AIDS, Health, And Mental Health

A Primary Sourcebook

Judith Landau-Stanton, Colleen D. Clements

• Publisher: Routledge
• Year: 2019
• eBook ISBN: 9781317838999
• Topic: Psychology
• Subtopic: History & Theory in Psychology
• Index: Psychology

This volume presents a systems approach to understanding and managing the AIDS crisis - an approach that addresses the needs not only of HIV- infected individuals, but also of families and communities at risk from AIDS. Discussions are included on HIV epidemiology and risk reduction, medical management of the AIDS patient, and neuropsychiatric aspects of HIV infection. Strategies for psychotherapeutic intervention, from individual through group to extended family system, are described in detail. The authors examine spiritual, religious and cultural factors in communities and offer guidelines for building a community network for AIDS prevention and intervention. Full consideration is also given to ethical and policy issues, and to the risks faced by health care providers.  First published in 1993. Routledge is an imprint of Taylor & Francis, an informa company.

PART I

Applied Systems Principles in AIDS Prevention

CHAPTER 1

Correcting AIDS Metaphors and Myths with a Systems Approach

AIDS AND SYSTEMS THEORY

“In preventing AIDS,” said C. Everett Koop when he was the United States Surgeon General, “the moralist and the scientist could walk hand in hand.”¹ A pediatric surgeon, Koop came to his systems way of thinking about AIDS from his years of clinical experience working with very sick children and their families. He saw first-hand the interconnectedness of life experiences, ranging from the small silk sutures he used to reconnect a newborn’s congenitally deformed esophagus (esophageal atresias)¹ to the family’s role in supporting the child’s recovery and development, to the social systems that hold members in a relational compact of compassion and care. When he looked at AIDS, he saw the larger system:

“The politics of AIDS poses a threat not only to the health of some Americans but also to our constitutional safeguards of basic rights, to our ethics of care and compassion, to the very fabric of American society. Within the politics of AIDS lay one enduring, central conflict: AIDS pitted the politics of the gay revolution of the seventies against the politics of the Reagan revolution of the eighties.” (p. 197)

Koop’s clinical systemic view highlights the usefulness of systems theory, which gives the foundation for the moralist and scientist to build an integrated approach to AIDS. Something very exciting happened in the world of ideas this century. It has gone by many names: Family Systems Theory,² General System Theory,³ Hierarchy Theory,⁴ Chaos Theory,⁵ Community Ecology,⁶ Ecosystems Ecology,⁶ Wholistic Theory.⁷ Whatever the name, systems theory has become the modern methodology, used by biologists (ecosystems research, population dynamics), physicists and biomathematicians (chaos dynamics and “Attractors”), medical researchers (homeostasis, chaos systems in cardiac arrhythmias), and therapists (family therapy, co-dependency counseling). Because it is a synthesis, it can help answer questions in the humanities.⁸ This new tool can help us fully understand the interrelated problems generated by the HIV (Human Immunodeficiency Virus) infectious disease process⁹ and its syndromic classification, AIDS. Our educational and clinical models, which will be described in this book, apply the systems method in both educational and clinical intervention with AIDS. This approach gives breadth to the explanation and understanding of the HIV infectious disease process that is not possible with more traditional methods.

This chapter will explore the nature of the HIV infectious disease process and illustrate how the informational foundation for interventions can be developed. It will also summarize the practical usefulness of systems theory for AIDS educators, clinicians, counselors, therapists, and policy makers. We will begin this exploration by addressing issues of perception: How AIDS has been seen or construed, and how it has increasingly secured a place in society’s consciousness. The vehicles for these perceptions are the metaphors and myths that have gotten in the way of a positive approach to this disease and to the care of people who have contracted it.

THE METAPHORS OF AIDS

When HIV disease first caught the attention of the health care system, conflicting medical metaphors arose. Even when disguised as acronyms, such as “GRID” (Gay-Related Immune Deficiency), these metaphors were still present. Though closely related, these metaphors are slightly different from the way of hiding the reality of AIDS, which Shilts describes as “AIDSpeak,”¹⁰ or from the myths and misconceptions about HIV disease. The metaphors are broad analogies that frame the way professionals and the public think about AIDS without examining their deeper meaning.

Our University of Rochester AIDS Program experienced these metaphors and their rippling effects at all levels of the social system, including in: (a) front-line work in setting up community agencies, (b) specialized clinical treatment of AIDS patients, (c) academic research on medical and psychiatric problems, (d) therapy with AIDS patients and their families, and (e) ethical and policy questions raised by this disease. It became clear early on that a narrow and isolating picture of AIDS could give rise to troublesome metaphors that failed to capture the complete picture of AIDS. In fact, these metaphors could serve to disconnect the clinical, medical, research, family, community, pastoral, and social value systems from each other, causing adverse effects through all parts of the system. The metaphors were often silently accepted by society and, as a multidisciplinary team of AIDS educators and clinicians, we felt it was important to bring them “out of the closet” and develop more accurate metaphors.

Part of the problem was the name of the disease itself. After 10 years of experience with this disease, we still do not have an adequate name for it. The term AIDS refers to a syndrome and can be too narrow and misleading. The Centers for Disease Control’s (CDC’s) “HIV infection” does not convey the severity of the illness or its propensity to attack the nervous system directly. Ostrow’s⁹ “HIV infectious disease process” is medically correct but is too awkward. Perhaps the most telling and all-embracing metaphor about AIDS is the lack of a good name for it. For the sake of convenience, we have abbreviated Ostrow’s term to HIV disease, which will be used throughout the book.

At least nine metaphors have been applied to AIDS, as follows:

1. AIDS as a Homosexual Illness

GRID (Gay-Related Immune Deficiency) and the Gay Plague were early versions of this metaphor. The more scientific appearing GRID carried less hidden moral condemnation than Gay Plague, but both described the phenomenon as exclusively a gay man’s illness, something attached to homosexuality. This early identification of the disease with homosexuality created long-lasting effects. Because of it, American researchers initially missed the signs of the disease in intravenous drug users, in recipients of transfusions, in hemophiliacs, in babies and children, and in women. For years, its occurrence in these populations, even when recognized, was downplayed.

Because of acceptance of this metaphor, only one of the major ways of transmitting Human Immunodeficiency Virus (HIV) was emphasized, sexual behavior among homosexuals. Blood transmission was not sufficiently stressed, resulting in the infection of about 12,000 blood recipients before blood banks finally instituted screening.¹⁰ Meanwhile, HIV infection continued to spread through intravenous (i.v.) drug users and injection drug users (IDUs) in the urban centers and among the minority poor. Until very recently, significant programs of education and prevention were not developed, arriving too late for many. While European researchers were paying close attention to the disease in Africa, among a primarily heterosexual population, American researchers were focused on the gay community.

The American focus highlighted the gay community’s realistic experiences of homophobia and its movement for Gay Civil Rights as the central issues. But a result of the gay rights emphasis was the difficulty encountered in attempts to close bathhouses in San Francisco and New York City for health reasons, when political goals superseded a very serious risk to health and life. In 1982, Gaetan Dugas (the initial carrier in the study documenting the spread of HIV) was still going to bathhouses, while gay community leaders continued to oppose critics of multiple sex partners and the bathhouse lifestyle. In 1983, a meeting of gay leaders and bathhouse owners came to no resolution, and the owners suggested there was a mere one in 3,127,443 chance of contracting AIDS in bathhouses. San Francisco’s Public Health Director opposed closing the baths or requiring posted warnings to alert tourists during the Gay Freedom Day Parade. A compromise among gay community leaders and the Milk Club and Toklas Club, supporting some restrictions on the baths, collapsed just before a press conference called by the Public Health Director to announce restrictions.¹⁰

By October 9,1984, when the Director did close the baths at another press conference, the San Francisco AIDS Foundation still objected, based on civil rights reasons and the fact that there were already AIDS education posters in the bathhouses. Only the Milk Club, at considerable personal cost (ostracism) to members, supported the closings. And by that time, about two-thirds of the gay men who eventually tested HIV positive (HIV +) were already infected. The San Francisco gay community’s choice to see this problem as a gay rights issue, rather than a gay health issue, allowed the easy spread of the virus through the mechanism of bathhouses. This politicizing of a disease occurred even though a 1980 gay physicians’ conference had pointed with increased concern to the behaviors that even then had led to an 8,000 percent rise in enteric diseases (intestinal infection) and a 93 percent infection rate for Cytomegalovirus (CMV) and Epstein-Barr (E-B) pathogens, as well as a 66 percent infection with Hepatitis B and rising venereal disease rates.¹⁰

This metaphor of AIDS as a homosexual illness connected the disease with the movement to gain homosexual rights, making AIDS a political football. Although present-day AIDS education programs no longer refer to AIDS as a gay disease, the residual effects of this metaphor are important to understand since the approach to the disease is still guided by the metaphor.

2. AIDS as HTLV-III/LAV: The Prize for Competitive Research and Economic Gain in Medical Science

The dispute between French and American researchers over discovery of the virus and the marketing rights for the test produced another metaphor. The French researcher, Luc Montagnier, working from a better-informed theory, gave the Pasteur Institute preeminence by his discovery of the virus. Montagnier wished to call it lymphadenopathy-associated virus (LAV) because he felt that this virus was not a human T-lymphocyte virus (HTLV) type. He correctly believed that it was more closely related to a family of animal viruses, the retroviruses that caused visna, caprine arthritis encephalitis (CAE), and equine infectious anemia (EIA), all of which are lentiviruses (slow viruses). These (slow) retroviruses may cause both immune deficiency and severe neurologic disorders.

The American researcher, Robert Gallo, having received research samples from the Pasteur Institute, also claimed to have discovered the virus. He wished to call it HTLV-III since he felt it was a member of the group of viruses that he had discovered could cause leukemia in man and other animals. His insistence on linking what finally became known as Human Immunodeficiency Virus (HIV) to the HTLV-I and -II classification sent investigators off on the wrong track and also deemphasized any neurological symptoms of the disease. For a time, the virus used a hyphenated name, HTLV-III/LAV, before an international agreement was reached by political process, and the virus finally became known as HIV. Gallo is now involved in an investigation to determine if he inappropriately claimed joint discovery of the AIDS virus.

The mind-set engendered by this metaphor tended to keep many physicians unaware of the lentiviruses when thinking about this disease (even though Gallo has done significant work on the genetic and morphologic homology—evolutionary and structural similarity—of the lentiviruses such as HIV, Visna, CAE, and EIA¹¹). In public discussion the virus is usually presented as a retrovirus, without its linkage to the lentiviruses, which limits our understanding of HIV disease. This metaphor of HTLV-III/LAV also delayed the recognition of the significance of the primary neurological aspects of the disease.

3. AIDS as Defined as Severe Opportunistic Infection and Active Illness

Finally, of course, the disease became known as Acquired Immunodeficiency Syndrome, or AIDS. Persons whose immune systems are compromised by HIV disease are more susceptible to other infections and illnesses not caused directly by HIV. In other words, organisms that do not generally affect people (or if they do, the illness is circumscribed) frequently affect HIV + people severely. These illnesses seen as an accompaniment to HIV disease are called opportunistic infections and have been used as the diagnostic criteria of AIDS.

Physicians in the United States developed a list of opportunistic infections and physical manifestations that qualified for making the diagnosis of AIDS. These diagnostic criteria were derived from a study of the American gay population and were, therefore, very specific to this population. Pneumonia caused by pneumocystis carinii (PCP) was the principle defining disease for AIDS, along with Kaposi’s sarcoma (a form of cancer). Due to accidents of geography and subpopulation, these were the early criteria that most clearly defined the full-blown disease for American researchers. This gave rise to the metaphor of AIDS as opportunistic infection and active illness. Defining AIDS in terms of opportunistic infection and active illness is a diagnostic manual classification approach, rather than a full etiological (causal) and natural history of the disease approach. It is not a systemic, dynamic way of looking at the disease, but rather an end-stage diagnostic perspective that limits...

Table of contents

• Cover
• Half Title
• Title Page
• Copyright Page
• Dedication
• Table of Contents
• Contributors
• Preface
• Part I: Applied Systems Principles in AIDS Prevention
• Part II: Biopsychosocial Intervention: Clinical Management
• Name Index
• Subject Index