Summary: The advent of combination anti-retroviral therapies has ushered in a new phase of the
AIDS epidemic with resulting changes in the psychological and emotional complexities for
people living with HIV and AIDS. The medical uncertainties regarding whether, when and
which drugs to begin or stop is paralleled by a constellation of psychosocial issues that has left
both clients and mental health providers scrambling to adjust to the new world of HIV disease as
a chronic and manageable illness for most people living in developed countries. Paramount
among the emotional and psychological issues that need to be addressed are quality of life issues
and how these influence a person's medical decision making and other crucial life choices. This
article contains personal as well as professional reflections from the perspective of an
HIV-positive psychotherapist who has worked in the field of HIV/AIDS since the onset of the epidemic.
Key Words: HIV, AIDS, Combination therapy, medical decision making, quality of life,
counseling, psychotherapy
I recently turned fifty. When I found out I was HIV positive in the mid 1980s, this was not a
birthday I ever expected to celebrate. Having a confirmed exposure to HIV for over twenty five
years (1) and never having experienced one day of HIV related illness provides an additional
reason to rejoice at this milestone. For many years I was a member of the very small club of HIV
"long term survivors," or "long term slow progressors." Today increasing numbers of individuals
who live in developed countries where there is access to combination anti-retroviral therapy (2) are
swelling the ranks of this group of people living with HIV and AIDS.
This article is written from the perspective of one lucky enough to be living and working in a developed country where adherence to combination anti-HIV therapies and the corresponding issues pertaining to quality of life that are the focus of this article are important concerns. World-wide, the vast majority of people infected with HIV live in African or Asian countries where lack of access to medications is primary, and thus the potential to wrestle with the issues described in the rest of this paper remain an elusive luxury.
This article contains both personal and professional reflections about psychosocial issues facing people living with HIV and AIDS. Much has changed regarding the medical and mental health concerns facing people living with HIV and AIDS and the health care professionals serving them over the course of the epidemic. Between 1982 and 1996 prior to the availability of combination therapies, over 150 of my private psychotherapy patients died from AIDS related causes. There has not been a single death in my practice in over 6 years. For those who are having difficulty with their medication regimen, luckily not one has been critically ill with an AIDS related medical condition in more than 5 years. Thus the focus of psychotherapy has shifted from doing crisis intervention at each new stage of HIV progression including adjusting to continuous bodily deterioration and end of life issues to adapting to life in the age of multiple treatment choices. Several individuals with improved health with whom I am working describe being "cautiously or guardedly optimistic" and express a determination not to get too excited about the possibility of growing old because of all the potential obstacles and limitations that they still face as people living with HIV.
The overall impact of combination therapies has been overwhelmingly but not uniformly positive. "HIV is, and has always been a a chronic illness to the extent that it lasts years and, to date, cannot be cured. Describing HIV as a chronic illness implies that it is a less severe condition, a manageable if not altogether curable condition. It is essential to highlight that chronic is not the same as mild or unimportant."(Catalan et al, 2001) "It is true that there has always been a small proportion of HIV-positive individuals with a good prognosis, with few complications, and with minimal or, in the case of long-term non-progressors, no treatment. But the phenomenon of long term survivorship as open to many - as long as a person has access to treatment- is a new development."(Catalan, 1999) Since the mid-1990s there has been a significant decline in death rates from AIDS in the United States.(CDC, 1999) Due to the success of ADAP programs around the United States many uninsured individuals are living longer since an inability to afford tremendously expensive treatment regimens is not always a barrier to accessing the latest HIV medications. Yet people who are resistant to the existing antiretroviral drugs or who are unable to tolerate the myriad side effects still find their lives dominated by deteriorating health and trying to cope with a progressive and fatal illness. As Roberto, a client of mine, (the names of all clients quoted have been changed), so eloquently and painfully expressed: "I'm real pissed off and terrified that no matter which new drug I take, it has not been effective in fighting what ever strain of virus I have. It's real hard to feel like I am being completely left out of this latest miracle."
Combination therapies have brought numerous individuals back from the proverbial "brink of death," restoring many to a semblance of their earlier health and vitality, as well as reducing incidence of new HIV-related opportunistic infections and cancers.(Shernoff & Smith, 2000) So many seriously ill people with HIV disease have seen significant improvements in their health that HAART is described as producing a "Lazarus Syndrome," named for the biblical story about a man Jesus was said to have raised from the dead.(Shernoff & Smith, 2000) Because the advances in treatment have only been available for a relatively short time, no one can say for certain what the long term effects of these treatments will be. Continued use of antivirals may provide a window of opportunity for immune-boosting therapies and perhaps even restoration to normal immunological functioning. On the other hand, continued use of these powerful, toxic medications presents complicating factors of its own, notably damage to vital organs such as the liver, kidneys, pancreas and heart. The newness of the current antiretroviral therapies, and potential impact on a person's body is a prime source of the uncertainty that pervades the lives of people with HIV. Those of us who are now taking these new drug combinations are in fact
participating in what can only be described as the largest uncontrolled clinical trial in the history of medical science.
Taking medications as prescribed has long been recognized as problematic for nearly all types of conditions and treatments. Medication adherence is generally at its most challenging when the regimen is complex, intrusive, and of long duration, exact characteristics of the anti-HIV therapies. Adherence is also difficult when the treatment is for chronic conditions which are often asymptomatic, as opposed to acute, symptomatic conditions, again, the case for many people with HIV. In such cases, side effects are more apparent and compelling to individuals than the medication's hidden benefits, that is fighting an asymptomatic disease's underlying infection.
The prospect of long-term adherence to a complex regimen of combination therapy is disheartening and confusing. (For a detailed discussion of adherence issues see Linsk & Bonk, 2000). Nonetheless, the simple reality is that if an individual cannot adhere to the strict dosing schedule and food requirements, the therapy is destined to fail because of the growth of insufficiently suppressed viral strains. Similarly, adherent patients unable to absorb the drug, due to diarrhea or gastrointestinal problems (including those caused by the drugs themselves)-are also likely to find that treatment fails them. Diarrhea can flush out medications before they are fully absorbed into the body. Thus, in entering the age of combination therapies, we have entered the era of complex and uncertain resistance-based treatment choices.(Shernoff & Smith, 2000)
Social workers and all mental health providers need to be alert to the reality that the need to "coach" clients to approach and consult with their medical team regarding adhering to their medication schedules is not going to be a one-time phenomenon, and will need to be revisited repeatedly. Therapists might hear a client talk about being afraid to be honest with his or her MD about not taking the medications exactly as prescribed, for fear of being labeled a "bad patient." In situations like this, first probing the motivating factors for why the client is reluctant to be honest with the doctor and then doing some role playing and assertiveness training during counseling sessions can go far to prepare the client to be more authentic in the relationships he or she has with the other members of their health care team. Counselors can also be enormously helpful in helping individuals develop strategies for remaining adherent to difficult medication schedules, again by encouraging clients to be honest about their own limitations when faced with the potential to adjust their life styles in order to accommodate a medication that the physician is suggesting they begin.
From the onset of AIDS, social workers and other mental health professionals have played a critical role in providing emotional support for infected people by helping clients make sense of the ever-changing terrain of the epidemic, and learn how to adapt to the multiple uncertainties that all people living with any potentially fatal illness face. In order to continue to address these issues, therapists and counselors need to understand the issues that have accompanied the arrival of combination therapies. As John, a PLWA recently said during a therapy session: "For the ten years prior to triple combination therapy I had been living waiting to die. With combination therapy I had to do a 360-degree turn-around at a moment's notice." For those lucky enough to benefit from the new treatments, the life-prolonging benefits of combination therapy often provokes unexpected soul searching among individuals who had pretty much given up on life. Professional counseling and therapy still has an important role to play in the overall mental and emotional health of people living with HIV and AIDS whether a person is befitting from combination therapy or not. Yet, ironically, client after client has arrived in therapists' offices with feelings that ranged from anxiety to outright panic. As they have begun to contemplate continued life after preparing for death, some actually have asked: "What if I don't die?"
Christina, another PLWA illustrates the kinds of adjustments that many lucky enough to benefit from combination therapy are wrestling with. "My first year on combination therapy was focused on regaining my health. The second year was about allowing myself to slowly develop a cautious optimism that these treatments were going to benefit me on a long term basis. This third year has been about the challenges of improving my quality of life in terms of resuming my career and attempting to regain some kind of financial stability for the rest of my life, no matter how long that will be. For the first time since being diagnosed with AIDS I am allowing myself to dare to hope that I just might live long enough to raise my daughter and see her grow into becoming a woman." A skilled mental health professional can be a useful component of an individual's support system by initiating conversations about all of the feelings arising from each of these kinds of developments.
QUALITY OF LIFE PARADIGMS
Being diagnosed with any chronic and potentially life-threatening illness can be a powerful motivation to examine one's life and grapple with how to define what is meaningful. One of the most vague, and yet crucial, areas for such self-examination is determining how to evaluate and increase quality of life. As a long term HIV-positive non-progressor, this has certainly been true for me personally. Additionally, having worked with large numbers of psychotherapy clients who are living with HIV/AIDS, over the course of the epidemic I routinely initiated discussions aimed at helping individuals determine what factors contribute to a satisfactory quality of life. It is now routine for individuals experiencing a resurgence of health to explore whether or not to return to work, or seek to begin new love relationships or leave ones that they had remained in out of a perceived need to be taken care of due to their illness. Each of these situations were once unimaginable for a person with AIDS who was approaching his or her death.
The onset of combination therapies has greatly complicated the quality of life equation. Both personally and professionally, I have lived with and observed a radical change over the past 20 years in the way quality of life issues are framed. In the early days of the epidemic, the hopelessness of an AIDS diagnosis increased the urgency of the question: "How much am I willing to sacrifice quality of life just to extend my life?" Today in the age of combination therapies, questions about quality of life remain paramount. Marks (2000) noted: "As combination treatment extends life, some people with HIV may exchange a threat to life for insults to the quality of life, as the debilitating but sustainable symptoms of antiviral therapy undermine feelings of health." This author also wisely cautions that "both people living with HIV and providers may fail to recognize the fragility of improved spirit and may minimize, even yearn to minimize, the physical challenges of renewed health." Today, physical, emotional and interpersonal issues of renewed health form the core of quality of life concerns for all people with HIV, whether they are treatment naive, benefitting from combination therapy, or being bypassed by the so called "protease miracle." Taking these medications is not simply a matter of popping a few pills a few times a day. Rather, these drug regimens have a radiating effect, which profoundly influences eating, sleeping, and work schedules as well as day-to-day interactions with other people. All of these factors have an important bearing on a person's sense of well-being and confidence.
Many people responding positively to HAART say that their primary concern is financial security. While they could accept the prospect of living on a limited and fixed income so long as an early death seemed likely, this tolerance declined as their probable life spans lengthened. Cruelly, the fiscal resources of many long-term survivors have been depleted by their having previously opted to run their credit cards up to their limits, spend their life savings and viaticate their life insurance policies. These decisions, intended to improve their short-term quality of life, increase the fragility and vulnerability many long-term survivors and non-progressors now feel.
Perhaps the most noticeable change resulting from successful HIV treatment is a renewed capacity to participate fully in life. For some, this has meant a return to work, a change that has brought joy and fulfillment to many. For others, however, a range of psychosocial challenges, many of which can negatively impact a person's quality of life, lessens the excitement of returning to work. Some people find that a "clean slate" may be inspiring, but for most, having let go of the means and structure of a previous life becomes unsettling in the context of extended life. (Bettinger, 1999) "Some HIV positive individuals feel a self-imposed demand to undertake the superhuman efforts of holding a full time job while dealing with complex treatment regimens and side effects."(Catalan et al, 2001) Adding to this confusion is the uncertainty about whether health recovered by combination therapy will be permanent, and by the understandable fear that working may mean that disability income, benefits and other services will be lost forever. Trading off more free time for a work routine in order to earn more money can be a difficult emotional transition.
Additionally, people contemplating a return to work may experience a sense of failure and regret, a fear of having lagged too far behind to catch up, grief over lost dreams and opportunities, anger at themselves for not trying harder to overcome disability, and psychological paralysis. These feelings may be fed by the practical challenges of dealing with resumes that are no longer so impressive and professional skills that are no longer up-to-date. In addition, individuals re-entering the job market at the same level they had been at when they stopped working may now be competing for jobs with people who are younger than they are. (Bettinger, 1999)
The case of Eric, completely blind at age 23 as a result of AIDS-related CMV, offers a poignant illustration of how a sense of well being changes directly related to life expectancy. Successfully responding to HAART, he began once again to make plans, learning to walk independently with a seeing eye dog, joining a gym to regain weight, beginning a new relationship, and joining a support group for the visually impaired, where he became a role model for other group members. Despite these improvements, Eric stressed that his motivation to rebuild his life hinged on the thought that his time was limited. He has not made peace with the prospect of growing old as a blind man, feeling that this would entail an unacceptable quality of life.
Martin, a long-term non-progressor, says he feels that he has been balancing a level of what I label "supportive denial" about having a potentially life-threatening illness against the realities of medically managing the condition. He never stopped saving for his retirement or making long-term plans. To maintain his emotional equilibrium, he made significant psychological accommodations, learning to live with the paradox of absolute uncertainty. "Most of the time I allow myself to really believe that I do have a chronic, yet manageable health condition, --but one that could be fatal." Even with new treatments, Martin feels both blessed by his undetectable viral loads and anxious about how long he will retain his health. For him, quality of life is a balancing act, a matter of living fully in the moment while still planning for a future that is far from certain.
Different people have different priorities and these influence their quality of life concerns. For many, side effects may be perceived as the primary effects of the medications and in the short term may seem more serious than HIV infection itself. Side effects can be a valid reason to alter or stop the course of a medication regimen. Among the most common of these effects are a generalized toxicity with multiple manifestations occurring in up to 30 percent of patients, hypersensitivity reaction in up to 20 percent, and lipodystrophy (the redistribution of body fat from the extremities to the torso) in about 50 percent.(Carr & Cooper, 2000) They are significant when they limit mobility or otherwise prevent people from going about their normal routines. Even relatively minor side effects, such as flatulence and excessively dry skin and scalp caused by Crixivan (Indinavir) or loss of body hair sometimes caused by Epivir (3TC), impact how a person feels about himself by possibly impairing self-esteem and self-image. Lipodystrophy is the most visible of the side effects impacting a person's self image and self-esteem. Sometimes it results in an "elephant hump" on an individual's back, a paunch on his or middle, subcutaneous fat deposits that appear as visible lumps or a complete absence of fat in a person's cheeks or legs. Protease inhibitors are also associated with elevating cholesterol in the bloodstream, posing a risk for, and sometimes actually causing, heart attacks and strokes.(Carr & Cooper, 2000) All of these must be factored into the emotional cost of taking various drugs, and inquired about by the social worker or other clinician with whom the PLWHIV is working.
Both treatment success and failure have raised the bar regarding quality of life expectations for people with HIV/AIDS. An AIDS physician and activist in San Francisco writes, "Four years ago when people with HIV were relieved not to be dying or hospitalized, medication side effects were a welcome exchange for longer lives. Now as they extend over the long term, side effects have become less tolerable. Many people with HIV have unexpectedly tasted the possibility of normal lives, and are reacting to the limitations imposed upon them by diarrhea, peripheral neuropathy and fatigue."(Capaldini, 2000)
As Linsk and Bonk (2000) observe: "Helping people make decisions and follow through with their health care plans is actually old hat for social workers who work in health, mental health and family settings." When wrestling with treatment decisions, it can be helpful for a social worker or counselor to acknowledge that there are dilemmas which often pose trade-offs. It is also helpful for professionals to acknowledge the difficulty of achieving a viral load below the level of detection. Each individual needs to examine his or her feelings about what they might have to put up with in order to try to achieve this goal. Capaldini (2000) urges medical providers to "attend to a person"s symptoms and side effects even when, after applying quantitative criteria, treatment seems to be successful. The easiest mistake a medical care giver may make in the new era of HIV treatment is to falsely assume that improving viral load and CD4 cell readings translate into feelings of day-to-day well being."
Recently there has been discussion of the therapeutic effects of "structured treatment interruptions." In response to complaints from individuals experiencing severe side effects, some physicians are experimenting with intermittent therapy schedules. Although still under study, this new approach may be welcome news for people on antiviral drug regimens, holding out the prospect of periodic relief from potentially debilitating side effects. This kind of collaborative and flexible relationship with one's physician can result in improving people's emotional states even while creating an additional potent anxiety related to all of the attending medical uncertainties.
In the end, it is each individual who sets their own quality of life agenda, always in light of the existing medical and psychosocial options. For anyone to reach informed decisions about which treatment to try, each person will need help in the form of treatment education and information. Some people are comfortable evaluating the existing medical options and their subsequent physical and emotional consequences on their own or through conversations with friends, family members or peers. Others benefit from professional counseling to sort through all the information and accompanying feelings. However, only after an individual has accepted his or her own responsibility for their role in the decision-making process, can social workers and other health-care professionals provide them with the necessary guidance. This way, each person living with HIV and the members of his or her health care team can strive together towards insuring that quality of life goals are always a priority.
The complexity of the uncertainty that individuals doing well on combination therapy constantly live with is illustrated by a man who reports that "treatment has been a process of sustaining a body that will never be well, but may very well continue to be."(Goldman, 2001) People with HIV/AIDS routinely have to make important decisions about treatment - whether or not to begin HAART, when to do so, whether to change treatments in response to an increase in viral load or intolerable side effects, and, in some cases, whether or not to stop combination therapy altogether. "Before initiating a regimen of these drugs, our clients must carefully consider whether they can make an ongoing commitment to adhere absolutely and permanently to the prescribed regimen. The decision to begin anti-retroviral therapy must be carefully made in partnership with a physician and other health providers, and helping work through this decision can be a major social work contribution."(Linsk & Bonk, 2000)
It might seem ridiculous for an individual to even consider not initiating combination therapy, given its life-extending potential. But there is plenty of reason for uncertainty, especially for individuals who are treatment naive since there is considerable disagreement about the best time to begin therapy. Uncertainty is a constant issue and dynamic for all people with HIV and AIDS, and a potential source of anxiety and or depression. Uncertainty is heightened and very potent for individuals who are contemplating beginning or stopping HAART.
HIV medicine is such a new branch of medicine and evolving so quickly that it is understandable that people with HIV and AIDS live with and must learn how to manage and adapt to their feelings around not being certain what is the absolutely best way to proceed regarding medications. This is where skilled mental health intervention can play an important role in attempting to maximize a person's emotional and psychological equilibrium. One concrete thing that therapists can do is to normalize the anxiety experienced by people who are constantly faced with an array of medical decisions for which there is no one clear cut "best" response. It is also essential for therapists to do a careful assessment of an individual's psychological history in terms of a prior history of anxiety disorders or depression that are only exacerbated by all of the choices facing a person with HIV or AIDS. It is necessary that social workers and other psychotherapists who are not psychiatrists know when it is appropriate to refer an individual experiencing intense anxiety or depression to a psychopharmacologist expert in working with people with HIV/AIDS for an evaluation regarding psychotropic medications.
A recent illustration of how the rapidly shifting state of AIDS medical care fertilizes the field of uncertainty regarding treatment choices is the change in treatment guidelines that was issued by the US Public Health Service in terms of when to start antiretroviral therapy. By the start of 1997, combination therapy had become the standard of care for HIV-infected individuals who had begun to exhibit signs of significant immunosuppression, although no clear cut consensus had emerged about the best time to initiate therapy. Thus "Hit it Hard and Hit it Early," became the treatment standard for many who choose to begin HAART. Until February 2001, The Federal guidelines, issued by the US Public Health Service, Department of Health and Human Services suggested that HAART should be offered to people whose CD-4 cells were below 500 or viral load was above 10,000 bDNA or 20,000 PCR. (USPHS, 1997)
The above mentioned guidelines were revised in February of 2001 and were published to coincide with the 8th Conference on Retroviruses & Opportunistic Infections, held in Chicago in February, 2001, though these guidelines were not presented at the conference. The newly revised guidelines state "therapeutic decisions require a mutual understanding between the patient and the health care provider regarding the benefits and risks of treatment." The new guidelines suggest that treatment be offered when an individual's CD-4 cells are below 350 or Viral load is above 30,000 bDNA or 55,000 PCR. (USPHS, 2001)
Comparing the benefits and risks of delaying antiretroviral therapy as opposed to starting treatment early demonstrates the kinds of "Gordian Knot" individuals needing to make choices about whether and when to begin antiretroviral therapy face. The ever and rapidly changing field of AIDS care has the understandable potential to increase a person's anxiety about "what is THE right choice."
The changes in these guidelines have had a profound impact on many people with HIV. People
who chose to remain treatment naive. They felt vindicated in their decision to hold off jumping
on the "hit it hard, hit it early" treatment bandwagon. Many individuals who began combination
therapy and have either not benefitted from the therapy or been overwhelmed with side effects,
may feel confused and/or angry at having been urged to begin treatment. Social workers and
other mental health professionals have an important role to play in helping people evaluate
whether or not they feel ready and able to begin the arduous routine of HAART. Presenting the
above information and exploring a person's feelings about the various options and possible results
of choosing to begin or wait to commence treatment can help the person understand his or her
options and feel comfortable with whatever decision they make. Table one, developed by The
Community Research Initiative on AIDS in New York City, succinctly summarizes the risks and
benefits of starting combination therapy early or delaying treatment.
Table 1
Benefits
Risks
Benefits
Risks
Developed by Community Research Initiative on AIDS, 2001, and reproduced with permission.
Difficulties arise with these guidelines when doctors and individuals do not view then for what they are - - merely guidelines, a tool for evaluating when to begin treatment. The guidelines include recommendations, suggestions and information. They are not a "one size fits all" formula for treatment. They are guidelines, not rules! Danger lies in a medical professional or patient looking at the tables and charts without understanding the individual flexibility called for within the text. (CRIA, 2001) The ambiguities within these guidelines parallel the ambiguities regarding the level of risk regarding oral sex in transmitting HIV. Many gay men repeatedly seek assurances from doctors and AIDS prevention specialists that they can engage in oral sex with absolute safety, an assurance that no responsible professional can or should provide.
If an individual decides to begin combination therapy, he or she must determine which combination will be right for them. Therapists and counselors can be helpful in urging a person considering combination therapy to make a list of life priorities and how these might be affected by various medications. For example, if spontaneous socializing around meals is something an individual cherishes, he or she may not want to take drugs that require precise scheduling of medication and meals. Juggling medication schedules and meal times can make a person feel trapped. If a person is very athletic or travels a lot for business, he or she may opt not to try medications that may cause diarrhea. Individuals need to consider the possible negatives, such as the potential indignity of soiling themselves, of needing to stay close to a bathroom, or the need to take anti-diarrheal medication. If a person works at home with ready access to a bathroom, diarrhea may not be as big a concern.
Although it should be widely understood that antiviral medications are not a "cure," the all or nothing thinking implicit in the concept of "cure" continues to influence the way in which outcomes of HAART are discussed. Indeed it is common to hear falsely dichotomized discussion of "treatment successes" and "treatment failures." However it is important for health care professionals to remind people living with HIV to recognize that treatment outcomes actually represent a continuum. Indeed, no treatment has so far ever succeeded completely, in the sense of achieving eradication of HIV. Likewise, there is a growing body of evidence that even those whose viral suppression is incomplete or short lived may see benefits in a weakening of HIV and a strengthening of the immune system from being on combination therapy.
Social workers and other professionals need to encourage clients to try and think in terms of a spectrum extending from the achievement of a level of viral replication that is beneath the detectable level, including symptom reduction but incomplete viral suppression, to a high level of viral activity and continued CD4+ cell depletion. Such an approach speaks to the reality that a number of people with HIV have not only survived, but thrived, on combination therapy for more than three years, requiring reevaluation of the old HIV disease model of infection --latency --sickness --death. Whether or not any particular patient will benefit from combination therapy cannot be predicted, and some whose therapy at first succeeds later experience the emergence of resistant strains of HIV. As Rose notes this situation breeds both hope and uncertainty, and each individual faces a different prognosis and challenge.(1998)
Thomas, a 50-year-old psychotherapy client living in Manhattan, illustrates this point. "Combination therapy has not made my viral load undetectable, but it has still been a godsend, and I am not complaining, despite the side effects. The few KS legions I used to have are now gone, and my CMV retinitis has not gotten any worse. Prior to beginning these drugs I would also become confused at times, which my physician assumed was a neuropsychiatric complication of HIV. This symptom is also a thing of the past. I feel like I have regained my life."
Suddenly having a change of health and outlook can be profoundly disorienting, and elicit a wide range of emotional reactions. This is especially true for clients who have known they were seropositive for many years and had accepted that they were almost certainly going to die. John, a person with AIDS who has been a psychotherapy patient for fifteen years explained some of his initial ambivalence about taking combination therapy: "I had two friends who died despite being on combination therapy. I have had so many ups and downs over the years with the promise of new treatments that initially it was difficult to muster up excitement for these new drugs. For the five years before initiating HAART I had been living my life planning and expecting to die. Now I am faced with needing to learn to believe that I have the potential to rebuild my life, jump start my career and no longer feel like a prematurely aged man. 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. This often seems like a bigger leap than I have the energy for."
People living with a potentially terminal illness often feel burdened by the societal construct that the extension of life -at any cost- is the only or best option. Medical and mental health professionals can help people who question this belief by providing support for alternative views, including those that center on the life priorities and capacities of the individual. Such conversations can help people assert control over their lives, turning the burden of decision making into a life-affirming and empowering challenge.
For most people the difficulties associated with taking HAART are a source of confusion and stress. People with HIV often experience anxiety when they are awaiting the results of laboratory results. Mental health and medical professionals all need to downplay the importance of the numbers from viral loads or CD-4 cell counts which too often have a negative psychological effect. Because the new treatments do not work for everyone, it is important that social workers and all mental health workers help clients modulate their expectations and hopes for a dramatic improvement in their health. While it is often emotionally less draining to work with people who are experiencing a renewal of health, energy and hope than with those for whom combination therapy is not effective, counselors and therapists have to be prepared to help clients who are not benefitting from current therapies. When an individual has not benefitted from the multiple combinations now available, any combination he or she is next offered is sometimes
referred to as "salvage therapy," a term that itself connotates the hopelessness or despair that the individual is most likely already feeling.
It is useful for therapists to remind clients who are not doing well on HAART that it is the therapy that has failed them, (as opposed to the too often used medical language that "it is the patient who failed the drug or regimen). Helping "reframe" the perspective of such clients who are not seeing the desired benefits of the new drug regimens from one of having failed to having been failed is important, but may be complicated if an individual has not been as adherent as prescribed. When clients feel that it is they who have failed, this is often because the client has in fact not adhered to the required dosing schedule. Nonetheless, one therapeutic intervention is for therapists to reframe the inability to adhere as the shortcoming of the medications rather than the shortcoming of the individual. It is useful for therapists to keep in mind that it is hard to be perfectly adherent. Patients may blame their treatment failure on slight deviations from their regimen and feel guilty or "beat themselves up" for every minor infraction. In addition, counselors should be alert to clients who become so hypervigilant and compulsive in following their drug-taking regimen that it is interfering with the rest of their lives. Social workers and other mental health professionals can be helpful to people who have not been able to achieve complete viral suppression by working with them to redefine this from a "treatment failure" to a situation of "progress but not perfection."
Health care professionals must work both with clients and within the larger system of HIV care to advocate for access to available treatments for every person with HIV who wants them. In addition, clinicians need to become and remain knowledgeable about new treatment information as it becomes available. Mental health professionals of all disciplines need to merge the traditional roles of psychotherapy with counseling and social case work in order to assist clients in maintaining social supports as they adjust to new medications, renewed health, life-long adherence to treatment regimens, and the possibility that medications may have limited efficacy. These same integrated mental health skills are urgently needed to help those people who either cannot tolerate the new treatments or for whom they have not been successful.
"HIV infection, always having been a chronic disorder, has in the last few years shown a changing pattern of disease with improved outcomes (longer survival, possibly more disease-free periods, the chance to normalize life). But, longer survival, has also meant more time for more adverse consequences to develop, some of them resulting from treatment itself."(Catalan et al, 2001). For example, clients who regain their health may feel overwhelmed by other problems in their lives, such as addictions or unsatisfying relationships that may have been submerged by HIV disease. Some who regain a sex drive may face a broadening horizon of intimate relationships, an exhilarating prospect that may also bring complications including the possibility of engaging in sexual behaviors that can either spread the virus or expose clients to other sexually transmitted diseases or drug resistant strains of HIV.
The future remains filled with uncertainties for people on combination therapy: How long will the drugs continue to be effective? What are the long term side effects of these drugs? As people on combination therapy live longer, age, and develop medical conditions related to aging, as opposed to HIV, no one can say how these medications prescribed to treat other medical problems will interact with HIV-related treatments.
While it is impossible to foresee the future, some speculations about what might be in store for people with HIV may be useful. Physicians are already seeing patients on HAART whose viral loads have risen from below levels of detection, though their immune systems and general health remain good. While low levels of virus (1,000 to 4,000 parts per milliliter) were at first thought to possibly indicate treatment failure, persistent low levels of virus may be sustainable and safe. (Starrett, 2000) This is only the most recent example of anxiety-provoking realities dogging people taking combination therapies that accompanies rapidly-changing understanding of HIV disease and treatment. Similarly, if large numbers of patients begin to fail on new treatment regimens, it is not inconceivable that there may be a return to the physical and psychological crisis of the early epidemic.
The AIDS epidemic is not over, and combination therapy has not ushered in the "twilight of the epidemic." It has become an additional and powerful weapon in our arsenal of treatments. But they have not even come close to solving many of the problems routinely experienced by people living with HIV disease. While bringing hope and improved health to many people, combination therapy raises new dilemmas, adding to the many issues that people with HIV already face. Social workers and all mental health providers have the opportunity to help their clients acknowledge both the hope and the doubt involved in living with HIV--even in the context of successful treatment. Speaking up and contradicting the shame that accompanies silence is the surest way to recognize and confront the uncertainty and ambiguity. Therapists of all disciplines have many important roles to play in the era of combination anti-HIV therapies not the least of which is urging clients to understand and give voice to all of the myriad feelings they experience in this phase of living with or perhaps even dying from HIV disease.
References
Bettinger, M. (1999). Intrapsychic and Systemic Issues Around Returning to Work For People
Living With HIV/AIDS. In M Shernoff (Ed.) AIDS and Mental Health Practice; Clinical and
Policy Issues. Binghamton, NY: Haworth Press, (pp 19-42).0
Capaldini, L. (2000) Responding to HIV Treatment Side Effects and Residual Symptoms. FOCUS: A Guide to AIDS Research and Counseling. V. 15, No 10 University of California San Francisco AIDS Health Project, (pp1-4).
Carr, A & Cooper, D. (2000). Adverse effects of antiretroviral therapy. The Lancet. 356(9239), (pp. 1423-1430).
Catalan, J. (1999). Psychological problems in people with HIV infection, In Catalan, J (Ed.)
Mental Health and HIV Infection. London: University College/London Press (pp 21-41).
Catalan, J., Green, L. & Thorley, F. (2001) The changing picture of HIV: A Chronic illness,
Again? FOCUS: A Guide to AIDS Research and Counseling. V. 16, No 3 University of
California San Francisco AIDS Health Project, (pp1-4)
Centers for Disease Control and Prevention, HIV/AIDS Surveillance Report 1999, 11(1), (pp
32-37).
Community Research Initiative on AIDS (March, 2001) HIV Treatment Education Training
Manual, New York: CRIA, (p.29).
Goldman, S. (2001) Being chronically ill. FOCUS: A Guide to AIDS Research and Counseling.
V. 15, No 10 University of California San Francisco AIDS Health Project, (pp 5-6).
Linsk, N. & Bonk, N. (2000). Adherence to Treatment as Social Work Challenges. In Lynch, V
(Ed.), HIV/AIDS at year 2000: A Sourcebook for Social Workers. Boston, Allyn & Bacon, (pp.
211-227.
Marks, R. (2000) Editorial: Symptoms of Living With HIV. FOCUS: A Guide to AIDS Research
and Counseling. V. 15, No 10 University of California San Francisco AIDS Health Project, (p.
2).
Rose, A. (1998) HIV over the Long Haul: Hope, Uncertainty, Grief & Survival. In The UCSF
AIDS Health Project Guide to Counseling: Perspectives on Psychotherapy, Prevention and
Therapeutic Practice. San Francisco, Jossey-Bass, (pp 197-208).
Shernoff, M & Smith R. (2000) HIV Treatment: Mental Health Aspects of Antiviral Therapy.
UCSF AIDS Health Project, Monograph Series Number 4. San Francisco: University of
California San Francisco AIDS Health Project.
Starrett, B. (December, 2000) Personal communication with the author.
United States Department of Health and Human Services. (1997) Guidelines for the Use of
AntiRetroviral Agents in HIV-Infected Adults and Adolescents.
United States Department of Health and Human Services. (February 5, 2001) Guidelines for the
Use of AntiRetroviral Agents in HIV-Infected Adults and Adolescents.
NOTES
1. I know that I have been exposed to HIV since 1976 because in that year I participated in a New York Blood Center Hepatitis B vaccine research study during which blood samples of all the participants were frozen and retrospectively tested for HIV antibodies once the HIV antibody test became available in the mid 1980s.
2. Combination therapy, also known as HAART (Highly Active Antiretroviral Therapy) consists of three or more drugs, at least one of which is a Protease Inhibitor. Both terms will be used interchangeably throughout this article.