Where There’s Hope

I was not all that enthusiastic in the fall of 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 adolescence after my diagnosis 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, fans of the ABC-TV series Grey’s Anatomy heard Dr. Richard Webber announce, “Dr. Grey is about to do the first HIV-positive to [HIV-] positive kidney transplant in the state since the new law went into effect.” Keith, the transplant candidate in this episode, remarks, “You know, it’s ironic. I spent years fighting HIV. I get myself to the point where the virus is virtually nonexistent in my body. I survive. And now I die of kidney disease.” The season 10 episode (“I’m Winning”) follows Keith’s very-much alive friend Marty and Marty’s donation decision to help Keith; Keith, after all, had been present at the time of Marty’s HIV diagnosis. Finally, I saw something in the HOPE Act that gave me, well, hope.

There is a lot of truth to what Keith said. 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. Older antiretrovirals were more culpable, but newer medications can also cause kidney dysfunction. As people are living longer with HIV thanks to highly active antiretroviral therapy, they are also experiencing more kidney failure related to hypertension, diabetes, and cardiovascular disease—all of which can come with older age. About one year after that Grey’s episode aired, I learned that my former neighbor, Beth, who is not living with HIV, wanted to (and did) become a living donor. The problem at hand was stark: 20 people, on average, die each day waiting on a life-saving organ transplant.

A person’s wait can depend on location, their compatibility with an available organ, whether the organ is properly sized, and many other factors. Of particular note, 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 of 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 Atlanta 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 (also called “deceased organ donor”) in January 2016.

Two months later, researchers at Johns Hopkins performed the first liver and kidney HIV-to-HIV transplants. An HIV-positive donor, who made her end-of-life donation decision known to her family, saved two lives that day. As of October 2018, more than 80 organ transplants have been performed under HOPE protocols at 15 transplant centers. 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.

“Until recently, I thought organ donation was a crime because of my HIV-positive status,” says Carrie Foote, Associate Professor of Sociology and Director of Graduate Studies at Indiana University-Purdue University, and Chair of the HIV Modernization Movement-Indiana (HMM). “Learning it was not, I registered. While more organ donations are possible because of the HOPE Act, at least eight states have antiquated laws that prohibit people living with HIV from both deceased and living donation. Regardless, most people living with HIV are unaware they can be organ donors, especially that they can be living donors. It’s time to end such laws and remove related barriers to organ donation, so that people living with HIV can give the ‘gift of life.’”

A person’s risk of kidney failure varies based on age, sex, race, history of high blood pressure, diabetes, and heart disease. The risk of kidney failure attributable to HIV is a reasonable one for someone living with well-controlled HIV. HIV is thus similar in this regard to other risk factors considered acceptable for living donors, such as smoking.

All living donors, regardless of HIV status, will experience a decline in kidney reserve after donating, which increases the risk for developing kidney disease later. It is the transplant team’s job to very carefully evaluate a potential donor’s risk of kidney disease and advise a potential donor not to donate if they determine the future risk of kidney failure is too high. In the event that a living donor’s remaining kidney fails after donation, they are entitled to receive priority status when it comes to being listed for and receiving a transplant from a deceased donor.

I learned this past summer that a friend was undergoing tests to become a kidney transplant recipient. It had been nearly three years since the initial conversations with my physician about becoming a living donor. Searching online to discover if there were any new protocols that would provide me the opportunity, 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. If approved to do so, I will be donating a kidney to someone on the HOPE transplant waitlist if I cannot donate to my intended recipient.

“Becoming a living donor is the best decision I have ever made,” says Heather Winfree, who donated a kidney to her husband in September 2017. Although neither of them are living with HIV, she was thrilled that the donor list would be expanded. “When I heard that people living with HIV could be potential donors, to say it gave me hope—for those still waiting on their miracle—would be an understatement. By expanding the donor pool to include people living with HIV, wait times will decrease for everyone, which means more lives saved.”

So, what can you do if you are living with HIV and want to become an organ donor? Share your decision with others and let them know you want to save lives! You can document your decision by:

A health care directive or living will, such as Five Wishes or Voicing My Choices (for adolescents and young adults), can jumpstart conversations with others regarding your preferences and wishes for organ donation. For clinical research opportunities, you can search the clinicaltrials.gov website for studies by their registry number; this number is “NCT” followed by an eight-digit number, and ongoing studies are provided in the “Resources” section on this page.

To learn more, you can also send an e-mail message to hopeinaction@jhmi.edu.

“After being denied an organ transplant because I was HIV-positive, I now work to educate others,” says transplant recipient Gary Garcia of Dallas, Texas. “I believe everyone deserves care, compassion, and the best chance at life. I am living a full, healthy life after a liver transplant, and with my HIV still undetectable.”

Resources

Johns Hopkins Comprehensive Transplant Center
hopkinsmedicine.org/transplant/living_donors

How to sign up as an organ donor from your iPhone’s Health app
idownloadblog.com/2016/10/07/sign-up-organ-donor-health-app-iphone

Donate Life America
registerme.org

Five Wishes / Voicing My Choices
fivewishes.org

ClinicalTrials.gov
clinicaltrials.gov
Enter registry number: “NCT” followed by eight-digit number.

• HOPE in action: A clinical trial of HIV-to-HIV deceased donor kidney transplantation NCT03500315
• HOPE in action: A clinical trial of HIV-to-HIV liver transplantation NCT03734393
• Prospective clinical trial of HIV+ living donor kidney donation for HIV+ recipients NCT03408106​​​​​​