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Photo: Gabrielle Lurie, The Chronicle |
Kai Brothers (center), who has HIV but no signs of AIDS, waits for the BART train.
October 28, 2016
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Lucky Choi has been thinking about making music again.
He’s 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 partner now. 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’s
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 1 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.
Now, these survivors are among thousands of men and women in the
United States who have lived for 20 years or longer with HIV.
Nationally, more than half of all people living with HIV are age 50 or
older; in San Francisco, the number exceeds 60 percent.
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| Photo: Gabrielle Lurie, The Chronicle |
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Lucky Choi, 59, who thinks he was infected with HIV in the late 1970s
but is able to naturally fend off the virus, smiles after getting his
blood drawn in Dr. Jay Levy’s office at UCSF.
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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 UCSF offices of Dr. Jay Levy to
give blood, from which doctors obtain snapshots of the virus and his
immune function.
Levy, whose lab was among the first in the world to identify HIV as the
cause of AIDS, has been working with elite controllers since the
mid-1980s, when he started noticing that some of his patients weren’t
getting sick, even as their friends and partners fell ill.
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| Photo: Gabrielle Lurie, The Chronicle |
Dr. Jay Levy demonstrates how he checks the vital signs of patient Lucky Choi, 59, who has HIV but no signs of AIDS,
“I learned very early in my career, if you want to understand a viral infection, look at the survivors,” Levy said.
So when a man arrived in his office in 1984, saying he was certain he
was positive but also puzzled to be healthy, Levy knew he had someone
special. Over the years, he built a cohort of such men, and women, and
produced dozens of papers on them. But the path toward a discovery, and
ultimately a cure, has been more complicated than anyone expected.
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
scien
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.
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Photo: Gabrielle Lurie, The Chronicle |
Patient Lucky Choi, 59, who has HIV but no signs of AIDS, gets his blood drawn in Dr. Jay Levy’s office at UCSF.
These volunteers have made “heroic” contributions, Deeks said. Some
have been engaged for decades — donating blood once a month and offering
spinal fluid and tissue samples, too.
“The people who survived that early period of the epidemic, they lost
many of their loved ones and friends and sometimes their entire social
support system,” Deeks said. “They’re really motivated now through
altruism, to try to figure out what happened.”
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.”
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| Photo: Gabrielle Lurie, The Chronicle |
Kai Brothers (left), who has HIV but no signs of AIDS, watches a presidential debate with boyfriend Brian Walters.
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| Photo: Gabrielle Lurie, The Chronicle |
Dr. Jay Levy has been studying “elite controllers” since an HIV-positive but healthy man walked into his office in 1984.
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| Photo: Gabrielle Lurie, The Chronicle |
Kai Brothers (center), who has HIV but no signs of AIDS rides the Muni bus home from work.
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| Photo: Gabrielle Lurie, The Chronicle |
Kai Brothers, who has HIV but no signs of AIDS, finishes up at work in downtown San Francisco.
When Fox’s doctor prescribed him AZT, the early antiretroviral drug
that was the first to treat HIV but proved widely unsuccessful and often
toxic, Fox refused to take it. He framed the prescription and hung it
on a wall instead, taking it with him as he moved from place to place in
the 1980s and ’90s. He’s never taken any drugs to treat HIV.
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 HIV-positive 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.
He became particularly adept at sitting with young men who were
dying, easing them through their last breaths and consoling families who
couldn’t understand what was happening to their sons and brothers.
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.
Erin Allday is a San Francisco Chronicle staff writer. Email: eallday@sfchronicle.com Twitter: @erinallday
Health Reporter
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