- WASHINGTON POST
After Decades under a Virus’s Shadow, He Now Lives Free of HIV
12:12 JST, April 4, 2023
DESERT HOT SPRINGS, Calif. ― In September 1988, an intern at San Francisco General Hospital told Paul Edmonds that he had HIV. Worse, the virus had already ravaged his immune system and progressed to full-blown AIDS. Edmonds was 33 that day. Having seen friends with HIV waste away in months, he assumed he would be dead within a year or two. Maybe sooner.
“I remember how I felt inside when I heard,” he said. “I felt my heart sink.”
Unlike most of his infected friends, Edmonds lived to see his 40th birthday, then his 50th, and his 60th. Then something extraordinary happened. In 2019, he became one of just five people in the world to receive a successful stem cell transplant from a donor with a rare genetic mutation that makes the body resistant to HIV.
In 2021, Edmonds stopped taking the medications he had depended on for half his life. Now 67 and living here in California, he is in long-term remission from HIV and leukemia.
Because of the risks involved in stem cell transplants, the treatment that effectively cured Edmonds is likely to remain extremely rare, reserved for patients with both HIV and cancer, said Ahmed Aribi, one of the doctors who treated him at the City of Hope cancer center in Duarte, Calif. As it stands, many HIV patients take antiretroviral drugs that have transformed the infection into a long-term, manageable condition.
But the knowledge scientists are gleaning from the handful of patients who have undergone stem cell transplants could unlock secrets about the virus that will lead to new treatments or vaccines.
“That’s a long way from where we started,” said Joseph Alvarnas, a professor of hematology at City of Hope.
Alvarnas began treating patients with HIV in 1985, as a medical student working at San Francisco General Hospital. Back then, patients newly diagnosed with AIDS-related lymphoma, a cancer of the immune system marked by weight loss, fever and drenching night sweats, had a median life span of just 30 days.
Today, Alvarnas said, there are thousands of Americans who, like Edmonds, have lived with HIV for many years, decades even. While the specifics of Edmonds’s story are unique, its broad strokes are emblematic of the long path America has followed in its fight against HIV, a journey from near despair to hope.
‘Where do we go from here?’
Census figures show that more than 170 million Americans are probably too young to remember the early days of the HIV/AIDS crisis, but it was a time with intriguing parallels to the covid era. A new disease was spreading rapidly, killing in alarming numbers. Doctors and scientists scrambled to learn where it came from and how it might be stopped or slowed. Fear and misinformation spread, stigmatizing the infected and spurring conspiracy theories.
It’s a time Edmonds and his husband, Arnie House, another longtime HIV survivor, remember all too well.
Raised Baptist, Edmonds grew up in the small town of Toccoa, Ga., about 100 miles northeast of Atlanta. At the age of 10, when he still had only a vague idea that he might be different from classmates, Edmonds said he learned a gay man had been beaten to death in Toccoa. Some residents said the man had deserved it.
Not until 1976, at age 21, would Edmonds tell family and friends what he’d struggled to tell himself: He was gay.
“I’ll always love you,” his father said. “Just be the best person you can be.” Shocked at first, Edmonds’s mother quickly adjusted and provided love and backing.
That year, Edmonds moved from Atlanta, where he had been working as a word processor typing documents, to San Francisco, and the change “was incredible,” he said. Gay men were flocking to San Francisco. Edmonds made friends easily. He celebrated. “I didn’t feel alone anymore.”
Then, in 1980, people he knew began to get sick and die. At first, no one knew why. People called it the “gay cancer,” a term he despised.
Edmonds would sit in his neighborhood bar, the Deluxe, reading the obituaries in the Bay Area Reporter, a San Francisco newspaper. Often, the first he knew that a friend had even been sick was when he read the obituary. He would sit there crying, sometimes alone, sometimes with others.
Edmonds visited friends in hospitals. He attended funerals and “life celebrations” for the dead.
He felt healthy when he finally went to get tested for HIV in 1988, though he suspected that, like most of his friends, he had the virus.
One of the first things Edmonds did after learning that he had AIDS was to call his mother with the news; he had no siblings. His mother wept and said she would pray for him.
After receiving the diagnosis, Edmonds said, “I let myself freak out. I probably drank too much, though I did get that under control at some point.” Marijuana took on a much longer-term role in his survival. The drug countered the nausea, giving him an appetite, which in turn allowed him to avoid severe weight loss.
He did not plan his funeral, except to specify what he did not want. He did not want a religious service because he felt abandoned by religion. Nor did he want an open-casket funeral because he had not liked the ones he’d attended while growing up. He asked to be cremated.
There were moments when Edmonds allowed himself to imagine death. “How could I not?” Yet he focused his mind on survival and did his best to banish despair. When he visited sick and dying friends, he never thought, “That’s going to be me.”
“I tend to not give up,” he said. “Ever.”
Edmonds tried dozens of medications, some of them experimental. The physical misery of AIDS ― the nausea, diarrhea and intense fatigue ― came not from the disease, but from side effects of the medications he took. He meditated and endured.
He felt sadness but also great anger that “we weren’t getting the help that we needed.” President Ronald Reagan’s first public mention of the word “AIDS” did not come until September 1985, according to numerous sources.
On the night of Feb. 23, 1992, Edmonds went to a bar, the Midnight Sun, in the Castro District of San Francisco. From across the bar, he and Arnie House, who had served in the Air Force, saw each other.
“He was very talkative, and I thought he was very attractive,” Edmonds said. “There was just a lot to like.”
“Ditto,” House said. “I was just in awe of him.”
When they spoke that first night, Edmonds explained that he had HIV.
“I accepted it as normal,” House said. “I was enamored of him. That made it a lot easier.”
Soon after that first meeting, Edmonds convinced House to get tested for HIV. The couple went to the test together. By this time, HIV treatments were improving, and so was the outlook for patients. The first of the effective protease inhibitor treatments was only a few years from receiving Food and Drug Administration approval.
When House learned that his test showed he had HIV, he took the news well. “I said immediately, ‘Where do we go from here?'”
“We take care of each other,” Edmonds replied.
That was indeed how their lives with HIV played out. When one was sick, it always seemed the other was well enough to care for him. House, who had worked for more than a decade as a nurse, proved comfortable in that role.
The two men drew up wills together. They accompanied each other to doctor visits. When they arrived home from medical appointments, they started researching what they’d learned from the doctors.
They collaborated on healthy diets, exercise regimens and the pros and cons of different medications.
Edmonds, who had painted before they met, returned to his art and taught House. They spent hours working over canvases. Edmonds, who had lived through dark times, adored the brightest colors ― sky blues, hot pinks and lime greens.
“Painting,” he said, “was my happy place.”
A lifesaving diagnosis
As years passed, the men discovered that for them, HIV was not a death sentence, but a fact of life. Edmonds’s 40th birthday celebration was bigger and better than his 35th. For his 50th, he threw a large party, hiring a jazz band and inviting 100 people. In 2014, Edmonds and House, then 58 and 57, respectively, were legally married.
But in August 2018, on one of his routine HIV checkups, Edmonds’s doctor analyzed his blood sample and discovered a problem. Although Edmonds felt no symptoms other than fatigue, he was diagnosed with a blood disorder called myelodysplastic syndrome. The disorder results in some newly formed red blood cells failing to grow correctly or to enter the bloodstream.
Edmonds was referred to City of Hope in Duarte, where doctors learned that the syndrome had progressed to acute myeloid leukemia, a cancer of the blood and bone marrow. To treat the cancer, he required a blood stem cell transplant, a procedure that carries a 10 to 20 percent risk of death.
However, Edmonds’s leukemia had one benefit. He learned that when doctors searched for a compatible donor, they would have the chance to address both his leukemia and his HIV. They would hunt for a rare mutation, known as CCR5 Delta 32, which occurs in only 1 to 2 percent of the population. The mutation prevents HIV from invading cells and multiplying.
The transplant would have been too dangerous had Edmonds had HIV alone. But it was recommended for leukemia, giving Edmonds and his doctors a rare opportunity. The procedure had been tried before with other HIV patients; it had worked just four times, starting in 2007 with Timothy Ray Brown, a man known at first as “the Berlin patient.”
Doctors were able to find a donor who had the rare mutation and was a perfect match for Edmonds. The transplant was scheduled for Feb. 6, 2019. After six days of chemotherapy to wipe out his immune system so that it could not attack the donor cells, Edmonds was ready.
“Okay, the date’s finally here,” he remembers thinking.
The transplant, which took 20 to 30 minutes, went well. “He did better than average,” said Aribi, one of his doctors at City of Hope.
Edmonds passed the critical 100-day mark after the transplant, the time when complications are most likely to develop. For an additional couple of months, he was required to stay within close range of the hospital. At that point, old friends from Boston, Atlanta, Austin and Reno, Nev., came to stay with him.
“No one wanted me to be by myself,” he said. The friends treated the time as a reunion, accompanying Edmonds to some of his old haunts, including his former loft in the Flower District of Los Angeles.
Edmonds delayed stopping his HIV medications during the first year of the coronavirus pandemic, finally making the break on March 6, 2021.
The future of the HIV fight
The stem cell treatment, while unavailable to most patients, exposes a chink in HIV’s armor, one scientists may be able to exploit years down the road should gene editing be proved safe in humans.
As one of a handful of HIV survivors who have gone into long-term remission, Edmonds is of keen interest to researchers.
Jana K. Dickter, an associate clinical professor with City of Hope’s division of infectious diseases, said she is tracking Edmonds for two studies. One focuses on searching for reservoirs, small sites in the body where HIV can hide from the immune system, dormant but not producing new virus. The other study is trying to determine whether the virus can reactivate now that Edmonds has stopped taking HIV medications. So far, the studies have found no HIV reservoirs or signs that the virus is rebounding.
In the meantime, Edmonds has been visiting people who are sick and elderly, running errands and providing companionship. He has just begun sharing his own story.
“I’m a grateful person” he said. “Somehow, miraculously, I survived all of this.”
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