Al Morales lives in Chicago with his partner, Reed Benedict. They met in 2009, and neither could have anticipated that one of Benedict’s kidneys would give Morales a chance to survive end-stage kidney disease (ESKD). Diagnosed in 2017, Morales would become the second person in the United States to receive a life-saving kidney donation from someone living with HIV.
Life-saving organ transplants have become a standard of care, and people living with HIV (PLWH) are finally joining the party, at least in some cities.
How did we get here? Life-saving organ transplantation has, historically, not been available to anyone and everyone who needs it. Imagine a donor organ like a ticket to see Beyoncé in concert. There are only so many of these opportunities in a given span of time. In 1984, Congress passed the National Organ Transplant Act, which did two notable things.
First, it made it illegal to buy or sell organs in favor of a more equitable wait list-based approach. Next, it made it illegal to transplant organs from donors with HIV.
Even for people without HIV, there have never been enough donors to match the need. Many people (with and without HIV) died before a potentially life-saving organ became available. A disproportionate number of patients living with HIV were pushed down already long wait lists during the difficult years preceding antiretroviral therapies because they were deemed too ill to save. And so taken in context, both the medicine and politics of organ transplantation have improved immeasurably since 1984.
Thirty years in the making, the HIV Organ Policy Equity (HOPE) Act allows organ transplants from donors with HIV to recipients with HIV. Until 2013, donors identified as HIV-positive were prohibited. Advocates who pushed for the legislation campaigned on the fact that people living with HIV are more likely than people without HIV to develop end-stage kidney and liver disease.
HOPE Act-authorized research protocols mean people living with HIV and end-stage liver or kidney disease may not wait as long for a transplant if an organ from a donor with HIV is available. The protocols also mean that people with HIV may now sign up to become organ donors.
Since passage of the HOPE Act, the lives of hundreds of people have been saved. One of them, the first person to receive a kidney under the HOPE Act, has remained anonymous, but their living donor, Nina Martinez, has become a leading advocate. Her efforts to bring awareness to stakeholders in the HIV transplant field, from lawmakers and medical researchers to doctors and patients, have been painstaking. Martinez is quick to point out that “…the mortality rate among kidney transplant candidates living with HIV is nearly twice that reported for candidates not living with HIV. There are many ethical issues surrounding the ranking of wait list candidates, and the length of the wait list disproportionately affects many vulnerable populations. While HIV status does not give a transplant candidate priority status, the HOPE Act increases equity on the wait list by providing a donor pool specifically for people living with HIV.”
Shortly after Morales’ ESKD diagnosis, Benedict offered to undergo testing to determine whether he was a potential donor. The two were a match.
Nearly three years later in 2020, the procedure was a success. Both were up and walking around within a few hours of their surgery, with relatively few complications since. Morales is on immunosuppressant treatments to prevent rejection, and other than adjustments to his ART regimen, his experience isn’t much different from transplants in people without HIV.
Today, more than three years after the transplant, Morales and Benedict are healthy and living their best lives. Within a year of recovery, they were able to travel together to Europe and Disney World—they even recently adopted a new puppy, Grant.
Expert care
Valentina Stosor, MD, is the infectious disease doctor and principal investigator who worked with Morales and Benedict throughout their journey. She has overseen hundreds of organ transplants from HIV-positive donors, living and deceased, at Northwestern Memorial Hospital in Chicago.
Stosor played an integral role in the trials that supported the passage of HOPE and sees the work at Northwestern not only as medical care but as social progress.
“I’ve been at Northwestern ever since medical school,” she says. “I grew up in the infectious disease division, so I spent half my time as an HIV provider and the other half as a researcher. Before HOPE, we had opportunities to participate in trials because it wasn’t considered standard of care at all; there was a lot of stigma.
“Transplantation has become a standard part of care, and while we were conducting those trials, there was a surgeon in South Africa whose situation was different. She started performing transplants for people with HIV using kidneys from donors with HIV with generally good outcomes. This was early in 2000 and it inspired us to learn about that here. So a group of transplant advocates worked with people on Capitol Hill to pass this law that Obama signed in 2013 and that was enacted in 2015. We were conducting studies in both liver and kidney transplantation, engineering completion of both to look at outcomes for people with HIV utilizing deceased donors and living kidney donors with HIV. It’s been highly successful. We are showing that it’s reducing wait times for people accepting organs from donors with HIV.”
Morales and Benedict’s experience confirmed what Stosor already understood to be the new standard of care for PLWH.
“People decide to trust you when they come to you for these sorts of procedures,” she says. “It’s a big responsibility that I don’t take lightly. To see it work so well [for Morales] the first time, and to see patients come back after their transplant a couple weeks later, a month later—they visit the office and they’re doing really well. Their kidney function is normal, which is really gratifying.”
The road ahead
The couple were lucky in many ways. Living in Chicago meant they had easy access to Northwestern Memorial, one of only six locations nationwide that has implemented the medical science which makes the HOPE Act such a landmark example of political progress for PLWH. Of the other five locations, two are in New York City. Duke University in Durham, North Carolina; Tulane Medical Center, New Orleans; Johns Hopkins in Baltimore and the University of San Francisco Medical Center also offer liver transplants from living donors but have yet to perform live donor kidney transplantation.
Patients who do not live within commuting distance of one of these locations need to cover the cost of transportation each way for the multiple (as many as a dozen) visits. Prospective patients also need to have the time for that travel. Factor in the cost of food and lodging, and the accessibility to these life-saving procedures becomes a stretch for most people.
People decide to trust you when they come to you for these sorts of procedures,’ she says. ‘It’s a big responsibility that I don’t take lightly.
An untold number of HIV-positive patients with ESKD in the U.S. still face systemic barriers to life-saving transplant medicine. Studies published online by the National Institutes of Health in 2019 assert that PLWH have a slightly higher risk of developing chronic kidney disease than people who do not have HIV, but once chronic kidney disease has started, the likelihood of developing ESKD is 2- to 20-fold greater compared to people without HIV. Unsurprisingly, the most vulnerable communities are the ones who are least likely to enjoy the sort of privilege that makes access to HOPE transplants a viable option.
Morales stresses how important it is for anyone with ESKD to understand that transplantation is a safe and viable option. “Having gone through it, it just seems logical in every way. There’s nothing you’re really giving up, especially as far as quality of life by taking this [kidney transplantation] route,” he says.
Morales and Benedict both feel strongly that awareness of the HOPE Act must be expanded, and Morales has connected over social media with other PLWH facing ESKD over the last couple of years. After posting a video about his experience on TikTok, other people with ESKD and HIV found him.
“One guy’s like, Hey, I have chronic kidney disease. I’m looking for a kidney. I’m [HIV] positive, and then I reach out to them in a direct message. We’d just message back and forth. Eventually, we called each other so I could provide some form of hope, because he really needed hope more than anything,” he says.
Resources
To become an organ donor, or to get medically evaluated to see if you are eligible, check out these resources.
hopkinsmedicine.org/transplant/programs/kidney/living-donors
How to sign up as an organ donor from your iPhone’s Health app: bit.ly/49JGqzM
Donate Life America: registerme.org
Five Wishes / Voicing My Choices: fivewishes.org
Congressional letter urges HHS to update its HIV organ transplant donor policy
It’s been over a year since an advisory panel made its recommendation
By Rick Guasco
A letter signed by 25 members of Congress has been sent to Health and Human Services secretary Xavier Becerra, calling on him to update federal policy on organ transplants among people living with HIV.
The HIV Organ Policy Equity (HOPE) Act was signed into law in November 2013. “Within four years of enactment, and annually thereafter,” the letter said, “the Secretary of Health and Human Services is required by this law to ‘review the results of scientific research in conjunction with the Organ Procurement and Transplantation Network [OPTN]…’ to determine whether organ transplants between people living with HIV should remain restricted to clinical research.”
The letter also noted that, “People living with HIV in the South are nearly twice as likely to die while on the organ transplant wait list.”
In November 2022 the HHS Advisory Committee on Blood and Tissue Safety and Availability (ACBSTA) voted to expand access of organ transplants of kidneys and livers among people living with HIV, seven years after research guidelines had been published. Since 2015, a reported 431 HIV-to-HIV organ transplants have been performed. The ACBSTA’s recommendations to revise organ transplant policy for PLWH were sent to assistant health secretary Adm. Rachel L. Levine, MD, in January 2023 and have been waiting for Becerra’s approval since then.
“We encourage you to instruct the Organ Procurement and Transplantation Network to implement a new standard of clinical care to increase the number of kidneys and livers for transplantation, reduce the transplant wait time for people living with HIV, and thus reduce the transplant wait time for everyone else waiting on a life-preserving transplant,” the letter said. “With expanded donor eligibility, advances in HIV treatment and the transplantation science amassed through HOPE Act clinical research to date, we can and should eliminate barriers to HIV-to-HIV transplantation. This new standard of care will shorten transplant waiting lists, reduce wasted organs and eliminate the unacceptable and continued deaths of people who are diagnosed with HIV and end-stage organ disease.”
U.S. Representatives Nikema Williams (Georgia, Dist. 5) and Katie Porter (California, Dist. 47) led 22 other members of Congress, along with the congressional delegate from the District of Columbia—all Democrats—in sending the letter. Read the letter at bit.ly/HIV-organ-transplant-policy-letter.