“I’ve been living for the past ten years waiting to die. Now with protease 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 Twilight of an Epidemic.” This overly optimistic title reflects part of the tensions that exist surrounding the newest class of antiretroviral drugs known as protease inhibitors. For the first time since the onset of the AIDS 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 the epidemic” gives false hope and is misleading. For one thing there is no clinical evidence about how long these drugs will prove to be effective, 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 since it began. I have worked with hundreds of individuals with HIV both as a professional and as a volunteer. Additionally, I myself am infected with HIV and am what has been labeled a “nonprogressor,” meaning so far I have remained asymptomatic after a confirmed exposure to HIV for over twenty years. (Blood I donated as part of the New York Blood Center’s pioneering study of Hepatitis B in the mid 1970s was frozen, and after the development of the HIV antibody test proved positive for the antibodies to HIV type 1.) Thus issues relating to protease inhibitors are personally relevant 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 reactions 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 include protease inhibitors.
During and after the Vancouver AIDS conference last summer, the mainstream 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 reports 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 medicines, AIDS was at last a treatable illness, and so they could résumé high risk sexual activities. They were not only disappointed but skeptical of my explanations of what these drugs seemed able to do in the preliminary studies so far, and why it was premature to stop practicing safer sex. The point is that indeed protease inhibitors have changed the landscape 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 they should begin to take protease inhibitors. At first glance it seems ridiculous to even consider not taking them. One barrier to the use of protease 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 when to take other medications. If protease inhibitors are not taken as prescribed, drug resistance occurs. For patients who may be uncomfortable taking drugs, the need to take protease inhibitors forever will be a major barrier. What will happen as people do not take their protease inhibitors exactly as prescribed? They risk becoming drug resistant and medical providers will become increasingly frustrated with their noncompliance with 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.
From its origins in Denver in 1983, the People With AIDS movement has centered around self-empowerment for all people living with HIV/AIDS. A key 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. But rather to have a healthy degree of distrust that becomes translated into each patient educating him or herself about the illness and treatment options, and then once educated, in partnership with the doctor, deciding 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 underutilized by people of color. When people of color interact with western health care systems, their cultural values related to health, illness and help seeking are often at variance with the values of the dominant system (Dalton, 1991). In a recent article on African American women and AIDS the authors explain that the origins of this distrust lies rooted in the legacy of the Tuskeegee Syphilis experiments, where for forty years African American men were viewed as specimens in an experiment and not as valuable human beings. These men believed that they were enrolled in a treatment study, when in reality they were denied treatment so that the effects of untreated syphilis could be observed. Trusting that they were being treated for the disease, they unknowingly infected their wives and children. Given this historical context, it is understandable that African American PWAs would be skeptical about the health care system. (Wright, Blackburn and Taylor-Brown, 1996). The legacy of the Tuskeegee travesty of health care understandably continues to exert a powerful influence on many African Americans regarding an unwillingness to trust the Establishment’s existing medical system. Thus since the development of the earliest antiretrovirals, many African Americans have not rushed to take these drugs since they were being touted and pushed by the establishment (white) providers. Health care professionals must not minimize these concerns or just assume that a reluctance to avail ones-self of these new drugs is inherently pathological 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 Protease 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 going to be cut short. Now, I don’t want to get my hopes up again. If they can restore my health with a pill, that will be far easier than trying to restore my shattered life.”
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 people. This is especially true if they have known they were HIV positive for many years and had been living with the knowledge and accepted that they had a life threatening and very likely terminal illness. I have talked with many of my patients who are having attacks of anxiety, feelings 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. One of my clients explained this attitude 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 longer? 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.”
After finally deciding to begin taking the new drugs, and experiencing a remarkable drop in viral activity with a corresponding increase in his energy level, John, concurred when he told me:
“It’s hard to put these feelings into words. I feel like I am simply supposed 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 disappeared.'”
Many individuals who are feeling better as a result of taking protease inhibitors feel guilty about their own good fortune as they think about the friends, lovers, and children who have predeceased them for whom these new treatments arrived too late. Numerous patients who are benefitting from the new combination therapies have described feeling renewed loneliness for the loved ones already lost to the plague. After starting protease inhibitor therapy one man in my practice gained weight and once again became 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 feeling about his own good luck. A common question that I hear people grappling with is “Why am I here to benefit from these treatments, when so many others who I loved are already dead?” I know that I sometimes find myself rather than just being thrilled that protease inhibitors are now here, being angry that had they been available three years ago, perhaps my beloved partner Lee might still be alive.
Understanding that these drugs do not work for everyone has increased John’s sense of conflict over his own improving health.
“It feels somehow self-indulgent to be so caught up in relishing my own improving health,” he explained during a recent therapy session. “My best friend has not been able to tolerate these drugs, and subsequently can not 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 says with more than a bit of bitterness. It really bothers me that Tony can’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 happen to me.”
Stabilized health as a result of the new treatments also has the potential to bring anxiety about financial matters. Some people with AIDS, believing that they only had a short time to live, cashed in life insurance policies, spent the money, applied for and got numerous credit cards and ran these up to the limits, thinking that their estates would be left to deal with the resulting debts. But now as these individuals are living longer they can not afford to manage their current debt load, and are extremely financially strapped. Others worry about how long various entitlement programs will be able to continue to pay for their benefits.
Currently I am working with two patients whose health has improved so much that their physicians are questioning whether they can continue to justify a diagnosis of permanent disability? While thrilled that they are once again feeling really strong and healthy, they are frightened about the prospect of returning to work. People who believed that they were permanently retired due to having AIDS, and who have not worked for several years, have had no reason to keep up with current developments in their professional fields. They are worried about returning to work and not having the state of the art expertise required in order to be competent. In addition there are realistic concerns about what will happen to their insurance 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 Feel Alone.” Christopher posits “If protease inhibitors are extending your life but destroying the quality, there’s a larger question to ask: At what price survival?” He chronicles how after a very brief period of benefitting from the new drugs, he became overwhelmed by the side effects and today 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 tolerate the numerous side effects, or is resistant to the new drugs he or she is understandably disappointed and often angry that these drugs did not work for them. Juan is a man with AIDS who has been a patient of mine for five years. He had to cease taking Crixivan because shortly after beginning it he began to experience suicidal thoughts in addition to bodily twitching and other symptoms of central nervous system disorders. On Norvir, he suffered even worse reactions including hallucinations, severe nausea, diarrhea and uncontrollable trembling. The side effects of Delavradine were also debilitating and he had to cease taking it as well. He is currently hoping that new drugs come on to the market soon before it is too late.
“I don’t like to whine, but it is really difficult hearing all the good news, and how these drugs have heralded the end of the plague. That has simply 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 understand how I feel,” Juan laments.
I assure my patients who express any of the feelings described in this article that they are not alone in feeling the way they do. All of these feelings and the resulting uncertainties are completely understandable. Most people who are feeling better as a result of taking protease inhibitors feel like they are holding their breaths in terms of not allowing themselves to dare believe that their improvements will hold up in the long run. This uncertainty is not ill founded and creates a very potent anxiety. It’s very difficult to encourage people not to allow their dark thoughts about “what ifs” to overpower them. I remind them that we hope and want the benefits of all the new treatments to last for a long time. But even 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 paradox of now dealing with issues they thought they would never again face, like work, how to deal with feeling better, socializing and even dating.
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 think for sure that my days of being sexual were forever gone,” described Mike, as he proudly showed me muscles that were also beginning to reappear.
Men and women who have been out of the realm of looking for dates, a relationship or sex due to being too ill are often shy about beginning to meet people for romantic possibilities. “I haven’t flirted with a man in over 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, something you never forget how to do,” she said only half joking. Facing these 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 optimistic in this area is that several HIV negative gay men I know have told 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.
The AIDS plague is not over, and protease inhibitors have not even ushered in the “twilight of the epidemic.” They have become an additional and powerful 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 dilemmas that makes PWAs plates just a bit fuller than it previously was. Nevertheless as with all other facets of this illness, only by speaking up, ending the shame that accompanies silence, facing the uncertainties and ambiguities honestly, can each of us, provider and client, continue to refine what it means to be self empowered as we all live with HIV/AIDS.
Dalton, H. (1991). AIDS in blackface. In N. McKenzie (Ed.) The AIDS reader, social, political and ethical issues. New York; Meridian.
Wright, E., Blackburn, E. & Taylor-Brown, S. (1996). African American women still remain invisible: Are social workers doing enough? Clinical cultural competence issues. National Social Work AIDS Network Readings & Writings, V.1, N.3.
Category: AIDS/HIV Articles