What does it feel like to be told you’re a symbol of the world’s hope for stopping HIV? That your unusual case could be like the Berlin Patient—the only person ever cured of HIV—or the next best thing: remission? That in your case, super early HIV treatment has limited HIV’s ability to gain a foothold in your body. Your case is so unique and inconclusive that scientists urge you to let them probe your body to look for the virus. The answer comes seven months after you finally stop therapy, two years after starting it. You aren’t cured, but you were nearly cured and you’re now the newest poster child for HIV remission.
Call it Mr. Toad’s Wild Ride, or, better, Alice in Wonderland’s fall through the looking glass. For Clark Hawley, 55, the past three years have definitely been wild, but also positive—a renewed chance to make a difference in an epidemic that killed many of his gay male friends in the ’80s and ’90s. It’s been an equally long, strange trip for Luis Canales, 31, who felt a bit less special when he later learned about Hawley. The duo are among the earliest adult cases of treatment to date.
Both men describe the surreal experience of living in limbo for years—uncertain if they still harbored HIV or not. Hawley now knows; Canales hasn’t elected to go off meds to find out for sure. But they’ve both become ambassadors for HIV clinical research, putting their bodies on the line for answers.
“I would never have put as one of my goals in life to become the poster boy for HIV research,” says Hawley. “But nobody else could do this; Luis (Canales) came after me.” He adds, “It was my responsibility.”
The two men were highlighted guests at last year’s amfAR HIV Cure Summit, where they met each other for the first time. Both are active participants in SCOPE studies.
Hawley looks like a typical middle-aged denizen of the Castro, his style a bit preppy. At the summit, he wore a loose dark jacket over a checked flannel shirt pinned with a large red ribbon. He’s a sweet man, friendly and chatty. He’s also a former married, ex-straight dad of two sons, aged 20 and 22, who came out later in life, then fell into a spiral of meth addiction. He had so many partners for so long that he doesn’t understand how HIV had spared him. He got tested for HIV every six months but went off the rails with meth. In recovery, he enrolled in a PrEP demonstration project in San Francisco, ready to commit to a single pill a day to ward off HIV.
‘I worry that no one is talking about AIDS anymore.’
He’s gotten used to the media spotlight. He’s also grateful for the opportunity to contribute. “I worry that no one is talking about AIDS anymore,” he says, “but the epidemic is still here.” Being back at Ward 86, the early epicenter, grounds him in his own history; here, everyone is still in the fight; he’s not an artifact of a fading gay epidemic.
“How could I not want to help find a cure?” asks Hawley rhetorically. “I’m obviously lucky; my case is rare. I feel a sense of duty to my community to participate.” If anything, he’s come to believe he’s here for a reason. “I mean, I was so promiscuous,” he says, shaking his head. “Why didn’t I get HIV back then? Well, now I have an answer.”
The minute he walks into Ward 86, he feels welcomed, needed, appreciated, he says. “Being here, you learn a lot about what’s being done. I’ve gotten really educated; honestly, it’s very inspiring.”
At the same time, it’s not always easy to be a rare specimen. Hawley became infected with HIV during a short time period between screening for the PrEP project and being prescribed his first dose of Truvada. HIV infection was diagnosed via a viral load test; he was caught so soon after acquisition that his HIV antibody test results were negative. Truvada was quickly switched to a four-drug HIV treatment combination, an estimated 17 days after infection had occurred. Deeks hoped that treatment had been started early enough to prevent HIV from seeding an infection. “We got close; we may have been off by a day or two,” says Deeks of the case. “He’s as close to a cure as you can get.”
Hawley’s case is more than that: it’s hard proof that, even with immediate treatment, we can’t stop HIV but we can radically alter its course. How radically? What might be possible now that we add novel drugs to flush out the HIV reservoir and boost immune responses? The new trial aims to find out.
At 31, Canales represents a stark contrast to Hawley, Mr. Gay Everyman. A performer and dancer, Canales is used to making an entrance—and a statement. He captured the stage at the amfAR summit in a bold red-, yellow-, and peach-colored dress paired with his knee-high red leather lace-up boots—a modern drag Dr. Frank N. Furter from The Rocky Horror Picture Show. He completed his dramatic outfit with a white surgical mask that bore a drawing of a big toothy mouth lined with red lipstick.
“I didn’t want to look too normal,” Canales says, half-jokingly. He’s an artist, and he says, a freak. That’s a positive label; he cultivates an art and gender outlaw persona—a rad drag HIV activist.
Canales is a member of the post-protease generation, a cisgender gay man who’s known a very different world: PrEP, U=U; a new era in which HIV is touted as a manageable disease. Although he knew about HIV, it’s all been a steep scientific learning curve. He also entered the PrEP demonstration project and, like Hawley, was found to have acquired HIV in the time between undergoing screening tests and starting Truvada. Canales was switched to ART on day 12 of Truvada dosing (an estimated 24 days post-infection), after the virus was detected via PCR, while his antibody test results remained negative. He was in the first stages of seroconversion.
“At first I thought it was cool; the way they presented everything,” Canales says about being told his was a unique case. “But for a while I was just being dissected, injected, my body parts looked at…so it was a lot of physical pain and emotional pain and not being able to fucking get any straight answers for about two years.”
For a long time, he also thought his was the only case of its kind because SCOPE confidentiality rules limit disclosure about participants. His first two years of HIV limbo were marked by anxiety, stress, and fear. “I mostly felt lost,” he says. He credits the SCOPE team, and especially Becky Hoh, for a lot of hand-holding. “They were very supportive. Becky is my girl,” he declares.
But the reception outside SCOPE was less kind. “Before the scientists thought they really knew what was going on, and that I might be cured, I would try to tell people about it,” Canales explains. “They either believed me or thought I was lying.” That got worse after the Bay Area Reporter wrote up his case. “People thought I was just trying to capitalize on some made-up thing,” he says. “It was like, ‘Oh, this crazy, wacky off-the-wall, avant-garde performance artist in fucking drag clothes is making up this fantastic story, and he’s trying to pull a fast one on us.’ I was publicly called a liar.” That changed when PBS ran a segment about his story. Now, he couldn’t care less about the skeptics.
His entry into research has also helped counter a deep regret at contracting HIV. “I knew about HIV, but I let my guard down,” he says, still angry with himself. “I was engaging in risky sex; I obviously wasn’t making good choices healthwise. So when they told me my situation had the potential to find answers and stuff—honestly that’s really great.”
‘I do it because it’s the right thing to do.’
Did he feel he had a choice to participate? “I do it because it’s the right thing to do,” he adds, echoing Hawley’s sense of ethical obligation. Then he jokes: “Honestly it felt kinda like Star Wars”—a reference to Luke Skywalker and the battle to save humanity.
Still, the experience hasn’t been a picnic. In a two-week period he endured five major procedures, including a lymph node biopsy. He described the operation as “searing pressure” on his skin. Yes, he’s a drama queen, but it’s been tough. He doesn’t look forward to the leukopheresis blood hookups either. “So fun,” he jokes, meaning—Not.
Yet he’s emerged with a deepening sense of mission, too. A newly-minted AIDS activist, he joined his first CAB a year ago and is learning fast. “I want to be a part of that ’cuz I have this perspective that no one else has, but at same time, I’m trying to find my footing,” he says, “and how I can play an important role in that.” He even sought out Timothy Ray Brown to learn more from the Berlin Patient’s journey. “His celebrity dwarfs me,” laughed Canales.
Looking ahead, Canales says, “I want to do a good job, so how do I get there? That’s been my process.” That’s also what prompted him, at the eleventh hour, to ask his drag artist friend, Hollow Eve, to cook up a spectacular outfit for his public coming out at the amfAR summit. If he’s going to represent, then he plans to represent. His battle cry: “Go Bold.”