigma many times. She told The Washington Post that she was watched in school to make sure she didn't infect anyone else and later learned that a principal had said, "Why are we educating her with public dollars if she's going to die?" She also told the story of a roommate who moved out so fast that he left all of his stuff behind.
Martinez, who is healthy and has an undetectable viral load, wanted to change the narrative about HIV. She became interested in organ donation when she saw an episode of Grey's Anatomy that included a fictionalized story of a transplant from a living donor. She also had a friend die while on the transplant waiting list. Martinez reached out to Johns Hopkins University and offered to become their first donor. In an interview before the operation, she said, "Society perceives me and people like me as people who bring death. And I can't figure out any better way to show that people like me can bring life."
Martinez was matched with a recipient who has chosen to remain anonymous. In addition to meeting the regular requirements for matching, Martinez and the recipient had to have compatible HIV drug resistance. The recipient will get a new strain of HIV from Martinez, and doctors have to ensure that the patient's antiviral drugs continue to work. Like other transplant patients, the recipient will also have to take anti-rejection medication, but doctors don't expect that to interfere with their HIV drug regimen.
As for the surgery itself, it was most remarkable for being unremarkable. Segev told CNN, "The beauty of it is that the operation itself was like the hundreds of other living donor operations that I've done; it was just a regular live donor operation." Like Martinez, however, he believes this surgery can be a turning point for public perceptions. He told The Washington Post, "People with HIV today can't donate blood. But now they're able to donate a kidney. They have a disease that 30 years ago was a death sentence. Today they're so healthy they can give someone else life."
Martinez, referring to the people who discriminated against her in the past, added, "It gives me great joy to know that I'm putting a story like this out there. Because those people need a mental reboot."
Martha Kempner is a freelance writer, consultant, and sexual health expert.
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This article was provided by TheBody.
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