Just out., February 21, 1997, Page 21, Image 21

ju s t out T fsb ru a ry 2 1 . 190 7 ▼ 21
SENTENCED TO LIFE
Continued from page 19
anymore. So what has happened at Chris
Brownlie House, and similarly at Boston's
Mission Hill hospice, seems almost like the
happy ending of a movie. It calls up images
from the end of the film Longtime Companion,
when the clock turns back to a time before we
knew so much sickness and grief.
Except, of course, we are not at the end of
the movie. AIDS service organizations, hospital
wards and even hospices are still unfortunately
necessary and will probably be so for years to
come. But there is no question that treatment
advances have shifted the paradigm of what it
means to serve the HIV/AIDS community.
Even before the introduction of protease
inhibitors as a treatment for HIV, AIDS service
organizations that were originally set up to offer
what comfort and help they could to the dying
were adapting to serve people for whom AIDS
had become a chronic, long-term disease. But
the hope offered by protease inhibitors has
clearly accelerated that process.
For example, due to the increasing demand,
the AIDS Healthcare Foundation started mak­
ing plans three years ago to build a new hospice.
It opened just five months before Chris
Brownlie House closed. Meanwhile, because
the foundation provides services without regard
to the ability to pay, it has been swamped by the
costs of providing protease inhibitors— so
swamped that it entered into a partnership with
a medical group operated by AIDS pioneer Dr.
Michael Gottlieb in order to cut costs enough to
keep all of its clinics open.
“It’s a strain, but it’s a strain that I welcome,”
says Kenslea. “It's good bad news. But the big­
ger picture is that this is forward moving.”
In Texas, AIDS Services of Austin traditional­
ly provided dents with long-term case managers
who would see and support them through to the
end. “The more dependent someone is because of
their deteriorating health, the more they want the
physical and emotional support of a case manag­
er,” explains Peter Brownlie (no relation to
Chris), the agency’s executive director.
Now, though, people whose health has
improved because of new treatments can be
more independent, Brownlie says. And because
they feel better, many of them don't need the
same level of emotional support. So at AIDS
Services of Austin, resources are being shifted
away from long-term case management and
toward providing information and short-term
support—handling questions about going back
to work, problems with Social Security, getting
into programs to pay for drugs, etc.
Brownlie says his organization is also renew­
ing emphasis on its prevention message because
of the fear that the media attention about the new
treatments may make some people less vigilant
about safer sex. He also expects that his clientele
will continue to shift, as it has been doing in
recent years, away from predominantly white
gay men and toward heterosexual people of
color, especially women, and drug users. These
often less-advantaged groups may have less to
gain from protease inhibitors, due to the cost of
the drugs and the complexity of their use.
“We will need to continue to diversify our
staff and diversify our programs,” he says.
And in the long term, “I think we will
become smaller. I think the need for what we do
will decrease,” Brownlie says. “And that’s fine.
We’ve always said that what we wanted was for
there to no longer be a need for what we do.”
And yet, that creates a dilemma for people
who work in AIDS service organizations. Many
abandoned other careers to dedicate themselves
to helping with the AIDS fight, often inspired
by their own personal losses. But if protease
inhibitors succeed in turning AIDS into a chron­
ic manageable disease, those miracle drugs may
put many of these dedicated people out of
work—particularly in agencies that provide
end-stage services, such as hospices, and groups
that provide meals to shut-ins.
“As happy as they may be, in a practical
way, they are wondering what they will do
next,” says Mark King of AID Atlanta, a former
actor who spent the past decade working as an
HIV/AIDS educator in Atlanta and Los Angeles
after testing positive in 1986. "That’s only nat­
ural. Many of them have spent much of their
professional life doing this.”
lived life too long on the edge of death—to go
back to where they were before the war.
On a January night, a room full of survivors
of the AIDS fight sat and listened as Atlanta psy­
chologist Mike Sayer outlined his “war” hypoth­
esis. He told them he was finding evidence of
post-traumatic stress in his patients who were
getting better because of treatment with protease
inhibitors. No one raised their hand or their
voice to contradict him. One by one, they con­
firmed his hypothesis as they outlined the prob­
f all of the recent hope and hype have gener­
lems and pressures and frustrations they now
ated uneasiness in AIDS service workers,
face as they renegotiate their lives.
they have also generated an uneasy, nagging
In describing the uncertainty his lover was
question for those who lead these groups: How
going through, one man made this statement—
will all of this affect fund raising?
one that might seem, at first blush, astounding.
The creation, from scratch, of a support net­
But in this room, no one was astounded.
work for people living with AIDS in the face of
“Getting better,” he said1, “is not always a
government indifference stands as one of our
better thing.”
community’s most remarkable achievements.
On this night, no one stood up to say they
But as these organizations, driven by unfortu­
didn’t welcome the promise offered by protease
nate necessity, have grown over the years, so
inhibitors, that they preferred death. But death,
too have their fund-raising requirements.
even when it is not welcomed, is final, exact.
Anything that affects the public’s perceptions
Once it is accepted, plans can be made, affairs
about AIDS, then, has the potential for remark­
put in order, good-byes said. Life, on the other
able affect on their ability to raise the voracious
hand, can be messy, unpredictable. So perhaps it
amounts of money they need.
is not quite so astounding that some of those
“I think there are people out there who have
who came to accept being sentenced to death
identified protease inhibitors as a cure, and there
and now find themselves possibly sentenced to
is a sense that may decrease the sense of urgency
life are not just skipping merrily along, hum­
about donating,” says Austin’s Brownlie. “But it
ming a carefree, happy tune. All across the
hasn’t had an impact on us yet.”
country, support groups that once comforted the
Like the fears about a surge in risky sex
dying are now switching gears to offer support
because of the mistaken perception of HIV as
to the living.
curable, the diesis that fund raising may be
This reaction among some of those most
endangered also remains unproven at this point,
directly affected stands in sharp contrast to the
with only isolated anecdotal evidence. Many
emotional chord struck among those on the out­
echo the analysis of Thom Weyand, develop­
side looking in. For those who are still HIV neg­
ment director at the NAMES Project
ative, the sword of Damocles may seem a little
Foundation, who says, “I acknowledge that is
further from their neck; family members and
probably happening, but we haven’t experienced
friends of the afflicted may also feel less
it to date as far as I can tell.” Weyand also says j wrought (“This makes it easier for them,”
other factors, including the fact that the AIDS
grumbled one man at the Atlanta forum). And
fight has now stretched 15 years, could account
the mainstream media has been positively
for some reports of fund-raising difficulties.
giddy— Newsweek wove its cover story on this
“But certainly, it is logical to think that per­
subject around a long-term survivor now com­
ception can have a negative effect when it comes
peting in triathlons.
to trying to raise money,” says Jeff Monford of
“There are some people like that. But for
the National AIDS Fund in Washington, D.C.
most people, this all seems really scary,” says
“We are anticipating that could happen.”
Jon Argenziano, who helps lead a support group
Because of the access problems related to
for long-term survivors at the AIDS Action
protease inhibitors, gay America, which has
Committee in Boston. “You see this sort of
been the backbone of AIDS fund-raising, will
guarded euphoria. People feel better, but it is
probably benefit more from this breakthrough
almost like they are waiting for the anvil to drop
than those in other marginalized communities
on their head.”
who have entered the AIDS nightmare after us.
Argenziano says the emotions he's seen
So if creating and funding the AIDS service net­
among those whose lives have improved on
work in the beginning was a challenge that the
protease inhibitors run the gamut, with uncer­
gay community met, then the next test of char­
tainties and frustrations about going back to
acter may be whether we continue to provide
work, their financial future, and whether these
the same level of support to these service j treatments will actually continue to work in the
providers, even if their focus shifts away from
long term topping the list.
predominantly white gay men with HIV/AIDS
“I think what they’re really asking in all of
to those in potentially greater peril.
this is, ‘What is going to become of me?’ ” he
says. Argenziano also relates how another client
in Boston reacted with outright anger.
“He said, ‘How much more of this can l go
through?’ He feels totally alienated. He thinks he
has to reinvent himself again.” says Argenziano.
Jim Thurman, a long-term survivor who
publishes a newsletter for people living with
HIV in Texas called “Positive Threads." also
IDS has been a war: ugly and harsh and
sees a cautious sort of hope coming from those
brutal and numbing. Comrades have died.
who have been feeling better. He also says prac­
The enemy has been cunning and unceasing.
tical worries about the future are driving a lot of
Death has obscured hope, dashed dreams,
the feelings of uncertainty. But he doesn’t
exiled the future.
believe stresses associated with this new reality
And when a war is over—or when perhaps
are driving these mixed emotions.
the enemy just seems to be in retreat—there is
“I don’t think this provides any more stress
not always, or only, euphoria. Some soldiers
than was already there,” Thurman says. “We’ve
came back from Vietnam ill equipped to cope
become good at dealing with stress.”
with their new reality, unable to sleep, keep a job,
Thurman has also experienced firsthand
sustain a relationship. They checked for snipers
another emotional component, one raised by all
on every rooftop. They had seen too much—
of the hope and hype about protease
I
Part 5: Mixed
Emotions
A
inhibitors—a sense of guilt. For while he has
responded to the treatment, it hasn’t been effec­
tive for a close friend of his.
“I felt some survivor’s guilt because it
worked for me and it didn't work for him,”
Thurman said. “But then I thought, ‘I might be
in that boat someday, too.’ What I’ve done per­
sonally is taken the attitude of not worrying
about what l can’t control.”
“It can be really emotionally devastating for
people who go on protease inhibitors and don’t
see the same effects they see in their friends, or for
whom the side effects are so intense that they can’t
continue.” says Peter Brownlie, executive director
of AIDS Services of Austin in Texas. 'They ask
themselves all over again, ‘Why me?’ ”
uring the 15 years of the war, those living
with HIV were encouraged to empower
themselves with information. The message was
not to trust blindly medical science or doctors
but to participate fully in treatment decisions,
based on independent knowledge.
What increases the level of frustration that
some people are feeling with protease inhibitors
is the fact that there is little long-term data
available to empower people. These drugs were
approved by the Food and Drug Administration
under an accelerated process, which means that
even doctors aren’t sure how long this new­
found health might last. Many people feel as if
they are making decisions blindly, which
increases their anxiety.
In addition, as in Vietnam, the war itself
changed the warriors more dramatically than it
did the outside world, making reintegration a
difficult task.
Among the observations tossed out in the
session with Sayer was that society is ordered in
this fashion—you’re bom, grow up, are educat­
ed, establish yourself in a career and a relation­
ship, and then accumulate the wherewithal for
the golden years. Under this scenario, the
process of life is a means to an end.
Even many gay people not living with HIV
have eschewed that model, of course. But those
directly in the line of fire came to particularly
understand that the process of life was impor­
tant for its own sake— friends, experiences,
happiness. For there were to be no golden years.
Perhaps, in the long ran, protease inhibitors
may give people living with HIV a longer bio­
logical existence. But even then, they will have
to spend the rest of that biological existence
inside a society where so many facets of day-to-
day life revolve around a model that they do
not—possibly cannot—fit.
‘T he thing you want more than anything
else,” said one man at the Atlanta gathering, “is
to get back to your normal life. And that isn’t
happening.”
D