"I don't want to be anyone's hero. I want to be someone's example, someone's reason to consider donating."
Nina Martinez made history in March as the first person with HIV to become a living kidney donor. She told AKF that the decision to donate her kidney was "a long time coming." While she has been called a hero in stories about the transplant, she feels "it's not heroic to help someone who needs help" — it is just the right thing to do.
Nina told her story prior to surgery in the January + February 2019 issue of Positively Aware and gave a post-transplant update in the May + June 2019 issue. Here's a shortened version of her article.
I was not enthusiastic in 2013 when the HIV Organ Policy Equity (HOPE) Act was passed, allowing people living with HIV to donate their organs to other people living with HIV. As a child, I had always been told how lucky I was to be alive — and that was before my HIV diagnosis at age eight. My childhood was full of uneasy and uncertain expectations for long-term survival. I had finally made my peace with HIV by the time the HOPE Act became law. But knowing I could make new decisions about what I wanted to happen with my organs when I died threw me back to the existential crisis of my youth.
Six months after the HOPE Act was enacted, a Grey's Anatomy episode dealt with an HIV-positive to HIV-positive kidney transplant. Finally, I saw something in the HOPE Act that gave me, well, hope.
People living with HIV have higher rates of kidney failure. This is partly due to the virus — there are several HIV-related kidney diseases — and partly the result of some medications. 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 waitlist candidates, and the length on the waitlist disproportionately affects many vulnerable populations. While HIV status does not give a transplant candidate priority status, the HOPE Act increases equity on the waitlist by providing a donor pool specifically for people living with HIV.
Knowing the importance of living donation, I was hooked on the idea that I could become a living kidney donor. I had conversations in late 2015 with several physicians about the feasibility of people living with HIV becoming living donors. These conversations largely went nowhere since it had taken two years following passage of the HOPE Act to develop the research guidance that would carefully oversee HIV-to-HIV transplantation. Meanwhile, I registered as an organ donor in January 2016.
Two months later, researchers at Johns Hopkins performed the first liver and kidney HIV-to-HIV transplants thanks to a deceased donor who saved two lives that day. The next milestone in HIV-to-HIV transplantation is to demonstrate the safety of living donation now that we know deceased donor HIV-positive kidneys are safe for people living with HIV. The risk of kidney failure because of HIV is a reasonable one for someone living with well-controlled HIV. HIV is similar in this regard to other risk factors considered acceptable for living donors, such as smoking..
Searching online to discover if there were any new protocols that would provide me the opportunity to become a living donor, I found that in January 2018, Johns Hopkins had become the first transplant center approved to evaluate potential living kidney donors with HIV. I decided to undergo donor screening without a doubt in my mind that I wanted to do this.
Postscript: Nina donated her kidney on March 25, 2019 at the Johns Hopkins Comprehensive Transplant Center, following years of work studying and evaluating HIV-positive organ transplant. The groundbreaking transplant will open the door for more people who are willing to donate a kidney to someone else, saving the lives of HIV-positive kidney recipients and shortening the time spent on the kidney waiting list for others in the process.
Positively Aware reports that Nina and the recipient of her kidney are both doing well after the surgery. Dr. Dorry Segev, professor of surgery at Johns Hopkins University School of Medicine, said, "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."