This doctor saves lives through organ transplants – and he's also a world-class dancer
Johns Hopkins surgeon Dorry Segev is revolutionizing the transplant process by allowing HIV patients to receive and donate organs. But that's just his day job.
Of the 36.9 million people living with HIV around the world, about 113,000 end up on the transplant waiting list.
For many years, that's where they stayed. Some died waiting for transplants; others were willing to donate organs but were told they couldn't because of their status. But thanks to Dr. Dorry Segev, the idea of an HIV patient receiving life-saving transplants has become a reality.
Segev, an Israeli-born surgeon living in Baltimore, has dedicated his life to making organ transplants possible for people with HIV. He's the co-founder of HOPE in Action, a nonprofit research group that explores the feasibility, safety and effectiveness of HIV-to-HIV transplantation. In 2013, he led the charge to get the federal HIV Organ Policy Equity Act (HOPE Act) passed into law. And in late March, for the first time, a person living with HIV has donated a kidney to a transplant recipient also living with HIV.
Segev called the milestone "huge" and said the surgery was a success. "A disease that was a death sentence in the 1980s has become one so well-controlled that those living with HIV can now save lives with kidney donation – that's incredible," he said.
People living with HIV haven't been able to donate kidneys until now, because there were worries that HIV was too much of a risk factor for kidney disease in the donor. However, Segev and colleagues' recent research on over 40,000 people living with HIV showed that the new antiretroviral drugs are safe for the kidney, and that those with well-controlled HIV have basically the same risks as those without HIV and are healthy enough to donate kidneys.
For Segev's HOPE in Action group, the first-ever living HIV kidney donor transplant is a major milestone. But for the humble surgeon, it's all in a day's work – and he doesn't have much time to lap up the praise. After all, he's a bit busy doing basically every hobby under the sun.
You see, Segev is a bit of a renaissance man. When he's not saving lives through transplantation, he's dabbling in classical music (he plays piano, oboe and violin), slalom water skiing, photography, lecturing, traveling (he's been to every continent except Antarctica) and running a swing-dancing community in his hometown.
“The world is so full of so many beautiful and interesting places that I could be happy exploring for the rest of my life. But it wouldn’t fulfill the drive that I have to do all the other things that I’m doing,” Segev told From The Grapevine.
Talk about a restless streak. Since the HOPE Act passed in 2013, Segev's been running training programs at Johns Hopkins University while actively recruiting HIV-positive donors. “We want to teach everyone across the country so we have as many hospitals as possible doing this," he said. "My goal is for this to have a national impact.”
It was around that time, in 2013, when Nina Martinez, a public health consultant in Atlanta, saw an episode of the medical drama "Grey's Anatomy" that centered on a kidney donor who had HIV. It got her thinking about being a donor herself.
"I was also inspired by a friend and neighbor who herself became a living kidney donor," said Martinez, now 35. "Participating in clinical research is, for me, extremely important. I bore witness to my friend providing a lifesaving transplant, and in watching her I knew that if there was a way for me to help someone else, I had to do it. Doing so under a research protocol was very comfortable for me."
Five years later, it was finally time to put inspiration into action. In July 2018, Martinez read on Facebook that a friend who also had HIV needed a kidney transplant. Familiar with the medical research process and public health policy, she contacted Segev.
In October, Martinez traveled to Baltimore to undergo an evaluation for potential kidney donation. The tests required multiple trips for analysis to be certain that she was healthy enough to donate, which is standard in evaluating potential living kidney donors.
"Some people believe that people living with HIV are 'sick,' or look unwell," Martinez said. "For me, I knew I was in good health. HIV was no longer a legal barrier to organ donation, and I never considered HIV to be a medical barrier either. As a policy advocate, I want people to change what they believe they know about HIV. I don't want to be anyone's hero. I want to be someone's example, someone's reason to consider donating."
Sadly, before she could be cleared for a transplant, Martinez's friend passed away. In her grief, she didn't lose inspiration, and decided to continue trying to donate to an anonymous recipient. She said it was a way to honor her friend.
"I could do this for someone else, not because I'm special but because I'm strong," Martinez said. "Other people living with HIV before me participated in clinical research so that I could not just survive but thrive. It was my turn to do this, for both my friend that I cared about and all people waiting on a transplant."
Shortly thereafter, the surgical team confirmed Martinez met the criteria for donation. Once cleared, she successfully donated a kidney to a recipient who wishes to remain anonymous. The donor and Martinez are both doing well.
"What's meaningful about the first living kidney donor ... is that this advances medicine while defeating stigma, too. It challenges providers and the public to see HIV differently," said Dr. Christine Durand, who co-founded HOPE in Action with Segev, and is an associate professor of medicine and oncology at Hopkins. "As patients waiting for a transplant see that we're working with as many donors as possible to save as many lives as possible, we're giving them hope. Every successful transplant shortens the waitlist for all patients, no matter their HIV status."
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