ju s t o u t T fe b ru a ry 2 1 . 1 9 9 7 ▼ 17
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Protease inhibitors hold the prom ise o f a way out o f the AIDS nightmare but they also represent a pu zde with ad-new pieces
story by Richard Shumate ▼ photos by Linda Kiiewer
funded drug programs. The demanding regimen
Part 1: Edge of Hope, | requires
taking dozens of pills a day at certain
times under specific conditions—difficult for
Edge of Fear
people who are homeless or addicts or poorly
he crowd of about 100 was mostly male,
mostly white, mostly gay. As these people
walked into the slightly tattered auditorium of
an inner-city high school, many stopped to greet
and hug longtime friends, fellow warriors.
Some faces showed the strain of battle, some
bodies still bore the obvious traces of wasting.
But these were not, in either body or spirit,
the walking dead.
As the night’s program began and the con
versation grew, a weathered but still handsome
Latino man with more than a trace of an accent
spoke up to ask a question, prefacing it with a
simple, elegant statement of why he had come
out to this forum on this November night. He
was trying, he said, “to figure out what in the
hell I’m supposed to do now.”
The audience roared with a knowing laugh
ter. These were people who have been living
with HIV, or struggling against AIDS, or caring
for and loving those who have been staring into
the pit of a holocaust.
Sitting nearby, another man prefaced his
own question with a succinct description of the
dilemma he now sees for himself.
“I think there’s life left in this old dog now,” 1
he said. “I just wonder if this old dog can leam j
new tricks.”
Up on the stage, facing the questioners, were
activists and lawyers and psychologists and
people in the insurance business— learned men
and women all—who had gathered here to offer
their best advice as to what in the hell these peo
ple were supposed to do now. But as the night
drew on, it became obvious that they would
only be able to provide advice, not answers.
This gathering took place in Atlanta's gay
Midtown neighborhood, but it could just as eas
ily have taken place in Portland or Boston or
Austin or any other place where AIDS has taken
its toll over the past 15 long years. Because as
the lesbian and gay community enters 1997, we
are entering a new reality, a place where AIDS
may no longer be the death sentence it once
was. And we have begun to gather in forums
such as this to sort out what that might mean.
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educated. And in people in the later stages of
AIDS who have undergone numerous other
treatments, protease inhibitors seem to be less
effective.
But for people like those who came to that
auditorium in Atlanta—part of a gay communi
ty that is organized, with financial resources
and established networks for disseminating
treatment information and supporting people
living with HIV—protease inhibitors are the
edge of a world of hope.
They have also ushered in a world of
t July’s International Conference on AIDS
in Vancouver, B.C., scientists reported a
change—and a world of fear.
major breakthrough. Medical studies on a new
On the West Coast, AIDS medical practices
class of drugs, called protease inhibitors,
and hospices have begun to close. Viatical com
showed that when used in conjunction with
panies have stopped buying up life insurance
existing AIDS drugs they can give many—but
policies. AIDS service organizations have start
not all—people with HIV a dramatic new lease
ed thinking about how to change programming
on life. In some patients’ blood, the amount of
to meet new needs—and how they’ll pay for it
virus has dropped to undetectable levels, lead
if all this hope puts a damper on bind raising.
ing to a still-unproven hypothesis that this treat
Safer-sex educators are scrambling to come
ment could even eradicate HIV altogether.
up with a new message that will keep people
Estimates are that 100,000 people in the
from engaging in risky behavior based on the
United States are now taking protease
mistaken belief that HIV can now be cured eas
inhibitors, and the number is climbing. The
ily with a few pills. Those who have seen dra
mainstream media has given this breakthrough
matic improvements in their health because of
big play. The man who presented the good news
protease inhibitors now have to decide whether,
in Vancouver. Dr. David Ho, was even named
or when, to go back to work. They have been
Time magazine’s Man of the Year.
left to wonder how all of this will affect their
Because of the cost and complexity of treat
medical insurance and finances.
ment with protease inhibitors, this is far from a
People who live with death in full view live
final panacea. The drug regimen can cost from
differently—and make different decisions—than
$10,000 to $25,000 a year, putting it out of , do people who live with death as an abstract,
distant concept. Decisions about careers, rela
reach for uninsured people without sufficient
financial resources or access to government-
tionships, friendships and finances that seemed
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logical and constructive while dying can look
downright illogical and destructive when there
are 20 or 30 or 40 more years to go.
Many of these people find themselves alone
at the edge of hope. The lament of that man who
asked what in the hell he was supposed to do
took on an even more poignant tone as he went
on to tell the audience that most of the people in
his gay family were dead.
“I find myself in the unehviable position of
being friendless.” he said.
The media has dubbed this “the Lazarus syn
drome.” But after explaining how Jesus brought
Lazarus up from his deathbed, the Bible doesn’t
go on to give us detailed information about how
Lazarus went about piecing his world back
together after being sentenced to life.
‘T o people not intimately familiar with
AIDS, this must seem like the most selfish, self-
absorbed behavior they've ever witnessed. I’m
sure they're saying, ‘You know, you should be
grateful just to be alive,’ ” says Mark King, an
Atlanta AIDS educator who has lived with HIV
for more than a decade. “But it is the same kind
of shock to the system that you have when you
believe you are going to live as long as every
body else and then find out that you won't.”
Of course, in the years since the first cases of
AIDS were reported among gay men in San
Francisco and New York in 1981, the gay com
munity has often been at the edge of hope, only
to find that hope dashed. Those fighting the dis
ease had become skeptical, perhaps even a bit
cynical, when headlines trumpeted yet another
breakthrough. But the reaction to this news has
been different. Even in the HIV community, the
sense of promise is palpable.
“It has produced this emotional change that’s
different than anything else I think we've seen,”
says King. “I think part of it is because we haven’t
hit the morning after yet. With those other drugs,
the morning after came rather quickly.”
o understand the promise of protease
inhibitors—-and why the morning after may
not soon loom on the horizon—it is important to
understand a little bit about how HIV works and
how these drugs help the body fight back.
To multiply itself, a strand of HIV enters a
white blood cell. Through a series of biochemi
cal reactions helped along by specific enzymes,
it turns the cell into a mini factory churning out
more and more HIV. But this process can be dis
rupted by inhibiting production of the enzymes
needed to make those reactions go.
Scientists have identified three of these
enzymes, known as reverse transcriptase (RT),
protease and integrase. The first wave of AIDS
drugs, such as AZT, ddl, ddC and 3TC, inhibit
ed production of RT. But they weren’t 100 per
cent effective in shutting down production of
HIV, and these newly produced strands adapted
to the drug and became resistant to its effects.
That’s why within two years, AZT, when used
by itself, becomes virtually worthless.
Protease inhibitors (the three now on the
market are Invirase, Crixivan and Norvir) attack
the second enzyme, protease. So, combined in a
“cocktail” with AZT and other RT inhibitors,
they put up a second line of defense. To repro
duce, HIV has to overcome the suppression of
both enzymes, making it much harder for the
virus to survive, adapt and develop resistance.
However, initial treatment trials have shown
that protease inhibitors are less effective for peo
ple who have already been taking RT inhibitors
and have developed partial or complete resis
tance to them. In essence, their HIV still only
has to go through one hoop instead of two, mak
ing it easier for HIV to survive and adapt.
What makes this multiple-drug regimen so
promising is that new RT and protease
inhibitors, stronger and more effective, are
being developed, giving more options for peo
ple who have adverse reactions to existing
drugs or show signs of resistance to them. Also
on the horizon are integrase inhibitors, which
will attack the third enzyme. That could lead to
the development of a third hoop through which
HIV would have to jump in order to multiply.
But the euphoria now sweeping through the
HIV/AIDS community does not come from sci
entific promise alone. It is being fueled, too, by
the atmosphere into which this promising news
about protease inhibitors has surfaced.
After more than 15 years of organizing and
fund raising and fighting off the effects of the
disease—and burying those who didn’t make it
through the fight—people were burned out, per
haps even resigned to the idea that AIDS was
going to be there, killing us, for a very long
time. So we have leapt at the hope.
Not surprisingly, no one inside that Atlanta
auditorium was expressing remorse that the par
adigm under which people with HIV/AIDS
have lived since 1981 has now changed. Yet
they were clearly not yet comfortable with all
that that might mean.
Panelist Tony Braswell, who heads Atlanta’s
main AIDS service agency, AID Atlanta, and
who has been fighting this fight for years, put it
this way:
“Every part of this puzzle,” he said, “has to
be refigured.”
Continued on page 18
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