The advent of the new class of anti-retroviral drugs known as protease inhibitors has revolutionized care for people living with HIV and AIDS (PWAs). The four protease inhibitors that have been approved by the FDA are Indinavir (brand name Crixivan), Saquinavir Mesylate (brand name Invirase), Ritonavir (brand name Norvir), and Nelfinavir (brand name Viracept). Reports at the International AIDS conference held in Vancouver, Canada in June, 1996 documented that a regimen of therapy with one or more of these new drugs in combination with two of the older class of anti-retroviral drugs known as Nucleoside Analogues that include Zidovudine (AZT), Didanosine (DDI), Zalcitabine (DDC), Stavudine (D4T) and Lamivudine (3TC), can significantly reduce the amount of HIV to undetectable levels in the blood stream and result in patients feeling better, having improved quality of life and ultimately living longer (James, 1996, Waldholz, 1996, Markowitz, 1996).
"For the first time in the epidemic, there has been a marked decrease in deaths among people with AIDS. During the first 2 quarters of 1996, the estimated number of AIDS deaths (22,000) was 12% less than the estimated number of AIDS deaths during the first two quarters of 1995, AIDS deaths declined in all four regions of the United States" (Centers for Disease Control, 1997, p.2). This decline has been associated with many biomedical advances, including the FDA approval and practitioners use of anti-retroviral drugs. Protease inhibitors used in combination therapies have brought numerous individuals back from the brink of death, sharply reduced and in some cases eliminated any detectable levels of virus from the blood of thousands of others. "It's emotionally satisfying to test undetectable, but we have no idea what that really means," said Sally Cooper, executive director of the PWA Health Group, an organization in Manhattan that provides treatment information to people with HIV(New York Times, February 2, 1997, section 13, p.12). "I'm excited by these drugs, but at the same time, I'm terrified by them, she explained." Protease inhibitors have changed the landscape of AIDS, but not always in predictable and expected ways. In order to work effectively in this field social workers need to be educated about the issues that have accompanied the arrival of protease inhibitors and the combination "cocktail" therapies of which they form one crucial component. All therapists and counselors have a prominent role to play in assuring that their clients are knowledgeable about the medications they are considering, the limitations of their effect and the implications for choosing or not choosing to use them. Social workers in particular can and must work with client groups to translate many of the complicated issues surrounding the arrival of these biomedical break throughs into useful components that may be readily incorporated by and into the lives of the clients with which we work.
Mental Health Practice and Protease Inhibitors
Therapists practicing in settings with people with HIV and AIDS need to become well informed about these new developments in order to assume the traditional variety of social work roles to best assist clients who are faced with the issues surrounding this new therapy. This is no simple task. Biomedical advances, as underscored by the rapid introduction of new medications and our emerging understanding of the effects of these drugs, are constantly being refined and up-dated. Beyond the traditional roles of discharge planning and the provision of acute care services, hospital social workers and psychologists must incorporate goals of health promotion, health maintenance and a participatory relationship in the treatment process (Berkman, 1996). It is especially crucial that workers seeking to be of assistance to clients with HIV/AIDS work with the person in his or her system. In the case of people with HIV/AIDS the client's system may include any or all of the following: family of origin; children, legal spouse; common law spouse; same sex partner; friends; religious institutions; staff of community based AIDS service organizations; and primary medical providers.
Germain (1981) and Gitterman and Germain (1976) discuss social work practice in terms of understanding and being able to intervene on both the ecological (or environmental) level as well as with the individual client and his or her immediate system. Their perspective is easily generalized to all the other mental health professions. Germain (1980) explains that "ecology seeks to understand the transactions that take place between environments and living systems and the consequence of these transactions for each." She then goes on to elaborate on how an ecological perspective is a useful lens through which to examine the social context of clinical social work, and all psychotherapy. Application of the ecological perspective is essential for workers to incorporate into their clinical work with clients. This inclusion is particularly true for work with historically marginalized populations like racial, ethnic or sexual minorities, as information and resources have not always reached these groups equitably. It is only through utilizing this broad systems perspective that a worker will be able to understand and correctly reflect back to the client how the biases and assumptions of the mainstream culture have impacted upon them, and contributed to their unique psychodynamic and psychosocial realities. We will demonstrate how using this ecological approach informs the translational role in order to be of assistance to clients around medical decision making as it applies to protease inhibitors.
Mental Health Workers Translational RolesAn article published in the New York Times Magazine entitled "When Plagues End: Notes on the Twilight of an Epidemic"(Sullivan, 1996) reflects some of the tensions that exist surrounding protease inhibitors. There is finally a reason to have hope that HIV disease may become a chronic and manageable illness for those individuals who can manage to comply with the rigorous demands of dosage, and who can tolerate a variety of difficult side-effects of the combination therapies. Yet to proclaim that we are entering the "twilight of the epidemic" is overly optimistic, gives false hope and is misleading. For one thing there is neither clinical evidence about how long these drugs will prove to be effective, nor proof that they work for every person living with HIV and AIDS.
Protease inhibitors (saquinavir, ritonavir, indinavir and Nelfinavir) are among the newest anti-retroviral weapons in the biomedical arsenal to combat HIV disease. These drugs operate to confuse the virus in its destructive replication pathway. Other classes of anti-retrovirals include the non-nucleoside reverse transcriptase inhibitors (nevirapine) and the nucloeside analogs (AZT, 3TC, ddI, ddC and D4T) (Overall Treatment Strategy, 1996). While a complete discussion of the mechanisms by which these drugs operate is beyond the scope of this paper, it is clear that a basic knowledge of these drugs and their effects and limitations is important for all professionals to provide optimal client support.
The protease inhibitors are very difficult drugs to take for a variety of reasons. They must be taken on exact schedules without any doses being missed. Three of them (Saquinavir, Ritonavir and Viracept) must be taken with food. While a third (Crixivan) must be taken either two hours after eating or one hour prior to eating in order to assure the best level of absorption. If an individual is concurrently taking DDI which also has to be taken either two hours after eating or one hour before eating, but can not be taken at the same time as Crixivan, the scheduling of drug taking becomes a night-mare. When the fact that most PWAs have an extensive regiment of other drugs they must take as well is taken into account, the complexities of medication compliance is further compounded.
"I was an attorney before I went out on medical disability," explained Bob, a client
in private psychotherapy with one of the authors. "Managing my medical care and
prescriptions, and monitoring when and how each needs to be taken has become
my full time job. I've put it all on my computer. There is simply no way else I could keep track of it all."
As the above quote illustrates, even the most sophisticated consumer of medical care, who has the capacity to organize his or her own life finds managing the required scheduling of anti-HIV drugs a daunting task. Thus a single parent, herself infected, caring for children, one or more of whom are also infected, on public assistance, with all the historic mistrust of the established medical system has numerous realistic concerns about beginning protease inhibitor therapy that need to be discussed with an empathetic and knowledgeable professional who will not judge her (or him) for what ever decision she or he decides to make. In its simplest form what we are saying is needed is basic good mental health practice must have the capacity to begin where the client is at and empathize with all the issues that the client is bringing to his or her session.
Barriers to Success With Protease Inhibitors
As Strub (1997) notes, three factors highly relevant to successful combination therapy--compliance, absorption and resistance--are only dimly understood by the mass media, many people with HIV and tragically, far too many physicians, psychologists and social workers who work with HIV infected clients. If a patient cannot comply with the strict and rigorous dosing, scheduling and food requirements, the therapy is destined to fail because of the growth of insufficiently suppressed viral strains. Compliant patients unable to absorb the drug, due to diarrhea or gastrointestinal problems (including those caused by the drugs themselves)- are also likely to fail therapy. Diarrhea can flush out the drugs before they are absorbed into the body and have the opportunity to suppress the virus. In entering the age of protease inhibitor combination therapies, we have entered the era of resistance-based treatment choices. On triple combination therapy, even in the absence of viral activity, resistance can develop to one drug, while the other two are temporarily repressing viral activity successfully (Protocols for The Primary Care of HIV/AIDS, 1995).
In addition to the difficulties inherent in the need for rigid adherence to scheduling, each of the protease inhibitors has side effects that can range from annoying to debilitating. Wright, Blackburn and Taylor-Brown (1996) effectively summarize some of the difficulties inherent in protease inhibitor therapy.
"Protease inhibitors in combination therapy carry the promise of prolonged health. This
represents a major step toward transforming HIV from a life-threatening illness to a chronic
illness resulting in reduced hospitalizations and enhanced quality of life. A barrier to the use of
protease inhibitors is the need for life-long treatment. If protease inhibitors are not taken as
prescribed, drug resistance occurs. For patients who are 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? They risk becoming drug resistant and providers will become frustrated
with their noncompliance. Medication costs, are another significant barrier. This complex
information must be shared in a meaningful way." (pp 59-60)
What we believe these authors mean by the need to share the above described complex information in a meaningful way is the need for workers to have the knowledge and skills to be able to translate medical issues into every day language that patients can understand, in order that they can then participate in a meaningful discussion about their feelings whether or not to begin this therapy, and once begun, how to maintain such a rigorous medical regimen. In addition, professionals need to translate patients' concerns and reluctances to beginning this therapy to medical staff so that physicians, nurses and physician's assistants will understand the various and complex reasons why certain patients will decide that protease inhibitor therapy might not be right for them.
Social workers, psychologists and psychiatrists all have a vital role to play as members of the treatment team in translating patients' decisions not to begin or to cease protease inhibitors, to medical colleagues in such a way that the medical staff will not view these patients as either simply noncompliant, self-destructive or some other pathologized characterization which flies in the face of simply doing what they are told is in their best interests. Issues of compliance and adherence to medical regimens are not always an exact science. This is particularly so in nascent areas such anti-retroviral medications where it is still unclear to what extent behavioral factors associated with medication adherence interact with biomedical advances to improve client outcomes (Epstein & Cluss, 1982). Viral loads and T-cell counts are the current state-of-the-art as biomedical markers for efficacy of anti-retroviral therapy. The precise relationship between and extent of medication adherence and behavioral outcomes is yet unknown. Clients' capacity to sustain long-term medication adherence has been shown to correlate with other life changes which impact quality of life and ultimately beliefs that one can make a difference in his or her health outcomes (Epstein & Cluss, 1982; Fincham & Wertheimer, 1985; HIV Disease Pathogenesis, 1995). The mental health workers are in the unique position to contribute to our understanding of this relationship and to insure that patients who can not or chose not to utilize protease inhibitors are seen as multi-dimensional human beings who have made a treatment decision that appears correct to them at the present time.
Advocacy and Empowerment
As reported in the New York Times(March 2, 1997), some physicians are refusing to prescribe the new protease inhibitors to patients who they believe will not be able to comply with the required rigid medication schedule. There are some doctors who maintain that poor compliance with the drug taking regimen of protease inhibitor therapy could not only spell disaster for an individual patient, but also create a potential public health risk through the spread of a virus resistant to many drugs, (Sontag & Richardson, 1997). Some politicians rationalize that the high cost of these new drugs, combined with the limited funds available through ADAPT (AIDS Drug Assistance Plans) or medicare, means that decisions have to be made about rationing who gets the opportunity to benefit from the new drugs. This seems to be nothing more than good old fashioned American paternalism operating. Psychologists and social workers are actively engaging the physicians to include the patients in the decision making aspects of their care. "Doctors are making assumptions about who can handle this and who can't which inevitably brings a lot of prejudices to the surface," (Grossman as quoted by Sontag & Richardson, 1997, pp.1 + 35.). Dr. Bruce Agins, the New York State Health Department's chief AIDS doctor said the state "was very concerned about people being denied access to the drugs in a wholesale way because they belong to a category of people like junkies"(NY Times, 1997, p.35 ). Working with physicians around realistically assessing an individual's likelihood to be able to comply with the treatment protocol is an area where social workers can be particularly valuable patient advocates.
We are suggesting that no matter where a mental health professional no matter his or her discipline, is engaged in practice and no matter with what kind of patient, workers have to first educate themselves about the intricacies pertaining to protease inhibitors in order to be ready to work with clients whether as a primary psychotherapist, drug counselor, medical social worker, or case manager about evaluating the issues related to beginning and maintaining the difficult regiment of protease inhibitor therapy. We believe that the following are the tasks necessary in work with people with HIV who are contemplating beginning protease inhibitor therapy.
In an article about African-American women with HIV disease, Wright, Blackburn & Taylor-Brown, (1996) explain some of the difficulties professionals may experience in achieving the above tasks. "As social workers, one of our objectives is to provide an environment that will enhance clients own skills and development, even if that means they reject what we believe might be best for them"(p. 57). These authors go on to state "Once we have provided the information that they need to make informed choices, then we need to support them in their decision. Although admittedly, supporting a decision to refuse what we have to offer that would supposedly extend their lives is tricky for us"(p.57).
Wright, Blackburn and Taylor-Brown (1996) spell out specifically how mental health professionals can be helpful to clients considering Protease Inhibitors when they say: "As social workers we need to assist our clients in evaluating whether to take this medication or not by:
developing patient education materials that help women understand the medical and financial implications of the medications;
provide opportunities to discuss their concerns with providers and other patients;
working to maintain the relationship regardless of who the medical provider is or was remembering that our client is of primary concern;
need to assist the client in understanding past painful relationships or failures; and,
by remembering to respect the right of the client to refuse treatment options"(p.60).
From its origins in Denver in 1983, the People With AIDS movement has in fact been one contemporary example of a core principle of mental health practice in so far as it centers 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 once educated, in partnership with the doctor, deciding which treatments will be tried. All mental health professionals doing AIDS work need to be aware of opportunities to remind clients of this fact.
When a client is middle class, well educated and comes from a position of privilege in this society, it is easier to encourage him or her to be a sophisticated and demanding consumer of health care. Too often poor and other marginalized clients have little experience in advocating for themselves with doctors, nurses and health care institutions and agencies. Thus workers need to instruct all of our clients on how to go about becoming self-empowered, self advocating consumers of medical care without necessarily becoming adversarial. As professionals "empowerment means that we strive to provide our consumers with all the information we have at our disposal so that they can make informed choices about their lives" (Wright, Blackburn and Taylor-Brown, 1996, p.60).
Racial and Cultural Barriers to Protease Inhibitor Treatment
Historically, many people of color in the United States have a significant distrust of the traditionally white dominated 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). The origins of this distrust are underscored 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 under "natural" conditions thru end-stage -- death. Trusting that they were being treated for the disease, they unknowingly infected their wives, lovers and children. Given this historical context, it is understandable that African American PWAs would be skeptical about the health care system (Wright, et al, 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 same Establishment (white) providers (Cargill, 1995). All 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. "A major challenge in doing AIDS work is how do we communicate across cultures about medicines, illness, sickness and death, and how do you communicate new information in a way that is understandable and believable?" (Wright et al, 1996, p.59)
When Protease Inhibitors Work
Therapists and counselors must not arrive at sessions with clients contemplating or taking protease inhibitors with any preconceived ideas of how the client should be feeling about this new development. This is a prime example of that old but crucial social work principle of always beginning where the client is at. As the man quoted above 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. One man explained some of 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."
Work with persons anticipating use or questioning continued use of protease inhibitors requires the provider to address issues of access, compliance, side effects and maintenance early on and as frequently as necessary to facilitate the client's understanding of and empowerment in his or her health care (Soto, 1996).
The authors have talked with many 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. As welcome as an improvement in their health may be, it is not a development that can yet be trusted to last and because of this the individual who is experiencing a dramatic resurgence of good health is often understandably reluctant to invest too much hope in this latest change. When an individual has invested considerable emotional energy and hope in previous possible medical breakthroughs, only to have his or her hopes shattered, it becomes increasingly more difficult to muster up the same optimism and hope as before. Experiencing periods of hope coupled with let downs and despair can create powerful mood swings that lead in part to the well documented emotional roller coaster of living with HIV and AIDS.
All therapists and counselors need to elicit each client's feelings about new treatment options and give him or her the opportunity to discuss and explore all of their feelings in depth. One client explained his feelings about beginning protease inhibitors 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, another patient concurred:
"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. Again, therapists need to be alert to this dynamic and probe for any feelings that the client may have in this regard. After starting protease inhibitor therapy one man 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 is "Why am I here to benefit from these treatments, when so many others who I loved are already dead?"
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. These benefits extend beyond cash resources. For clients who have moved out of their independent living situations into residences for Persons with AIDS and other conjugate arrangements, the benefits of the biomedical sciences may jeopardize their status as a "worthy" recipient of continued support.
With patients whose health has improved so much that their physicians are questioning whether they can continue to justify a diagnosis of permanent disability, accompanying the good news are new worries. 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. For clients with limited work histories, or who have been chemically dependant for much of their adult lives, the loss of social supports offered to PWAs can create a sense of dread and a return to a life with few options for stable income, medical supports or housing. All the mental health professions need to either research or develop relationships with experts in the area of returning to work and the impact this has on the client's benefits.
When The Drugs Don't Work
One scenario that is extremely painful and frightening for clients with HIV/AIDS, their significant others, and health care professionals treating these individuals and their loved ones is the reality that between 10 and 30 percent of those who take the grueling course of new AIDS medications fail to respond (Jacobs, 1997). Thus it is clinically dangerous for professionals to allow their expectations and hopes for a dramatic improvement in the health of their clients to intrude into their daily interactions with these individuals. Clients who are feeling debilitated by the severe side effects (which in the daily routine can be seen as Main Effects) of protease inhibitors sometimes feel poisoned by the new treatment. Clients who are unable to tolerate the side effects of the drugs often wrestle in sessions with "what good are the protease inhibitors if they are extending your life but destroying the quality?" These individuals need to be encouraged to discuss their feelings about the pressing issue of: "At what price survival?" There are numerous patients who after a very brief period of benefitting from the new drugs, become overwhelmed by the side effects and today are no doubt sicker than they were before they began the new wonder drugs. One client who has not been able to tolerate protease inhibitors stated:
"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,"
"The perception that the plague is over has only compounded the misery of those who have failed on combination therapies" (Jacobs, 1997, section 13, p.1). For people who have had their hopes dashed countless times, it's crushing to be left out of this so called success story.
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. The patient quoted above 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. All non-medical workers need to be knowledgeable about anticipated side effects and to inquire about what side effects if any, the individual may be experiencing and how this is making him or her feel about this new regiment. In addition patients need to be coached to request anti-nausea and anti-diarrhea medications from their physicians. Providing clients with the information, encouraging proactive interactions with medical providers, and when necessary advocating on their behalf are all examples of nontraditional mental health interventions that must be considered in work with clients faced with the critical decision of taking anti-retroviral medications.
Jeffrey Karaban is deputy executive director of Body Positive, an AIDS organization in lower Manhattan. He sees a growing chasm between those who respond to combination therapy and those who don't. "A lot of old timers are feeling abandoned. They fear they'll become lepers, written off by drug companies who can't make a buck off of them," (The New York Times, February 2, 1997, section 13, p.12). Karaban goes on to explain how AIDS service organizations are developing specific services to meet the needs of both people who are benefitting from protease inhibitors and those who are not. Separate support groups are being formed at both Body Positive and at Gay Men's Health Crisis in New York City for clients who are successful on protease inhibitors and those long term survivors who have had no luck with protease inhibitors.
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 that has its roots in the fact that at the present time the longest period that protease inhibitors have been proven to be effective is eighteen months. It's very difficult to encourage people not to allow their dark thoughts about "what ifs" to overpower them. During counseling sessions they need to be reminded 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, their responsibility is to enjoy the improvements they are experiencing. Most 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.
Conclusion
The AIDS plague is not over, and protease inhibitors have not 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 that they seek out mental health professionals for assistance with. 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. The authors have shown how incorporating the primary tenets of the ecological perspective with the translational role of psychosocial intervention the worker can join with the client system to enhance self efficacy in making and sustaining difficult life choices associated with HIV disease. 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 affected by HIV/AIDS.
Individuals who are infected with HIV but are lucky enough to have the money, time, and education to become treatment sophisticated now have a shot at surviving AIDS. Tragically, a growing majority of people with HIV don't have money, education or even time to become as informed as they must to survive. This is where well informed and skilled mental health professionals can make an enormous difference in the lives of people living with HIV. All professionals must continue and advance the work with their clients to support treatment information and education, access to medications, maintenance of social supports as clients adjust to new medications and the prospects of returning to prior levels of functioning, life-long adherence to medication regimens and ultimately the decision to take medications which may have limited effects.
"Accompanying the life saving opportunity provided for the privileged by protease inhibitor therapy, there is also an enormous moral obligation" (Strub, 1997, p.12). Social workers must mobilize to demand and deliver equitable and systemic access, trials and real hope for everyone with HIV. The role of mental health professionals extend beyond the delivery of biomedical information and must encompass the capacity to work with the client system to translate information into useable terms and then work with the client to actualize these options in a manner that optimizes health outcomes, self-worth, and personal dignity.
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Key words: hiv, AIDS, protease inhibitors, social work