In early 1982 a small group of gay men met in response to the fact that some of their friends were becoming ill from a mysterious new illness. At this meeting they formed what was to become Gay Men’s Health Crisis (GMHC), the world’s first community based AIDS service organization. That summer I was asked by Diego Lopez, the social worker coordinating mental health services for the fledgling GMHC to become a volunteer and donate time and my clinical skills to help the men in my community who were sick with what at the time was known as GRID, (Gay Related Immune Deficiency).
Diego was one of first mental health professionals in the United States to respond to AIDS. Others in that first generation of AIDS mental health professionals were: Dr. Stuart Nichols, Dr. Bertram Schaffner, and Dr. Robert Remien in Manhattan; Dr. Lori Weiner, then at Memorial Sloan-Kettering Cancer Center in Manhattan; Gillian Walker and Dr. John Patten at New York’s Ackerman Institute; Mel Rosen, Dr. Michael Quadland, Dr. Ken Wein and Peter Seiford at GMHC in New York City Caitlin Ryan, then in Atlanta; Dr. James Dilley, Barbara Faltz, John Acevedo, Dr. Peter Goldblum, Dr. Leon McKusick and Judy Macks, in San Francisco; Bill Scott in Houston; Paul Clover in Austin; David Aronstein in Boston; Dr. Gary Lloyd in New Orleans; Dr. Wilfred Van Gorp and Steve Buckingham in Los Angeles; Bill Bailey at The American Psychological Association in Washington, D.C.; Anthony Hillin in London; and Dr. Marshall Forstein in Boston. Among the first individuals to begin to educate and counsel injection drug users about AIDS were social workers Luis Palacios-Jiminez and Edith Springer working at the Van Eten Methadone Maintenance treatment center in the Bronx. Some of these individuals are still working with people with HIV and AIDS, but too many others are now dead, themselves casualties of AIDS.
While the men and women named above were among the original pioneers of articulating and serving the mental health needs of people living with HIV and AIDS and their loved ones, by now well into the second decade of this epidemic, there have been and remain thousands of other dedicated mental health professionals insuring that the emotional and psychological needs of all people living with and affected by HIV and AIDS are met in sophisticated and sensitive ways. From the early 1980s, when AIDS was known as GRID (Gay Related Immune Deficiency), it became clear that serving individuals and populations impacted would require an integrated biopsychosocial approach. Today, even with the encouraging news about HAART (Highly active anti-retroviral therapy of which triple combination therapy is based upon, the impact of HIV on an individual’s, family’s and community psyche need to be continuously evaluated and responded to. It is precisely this professional work with the emotional and psychological issues related to living with HIV that the chapters that follow describe so eloquently.
Once it became clear that individuals who had shared intravenous drug using paraphernalia were also contracting AIDS, those of us who had experience in the drug treatment field began to train the staffs and volunteers of AIDS service agencies in the issues and dynamics of drug addiction, recovery and working with active and recovering drug users. These issues became incorporated into the professional trainings that were offered to agencies, hospitals and other facilities. By 1984 drug treatment facilities were regularly requesting training on AIDS for their staffs and clients.
As the HIV pandemic has spread in developed countries, in Africa and Asia it has highlighted all of the social ills and inequities in contemporary society. In western countries like the United States, people infected with HIV who are privileged enough to be educated, sophisticated consumers of medical care with private insurance are living longer than poor uninsured people, who all too often are women and people of color. In undeveloped countries where medical care has never approached the standards of twentieth century medicine people with AIDS die much faster than those lucky enough to be living in developed countries with health insurance and access to the most sophisticated diagnostic and treatment procedures. In the United States, the disparity in AIDS care, who is dying from the disease and how quickly they are dying is a mirror of the class, race and economic inequities that are only growing more profound in this country. For most poor and all uninsured people in the United States, AIDS is a third world illness with women and children of color dying sooner than middle class people with access to sophisticated treatments. From the onset social workers, psychologists, and psychiatrists have been on the vanguard of developing and providing services for all people with HIV and AIDS, and advocating for the under served client populations ravaged by AIDS world wide. In his ground breaking chapter, James Grimaldi discusses issues for one of the populations of people with HIV/AIDS that remains grossly under served even now, in the second decade of this plague, male to female pre-operative transsexuals.
In the United States, the largest AIDS service organizations (ASOs) were founded by and for middle class gay (predominantly white) clients who were not being adequately served by existing health and social service organizations. They are now the AIDS establishment and unfortunately often are in competition with smaller community based organizations that specifically serve communities of color for shrinking funds. By the late 1980s, several years into the epidemic, the large ASOs like AIDS Project Los Angeles and Gay Men’s Health Crisis in New York began to develop services for the newer faces of AIDS: women, people of color and injection drug users, while continuing to serve their original constituency.
The community based AIDS service organizations were initially not prepared for all of the cultural differences that arose from having to additionally serve non-gay and non-white clients. Almost all of the AIDS service organizations in the major cities reported conflicts and clashes between different groups of clients. While recognizing that poor, non white and injection drug users with HIV/AIDS needed services also, many gay men resented sharing the organizations they had started and funded with nongay people. Often these middle class white gay men were quite racist. In addition there were middle class, nonwhite gay men who like their white fellow clients resented having to share “their organizations” with heterosexuals and intravenous drug using people with AIDS.
One reason so many gay men with AIDS resented the expansion of services by ASOs to non-gay people was rooted in the reality that prior to the development of ASOs there were few gay identified health care services available to treat them in sensitive ways. Before AIDS, the delivery of health care in the United States was almost exclusively dominated by homophobic professionals and institutions. Thus, gay men with AIDS were scared — often with good reason– that they would be soon be excluded from the ASOs which they had helped begin for themselves, their friends and their community.
Contributing to the tension among clients at the ASOs was the fact that non-gay clients were often verbally and aggressively homophobic. What the evolving realities of AIDS created was an immediate need for the staffs, volunteers and clients of the existing community based organizations to learn about cultural diversity. Trainers from communities of color were called in to do the trainings on racial and ethnic differences and how to be sensitive to the unique issues faced by these populations. Ultimately the community based organizations realized that they needed to hire people who reflected the diversity of clients they were now serving. In his fine essay Larry Gant provides numerous suggestions for attempting to address racism within ASOs.
We are now well into the second decade of the HIV/AIDS epidemic. There are exciting breakthroughs in AntiRetroviral combination therapies that include protease inhibitors and continuously improved treatments and prophylaxis for opportunistic infections. The chapter by Darrell Wheeler and Michael Shernoff explores how mental health professionals can be useful to clients around issues pertaining to protease inhibitors, and Michael Bettinger poignantly discusses how issues of work and returning to work can be dealt with therapeutically, while Dr. Mark Thomas describes how the new treatments are impacting support groups for people with AIDS.
Yet there is no indication that either a cure or vaccine is in sight or that prevention efforts will stop new infections. There is a second wave of infections among educated, middle class urban gay men for whom infection rates had dramatically dropped as a result of the initial AIDS prevention efforts aimed at them in the early days of the epidemic. Infection rates for young gay men, especially among black and Latino gay adolescents are still high and show no indication of slowing down (see Peter Newman’s and Edith Springer’s chapters for discussions of prevention efforts aimed at this group). New infections among injection drug using individuals are also not abating. AIDS is continuing to decimate inner city neighborhoods with three generations of some families being infected or having died from AIDS (the chapters by Ednita Wright, Evelyn Blackburn & Susan Taylor-Brown; Patricia Stewart, Anette Hughes and Lori Weiner speak eloquently to these issues). Recent years have shown how living in the midst of this ongoing plague has a psychosocial impact on even those who are not infected, and new prevention efforts are targeting these populations. Steven Ball’s and Carl Locke’s chapters discuss a group model specifically targeting uninfected gay men.
In developed countries current medical breakthroughs have resulted in a dramatic increase in the numbers of people who are long term survivors. “As of 1990, the Centers for Disease Control (CDC) defined a long term survivor as any person living for more than 3 years following a diagnosis of an AIDS-defining opportunistic infection” (Remien & Wagner, 1995, p. 180). Remien and Wagner (1995) also discuss a sub-group of long term survivors known as “long-term nonprogressors.” These are HIV positive individuals who have a confirmed exposure for at least ten years and show minimal or no signs of being immune compromised. There is now a category of people labeled “slow progressors” who like the nonprogressors have a confirmed exposure to HIV for at least ten years. These people have never had an AIDS defining condition, but blood work shows evidence of a compromised immune system. Many of these people now show no detectable levels of viral activity due to the new combination “cocktail” therapies. In his chapter James Cassese discusses clinical issues that arise in practice with long-term survivors and nonprogressors from a self psychology perspective. Even with these breakthroughs many people with HIV will die from the disease. Michael Shernoff’s chapter on Counseling End Stage Clients With AIDS provides a framework for working with clients at the very end of their lives. Michael Holtby’s two chapters will seem controversial to many in his advocacy for all counselors and therapists to be professionally supportive to clients who choose to end their own lives once they decide that they no longer have either the stamina or will to continue to fight for their lives.
Even if a vaccine were discovered today with incubation rates that can take up to ten or fifteen years from infection to onset of disease, people living with HIV and AIDS will be populations served by the mental health professions for at least another generation. The cost to society not only in terms of medical and social services and entitlements is staggering. But these costs pale in comparison to the cost in human lives lost and lives shattered by AIDS.
Both the gay community and communities of color are overwhelmed by the quantity of people who are sick and who have died. Entire families and friendship networks have been wiped out. Some AIDS workers and other service providers working at agencies, hospitals or in private practice have worked with literally hundreds of individuals who have died. Out of the AIDS epidemic the term “bereavement overload” was coined. The impact of working with large numbers of people who have died, and preventing these skilled clinicians from burning out has only recently begun to be addressed. One of the best ways to prevent burnout is through appropriate training and preparation for working in the field of AIDS. Another way is by building in time for staff support groups and additional mechanisms where professionals can process all the feelings that are a natural byproduct of AIDS work including grieving their losses. The chapters by Barbara Willinger and her colleagues and David Strug et al speak eloquently to these issues. In addition, there are unique issues that arise when providers themselves are seropositive or become symptomatic and have to struggle with whether or not to continue working in the field.
This book is not meant to be an introduction to the basics of HIV and AIDS, either medically or psychosocially. It is rather one effort in continuing to provide professionals in the field and students in training with the most current practice information about mental health practice and HIV/AIDS. The authors are all experts seasoned by their many years in the trenches of working with people with HIV and AIDS. They share their expertise about cutting edge clinical and policy issues in the pages that follow. The articles reflect the diversity of people impacted by HIVdisease. Yet there are still many faces of HIV/AIDS that could not be included in this book due to space limitations.
Most of the articles in this book were originally published in a journal that I was the founding editor of called Reading & Writings published by The National Social Work AIDS Network, a national organization of HIV/AIDS social workers. All people living with or affected by HIV/AIDS have enormous and complex mental health and social service needs due to the harsh realities of HIV disease, racism, homophobia, poverty and the ever growing mean spiritedness that is so prevalent in the repressive political climate of diminishing social services for the neediest people in our society. Historically some mental health professionals have made critical differences in the lives of people. As the articles in this book demonstrate, many are still on the front lines of working to ameliorate social injustice, only now in the era of AIDS. The work reflected in this book is a large part of why I am proud to have been one of the legions of professional social workers, psychiatrists, psychologists and counselors surrounded by inspiring colleagues in the fight against AIDS.
Remien, R. & Wagner, G. (1995). Counseling long-term survivors of HIV/AIDS. In W. Odets and M. Shernoff (Eds.). The second decade of AIDS: A mental health practice handbook (pp. 179-200). New York: Hatherleigh Press.
Category: AIDS/HIV Articles