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Historic transplant opens doors to HIV-positive people with kidney disease.
WATCH A VIDEO: HIV positive kidney donor Nina Martinez shares her story
Nina Martinez has lived with HIV since receiving a blood transfusion when she was 6 weeks old. Now 35, she tries to fight misconceptions that still cause harm to people with the virus. Giving a kidney to someone who needed it was the most meaningful way she could imagine to advance the cause.
Early on March 25, Johns Hopkins surgeon Dorry Segev removed one of Martinez’s kidneys. Later that day, surgeon Niraj Desai transplanted it into a person also living with HIV. In most ways, the historic transplant was medically unexceptional. Its power came from its ability to help sweep away stigmas and barriers, paving the way for lifesaving kidney transplants from people with HIV to others with HIV.
“There’s the perception that people like me, we bring death,” says Martinez, who lives in Atlanta. “But in this moment, I get to bring life.” Her brave act was just the latest development in long-standing campaigns by both Martinez and Segev to improve the lives of people with HIV.
“This is a celebration of the evolution of HIV care,” says Segev. “Today it’s not even a disease. It’s a condition. And for people with HIV, one of the biggest stigmas has been that they have not been able to donate a kidney.”
That changed in November 2013 with the signing of the HIV Organ Policy Equity (HOPE) Act, a federal law that Segev championed. It reversed a 1988 law forbidding the transplant of organs from people with HIV. Martinez, 30 at the time, watched for developments in HOPE research.
In March 2016, she learned that Johns Hopkins had performed the nation’s first HIV-to-HIV kidney and liver transplants from a deceased donor. Because of health concerns for potential donors, it would take three more years and additional research before the first live HIV-positive kidney donation. “We don’t want an HIV-positive donor to donate a kidney and then lose the function of the remaining one,” explains Segev.
A Johns Hopkins research team, led by infectious disease specialist Christine Durand and Segev, determined that people with HIV have elevated kidney disease risk only when combined with other factors, including high blood pressure, diabetes or obesity. “The real advance was our ability to really understand what the risks are, rather than saying that everyone with HIV is at risk for kidney disease,” says Segev. “Someone who does not have those risk factors and has latent HIV is basically just as safe to donate as someone without HIV.”
Martinez was an ideal candidate. Her kidney function is excellent, her HIV levels have always been low, and she is healthy and strong. She’s planning to run the Marine Corps Marathon in October.
The national supply of kidneys for transplant is woefully inadequate for demand. Although roughly 100,000 people are on the kidney donation waiting list at any given time, only about 20,000 transplants are performed annually. Of those, about 5,000 are living kidney donations.
The availability of kidneys from people with HIV opens possibilities. Because only people with HIV can receive kidneys from people with the virus, such transplants mean that recipients can skip the long waiting list, allowing those without HIV to move up a slot.
“If enough people knew they could give or receive HIV-positive kidneys, there would never be anyone with HIV on a transplant waiting list,” says Segev. “We have the potential for that. It’s a matter of getting the word to them.”
Martinez is eager to be part of that process. “What better way to refute the stereotypes?” she asks. “I was supposed to be the sick one. Maybe people will reconsider what they thought was healthy.”