HIV/AIDS Community Information Services

Experiences in Serving Both At-Risk and HIV-Infected Populations

M Sandra Wood, Jeffrey T Huber

• Publisher: Routledge
• Year: 2013
• ISBN:
  9781317950998
• Edition: 1
• Topic: Medicine
• Subtopic: Diseases & Allergies

Information forms the basis for education, and currently education is the only weapon available to stem the spread of HIV/AIDS and to foster empathy toward individuals already affected by the disease. HIV/AIDS and Community Information Services provides readers with insight into the information construct within the AIDS arena and how that construct affects the provision of information services to the HIV/AIDS affected population. It will serve as an irreplaceable reference as the number of individuals with AIDS increases, creating a greater demand for information and making that information increasingly difficult to provide.While directories exist to assist with practical approaches to accessing HIV/AIDS-related information, none had served as a comprehensive resource concerning the nature of that information or the provision of information services. HIV/AIDS Community Information Services fills that void. It fosters the enlightenment of the general public concerning the true nature of HIV/AIDS, guides readers in providing information services--both educational and recreational--to individuals affected by HIV/AIDS, and encourages the dissemination of instructional materials to those individuals at risk for infection. In doing so, contributors provide readers with information about:

• the relationship between AIDS and the body of information concerning the disease
• the complex nature of HIV/AIDS-related information
• available HIV/AIDS information services
• information as a means for empowerment
• suggestions for future programs, potential collaboration efforts, and innovative servicesAn essential guide for information professionals, librarians, health educators, counselors, members of community-based AIDS service organizations, and individuals affected by HIV/AIDS, HIV/AIDS Community Information Services foster the creation, accession, collection, organization, dissemination, and sharing of information concerning the HIV/AIDS epidemic and promotes the provision of services to individuals already affected by HIV/AIDS.

Chapter 1

The Complex Nature of the Epidemic

THE HUMAN IMMUNODEFICIENCY VIRUS AND THE ACQUIRED IMMUNODEFICIENCY SYNDROME: A STUDY IN CONTROVERSIES AND COMPLEXITIES

Although the acquired immunodeficiency syndrome is clearly defined in biomedical terms and for the biomedical community, an AIDS diagnosis reaches far beyond biomedicine. The impact of this disease calls for a multidisciplinary response. With the abundant growth in the prevalence of AIDS cases, each additional diagnosis-wittingly or otherwise-ripples through the local community to society at large. The social construct within which HIV and AIDS exist cannot be ignored.

THE NATURE, SCOPE, AND COMPLEXITIES OF DEFINING HIV/AIDS

The Treatment of HIV Infection as a Disease

At the outset, the illness that we now call AIDS (the nomenclature assigned in the summer of 1982) was known by a host of names including, but not limited to, GRID (gay-related immune deficiency), ACIDS (acquired community immune deficiency syndrome), and CAIDS (community acquired immune deficiency syndrome).

In order to understand better the complex nature of this illness, it is necessary to examine the treatment of HIV infection as a disease. Spatialization of disease has been plotted by Foucault in an historical continuum that parallels the development of the scientific foundation for modern medicine (anatomical pathology) and societal delineation of the pathological. This spatialization of the pathological has been characterized as (1) primary (configuration of the disease); (2) secondary (localization of the illness in the body); (3) tertiary (ordered and presented in a manner deemed suitable by and to society); and (4) quaternary (institutional spatialization of the illness).¹ In the context of HIV and AIDS, however, this historical continuum disintegrates, and spatialization digresses to its primitive form while remaining socially circumscribed.

Primary spatialization of the pathological is concerned with the nosological picture of the disease-how the illness is described or classified. This classificatory theory does not account for the causes and effects of the illness, the constellation of signs and symptoms that accumulate to form a chronological series of events, or the visible trajectory of the malady within the human body. In the case of HIV infection and AIDS, this initial spatialization may be evinced in the nomenclature first used to describe the disease-the gay plague, gay bowel syndrome, gay-related immune deficiency. In classifying the illness at the outset of the epidemic, terminology was employed assigning the pathological to the population initially thought to be most affected rather than describing the malady itself. The terminology used was designed to define an unknown fear. In this manner, the individual affected by HIV/AIDS received no positive status. Thus, the politicization and stigmatization that continue to circumscribe the pandemic were established.

In secondary spatialization of disease, the illness is mapped out upon the concrete structure of the human body. This articulation of the pathological on the body requires knowledge of basic anatomy that can be obtained only through the physical examination of the diseased tissue. The patient becomes essential to identifying and understanding the clearly ordered forms of the malady. Initially however, the acceptance of dissection-the foundation for pathological anatomy-faced several obstacles including, but not limited to, morality, religion, and prejudice. Once a positive observation of dissection for the purpose of studying and understanding diseased tissue and its relation to the various parts of the body was established, “the knowledge of the living, ambiguous disease could be aligned upon the white visibility of the dead.”²

The problem with the secondary spatialization of HIV/AIDS, in part, is that the politicization and stigmatization established under primary delineation has not been overcome. Obstacles once barring the introduction and use of dissection-such as morality, religion, and prejudice-continue to be associated with this disease. Many individuals with HIV remain unidentified, both in life and in death. This anonymity is often achieved and upheld through a desire on the part of the individual affected by the illness not to be identified as an HIV-infected body. The pandemic has forced renewed examination of culturally sensitive subjects-death, homosexuality, human sexuality-that society has historically chosen to censor or ignore. While these issues commonly associated with the epidemic are in fact a very real part of life, the ramifications of owning an HIV diagnosis or developing AIDS are multiple and often overwhelming. In addition, many physicians do not wish to work with HIV-infected bodies. Where a close proximity between patient and physician is required in order to progress to a true secondary spatialization of HIV/AIDS, all too often a wedge has been driven between these two necessary factions preventing the examination of the infected tissue.

Tertiary spatialization of the pathological is defined in terms of social space-societal regimens and upheavals, economic constraints, political ambitions, Utopian ideas-confronting both primary and secondary identifications of disease. The structure of these two factions (social versus medical) are of very different natures, as are the laws governing each body. The result of this confrontation is illness presented in terms of “all gestures by which, in a given society, a disease is circumscribed, medically invested, isolated, divided up into closed, privileged regions, or distributed throughout cure centres, arranged in the most favorable way.”³ Society takes what is medically proven and represents it in a manner found to be acceptable, not offensive. For HIV/AIDS, this tertiary spatialization exacerbates the politicization and stigmatization established under its primary description, and further complicates the problems evinced in its secondary delineation. The disease, when and if it is discussed, becomes surrounded by a host of metaphors, euphemisms, and misinformation rather than accurate terminology. In an extreme effort not to offend society, quarantine and isolation become very real possibilities. Laws are sought to protect society from those infected. For the person with HIV, this social spatialization may be likened to abandonment, ostracism, or banishment.

The final step in the continuum of the development of modern medicine (or the quaternary spatialization of disease) consists of the institutionalization of the pathological. “The medicine of spaces disappears.”⁴ Primary, secondary, and tertiary spatialization of illness mesh together, resulting in a medicine that is invested with a genesis, power, rationality, and structure of its own. The goals of society and medicine combine, ensuring that the art of curing continues to exist and flourish. HIV/AIDS, unlike most diseases, has not yet reached this plateau. The many legal, medical, psychological, religious, and social complexities that riddle its space have prevented this from being the case. In essence, the human immunodeficiency virus and the acquired immunodeficiency syndrome continue to be defined and circumscribed by primitive spatialization, to exist in a medicine of spaces rather than on an integral plane that fosters empathy and Compassion.

Defining HIV/AIDS

In 1981, shortly after the first cases were diagnosed, the Centers for Disease Control (CDC)-now the Centers for Disease Control and Prevention-established a surveillance case definition in an effort to monitor the spread of the disease. However, it was limited in that the definition detailed a prescribed list of opportunistic infections that had to meet specific criteria for definitive, as opposed to presumptive, diagnosis.

In subsequent years-as more began to be known and understood about the disease-the need for a definition which allowed for more sensitivity in case assessment became apparent. So, in 1985 the prior CDC surveillance case definition was expanded to include such pathogenic conditions as certain non-Hodgkin's lymphomas, chronic isosporiasis, and disseminated histoplasmosis.⁵

By 1987, it had become evident that the 1985 revision of the case definition was inadequate; so the Centers for Disease Control issued the “Revision of the CDC Surveillance Case Definition for Acquired Immunodeficiency Syndrome.”⁶ The objectives of the amended version included: (1) to track more effectively the severe morbidity associated with HIV infection; (2) to simplify reporting of AIDS cases; (3) to increase the sensitivity and specificity through the application of HIV-antibody laboratory tests; and (4) to be consistent with current diagnostic practices. This final clause allowed for inclusion based on presumptive-rather than definitive-diagnosis for several diseases such as Pneumocystis carinii pneumonia (PCP), Kaposi's sarcoma (KS), and toxoplasmosis of the brain. The revised definition also included the addition of several definitively diagnosed diseases when accompanied by laboratory evidence for HIV infection such as HIV encephalopathy (HIV dementia), HIV wasting syndrome (slim disease, cachexia), and extrapulmonary tuberculosis; thereby expanding the field of indicator diseases to encompass a more diverse collection of clinical manifestations.⁷

It should be noted that the CDC definition was developed for epidemiologic surveillance, and not as a description of the disease. This has direct impact on the degree of AIDS-related assistance for which an individual may qualify, since the CDC definition typically serves as the determinant for AIDS-related policies and procedures. The revised definition neither comprised every HIV-related illness, nor did it account for all causes of morbidity resulting from HIV.⁸ Similarly, the revision did not include any specific gynecological indications of HIV infection.

In an effort to more accurately reflect the manifestations of HIV and those individuals infected with the virus, the CDC revised the definition again in 1993. The major additions under this revision included: (1) the inclusion of three clinical conditions-pulmonary tuberculosis, recurrent pneumonia, and invasive cervical cancer; and (2) all HIV-infected persons who have a CD4+ T-lymphocyte count less than 200 cells per cubic millimeter of blood. Although the indicative criteria for reporting cases of AIDS has, to date, been revised three times, it is probable that the definition will continue to evolve-thus reflecting the increased understanding of the pandemic. (See Appendix A for various manifestations of the case definition of AIDS.)

As was the case with the acronym AIDS, the term HIV developed over the course of the epidemic and was preceded by other names. Luc Montagnier dubbed the retrovirus (discovered by him and his research team in 1983 at the Pasteur Institute) lymphadenopathy-associated virus (LAV). Shortly after Montagnier 's discovery, Robert Gallo at the National Institutes of Health declared the retrovirus he discovered in 1984 to be human T-cell lymphotropic virus III (HTLV-III). After much controversy, it was learned that the two discoveries were, in fact, the same. Therefore, the retrovirus was renamed as the human immunodeficiency virus (HIV) and it is this virus that is believed to cause AIDS. This final christening, however, did not ensure the immediate replacement of previously accepted terms.

HIV and AIDS, although not synonymous, are often used interchangeably. According to the surveillance case definition, infection with the human immunodeficiency virus has direct implications for an AIDS diagnosis. However, it is not uncommon for the term AIDS virus to be used rather than HIV. In point of fact, HIV refers to the virus that suppresses the human immune system, thus promoting various opportunistic infections and/or cancers which produce a constellation of symptoms known as the acquired immunodeficiency syndrome. Someone who is HIV infected does not necessarily have AIDS.

In the model progression of HIV and AIDS, an individual is first infected with the human immunodeficiency virus and subsequently is diagnosed with the acquired immunodeficiency syndrome. However, in reality, this is not always the case. Many individuals first discover they have been HIV infected at the time of their AIDS diagnoses. Some individuals, while aware of being infected, may progress quickly to full-blown AIDS while others may be long-term survivors or nonprogressors (individuals who are HIV infected but show no decline in CD4 counts over a period of seven to 12 years). This is further complicated by a lack of consistency, and lack of precision, in use of the terminology. As stated previously, being diagnosed HIV positive does not constitute having developed AIDS-a distinction critical within the AIDS arena but continuously overlooked. Conversely, as the definition of AIDS continues to evolve and grow (reflecting the recognized changes within the epidemic and encompassing more sensitive diagnostic procedures), the distinctions concerning disease progression will be blurred.

Under the current surveillance case definition, onl...

Table of contents

• Cover
• Half Title
• Title Page
• Copyright Page
• Dedication
• About the Author
• Table of Contents
• Introduction
• Chapter 1. The Complex Nature of the Epidemic
• Chapter 2. HIV/AIDS Information
• Chapter 3. HIV/AIDS Information Resources and Services
• Chapter 4. Information Networking and Partnerships
• Chapter 5. Looking Beyond Existing Resources and Services
• Appendix A. Case Definitions of AIDS
• Appendix B. AIDS Classification Systems
• Appendix C. Internet Resource Sites
• Appendix D. Organization Information
• Index