On Monday, Nina Martinez, a 36-year-old public health expert, became the first living person with HIV in the United States to donate a healthy kidney to another person with HIV. The transplant, according to surgeons who performed the surgeries, was a success.
"HIV is no longer a contraindication for transplant in any way," said Dorry Segev, MD, PhD, of Johns Hopkins University, Baltimore, Maryland, who was the lead surgeon on the procedure this week.
"For us, this is not just a celebration of transplantation but a celebration of the progress in HIV care, and the fact that 30 years ago this disease was a death sentence and now someone with HIV can save someone else's life," he said during a news conference today.
The recipient, who has asked to remain anonymous, is doing well and is expected to be discharged in a few days, added Christine Durand, MD, also of Johns Hopkins University.
Martinez has already been discharged and is also doing well.
This transplant will allow researchers to study Martinez and those who come after to see if someone with HIV can have lifelong function with one kidney.
And members of the HIV community say it shows that this is yet another thing people with HIV can do.
"We can have HIV-negative babies. We can have great sex with our partners. And now we can donate kidneys and survive," said Barb Cardell, who has lived with HIV for years and works with other women with HIV as part of the Positive Women's Network – USA.
For a long time, HIV was considered a contraindication for organ transplantation — for the donor and recipient — said Deirdre Sawinski, MD, from the University of Pennsylvania in Philadelphia.
One of the concerns, she said, is that "immunosuppression could accelerate progression to AIDS and there would be an unacceptably high rate of infectious complications."
This was disproven in 2010, when researchers showed that people with HIV had high survival rates after transplantation (N Engl J Med. 2010;363:2004-2014). Then, in 2013, the HOPE Act cleared the way for Monday's transplant to take place. The act made it legal for research teams to transplant organs between donors and recipients — both with HIV — if transplant teams had an approved protocol. It is still illegal, however, for people with HIV to donate organs to people without the virus and in some states it is a felony for people with HIV to donate an organ to anyone.
Then in 2018, the National Institute of Allergy and Infectious Diseases launched the HOPE in Action multicenter kidney study (NCT03500315), which allowed researchers at 23 sites to collaborate to answer some outstanding questions: Would the kidney recipient develop a second strain of HIV from the donor? Would transplants be successful when both donor and recipient are HIV-positive? And how would the HIV-positive donor do with only one kidney over the long term? After all, HIV itself acts on the kidneys, and many antiretroviral medications, especially earlier generations, affect the kidneys.
HOPE in Action
Until this week, all kidneys donated to HIV-positive recipients — about 100 since 2016, according to the United Network for Organ Sharing — have come from deceased donors with HIV.
At the American Transplant Congress last year, a team reported that there were twice as many rejections in the 12 HIV-positive to HIV-positive transplants as in the 36 HIV-negative to HIV-positive transplants they examined.
There is still "concern in the kidney community about people living with HIV serving as living donors, since we know that HIV infection is a risk for kidney disease," Sawinski said. For the same reason, people with diabetes are generally not permitted to donate kidneys, she pointed out.
But Segev said that Martinez, a marathon runner whose HIV viral load has been undetectable since 2011, ended up being an ideal candidate.
"Just to be clear," he said, "Nina's kidney, which is from someone with HIV, is a healthy kidney."
Today, more than half the people living with HIV are at least 50 years of age, which means that treatment works and is keeping people alive. However, it also means they are experiencing the diseases of aging that affect older Americans.
And there is a need for kidneys in the HIV population. People with HIV are significantly more likely than their HIV-negative counterparts to develop end-stage renal disease, and this disparity is even greater in black than in white Americans (Clin Infect Dis. 2015;60:941-949).
Increasing Needs, Disparities
And rates of kidney transplantation in the HIV population have not kept pace with rates in the general population. A study by Sawinski and her colleagues showed that people with HIV spend more time on dialysis than people without HIV and are less likely to remain on the waiting list (Clin J Am Soc Nephrol. 2017;12:467-475).
In another study, they looked at how often those people were offered a kidney and how often transplant centers turned down a donor kidney for people with and without HIV. What they found was that people living with HIV were less likely to be offered kidneys than their HIV-negative peers (Clin Transplant. 2019;33:e13466).
When the researchers checked to see if the same was true for people with hepatitis C on the waiting list, they didn't see the same trend.
"The question then was 'Why?'" said Sawinski. But the data on why centers turned down organs was incomplete.
"People with HIV are less likely to be listed, less likely to receive kidneys from living donors, and less likely to get a transplant overall," she said. "But when they get transplants, they do just as well as everyone else, and they do better than patients with hep C. So there's no reason they shouldn't have equivalent access to transplants."
None of this was on Martinez's mind when she told her doctor in 2015 that she wanted to donate a kidney; that she wanted to be a member of the "one-beaner" club (bean, referring to the shape of a kidney).
It was not a hard decision or a particularly emotional one, she told Medscape Medical News.
"A Problem I Could Solve"
As a mathematician, someone trained in epidemiology, and a former public health analyst for the Centers for Disease Control and Prevention, Martinez tends to make her decisions by thoughtful calculus without much hand-wringing, she explained. And she is not afraid of making herself an example on a larger stage, as evidenced by her appearance at the Georgia statehouse to advocate for the modernization of HIV criminalization laws.
To her, the intractable problems with HIV — stigma, discrimination, lack of access to healthcare, and policies that disproportionately affect people of color, queer people, and women at risk for and living with HIV — are the work of a lifetime.
"This was a simple problem I could solve," she said. "Someone needs an organ. I have a spare one. It's legal now."
The path that led Martinez to Johns Hopkins this week wasn't just her pragmatism. Like a lot of organ donors, Martinez wanted to give her kidney to someone she knew.
She met John Tenorio, a longtime HIV activist in Colorado, when they worked together on a project years ago. Then, last summer, Tenorio was diagnosed with end-stage kidney disease, the result of a lifetime with type 1 diabetes.
Martinez contacted the hospital and said that she'd like to be considered as Tenorio's donor. "I had no idea of the 9 months that lay ahead of me," she told Medscape Medical News.
The 9 months consisted of blood tests, urine tests, X-rays, and ECGs, all to assess whether she might need her second kidney down the road. And she had to undergo an 18-gauge needle biopsy of her kidney, which HIV-negative donors do not.
"That biopsy was the easiest part of the whole process," she joked.
The kidney stone profile was done not once, but twice. The evaluation process did find one kidney stone, but it was nonobstructive and her profile showed that she was not prone to them.
Somewhere in the middle of all this, Martinez got the bad news: Tenorio had died. "It was super hard," she said.
Tenorio's death threw her for a loop, but by this time, she had already cleared several of the hurdles, and she still wanted to donate.
Every time Martinez posted on social media about the sadness that followed Tenorio's death or the frustrations and delays in getting approved to donate to someone else with HIV, she hashtagged it with #ForJohn.
Through the process, Martinez learned that she is healthy enough to be a donor, which felt significant, she said.
"People have this long-held belief that if you have HIV, you look sick," she said. But "you have to be extraordinarily healthy to be a living donor. Part of me wanted to blow people's minds."
Fast forward to the afternoon of March 25. After the 2.5-hour surgery, Martinez posted on Facebook: "Who's a living kidney donor now? Mission accomplished."
It was a moment that stopped Cardell — another Colorado HIV activist, who was close friends with Tenorio — in her tracks.
"I had to stop for a minute," she said. "I was thinking of the number of people living with HIV on that transplant list who now have greater hope that they might be matched to a living donor."
"Nina doesn't like it when I call her a hero," said Cardell. But "she's remarkable."
Researchers will follow Martinez for the next 4 years as part of the HOPE in Action study. And the recipient, who has decided to remain anonymous, will be tracked to see if the organ is accepted by the new body and whether Martinez's strain of HIV develops.
Martinez said she hopes this will mark a shift in organ transplantation for people with HIV.
The hope is that this "notable accomplishment" will raise "awareness about kidney disease risk among people living with HIV and their suitability as transplant recipients, while also focusing on disease prevention so that HIV-positive individuals don't end up on dialysis in the first place," said Sawinski.
And Martinez is looking for that first person to follow her lead.
"What I want more than anything is that first follower," she said. "Someone inspired me to donate, so I want to get the first follower and I want us to have the solution to the organ shortage."
The HOPE in Action study is funded by the National Institute of Allergy and Infectious Diseases. Segev, Durand, and Sawinski have disclosed no relevant financial interests.
Medscape Medical News © 2019 WebMD, LLC
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Cite this: First Kidney Donor With HIV Leads Way for More Transplants - Medscape - Mar 28, 2019.