Paul Edmonds was diagnosed with AIDS in 1988. Today, he’s one of only five people who’ve been effectively ‘cured’ of HIV thanks to a breakthrough treatment.
Paul Edmonds says that if you were to step back in time to tell his 1988 self (newly diagnosed with not just HIV, but AIDS) that today he would be living with his HIV in remission, now no longer detectable at all, “I don’t know if I would have believed it. It was a different world back then.”
That world, of course, was the height of the HIV/AIDS crisis, where Edmonds, living in San Francisco, was faced with the constant barrage of heartbreaking news of friends and loved ones – the community around him – getting sick and passing away from the virus, which disproportionately affected members of the greater LGBTQIA+ community.
“Younger people today don’t realize what it was like there in the beginning, a difficult time for everyone,” Edmonds, 67, told Healthline in a recent interview. “It was very scary, no one knew what was going on. A very scary time.”
With that painful history in mind, it is no wonder why Edmonds’s personal story is remarkable.
After surviving the worst years of the HIV/AIDS epidemic and seeing innovations in antiretroviral therapies, Edmonds would also go on to become just one of five people living with HIV so far whose virus has gone into remission as a result of successful stem cell transplants for blood cancers.
Last year, it was announced that Edmonds, dubbed “the City of Hope patient” for the hospital where he received his successful treatment, was joining these rare ranks.
He received a transplant from a donor who possesses the very rare homozygous CCR5 delta 32 mutation, as part of his treatment for acute myelogenous leukemia (AML). This form of leukemia is found more often in people living with HIV later in life.
When looking back at his life and the fact that he is now officially living HIV and AML-free and no longer taking HIV medications, he said it’s important to step forward and share his story with the world.
“I want to inspire and give hope to the people who have HIV,” Edmonds said. “And, also, I want to remember the people that we’ve lost and I want to encourage [further] HIV cure research.”
Last summer, when it was announced that Edmonds was in remission for both his leukemia and HIV, he wanted to remain anonymous. It was a long winding road for him to get to this point, full of ups and downs and plenty of surprises.
One surprise was positive — how quickly he was able to find a match for the stem cell transplant.
Finding an adult donor who has the CCR5 delta 32 mutation is very rare. Just around 1% of white people have this mutation, which means they don’t possess the CCR5 receptor that enables HIV to invade and infect a cell. It is even rarer to find this mutation among people of color.
“I was shocked at how quickly they found a donor. It was almost exactly a month from the day I had my first appointment at City of Hope when I got a call telling me they found a donor with this mutation, it was quite a day,” Edmonds recalled.
“I’ve learned since opening up about my story and hearing what the doctors have to say that they actually found two donors, it took three months to get the AML into remission with three different kinds of chemo [chemotherapy]. They didn’t use radiation on me because of my age, so it took about three months, at the end of the three months the original donor wasn’t available, they had a second one, and I had no idea until recently that they had a second person — it’s just incredible. It’s hard to believe,” he added.
Edmonds is the oldest person to have experienced his HIV going into remission due to stem cell transplants.
Dr. Jana K. Dickter, City of Hope associate clinical professor in the Division of Infectious Diseases, was one of Edmonds’s doctors and was on hand at the 2022 International AIDS Conference to present the findings on his case to the public. She told Healthline that it’s now been over four years since his transplant and he’s been off antiretroviral therapy for over two years.
Edmonds is being monitored to see if his HIV returns, but as of now Dickter and her team “can still find no evidence of HIV replicating in his system.”
Recently, she conducted cellular testing to see if there was any evidence of HIV, and “so far, everything has been negative.”
“It’s been very exciting for him and a real journey in the sense that we are now four years out from the transplant and he’s doing so well,” she said.
When asked about the process of finding a donor who has this very rare genetic mutation, Dickter said it’s extremely difficult to find the right match. She said about 15 people living with HIV have received these transplants, but Edmonds, and the four others, are the only ones so far who have seen the virus successfully go into remission.
“So, there are [nearly] 40 million peoplewith HIV in the world, and now there are five ‘cures.’ So, each cure is significant, but you understand that not every time that this approach is tried, it works,” Dr. Steven Deeks, professor of medicine in residence at the University of California, San Francisco (UCSF) and a faculty member in the Division of HIV, Infectious Diseases and Global Medicine at Zuckerberg San Francisco General Hospital, told Healthline.
Deeks, who is unaffiliated with the City of Hope and Edmonds, said it’s necessary to contextualize stories like that of Edmonds. He cited one recent development where someone who looked poised to be the sixth individual to see their HIV go into remission, went off antiretroviral therapy, but then the virus ultimately rebounded.
This isn’t something that is foolproof.
“‘The City of Hope patient,’ ‘the New York patient,’ both are remarkable, ‘the New York patient’ is a woman, ‘the City of Hope’ [patient] is much older, this proves it can be done in a much more diverse population,” he added. “That is important for science to understand.”
Deeks explained that it ispossible for these individuals to see their HIV return. That being said, “every month that goes by that this doesn’t happen, the risk is lower.”
Dickter said that Edmonds, and the other living individuals who share this experience, have to be monitored very closely.
“I alluded to the roughly 15 who had transplants, there has been rebound virus in some of these situations, people who have reactivated HIV in their system. With [Paul Edmonds] we talked to him and he consented to do this [go off his antiretroviral therapies], and with very close monitoring, we’re doing blood tests on him every week immediately after stopping HIV medications,” she said. “There is something frightening about having this medication that kept you alive for all of these years and then all of a sudden you are going off it and it takes a little bit of a leap of faith to see if this works.”
Edmonds said HIV medications were part of his daily routine for 30 years. He said he doesn’t think he ever missed a dose during that time. Over the course of those years, he’s experienced advancements in the medications themselves. At one point, he recalls that he took 21 pills at one time.
“It wasn’t as big of a thing just taking away the pills themselves, but I saw improvements in my labs and even though the medications are much better, they do have side effects, they affect your kidneys, all of those things improved,” he said. “Now, I have almost perfect labs in all areas. I still take a lot of pills, I’m taking vitamins for many years, stuff for cholesterol and blood pressure, but I don’t have the nausea and stuff like I used to have with the HIV [medications], which is nice.”
In many ways, Edmonds is a living, breathing testament to how far we’ve come in the fight against HIV. But, it’s important to note that his story is very specific. This way of eradicating HIV isn’t replicable — it only makes sense as a byproduct of treating leukemia through the painful, often dangerous process of stem cell transplants.
While this isn’t something the average person living with HIV can opt for, what does it say about where we are moving in advancements in HIV treatments?
Deeks said there is a lesson to be gleaned from this transplant. He mused that what if there was a way to get rid of the CCR5 receptor? Then, “the virus has nowhere to go,” he said.
“So, how does one do that without a transplant? You look at what is happening in other areas of medicine, with sickle cell anemia, certain cancers where it seems possible that we will be able to edit people’s DNA directly, a shot in the arm, right? So, not tomorrow, not next year, but is it possible to give someone a shot in the arm and get rid of T-cells?” Deeks said, about potentials for the future.
He said these five cases are “proof of concept” right now. With gene editing — manipulating things at the genetic level to cure what was once thought of as incurable — could that be scaled to tackle HIV?
Dickter said our growing understanding of HIV has jumped by leaps and bounds from the height of the crisis in the 1980s and 1990s, but more needs to be done. More sophisticated medications, preventive measures like pre-exposure prophylaxis (PrEP), and stories like that of the “City of Hope patient” can give the world, well, more hope that we are further on that road to a cure for this virus and tackling a disease that remains widespread throughout the world.
“Paul is a real survivor, he lived through the 80s and when he touches on the story about his loved ones and seeing them get sick and die — really the stigma that he experienced — it’s such an amazing story,” she said. “In a way, it also gives me hope for what we see in the future in terms of hopefully we’ll see more of these patients who are able to say they were able to be free of HIV.”
Edmonds has a takeaway or two about his own story as well.
“I think the main thing is, don’t give up,” Edmonds said. “I’ve tried not to go to the worst case scenarios when I get bad news or something, I try not to think the absolute worst, I try to stay positive. There’s always hope.”