Lesbian, Gay, Bisexual, and Transgender Studies Commons^™

Editor's Note, Padraig O'Malley

New England Journal of Public Policy

On occasion, the New England Journal of Public Policy will devote an entire issue to consideration of a public policy matter of major importance. The AIDS epidemic is such a matter, with a likely impact of overwhelming consequence well into the twenty-first century. The epidemic raises fundamental questions regarding the nature of individual freedom, our responsibilities to others, the always delicate balance between private rights and the public interest, and society's obligation to its "out" groups — whose members it has stigmatized, discriminated against, ridiculed, and treated as less than full and equal citizens. Indeed, it requires us to ask …

The Acquired Immunodeficiency Syndrome In New England: An Epidemiological Review Of The First Six Years, Laureen M. Kunches, Jeanne M. Day

New England Journal of Public Policy

Between 1981 and 1987 — the six-year period following initial recognition of the acquired immunodeficiency syndrome (AIDS) — 1,475 cases were reported among residents of the six New England states. Of nearly 40,000 cases nationwide, 3.8 percent occurred among New England residents, though the region 's population represents 5.5 percent ofthe total United States population. The groups most affected include homosexual or bisexual men (65 percent) and intravenous drug users (20 percent). However, in the two southernmost states — Rhode Island and Connecticut — 32 to 40 percent of all cases have used intravenous drugs. In these states, the male:female …

The Quest For An Aids Vaccine, Robert T. Schooley

New England Journal of Public Policy

More than fifty thousand cases of AIDS have been reported in the United States since the disease wasfirst described in 1981. Many times this number of people are infected with human immunodeficiency virus (HIV), which has been identified as the agent responsible for the illness. The seriousness of the disease, coupled with the relatively rapid spread of HIV, has fueled the effort for development of an effective vaccine.

Much is now known about the life cycle of the virus, and about its structural components. This information, and information about methods of transmission of the virus, form the basis for a …

Understanding The Psychological Impact Of Aids: The Other Epidemic, Marshall Forstein

New England Journal of Public Policy

HIV has created two epidemics, one of disease, the other the consequence of the psychological response to that disease. Thus far, behavioral change is the only effective means of interrupting the transmission of HIV. The underlying psychological dimensions of the societal and individual responses to AIDS are discussed, with suggestions for how both rational thinking and irrational fears and anxiety contribute to the development of public policy. Examples are given of how short-term solutions to reduce anxiety may actually create long-term problems, potentially increasing the risk of transmission of HIV. Specific psychological mechanisms that contribute to the epidemic of fear …

Aids: An Overview, Loretta Mclaughlin

New England Journal of Public Policy

"We stand nakedly in front of a very serious pandemic, as mortal as any pandemic there ever has been," said Halfdan Mahler, director-general of the World Health Organization (WHO). "I don't know of any greater killer than AIDS, not to speak of its psychological, social and economic maiming. Everything is getting worse and worse with AIDS and all of us have been underestimating it, and I in particular. We're running scared. I cannot imagine a worse health problem in this century." When asked to compare AIDS to other epidemics, such as smallpox, that have infected and killed over the course …

Other Journeys, Phillip Dross

New England Journal of Public Policy

Phillip Dross was a writer. He was forty-three years of age when he died of AIDS in January 1987. Four years earlier, he had come to Newburyport, Massachusetts, to live and to face hard realities about himself — the legacy of a painful, confusing childhood in Florida, where he grew up, bouts with alcoholism, and his own shortcomings as a writer, for although he drove his friends to distraction talking about writing, he could not endure long hours alone, especially at the typewriter.

He made progress — the slow, plodding progress that characterizes the struggle within oneself that can be …

Neuropsychiatric Complications Of Hiv Infection: Public Policy Implications, Alexandra Beckett, Theo Manschreck

New England Journal of Public Policy

The human immunodeficiency virus (HIV) infects the central nervous system (CNS), causing symptoms in most persons with AIDS-related complex (ARC) and AIDS, and in a significant proportion of those classified as asymptomatic seropositive. The most common clinical syndrome secondary to CNS infection is known as HIV encephalopathy. When sufficiently disabling, HIV encephalopathy is known as AIDS dementia, and must be reported to the Centers for Disease Control as a case of AIDS.

AIDS dementia is a complex of cognitive, affective, behavioral, and motor symptoms which varies widely in its presentation. In some persons, cognitive impairment predominates, manifesting in a loss …

Aids And A-Bomb Disease: Facing A Special Death, Chris Glaser

New England Journal of Public Policy

In 1979 it was called "gay cancer," and it took the life of an acquaintance. Then "gay-related immune deficiency," or GRID, claimed neighbors, friends of friends, fellow activists. I began grief and death counseling with a segment of the population ordinarily concerned with life's ambitions and enjoyments: men in their twenties and thirties. Hospital visits and memorial services became more frequent.

By 1983, when it had come to be called AIDS, my own friends began to be affected. One was a man I dated in seminary, and I was devastated to learn of his illness only upon receiving a notice …

The Role Of Education In Aids Prevention, George A. Lamb, Linette G. Liebling

New England Journal of Public Policy

The severity of the current AIDS epidemic, combined with the lack of successful biological interventions, necessitates an active educational program as the primary intervention strategy. Health education theories abound, but relatively little definitive application of these theories has been made to the issues involved with HIV transmission: sexual behavior and the sharing of intravenous drug apparatus. Significant behavior changes have occurred in some people, but the consistency of the behavior change may be difficult to sustain. Thus, the authors suggest that health education should be delivered repeatedly in culturally acceptable language and format, by community leaders, and through many different …

Accounts Of An Illness: Extracts, Ron Schreiber

New England Journal of Public Policy

The following pieces, with an introduction by the author, are from a work in progress entitled John, to be published in the fall of 1988 by Hanging Loose Press and Calamus Books, New York City. In this work, Ron Schreiber, John's lover of nine years, writes a chronicle of a terminal illness from diagnosis to death.

Ron Schreiber's poems first appeared in Radical America's "Facing AIDS," a special issue devoted to AIDS.

Politics And Aids: Conversations And Comments, Steven Stark

New England Journal of Public Policy

As AIDS has emerged as a medical and social concern, it has become a political issue as well. In a series of interviews, we asked some leading authorities for their opinions on how AIDS is emerging as a political issue, particularly during the campaign of 1988. In all cases, the comments that follow represent an edited version of their remarks. Those participating were Ronald Bayer, director of the Project on AIDS and the Ethics of Public Health at the Hastings Center; William Schneider, resident fellow at the American Enterprise Institute; Jonathan Handel, a gay activist and a member of the …

The Clinical Spectrum Of Hiv Infections: Implications For Public Policy, Kenneth H. Mayer

New England Journal of Public Policy

The term acquired immunodeficiency syndrome (AIDS) is a definition developed by the Centers for Disease Control to explain the epidemic of immunosuppression first seen in the United States among gay and bisexual men and intravenous drug users in the early 1980s. It is now known that the human immunodeficiency virus (HIV) is the necessary agent for the compromise of the immune system which results in AIDS; however, there is a wide range of manifestations associated with HIV infection. Individuals with AIDS tend to have severe opportunistic infections or malignancies, and the vast majority ofindividuals die within two years after the …

Epidemiology And Health Policy Imperatives For Aids, Katherine Hill Chavigny, Sarah L. Turner, Anne K. Kibrick

New England Journal of Public Policy

The purpose of this article is to describe the statistics and epidemiological facts about the most virulent epidemic of our age, acquired immunodeficiency syndrome (AIDS). The discussion argues for broadened public policy to promote the surveillance of communities in order to enhance the effectiveness of data gathering for epidemiological reasoning, analysis, and control measures. To accomplish these goals, the essential characteristics of epidemiology are defined. The use of deductive and inductive reasoning is applied to describe and analyze known facts concerning the AIDS epidemic. Hypotheses are suggested from current amorphous and continually changing information to assist in further explanations of …

The Hiv Seropositive State And Progression To Aids: An Overview Of Factors Promoting Progression, Paul H. Black, Elinor M. Levy

New England Journal of Public Policy

We have considered factors that predispose to infection by the human immunodeficiency virus as well as the clinical consequences of infection. We have also reviewed what is known about the virological status of the asymptomatic carrier, particularly the female, and the fact that pregnancy may be a cofactor for progression of HIV disease in seropositive women. Additionally, we have discussed several other cofactors that may promote the progression of HIV infection. These include intercurrent infection, excessive use of recreational drugs and alcohol, malnutrition, and stress. With respect to stress, we have reviewed evidence indicating that certain personality factors, by buffering …

Hiv Antibody Screening: An Ethical Framework For Evaluating Proposed Programs, Ronald Bayer, Carol Levine, Susan M. Wolf

New England Journal of Public Policy

The acquired immunodeficiency syndrome (AIDS) poses a compelling ethical challenge to medicine, science, public health, the legal system, and our political democracy. This report focuses on one aspect of that challenge: the use of blood tests to identify individuals who have been infected with the retrovirus human immunodeficiency virus (HIV). In this article, we follow the terminology recently proposed by the International Committee on the Taxonomy of Viruses; that is, we use the term human immunodeficiency virus. This replaces the more cumbersome dual terminology of human T-cell lymphotropic virus type III/lymphadenopathy-associated virus (HTLV-III/LAV).

The issue is urgent: the tests are …

Hiv Antibody Testing: Performance And Counseling Issues, Michael Gross

New England Journal of Public Policy

This article assesses the performance of currently used tests for exposure to human immunodeficiency virus (HIV), the infectious agent associated with acquired immunodeficiency syndrome (AIDS); suggests, in view of that information, guidelines for counseling people seeking HIV antibody testing; and evaluates the claim that because antibody test results will effect behavior change in those who are infected, all members of high-risk groups should be tested.

HIV testing is likely to yield a high proportion of false-positive results in low-risk populations and infants born to infected mothers. A negative result may not establish freedom from infection in high-risk groups or the …

Ethical Issues In Aids Research, Michael A. Grodin, Paula V. Kaminow, Raphael Sassower

New England Journal of Public Policy

There is a need for carefully controlled and scientifically rigorous research studies of the acquired immunodeficiency syndrome (AIDS). The morbidity and mortality associated with AIDS patients and the public health concerns for control of this epidemic have distorted the usual process of research. The Institutional Review Board at Boston City Hospital is suggested as an appropriate mechanism for clarifying the distinctions between research and innovative therapies and for assuring the protection of this vulnerable population of research subjects. This article addresses ethical concerns relating to the time frame of research, drug and antibody testing, vaccine trials, and questions of justice …

The Aids Epidemic: A Prism Distorting Social And Legal Principles, Alec Gray

New England Journal of Public Policy

The AIDS epidemic is affecting American society in far-reaching and unexpected ways. It touches our institutions, our value systems, and our private lives. Social issues seem to change and become distorted by the epidemic 's prismlike effect. This article examines some of the major public health issues raised by the epidemic, ranging from testing to contact tracing and quarantine. It argues that while the civil rights of individuals may have to be sacrificed to stem the spread of the disease, those rights should not be abandoned unless a clear benefit to the public health would result.

Issues of discrimination in …

We Were There, Irene Burns

New England Journal of Public Policy

Irene Burns and Robin Macdonald are friends. Neither knew Mitchell Holsman or Gretta Wren. And neither did Mitchell or Gretta know each other. All four live and work in New York City — Irene as a telecommunications consultant; Robin as a paralegal; Gretta as an office administrator; and Mitchell as a fashion designer — and all four were friends of John Krieter. It was the love inspired by that friendship that brought them together to care for him. He died of AIDS on January 24, 1988.

Behavioral Change In Homosexual Men At Risk Of Aids: Intervention And Policy Implications, Suzanne B. Montgomery, Jill G. Joseph

New England Journal of Public Policy

With more than fifty thousand cases of acquired immunodeficiency syndrome (AIDS) diagnosed since its initial recognition in 1981 and no cure or vaccine in sight, experts agree that prevention is of the utmost importance. Yet very little research has investigated how existing social-psychological and health behavioral knowledge can be applied to the special circumstances of programmatic responses to AIDS. One of the central aims of our own research group has been to describe the psychosocial determinants of successful behavioral risk reduction among homosexual men, the largest affected group. This work is reviewed and its implications for the development of intervention …

Minorities And Hiv Infection, Veneita Porter

New England Journal of Public Policy

This article discusses a preliminary comparison of responses to AIDS in ethnic communities and their basis in previously established support systems. The importance of public policy and its connection to racism and cultural insensitivities are discussed as they relate to communities of color at risk. Particular attention is paid to problems of communication and to the ethics involving confidentiality.

Aids Initiatives In Massachusetts: Building A Continuum Of Care, Nancy Weiland Carpenter

New England Journal of Public Policy

The Health Resource Office was officially established within the Massachusetts Department of Public Health in August 1985 to coordinate policy, education, research, and service response to the AIDS epidemic, and to focus attention on the social and economic impact of the disease. The actual work of the office was begun earlier, in October 1983. This article reviews the activities of the Health Resource Office from October 1983 through June 1987 in allocating resources for AIDS and ARC programs and services. It then describes the conceptual model that evolved during this period for the continuum of services needed to reduce HIV …

Call To Action: A Community Responds, Larry Kessler, Ann M. Silvia, David Aronstein, Cynthia Patton

New England Journal of Public Policy

This article will examine the early formation of the AIDS Action Committee of Massachusetts, and what it has become. It will examine particular philosophical and organizational conflicts, some unique to AIDS organizing, that have influenced the direction the group has taken. It will try to tease out some of the factors that have made the organization successful in delivering services, providing education, and affecting city and state policy. It will also examine some of the unresolved conflicts that threaten the organization.

Covering The Plague Years: Four Approaches To The Aids Beat, James Kinsella

New England Journal of Public Policy

AIDS reporting has changed dramatically since 1981. But it was not until mid-1985, when Rock Hudson was diagnosed with the disease, that media outlets began playing the epidemic as a story of major proportions.

Because almost no major media institution embraced the AIDS story as an important issue, coverage of the epidemic was often the result of a reporter's initiative. Consequently, the connection the individual journalist had with the epidemic became a much stronger influence on what appeared in the news and on what Americans knew about the crisis than in any other recent major health story. This article examines …

The Big One: Literature Discovers Aids, Shaun O'Connell

New England Journal of Public Policy

Among the works discussed in this essay: An Intimate Desire to Survive, by Bill Becker; Epitaphs for the Plague Dead, by Robert Boucheron; A Cry in the Desert, by Jed A. Bryan; The World Can Break Your Heart, by Daniel Curzon; Safe Sex, by Harvey Fierstein; "The Castro," in Cities on a Hill: A Journey Through Contemporary American Culture, by Frances FitzGerald; As Is, by William M. Hoffman; Plague: A Novel About Healing, by Toby Johnson; The Normal Heart, by Larry Kramer; To All the Girls I've Loved Before: An AIDS …