From: MShernoff@aol.com
Date: Wed, 25 Jun 1997 12:14:12 -0400 (EDT)
Subject: AIDS and Hope


A History of Hope: The HIV Roller Coaster
Michael Shernoff, MSW
Published in FOCUS: A Guide to AIDS Research and Counseling, V.12, N.7, J=
une, 1997
  Michael Shernoff 1997 =

Permission is granted to copy or reproduce this article either in full or=
 in part, without prior written authorization of the author on the sole c=
ondition that the author is credited and notified of reproduction.
Hope is essential for all people in order to create meaning in our lives,=
 but it is especially crucial in the depths of an epidemic. In the early =
days of AIDS, hope was in short supply for everyone from people with HIV =
disease to their caregivers and communities. As the epidemic progressed, =
hope emerged in the laboratory with each new experimental treatment only =
to be disappointed in the field. In fact, a history of hope and disappoin=
tment is tantamount to a history of the epidemic: tracing its clinical an=
d scientific milestones and the related mental health challenges. This ar=
ticle briefly attempts to trace this evolution and relate it to the curre=
nt treatment paradigm with the goal of learning something about frustrati=
on and resilience.
=0D
"Hope has at least two components: a positive focus and a future orientat=
ion," according to Columbia researcher Judith Rabkin and her colleagues, =
who go on to explain that when young or in excellent health, it is normal=
 to assume that life will continue into a distant future.1 People with AI=
DS do not have the luxury of anticipating time or presuming longevity. Ye=
t, Rabkin continues, "Even in extreme circumstances, hope may shrink but =
it need not disappear altogether. One can think positively ahead to the c=
oming week, the coming day, or even the coming hour." Jerome Frank, a psy=
chiatrist and a pioneer in identifying the therapeutic roles of hope and =
persuasion, affirms this notion, defining hope independent of a distant f=
uture, "as the perceived possibility of achieving a goal."2
=0D
Can even this limited concept of hope survive the ravages of history? Psy=
chologist Steven Schwartzberg observes, "AIDS changes rapidly. The ground=
 keeps shifting. Medically, psychologically, demographically, much of wha=
t mattered in 1985 was antiquated by 1990. The concerns of 1996 only fain=
tly echo those of 1991, or 2001."3 A quick review of this history illustr=
ates how scientific research has raised hopes only to disappoint them and=
 later, somehow, has contrived to renew them. This has been the path the =
protease inhibitors have followed. First introduced in 1991, the protease=
 inhibitors were touted as "the next generation of antivirals,"4 more pow=
erful than zidovudine (ZDV; AZT) and its relatives, only to prove in 1994=
 to be readily resistant and cross-resistant in monotherapy. But in 1997,=
 in combination with other antiviral drugs and at lower doses, the protea=
se inhibitors have spelled the most magical words of AIDS lexicon: chroni=
c manageable condition. =

=0D
History Repeating
Rabkin and colleagues have identified some of the milestones in the rolle=
r-coaster history of HIV-related treatment.1 In 1984, Health and Human Se=
rvices Secretary Margaret Heckler confidently predicted a brief epidemic =
with an announcement that still haunts us: "There will be a vaccine in a =
very few years, and a cure for AIDS before 1990." =

=0D
In 1986, at the Paris AIDS Conference, Samuel Broder reported on prelimin=
ary trials of ZDV and laboratory experiments of zalcitabine (ddC) and did=
anosine (ddI), asserting, "I believe AIDS is curable."4 For four years, Z=
DV and its relatives dominated treatment, but were periodically challenge=
d by other drugs usually introduced with great fanfare. Ranging from the =
"alternative" to the "experimental," these treatments included bone marro=
w replacement, egg lipids, interleukin 2, ribavirin, dextran sulfate, HPA=
-23, Compound Q, blood heating, hypericin, isoprinosine, soluble CD4, cyc=
losporine, and GP160.
=0D
It was not so much that these drugs were hyped in the medical literature =
or even among most people with HIV disease, but that somehow, each gained=
 a vocal and committed following whose enthusiasm promised something extr=
aordinary. Scientific claims were usually qualified by "it appears" or "t=
his has to be proven in the field," but these disclaimers evolved into a =
predictable litany, heard but dismissed as so much fine print, overshadow=
ed by bolder and less grounded pronouncements of a brighter future, of ho=
pe. And so it was that we-everyone drawn into the orbit of AIDS-urged our=
selves from one "cure" to another, raising hopes to unreasonable heights =
so that even when a drug actually had some positive effect, it rarely sat=
isfied expectations. =

=0D
For the several years following Heckler's announcement, so much was being=
 learned about HIV disease, so many theories seemed promising, that there=
 was a sense of optimism, a belief that HIV-related research was moving f=
orward toward a resolution. But this momentum could not sustain itself wi=
thout new breakthroughs: breakthroughs-even premature or false ones-seeme=
d (and seem even today) to be the only thing that kindled hope. Increment=
al advances were never good enough, and advances followed by setbacks wer=
e devastating. As optimism waned until 1995, the most positive assertion,=
 better characterized as a consolation, was that scientists were gaining =
an increasingly precise knowledge about the virus and disease progression=
=2E
=0D
In 1992, an advertisement for Time Magazine stated, "In the mid-1980's, s=
cientists believed a vaccine for AIDS would be ready in two years. Seven =
years late; no vaccine, no cure, no reliable treatment."1 And an Op-Ed co=
lumn in the New York Times, written by Harvard researcher William Haselti=
ne, concluded, "Why...does the future look so bleak? The answer is that g=
iven what we know today, it cannot be predicted when, or even if, an effe=
ctive treatment will be developed and when, or if, a vaccine will be deve=
loped."1 =

=0D
The Berlin AIDS conference in 1993 has been acknowledged as a low point i=
n hope. Dominated by the Concorde study's apparent finding that ZDV was n=
ot an effective early intervention, reports of the conference focused mor=
e on negative findings than on positive ones, for instance, advances in t=
reating opportunistic infections. In an article on the conference and thi=
s response, Stephen Follansbee and James Dilley wrote: "Confirmation of t=
he limits of the nucleoside analogues and of the painstaking effort requi=
red by antiviral research has left resignation where only two years ago, =
there were high hopes."6
=0D
In a 1994 article in The Nation, University of California, Berkeley profe=
ssor David Kirp wrote: "Hardest is acknowledging that AIDS is a momentary=
 disaster that will be stopped by scientists who, in their quest for the =
Nobel Prize, will come up with the magic bullet. The hope early on was th=
at HIV would, like polio, be tamed by knowledge, but the fact is that HIV=
 is much more like cancer, stubbornly resistant to the ingenuity of scien=
tists."1
=0D
Hope and Therapy
As a psychotherapist who has worked with people with HIV and AIDS since t=
he earliest days of the epidemic I have watched as the research caused ho=
pe to wax and wane. While I had not believed that I would see a cure for =
AIDS in my lifetime, I have never challenged a client's or friend's hope =
that a cure would be discovered in time to benefit them and their loved o=
nes. It is not my place to confront hopes simply because I consider them =
unlikely. After all, what do I have that could replace those dashed hopes=
?
=0D
In fact, much of my work is, in keeping with Judith Rabkin's definition o=
f hope, trying to help people sustain hope for goals that are more immine=
nt than a cure, for realistic and concrete objectives. Such hopes might b=
e as tangible and specific as: undergoing an improvement in health; avoid=
ing severe pain; or living long enough to travel, accomplish a specific g=
oal, attend an important event, complete college, or change careers. They=
 might be as ethereal as believing in an afterlife and the reunion with l=
oved ones, or as simple as being remembered after death.
=0D
Hope was in short supply in 1993, when reports from the Berlin conference=
 on AIDS translated directly into hopelessness among my clients with HIV =
disease: in particular, clients who were already depressed, experienced a=
n increase and worsening of symptoms of depression as a direct result of =
the bad news from Berlin. As these individuals lived longer and experienc=
ed improved health and increased energy, hope rebounded and depression wa=
ned.
=0D
But, hope can be a precarious entity even for those lucky enough to be ac=
hieving their goals. I am currently treating clients who have benefitted =
from combination therapy, but who are experiencing attacks of anxiety, fe=
elings of unreality, depression, suspicion, and anger in response to the =
improvement in their health. Usually they are confused by these reactions=
 and often are ashamed to talk about them. As welcome as an improvement i=
n health may be, it cannot yet be trusted to last, and because of this, e=
ven a dramatic resurgence of good health breeds a reluctance to invest to=
o much hope too early in the game. Previous disappointments make it incre=
asingly difficult to muster and sustain optimism and lead in part to the =
well-documented emotional roller-coaster of living with HIV disease.7 One=
 client characterized his restored health as being " a little like living=
 on death row and getting a stay of execution." =

=0D
"I had a date when I knew I was going to die, and now all of a sudden I'm=
 going to be allowed to live for a while longer. Who knows how much longe=
r? Will I live to be an old queen? Will the virus mutate sometime in the =
future making the current treatments ineffective? Obviously I don't know.=
 I do know that instead of being overjoyed, I feel like I'm being jerked =
around."
=0D
Another factor that erodes hope, according to Andrew Jacobs, is the estim=
ate that between 10 percent and 30 percent of people who try combination =
therapy fail to respond. Jacobs adds, "The perception that the plague is =
over has only compounded the misery of those who have failed on combinati=
on therapies."8 For people who have had their hopes dashed countless time=
s, it is crushing to be left out of this so called success story. =

=0D
A client of mine put it this way: =

"I don't like to whine, but it is really difficult hearing all the good n=
ews, and how these drugs have heralded the end of the plague. That has si=
mply not been my experience. It's very lonely not being able to talk to o=
ther people about what it's like hearing all the good news and feeling to=
tally left out."
=0D
Jacobs goes on to quote Jeffrey Karaban, Deputy Executive Director of Bod=
y Positive, a New York agency that provides emotional support to people w=
ith HIV disease. Karaban has observed a growing chasm between those who r=
espond to treatment and those who do not: "A lot of old timers are feelin=
g abandoned. They fear they'll become lepers, written off by drug compani=
es who can't make a buck off of them."8 =

=0D
Reflecting this sentiment, another client of mine, remarking that the fai=
lure of combination therapy to work for everyone has intensified his ambi=
valence about hope: =

=0D
"It feels somehow self-indulgent to be so caught up in relishing my own i=
mproving health. My best friend has not been able to tolerate these drugs=
=2E..[But] why should I be able to get away with not having any side effe=
cts, when he was debilitated by them? It really bothers me that Tony can'=
t take them and I can. In addition, with my knowing that they haven't bee=
n of help to him, I worry that what happened to him will eventually happe=
n to me."
=0D
Conclusion
I am a "non-progressor," still asymptomatic after 20 years of HIV infecti=
on. Hope has been an essential element for me in how I deal with HIV dise=
ase both personally and professionally. When I first found out that I was=
 HIV-positive, I was 36 years old, and hoped that I would live to be 40. =
Now at 46, in perfect health and with no detectable viral activity for mo=
re than a year, I increasingly expect to live out my normal life. =

=0D
Many people have truly come back from the dead and are, viscerally and wi=
thout qualification, hopeful. But this truth cannot erase the reality tha=
t people are still dying from AIDS, and that new people are still becomin=
g infected. Nor can it blot from memory those who have died and the belie=
f that had they survived a little longer, they would, in the end, have li=
ved a lot longer. And some, like the client I mention above, will remain =
frightened that as treatment has failed for their friends and has failed =
in the past, so will it fail for them now.
=0D
What is amazing, miraculous, and consistently inspirational to me is that=
 in the midst of all this, people manage to construct belief systems that=
 include hope at the core. The ability to maintain hope even in the depth=
s of the most dire situations is one of the most astounding and uplifting=
-ultimately hopeful-aspects of the human psyche, forming the basis for mo=
st traditional religions and personal spiritual beliefs. =

=0D
The ways that people with HIV disease hold onto hope and allow what they =
hope for to expand, contract, and evolve over the course of their illness=
 is essential to living well with this disease. The hopes of many of my c=
lients have offset the hopelessness and despair that is so much a part of=
 this illness. Their hope has nurtured me, and it has enabled me to suppo=
rt other individuals in their struggles to search for hope in their lives=
 and redefine illness in the face of treatment success. =

=0D
References
1. Rabkin J, Remien R, Wilson, C. Good doctors, good patients: Partners i=
n HIV treatment. New York: NCM Publishers, 1994.
2. Frank J. Persuasion and Healing: A Comparative Study of Psychotherapy,=
 rev. ed, Baltimore: Johns Hopkins University Press, 1973.
3. Schwartzberg, S. A crisis of meaning: How gay men are making sense of =
AIDS. New York: Oxford Unviersity Press, 1996.
4.Katz, M. Medical Update: Next generation of antivirals. Being Alive New=
sletter. March, 1993.
5. Helquist M. AIDS therapies: An update from Paris. FOCUS: A Review of A=
IDS Re-search. 1986; 1(10): 3-4.
6. Follansbee SE, Dilley JW. AIDS treatment after Berlin. FOCUS: A Guide =
to AIDS Research and Counseling. 1993; 8(10): 1-4.
7. Getzel G. AIDS. In Gitterman A, eds. Handbook of Social Work Practice =
with Vulnerable Populations. New York: Columbia, University Press, 35-64.=

8. Jacobs A. The diagnosis: HIV-positive. The New York Times. February 2,=
 1997; Section 13: 1- 13.
Author:
Michael Shernoff, MSW is a psychotherapist in private practice in Manhatt=
an and is adjunct faculty at Hunter College Graduate School of Social Wor=
k. His most recent book "Gay Widowers: Surviving the Death of A Partner" =
will be published in late 1987. He can reached via his web site at http:/=
/members.aol.com/therapysvc or via email at mshernoff@aol.com.
=0D

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