From: MShernoff@aol.com Date: Tue, 4 Feb 1997 12:22:25 -0500 (EST) Subject: protease inhibitor article 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= --PART.BOUNDARY.0.13521.emout18.mail.aol.com.855073851--