For a moment, Paul Edmonds, 67, standing before a crowd marking the 35th annual World AIDS Day in Arcadia, could see the path that led to this: growing up struggling with his homosexuality before finding community in San Francisco and then finding out he had AIDS.
That he’s lived to see this day is a personal triumph and a call to action, said Edmonds, who is one of only five people worldwide to achieve full remission of HIV, the virus that causes AIDS.
“My story must serve as a catalyst to ensure every person living with HIV has access to the same hope, the same opportunities and the same chance for a cure,” he said.
The Desert Hot Springs resident spoke to a crowd gathered at the Los Angeles County Arboretum in Arcadia on Friday that included L.A. County Supervisor Kathryn Barger and experts on medical and community HIV resources.
Edmonds said he struggled with denial, guilt and depression growing up, but was blessed when his family continued to support him when he came out in the mid-1970s.
“I moved to San Francisco, and I was like a kid in a candy store,” he said. “I was validated. It was incredible.”
Then people started dying.
In 1980, Edmonds saw the rise of “gay cancer” among his friends, and all the unknowables about the disease was frightening and stigmatizing. His father’s death in 1988 spurred him to get tested. Edmonds said he would never forget the face of the nurse who had to tell him the news: not only was he HIV-positive, but he had full-blown AIDS. He was 32.
Edmonds was prescribed AZT, or azidothymidine, the first federally-approved AIDS drug.
“I felt sick all the time and I stayed feeling sick,” he said, crediting a lower dosage of the drug to saving his life.
By 1992, when AIDS was the number one cause of death for men ages 25 to 44, Edmonds was on different therapies to control the virus. He got married, imagining a future with his husband Arnie Stone, “and allowed ourselves to think about growing old.”
The couple had celebrated 26 years together when Edmonds was diagnosed with myelodysplastic syndrome, which later developed into acute myeloid leukemia (AML). Doctors said leukemia and other blood cancers often strike older HIV patients because of their long-lasting weakened immune systems.
The couple went to City of Hope, betting on the Duarte center’s success in providing stem cell and bone marrow transplants to people with cancer and HIV. Drs. Ahmed Aribi and Monzr M. Al Malki had a plan: find a stem cell match from a donor who also carried a rare genetic mutation that could cure Edmonds of HIV.
But first, Edmonds underwent three rounds of chemotherapy before his leukemia went into remission and he was cleared for a stem cell transplant.
The odds of finding a donor with the HIV-resistant mutation were daunting: only 1 to 2 percent of the world’s population carry the variation.
City of Hope doctors found two donors. On Feb. 6, 2019, Edmonds received the lifesaving stem cells, and “it was a breeze. I felt better right away.”
The next step was to wean him off HIV therapies, with regular tests to detect the virus and monitor symptoms. The pandemic made this difficult, and doctors had to wait for Edmonds to be fully vaccinated against COVID-19 before they could stop his therapies.
Edmonds took his last HIV medications on March 2, 2021. Four months later, after tests came back negative for HIV, Edmonds became one of five people in the world in remission for both diseases. He is also the oldest in the group and the person who had had HIV the longest.
Edmond’s case is the promise of a cure, said Cheryl Barrit, executive director for the Los Angeles County Commission on HIV. The group plans, allocates, coordinates and delivers HIV, AIDS and STD services countywide. Its 51 members are appointed by the Board of Supervisors.
World AIDS Day is a chance to “reflect on the progress we’ve collectively made with partners and to commit to the actions needed to end HIV/AIDS as a public health threat by 2030,” Barrit said. “We have the tools to end HIV; however, we continue to see disparities particularly in communities of color. It is important that people get tested and know their status.”
Erika Davies, the city of Pasadena’s representative to the Commission on HIV, said Edmonds inspires others to “persevere and keep trying, that science is on our side.”
Commission member Jonathan Weedman, chief external affairs officer for Via Care Community Health Center in Los Angeles, remembers the early days of the AIDS epidemic when there was no testing, little treatment and very little hope.
“It was an unimaginably challenging time, and it was terrifying,” he said. “Today, AIDS is a chronically-manageable disease.”
Supervisor Kathryn Barger reported that at the end of 2022, more than 50,000 people were diagnosed with HIV in Los Angeles County, with 1,400 new transmissions a year.
“Days like today are a reminder of the global struggle to end HIV, end stigma, honor those we’ve lost and amplify the rallying cry to work toward the day when HIV is no longer a public threat,” she said.
Arnie Stone said for his very private husband to share his story shows how committed he is to offer hope to those with HIV and remember all the people they’ve lost. Edmonds serves on the Community Advisory Board for RID-HIV Collaboratory, funded by the National Institutes of Health, working to fundraise for HIV cure research.
“The man inspires me, I have a wonderful life with him,” Stone said.
Edmonds said giving up was never an option.
“It’s just who I am,” he said. “Sometimes it’s hard to believe, but I do. I open my door and I look out on a long and happy path.”
