Subject: protease inhibitor article
From: [email-masked]
Date: Tue, 4 Feb 1997 12:22:25 -0500 (EST)

Challenges and Dilemmas Regarding  Protease Inhibitors
Published in Body Positive, V.10, No. 3, March 1997
Michael Shernoff, MSW
 1997 Michael Shernoff
=0D
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
=0D
"I've been living for the past ten years waiting to die.  Now with protea=
se inhibitors I have to do a 360 degree turn around at a moment's notice.=
 If that isn't a mind fuck, I don't know what is!" (John, a person living=
 with AIDS in Manhattan)
On  November 10, 1996 an article authored by Andrew Sullivan appeared in =
the New York Times Magazine called "When Plagues End: Notes on the Twilig=
ht of an Epidemic."  This overly optimistic title reflects part of the te=
nsions that exist surrounding the newest class of antiretroviral drugs kn=
own as protease inhibitors.  For the first time since the onset of the AI=
DS epidemic, there is finally a reason to have hope that HIV illness may =
become a chronic and manageable illness for more than a small minority of=
 those infected.  Yet to proclaim that we are entering the "twilight of t=
he epidemic" gives false hope and is misleading.  For one thing there is =
no clinical evidence about how long these drugs will prove to be effectiv=
e, and for another they do not work for every person living with HIV and =
AIDS.  =

As a psychotherapist in Manhattan's Chelsea neighborhood, I have been at =
the epicenter of this health crisis both personally and professionally si=
nce it began. I have worked with hundreds of individuals with HIV both as=
 a professional and as a volunteer.  Additionally, I myself am infected w=
ith HIV and am what has been labeled a "nonprogressor," meaning so far I =
have remained asymptomatic after a confirmed exposure to HIV for over twe=
nty years. (Blood I donated as part of the New York Blood Center's pionee=
ring study of Hepatitis B in the mid 1970s was frozen, and after the deve=
lopment of the HIV antibody test proved positive for the antibodies to HI=
V type 1.) Thus issues relating to protease inhibitors are personally rel=
evant to me as well as to the people living with HIV/AIDS that consult me=
 as a psychotherapist.   Every day I work with people living with HIV and=
 AIDS and have engaged in numerous conversations with them about their re=
actions to this latest medical breakthrough.  This article will discuss a=
 variety of concerns that my patients, friends and myself have regarding =
living with HIV in the age of combination therapies that now routinely in=
clude protease inhibitors.
During and after the Vancouver AIDS conference last summer, the mainstrea=
m media reporting on what Drs. David Ho and Marty Markowitz of New York's=
 Aaron Diamond AIDS Research Center presented made it seem as if a total =
cure had been discovered.  In fact many ordinary people understood the re=
ports from Vancouver to be informing them that at last there was a cure, =
or at least something that completely controlled HIV in a person's body. =
I had two different HIV negative patients tell me that with these new med=
icines, AIDS was at last a treatable illness, and so they could r=82sum=82=
 high risk sexual activities.  They were not only disappointed but skepti=
cal of my explanations of what these drugs seemed able to do in the preli=
minary studies so far, and why it was premature to stop practicing safer =
sex.  The point is that indeed protease inhibitors have changed the lands=
cape of AIDS, but not always in predictable and expected ways. =

To Take Them or Not to Take Them, That is The Question
To start with, each individual must decide for him or herself whether the=
y should begin to take protease inhibitors.  At first glance it seems rid=
iculous to even consider not taking them.  One barrier to the use of prot=
ease inhibitors, and a very real concern that has to be explored is that =
once began, these drugs need to be taken for the rest of an individual's =
life in order to remain effective.  Additionally, they must be taken on a=
 very precise schedule that involves timing regarding when to eat and whe=
n to take other medications.  If protease inhibitors are not taken as pre=
scribed, drug resistance occurs.  For patients who may be uncomfortable t=
aking drugs, the need to take protease inhibitors forever will be a major=
 barrier.  What will happen as people do not take their protease inhibito=
rs exactly as prescribed?  They risk becoming drug resistant and medical =
providers will become increasingly frustrated with their noncompliance wi=
th the drug routine. For people who are not very organized or who are not=
 rigorously compliant with medication schedules, protease inhibitors may =
simply not be a manageable and viable treatment option.
=46rom its origins in Denver in 1983, the People With AIDS movement has c=
entered around self-empowerment for all people living with HIV/AIDS. A ke=
y component of self-empowerment is not to blindly trust one's health and =
well-being solely to any physician, even a well respected and trusted one=
=2E But rather to have a healthy degree of distrust that becomes translat=
ed into each patient educating him or herself about the illness and treat=
ment options, and then once educated, in partnership with the doctor, dec=
iding which treatments will be tried.
Historically, many people of color in the United States have a high level=
 of significant distrust of the white dominated, non Afro-Centric and non=
 Latino-Centric health care system.  Western medical care is underutilize=
d by people of color.  When people of color interact with western health =
care systems, their cultural values related to health, illness and help s=
eeking are often at variance with the values of the dominant system (Dalt=
on, 1991). In a recent article on African American women and AIDS the aut=
hors explain that the origins of this distrust lies rooted in the legacy =
of the Tuskeegee Syphilis experiments, where for forty years African Amer=
ican men were viewed as specimens in an experiment and not as valuable hu=
man beings. These men believed that they were enrolled in a treatment stu=
dy, when in reality they were denied treatment so that the effects of unt=
reated syphilis could be observed.  Trusting that they were being treated=
 for the disease, they unknowingly infected their wives and children. Giv=
en this historical context, it is understandable that African American PW=
As would be skeptical about the health care system. (Wright, Blackburn an=
d Taylor-Brown, 1996). The legacy of the Tuskeegee travesty of health car=
e understandably continues to exert a powerful influence on many African =
Americans regarding an unwillingness to trust the Establishment's existin=
g medical system.  Thus since the development of the earliest antiretrovi=
rals, many African Americans have not rushed to take these drugs since th=
ey were being touted and pushed by the establishment (white) providers. H=
ealth care professionals must not minimize these concerns or just assume =
that a reluctance to avail ones-self of these new drugs is inherently pat=
hological or indicative of emotional instability.
John, the man quoted at the beginning of this article went on to explain =
some of  what he experiences regarding his ambivalence about taking Prote=
ase Inhibitors.
"There's a big tug of war going on inside me," he explains. "Between the =
side that wants to live and the part that had already accepted that I was=
 going to die.  I had made peace with the probability that my life was go=
ing to be cut short.  Now, I don't want to get my hopes up again.  If the=
y can restore my health with a pill, that will be far easier than trying =
to restore my shattered life."
=0D
When Protease Inhibitors Work =

As John so eloquently expressed, even just the potential to suddenly have=
 a change of health and outlook can be profoundly disorienting to some pe=
ople. This is especially true if they have known they were HIV positive f=
or many years and had been living with the knowledge and accepted that th=
ey had a life threatening and very likely terminal illness.  I have talke=
d with many of my patients who are having attacks of anxiety, feelings of=
 unreality, depression, suspicion and anger in response to the improvemen=
t in their health.  Usually they are confused by these reactions and ofte=
n are ashamed to talk about them.  One of my clients explained this attit=
ude in the following way.
"It's a little like living on death row and getting a stay of execution. =
 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 awhile longer.  Who knows how much longe=
r?  Will I live to be an old queen?  Will the virus mutate sometime in th=
e future making the current treatments ineffective?  Obviously I don't kn=
ow.  I do know that instead of being overjoyed, I feel like I'm being jer=
ked around."
After finally deciding to begin taking the new drugs, and experiencing a =
remarkable drop in viral activity with a corresponding increase in his en=
ergy level, John, concurred when he told me: =

"It's hard to put these feelings into words. I feel like I am simply supp=
osed to be ecstatic that I am feeling better, and of course on some level=
 I am.  But this kind of about face brings up multiple emotional issues. =
 It's been impossible to say, 'Hooray, all of my problems have disappeare=
d.'"
Many individuals who are feeling better as a result of taking protease in=
hibitors feel guilty about their own good fortune as they think about the=
 friends, lovers, and children who have predeceased them for whom these n=
ew treatments arrived too late. Numerous patients who are benefitting fro=
m the new combination therapies have described feeling renewed loneliness=
 for the loved ones already lost to the plague. After starting protease i=
nhibitor therapy one man in my practice gained weight and once again beca=
me robust at the same time that his best friend died.  This juxtaposition=
 of events greatly unnerved him and took away from the euphoria he was fe=
eling about his own good luck.  A common question that I hear people grap=
pling with is "Why am I here to benefit from these treatments, when so ma=
ny others who I loved are already dead?"  I know that I sometimes find my=
self rather than just being thrilled that protease inhibitors are now her=
e, being angry that had they been available three years ago, perhaps my b=
eloved partner Lee might still be alive. =

Understanding that these drugs do not work for everyone has increased Joh=
n's sense of conflict over his own improving health.  =

"It feels somehow self-indulgent to be so caught up in relishing my own i=
mproving health," he explained during a recent therapy session.  "My best=
 friend has not been able to tolerate these drugs, and subsequently can n=
ot take them.  This causes me to ponder 'why should I be able to get away=
 with not having any side effects, when he was debilitated by them?' he s=
ays with more than a bit of bitterness. It really bothers me that Tony ca=
n't take them and I can.  In addition, with my knowing that they haven't =
been of help to him, I worry that what happened to him will eventually ha=
ppen to me."
Stabilized health as a result of the new treatments also has the potentia=
l to bring anxiety about financial matters.  Some people with AIDS, belie=
ving that they only had a short time to live, cashed in life insurance po=
licies, spent the money, applied for and got numerous credit cards and ra=
n these up to the limits, thinking that their estates would be left to de=
al with the resulting debts.  But now as these individuals are living lon=
ger they can not afford to manage their current debt load, and are extrem=
ely financially strapped.  Others worry about how long various entitlemen=
t programs will be able to continue to pay for their benefits.  =

 Currently I am working with two patients whose health has improved so mu=
ch that their physicians are questioning whether they can continue to jus=
tify a diagnosis of permanent disability? While thrilled that they are on=
ce again feeling really strong and healthy, they are frightened about the=
 prospect of returning to work.  People who believed that they were perma=
nently retired due to having AIDS, and who have not worked for several ye=
ars, have had no reason to keep up with current developments in their pro=
fessional fields.  They are worried about returning to work and not havin=
g the state of the art expertise required in order to be competent.  In a=
ddition there are realistic concerns about what will happen to their insu=
rance policies and other benefits if they do return to work.
When The Drugs Don't Work
In the January/ February issue of the GMHC Volunteer an article by Keith =
Christopher was subtitled "Feel poisoned by Protease Inhibitors? Don't Fe=
el Alone." Christopher posits "If protease inhibitors are extending your =
life but destroying the quality, there's a larger question to ask: At wha=
t price survival?" He chronicles how after a very brief period of benefit=
ting from the new drugs, he became overwhelmed by the side effects and to=
day is "no doubt sicker than I was before I began the new wonder drugs." =
 He is not alone in this experience.  When an individual is unable to tol=
erate the numerous side effects, or is resistant to the new drugs he or s=
he is understandably disappointed and often angry that these drugs did no=
t work for them. Juan is a man with AIDS who has been a patient of mine f=
or five years. He had to cease taking Crixivan because shortly after begi=
nning it he began to experience suicidal thoughts in addition to bodily t=
witching and other symptoms of central nervous system disorders.  On Norv=
ir, he suffered even worse reactions including hallucinations, severe nau=
sea, diarrhea and uncontrollable trembling.  The side effects of Delavrad=
ine were also debilitating and he had to cease taking it as well. He is c=
urrently hoping that new drugs come on to the market soon before it is to=
o late. =

"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 s=
imply not been my experience.  It's very lonely not being able to talk to=
 other people about what it's like hearing all the good news and feeling =
totally left out. Even in my AIDS support group no one seems to understan=
d how I feel," Juan laments.
I assure my patients who express any of the feelings described in this ar=
ticle that they are not alone in feeling the way they do.  All of these f=
eelings and the resulting uncertainties are completely understandable. Mo=
st people who are feeling better as a result of taking protease inhibitor=
s feel like they are holding their breaths in terms of not allowing thems=
elves to dare believe that their improvements will hold up in the long ru=
n. This uncertainty is not ill founded and creates a very potent anxiety.=
  It's very difficult to encourage people not to allow their dark thought=
s about "what ifs" to overpower them.  I remind them that we hope and wan=
t the benefits of all the new treatments to last for a long time.  But ev=
en if it is only for a year or two, I counsel  that their responsibility =
is to enjoy the improvements they are experiencing.  Most of my patients =
who have shown improvement on protease inhibitors are experiencing the pa=
radox of now dealing with issues they thought they would never again face=
, like work, how to deal with feeling better, socializing and even dating=
=2E  =

With greatly improved health thanks to the protease inhibitor "cocktails,=
" increasing numbers of people with AIDS find that they have the interest=
 in and energy for dating and relationships. =

"I knew that my body was really rebounding when I had an erection again, =
and then discovered that I could masturbate and even have an orgasm.  It =
had literally been more than two years since I had last cum.  I used to t=
hink for sure that my days of being sexual were forever gone," described =
Mike, as he proudly showed me muscles that were also beginning to reappea=
r.
Men and women who have been out of the realm of looking for dates, a rela=
tionship or sex due to being too ill are often shy about beginning to mee=
t people for romantic possibilities.  "I haven't flirted with a man in ov=
er two years, " confided Sabrina.  "I just hope that I haven't forgotten =
how, and that if things do take off  it will be like riding a bike, somet=
hing you never forget how to do," she said only half  joking. Facing thes=
e insecurities and dealing with them is a luxury problem that most people=
 I speak with admit to having anxieties and insecurities about, but which=
 they say they are happy to be in the position of facing.  An interesting=
 side note that may help people living with HIV/AIDS to feel a bit more o=
ptimistic in this area is that several HIV negative gay men I know have t=
old me that with the arrival of protease inhibitors they are more willing=
 to date and pursue a relationship with an infected individual since they=
 now have reason to believe that he will be around longer.
Conclusion
The AIDS plague is not over, and protease inhibitors have not even ushere=
d in the "twilight of the epidemic." They have become an additional and p=
owerful weapon in our arsenal of treatments for HIV/AIDS.  But they have =
not even come close to solving many of the problems routinely experienced=
 by people living with HIV/AIDS.  In fact, as this article demonstrates, =
the availability of protease inhibitors, while bringing hope and improved=
 health to many people, also brings new and additional issues and dilemma=
s that makes PWAs plates just a bit fuller than it previously was.  Never=
theless as with all other facets of this illness, only by speaking up, en=
ding the shame that accompanies silence, facing the uncertainties and amb=
iguities honestly, can each of us, provider and client, continue to refin=
e what it means to be self empowered as we all live with HIV/AIDS. =

References
Dalton, H. (1991). AIDS in blackface. In N. McKenzie (Ed.) The AIDS reade=
r, social, political and ethical issues. New York; Meridian.
Wright, E., Blackburn, E. & Taylor-Brown, S. (1996). African American wom=
en still remain invisible: Are social workers doing enough? Clinical cult=
ural competence issues. National Social Work AIDS Network Readings & Writ=
ings, V.1, N.3.
Michael Shernoff, MSW is a psychotherapist and author in Manhattan who is=
 also adjunct faculty at Hunter College Graduate School of Social Work.  =
He coedited (with Walt Odets The Second Decade of AIDS: A Mental health P=
ractice Handbook, and has just completed editing an anthology entitled Ga=
y Widowers Speak: Surviving the Death of a Partner to be published in 199=
8 by Harrington Park Press.   He can be reached via e mail at mshernoff@a=
ol.com or at his home page http://members.aol.com/therapysvc=

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