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1st Living HIV-Positive Organ Donor Wants To Lift 'The Shroud Of HIV Related Stigma'

Apr 6, 2019

Nina Martinez just became the world's first living HIV-positive organ donor.

In a medical breakthrough, surgeons at Johns Hopkins Hospital late last month successfully transplanted one of her kidneys to a recipient who is also HIV positive.

"I feel wonderful," Martinez, 35, said in an interview with NPR's Michel Martin, 11 days into her recovery. The patient who received her kidney has chosen to remain anonymous, but is doing well, Martinez is told.

"They're doing wonderfully and they got an organ they desperately needed to get and that's all I could ask for," Martinez said.

HIV advocates are celebrating the achievement as an important step towards lifting the stigma around a disease that affects some 1.1 million Americans. In 2017, an estimated 18 patients died each day while waiting for an organ transplant. Many of these deaths involved HIV positive patients who have traditionally had access to a much smaller pool of potential organ donors.

The decision to donate

Martinez contracted HIV through a blood transfusion when she was an infant in the early 1980s.

"I do think that my lack of discomfort in talking about HIV does make people more comfortable with the idea, and I do attribute that to being diagnosed at such a young age," she said. "I didn't know HIV was supposed to be something that I was ashamed of."

She said she first looked into becoming a donor last year, when Johns Hopkins became the first hospital in the United States to announce plans to perform organ transplants for HIV patients from donors who are HIV positive. Previously, doctors had only transplanted organs to HIV-positive recipients from deceased HIV donors.

"Like most living kidney donors, I did start this process for a friend that I knew who needed a kidney," said Martinez.

Then her friend died in November, when Martinez was in the middle of a rigorous evaluation process. "I knew that this was a lot of medical spending not to try and do something with," she said. So Johns Hopkins found another recipient.

Explaining why she felt compelled to share her story, Martinez pointed to when Johns Hopkins performed the first transplants from deceased HIV-positive donors to two anonymous patients in 2016.

"It was important to me to be able to put a name and a face to that story to show that the need for HIV-positive organs is real and actually benefits everybody," she said. "My taking somebody off the deceased donor waitlist who is HIV positive means that everyone moves up the waitlist whether they're HIV positive or not."

Currently, more than 113,000 people in the U.S. — including those living with HIV — are waiting to receive an organ transplant, according to the United Network for Organ Sharing (UNOS).

A years-long drive

Last month's surgery marked the culmination of a years-long drive to expand access to organ donors for patients with HIV.

In 2016, UNOS gave Johns Hopkins approval to carry out the first transplant from an HIV positive donor to an HIV positive patient, capping a two-year push by Martinez's surgeon, Dorry Segev, to legalize such procedures.

Before that, Segev, an associate professor of surgery at the Johns Hopkins University School of Medicine, helped draft the HIV Organ Policy Equity Act signed by President Obama in 2013. The measure reversed a 1988 law preventing doctors from procuring HIV-infected organs regardless of the recipient's HIV status.

Segev, speaking with NPR in 2016, said he was motivated to address the "antiquated law" when he saw that the need for organ transplants among HIV patients had swelled since the start of the AIDS crisis in the 1980s.

Segev said he grew frustrated as he watched potentially life-saving organs going to waste. In one 2011 study, he and his colleagues projected that an estimated 500 to 600 would-be organ donors with HIV die each year. Had they been allowed to donate while they were alive, they could have been saving more than 1,000 lives annually.

"We were throwing away organs that were infected with HIV that could be used to help people with HIV," Segev said.

Today, an HIV diagnosis is no longer the death sentence it once was. "People live their lives with it," said Segev. "They just need to take antiretroviral medication."

But patients who use those antiretroviral treatments — along with other drugs used to treat the disease — are also at higher risks of kidney and liver failure and often end up on the organ waiting list.

Keeping transplants safe

Given the risk of kidney disease that's associated with HIV, the medical community has until relatively recently considered it unsafe to leave a would-be donor with just one kidney.

But newer medications are thought to be both more effective and safer, and to guard against potential complications, Martinez was made to go through months of rigorous testing to ensure success for her and her recipient.

"They determined that my future risk of kidney disease was really, really, small," Martinez said.

Martinez hopes her visibility and openness about her disease encourages others to realize they can be a part of advanced new treatments that allow HIV-positive people to live a healthy life.

"I hope that people who are not living with HIV who wouldn't normally consider themselves to be potential living kidney donors would actually consider it in earnest, as well as people living with HIV who are on great treatment."

NPR's Emma Talkoff produced this story for broadcast.

Copyright 2019 NPR. To see more, visit https://www.npr.org.

MICHEL MARTIN, HOST:

We're going to hear now about a major medical milestone. For the first time, a person living with HIV has donated a kidney to someone who is also HIV-positive. The groundbreaking transplant was performed at the end of March at Johns Hopkins Medicine in Baltimore, Md. Public health consultant Nina Martinez is the woman who donated her kidney, and she's decided to share her story with the public. She's with us now from member station WABE in Atlanta.

Nina Martinez, thank you so much for joining us.

NINA MARTINEZ: Thank you so much for having me.

MARTIN: And how are you feeling?

MARTINEZ: I feel wonderful. It's only been a short time since the transplant, and I give all that credit to the wonderful team at Johns Hopkins for caring for me so well.

MARTIN: The person who received your kidney chose to remain anonymous, but it's my understanding - if I have this right - that this person is not related to you. So I'm guessing that people might wonder why you were really motivated to become a donor.

MARTINEZ: Sure. Well, like most living kidney donors, I did start this process for a friend that I knew who needed a kidney. And I knew that donating as an HIV-positive person was legal, but I didn't know where we were with the science just yet. Unfortunately, my friend passed away last November and while I was in the middle of my evaluation at Johns Hopkins. And I knew that this was a lot of medical spending not to try and do something with, so I went ahead and proceeded to try and donate to someone anyway and to maximize the best transplant outcome. I did decide to let Johns Hopkins pick somebody who was on their wait list waiting for a kidney.

MARTIN: But I just want to go a little deeper here because I understand that this is actually a very kind of profound decision on your part - not just to donate the kidney but to be very public about it - to basically say, this is something I want to do. This is something I want people to know. Why is it so important?

MARTINEZ: It was important to me to identify myself because this is 2019, and I didn't want to hide under the shroud of HIV-related stigma. Now, everyone has their right to privacy, especially if you're trying to get over a recent kidney crisis, so I definitely respect my recipient's right to anonymity. But for myself, it was important to me to be able to put a name and a face to that story to show that the need for HIV-positive organs is real and actually benefits everybody, whether HIV-positive or not, because my taking somebody off the deceased donor wait list who is HIV-positive means that everyone moves up the waitlist whether they're HIV-positive or not.

MARTIN: So, Nina, help me out on this. As I understand it, there used to be a ban on people with HIV donating their organs. Isn't that right?

MARTINEZ: That's correct. In 1988, there was a ban on using the organs from donors living with HIV, either as deceased donors or living ones. And that all changed in 2013 when Congress passed the HIV Organ Policy Equity Act, allowing the transplantation of organs from donors living with HIV.

MARTIN: You've lived with HIV your entire conscious life - I mean, as I understand it, that you contracted HIV through blood transfusion when you were an infant in the early 1980s. So do you sense a change in how HIV has been viewed by the broader public and not just by the medical community? I mean, do you remember - I mean, I don't know that most of us kind of as kids think about becoming an organ donor, right?

MARTINEZ: (Laughter).

MARTIN: But do you remember feeling that the world of possibility has changed for you?

MARTINEZ: I do think in some places in America things definitely have changed with the science. In places, for example, where I live in the Deep South, there are a lot of long-held stigmatizing beliefs that people still have. And one of the reasons I did decide to go public as a resident of Atlanta was to really push people's perceptions into the 21st century because I couldn't think of any better way to show people that, you know, this isn't the 1980s anymore. You can live a long and healthy life living with HIV. People like me don't bring death, we can actually bring life.

MARTIN: Isn't it the case that, in the past, it isn't just the stigma, but the doctors were concerned that HIV-positive donors were too fragile to leave with just one kidney, that doctors were also concerned about the health of the donor? Would that be accurate?

MARTINEZ: That's correct. So usually, in any living kidney donation, you're undergoing an evaluation to see, are you healthy enough to lose an organ that you don't need to lose? And is your future risk of kidney disease small enough that you won't be affected later in life? Now, with HIV in particular, it is the case that both the virus and some of the medications used to treat it - usually the older medications - do cause some kidney damage that would be concerning. But, you know, time has changed, and we have newer medications that are kidney sparing. And so long as somebody has an undetectable viral load, they're seen to be a candidate for living donation.

MARTIN: So part of what I hear you saying is it's not just that people's perceptions have changed but that the reality of it is you are, in fact, healthy enough to be a donor. Have have people's perceptions changed? I mean, has your day-to-day life become different as a result of - I don't know - is it time? Is it education? Is it people knowing more? Is it your own outspokenness and confidence?

MARTINEZ: I do think that my lack of discomfort in talking about HIV does make people more comfortable with the idea. And I do attribute that to being diagnosed at such a young age. It was 1991. I didn't know HIV was supposed to be something that I was ashamed of. So I think that that really helps. And as far as how has my life changed so far, in the last 11 days it's changed a lot. Now people know my name. But it remains to be seen. I hope that people who are not living with HIV who wouldn't normally consider themselves to be potential living kidney donors would actually consider it in earnest, as well as people living with HIV who are on a great treatment that keeps them healthy.

MARTIN: Do you happen to know how the recipient is doing? Did you get to meet him or her, and how is that person doing?

MARTINEZ: I do not know who the recipient is. They've elected to remain anonymous. And...

MARTIN: Even to you?

MARTINEZ: Yep. I completely respect it. I think that, in the future, if they change their mind about meeting me, that's perfectly fine. But this is a gift I gave freely. I do know that they're doing wonderfully. And they got an organ they desperately needed to get. And that's all I could ask for.

MARTIN: That was Nina Martinez last month. She became the world's first living HIV-positive organ donor. We reached her in Atlanta. Nina Martinez, thank you so much for talking to us.

MARTINEZ: Thank you all for listening. Transcript provided by NPR, Copyright NPR.