Handbook of HIV and Social Work

Principles, Practice, and Populations

Cynthia Cannon Poindexter

• Publisher: Wiley
• Year: 2010
• ISBN:
  9781118012109
• Edition: 1
• Topic: Ciencias sociales
• Subtopic: Trabajo social

Praise for Handbook of HIV and Social Work

"Cynthia Cannon Poindexter has given us a remarkable edited volume that contains much information on HIV that every professional social worker needs to know in order to practice competently in today's complex world."—From the Foreword by Vincent J. Lynch, MSW, PhD, Boston College Graduate School of Social Work

"This comprehensive handbook assembles a group of social work scholars and practitioners to participate in, guide, and address many of the unresolved challenges characterizing the HIV debates. This handbook is a valuable and timely addition to the literature."—King Davis, MSW, PhD, The Robert Lee Sutherland Chair in Mental Health and Social Policy, The University of Texas at Austin School of Social Work

"This handbook is an outstanding resource for the social work professional working to ensure equal access to care, treatment, and resources for all persons living with and/or affected by HIV."—Evelyn P. Tomaszewski, MSW, Project Director, NASW HIV/AIDS Spectrum: Mental Health Training and Education of Social Workers Project

"This book is an excellent, up-to-date guide on HIV. It is an indispensable resource for all those who work with HIV and all its complications."—Leon Ginsberg, MSW, PhD, Dean Emeritus, University of South Carolina School of Social Work and Editor, Administration in Social Work

The most current knowledge on the HIV pandemic in a thorough, diverse, and accessible volume

This invaluable book draws on a distinguished roster of HIV advocates, educators, case managers, counselors, and administrators, assembling the most current knowledge into this volume. Handbook of HIV and Social Work reflects the latest research and its impact on policy and practice realities, with topics including:

• History, Illness, Transmission, and Treatment
  
  

• Social Work Roles, Tasks, and Challenges in Health Care Settings
  
  

• HIV-related Community Organizing and Grassroots Advocacy
  
  

• The Impact of HIV on Children and Adolescents
  
  

• HIV-affected Caregivers
  
  

PART ONE

HIV BASICS AND SOCIAL WORK PRINCIPLES

Chapter One

HIV HISTORY, ILLNESS, TRANSMISSION, AND TREATMENT

Ryan M. Kull

INTRODUCTION

HIV disease—a condition caused by infection with the human immunodeficiency virus—is a complex, incurable illness that can lead to a life-threatening condition called Acquired Immune Deficiency Syndrome (AIDS). Since the first documented AIDS-related deaths in 1981, HIV disease has grown into a global epidemic—known as a pandemic—that profoundly affects individuals and their interpersonal relationships throughout the human life cycle. In addition to being a serious biological disease, HIV creates social, political, and economic problems that highlight international injustices. HIV disease brings global attention to homophobia, oppression of women, racism, poverty, and health care disparities.

Early in the pandemic, it was clear that people could reduce HIV transmission if they had access to the tools to do so, such as condoms, clean needles, and reproductive care. Advances in medication treatments have made HIV disease more manageable and much less deadly, but millions of people worldwide still do not have access to adequate medical care and treatment. A person with access to skilled HIV care in New York City might perceive and experience HIV disease quite differently than a working-class single mother in the rural southern United States. Epidemiological data illuminate how HIV disease disproportionately affects marginalized people throughout the world: Women, African Americans, Latinos, those in poverty, sex workers, injecting drug users, and men who have sex with men. While advances have been made in the medical treatment of HIV, social and political actions have fallen behind.

Health care and social service professionals can have a powerful impact on the effects of HIV. Basic knowledge about the science of HIV disease—how it is transmitted, prevented, and treated, as well as its sociopolitical history—is an important foundation for any human services practitioner. This chapter provides basic historical, epidemiological, biological, immunological, medical, and prevention information so that social service providers can be prepared to provide information and support to persons with HIV and those at risk for HIV infection. Some information found in this chapter is knowledge that will remain relatively stable over time (for example, information about biology, transmission, and history). Facts about treatment, prevention, and epidemiology change more frequently, and those working in HIV services should monitor these changes regularly.

Acknowledgments: I thank Laura Pinsky, Peter Staley, and Dr. Paul Bushkuhl for their expertise on the medical and prevention aspects of HIV and AIDS, and Michael Clemens for feedback on a draft of the chapter. I am also grateful to Chris for providing his perspective on living with HIV.

THE EMERGENCE OF HIV IN THE UNITED STATES

The First 20 Years

From June to August 1981, the Centers for Disease Control and Prevention (CDC) published three reports documenting two rare conditions—a form of cancer called Kaposi’s sarcoma (KS) and a pulmonary condition called Pneumocystis carinii pneumonia (PCP)—in previously healthy men living in New York and California (CDC, 1981a, 1981b, 1981c). Of the 108 documented cases, 95 percent were 25 to 49 years of age and 43 of the men had died. The mysterious link between these rare fatal illnesses and the subjects’ histories of same-gender sexual behavior confounded public health investigators. Because physicians treating these cases associated the illness with men who identified as gay, names like gay-related immunodeficiency disease (GRID) and gay cancer were assigned to the condition. The CDC—a branch of the government public health service that monitors and intervenes in existing and emerging diseases—sent researchers to investigate the possible causes of this emerging public health crisis. Through months of extensive interviews, medical examinations, and analyses of social networks, researchers speculated that the mysterious illness was likely caused by an infectious microorganism transmitted between people through sexual contact.

Gay men were not the only population being affected by this newly discovered disease. In the first half of 1982, the CDC had documented cases among people with hemophilia, injection drug users, heterosexuals, babies, and Haitians. Because the disease was no longer considered to be limited to gay men, and because it was transmitted not only through sex but also blood contact, the CDC identified the illness more broadly as acquired immune deficiency syndrome, or AIDS (Harris et al., 1983).

In 1983, a French virologist Dr. Luc Montagnier and his research team at the Pasteur Institute isolated HIV, the virus that causes AIDS. By mid-1985 this pivotal discovery led to the development of an antibody test which could detect HIV in the blood supply and human infection well before an AIDS diagnosis. The HIV antibody test remains the gold standard for diagnosing HIV infection to this day.

In the absence of a clear scientific understanding of AIDS, the disease readily became a metaphor for the “immoral” behavior of gay men and drug users. The pandemic’s emergence during Ronald Reagan’s presidency, backed by social and religious conservatives, resulted in a lack of federal governmental attention to the public health emergency. President Reagan did not make any reference in his speeches to AIDS until 1987, six years after the first reports of a fatal infectious disease. That same year, Republican senator Jesse Helms introduced a bill that refused federal funding to groups that “promote” homosexuality in their education and literature, creating a significant barrier to public funding of gay-related AIDS organizations (Levine, Nardi, & Gagnon, 1997).

Gay communities in New York City and San Francisco, responding to political and social inaction, organized grassroots political action and community advocacy groups such as AIDS Coalition to Unleash Power (ACT UP), Gay Men’s Health Crisis (GMHC), and AIDS Project Los Angeles (APLA). ACT UP’s primary mission was to bring attention to the absence of a public health response to the AIDS crisis; the slogan “Silence = Death” (see Figure 1.1), accompanied by a pink triangle that the Nazis used to identify homosexuals, became a symbol of AIDS activism. The coalition sponsored highly effective, nonviolent demonstrations at locations deemed critical to combating the public health response and institutionalized homophobia (a 1990 demonstration at the National Institutes of Health is a good example of their tactics). Over several years, ACT UP uncovered inherent disparities in U.S. health care delivery, not just for gay men living with HIV, but also for women and people of color, and broadened their message to “health care is a right.” ACT UP is credited for significant changes in the ways pharmaceutical companies and the FDA research and approve medications through the clinical trial process, as well as bringing national attention to the AIDS crisis and discrimination.

Figure 1.1 Silence = Death

Source: Silence = Death Project (1986).

AIDS gained greater media attention when public figures affected by HIV entered the spotlight, leading to widespread awareness, controversy, and fear. Rock Hudson, a prominent Hollywood star who was a leading man in romantic roles, began showing signs of illness and deterioration and publicly announced in 1985 that he had AIDS. He died shortly thereafter. Some describe this as “giving AIDS a face,” which simultaneously signified a pivotal moment in gay and lesbian recognition. Never had such a prominent Hollywood icon openly and publicly acknowledged being gay, and AIDS awareness spurred a powerful gay and lesbian movement. Olympic medalist Greg Louganis and basketball star Magic Johnson are two professional athletes whose HIV status created controversy in the sports world, and both have become public advocates for HIV awareness and prevention.

In 1984, Ryan White, a 13-year-old Indiana boy with hemophilia, was diagnosed with AIDS. Ryan’s diagnosis drew national attention due to the stigma he experienced in his public school. Initially the superintendent barred Ryan from attending school, and after that was reversed, a group of parents sued to keep him out. Despite the confirmation of his right to attend school by the courts, the daily verbal and emotional assaults that he experienced forced him and his family to move to another community and school. After Ryan White’s death in 1990, Congress passed the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act, the first legislative initiative to provide comprehensive care funds for people with AIDS (PWAs). The act provided emergency relief grants to cities with more than 2,000 AIDS cases to provide care for people with AIDS and funding for prevention and intervention for at risk groups. In 2006, the CARE Act was renamed the Ryan White HIV/AIDS Treatment Modernization Act, which placed greater emphasis on funding medical care-related programs and services. In fiscal year 2008, $2.1 billion of federal funds were allocated toward the Ryan White HIV/AIDS program.

The number of HIV infections and deaths peaked in the 1990s. This was partly attributed to the introduction of a 1993 revised case definition for AIDS that not only measured the disease through clinical manifestations (that is, symptoms or opportunistic illnesses), but also through the measurement of cells critical to immune function, called CD4, or T cells (Castro, Ward, & Slutsker, 1992). Levels of the CD4 marker helped determine disease progression. A CD4 count below 200 signified an infected person’s acute risk for AIDS-related illnesses and death. The revision also shifted AIDS diagnoses among women by including cervical cancer and other diseases specific to HIV-infected women in the new criteria (Castro et al., 1992). Case definition revisions influenced important changes in U.S. HIV-related health policies during the 1990s.

The Clinton administration, taking office in 1992, made notable advances in HIV funding, increasing allocations to the CARE act by 200 percent, targeting funds to research, prevention, and housing. President Clinton also developed the Office of AIDS Research, responsible for overseeing efficient allocation of HIV research funds, and passed an AIDS disaster bill that provided up to $4 billion for research.

A highly significant HIV-related development was the introduction of uniquely effective medication treatments. A 1996 cover story for the New York Times Magazine titled “When Plagues End” (Sullivan, 1996, November 10) captured a powerful, though misguided, optimism for an imminent HIV cure. Dr. David Ho, a principal researcher at the Aaron Diamond AIDS Research Center was Time magazine’s 1996 Man of the Year for his role in developing a promising new drug class called protease inhibitors and a highly effective HIV-inhibiting triple-drug treatment (called “combination therapy”). New technologies developed to measure HIV levels in blood led to Ho’s discovery that HIV was never, in fact, latent; rather, billions of HIV particles were being produced daily, slowly wearing down the immune system. Presumably, medications that inhibited HIV replication in blood would prevent the onset of AIDS.

Use of these new medication combination regimens (popularly known as drug cocktails) controlled HIV replication in infected people, often reducing the virus to undetectable levels. People with usually life-threatening AIDS-related illnesses were recovering at unprecedented rates, AIDS diagnoses began to plummet, and hospitals burdened by the number of HIV cases witnessed significant reductions of AIDS cases and deaths. A phenomenon called the Lazarus syndrome referred to people with AIDS who, expecting to die soon, living on disability, and having taken cash payments for insurance policies, suddenly found themselves leaving their sickbeds and returning to life. Hopes that these medications could eradicate HIV—essentially a cure for AIDS—were high, but continued attempts to do so have so far failed.

EPIDEMIOLOGY: STATISTICS AND POPULATIONS IN THE TWENTY-FIRST CENTURY

In 2006—the last year for data collection by the CDC—the estimated number of AIDS-RELATED deaths was 14,627, and the total number of people who have died of AIDS since the beginning of the pandemic reached 565,927 (CDC, 2006). Approximately 56,300 people in the United States became newly infected with HIV in 2006 (Hall et al., 2008). Research suggests that the number of new HIV infections per year peaked in the 1990s and has remained stable since the year 2000. Men who have sex with men (MSM) of all races comprise the majority of these new annual infections (53%), followed by heterosexual transmission (31%), injection drug users (IDU) (12%), and both MSM and IDU (4%). At the end of 2003, it was estimated that 1.1 million people were living with HIV infection (Glynn & Rhodes, 2005). Approximately a quarter of those HIV-infected do not know that they have HIV, and recent research suggests that the number of people living with HIV has been significantly underestimated (Hall et al., 2008).

Rates of infection among young men who have sex with men in the United States continue to rise. In the five years between 2001 and 2006, researchers observed an 8.6% increase in new HIV infections among MSM, and a 33% increase among MSM under 30 years of age (CDC, 2008). Men who have sex with men represent the only group that experienced an increase in HIV or AIDS diagnoses during this time. More alarming are statistics showing disparities in race and HIV transmission among youth: During 2006, more than 90 percent of newly infected MSM under 20 years of age identified as African American or Latino. HIV and AIDS disproportionately affect people of color in all categories. African Americans experienced approximately 45% of new HIV infections from 2001 to 2006: African Americans and Latinos had infection rates 7 and 3 times the rate of Whites, respectively (Hall et al., 2008).

Women represented 27% of AIDS diagnoses in 2000, compared to 8% in 1985, and HIV incidence has remained stable since it peaked in the late 1980s. African American women are disproportionately affected by HIV or AIDS: Those older than 13 represent 66% of AIDS cases among women and the majority of new HIV infections, while representing 12% of all women in the general population. All women are primarily infected through heterosexual sex. Black men and women have the highest mortality rates.

The global HIV pandemic is staggering. UNAIDS (2008) estimated that at the end of 2007 there were 33 million people living with HIV worldwide, a dramatic increase from the estimated 8 million reported in 1990. Following are other significant statistics about the pandemic:

• Approximately 67% of people living with HIV reside in sub-Saharan Africa.

• More than 2.5 million adults and children were infected with HIV in 2007.

• More than 25 million people have died from AIDS since 1981.

• There are approximately 11 million children orphaned by HIV in Africa.

• People under age 25 account for almost half of all new infections.

• Women represent half of...

Table of contents

• Title Page
• Copyright Page
• Dedication
• Foreword
• Preface
• About the Editor
• About the Contributors
• PART ONE - HIV BASICS AND SOCIAL WORK PRINCIPLES
• PART TWO - SOCIAL WORK PRACTICE
• PART THREE - SPECIFIC VULNERABLE POPULATIONS
• Author Index
• Subject Index