Protected from HIV, ‘elite controllers’ still fight for a cure
Study tries to discover how certain immune systems are able to fend off the virus
SAN FRANCISCO— Lucky Choi has been thinking about making music again.
He has played piano, at times professionally, his whole life. But he stopped composing original pieces in the early 1990s. The last time he wrote something of his own, he was in Paris, just before his partner died of AIDS. He found, in the aftermath of that loss, that he had lost the desire to compose.
“The last piece I wrote was in his home. I stopped after that,” said Choi, who will turn 60 next month, from his home in San Francisco. “Music was always what gave me the most feeling of being alive.”
That he is still alive, still healthy, still able to make music if he is inspired, is in his view, “a miracle.”
Choi is HIV-positive, like his partner who died more than 20 years ago, and his current partner. He was infected, he thinks, in the late 1970s, when he was in his early 20s and new to San Francisco.
But there’s something different about Choi. Unlike his partners, he has never been sick from HIV and has never taken drugs to treat it. The virus is detectable in his blood only in the most sensitive of lab tests.
Choi is what’s known as an elite controller. His immune system, by some twist of genetics, is able to naturally fend off HIV, the virus that causes AIDS. Scientists believe about one in 100 people have this natural resistance — and some researchers think they may be a key to curing HIV.
But to live with HIV amid the plague of AIDS wasn’t easy, even for those who didn’t get sick. Many lived for years in constant fear that they, too, would die. For some, the realization that they were going to survive was isolating, or even guilt-inducing. And being essentially immune from HIV did not protect them from the tsunami of loss that rolled over their generation.
Like hundreds of other elite controllers in the U.S., Choi has participated for decades in medical studies that aim to understand how his immune system works, in hopes that the knowledge might lead to a cure for HIV. Every month he visits the University of California at San Francisco offices of Dr. Jay Levy to give blood, from which doctors obtain snapshots of the virus and his immune function.
Scientists are still trying to work out exactly how the immune system of an elite controller operates. Their understanding is that, in these patients, a certain immune cell is powerfully attuned to controlling HIV: It kills most of the virus and prevents what remains from replicating out of control and causing harm.
Because so little of the virus circulates in their bodies, elite controllers are unlikely to infect others, but they still must take precautions.
Just how well protected these patients are seems to vary. Some stave off HIV symptoms for two decades before getting sick, while others have been infected for 30 or more years and are still healthy. Increasingly, as they age, elite controllers have started taking HIV drugs to prevent the possibility of becoming sick.
For years in the 1990s and early 2000s, scientists focused largely on harnessing what they learned about elite controllers into developing a vaccine to prevent HIV infection. When those attempts failed, many scientists stepped away from the elite controllers and focused on other vaccine strategies.
“People around you are getting sick, and you start to feel like you should share that with them.” GEORGE FOX A PARTICIPANT IN THE ELITE CONTROLLER GROUP
But a few scientists stuck with the elites, convinced that what their bodies were able to do naturally was too important to ignore. Their work has since shifted toward finding a cure.
“We’ve just scratched the surface of this research,” said Dr. Steven Deeks, a professor in the UCSF division of HIV/AIDS at San Francisco General Hospital who has built his own cohort of elite controllers.
People infected with HIV in the 1980s presumed they would die within a few years. They had little reason to believe otherwise. And the elite controllers had no way of knowing there was anything special about them. So even as they remained healthy, many spent years waiting for their turn to come.
“One of my best friends, he got infected about the same time I did. He started to get sick, he started declining, and I was in a panic,” said George Fox, now 60, and living in Sacramento. “But I had to stop and think, ‘Why am I doing this to myself? Bill’s getting sick and I’m not. And that’s good.’
“For me,” he said, “it was a double-edged sword.”
Fox joined Levy’s elite controllers study in the late 1990s, when he decided there was something different about him. His best friend had died of AIDS by then, and so had a longtime partner. But other than a bout of bad thrush — a painful rash in his mouth — shortly after he was infected, Fox remained abashedly healthy.
As time went on, he began to feel guilty. He had a career and a home. He’d never been sick, and he didn’t need the drugs that in their earliest iterations made those with HIV so ill.
Around him, friends were “dropping like flies,” Fox said. Survivors would sit around trading traumatic stories — of near-death experiences, gruesome infections, debilitating drug side effects — and Fox would just listen, awkwardly unable to participate.
“Oh my God, the survivor’s guilt kicked in,” Fox said. “People around you are getting sick, and you start to feel like you should share that with them.”
For many, there’s a sort of identity built around being HIV-positive, especially among long-term survivors who endured the worst of the epidemic. These “poz” men and women banded together, building a community based not only on shared grief and horrors but resiliency.
Many elite controllers, though, say they don’t feel fully connected to the HIVpositive community. They certainly don’t identify as HIV-negative: They’ve feared for their lives at times, and faced the stigma of being among the infected. But much of the experience of being positive doesn’t resonate with them. And that can be isolating, some said.
“It’s like being between two worlds,” said Kai Brothers, 54, another participant in Levy’s elite controller group. “I never really felt a part of that world of somebody who is HIV-positive. I didn’t have anything going on that would relate me to what the others had to endure.”
Choi felt a little more connected — largely, he thinks, because he spent years as a caretaker for the sick during the epidemic of the 1980s and ’90s. He didn’t have time to be afraid for his own health, he said, because he was too busy looking after others in San Francisco’s hard-hit gay community.
“It was my escape,” he said — a distraction, but also a way to feel useful.
In this time of crisis, Choi, who’d studied music for years, chose not to pursue a doctoral degree. He invested himself instead in caring for friends and, later, educating people in marginalized communities on how to protect themselves from HIV.
Like many other longtime survivors, he made decisions in his youth — based in part on assumptions that he would soon die — that he second-guesses now as he approaches 60.
“I don’t regret what I did with that time,” said Choi. But years later, he wonders whether he “really missed my calling in life. I had high ambitions for myself.”
For Brothers, turning to science — in particular, volunteering his blood and his body to Levy — helped him assuage the isolation he sometimes felt. It made him feel connected, knowing there were others like him.
But eventually his time, too, began to run out. As he’d always feared, his immune system weakened. After more than two decades living with HIV, the virus started to win. He was startled by the rush of disappointment he felt following those first bad blood results two years ago.
“I had to realize, that’s not me anymore. I’m not infallible,” Brothers said. “I’m not this super being that can just fight off disease forever.”
For the first time in his life, Brothers was prescribed medication to treat HIV. Today, he’s as healthy as ever.