Paul Edmonds, 68, of Desert Hot Springs, California, is one of only five people who have been cured of HIV after stem cell transplants to treat blood cancer. The donors had a rare genetic mutation, known as CCR5-delta32, that prevents the virus from entering cells. This procedure is too risky for most people living with HIV who don’t have cancer and are doing well on antiretroviral treatment, but the handful of functional cures offer clues about more widely applicable approaches.

 

September 1988

I was diagnosed with HIV in San Francisco at age 33, before effective antiretroviral treatment. My CD4 T-cell count was below 100, meaning I had AIDS. It was very scary and stigmatizing. At the time, most people were living no longer than two years after diagnosis. There were many nights of marches and protests to get the government to do something. I tried almost every drug that came out, including AZT, but the side effects were awful. I felt sick most of the time. I began painting—it served as a form of escapism. I focused onsurvival and not giving up.

 

Mid-1990s

I started on combination antiretroviral therapy when it became available. There were side effects, but they were greatly improved from those of the early HIV meds. It was like a night-and-day difference. My HIV viral load stayed undetectable for many years.

 

May 2014

I married my husband, Arnie House, at San Francisco City Hall, after having been together since 1992. He is HIV positive, and we’ve taken care of each other over the years, accompanying each other to doctor appointments, collaborating on healthy diets and exercise regimens and discussing the pros and cons of different medications.

 

August 2018

I was diagnosed with myelodysplastic syndrome. My main symptom was fatigue. I think I was diagnosed early because I saw my HIV doctor every three months, and he saw my blood work plummet suddenly. I had planned to move to the Palm Springs area, and I was referred to City of Hope, where further testing showed that I had progressed to acute myeloid leukemia (AML). I felt like I had been here before with a near-fatal diagnosis. I lived day to day, not allowing myself to think about the worst-case scenario. 

 

November 2018

I had heard of Timothy Ray Brown, who also had AML and was the first person cured of HIV after a stem cell transplant from a donor with the CCR5-delta32 mutation. My doctors at City of Hope told me from the beginning that they would look for a donor with the rare mutation in the hopes of curing both leukemia and HIV. They searched the Be the Match donor registry and found someone within a month. But first, the cancer had to go into remission. That took three rounds of chemotherapy.

 

January 2019

My AML finally went into remission, but the original donor was no longer available. Fortunately, they found a second donor with the same mutation. I felt as if I had won the lottery. At the time, only one person had been cured of HIV with this kind of transplant, but I had a lot of trust in my doctors, and I didn’t have huge options—the leukemia had to be dealt with. While I was in the hospital getting the AML in remission, the news about a second person cured with a CCR5-delta32 transplant came out.

 

February 2019

I received the stem cell transplant. At age 63, I was the oldest person, and the longest-living with HIV, to receive this kind of transplant. I received reduced-intensity chemotherapy and no radiation because of my age. The transplant itself was a simple infusion. I had heard from many people how difficult chemotherapy was, but it wasn’t as bad as I thought it could be. Certainly not as bad as the years on early HIV meds.

 

March–April 2019

I started feeling good rather quickly, but I stayed at a hotel near the hospital because I lived too far away should something go wrong. Arnie and friends from across the country came to stay with me during these two months because I couldn’t be by myself. I have a great support system. I had only minor graft-versus-host disease [when donor cells attack the recipient’s body], with mouth sores and dry eyes. Overall, I’ve been very fortunate.

 

March 2021

My AML was still in remission, and my HIV remained suppressed. My doctors and I decided to stop my antiretroviral treatment. We were planning to do so one year after the transplant, but then the COVID-19 pandemic hit, and I wanted to wait until I got a COVID vaccine. In the beginning, City of Hope sent someone to my house to do lab testing every week, then every two weeks. Now I get my HIV viral load monitored every three months.

 

July 2022

Repeated testing showed that I had no detectable HIV in peripheral blood cells [a marker of residual persistent virus] or gut biopsies from colonoscopies. My case was presented at the International AIDS Conference in Montreal. I chose to remain anonymous at the time and was known as the City of Hope Patient.

 

April 2023

I appeared on Good Morning America and in The Washington Post, New York Post and ABC News. I had always planned to go public with my story if the stem cell transplant was successful. I grew up in a small town in Georgia and had a difficult time coming out as gay. If I remained anonymous, I felt it would be like going back into the closet. My story is too important to keep to myself. It offers hope to those affected by HIV and researchers searching for a cure worldwide.

 

September 2023

I’ve met Adam Castillejo and Marc Franke, two of the other people cured of cancer and HIV with the same kind of stem cell transplant. We have Zoom get-togethers, and we were all together in public for the first time at the Hawai’i to Zero Conference in Honolulu.

 

May 2024

My AML is considered cured because it has been over five years since the stem cell transplant. My HIV will be considered cured five years after stopping antiretroviral treatment, so I have two more years to go. When I was diagnosed with HIV in 1988, I thought it was a death sentence—I never thought I would live to see the day that I no longer have HIV.

 

I am going to be a strong advocate for HIV cure research. I’ve lived for half of my life with HIV, and I’m still very connected to the community and feel like I always will be. I want the researchers to study me and the others who were cured, like they did with Timothy Ray Brown, so we can find a cure that’s accessible to all. I also want to encourage people to sign up to be stem cell donors with Be the Match, especially people of color, because there are not enough donors.