Introductory Materials

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Since 1954 the Regional Oral History Office has been interviewing leading participants in or well-placed witnesses to major events in the development of Northern California, the West, and the Nation. Oral history is a method of collecting historical information through tape-recorded interviews between a narrator with firsthand knowledge of historically significant events and a well-informed interviewer, with the goal of preserving substantive additions to the historical record. The tape recording is transcribed, lightly edited for continuity and clarity, and reviewed by the interviewee. The corrected manuscript is indexed, bound with photographs and illustrative materials, and placed in The Bancroft Library at the University of California, Berkeley, and in other research collections for scholarly use. Because it is primary material, oral history is not intended to present the final, verified, or complete narrative of events. It is a spoken account, offered by the interviewee in response to questioning, and as such it is reflective, partisan, deeply involved, and irreplaceable.

This manuscript is made available for research purposes. All literary rights in the manuscript, including the right to publish, are reserved to The Bancroft Library of the University of California, Berkeley. No part of the manuscript may be quoted for publication without the written permission of the Director of The Bancroft Library of the University of California, Berkeley.

Requests for permission to quote for publication should be addressed to the Regional Oral History Office, 486 Library, University of California, Berkeley 94720, and should include identification of the specific passages to be quoted, anticipated use of the passages, and identification of the user.

It is recommended that this oral history be cited as follows:

To cite the volume: The AIDS Epidemic in San Francisco: The Response of the Nursing Profession, 1981-1984, Volume I, an oral history conducted in 1995 and 1996, Regional Oral History Office, The Bancroft Library, University of California, Berkeley, 1999.

To cite an individual interview: [ex.] Michael J. Helquist, "Journalist of the Early AIDS Epidemic in San Francisco," an oral history conducted in 1995 and 1996 by Sally Smith Hughes in The AIDS Epidemic in San Francisco: The Response of the Nursing Profession, 1981-1984, Volume I, Regional Oral History Office, The Bancroft Library, University of California, Berkeley, 1999.

Cataloging Information

THE AIDS EPIDEMIC IN SAN FRANCISCO: THR RESPONSE OF THE NURSING PROFESSION, Volume I, 1999, 241 pp.

Michael J. Helquist, (b. 1949), journalist, early AIDS reporting: relationship with Mark Feldman, one of the first AIDS casualties, activists; early AIDS care and Karposi Sarcoma (KS) Clinic; gay men approaching the health care system; the bathhouse debates; lesbian involvement in AIDS activism; San Francisco AIDS care and organizations, Shanti; the San Francisco Model; Randy Shilts; gay experience of loss and grieving because of AIDS.

Jeannee Parker Martin, M.D. (b. 1936) internist: medical education and move to San Francisco; involvement with BAPHR; gay-related sexually transmitted diseases before AIDS; first recognition of AIDS as a new syndrome; early theories about the new disease; caring for early AIDS patients and advising the gay community about risk; the bathhouse crisis; BAPHR's safe sex and blood donation guidelines; opportunistic infections associated with AIDS and typical disease progression of AIDS; BAPHR's activist role and links to other AIDS organizations; early drug therapies for AIDS; discord within BAPHR regarding bathhouse closure and antibody testing.

Helen K. Schietinger, (b. 1948), nurse and counselor at UCSF KS Clinic: education; early involvement with KS and Opportunistic Infection Clinic at UCSF; tension between AIDS community physicians and KS clinic; confidentiality issues; Bobbi Campbell, AIDS activist; KS Clinic as center of early AIDS research; Marcus Conant, M.D., KS Doctor; AIDS established as viral agent similar to Hep B; early infection control; UCSF task force on AIDS; establishment of AIDS Clinic at San Francisco General Hospital; Paul Dague and Psychosocial Services; KS biopsies; Lesbian and Gay Health Conference, 1982; specimen banking; Universal Precautions for AIDS; treatment of opportunistic infections in AIDS patients; early epidemiology of AIDS and the CDC; bathhouse debates; discussion of long-term partners of AIDS patients.

Introduction by Helen M. Miramontes, R.N., M.S., F.A.A.N., Associate Clinical Professor, Community Health Systems Department, School of Nursing, University of California, San Francisco.

Interviewed 1995-1996, by Sally Smith Hughes, Ph.D., for the San Francisco AIDS Oral History Series. Regional Oral History Office, The Bancroft Library, University of California, Berkeley.

Series Introduction

Helen M. Miramontes, R.N., M.S., F.A.A.N.

Nursing and medicine were confronted with very similar challenges in 1981 when HIV infection surfaced as a new unidentified disease in the gay communities of San Francisco, Los Angeles, and New York City. At that time it was not know whether this new phenomenon, named Gay-Related Immune Deficiency (GRID), was infectious and contagious, and if so, how it was transmitted. Were nurses, like physicians, at risk for becoming infected if they provided care, and would their families also be at risk for contracting this disease? There was much speculation and controversy as to the potential etiology of the new disease. Some people including members of the impacted gay community, proposed that this new disease was the result of recreational drug use, such as "poppers" (nitrates) and indiscriminate anonymous sexual activity, as demonstrated by the popularity of bathhouses in the gay community, and not due to an infectious organism. A few very knowledgeable physicians/ disease specialists, such as Don Francis, hypothesized that this new disease was caused by an infectious agent, probably a virus, and transmitted by means similar to hepatitis B. There was a lot of fear among health care providers about contagion, but there was also significant prejudice and discriminatory behavior because the new disease was identified in a population (gay/bisexual men) that was stigmatized by the larger society. Identification of the disease in people of color, especially African Americans and injection drug users, only exacerbated the biases, prejudices, and discriminatory behavior.

Many nurses demonstrated the same attitudes, beliefs, and behaviors seen in the larger society. I was a critical care nurse working in an intensive care unit (ICU) in a large teaching facility of a health maintenace organization in Santa Clara county. In the early years of the epidemic, it was not unusual to have two to three patients with Pneumocystis carinii pneumonia on ventilators in the ICU at any one time. Because some nurses avoided taking care of these patients, several of us volunteered to care for them on a regular basis. Inappropriate infection control techniques by health care providers, such as wearing gowns, masks and gloves for simple, nontransmissable activities, were the norm rather than the rarity. There were frequent breaches in confidentiality, not only among nurses but also among other health care workers. Similar situations occurred in San Francisco facilities as well.

Fortunately, some nurses rose above their fears and volunteered on a regular basis to provide the care and support required to meet the needs of these very ill and frequently terminal patients. Nurses also participated in community activities and organizations that were established to respond to this new disease. They creatively utilized the skills and expertise developed in caring for patients/clients in traditional settings, such as hospitals, clinics, and homes, to establish programs in community-based organizations. I saw nurses training volunteers to provide practical and emotional support, educating their peers and the public about the disease, advocating for compassion and resources, working with families impacted by this disease, and participating in policy development and political action that was vital to enhancing community response to this growing epidemic. Some of these nurses were also members of the at-risk community; others had family or friends as members of the gay community, and others became involved as a response to the hysteria and fears within the health care environment. But all demonstrated core values of nursing compassion and care.

Individual nurses, such as Cliff Morrison, Helen Schietinger, Gary Carr, and others, did not hesitate to become proactive, not only in care, but also in advocacy. These nurses did not wait for the nursing organizations to initiate a response to the epidemic. In fact, it was individual nurses who pressured and guided the nursing associations to develop position statements, to provide testimony before legislative bodies, and to mount positive responses concerning the epidemic, educating nurses as well as the public. Traditional nursing organizations, like traditional medical organizations, were not only hesitant, but resistant to becoming aggressively involved in the epidemic. It was a few nurses within the California Nurses Association who provided much of the expertise in education and training that formed the foundation of a very successful statewide education and training program for providers funded by the state for ten years. And it was these nurses who also lobbied for funds and provided expert testimony on numerous pieces of state legislation. These California nurses also provided leadership at the national level with the American Nurses Association on federal legislation. Some of these nurses provided leadership in clinical settings as well.

It was Cliff Morrison, as a clinical nurse specialist at San Francisco General Hospital, who designed and implemented a special unit for people with AIDS (Pas). This special unit, with integrated treatment, care, and support services, became the "gold standard" for inpatient care and was duplicated across the country. Later Cliff became the deputy director of a large Johnson & Johnson Foundation grant that successfully implemented HIV/AIDS care systems, similar to the San Francisco model, in eleven cities across the country.

Nurses also implemented other services in San Francisco community-based organizations. One of the nurses, Helen Schietinger, established the housing program of the Shanti Project. These early models of nurses responded creatively and effectively to the needs of the statewide nurse case manager for home care developed in the mid-1980s by a nurse, Peggy Falkner, in the State Health Department Office of AIDS. The Ward 86, San Francisco General Hospital, Outpatient Clinic is world renowned for the quality of care and the expertise of its staff, many of whom are nurse practitioners like Gary Carr. UCSF AIDS Clinic also has highly qualified nurse practitioners. Nurses were and are also significantly involved in AIDS Drugs Clinical Trials, including the San Francisco Community Consortium headed by Donald Abrams, M.D.

Nurses have always been involved with the poor and most vulnerable of a society's citizens. Each war, epidemic, and community disaster has had nurses in the middle of the crisis, providing a variety of services, care, and support. The AIDS epidemic is no different. In fact, in the early years before there was effective treatment, the caring of nurses was too often all that we could give. Often these nurses are not identified in the media or the history books; they are the "unsung heros." But it is often the nurse who sits with the patient and/or the family through the many critical episodes of AIDS; who counsels a person just receiving the positive results of an HIV test; who holds the hand of a dying person at night; who embraces a mother crying over the death of a son or daughter.

Some of us believe that everything in our professional lives, and sometimes our personal lives, has led us to this pandemic. The work has become a mission and we are committed to the long haul. Unfortunately, as of March, 1999, there appears to be no end in sight. The worldwide pandemic continues to rage out of control with 90 percent or more of new infections occurring in developing countries in Africa and Asia at the rate of 16,000 new infections per day. In some countries in the southern regions of Africa, 20 to 30 percent of the general populations are already infected. In this country, annual new infections have remained unchanged for several years and therapeutic drug treatments are not accessible to everyone who is infected. The need for nurses and nursing care continues to be vital and critical to our overall social response. Nurses will continue to participate and to use those nursing values and skills that best meet the need of people infected and affected by HIV/AIDS.

San Francisco, California

Series History

Sally Smith Hughes, Ph.D.

Project Origin

The idea for an oral history series on the medical impact of the San Francisco AIDS epidemic originated with Evelyne and David Lennette, virologists who have been following the history of the disease since its first recognition in 1981. In 1991, they began generously to provide support for interviews with physicians at the University of California, San Francisco [UCSF] and San Francisco General Hospital [SFGH] who were prominent in AIDS medicine in its earliest phase, 1981-1984. That series with twelve physicians, two dentists, and one epidemiologist--the AIDS physicians series--is now complete and available for research at the Bancroft and UCSF libraries.

The physicians' accounts made evident the critical role of nurses in AIDS history. It seemed imperative to capture their story. In 1994 we applied for and received a two-year award of $60,000 from the University of California Universitywide AIDS Research Program to interview ten nurses active in AIDS nursing in San Francisco. We gratefully acknowledge UARP's support of phase 2--the AIDS nurses series--of the AIDS oral history project. Jointly sponsored by the Regional Oral History Office of the Bancroft Library, UCB, and the Division of the History of Health Sciences, UCSF, it significantly expands oral documentation of the AIDS epidemic. As in the earlier series, the focus is on the first three years of the epidemic when San Francisco led the way in many areas of AIDS nursing and medicine.

Primary and Secondary Sources

To prepare for the interviews, I used the documents and publications described in the "Series History" essay appearing with the AIDS physicians series oral histories. In addition, interviewees in the nurses series in several cases provided documents from their personal files which added immeasurably to the oral account. I wish particularly to thank Angie Lewis, Grace Lusby, Michael Helquist, and Helen Schietinger for the time they took to select, compile, and donate documents for the historical record. These documents will be deposited in the AIDS History Project Archives at UCSF Library.

The Oral History Process

The oral history methodology used in this project is that of the Regional Oral History Office, founded in 1954 and producer of over 1,400 archival oral histories. The method consists of background research in primary and secondary sources; systematic recorded interviews; transcription, editing by the interviewer, and review and approval by the interviewee; deposition in manuscript libraries of bound volumes of transcripts with table of contents, introduction, interview history, and index; cataloging in national on-line library networks (MELVYL, RLIN, and OCLC); and publicity through ROHO news releases and announcements in scientific, medical, and historical journals and newsletters and via the UCSF Library web page (http://www.library.ucsf.edu/). The reader interested in the pros and cons of the oral history method is referred to the "Series History" in the AIDS physicians volumes.

Oral histories in the AIDS nurses series ranged in length from two to ten hours. Details of the interview process with specific individuals may be found in the interview history preceding each oral history transcript. The oral history volumes, tapes, and supporting documents will be available for research in the AIDS History Project Archives at UCSF Library.

Emerging Themes

ROHO's AIDS series consists to date of twenty-five oral histories on the medical and nursing response to the San Francisco AIDS epidemic in its first three years. There is a wealth of information on its medical, scientific, political, social, and personal aspects. Although it is impossible to do justice to this collection in a brief summary, the following comments suggest in broad outline the richness of the thematic material.

These oral histories with nurses continue the themes running through the physicians series--individual "preparedness" for the epidemic in both professional and personal senses; organizing medical, nursing, and social services in the face of a new and fatal disease; the epidemic's impact on the careers and emotional life of health care providers. Compared to the oral histories with physicians in phase 1, what is generally different about the oral histories with nurses is their portrayal of a day-to-day, hands-on, in-the-trenches engagement with the people most affected by the epidemic--the people with AIDS. Some of this distinction is due to the different requirements of the two professions. Put simplistically, physicians diagnose, treat, and prescribe for patients on an episodic basis. Their contact with patients, particularly in an incurable disease such as AIDS, may run for years, even decades, but is broken up into episodic bedside, clinic, or office visits.

Such is not the case with hospital nursing. As long as the patient is hospitalized, a nurse or nurses is caring for the patient in an immediate, personal, and ongoing fashion. The highs and lows of the nurse-patient relationship are difficult to escape, as these oral histories indicate. Because nursing contact with patients tends to be more sustained and personal than is physicians', it is often more of a struggle to sustain a proper balance between personal involvement and professional detachment. Some of the nurses in these volumes speak of "burnout" as a consequence of over-commitment and of the measures they take to lessen or escape it.

The role of the gay community in AIDS activities is another persistent theme. The fact that six of the ten interviewees in this series are gay or lesbian is not incidental. In most cases, their sexual orientation was a basis for their original engagement in the epidemic, which to this day in San Francisco affects gay men in larger numbers than any other single demographic group. AIDS in the years covered by this project was widely perceived as a "gay" disease. The nurses in this series had the same perception and in many cases chose AIDS care as a way of assisting members of "the community", meaning the articulate and organized gay and lesbian community centered around, but not limited to, Castro Street in San Francisco. Thus it is inevitable, as these oral histories vividly demonstrate, that the history of AIDS in San Francisco, is inextricably intertwined with gay culture.

Yet another important theme is the impact of the epidemic on the stature of nursing. Although AIDS in San Francisco has always been a multidisciplinary activity, involving health care professionals, social and community workers, government agencies, etcetera, the interviews show nurses taking on more responsibilities, devising innovative services for holistic AIDS care, and assuming a stronger "voice" in the medical hierarchy. For example, it was nurses who organized and ran (of course with physician oversight), and continue currently to run the inpatient AIDS unit, Ward 5B (now 5A), at San Francisco General Hospital. Nurses also played a major role in structuring comprehensive patient management and community support systems which are a critical part of the multidisciplinary model of AIDS care for which San Francisco was known in the early epidemic. I hope the reader will be prompted to read on and to take from these oral histories much more than I have suggested here.

Locations of the Oral Histories

The oral history tapes and bound volumes are on deposit at UCSF Library's AIDS History Project Archives. The volumes are also available at the National Library of Medicine, the Bancroft Library, UCLA, and other manuscript libraries.

Acknowledgements

We are grateful to Helen Miramontes, Associate Clinical Professor in the Community Health Systems Department at UCSF School of Nursing, for writing the introduction to the AIDS nurses oral history series. Ms. Miramontes has been involved with AIDS activities at the federal state, and local levels. At UCSF, she served as Deputy Director of the International Center for HIV/AIDS Research & Clinical Training in Nursing. In 1996, she was named to the Presidential Advisory Council on HIV/AIDS.

We also wish to thank editorial assistants Grace Robinson, Julia Rechter, and Celeste Newbrough, and production manager Shannon Page for their efforts in finalizing the oral history volumes. I am grateful as always to Willa Baum, Regional Oral History Office director, for her oversight and helpful comments.

We gratefully acknowledge the support of University of California Universitywide AIDS Research Program, award # R94-SF-083.

Note Regarding Terminology

In this project, both interviewer and interviewee sometimes use the term "AIDS" to refer to the disease before it had been officially given this name in the summer of 1982. "AIDS" is also used to designate the disease which in recent years has come to be known in scientific and medical circles as "HIV disease". In these oral histories, the term "AIDS" has been retained, even when its use is not historically accurate or in tune with contemporary technical terminology.

Regional Oral History Office
The Bancroft Library
University of California, Berkeley

The San Francisco AIDS Oral History Series

Phase 1: The Medical Response, 1981-1984

VOLUME I

Selma K. Dritz, M.D., M.P.H, "Charting the Epidemiological Course of AIDS, 1981-1984"

Mervyn F. Silverman, M.D., M.P.H., "Public Health Director: The Bathhouse Crisis, 1983-1984"

VOLUME II

Donald I. Abrams, M.D., "The KS Clinic, Lymphadenopathy and AIDS-Related Complex, and the County Community Consortium"

Marcus A. Conant, M.D., "Founding the KS Clinic, and Continued AIDS Activism"

Andrew A. Moss, Ph.D., "AIDS Epidemiology: Investigating and Getting the Word Out"

VOLUME III

Arthur J. Ammann, M.D., "Pediatric AIDS Immunologist: Advocate for the Children"

Paul A. Volberding, M.D., "Oncologist and Developer of the AIDS Clinic, San Francisco General Hospital"

Constance B. Wofsy, M.D., "Infectious Disease Physician, AIDS Educator, and Women's AIDS Advocate"

VOLUME IV

Donald P. Francis, M.D., D.Sc., "Epidemiologist, Centers for Disease Control: Defining AIDS and Isolating the Human Immunodeficiency Virus (HIV)

Merle A. Sande, M.D., "Infectious Disease Specialist: AIDS Treatment and Infection Control at San Francisco General Hospital"

John L. Ziegler, M.D., Ph.D., "Oncologist: Kaposi's Sarcoma and AIDS Research in San Francisco and Globally"

VOLUME V

Herbert C. Perkins, M.D., "Director, Irwin Memorial Blood Bank: Transfusion AIDS and the Safety of the Nation's Blood Supply"

VOLUME VI

Deborah Greenspan, D.D.S., D.Sc., "Oral Manifestations of AIDS"

John S. Greenspan, D.D.S., Ph.D., "AIDS Specimen Bank, UCSF"

VOLUME VII

Warren Winkelstein, Jr., M.D., M.P.H., "AIDS Epidemiology at the School of Public Health, University of California, Berkeley"

IN PROCESS

Jay A. Levy, M.D., Virologist, UCSF: Isolation of the AIDS Virus

Phase 2: The Response of the Nursing Profession, 1981-1984

VOLUME I

Michael J. Helquist, "Journalist of the Early AIDS Epidemic in San Francisco"

Jeannee Parker Martin, R.N., M.P.H., "The AIDS Home Care Program of Visiting Nurses & Hospice of San Francisco"

Helen K. Schietinger, R.N., M.F.C.C., "Nurse Coordinator of UCSF's First AIDS Clinic"

VOLUME II

Gary Stephen Carr, R.N., Ph.D., F.N.P.-C., "Nurse Practitioner at the AIDS Clinic, San Francisco General Hospital"

Angie Lewis, R.N., M.S., "Nurse Educator in the San Francisco AIDS Epidemic"

VOLUME III

Diane Jones, R.N., "First Wave of the Nursing Staff on the AIDS Ward, San Francisco General Hospital"

Clifford Morrison, M.S., M.N., R.N., F.A.A.N., "Organizer of the AIDS Ward, San Francisco General Hospital"

VOLUME IV

Gayling Gee, R.N., M.S., "Head Nurse at the AIDS Clinic, San Francisco General Hospital"

Grace Lusby, R.N., M.S., "Infection Control Practitioner, San Francisco General Hospital"

Diane Miller, M.P.H., "AIDS Policy and Administration at San Francisco General Hospital"

Phase 3: The Response of Community Physicians, 1981-1984

VOLUME I

Ric Andrews, M.D., Psychiatrist, "Psychiatrist and Advocate for Gay Medical Causes in the Early AIDS Epidemic"

James Campbell, M.D., Internal Medicine, "AIDS Clinician and Medical Educator"

James Groundwater, M.D., Dermatologist, "Dermatologist Treating the First Kaposi's Sarcoma Patient Diagnosed in San Francisco"

VOLUME II

Paul O'Malley, Communicable Diseases, "AIDS and the Hepatitis B Vaccine Trial in San Francisco"

Stephen Follansbee, M.D., Infectious Disease Specialist, "Infectious Disease Practitioner in the Early AIDS Epidemic"

VOLUME III

Robert Bolan, Jr., M.D., General Practitioner, "Medicine, Activism and the Gay Community in San Francisco"

William Owen, Jr., M.D., Primary Care, "AIDS Clinical Practice in the Private Sector"

Interview History

by Sally Smith Hughes

Michael Helquist is a journalist who was interviewed for the oral history series at the suggestion of Helen Schietinger because of his critical role as a link between the world of medical science and the gay community. His oral history provides an overview of community reaction to the early epidemic and also brings it down to the personal by describing its effect on his own life when his partner succumbed to AIDS. Helquist's articles in the gay and straight press and his regular column "The Helquist Report" in The Advocate provided the gay community, which the epidemic in San Francisco hit first and hardest, with practical information about AIDS. Baffled and afraid of a disease which the biomedical profession could not adequately explain--the causal virus was not definitively identified until 1984--those touched by the epidemic sought information in language that they could understand and which respected community mores. Helquist's journalism filled the bill on both counts.

In the interviews, Helquist tells of his friendship and later partnership with Mark Feldman, one of the most visible of the first one hundred or so individuals diagnosed with AIDS in San Francisco.

Helquist's memory of his lover, who eventually died of AIDS, is a feature of the interview. He tells of accompanying Feldman to the Kaposi's Sarcoma Clinic at UCSF where a patient faced a battery of specialists and laboratory tests at a time when little was known about disease progression or the causal agent. Helquist rekindled his memory of this trying time by referring repeatedly during the interview to Feldman's diary which contains a day-by-day account of his experience of AIDS.

Hinting at his longstanding rivalry with Randy Shilts, the San Francisco Chronicle reporter on AIDS and author of And The Band Played On,

Helquist contested Shilts' reputation as the journalist of the epidemic. Although Helquist acknowledges Shilts' contributions to AIDS journalism, he points out that his own articles and those of other journalists played a substantial and sustained role in reporting the San Francisco epidemic.

Helquist also made a point of acknowledging the prominence of women in early AIDS activities. They not only contributed to all aspects of health care but their presence provided gay men with a model of compassion and emotional support which in his opinion helped to form a more inclusive gay and lesbian community.

The Oral History Process

Helquist's pleasant home in San Francisco's Noe Valley was the location of a single interview session on March 25, 1995. Prior to the meeting, he had sent his curriculum vitae and, most helpfully, a letter enumerating the topics he wished to cover in the discussion, which indeed we did. Helquist spoke feelingly of his experiences of the epidemic in several capacities: as a freelance reporter, as a partner of a person with AIDS, and finally as one who at the time of the interview had experienced a bout of Pneumocystis carinii pneumonia, a marker of AIDS.

The edited transcripts were sent to Helquist who returned them lightly edited. He also supplied a carefully organized portfolio of his papers, a few of which have been placed in the appendix. The remainder have been deposited in the AIDS History Project Archives at UCSF Library.

This oral history provides an insight into the gay community's early response to the AIDS epidemic, by a reporter who, although not formally trained in biomedicine, took on the responsibility of helping to interpret for his community a new and devastating disease.

The Regional Oral History Office was established in 1954 to augment through tape-recorded memoirs the Library's materials on the history of California and the West. Copies of all interviews are available for research use in The Bancroft Library and in the UCLA Department of Special Collections. The office is under the direction of Willa K. Baum, Division Head, and the administrative direction of Charles B. Faulhaber, James D. Hart Director of The Bancroft Library, University of California, Berkeley.

July 1998

Regional Oral History Office
The Bancroft Library
University of California, Berkeley

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I Autobiography

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Arrival in San Francisco, 1980, and First Jobs

Hughes

Michael, start, please, with a thumbnail sketch of yourself.

Helquist

I guess the relevant sketch would begin probably early in 1980, when I moved to San Francisco from Oregon, where I was born and raised. Initially, I came here because I just wanted to live in the city. It wasn't just because this was a gay mecca of the time; it was also a big city for me, and I wanted to be part of the excitement.

My first job in the city was at UCSF in the personnel department. I was there for a couple of years [1980-1982]. Then I moved to another department, Extended Programs in Medical Education [EPME], as editorial assistant, 1982-1984. I was fortunate to have someone in the department, Dr. Barbara Gerbert,

who is still at UCSF, who really wanted to be very supportive of my writing, which was at a stage of my just talking about wanting to write and not sure what I meant.

And jumping ahead a little bit, I was fortunate that she chose to be a sponsor for me. After I stopped working at the university, Barbara paid me a stipend for about six months to support my writing so I could get started on it, which was a major boost.

Hughes

What kind of writing?

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Helquist

We were thinking initially that I would write a book, and we thought that it might be with an AIDS theme, because my involvement with AIDS had begun in the fall of 1982. I continued working at UCSF until the summer of 1983, and then she provided funds to support me. I did not complete a book at that time; I became a free lance reporter and journalist, and published articles. In the years following, I edited several books and other publications.

Hughes

Mainly on the epidemic?

Helquist

Yes. I really was at the right time at the right place. I had been working a little bit, writing for one of the gay newspapers, Coming Up!,

here on various subjects, and initially, I wanted to do a history of Valencia Street, including an oral history for whatever remained of Valencia Street as it was developing. At that time, Valencia Street seemed like it was going to be the next area to "happen" in the city, which didn't quite pan out.

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II The AIDS Epidemic

Writing about and Working in AIDS

Helquist

Part of the reason why Valencia Street was important to me was that while working on the history I made my first contact that got me into AIDS writing. I happened to be one day walking by New College, which is located on Valencia, and happened to just start talking to someone on the street who worked there, and this person was Mark Feldman. Mark was probably one of the first hundred in the city to be diagnosed with AIDS.

When I met Mark, he hadn't been diagnosed, but we struck up an intermittent friendship that became quite a bit more developed, especially when he was diagnosed at the end of November in 1982. It was really my association with Mark that also gave me a boost in writing, because he was one of those early people who wanted to be public about having AIDS. So I ended up interviewing him and publishing the interview,

interviewing his parents, and others who were in his new life that revolved around AIDS.

So it really gave me a push and a start for writing, which I continued with until 1987. My writing on AIDS was for a number of papers, both gay community publications nationwide and publications like the American Medical News, Ms Magazine and the San Francisco Bay Guardian.

So I was very much involved in

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AIDS writing and for San Francisco, I wrote some of the very earliest articles about issues like the HIV connection with substance abuse, which wasn't very prominent in people's minds, and some about the involvement in AIDS of women in the helping professions.

There was this initial phase of doing a lot of writing and getting very focused on it, which also led me to do consultant work for the CDC [Centers for Disease Control] and for the World Health Organization [1987-1988] just when WHO [World Health Organization] was beginning their AIDS program [Global Programme on AIDS]. My involvement kept increasing each year: participating and presenting at the International Conferences on AIDS and writing for international publications.

My consultant work with WHO, CDC, and several AIDS organizations led to a job in Washington D.C. The federal government, through the state department, funded a five-year, $15 million AIDS project designed to assist developing countries to develop effective HIV prevention programs. This program, begun in 1987, was called AIDSCOM for AIDS communication, since we focused on using communication channels: TV, radio, print, person-to-person, to support AIDS prevention. I worked for a non-profit contractor; my position was initially as program officer and editor, and I primarily focused on the English-speaking countries of the Caribbean.

I continued working in D.C. until November of 1992, and then I was able to bring my part of the job to San Francisco and work here for the final year of the project. In the spring of 1993, I was diagnosed with AIDS due to low T-cell counts. In October of the same year, I had my first opportunistic infection, Pneumocystis pneumonia. Soon after I retired due to AIDS-related disabilities. And that pretty much brings us up to date.

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First Encounter with the AIDS Epidemic

Hughes

Do you remember how you first learned of the epidemic?

Helquist

It was either reading one or two of the early articles that had been written--

Hughes

Here?

Helquist

Here, in the gay papers. The person who had started writing the first personal experience AIDS column in the San Francisco Sentinel, Bobbi Campbell, was a nurse at UCSF. It was both that column and, in the very early days, what most people heard about or saw were these posters that were posted in the window of the drugstore at 18th and Castro Streets--which today is Walgreen's and used to be Star Pharmacy. Those were photos of KS [Kaposi's sarcoma] lesions, with advice to "check yourself daily for lesions."

Hughes

Bobbi Campbell's foot, right?

Helquist

Oh, yes, it probably was.

Hughes

Was there more than one?

Helquist

More than one poster?

Hughes

I mean, of different types.

Helquist

I think probably there was one with the photo, and then an accompanying one with more information, written information. But even then, it was still so early in the epidemic that you were kind of aware of it, but it wasn't top of mind. It quickly got there, but for a while, it was just this weird sort of thing going on, which of course initially was called the gay cancer. It took awhile for people to absorb this new information and to realize how it affected their lives.

We know AIDS became more real and personal for the "general population" once Rock Hudson's diagnosis and death were revealed. For the gay population, we began to have similar experiences, but much earlier. For example, when Patrick Cowley, the San Francisco musician and producer, died of AIDS in

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November 1982, the community was shocked and saddened. AIDS was becoming more real and more of a threat.

Defining the Disease

Hughes

How did people feel, you included, of course, in having the disease labeled "gay cancer" and defined as a disease of homosexuals?

Helquist

I think initially, we accepted it as, This seems to be something that's only hitting gay men; there is a cancer involved; shorthand, it comes out gay cancer. There were others who were certainly quicker than I was to say, Wait a minute, we're looking at trouble here. It was very clear to them that power rested, as it always does, with people who name an event or a disease.

At that time [1982-1983], there were no national mainstream meetings about AIDS. This was certainly long before any of the AIDS conferences, the international ones.

But there were gay-lesbian health associations, and there was definitely a time when that group, which included influential people in the medical field, made a very definite effort to say, "We have to change this name."

Then it became clearer what the issues were. But also during the early days, we didn't think of it as much more than cancer. I mean, KS is what was on everyone's mind. You would get into a routine of every morning while, say, taking a shower, where you would be looking for spots, and being sure to look on the soles of your feet, not just wherever else.

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Hughes

So the other infections that are now recognized to go along with AIDS were not very prominent in people's thinking? PCP [Pneumocystis carinii pneumonia] was the first condition reported in the medical press.

Helquist

Right.

Hughes

And yet, PCP doesn't seem to be the thing that caught people's attention. Why was that?

Helquist

Maybe because the gay cancer, the lesions, were so dramatic and visible, and had all the stigma, whereas the pneumonia, at least, sounded like something a little bit more familiar. Gay men thought, "Okay, it's a different kind of pneumonia, whatever that means. I can't say the word [Pneumocystis] anyhow." If you're sick with pneumonia, you're sick in bed or in the hospital or whatever. With KS, you could walk around and people could see you, and it was much scarier for that reason. But there were definitely people who were dying with KS and Pneumocystis even in those early days.

Mark Feldman

Treatment at UCSF

Helquist

I am trying to find a reference here [leafs through journal] in this diary of Mark Feldman's. He gives the date in here of when Pat Crowley, who used to be a roommate, died. I think he said that Pat died of KS and Pneumocystis. [tape interruption]

This journal of 1982-83 of Mark Feldman's provides a picture of when someone would go for medical care, or at least when he did. And looking back on it now, he probably could have been diagnosed maybe a full year before he was--knowing what we do today. There were enough weird symptoms coming on that were unusual, but he didn't actually seek specific medical advice until right before Thanksgiving in 1983.

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The first mention that he makes is seeing Don Abrams

at UCSF. At that time, Dr. Abrams noticed the candidiasis in his mouth, and he directed Mark, "Go look in the mirror and see what I'm talking about." That scared Mark, and he looked in the mirror, and he said, "Oh, you want me to look at these two purple splotches in my mouth?" And Don said, "Well, no. Let me see." So it was Mark who actually saw the KS lesions first.

Then he writes in his journal about the really awful days that he went through, not just hearing the news, but on that very first day, he was up at UC Med Center from ten a.m. to four p.m., and he went from Abrams' office to Dr. [Francine] Lozada, who is dermatology--

Hughes

No, dentistry, oral lesions.

Helquist

Right. She took one look in his mouth and said, "KS." And then she biopsied it. He was having all these tests done, and he was walking back to Dr. Abrams' office, and his mouth filled up with blood, so he had to go back to Lozada and eventually get it cauterized to stop the bleeding. Some of the difficulty Mark had was with managing his own health care, from offices to clinics. Kind of being on his own--someone wasn't walking him through the system and that was very hard. It was very difficult for people to make sense of the diverse health care needs and the several providers, especially since most of us had pretty limited experience with the medical system before this.

Identifying Symptoms of AIDS

Hughes

Did you talk to Mark about why he had not done something sooner about the symptoms he was experiencing?

Helquist

I'm not sure why he didn't check them out, because he said that he was feeling so much weaker, that he was losing hair, that

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over a six-month period, he had lost twenty pounds. And he may have had those monitored by a physician a bit, but there was not a clear connection to what we now call AIDS.

Hughes

He wasn't thinking AIDS, or at least not admitting to it?

Helquist

Somewhere in between, I would think.

Hughes

Was there enough information out there that a person, such as Mark, who didn't have a medical background, would know that KS, weight loss, and so on could mean that something was really wrong?

Helquist

I think the awareness was of these lesions: "KS lesions--we need to look for those, and I hear there's some pneumonia connected with it." But there wasn't any comprehension of HIV disease as we understand it today, and weight loss wouldn't necessarily have been linked to it, nor would hair loss or fatigue or oral thrush. So I think he probably partly took the approach that there were all these things going on in his body, and they were distressing. But he had a very active life in the community, and he was involved in lots of different things such as politics, the lesbian/gay synagogue, and his own business ventures. I think he sort of kept on with that busy schedule with all this in the back of his mind.

The Kaposi's Sarcoma Clinic, UCSF

Accompanying Mark

Hughes

Well, talk, of your perception of the KS Clinic and how it was perceived by the community.

Helquist

I don't know if I had read much about it before my first visit there. But I remember accompanying Mark on one of his visits, and this must have been the first couple of days of December, 1982. I remember sitting out in the hallway of the Ambulatory Care Clinic with him, waiting for the nurse to come. The nurse came out, who happened to be Helen Schietinger, and Mark introduced her. [laughs] I think he said, "I'd like you to meet my vampire. All she does is take blood from me." [laughter]

Hughes

So he'd obviously been to the clinic before.

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Helquist

Yes, he'd been there before, and was just starting to get into the whole medical and research system of what was involved.

Hughes

Did you actually go with him from his home to the clinic?

Helquist

Yes.

Hughes

What did he think about going to the clinic?

Helquist

Well, I think there was such a huge mix of emotions. He talks about it in his journal, which isn't so much focused on the clinic, but just everything going on in his life. Sometimes he really wanted to play for the sympathy, and sometimes he really wanted to go for the drama. And at other times, he was this scared little boy who didn't know what was happening, and having all these people do tests on him. [looks through journal] This is when he saw Don Abrams.

There's one mention in here that was sort of touching about when he went up to either the clinic or the med center. He said he needed to go on a merry-go-round of tests at UC Medical Center, and then in parenthesis he says, "Where the last of Nazi operators devise new tortures for little Jewish boys." [laughter]

Hughes

Who was he referring to?

Helquist

Anyone who was poking him.

Research on Patients

Hughes

Helen told me that the intake interview, the first interview when one presents oneself at the clinic, was really comprehensive.

These early patients were really research subjects as well as patients. They were there of course for diagnosis and whatever treatment was available, but they were also to be studied, to try to find out what was going on.

Helquist

Right.

Hughes

Now, were you and Mark aware of the research dimension, which would explain the massive bloodletting?

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Helquist

Yes. Well, he had the continual blood-giving, but he also talks about having a colonoscopy, endoscopy, sigmoidoscopy, all these tests which maybe at that point were eventually helpful to him for symptom relief or something, but in retrospect probably had more relevance from the research side. There was also a feeling pretty early on, I think with him and when I was with him, that we don't know much about what this disease is, and research is really necessary. So if this is the way we can contribute, then we'll be part of the research. The notion of patients being their own advocates had barely become present in the gay community. Activism about drug access and general medical care was a few years off.

Hughes

There was no hesitation--

Helquist

No, there wasn't quite the same feeling that developed later, and that is certainly present today, of patients saying, "I'll do this for research, but I'm not willing to do that, and it's my choice. I don't want that procedure again." There wasn't much a sense of that choice. Mark was overwhelmed by the news of his multiple diagnoses, and just kind of did what people told him to do, which was probably appropriate.

Hughes

What was the actual procedure in the clinic?

Helquist

I think I may have waited for Mark outside, so I think I really wasn't in the clinic long enough to know.

Hughes

Were you included in any of the discussions with the physicians? Or Helen, or anybody?

Helquist

Not in that very early stage. After awhile, when Mark was hospitalized at SF General, or when he was at the UC Med Center, then I was sort of included. I was his--what? I don't know--one of his monitors of what was going on. In the early '80s it was not very common for a gay man to accompany his partner, the patient, during medical consultations and procedures with physicians and technicians.

Writing about the Medical Aspects of AIDS

Helquist

I guess it was a very fortunate connection in a lot of ways for Mark and me and for the larger community. Here I was wanting to write; here was someone who had a story to tell, and was kind of desperate to tell what was happening. I hadn't come from any medical background whatsoever, and I needed to do my research to

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even know what some of these doctors were saying. It got me started in my own medical writing, which in the very early days in the gay press was really very basic. I believed then that it was important for people to know some of the medical jargon of what was being said, and not just talk about "the gay cancer" or "that weird pneumonia." There were specific efforts that I and others made in print of telling people how to pronounce Pneumocystis, just kind of getting your tongue over that and getting familiar with it.

Hughes

How did you educate yourself?

Helquist

Initially by reading articles, most of which were in the gay press, a lot coming from New York. And then reading what was in the MMWR [Morbidity and Mortality Weekly Report] from CDC, the little bit that was there. I spent a lot of time with a medical dictionary as I was trying to write and explain things. And I began to conduct a lot of library research regarding medical conditions that were known in the literature, even if the link to AIDS hadn't been made yet.

Hughes

Did you have any friends, physicians in the community?

Helquist

Not at that point. I only started to once I started interviewing them, and got to know them, and certainly learned more as a result. In those early days, the physicians were very accessible, and I was able to interview Drs. [Paul A.] Volberding, [Marcus A.] Conant, [Donald I.] Abrams, [Jay A.] Levy, [Constance B.] Wofsy, and others.

Hughes

So you saw your role as an educator?

Helquist

Yes, with my writing, I was. At first, I wasn't really sure what it was, because it was new to me. It was new to be writing and publishing. But clearly, I began to feel more like an educator talking about the different treatments, doing some of the initial research.

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The Gay Community as a Source of Medical Information

Helquist

One of the interesting things that I think happened in the early days was the fact that so many people in the gay community started doing their own literature research and sending it to all these physicians. Anyone who was recognized for doing AIDS research work, whether it was CDC, NIH [National Institutes of Health], or local doctors, there was this very ambitious trading of information. Because, of course, a lot of these docs didn't have the time to go search some of these things out, and there was just an awful lot of sharing of information. Actually, I guess it was more one-sided. It was the gay community funneling information into the health care system.

Hughes

Give me an example of the sorts of things that you would funnel.

Helquist

Hmm. I guess most of the activity was about treatments.

In those days, treatment for AIDS conditions was very new, very fluid. Although there were, of course, established treatments for skin cancers and some lung infections, this new virus put established practices in a very different context. Many of the diseases had seldom been seen in young men, and the many concurrent infections made all treatment approaches more complicated. So a lot of the early collaboration between the gay community and researchers and physicians focused on new treatment possibilities, using exisiting drugs in a new way, or using alternative or natural therapies.

This was a very dynamic time. Many gay men were regularly sending information to the researchers at the CDC and NIH, as well as to physicians in private practice everywhere in the country. Some early contributions that I'm aware of focused on information about possible gay lifestyle activities that might contribute to an immune system breakdown.

For example, much of the literature review and research about the popularly used "poppers" (amyl nitrate)--used to get a quick high on the dance

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floors or during sex--came from gay health activists. Much of the early work on whether AIDS was an autoimmune response was reported in the gay media of New York and San Francisco. And there were some ground-breaking efforts regarding the link between AIDS and substance abuse, the possible usefulness of a photochemical compound called DNCB as a topical treatment and activator of the immune system.

There were also several false leads promoted by the gay media, primarily from the publisher of the New York Native newspaper. The possible connections between AIDS and the swine flu vaccine, AIDS and syphilis, and many others were strenuously promoted in this newspaper.

Hughes

Now, locally, was it the group at San Francisco General and at the KS Clinic?

Helquist

Yes, locally, there were physicians at SF General (Volberding, Abrams, Wofsy) who listened closely; also, many private practice physicians like Bob Bolan, Wally Krampf, Steve Mehalko, and Steve Follansbee.

The active communication also had several other benefits: researchers became more accustomed to appreciating the input from gay men who weren't health professionals. Several professional relationships and friendships were formed between the physicians and a great number of gay men. This helped set the foundation of cooperation that we are still seeing today.

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Hughes

In the community?

Helquist

Individuals in the community were generally quite willing to work with anyone who could help; we were all in a crisis mode. Also, the organization Bay Area Physicians for Human Rights (BAPHR) was a focal point for all the concerns of the community, both medical and social.

##

Hughes

BAPHR was taking a rather active political role as well.

Helquist

Yes, it was. Many physicians--primary care, specialists, and psychiatrists--involved with BAPHR were sought for assistance and guidance, not only by the gay community, but also by government offices and elected officials. And some of the BAPHR members felt quite strongly about the civil liberty issues involved. BAPHR members were very active in the gay bathhouse controversy, fighting general discrimination against their AIDS patients, protecting patients' rights in research studies, and in formally advising the Public Health Department. Not only were many of these doctors struggling with the new medical challenges brought on by AIDS, but they were being drawn into the very contentious world of San Francisco politics.

The Bathhouse Episode, 1983-1984

Physicians Enter City Politics

Helquist

The whole political dimension of the epidemic was coming in, not only the politics of trying to get any federal research money, but the whole politics around the bathhouses here in the city. It was a little unusual, I think, for how much the physicians got pulled into it or walked into it. And a number of them got very bruised by the experience.

Hughes

Well, talk about that.

Helquist

Although physicians were involved in many AIDS political issues, the most troubling and divisive was the gay bathhouse debate. The city government was very much involved, primarily the office of the mayor, Dianne Feinstein, and that of the Director of the Public Health Department [1977-1984], Dr. Mervyn Silverman.

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Feinstein has a political history of opposing anything sexual; she also had a genuine commitment to preventing the spread of AIDS in her city. She wanted the baths closed, and she used ethically questionable means to make that happen. Silverman was bucking the pressure from Feinstein's office to close the baths. He consulted with a group of hospital and community physicians about the bath closure issue. This group met regularly and tried to determine what action was necessary for HIV prevention--and for political realities.

In addition to the politics of government officials, there was also the gay community politics. Many physicians became embroiled in both. And, of course, the fears, the biases, and the ambitions of the physicians added to the overall context of the debate. Some of the physicians were publicly castigated for their positions on the gay baths. The problems were even more difficult for the gay physicians who felt the baths were a link in HIV transmission, but who were also sensitive to the sexual repression inflicted upon gay men historically. Many of these physicians may have been adept with academic political in-fighting, but they became vulnerable and exposed in the public arena of debate. The criticism and charges of betrayal were difficult for them to take. It was a very charged, very emotional, and very unpleasant time.

Reporting on the Baths

Helquist

I actually did a series in the gay press, in Coming Up! newspaper about the baths.

I guess it was right after Feinstein had, through her agencies, sent private investigators into the baths [fall 1984]. The San Francisco Chronicle or

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Examiner would only refer to it as "the steamy details." They made it very lurid, but they didn't really tell you what it was that was going on.

So I and my partner, Rick Osmon, decided, "Let's demystify this. Let's go in there and write about what's there." Not only did a lot of the population not really know other than what they thought happened, a lot of lesbians didn't really have an idea. A lot of gay men didn't have an idea. They were either scared or intimidated or not interested. The popular notion of, you go in the door and you walk into an orgy was far from true. A lot of people would point out, you can end up walking for hours up and down the hallways and it wasn't very interesting or exciting. [laughter]

So we went in and we just described people we met, who we talked to, and their notions of safe sex, and how aware they were. We told the clientele what we were doing and why. We guaranteed their anonymity. And actually that particular issue of the newspaper was pretty popular, because I guess there might have been some prurient interest, but also just, Oh, this is what it is. We did a survey of all the baths and sex clubs. I think over a period of eight days, we went somewhere nearly every night, which was really exhausting.

Hughes

And this was before the baths had actually been closed? No decision had been made yet?

Helquist

Yes. But the momentum to close the baths was well underway. And Silverman continued to meet with his community physician advisors (including Volberding, Abrams, and Bolan). There was huge pressure to act. I remember a friend telling me that he was going down the street one day in the civic center and he crossed paths with Don Abrams, who was quite worked up. Abrams frantically shouted, "We've got to do something!" And the something that he and others felt must be done was to close the baths. It had the appeal of being a concrete action in a very fluid and uncertain time.

Helquist's Stance on Closure

Hughes

Did you have a stance on the issue of bathhouse closure?

Helquist

Initially, I did, which was, "Let's not close them; let's use them. Let's use them for education; let's get the message out; let's do STD [sexually transmitted disease] testing in them and

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all of that." As I started writing about it more, it was clearer that there were enough opinions and enough emotion out there, and what people really needed was just some reporting, as objective as possible. So then I pulled back to do that. Both around the bathhouses, and then the later controversy about whether to get tested or not. That kind of pulled me into more objective journalism, too.

Randy Shilts's Journalism

29. Randy Shilts is the author of And the Band Played On: Politics, People and the AIDS Epidemic, New York, Penguin Books, 1988.

Helquist

Randy Shilts certainly kept the bathhouse topic top of mind, and deserves credit for that, keeping a focus on it, because much of the sex that occurred in bathhouses definitely was a contributing factor to the transmission of the disease. It was much debated whether you could change the behavior or if you had to change the facilities. And, as objective as he tried to be, I think he also faltered and revealed his own personal feelings about it, because at times, I think frankly, he manipulated some of the news.

In late 1983, the city health department issued a report about STD rates in the city among gay men, and there was a relatively small jump in cases of rectal gonorrhea. Randy used that, and it ended up coming out sounding like there was this big, major increase, and that the bathhouses were the cause.

Hughes

Scare techniques.

Helquist

Yes.

Hughes

How do you feel about his reporting of the epidemic?

Helquist

Well, I know that I'm biased about it, partly because of this inaccurate and egotistic stance that Shilts took that he was the lone reporter on AIDS in San Francisco. I was one of those people whom he was ignoring. And it wasn't just people writing in the gay press; it was people like Jim Bunn, who was one of the primary news reporters for one of the local TV stations, KPIX. He was kind of ignored out of the picture, too. So I felt some resentment for him related to being kind of ignored for the work that I and others were doing. So that feeling colors my sense of Randy's reporting. And there was a kind of

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personality clash, although Randy and I didn't have too much contact. People who knew us let it be known that now and then we each made a crack or two about the other.

I think Shilts's book, especially, was very good for providing a large picture of the epidemic and making it real for people. Really, it did that.

Hughes

Do you think the fact that he slanted his reporting pushed you to the other side?

Helquist

Yes, I think that was part of it; there were enough very strong opinions being voiced around the baths. And then there was the later incident in Randy's book about identifying a supposed patient, Patient Zero, which was a great marketing tactic for the book.

The person he describes [Gaetan Dugas] was real, as were the circumstances of having sex with lots of men and being a flight steward. But a Patient Zero? [laughs] No. The federal health authorities afterwards said, "No. That didn't happen. It's not really possible to say this is where the epidemic started."

Hughes

Well, now it's quite clear that it didn't start there.

Helquist

Of course. And the whole notion that here's the gay journalist (Shilts) pointing out the supposed gay man "responsible" for the epidemic was just too much for many people to stomach. It was crass, inflammatory, and very poor journalism. It's not like we didn't want Shilts to tell the truth, even if it put some gay people in a bad light. But we certainly did not want to be scapegoated because of a fabricated theory that seemed designed to help market the book.

So a lot of people remained alienated from the popularity of Randy Shilts' AIDS work. His later book on gays in the military

ameliorated some of the bad feeling, but for many in the community, Shilts remained somewhat of a pariah.

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AIDS Education

Behavior Change

Helquist

A number of the doctors got involved early on helping people develop the brochures or the posters, the posters that would show up in bars and in bathhouses.

Hughes

How effective was that campaign?

Helquist

In the baths?

Hughes

Yes, or anywhere. Did people really take note and think about changing their behavior?

Helquist

Well, since that time, I've worked a lot in behavior change. I wasn't very knowledgeable of it then. But there's generally a feeling that there's a small percentage of a population who might be called "early adopters," where they'll see a message and just rationally, intellectually say, "This is it; this is the problem; I have to change what I'm doing." Not many of us do that, [laughter] but some do that. So I think that those early campaigns were effective to that degree, for some people more than others.

Probably for most people, it was more of just establishing a counterview and a seeping awareness and acceptance that this epidemic was going on and it was serious. But I'm impatient with people who say today those campaigns didn't do anything; we thought education was going to do it all. Well, maybe the people saying that were naive enough to think that education would do it all. Anyone who has been involved in behavior change, or really thought about it very much, would say, "No, they're not going to change everything with awareness alone."

Public Health vs. Gay Rights

Hughes

The issues of privacy and gay rights overlay this primary problem of behavior change. The bathhouse issue was framed as public health needs versus individual liberties and gay rights. It was an either/or perception. Was that the way people were seeing it?

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Helquist

We had a gay population here which was older, meaning maybe in their twenties or thirties rather than their adolescence, discovering and expressing their sexuality. They hadn't gone through some of the early phases that others might in high school. And there was an exuberance about that, and a personal freedom of saying, "More than I thought, I'm okay. I'm a sexual person, and it's okay." And none of us had heard that sentiment much from anyone before. So there was sort of a celebration of spirit.

In the gay men's community of the seventies and early eighties, there was a lot of encouragement for exploring your sexuality and getting out of the closet. In the midst of this liberation arrives a deadly disease apparently spread via sex. Many men felt threatened that their newfound openness would be once again restricted. And there were certainly plenty of signs then, as there are today, of groups who wanted to stifle the gay population. We barely got a few moments of breathing and living in freedom before AIDS changed everything about our lives.

Our experience told us that the diease was not hitting gay men because they were gay; clearly, there was a link to some kind of external disease mechanism. Some gay people were already politically astute and quick enough to recognize how this disease could be used against us. These activists resisted the shutting down of buildings, of community institutions, as well as attempts to shut down freedom of expression. Many of this group were often adamant and absolute in their convictions, resisting even a discussion of changing behavior to protect against disease.

There was another faction in the gay community saying, "Let's look more at what these bathhouses are and what function they serve."

Yes, they are obviously there for sex. But they're also a safe place to be, off the street; no one's going to beat you up; no one's going to call you names. If you're cruising someone, you don't have to worry if they're really a cop, or that they're going to rob you and kill you or whatever. And some of the nicer bathhouses were kind of social centers, for watching TV or just relaxing.

And they were also one of the few places where some of the population could be reached. Whether they were bisexual men or closeted men or out-of-towners or whatever, any other part of the AIDS education campaign wouldn't have reached them.

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Hughes

So the posters were right there in the bathhouses?

Helquist

They were right there, yes.

Safer Sex Education

Hughes

There's been criticism that the bathhouses were not an appropriate place for education.

Helquist

What? Instead of just telling people to stop? Where, in classrooms and newspapers? This was a deadly disease, and some people were talking about "appropriateness." You go where the people are, period. That includes the baths, the streets, the schools, the media.

Hughes

If you go into a bathhouse, it's not usually to be educated about safe sex.

Helquist

And if you go into a grocery store, it's not usually to be educated about nutrition. But that doesn't mean it can't happen. It doesn't mean that people won't learn something or think about making some changes that they hadn't anticipated. "Education" is often talked about as if it were a very static, manageable even occurring in only certain places. Well, it's not.

Remember that safe sex was a very new notion. Perhaps the term could have been coined to counteract unwanted pregnancy in other health campaigns, but it wasn't. At first, "safe sex" was more narrowly focused: it was all about what you should not do.

Safe sex had a negative connotation; it was a grudging change, and there were suspicions about who was defining what safe sex meant.

It's taken quite awhile for the term to become more positive and affirming. The newer message says, "You can still be sexual, you can still express yourself, but there are some new things you should add to your sexual experience." Much more positive. And all originating in the gay community. One of the

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most influential brochures emphasizing this approach was developed by the Harvey Milk Gay Democratic Club in 1983, I believe. The brochure called "Can We Talk?," after the then-popular stand-up comedy routine of Joan Rivers, was simple and straightforward, gay and sex positive, and used the casual language that gay men used. It was an immediate success, and became a model among the gay population of U.S., Canada, Europe, Australia, and several developing countries.

This brochure helped set a new tone for AIDS education. So, when men went into the baths and sex clubs and saw posters with these new messages, the effect was in contrast to all of the negativity and blame about AIDS that they experienced outside. There was also an effort at this time to romanticize and eroticize the notion of safe sex. Dating was promoted with a romantic theme, rather than just quick sex, and using condoms and other products were sold with an erotic theme, rather than a simple focus on disease.

AIDS and the Gay Community

Political Divisiveness and Demoralization

Hughes

Can you say something about the impact of the epidemic on the gay community here? Some of its political divisiveness is certainly highlighted in Shilts' book. What more is there to that story?

Helquist

Well, there's certainly that, what I would see as sort of the downside, the political divisiveness, which was going on related to other areas of life, other political things. It was a period when the gay Democratic clubs were coming into their own and competing with each other, so there was strife among politically active members of the community anyway. Not all gay people are like this, but a lot who were prominent were very articulate, had very strong opinions, and they knew how to use the media to get their opinions covered and spread. So that was prime for any controversy that came along.

I think the other negative effect certainly was a demoralization, was feeling stigmatized in a different way all of a sudden. All of those things going on had an impact. Plus seeing the numbers of AIDS cases increase.

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In those days, it was early enough in the epidemic that memorial services for some gay men were held on Castro Street. When Bobbi Campbell died [August 15, 1984], Castro and 18th were closed and a stage was put up, and his parents and friends talked about him. It's just not something that would be done now after thousands of people in the city have died of AIDS.

But it was interesting, too, that there was a very energizing element to having this new disease in our midst. It was partly the drama of it, partly the excitement of something new and something that we could work on, the excitement for a lot of people of coming into careers, not just the physicians and the nurses, but journalists, activists, politicians--lots of different people who were needed, but nevertheless advanced in their careers as a result.

Lesbian Involvement

Helquist

I think of the most striking positive things that occurred, one was the involvement of women in AIDS care and AIDS activism, lesbians in particular. Prior to this, like in the early 1980s,

there was much more talk and expression of lesbian separatism. Many lesbians wanted to be separate from men, and gay men. Gay males, gay white males primarily, were those in power, those who predominated in all sorts of social and political functions.

It's not accurate to say that most gay men didn't like women. But there was enough feeling of resistance or anger or whatever coming from their backgrounds, that you could feel that that was one of the elements, and there was a real separation. This was the time, late seventies and early eighties, when the Gay Pride Day and March was just that: it was called gay pride.

It took a few more years before things loosened up a bit so events and groups were renamed, e.g. gay and lesbian pride, and gay and lesbian democratic club.

I think with AIDS, a number of dynamics shifted. Partly there was a shift to more prominence of people in the health

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care field, whether in direct medical care or in helping professions, like social workers or the Shanti organization. So leadership in the community was broadened. There were more voices to be heard. And it became very clear to gay men that women had many talents and abilities that men had never developed in themselves. So here they were, responding as leaders, a caring response, knowing how to deal with the medical system, or being willing to go into it. It started blurring some of the boundaries between gay men and lesbians, and appreciation grew incredibly for the women in the community who were there and who were doing so much.

Early on, there probably was some understandable resentment in the lesbian community about, "Sure, we're sorry this epidemic is happening, but we have our own issues, and where have you been for us?" This attitude shifted, not because gay men adopted lesbian issues as their own, rather lesbians realized that all of our rights were threatened because of the negative response to AIDS.

Hughes

Has the epidemic served to pull the two elements together?

Helquist

Yes, it definitely did that. Then with the toll of gay men being so great here--what is it, 15,000 having died by now?--a lot of the natural leaders or those in place, people like Bill Kraus,

have died. So maybe their assistants who were women, or their colleagues who were not so prominent, were able to move into the void.

So there was an appreciation for what women were doing; there was a little broadening; there were men beginning to see that maybe their lives were a little too limited the way they were living them, as well as political changes where women came into more prominence.

Hughes

And what about simple friendships? There's nothing like proximity in working for a cause.

Helquist

Yes, very much so. I had a few women friends before AIDS started using up so much of my time, but I developed many more

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friendships with women as a result of having more contact with health care workers and politicians and others who were involved. So the bonds just really shifted and changed a lot. And it was kind of a relief that AIDS wasn't hitting at that time men and women, gay men and lesbians, for those who may have been concerned about, What's going to happen to our population? And early on when we didn't know what the toll was going to be. I think early on, people thought, "This won't kill every gay man, but it may get close to that."

Hughes

It could be turned the other way around: Here I am, a gay man, who's had enough problems with society so far. You're a gay woman; why are you spared?

Helquist

Yes, I suppose some men felt that way, but I don't believe there was a predominant resentment toward lesbians about AIDS.

The Kaposi's Sarcoma Research and Education Foundation ##

History

Helquist

The KS Clinic made sense because it had an early history in dermatology. Marc Conant was a dermatologist, and here were lesions on the skin, so clinically the connection made sense. But the fund-raising organization was the KS [Kaposi's Sarcoma Research and Education] Foundation, and then after awhile, it was expanded to the KS and AIDS Foundation. There was the KS Foundation, KS and AIDS Foundation [San Francisco AIDS/KS Foundation], and then some of the politics split it off into the local foundation [San Francisco AIDS Foundation] and the AIDS National Research and Education Foundation.

It was just a storefront effort where people were volunteering, sending out pamphlets, trying to organize some town hall meetings, very small offices to begin with, very few resources. And then gradually it built up, and I guess it maybe moved four or five times around town into larger and larger offices.

Hughes

And it created a hotline, right?

Helquist

And the hotline, that started early on [1982]. A friend of mine was the first director of the KS Foundation, Rick Crane. It was a very difficult time. Not only were people who maybe didn't

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have the experience brought into the organization, but then it kept changing and evolving. For a long time having activists involved in leading the organization was needed and appropriate, but at some point as more money came in and as things got more complicated, you needed people with training and professional-ism. This shift in staffing was difficult, and, at the time, it felt like there was just nonstop controversy one way or another, plus this medical crisis.

Hughes

Was the main function of the KS Foundation in those early days education?

Helquist

Yes, definitely, but with an emphasis on AIDS awareness, acknowledging the health problem.

Hughes

How effective was that?

Helquist

I think probably very effective for what could have been done so early on, both because of limited resources, and no one else was working on this. So yes, it was grassroots and it was very low-scale media work, as we would look at it now. But it was the only thing that was going on pretty much during the period of 1981 to 1984. There was this foundation, and there was the Gay Men's Health Crisis [GMHC] in New York, and not many other AIDS organizations had started in the country. And today, of course, there are hundreds of community-based AIDS organizations.

Rivalry with the Gay Men's Health Crisis

Hughes

Was there any communication between the coasts?

Helquist

Yes, there was, since there was generally a lot of gay travel between the coasts. And, not surprisingly, early on there was a rivalry between GMHC in New York and everyone else, including the AIDS Foundation here. GMHC was founded first, which even today, they will not hesitate to tell you.

New York City can always put in more money than San Francisco for benefits, and

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much of the early GMHC efforts involved fundraising, and they were very successful. Many gay people contributed to the fight against AIDS in New York by going to benefits, donating money, and coordinating efforts with other service organizations. However, in San Francisco, money was not so available although we did mount benefits. The emphasis here was more on volunteering and community involvement, volunteering for office work, materials distribution, emergency services, hotline services, and overall community awareness.

As it became more clear that AIDS was going to be with us for quite some time, people active in the struggle began to think of a national AIDS organization. After all, we were all familiar with disease and health-focused organizations like the American Cancer Society and the March of Dimes. At the time, it seemed that a national AIDS group would help focus efforts and coordinate fundraising. As a result, there was a rivalry and some contention in 1982 until 1984 about who would form such a national group. GMHC proposed that they simply become national, not focus just on Manhattan, and the San Francisco AIDS Foundation (SFAF) was considering exactly the same role for themselves. In San Francisco this plan became more complicated when some of the supporters of the early local foundation (including Dr. Marc Conant of UCSF) decided to form yet another AIDS organization, the AIDS National Research and Education Foundation. A separate board of directors, paid executive director and staff, and program goals were established. The New Yorkers found this action to be presumptuous and resisted any plan for the new organization to develop local affiliates.

The national foundation soon faltered [March 1984] due to poor management, lack of funds, and the fact that groups were already forming independently in other cities to address their own needs. Thus major organizations soon developed in Los Angeles (AIDS Project Los Angeles), Atlanta (AIDS Atlanta), Seattle (Northwest AIDS Foundation) among many, many others.

"Person with AIDS"

Helquist

One element that I am aware of through Mark Feldman is the whole naming issue. Giving names to what's happening is important, and from the best that I can tell, through my being there and through my research and writing, Mark was the first to coin the term "person with AIDS." Clearly, the description until then was "AIDS victim," which still continues today in some of the media.

At one point, I think it was the Denver conference of gay/lesbian health workers, the Fifth Annual National Lesbian

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/Gay Health Conference, that was in early June of '83--people came from all over the country, but there was a big contingent from New York, a big contingent from San Francisco, and many people with AIDS came. The San Francisco contingent was more adamant about saying, "Look, we need to refer to ourselves as people with AIDS." The New Yorkers had certainly gotten beyond the point, if they were ever there, of thinking of victims, but they were settled on saying, "We are patients with AIDS; we're AIDS patients." Still medicalized. So there was a little bit of a clash, although "person with AIDS" came out as the more popular and it predominated.

The National Gay/Lesbian Health Association

Hughes

What did become the early national spokes-agency for AIDS?

Helquist

There wasn't one central organizational voice. Soon the several AIDS groups started working together among themselves, informally. These organizations were quickly overwhelmed with their own local patient service and care needs, and the AIDS education programs. There really wasn't the time or energy to address local needs and to assume national leadership, although GMHC and SFAF remained then, as they are today, predominant voices. In September 1985, a national fundraising organization, The American Federation of AIDS Research (AmFAR) was formed and continues to raise grants and funds for AIDS research. Dr. Mervyn Silverman later became the executive director of AmFAR.

One other organization, the National Gay Health Education Foundation (NGHEF), did provide leadership for the many gay health care advocates and providers. The association convened national meetings about AIDS two years before (1983) the federal government ever mounted its own conferences.

Hughes

The association existed before AIDS?

Helquist

Yes. It initially focused on STD [sexually transmitted disease] work and concerns--STDs showing up in the gay populations in the 1970s and early 1980s. Yes, a lot of early gay and lesbian

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physicians, nurses, epidemiologists, and behavioral researchers got started there, and fortunately were somewhat poised to then broaden the perspective into including AIDS in their focus.

The Shanti Project

Hughes

What about Shanti?

Helquist

Well, Shanti certainly became a national model and leader, a one-of-a-kind organization in those early days. Certainly they started out very small, first meeting in Jim Geary's living room.

Hughes

Shanti existed before the epidemic, is that not true?

Helquist

Shanti was an organization before the epidemic. Charles Garfield had established Shanti, and I think Jim Geary was involved with Shanti work then, which focused primarily on end-stage cancer support work. It wasn't really a hospice focus, but certainly it was concerned with people who were dying. They were based in the East Bay. Then AIDS appeared, and Shanti shifted its focus to include people with AIDS. Bobbi Campbell became sort of a spokesperson for Shanti, and the organization moved to San Francisco, and then started growing rapidly.

You are probably aware of some of the early development and criticisms of the Shanti approach. First of all, it got established and its approach seemed just right. Here's what people with AIDS need; we need some emotional support. The whole notion was kind of unfamiliar to us. There was an emphasis on dying well, coming to terms with death and dying. There were death simulation exercises or visualizations, where this whole group of people would be in a room sort of like a gymnasium, and you'd be lying on your back on the floor. Someone would guide you through the exercise, talking about, "Now imagine this; now imagine this." It was a very powerful experience.

It seems like it was mostly appropriate for the time. That is what was happening: people were dying. It was difficult dying, so here was a response to it. Only later, partly because there were management excesses at Shanti, and there got to be a

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few personalities that weren't good for the organization, people started objecting and saying, "Shouldn't we be focusing on living? Isn't there something to fight here?" So there was just constant evolution.

The San Francisco Model of Comprehensive AIDS Care

Helquist

Shanti certainly did become the model for an integrated hospital, community, service organization approach to service delivery. It was an important part of the San Francisco model of comprehensive AIDS care, and it became very common for people from all over the world to traipse into town, go to the KS Clinic, go to Shanti, go to the AIDS Foundation--emissaries from Europe, not so much from Asia yet.

Which also was energizing for people. I mean, here were people from all over the world coming to us to see what we were doing. It was not like we had some grand plan; we just tried to do what we could. Someone all of a sudden called it the San Francisco model.

Hughes

Why San Francisco rather than New York?

Helquist

I haven't ever lived in New York, so it's an outsider's perspective, but my thinking was always that things were much more fractionalized in New York. There was more tension between groups and individuals; there was more infighting. And people were more closeted in New York than they were here. Gay people were certainly active and known to be gay in the social world in New York, but professionally, they tended to be more closeted, so it was more difficult for them to step forward and publicly support an effort to stop a disease, one that was linked so closely to homosexuality.

Plus everything was so much larger scale in New York that I think the notion of community-building would have been much harder in such an intense, urban environment with all the other stresses, the poverty and whatever else was going on. San Francisco felt more like a little protected world where we could do what we wanted to, but it wasn't so big that we couldn't get a handle on it.

And it seemed like the political structure was more accessible here than in New York, that there was some beginning feeling of gay power through numbers of gay voters. But also gay people had permeated every profession, every walk of life

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here, and were relatively open about it, and with AIDS they became even more open. So AIDS touched more of San Francisco-- gay and straight; so it had more impact.

AIDS Medicine Moves to San Francisco General

Hughes

Why did the focus of AIDS medicine shift to San Francisco General?

Helquist

There was the establishment of the KS Clinic. People who were aware of some of the developments and politics on the inside were aware that, Okay, here was one physician, Dr. Conant, who was very involved, but setting up his little empire--maybe that's too harsh--but setting up his focal point. Then there got to be a shift to San Francisco General to oncologists. And then kind of a jockeying for position: where should the focus be for AIDS medicine. And I'm sure, from UC's perspective, where should the money go?

You don't get a sense that there was much support at UC for being a leader in any of this AIDS work. They responded medically with the clinic and, obviously, the professions were there to respond, but not in any particularly organized or official way until later.

Hughes

Did it matter to the community where AIDS medicine was? Did people have any feelings about its shift to the General, which as a county hospital dealt with a very different patient population? That's where charity patients were seen; the whole edifice is very different from UCSF.

Helquist

Well, I think there was a range of reactions to it. On one hand, some people aware of health care dynamics realized that we in San Francisco were very fortunate that San Francisco General was there as the county hospital, because people with AIDS could get care there. There wasn't such a financial burden. Coincidentally sort of, these AIDS experts also were there. So that was a real plus, and people recognized that.

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Early on, I suppose, people were more open to going to the General if that's the only place they could go. I think it didn't take too long before people realized, I'd rather go to somewhere like UC. I mean, those who knew they could afford it, where it was an option. Or they'd rather go to a community hospital like Davies Medical Center or California Pacific Medical Center.

Hughes

Was that a status thing, or was it the feeling that you got better care at these other places?

Helquist

I think the notion was that at the General, the most advanced AIDS care, what there was, was happening there, but that institutionally, the surroundings were much more pleasant at lots of different places. But this was also a population which wasn't experienced with going to the hospital. Since most gay people here didn't have their biological families nearby, they weren't even going to hospitals to visit aging parents or aunts and uncles.

Referrals to AIDS Physicians

Hughes

That's an interesting point. I imagine eventually it was common knowledge that if you had symptoms which were recognized to be prognostic of AIDS, that you would go to certain physicians. But in the early days of the epidemic, that wouldn't have been obvious. How did people find the health care providers that knew about AIDS?

Helquist

Well, certainly word of mouth was very effective. There were gay and lesbian physicians in practice, and maybe because there was this epidemic of STDs prior to AIDS, those patients who were prone to get the STDs were already connected with a physician. I read somewhere that the old VD clinic is now the site of the new San Francisco Museum of Modern Art. [laughs]

Hughes

Is that the 17th Street health center?

Helquist

No, there was a specific VD clinic where you went for gonorrhea, syphilis, whatever. People either went there, or to some of the neighborhood health clinics, or maybe had their own private physician for general checkups. So there was some foundation, and then I'm sure a movement to different docs who seemed better informed about AIDS. This was still a small world, both San Francisco and the gay community in it, and an inquiry like "Who

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do you go to for AIDS?" could easily be answered by the AIDS hotline, gay clinic staff, and sometimes, by friends.

Hughes

Yes, it wouldn't be difficult to get the information.

Helquist

Yes.

Psychosocial Support

Hughes

Were Mark Feldman's expectations when he went to the clinic strictly to get medical care, or did he and others look upon it as a place where one could get information about the support system? Namely, what do I do when I walk out of this clinic? Who takes care of me? Do I go back to my community physician, or am I totally reliant on the clinic physicians? What do I do if I don't have anybody to take care of me when I really get ill?

Helquist

Well, there just was very little established. There wasn't experience with the system. I presume there was a social worker at the hospital who would organize your care after you left the clinic, but it wasn't that there was a lot of understanding that that's how it worked. I think people just happened upon the other resources, or heard about them, but there wasn't a patient advocate or any impetus for telling people, "This is how you can deal with it." Although some physicians, nurses, and other staff provided considerable informal information and advice.

Hughes

Helen Schietinger took on some of those responsibilities, but there was a limit to what one person could do. She certainly was aware, from what she told me in the interviews, that the problems were far from just medical, that there were psychological needs, there were simple housing needs, and the whole structure of complicated support had to be built up. It took time.

Helquist

It had to be developed. And of course, this was also in the context of hysteria around AIDS. Why would we assume that organizations and care providers would just say, "Sure, we'll welcome you with open arms"? Nursing homes took forever before they'd accept AIDS patients, and they probably aren't accepting many now. And of course, there was also the hesitancy of people identifying themselves: "I have AIDS. What can you do for me?" So there were lots of problems.

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Hughes

A name that crops up in the early history is that of Paul Dague. He was the psychologist who volunteered his time early on in the KS Clinic.

Helquist

Right. I don't remember his involvement with the clinic. I met him and talked to him some; I wasn't close to him. But I know that his having AIDS and then his being open about it, and his dying of AIDS, had a pretty large impact on the professional gay community. But that's all I'm really aware of with him.

Hughes

Did counseling of some kind become more or less a standard part of the treatment protocol?

Helquist

Yes. It became part of the San Francisco model. We thought that this element was important, and we started talking about the psychosocial impact of AIDS. Shanti originally played a major role in that, and then a number of mental health professionals developed what's now the UCSF AIDS Health Project.

Hughes

With which you were associated.

Helquist

I had been involved with several organizations at first: developing AIDS education materials for the AIDS foundation, participating and then training at Shanti workshops, developing promotional materials for San Francisco Hospice. But my greatest long-term involvement has been with the UCSF AIDS Health Project, beginning in 1985 and continuing today. In '85, we developed a monthly newsletter called "FOCUS: A Guide to AIDS Research," that examined various mental health concerns and conditions related to AIDS. "FOCUS" continues today, and it has an international readership.

Thank God there were gay people in those mental health professions at that time, and willing to get involved. It saved a lot of time.

Hughes

Much of this work was done on a strictly volunteer basis.

Helquist

Yes.

Hughes

That was true of some of the clinic staff, as well. There were community physicians who volunteered their time; came every week to be in the clinic.

Helquist

Right. And a critical element again is with gay people being open and in so many parts of the city government and elsewhere, it was easier to pull whatever money there was out of San Francisco. And people like [Mayor Dianne] Feinstein and others were sympathetic and were trying to help.

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Hughes

And, there was a city budget surplus as well.

Helquist

Yes.

Fear of Infection

Hughes

How did you deal with fear?

Helquist

I don't remember a lot of fear. I don't remember a lot of fear being around Mark, and there was intimate contact. Mark and I evolved into partners and lovers. Whenever we were sexual, it was like safe sex before the term was coined. But AIDS happened very quickly for him. He was diagnosed and then died seven months later, so the relationship was intense and compressed in that way.

Sometimes when I would spend the night with Mark, friends would say, "Well, maybe it's airborne. Aren't you concerned about his breathing on you, much less touching dishes or whatever?" And I think maybe I was lucky to be involved in the human component so intensely and quickly that I was just there for him. And I don't mean that as complete selfless giving; I was there, he was someone I cared about, and it seemed like there was something that I could do. It's not as if there were any indications that casual transmission did occur. It's just that you weren't really sure.

Once Mark died, my involvement with AIDS only increased and continued (1983-1993). At some point, working with AIDS became a job, somewhat like any other job. It had a daily pattern of expectations and demands. There were clients, and colleagues, and supervisors. AIDS work was becoming normalized for me and many others. I think one of the benefits of the process for me was that "AIDS the job" diluted "AIDS the personal threat." I could be engaged in my work but I could also be detached emotionally at times. Today I realize that during that early period, I used my AIDS work as a defense against taking a close personal look at my fears.

I learned that I was seropositive in spring of 1986. Clearly it was a blow to find this out. I'd expected to be seropositive, but up until the moment when my doctor, Bob Bolan, gave the results, I had held onto some hope that I would be wrong. I don't remember an acute symptom phase after seroconverting, but then we weren't alerted to that possibility. After recovering from the initial shock of discovery, I didn't

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focus very much on my own HIV status for years. I was very busy with work, so I really didn't focus on it too much.

I think I didn't really experience fear very much until the last few years. In 1991 and 1992, my T cells began dropping significantly every three months that I was tested. I heard the clock ticking louder, and I knew that if I were to get sick, I wanted it to be in San Francisco and not in Washington, D.C. So my partner and I relocated here (1992), bringing our jobs with us. Then in 1993 my T-cell count dropped below 200, the recently instated number signifying an AIDS diagnosis. That was sobering; the word "AIDS" was now defining my life in frightening ways.

I was looking in Mark Feldman's journal and seeing his entries of 1982 and thinking, twelve or thirteen years ago? Is that possible? I was really there with him then? For some of us, most of our professional lives have centered on working with AIDS.

The Ms Magazine Article

Helquist

I had one little anecdote about Helen [Schietinger]. I wrote the article about the KS Clinic, and that was fine.

It went well, and we did it well, and I was getting to know Helen.

I also wanted to both spread the word more and stretch a little bit more professionally. I'm not sure exactly why I thought that I could write something for Ms magazine. I don't think they had really had anything about AIDS before this article. At one point, I saw some of their statistics that said of all the articles Ms had published up to that time, something like 5 or 6 percent were written by men--reasonable enough. But I don't know why I thought this magazine was a possibility, other than I knew Helen and other women were playing an important role in the epidemic. So why shouldn't that be highlighted?

So I sent off an inquiry to Ms, and they were interested enough to say, "Get started and see what happens." Helen and I started the interview process, and at some point, the question came up, Well, do I want to be Helen Schietinger, nurse at the

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KS Clinic, period, or do I also want to be a lesbian health care provider? And we went back and forth and back and forth, and I think finally Helen just got tired of having to think about it, and she said, "Oh, what the hell, just put it in there that I'm a lesbian." There was a lot of energy around it, but finally she said, "Well, just do it." So I finished the article and sent it in, and that feminist publication deleted the reference to her being a lesbian. [laughing]

I remember when the question of coming out was an issue for Angie Lewis,

and she was in an established, responsible position as a nurse at SFGH. The point came where she just felt like she needed to make a personal and professional choice to not hide a very basic part of her life. I felt great admiration and inspiration for her openness.

Characteristics of San Francisco Hospitals Providing AIDS Care

Ward 5B

##

Hughes

Did you have any particular insight into AIDS care at San Francisco General?

Helquist

My contact was mostly through a few people who were patients, who were hospitalized I guess even before the AIDS ward was established. Mark Feldman was hospitalized at General once, and I don't remember 5A or 5B being there at the time.

Hughes

It was 5B first, which opened in July 1983.

Helquist

Yes, so he was there prior to that. Then I started interviewing Volberding and others, so I got to be more aware of what was happening.

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Discrimination

Hughes

In Mark's case, was there any problem with treatment before he was on a ward dedicated to AIDS? There was a lot of fear, from what I understand, amongst the hospital staff.

Helquist

I don't think that he encountered very much. He had the one hospitalization there, but mostly he was at Davies, and died at Davies (on June 2, 1983). By that time--it was still '83--there were enough people who were willing to be involved in AIDS care that it seemed sort of the norm, and there weren't so many incidents of discrimination. But I'm sure there were many that I didn't hear about.

Hospitals as Social Centers

Helquist

You know, it's an interesting thing about the Davies center and General, and I suppose the UC Medical Center; I'm more familiar with the Davies phenomenon. Davies and places like it became another social gathering place, in a weird sense. While you were up there on the floors visiting your friend or lover, you'd take a break; you'd go downstairs for coffee in the cafeteria, and there were all those other gay men and lesbians also taking a break. And you got to know some of the other people who were going through the same thing, which certainly helped for support, as well as just meeting other people. What a strange twist--the hospital cafeterias become a meeting point for gay people.

Comparing San Francisco General and Davies

Hughes

Do you have any comments to make about your impressions upon walking into San Francisco General, as opposed to Davies?

Helquist

Oh, yes, definitely. The times that I was at General, clearly it's a big institution; there's a lot going on, and when they had a lot of AIDS patients, and even establishing the clinics, it was a little overwhelming. It was busy; it was pretty well organized. It was before the point where they were swamped with

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AIDS patients, but there was a lot of activity. It was not like you'd lost any of your human qualities or were treated that way, but it was just so much larger. It was more institutionalized.

Whereas Davies seemed much more manageable for patients. The floors were smaller. You'd get to know some of the staff over time. It was friendly. They were willing to let people put posters on the wall, bring flowers and balloons in, and let lovers stay late into the night with their partner/patients, which was kind of new at that time.

Hughes

Did you feel that the Davies group was as up on the latest regarding AIDS as the group at San Francisco General?

Helquist

I think so. The primary AIDS physicians in the city, who had most of the AIDS patients, were very close. It was a relatively small circle of physicians in those days. Steve Mehalko, who was Mark's physician, was a community doc. He had an office, actually, in the Davies Medical Office Building. He was very up-to-date on everything, even though he wasn't part of the UC-General complex.

I'm sure there were people who had physicians who were not very knowledgeable and from whom they probably didn't get very good care for that reason, and for whatever other reasons. Maybe they didn't have the choice to move on to someone else with a better knowledge of AIDS medicine. I'm sure the physicians would give you a perspective of being overwhelmed, and probably feeling resentful that there were so few of them who were handling AIDS patients, that they carried so much responsibility. It's not something that I think was noticed from the patient side so much: the physician was there for me.

Hughes

Did Mark choose to be at Davies, as opposed to the General?

Helquist

I think it was more a matter of, he chose to be with his physician, who practiced out of Davies. But Davies already had a pretty good reputation for sensitive AIDS care. I was just flashing on a number of experiences, walking in the hallways in Davies late at night.

One thing I was going to point out, maybe a profession-expanding factor for physicians and nurses, was also that they had these very articulate patients who when they weren't sick perhaps were doing their own research--I'm not saying they necessarily knew more than the doctors. In some cases, that was true on some points. But they were knowledgeable, plus they were going to speak up. There was some stuff they just wouldn't put up with.

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I remember when I was visiting Mark when he was getting pretty ill, he decided he would like to have me stay there, first beyond visiting hours and then overnight, or kind of whenever I was ready to leave. We just did. So there was a little tussling for a while, but then some of the nursing staff was flexible enough to say, "Yes, this can happen."

Therapy

Hughes

What was actually done for him? He died in 1983?

Helquist

Yes, in June of 1983. He had KS; at first in his mouth, then on his skin, and finally in his lungs. He also had Pneumocystis. I don't remember much treatment for the KS. I know he had a really awful time on interferon. He really had very serious side effects, and it was very difficult. And then he had a number of mouth ulcers, which of course got very difficult too. There wasn't a lot of therapy available then.

Hughes

So it was mainly nursing care?

Helquist

Yes, it was mostly nursing care.

Hughes

Did he go off the interferon?

Helquist

Yes, he had to. It was just too hard on him.

Hughes

And it wasn't doing any good anyway, was it?

Helquist

No. Things were just moving so fast for him; he never really had periods of physical stability.

Hughes

You started to say something about walking down the halls late at night. Can you give me some of your impressions?

Helquist

Yes. One time, I remember visiting Mark in his room, and my being upset and going downstairs at Davies into the men's room, and there was some graffiti on the wall, something about "All faggots should die. They deserve AIDS." So I mean, the contrast was so stark.

And certainly the late-at-night walking the halls. I remember one of the early AIDS specials on TV, and it was on in Mark's room, and I didn't really feel like watching that. I just walked up and down the hallways, but it was on TV's in lots

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of people's rooms. I felt deeply saddened by the enormity of what was happening to us.

Hughes

Was Mark watching it?

Helquist

I think he probably was. It was just that really odd feeling of having all this swirling around you. Sort of unreal that you're even there in the midst of it.

Hughes

Well, hospitals are unreal places to begin with.

Helquist

Yes, very much so.

His parents who lived in New York came out to visit several times, and there was initially a period of adjustment as his mother and I grew accustomed to each other.

Tensions between Friends and Parents

Helquist

One of the dynamics that was becoming more prominent is that a gay man's support circle, men and women, would organize themselves to do duty with him, cooking or staying with him or whatever. And lots of times, parents would come out who had been estranged from their son. It wasn't the case with the Feldmans, but they would come out and see basically this whole other family in operation, which they could either appreciate or resent, or want to establish their rights, hospital rights and otherwise. There was an undercurrent of recognizing that there two families present, and it was disrupting expectations for a number of people.

When I came into Mark's life, he'd been here in the city for ten years, and he had a very large circle of friends, and very close friends. I was the newcomer. Later, I realized that there had been some feeling of, "Why should he be the one to spend the time with Mark? Why should he be one of two nonmedical people to be with Mark when he died?" And I wasn't too aware of that; I wasn't really in a position to care about it at the time.

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The Epidemic's Impact on Personal and Professional Lives

Hughes

Do you have any observations about why some people choose to become involved in the epidemic and some do not?

Helquist

Professionally?

Hughes

Yes, or in a social context.

Helquist

I am reminded that some of the early commentary about what was going on in the gay community here talked about what a maturing influence having to deal with AIDS was, and how people had to find their compassion. And that was true. But I remember thinking at the time, Well, wait a minute. I was a mature person before I got involved with this, and I was a caring person. It's not like I needed this crisis to all of a sudden develop these qualities.

But I think for some people, AIDS actually gave some definition to their lives. It did for those with AIDS, as well as those who found a way to contribute. There was a way for them to contribute and be connected in the community other than by being known socially, going to bars, or whatever. It was acknowledgment and recognition, as well as knowing that they were being part of helping out in the crisis.

So a lot of it was good will and opening our hearts. A lot of it was some notion of, Maybe this will protect me from AIDS, if I do good work for it. For some, it was a way to deal with their fear and panic, getting so involved with AIDS work and staying so involved that they didn't really have enough time to feel it personally. It helped them deny it.

And I think because AIDS hit this gay population, who already had a notion of, "We're kind of here on our own; we're already a defined group, a discriminated group, and society as a whole isn't necessarily going to come to our aid." We knew we had to do it, because maybe no one else would. And that's not so much the case now for others affected by AIDS, nongay people.

I would think that to capture the full story of the KS Clinic and UCSF and people who were involved, it would be important to emphasize how so many people took their experience and knowledge and were valued for it and became more international in their efforts. San Francisco provided a lot of people who shaped the response to AIDS worldwide.

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Now that is a little pretentious for me to say that, but when things were just getting started, working with the CDC or with the World Health Organization, all of a sudden, a lot of people working here were becoming national speakers. And then they started being on the front line of some of the international work and the international conferences, and they were the front line for a long time.

Almost every facet of health care delivery on a global level began to be shaped, in part, by professionals who had their initial AIDS work experience in San Francisco. The local medical doctors and researchers certainly helped shape the medical response to AIDS. But so did the health care administrators. For example, Dr. Mervyn Silverman became the spokesperson for AmFAR with influence worldwide; Cliff Morrison, the nurse, shared his expertise with establishing AIDS care hospital units. Helen Scheitinger is now an international consultant and helped draft the curriculum for nursing aspects of AIDS care for the World Health Organization [WHO]. Jim Bunn of local TV KPIX became a public relations representative for WHO and developed the idea for the first World AIDS Day which has continued ever since. And the government's AIDSCOM project drew heavily upon those of us who had worked on AIDS in San Francisco, including Dr. Glen Margo, director of the city health department's Health Promotion Unit; Dr. John David Depree, active in East Bay AIDS work; myself, and many others from the AIDS organizations here who served as AIDSCOM consultants.

Public Recognition of the Scope of the Epidemic

Hughes

Is there a deciding event through which the scope of the epidemic begins to be appreciated?

Helquist

I was even trying to pinpoint a year, if not so much an event. Certainly, Rock Hudson's death in the larger world was a turning point. What was that, '85?

Hughes

Yes.

Helquist

So maybe even in 1984, the experience broadened with other organizations, other cities involved, being aware that this wasn't just a New York, San Francisco, and L.A. epidemic.

Hughes

And of course, the AIDS test underlined that.

Helquist

Yes. Very much.

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Hughes

It's Hudson's death that really had an impact on the larger society, too. Was that the first event that captured the attention of the nongay community?

Helquist

It probably was, for the shock value of it. I think gay people approached it with mixed emotions: Good, we're glad this AIDS awareness is finally becoming larger. But also the same old thing: What's it take for the national public to become interested in AIDS?

Hughes

It takes a movie star.

Helquist

Yes, or it takes a Ryan White.

Discovery of the AIDS Virus

Hughes

Did the discovery of the virus mean much to you and to other nonscientists, nonmedical people?

Helquist

It didn't come as a surprise, because there was a lot of buildup that this is a sexually transmissible disease, probably also through the blood. Those connections were pretty clear.

I have a little story. I was tracking down the story about discovering the virus, and Don Abrams had given me a tip, sort of confidentially saying, "There's something that's going to be coming out of the federal government about this, and you might want to talk to this person." And to show you how things were different in those days, I just rang up Robert Gallo's phone, and he answered--[laughter] it's been a long time since he's done that probably--and he said, "I can't really tell you this for publication, but I'm going to go to London, and there's going to be a press conference,

and I'm going to announce this in New Scientist magazine." Which he did.

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It was frustrating for me at that time when I was writing an article for the San Francisco Bay Guardian, a weekly paper.

Because of the timing of when they published, I think we were about a day after Gallo made his announcement.

Kaddish, October 1983 ##

Helquist

This is an anecdote showing how things have changed from the early days. This was in October 8, 1983, and I had become somewhat more prominent because of my writing about Mark Feldman and having contact with health care providers. Although there had been the first AIDS Candlelight March in May of 1983, in October a number of people who were interested decided to have another kind of recognition and exhortation among the gay population. This was an occasion when we closed off Castro Street and put a stage up, and there were a few speakers.

I guess because of some of my Jewish friends and through Mark, I became aware of the Jewish tradition of Kaddish, and we wanted to be able to remember people. What's the phrase--"We will not forget you." Obviously, we didn't want to read off people's last names. But I thought that it would make sense to get the first names of the men who had died, and to read them in front of the crowd, and to keep reciting the "we will not forget you" refrain.

Well, the only way to do that was to go to [San Francisco health department epidemiologist] Selma Dritz

and explain what we wanted to do and ask her if there was a way to get access to the names. She said yes. It wasn't like I was just anyone walking off the street, but there weren't professional links to the request. So she said, "Here, write down the first names, obviously not the last names." And she just pulled out a three-ring binder, and she had everyone's names written on it, and the dates of their death. She let me go through the binder and write down all the first names from July 1981 through September 1983. I did see some names in there of people I knew who I

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didn't realize had died, so it was unsettling. Obviously, this kind of access to such names would be discouraged, if not outlawed, today.

Then at the event on Castro Street, a friend of mine and I were reading all those names back and forth, and repeating the line, which was pretty powerful. I think there were about 120 names of people who had died of AIDS in the city. But I always think of the occasion in respect to our justified concerns about confidentiality; not that Selma really broke that. Some people would say she shouldn't have done that, but it is a show of her trust of my intentions and a highlight of how things were more informal, that there was a more mutual effort to try to have an impact.

The Uniqueness of the Gay Community's Experience ##

Hughes

Well, Michael, is there anything else you want to say?

Helquist

Just a comment about the AIDS experience. I think it's very, very difficult for anyone who isn't gay or who isn't very close to the gay population to understand what gay people have gone through with AIDS. Just the notion of how many men--mostly men --could say, "I've lost three lovers, four roommates, ten friends--" just the numbers, for people in their thirties and forties. Maybe people in their seventies and eighties can relate to their friends' dying around them, but it is not beyond your expectation that that happens in your eighties. It's not like gay people have experienced something that you can't have; it's just, this experience is so personal and so pervasive, and our attention has been forced to be focused on it for twelve or thirteen years, that you realize that in some ways, outside of the gay population, you're kind of alone with that understanding and feeling.

I think of my family and my parents; they relate to me having AIDS, and are supportive and all, but they don't really have the sense of how many people I've lost or what that's been like. I've told them about some, but to tell them every week that there's someone else-- Well, you just don't do it. But it puts people close to the epidemic in a pretty unique position.

The positive side is that I think a number of people in their twenties and thirties have confronted death and dying, and what those experiences mean, and what they can do to you and do for you, that others aren't challenged to confront.

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I remember when Mark was dying, he limited the number of people he would see, and he'd certainly stopped all of his organizational work and community work. One of the primary things I learned from him, he would say, "It all comes down to love." And that wasn't any new age feelings--this was just really basic. When a lot of the external things fall away by necessity, it just becomes more clear that love is really what it's all about and what matters.

There are a lot of people now who have gone through that experience. It doesn't shield them from the pain or the tragedy, but it's a broadening of their human experience which they--we--might not have had for ten, twenty years or more, or never. Lots of people don't ever get that, kind of being shaken so much, and have to then say, "Well, what's important here?" So gay/lesbian people who have been through this experience have a lot of accumulated wisdom, which is a tremendous resource for those willing to listen and learn.

Hughes

Thank you.

Transcribed by Shannon Page

Final Typed by Julia Rechter

Interview History

by Sally Smith Hughes

Jeannee Parker Martin was interviewed for the oral history series on AIDS nursing because of her administrative role in providing home nursing and hospice services in San Francisco to people with AIDS from 1984 to 1994. Her introduction to AIDS occurred at Yale New Haven Hospital where she was AIDS Program Coordinator in 1983-1984. In contrast to the San Francisco epidemic, intravenous drug users were primary targets of the disease, although gay men also were afflicted. Her oral account of this period includes comments on AIDS diagnosis, fear and stigma, and infection control precautions--themes which run through most of the interviews in the AIDS series with nurses and university and community physicians.

In 1984, Martin moved with her physician husband to San Francisco where she quickly found employment in the AIDS Home Care and Hospice Program of Visiting Nurses and Hospice of San Francisco, which had been providing services to people with AIDS since 1982. She tells from an administrator's perspective, rather than a care giver's, of the issues she faced and mastered--fundraising, staff hiring and training, program eligibility, staff support programs, and so on. Martin also provides a down-to-earth description of what services a visiting nurse might provide on a typical home visit to a person with AIDS. She also outlines the program's interactions with AIDS activities at San Francisco General Hospital, the San Francisco Health Department, and other city institutions central to the AIDS epidemic.

The Oral History Process

One interview was conducted in Martin's office in San Francisco at The Corridor Group, a business providing consulting services in health care, of which she is vice president. Personable and businesslike, she answered in forthright fashion and returned the edited transcript with a few comments and changes.

This oral history is of particular interest because it is the only one in the AIDS series which focuses in on the third "leg" in the San Francisco model of AIDS care, namely home and hospice nursing for people with AIDS. Because of this fact, it is an essential addition to the many series histories describing the other two "legs" of the model, outpatient and inpatient AIDS services at UCSF/Parnassus and San Francisco General Hospital.

The Regional Oral History Office was established in 1954 to augment through tape-recorded memoirs the Library's materials on the history of California and the West. Copies of all interviews are available for research use in The Bancroft Library and in the UCLA Department of Special Collections. The office is under the direction of Willa K. Baum, Division Head, and the administrative direction of Charles B. Faulhaber, James D. Hart Director of The Bancroft Library, University of California, Berkeley.

July 1998

Regional Oral History Office
The Bancroft Library
University of California, Berkeley

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I Education

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Hughes

Start back, would you please, with where you were born and educated, and your career up until the time you first became aware of the AIDS epidemic?

Martin

I was born in Delaware, Ohio [in 1955], which is a small town about twenty-five miles from Columbus, and was educated in the Catholic and public school system there. I then went to college at Georgetown University in Washington, D.C., where I initially was in the School of Languages and Linguistics, and then transferred to the School of Nursing and essentially double-majored in languages and nursing, although that's not an official designation at Georgetown. You can't double-major across two schools; only in one school. I graduated from the School of Nursing in 1978.

While I was at Georgetown, I was very interested in international programs, so I did some traveling and one study abroad semester at Universidad Catolica in Quito, Ecuador. Then after I graduated in 1978, I took a group of nursing students on a practicum semester to Guatemala. So I spent about a total of two years in Central and South America. The relevance of that has to do with my interest in different cultures, and how I ultimately got involved with AIDS work.

Then, after Georgetown, I worked as an Assistant Nursing Coordinator at Georgetown University Hospital from 1979 to 1981, prior to going to graduate school. I decided to get my master's in public health administration, because I felt it was the broadest base of information that I could get at that time. So I studied epidemiology and public health administration while I was at Yale University School of Epidemiology and Public Health, from where I graduated in 1983.

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II The AIDS Epidemic

AIDS Program Coordinator, Yale New Haven Hospital, 1983-1984

First Encounter with the Epidemic: A Book Project

Martin

My entrance into AIDS is purely coincidence, not probably as coincidental as for some other people. I needed a job in New Haven the year after I graduated, as my then-boyfriend, becoming fiancé, now husband [Michael J. Martin], was finishing up his residency. So I applied for a job at the hospital as an infection control coordinator. Because I had just finished my M.P.H., that was a somewhat likely transition at that moment, although I never had any aspirations to be an infection control coordinator. I was never in the mode of being just a staff person.

The person who interviewed me said, "We have this position we're creating for an AIDS program coordinator here at Yale New Haven Hospital, and we think you'd be a good person for it. Would you be interested?"

Hughes

Now, this is 1983?

Martin

Right. I had just finished graduate school. It was May or June of 1983.

Hughes

Had you heard of this disease?

Martin

Yes, and that's why I became probably the most qualified candidate. My husband, who was a resident, was very close friends with an immunologist, John Dwyer, who is Australian. He was on the faculty at the School of Medicine at Yale, and now is also involved in Project Inform here in San Francisco, many years later. John Dwyer and Mike, my husband, were very interested in this disease. John had seen patients that were coming down with

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AIDS, and of course, it was all perplexing then and nobody quite knew what was going on.

So they decided to write a book. I typed the manuscript for this book, which never was actually published--as far as I know, it never went anywhere. Typed it as the nice fiancée. [laughter] So the only reason I knew anything about AIDS was because I typed this manuscript, and I typed it with great editorial interest, not academic interest because of the subject, but because Mike was writing it and I wanted to make sure it was well written. So I paid a lot of attention to what it said, and of course, I was in public health school, so it was interesting from an infectious disease standpoint and so on and so forth. So I didn't just take an interest as a clerical support person; I took a great interest as an epidemiologist.

Hughes

What was the thrust?

Martin

Gosh, if I recall, they were trying to tell people there was this new disease out there; the intention of the book was to inform. I haven't really talked much about this book, and I don't know whatever happened to the manuscript. Mike probably still has it. They were trying to inform the public that there was something going on out there, and this is what it looked like. It was written for the public, not for the academic world, if I recall correctly.

Now, Mike has written another book, not about AIDS, that was definitely for the public arena, that was published, so I may be confusing the intention of the two books now ten, fifteen years later. But it was very interesting at the time, and I think that they just probably moved on to other things. For my husband, this was just a passing, "Gee, this is an interesting topic; I'm a resident,"--John Dwyer was an immunologist on the faculty--"so let's do something together."

Hughes

Is your husband now an immunologist?

Martin

No, he's a businessman.

Hughes

Oh, I see. [laughter]

Martin

He's also a physician.

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AIDS Program Coordinator

Martin

So when I went to apply for this job, which came up in the course of interviewing for another job, I actually was very familiar with what had gone on from '81 to '83, because they had done a lot of studies, and I may have read some of the articles for them; I don't really recall now. I knew a lot: I knew what had happened in San Francisco and Los Angeles. [tape interruption]

I interviewed for this position and took it because it sounded interesting, but more importantly, I needed a job to stay in New Haven for the year. My role was as the AIDS program coordinator for the hospital.

Hughes

Now, were you the first?

Martin

I was the first, yes. I reported to the director of nursing for medical/surgical services, but for all intents and purposes, I was working with this person, John Dwyer, in the Department of Immunology and with a physician who's an infection disease specialist by the name of Bill Green, who now is in New York. I have lost track of him.

Bill and John and I were, in a sense, a mini-team, because we had a great interest then in what was happening. I had a very interesting position as a nurse, and as a young woman--I was twenty-eight--in a heavily male-dominated medical environment. I had a lot of ability to coordinate their activities, because nobody really knew what was happening with AIDS. Everybody was interested and concerned, and probably there were subtleties of perplexity and fear. What did this really mean? Were they at risk? Nobody really knew quite yet. And I say that a little lightly and politely, but I think there were probably all these emotions mixed in.

So my role was to coordinate the services of any person with AIDS that came to the hospital, and also serve as more or less a clinical nurse specialist at the outpatient clinic. Yale New Haven Hospital was actually a very busy AIDS hospital. Gosh, I think there were hundreds of patients that we saw who were HIV-positive, although there wasn't the [HIV antibody] test in 1983-'84.

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Diagnosing AIDS

Hughes

How did you diagnose AIDS?

Martin

It was purely based on clinical indicators: lymphadenopathy, Pneumocystis--purely clinical diagnoses, because there was no HIV antibody testing then. John Dwyer, the immunologist, did T-cell testing on everyone. In fact, those of us who worked with John were always the baseline. As all these tests are done, they find baseline norms, and the people that are the baseline are people around them--assuming we're all healthy, I guess.

I drew lots of blood while I was there, and did physical examinations on patients who were coming into the clinics, and worked with another immunologist and medical staff who were there. Immunology fellows, infectious disease fellows, myself, a psychiatric clinical nurse specialist, and a social worker, formed a team. There probably were others, but we were the core team.

Physician Meetings on AIDS

Martin

Key physicians at the hospital met on a regular basis to discuss what was going on with AIDS issues, and I facilitated all those meetings at which usually ten or fifteen physicians attended.

Hughes

Were those meetings held on a regular basis?

Martin

Yes, they were regular. I don't remember how frequently, but weekly or biweekly meetings.

Hughes

Just physicians, or were there patient presentations?

Martin

No, these were just physician meetings. These were looking at what was happening. Probably to a degree we did some rounding on patients, although that wasn't the purpose. I suppose we did talk periodically about the difficult patient or the patient that we were concerned about. And we were concerned about everybody, because it was a handful of patients at any given time that we're talking about, so everybody knew them. I still vividly remember the names of the people who were our first patients there. I can picture them; they're very much impressed on my brain.

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Patients

Hughes

What demographic group did they come from?

Martin

Mainly IVDUs [intravenous drug users]. There were some gay and bisexual men. I would say that the heavy dominant group were IVDUs. What I am impressed with most this many years later is that there were IVDUs, but also, it seemed like there were a significant number of men who had other lifestyles: married men who also had this gay lifestyle in New York, and nobody knew in their family. And I have vivid memories of people about whom we had to keep everything confidential, even if their family asked us, who didn't know they had AIDS. I'm sure that still goes on to a degree in some locations, but that stands out in my mind.

But the IV drug users were the predominant group, and it was very mixed. There were men, women, and children who were impacted. The people who were gay or bisexual were less significant in my mind. They may not have been, but they are in my mind in terms of who we dealt with. Some people that stand out were also members of Alcoholics Anonymous and had buddies. They had pretty good, loose, informal support networks through AA, which was helpful in finding people, because we would expect them for clinic appointments, and they wouldn't come in, so we would call their buddies and see if they had heard from them. A lot of people were essentially homeless that we were working with. Maybe they would be in a hotel or an apartment for a while, but they were very transient.

Hughes

Were some of these people inpatients?

Martin

Yes. The clinic was one population, and then we had inpatients. There were probably eight to ten inpatients at any given moment.

Hughes

Scattered throughout the hospital?

Martin

Probably to a degree scattered, but most of them were on the medical floor. There was some concentration of patients, mainly because they had a medical illness, so that's where they were located.

I saw every single patient almost every single day. I would go in; I would visit with them. It was somewhat of an interesting role, which now would not exist to the degree that I had this role. I tracked their diseases; I did a little bit of infection control in terms of tracking what was going on with them; I visited with them, understanding where they were socially, making sure that their needs were being met, even though we had a social

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worker. I also rounded with the immunologists or their [physician] attendings.

So I had an overall global picture of every single patient, and then people would ask me about them. I filled a role that today would not be accepted or tolerated because of budgetary constraints, but at that moment in time, I served kind of as clinical nurse specialist and overall coordinator of these various patients. And I knew about all of them. If anyone asked me at any given time, I knew this, this, and this. I kept a very good notebook about them, which somebody from Yale asked to use for a dissertation. I kept a diary for that whole year, but I can't locate it. I know I never threw it out; it's in storage.

Hughes

What sort of things are in the diary?

Martin

I kept everything that I did every day. One of the roles that I played was providing counseling and guidance to community members who called in and had questions about AIDS. So we regularly got calls about people who had their T cells tested, and they wanted to know what this meant, and I was the confidential respondent.

Hughes

Did you take on that role because there was a need, or was that actually part of the job description?

Martin

Well, the role was undefined. I was the first person, so I think they said, "Let's see what this needs." I was energetic and interested and excited, and I have a tendency to be a little bit of a workaholic, so I was willing to do a lot of different things, and it didn't matter to me that it was or wasn't in a job description. I don't know if I had a job description. I probably had something, but I'm sure that it was a moving target, just because it was new. It was whatever the need was.

Hughes

You were obviously picking up on patients' social needs as well as medical. Is that a common approach in nursing?

Martin

Well, it's very common, and it's also very common in home care, because in home care, you've got to assess a very different environment. You're going to someone's home which may be this big: their bed is right here, and their dresser is here. Then you're out their door, because maybe they're living in a room of a garage. So you've got to assess quickly what the environment is, and what it can tolerate or not tolerate, and what the person's needs are in that environment.

Hughes

But you hadn't had that experience yet, had you?

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Martin

Well, only to the degree that I had worked in Central America, and that was very much in community health. I had this great multicultural interest. AIDS patients certainly were a group perceived to be from a very different culture. So I think, initially, I was able to tie that in. Most people would say I'm very accepting. I hate to use the word tolerant, because I don't think that sounds accepting. It's sort of like saying, you live with it and it's okay. I think accepting is believing that other people have needs that are different.

Hughes

So you didn't have any trouble working with a stigmatized population.

Martin

None whatsoever. I suppose some people would say I was just very naive, but I don't think it was naivete as much as lack of knowledge. But I learned a lot, and as a part of this role, I got very involved in a group called AIDS Project New Haven, which was a group of gay and bisexual men in the community. There were a few other people, but mainly that was the group, although the people that we were seeing in the hospital were not always gay or bisexual men, and usually were not from that socioeconomic group.

New Haven is a very interesting community. There is Yale, but it's a very impoverished community, very drug-ridden. Not that they've made a lot of changes, but it's been a hotbed for the public health department there to do studies on the drug-using population, and on the maternal-child population. They've done lots of studies on teen pregnancies. It's a city where you'll be on one corner and it's a very low socioeconomic area, and the next corner is actually fairly affluent. I always found that very interesting, because I hadn't lived in an environment like that. In fact, I lived right next to the hospital, which I didn't know was the highest drug-dealing corner in the city. And when people who were from there learned where I was living, they said, "That isn't where you should be living." But it was a nice apartment building, so I stayed there for a while.

Fear and Homophobia

Martin

We tried to work with the local VNA [Visiting Nurses Association] a little. We tried to work a little with the local hospice provider, Hospice of Connecticut in Branford, which was very renowned in the nation for its pioneering work in hospice care, but yet was very resistant to providing services for AIDS patients.

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Hughes

Why?

Martin

I think there was great fear, not just for AIDS but because it appeared that this was a gay and bisexual disease, and people didn't understand. They just didn't know what to do; they were afraid that if they were around people like this, they would become like this.

Hughes

Was it fear of infection?

Martin

I think there was a fear of the disease and infection. There was this other fear, though, that was homophobia, which persists. I think that's still a real problem today.

Hughes

What about you?

Martin

You know, it just was not an issue with me. I don't think I knew what homophobia was. It wasn't part of the way I thought about things. I'd been around all these people all my life, in my travels and in my work, that had different values and different ways of doing things, and this was just one more. So I don't think homophobia was ever an issue.

Infection Control

Hughes

What about fear of infection?

Martin

I don't think it was a real issue, because I was learning then what they believed to be the modes of transmission, that really haven't changed. I believed that it was important to take all the infection control precautions, and I was very cautious with everything. I was drawing blood. At first, we didn't wear gloves, and then they said we had to wear gloves. And that was a long time ago, before infection control processes related to AIDS were understood. Every time we went into a patient's room, we had a mask, gown, and gloves on.

Hughes

Really?

Martin

Absolutely, and that was absolutely a standard that we maintained. When people didn't, I was kind of a watchdog, so I would say, "Listen, I noticed you--." In retrospect, we know that all wasn't necessary, but then we didn't. There was a lot of caution. And amongst the team, we were all pretty much on the same wavelength. I think everyone pretty much said, "We've got to follow these

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precautions. But also we want to deal with the disease socially as well as environmentally."

Hughes

Now, these infection control guidelines had been set up by the hospital?

Martin

These were just standard infection control guidelines. Somebody had an infectious disease: you wore gloves; you wore a mask; you wore a gown.

Hughes

So the guidelines weren't particularly AIDS-related?

Martin

Oh, they weren't at all. Everyone was on total isolation, or whatever it was called then, where they weren't allowed to leave their room without a mask and a gown on, and we weren't allowed to enter their room without a mask and a gown on. So it was just like those pictures that you see in infection control videos, where somebody comes in and they're garbed. That's what we looked like. But it was important then.

Hughes

Was that upsetting to patients?

Martin

At that point in time, I'm not sure that it was so upsetting to patients, because everyone was a little uncertain about what was going on. I think depending on where you are in the country, today even, there's a different level of awareness.

Hughes

Even amongst the so-called stigmatized population?

Martin

I think so. That's my Midwest upbringing, but I think there's a lot of tolerance for, "This is the way it's got to be, so what's the big deal here?" There's still a lot of tolerance for that in certain populations. If they're offended by it, they don't say anything, which isn't necessarily good, but if they're offended, they take it as part of, "This is the way it should be."

For example, if I was in the hospital and somebody said, "You have to wear a mask, gown, and gloves, because we don't really know how this [disease] is going to spread," even if I was offended by it, I probably would say, "I understand, and that's okay." And not make waves about it. That's probably a lot of how it was then, that many years ago. I think the social workers had more difficulty, and probably understood the social, psychological dynamics more, because they would in fact go in to patients' rooms without mask, gown, and gloves on.

Hughes

Did you reprimand them?

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Martin

Yes. We had to. It was my role to say, "This isn't appropriate at this point; we don't really know about transmission of this disease." I don't remember there being issues.

Hughes

In San Francisco, many of the care givers were gay. I assume that wasn't as true of New Haven.

Martin

That might have been true. I can't recall frequently seeing gay couples come in to the clinic, for example. And on the clinic staff, there was nobody that I recall that was gay themselves. They may have been--I don't recall.

Hughes

They weren't making it obvious, if that were the case.

Martin

Oh, no. I'm sure at that point they weren't.

I created a role for AIDS Program Coordinator, and then I left. The person who followed me was not the right person, and then the person who came next was in the role for quite a long time. Then I think things began evolving in terms of needs at the hospital and how things were handled.

Hughes

Were you communicating with the CDC?

Martin

Well, to the degree that we filled out reporting forms to identify people with AIDS.

Hughes

The CDC wasn't an occasional presence in the hospital?

Martin

Not that I recall. "60 Minutes" was. [laughter]

Hughes

What was "60 Minutes" interested in?

Martin

They interviewed the immunologist for a program on AIDS. It was "20-20" or "60 Minutes."

Public Speaking

Hughes

Which indicates that your program had some visibility.

Martin

I think it probably had quite a bit of visibility, primarily because it had some pretty high-profile people who were interested and participated in outside activities. For example, I spoke all the time that year.

Hughes

To what kind of groups?

---

Martin

Well, local groups, from home care to hospice providers to local businesses to going down to NIH for a meeting. I had never done anything like this before.

Hughes

What was your basic message?

Martin

We were educating about AIDS, just basic, "This is what AIDS is; this is how it's transmitted." It was a basic AIDS 101 course. The reality is that we didn't know a lot more than the audience; we just knew a little bit more, and we had some hands-on experience. But gosh, I spoke a lot. Then there was another person in the state, Bill Sabella--and Bill died about two years ago. He was in my class at the School of Epidemiology and Public Health.

##

Martin

His partner, Al Novick, who's at Yale, did a lot of very forthright sex education for people in the community, and was very controversial at the time, and probably still is. He's a controversial type of a person in his mannerisms and his mode of operation, I would say. Al taught me a lot about AIDS and how this disease was transmitted amongst gay and bisexual men. I mean, I didn't know. It just was not in my lexicon, and he really taught me and a lot of other people to understand. This was about a population that we didn't really know that much about.

Hughes

Does New Haven have an organized gay community?

Martin

Well, at that point in time there was a somewhat organized community, because they formed AIDS Project New Haven. But today, I would assume it's probably like many communities, where there's an openly gay population. It's an academic community, and more tolerant probably, accepting.

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III Visiting Nurses and Hospice of San Francisco, 1984-1994

Job Search and Hiring

Martin

And then I left my job there and moved out to San Francisco.

Hughes

Why San Francisco?

Martin

My husband got a fellowship at UCSF [University of California, San Francisco]. He was a Mellon fellow in epidemiology. As a part of that program, he got his M.P.H. [master's degree in public health] at [UC] Berkeley, and then while he was getting his M.P.H., he got his M.B.A. [master's degree in business administration] at Berkeley. The Mellon Fellowship was a joint program between UCSF and Berkeley.

When we moved out, I wasn't really sure what I was going to do. I had contacts at the Institute of Health Policy.

Hughes

So it wasn't necessarily going to be nursing?

Martin

Well, no, I had my master's in public health, and I was open to suggestions. I made a lot of contacts with people that people from Yale had told me to get in touch with. I was looking in the newspaper for a job. I didn't know if I wanted to stay in AIDS work. Is this really what I wanted to focus my career on? It had just been a job for me, albeit an interesting one. Although I was very connected to the people and very interested, and we all had a very good rapport, it still was just a job.

When I came out here, I applied for a variety of jobs, all of which I was offered. But the most interesting one was as the AIDS Home Care and Hospice Program coordinator at Hospice of San Francisco.

Hughes

Now, why did you think it was interesting?

---

Martin

Well, I'll tell you. I went to the interview, and I was pretty East Coast in my demeanor, with my proper suit and my little briefcase. Not that I still don't dress that way--this is Friday, and we're a little more casual on Friday [Martin was dressed in slacks]. It was a team interview, and everyone was very, very friendly. There was a dog in the interview, and it seemed like a fun job. It seemed like it would be very interesting, and it was something I had just done, so I was sort of familiar with AIDS. By far, I was the only person that they had interviewed that seemed to have this much knowledge for this position and any academic credentials. That was probably part of the reason they hired me. So I got the job.

Director, AIDS Home Care and Hospice Program, 1984-1991

Martin

So I took this job as AIDS program coordinator, and that was the first AIDS program coordinator that Hospice of San Francisco had had, and the first AIDS program coordinator for a hospice program in the country. The executive director [Hadley Hall] of the corporation, which was VNA [Visiting Nurses Association], Inc., was a very active member of the national and local home-care community, and had been very involved politically in getting legislation through and getting activities going. So he was instrumental. JoAnne Handy hired me for that job, and we've been close colleagues ever since.

She reported to Hadley Hall, who was instrumental in getting me involved in the community. Not that it wasn't part of my demeanor anyway. But I never would have had reason to do that if somebody hadn't encouraged me, I suppose. So he got me involved in local politics, meaning the public health department politics, not city. Well, to a degree it was city politics. I mean, I was meeting with everybody within a month of the time I was there, because this position and the program were publicly funded. It was a grant through the City and County of San Francisco.

Soon after that, I was speaking at national home-care conferences, because Hadley had said, "This person has got to speak at these conferences." And I loved doing that stuff, so it was just right up my alley. So of course, I took the ball and ran with it.

We had a program to provide services to people with AIDS in their homes, and it was an interdisciplinary team approach to care. We modeled the approach after the hospice program, which is an interdisciplinary team approach to care. We had a lot of AIDS

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patients, but it was still a very small program, not much funding. We went back to the city and we said, "The only way this is going to work is if we get more funding. We should model it after the hospice program, and we'll get funding whenever we can from Medicare and Medi-Cal and private insurers."

We got the funding, and that funding continues today. There is enormous funding support from the city to what is now Visiting Nurses and Hospice of San Francisco. So we developed a team approach, and that team then served the needs of people with AIDS in their homes. We provided nursing, social work, home health aides, a physical therapist or rehab[ilitation] therapist whenever necessary, volunteers, spiritual care counselors and bereavement counselors.

The key element to that program, and the key element, I think, to why the San Francisco model works is because of the attendant care program that we established at VNH [Visiting Nurses and Hospice] that started in 1984 to complement the hospice services. Without that attendant care program, without the support that we provided to patients at home, patients would never have left the hospital. Nobody else was serving these patients at home. They were staying in the hospital for weeks and weeks. It was common then. And when this program started, we started shifting people out of the hospital and working with them at home, allowing them to remain at home. We administered medications or helped them understand the medications, helped them with transportation to and from doctors' appointments, et cetera. So it was really a very important program.

The key element of that program was the attendant care program, because patients had lovers; they had family members; they had all kinds of people who were working during the day who weren't available to stay with them, and the patients were frail; they were often demented, and needed somebody with them.

So we were able to get a whole group of people out of the hospital and sometimes prevent them from ever going to the hospital, so that they could get their care at home. I think strongly that the program kept people out of the hospital and kept the costs of care lower. I don't know if you're looking at articles on cost-of-care issues. There aren't good ones, and there aren't a lot, but the ones that are out there clearly document that this out-of-hospital care was important to keeping the costs of care down.

And I think we can talk about the San Francisco model. There's the prevention side, and the education side that the San Francisco AIDS Foundation provides, and there's the volunteer

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support that Shanti Project continues to provide, and then there's the AIDS Health Project that provides mental health services to people with AIDS, and so on and so forth. But without this home-care program, none of those other programs would have worked.

It was Hadley Hall's leadership that got it going. It's great for me to take a lot of credit for it, but Hadley was the one who went to the city in the first place and said, "Listen, we can't do this without some funding." He knew [Assemblyman] Art Agnos and said, "Listen, Art, we need to have some money for this program." He went to [director of the Department of Public Health] Merv Silverman at the time and said, "We need some money for this program." And they gave us the money for that program. If it hadn't been for Hadley's pushing them, the program wouldn't have started.

The program actually started before I arrived, and it was only attendant care. It was a subcontract that the then Hospice of San Francisco had through the Shanti Project. Somehow, the funding was related to Shanti, and it started in the spring of 1984. I came on board in August. They had expended all of their resources by mid-August. They were providing twenty-four-hour-a-day care to anybody that needed it, so they had spent all their resources. When I came, I didn't know that they had spent everything, so there was actually almost no money immediately after I arrived.

So, of course, I was the person charged with figuring out how we were going to keep the program going. So from there, we got more money, we created a better system of accounting for services we were providing, and were able to keep thousands of people out of the hospital.

Executive Director, Hospice Programs, 1986-1991

Integrating the Hospice and AIDS Home Care Programs

Martin

That program continued to grow, and in late 1985, the Hospice of San Francisco traditional Medicare program closed because of a Medicare dispute, so the only thing that existed there was the AIDS program. And shortly thereafter, we restarted the hospice program. It was a matter of shifting things around and working this dispute out with Medicare. In 1986, we merged with what is now California Pacific Medical Center. In early 1987, the Medicare program restarted. The AIDS program always was there, but I was placed in charge of all the hospice programs.

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So at that point in time, we collectively started looking at how we should integrate the teams of Hospice and the AIDS Home Care programs. We thought such integration would help prevent burnout that was occurring in staff, and would potentially help to attract more staff to work in the programs. There would be less problem with burnout and difficulty with staff caring for a very challenging population; the patients were physically, mentally, socially, and financially impaired. They just needed so much, and continue to need so much. There are different resources now, or we understand better how to use those resources, perhaps.

So we actually integrated the AIDS Home Care and Hospice teams with the traditional hospice program. Over time, we reestablished these programs, so that there was a separate AIDS Home Care Program and a separate Hospice Program. It's a technicality in administering the program, but I think we've really been able to look at the AIDS Home Care and see what worked and what didn't work, and have been able to provide insight for the nation into how to provide services to people with AIDS at home. I probably have done more than 300 or 400 presentations on AIDS over the course of a ten-year period. I haven't done so many in the last couple of years, but prior to probably two or three years ago, I was speaking as much as two to three times a month.

Hughes

On the home care aspects?

Martin

Yes. Sometimes it was four or five presentations in a couple of days. So I did a lot of speaking.

The program itself was important because of our attendant care program and the staff nurses who were real specialists in AIDS care. Without the attendant care program, though, I believe it wouldn't have worked. We would have just been another home-care program relying on Medi-Cal and Medicare and not been able to provide as much service.

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Obtaining Additional Funding

Hughes

I have a letter and proposal here from Hadley Hall that's written to Volberding in response to a letter from Volberding.

Why did Hadley became aware that there was a problem?

Martin

Well, I actually know why. In 1981, Hospice started seeing AIDS patients. We started getting referrals into the Hospice of San Francisco programs, and they became more and more challenged to provide services to people with AIDS, because they required so much support. There was no funding from Medi-Cal and Medicare to provide the required support to keep patients out of the hospital.

Hughes

That is a problem Hadley addresses. [tape interruption; Martin reads documents]

Martin

There was already funding for attendant care at VNA through the Shanti project at the time this letter was written, and additional funding was received for a five month project. This $384,000 was the basis of the project when I came on board, August 15, 1984. Maybe it was funded in July, but I came on board in August. It ended in November. We had run out of money by the time the end of the program had arrived. And that's when we started getting this other funding, $311,000.

Hughes

That letter raises the question of which way the problem originated. It could be that people such as Volberding at San Francisco General prompted the community response, or it could have been apparent in the community, namely, to Hadley Hall. This letter obviously responds to correspondence which I've never seen from Volberding.

Martin

Right.

Hughes

Was this need first perceived by Hadley Hall, or was he prompted by the concern of the staff at San Francisco General, which had to find some way of caring for patients when they were discharged?

Martin

I think it's probably hard to know which was first, the chicken or the egg, because the hospital was discharging patients, and the VNA was seeing patients that were discharged. The complexities of

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care were great, so VNA was saying, "We can't do this unless we have more money," which caused a problem at San Francisco General. The change in policy was that they were not going to accept patients who didn't have full coverage unless they got more money. And that prompted this grant application: "You give us a project amount, and we'll care for the patients within the project budget, but we don't want this to be a fee-for-service project." And that project-based program is what worked for many, many years. I think now they've reverted to a fee-for-service project.

Hughes

Really? Because one of the points that was made in the grant application was that the fee-for-service method of payment produced a lot of problems--cash flow problems, training problems, etc.

Martin

Yes. And it's contrary to what is being done now on capitated arrangements. What people are doing in capitated arrangements is saying, "Here's your lump sum of money for this population and you take care of them, whatever their requirements are; it's your problem, not ours." Fee-for-service says, "Your incentive is to make as many units of service as possible, because we're going to pay you by the unit of service," which in home care is a visit. So the fee-for-service system has less incentive to be cost effective, even though there are controls over it in managed care.

Differentiating and Amalgamating Home-based Programs

Hughes

How do you differentiate the activities of the three organizations that are involved in AIDS community care: the VNA, Home Health Services of San Francisco, and Hospice?

Martin

You're taking information from the 1984 letter, which didn't exist after that. Well, there's history around VNA of San Francisco and its mergers. In 1981, the San Francisco Home Health Service merged with Hospice of San Francisco, and in 1983, those services together merged with VNA of San Francisco.

The parent corporation became known as VNA, Inc. VNA of San Francisco provided traditional intermittent health services, which means people whom we expect to get better are going to get services. Hospice of San Francisco provided care to people who were terminally ill, and San Francisco Home Health Services provided adult day health care services. So they didn't provide home health services after 1984. In 1983, they provided adult day health and social services to seniors. It was a senior program.

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The problem that is expressed in this is that, in 1983, the city was working with VNA of San Francisco and Hospice of San Francisco. Even though it was one corporation, it was two different subsidiaries, and that was confusing. Hadley raises in this letter that that was confusing, so you give us a lump sum, and you'll only have to deal with the AIDS Home Care and Hospice Program, which is what is proposed in here. He says, [reading proposal] "To solve some of these problems, it has been proposed that an AIDS Home Care Unit be established within VNA of San Francisco. This unit will be responsible for providing both home care and hospice care for patients with AIDS. The City has been asked to finance the cost of the actual team of nurses, social workers, home health aides, attendants and others who are needed to carry out the work of this unit."

AIDS patients then went to this program, once this funding was granted--well, initially, it wasn't quite that clear-cut. But after a certain point in time, all the AIDS patients went to the AIDS Home Care and Hospice Program.

Hughes

Why wasn't it clear-cut immediately?

Martin

Well, in 1984, when the funding first came in, the funding only supported care for terminally ill patients, so the intermittent patients were still cared for in what was then called VNA of San Francisco. So VNA cared for some, and Hospice cared for others--the same corporation or same parent, with two subsidiaries. They were in different buildings.

Hughes

What was the incentive to combine all patients in one program?

Martin

Well, two separate programs were inefficient and less effective. One group of patients was being seen by staff who really didn't have any expertise nor desire any expertise in this disease, and felt this wasn't what they wanted to be doing. We had this pot of money in our program, so we felt if we combined the programs, it would be better for the patients and possibly better for some staff.

Because Hospice of San Francisco and the AIDS Home Care Program got all this extra funding and a lot of attention, they were seen as an elitist program, and there was a lot of tension between the intermittent program and the hospice program. In 1986, we moved into the same building and began to break down some of those barriers. We all moved into 401 Duboce, which is where Maitri AIDS Hospice is now, at Church and Duboce, and then things

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started to change pretty dramatically. By that time, we had already created the AIDS Homecare and Hospice Program, so every referral for AIDS services came to the same unit, essentially came to the same intake person, et cetera. And then when we moved to the same building, it was even easier, because tensions were less, since we could be face-to-face and everybody saw each other.

So there wasn't confusion after a while. But in the beginning, it wasn't so clear-cut, because there still was a hospice program that got all the funding, and an intermittent program that didn't get any funding. And unless AIDS patients came to Hospice, they weren't going to have access to the extra funding, because it was designated money.

Hiring and Training Staff

Hughes

Did you have to hire new people and train them? Taking care of AIDS patients requires special skills.

Martin

We did hire all the staff, starting August 15 of 1984. I came on board and a home health aide, Beatrice Autrey, came on board at the exact same time. And after that, I hired all the staff for the AIDS Home Care and Hospice team.

Hughes

What were you looking for?

Martin

Well, typically we were looking for people who had experience in dealing with terminally ill patients, cancer-oncology-pain-management-symptom management expertise.

Hughes

Could you find such people in enough numbers?

Martin

Oh, yes, we had excellent staff. In fact, we really had terrific staff. At that time it was a very small team, so everybody knew each other very well. It was like those first AIDS patients: you have vivid recollections when the numbers are smaller. The team was excellent; we had excellent nurse clinicians, social workers, and home health aides. The rehab therapists weren't really part of the AIDS team; we purchased that service from the VNA component, from the intermittent side.

The volunteers were very dedicated to caring for people with AIDS, many of them from the gay population here in San Francisco.

Hughes

How were volunteers recruited?

---

Martin

Well, probably in a variety of ways. By word of mouth, and we also distributed some fliers, advertising for volunteers. Periodically, we had an article in the paper or an advertisement in the BAR, the Bay Area Reporter. We may have even had an ad campaign for volunteers at one point in the BAR.

Hughes

Was there a training program?

Martin

Yes. Every three months, we conducted a volunteer training. And then whenever we had a new staff member, we did an AIDS- and hospice-specific orientation for them. Over time, we developed a videotape that was specific to the home care of people with AIDS, the AIDS Home Care and Hospice Video. We also developed a manual, the AIDS Home Care and Hospice Manual, which was published in '87 and again in '90.

The video and manuals were really meant to educate not just our staff. These products were funded by a grant that was intended to disseminate information about AIDS. It was a Robert Wood Johnson grant that initially supported it. That helped disseminate information around the country.

Home-Care Visits

Hughes

What sorts of things would happen on a typical visit to a patient with AIDS?

Martin

Well, today, a typical patient is a person who is getting infusion therapy at home and who, as always with AIDS, has multiple infections at the same time. It's hard to describe a typical day. But a nurse would visit that patient, do a complete physical assessment on the patient, determine what kind of treatment planning they need for their care to remain at home. So if they are getting infusion therapy, which is ordered by the physician, then the nurse would have to plan how frequently nursing visits will have to be made to maintain the person at home, how often the infusion and pharmacy will have to be delivered to the home, and how that will be delivered.

The patient, because he's frail, might have a decupitus ulcer, and the nurse might be dealing with nutrition as well as wound care issues related to the decupitus ulcer. She might be dealing with respiratory illnesses, so maybe doing some pulmonary

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care for that patient. Then she's also coordinating the care that the other staff are providing for that patient.

Because I'm not a practicing clinician, I'm not going to give you the same sense of what they do as an active care nurse would. I'm really an administrator. The nurse then would coordinate with the physician to make sure the orders and the treatment plans are in place, and also coordinate with the other team. Most patients would have a home care aide coming in. The home care aide provides personal care assistance to that patient, and would come in as much as four or five times a week, depending on the needs of the patient.

Hughes

To do housekeeping?

Martin

No, to do personal things, like bathing, making the bed, maybe doing range of motion if the patient is debilitated and needs some assistance with strengthening exercises, and might do some light housekeeping. They're not housekeepers. They might prepare meals, and they might even run errands if it's related to the illness.

Then there are volunteers that might come in and sit with the patient, provide the family or a loved one with some respite. Rehab therapists might come in if the patient has a need for strengthening exercises, or might be losing their vision and might have a need for reevaluating their home environment, so that they have the right items to facilitate them staying at home, feeding themselves, caring for themselves.

Hughes

Who makes the decisions about who comes and when?

Martin

Typically, the nurse case manager will make the decision up front initially, and then a rehab therapist or a social worker will make determinations as to what's needed by these disciplines. That's the ideal situation. The payer also makes determinations.

##

Martin

Often what the patient really needs is custodial care, and the insurer may not allow for custodial care, because custodial care is really personal care assistance and supervision, and insurers don't want to pay for that, even though over time, it might prevent the patient from being in the hospital. Great inroads have been made, and because of capitated arrangements, the provider may help to make some of those decisions now, putting in lower-cost care versus a nurse.

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The other thing for many patients who have ongoing needs is the residential care system in San Francisco. There's Coming Home Hospice, that opened in 1987, which is an unbelievable residential care program that's part of VNH.

Hughes

Why unbelievable?

Martin

It has staff that meets the needs of people with twenty-four-hour care needs. It's a facility with a great setting that combines a residential feel with an institutional environment, so patients are allowed to still remain out of the hospital and get group-related care, because they're in a residence. It's not as costly. So they might be prevented from going to some other environment, or being at home in a very unsafe environment.

Hughes

Now, did the disease push developments in certain directions that were new to home care?

Martin

The disease is multifaceted. In other chronic illnesses, with the elderly, there are usually multiple problems. The patient may have cardiac disease, diabetes, and a hip replacement. They also may have limited finances. They also may not have the support structure to help support them at home.

I think the difference with AIDS is the acuteness of all the problems at the same time. A patient might have three or four or five or six diseases that are really acute at the same time, and over a very brief period of time. Somebody who has cardiac disease and somebody who has diabetes have had those chronic illnesses for years. They have maybe not adjusted to those illnesses, nor may have their families, but they've had them for many years.

Now we have some people who have been diagnosed with AIDS for ten years, but not very many. You're usually talking about a two- or three-year period where all their systems just start to fail. And they're young. And they're not at a point in their life where they're thinking of all these things happening to them. So I think the difference is the severity and the amount of diseases occurring at once. Therefore, in home care what's impacted is the amount of service that's needed, which is different in that regard, although not new. You could say the same thing about a chronically ill elderly patient who has many, many needs. I think what pushed the buttons was the severity and the complexity and all these things going on at the same time. So not only does a patient have Pneumocystis, but also he's losing his vision, and he has neuropathy so he has difficulty walking.

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You can compare AIDS to Alzheimer's disease, where multiple systems start to go, and they become demented. That is very, very difficult for family members, who see subtle changes, and then suddenly the person is very debilitated. It may occur over twenty or thirty years. In AIDS, it occurs over just a few months or over two or three years, and I think that's the difference.

Eligibility

Hughes

What were the criteria for eligibility for the AIDS Home Care and Hospice Program?

Martin

The person had to be diagnosed with AIDS and to have a need for skilled nursing services, which is a technical definition.

Hughes

That was it?

Martin

Those are probably the primary ones. In the hospice program, there are more requirements. You have to have a disease prognosis of six months or less.

Hughes

Was there ever a problem in defining who exactly had AIDS?

Martin

That's not really so much a problem in home care, because home care is not defined necessarily by the definition of AIDS. It's defined by the needs of patients and their requirements for skilled nursing care or rehabilitation services. So in social service programs, the definition of AIDS is more of an issue. In a home care program, the person would still be eligible for services if they met a certain set of criteria defined by their insurance provider based on skilled care needs. If they have AIDS, they would be eligible for certain insurance coverage, and also may be eligible for some additional funding. That now has to do with Ryan White Care funding and City and County of San Francisco funding.

Fear

Hughes

Was there a problem with fear amongst the care givers?

Martin

I don't think it was ever a major problem here in San Francisco. The biggest problem was the intensity of the disease; it really caused a lot of stress in the staff.

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On the other hand, in the staff that existed within VNH, there probably were some staff who made clear decisions that they didn't want to take care of AIDS patients. And it probably wasn't ever an issue, because we had a separate AIDS team, so if they didn't want to, it went unnoticed.

Hughes

They didn't have to.

Martin

It was never an issue. I wouldn't say that they wouldn't have had to if push came to shove, but they didn't have to since we had a dedicated staff.

Staff Support

Hughes

Was there a staff support system?

Martin

Well, we did a number of different things. We had a support group for every team, so there were as many as three support groups at one point in time for the staff who were providing services. Some of the support staff in the office were eligible to go if they wanted to, but typically, it was field staff members who used these groups for support. The volunteers also had support groups facilitated by an outside individual, somebody who was anonymous, supposedly, to the organization.

The other thing we did, and then we rescinded it--it took a very long time to rescind it--was we implemented a ten-hour-day structure so staff would work four ten-hour days and have one day off--essentially three days off a week. Not in a row, but three days off. That was a good system to give staff more of a break, but it's a terrible administrative problem, because all the time you're trying to cover somebody's caseload. So we tried to rescind that, and there was a great outcry amongst the staff, which one would expect. The staff eventually was allowed to continue working ten-hour days.

Teams

Hughes

How many teams were there?

Martin

It's a little confusing, because our teams were mixed. We had three teams, and those teams were mixed with hospice non-AIDS and AIDS patients. And then we segregated those out, so there was one

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AIDS home care team for intermittent patients. And then the hospice-appropriate patients were intermingled with the other hospice patients on the AIDS home care team. There were additional patients in the hospice program. So there was one team that was AIDS only, and then the hospice AIDS patients were intermingled with other hospice patients. I think this approach continues today.

Hughes

Did those teams stay fairly constant? I mean, was it the same group of people working together most of the time?

Martin

Yes. I'm not talking about a mini-team of two or three people; I'm talking about a team that's a unit: thirty to forty people who formed a team that covered the same geographic area. And that team cross-covered for each other. It was an interdisciplinary team of nurses, social workers, and home health aides; sub-teams would see the same patients. So there were sub-teams within a bigger, interdisciplinary team.

Hughes

A sub-team worked together.

Martin

Yes.

Hughes

And they knew each other.

Martin

Well, the bigger team also knew each other. It's just that there were only a few social workers, and there were a lot of nurses, so the social workers worked with a lot more nurses.

Interactions with Family Members

Hughes

How much interaction was there with family and loved ones?

Martin

All the time. I'd say that one of the biggest problems in terms of time management for the staff was the interactions they would have with family members. They had social concerns and psychological needs that needed to be addressed, so the staff had to deal with them. As I said earlier, at times, there's an acceptance of, "This is how it has to be." If you deal with an elderly couple that's expecting cardiac disease, for example, to be a part of their life at this time, and now they're deteriorating, there is a level of acceptance.

Whereas in this disease, AIDS, a family may not have known their son was gay, may have come from Ohio and maybe not known he had AIDS, and been dealing with this news for the first time. Or

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his lover, who may also have AIDS, is dealing with issues himself. So there are complicated psychological and social issues associated with AIDS that are different than dealing with the typical chronically ill patient.

If you deal with chronically ill patients, there are subtleties of age, preparation for the disease, and knowledge that you've been sick that help prepare yourself and others. And, if your grandfather has end-stage cardiac disease, that's something he'll probably tell you: it's not usually something he will hide because he's afraid of your reaction or embarrassed.

Whereas your son may have been talking to you for a year, and you didn't know he was really sick. The partner may also be dealing with very critical issues: the family is now coming, or the family won't talk to them, and complications of who gets ownership of this person's [the AIDS patient's] property. So there are different dynamics in AIDS.

Associations with San Francisco General

Hughes

What was the program's connections with the AIDS group at San Francisco General?

Martin

Very closely connected. I still remember the first day I ever walked into a Ward 5B meeting. Since the program started, there has been a very close linkage to San Francisco General inpatient and outpatient services, primarily because this program was able to fill a need that they had for home-based services, and we wanted to fill that need. So we developed a very close working relationship. In 1984, there was a small core group which was leading the way, I guess you could say. There was Alison Moed at San Francisco General, and there was Tim Wolfred at San Francisco AIDS Foundation, and there was Jim Geary at the Shanti Project, and Jim Dilley at the AIDS Health Project. We, at AIDS Home Care and Hospice Program, established a very close working relationship with all these groups, but particularly San Francisco General Hospital inpatient wards and ambulatory clinics.

Ward 86 after a while became the central focus of AIDS services there, because most patients came in and out of Ward 86 instead of the inpatient unit. So the working relationship continued to be very close with them. There have been challenges certainly, with different staffing and as the disease has changed. But I would say always the relationship has been strong, even if

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it's been challenged at different times. Challenges really have to do with control of patient needs. Who's the real decision-maker was the challenge that came up.

Hughes

So it wasn't a given that it was going to be the physician making the decisions?

Martin

Well, technically, yes, but practically, it was the case manager. There is a case manager over at San Francisco General, and then there'd be a case manager for home care. And who knew the most about the patient? It was a toss-up. I don't know. But that's where some of the pulls and pushes come, when you've got case managers who all know a lot about the patients, and they all know the right directions to go in. It's which is the right direction for that moment that becomes the challenge. Those roles as case managers were not easy to define, not that they weren't clearly defined. They just weren't easy, because one person is dealing in the home setting, and one is dealing with the patient at a clinical point in time, which is two different interactions.

Hughes

Did AIDS prompt greater problems or different problems?

Martin

Well, there's a whole different level of advocacy around AIDS than there is around some other illnesses. VNH (formerly VNA of San Francisco) serves probably 1,200 patients at any given point in time, and of those 1,200 patients, several hundred of them are AIDS patients. In the San Francisco community, there's a huge level of advocacy around services for people with AIDS that doesn't exist for people who have end-stage cardiac disease, who are debilitated, who don't have a spouse, who don't make any money any more; they're living off of limited Social Security incomes. There's just a whole different level of advocacy, and it's because it's a young group of people being affected and cared for by a young group of people who are interested.

There's a different level of advocacy when you see your partner sicken and die, or your staff person who's your age sicken and die, than there is if it's an older person. It's the same thing that happens with children who are sick: there's a lot more sympathy poured out to a child who dies of a childhood disease, versus an elderly person who dies from an elderly, chronic disease, even though each is equally important.

Hughes

How was your program related to the Department of Public Health?

Martin

The most important department at the public health department for us as an organization was, and probably continues to be, the AIDS Office. The AIDS Office was the linkage to our funding, so we had a very close relationship with the staff at the AIDS Office, and

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probably would still recognize each other's voice if we called each other up, because we were on the phone so often together.

Hughes

Over what issues?

Martin

Funding issues. We would say, "We need this, and don't bother us with these little picky things." We had a great need for money, and they had a great need for detail. There were all kinds of challenges around funding and service delivery issues. We were all new at this, so we were all being advocates for our own group. So we had a very close working relationship with them.

The Department of Public Health nursing department had a lesser role, because we really to a degree took over the role of the public health nursing department. Most of the patients in the early days that we served were really sick. I mean, they didn't have time to go to the public health department nurses. Now, the public health department is starting its own home-care program. They've always had a home-care program, but it never grew before now. We received the funding for AIDS care, so they didn't take these sicker, terminally ill AIDS patients.

I think, with the changing reimbursement patterns and changing emphasis on utilization patterns, that some of that money will shift back into the department. If I was in [San Francisco Health Department Director] Sandra Hernandez's shoes, that's what I would think of doing. And I know she's thought about it.

A public health nurse representative came periodically to our patient care conferences and then met with our intake coordinator --I'm picturing her coming to our office on 30th Street. But over time, it just didn't happen much. I think what the public health nurses were doing was different. They discharged patients to us, but we didn't discharge too many patients to them, because people with AIDS didn't stabilize and get better.

That may be different now, but I don't think it's probably dramatically different. Most of the time, once somebody is sick enough to come into a home-care program, they continue to be sick. There is some stabilization, but they're deteriorating, unfortunately.

Hughes

Who referred your patients?

Martin

I would say the bulk of the patients came from San Francisco General Hospital, and probably from another pivotal group, which is now called the California Pacific Medical Center [CPMC] Medical

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Group, where they see a lot of AIDS patients. Bob Bolan just moved recently [to Los Angeles], but he had been a key physician here for many, many years, and was affiliated with CPMC. Paul Volberding and Don Abrams were the two people that I probably had the most contact with, initially due to our relationship with SFGH, Ward 5B and Ward 86. After a while, we didn't have contact, because I wasn't involved at the clinical level and we didn't have so much need, but they probably were two key people in terms of how things developed and evolved.

The physicians, I would say in general, were from San Francisco General Hospital, and then community physicians. I'm not the best person to answer that question.

Hughes

How often would a physician be in contact with nurse about a given patient?

Martin

Well, for some patients as often as once a day; the norm was probably once a week. Every time a significant status change occurs in the patient, we're obligated to notify the physician. Now, if the patient has a change in medication needs, then we also have to get an order from the physician, and we can't administer it until we have an order. We can't get the medication until we have an order.

Hughes

A dynamic disease must place demands on both parties and require a quicker response than with most other average diseases?

Martin

Yes.

Hughes

And more often as well.

Martin

Yes, and that caused a great deal of stress and strain. Some physicians are very clear that it takes a lot longer to deal with an AIDS patient than it does any of their other patients. The patient takes longer in the office, and they get a lot of calls about the patient.

Hughes

Was the San Francisco General AIDS group easier to work with because they knew what kind of care AIDS patients required?

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Martin

Well, Ward 86 would be easier for that reason, because it has nurse practitioners that essentially are in charge of the AIDS patients. They're the primary care providers. And then there are attendings [attending physicians] that are there as well. But the attendings are a fixed set of physicians.

San Francisco General as a rule is very difficult to work with, because you have to have orders signed, and the resident physicians rotate, because it's a teaching facility. And often it's a resident who signs your order, and you have to have an attending sign orders for home care. You'd get a verbal order from someone, and by the time you got the treatment order back, or it was sitting around, that person had gone on to their next rotation, so you couldn't get it signed--all kinds of complications like that.

So from a home care provider standpoint, dealing with San Francisco General at one level was the best, and dealing with them at another was probably the worst.

Hughes

Did that mean that in some cases patients were not getting the medication that they needed?

Martin

I would say that there weren't very many cases where patients didn't get the medication they needed. We may not have gotten the signed orders in a timely manner that were required from a regulatory standpoint. We may have had a verbal order that Dr. John Smith ordered this at such-and-such a time and such-and-such a place, and called it into the pharmacy. So we got the medication. But from a regulatory standpoint, the home-care provider has to have a certain set of documents in the patients medical record.

Hughes

And those were a long time coming.

Martin

Yes. Those were the technical problems.

Other Community Support Agencies

Hughes

Are there other organizations that we should mention in this web of community support that we're describing?

Martin

I would say that from an historical standpoint, the San Francisco AIDS Foundation, the Shanti Project, the AIDS Health Project, Project Open Hand are very significant. It's hard to know if Project Open Hand will become less significant over time. I don't

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mean that food service isn't important; I think that Project Open Hand will have difficulty supporting itself over time, because it is a food service, and they probably don't charge enough.

Project Inform is a very important organization for providing information in the community, and an access point for people to gather information about treatments and experimental regimes. It's an information point.

Hughes

Did your program have a philosophy about alternative therapy?

Martin

There are two kinds of alternative therapies: experimental alternative therapies that are under a research project and are legitimate; and alternative therapies which might well be successful but don't meet regulatory requirements that we can then stand behind. Patients could choose to do those things on their own. We couldn't intervene.

A clinician (nurse or physician) might give you a different viewpoint on this. Val Robb at VNH of San Francisco might be a person for you to talk with. Val is an excellent clinician and has had a lot of experience. Mark Donnell at CPMC and Anne Hughes at San Francisco General would give you a good perspective. Anne hasn't done home care for a while, but Val and Mark really know home care and AIDS care.

Other linkages? Continuum HIV Day Service is cutting edge in adult day care delivery. They serve the frail, homeless AIDS population.

##

Martin

Continuum provides a natural continuum of ambulatory services, but the funding is limited. They are very highly recognized by the city health department and receive significant funding from it.

Hughes

Is that a new service?

Martin

No, it's been available since the late eighties, but it's only been the last couple of years that it's been positioned as a key component of the care delivery system. Continuum has a new executive director, William Glenn, who's a really terrific leader. Since he's come on board, I think they have made a mark. Before then, they struggled regularly.

There are other newer organizations. All the minority organizations play a very important role, but a different role. I have not been involved with those organizations, so I can't speak

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to their real value or what impact they've had in the minority communities.

Patient Preference for Home Care

Hughes

What does being able to remain at home mean to an AIDS patient?

Martin

When given a choice, people say they want to stay at home. In fact, a Gallup poll was done several years ago, in response to the long-term care legislation sponsored by Claude Pepper and known as the Pepper bill. The poll indicated that something like 65 percent of people wanted to remain at home. Home care allows people to remain with their loved ones, and also to stay in an environment that is the most familiar and cost-effective for the individual; or, if they're not allowed to stay there, they're able to shift into a residential care setting where they're still able to have their loved ones come in and out as often as they want. Home care provides an environment that's supportive, caring, humane. It's the environment that people really want at the end of their life or in a very difficult period of their life.

So it allows the person to remain in control of their situation. If you're in a hospital environment, you're really not in control. If you're in your home environment, you don't have to open the door if a nurse comes. So it's a problem for the nurse, but the patient can make that decision. If the patient is not mentally impaired, it's just the best environment for them to be in. It gives them control and support and caring of family and friends, and a home care team coming in.

Impact of AIDS on Home Care

Hughes

One last question: Are you aware of ways in which having to deal with AIDS has changed home care?

Martin

This is a very personal belief: I think the advocacy that we have had regarding AIDS has increased insurers' awareness of the need for custodial care, and encouraged policy makers to realize that custodial care really isn't a bad word, that it is an important need that people who are chronically ill and debilitated have. So my personal bias is that all that arguing and all that lobbying and all those presentations that I and many others gave over the

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course of many years on home care really did make a difference. And I have a very strong belief that they did.

There are people who would say, "We always knew this stuff." The Ryan White AIDS Care Act is a perfect example of advocacy around the disease that is focused on the community. It is meant to keep people out of the hospital, and it was designed on the San Francisco model.

So I feel like we did make a huge difference in what is ultimately accessible and will continue to be accessible, as insurers change what they think is necessary and look at lowering costs. They realize that custodial care is a lot cheaper than a nurse. We don't have to pay somebody $100; we can pay somebody $30. I did a lot of speaking to insurance companies, at their national meetings, and said, "This insurance coverage for home care is really what is needed." They were also educated about AIDS, a disease they had little knowledge of.

I really think we made a difference; it was worth it, and continues to be worth it. It's not over; it's just in different people's hands. I'm not quite as involved any more.

Hughes

Well, anything else you want to say?

Martin

I don't think so.

Hughes

Thank you for your time.

Transcribed by Shannon Page

Final Typed by Julia Rechter

Interview History

by Sally Smith Hughes

Appropriately, Helen Schietinger is the subject of an oral history in the first volume in this series on AIDS nursing in the early years of the San Francisco epidemic. It is appropriate because she was the first nurse to work at the first clinic set up expressly to care for patients with Kaposi's sarcoma, a rare form of cancer which for unknown reasons was appearing in young gay men. When she assumed the position at UCSF in January 1982, the epidemic had only recently acquired a name destined to endure--acquired immunodeficiency disease or AIDS. Thus Schietinger could justly claim to be the first nurse appointed to an official AIDS position in the Bay Area and perhaps in the nation. The name of the clinic, the Kaposi's Sarcoma [KS] Clinic, reflects an early view of the San Francisco epidemic in which KS was perceived as its most visible manifestation.

Marcus Conant, a UCSF dermatologist with a private dermatology practice, established the clinic at UCSF in the summer of 1981 and immediately set about to hire a clinical nurse to "coordinate and implement an involved protocol of laboratory studies..." The studies were aimed at unravelling the etiology and progression of the syndrome of cancers and opportunistic infections which in San Francisco were initially seen almost exclusively in gay men. Conant also specified a preference for "an individual who is knowledgeable about gay life style in San Francisco and the Bay Area" and "comfortable working with homosexual male patients."

Conant's requirements reflect an early perception of AIDS as a gay disease and also the stigma attached to homosexuality, even in the relatively open city of San Francisco. Schietinger, with ten years of nursing experience in hospital and community settings, a degree in counseling, and her personal warmth and empathy, was a perfect fit for the position. Furthermore, her status as a lesbian made her particularly sensitive to the physical and emotional problems of young gay men afflicted with the new syndrome.

Schietinger provides an insider's view of the operations of, and her responsibilities in, the KS Clinic, which was the only medical facility in the Bay Area dedicated exclusively to serving people with AIDS until the opening of the AIDS Clinic at San Francisco General Hospital in January 1983. She tells of the medical, scientific, and social services which she and other AIDS "pioneers" set up in these earliest years of the epidemic before HIV had been identified. The handout which she produced in March 1983 for use by gay patients in the KS Clinic at UCSF and the AIDS Clinic at SFGH may be found in the appendix. Schietinger's history of a clinic which was virtually eclipsed in the mid-1980s by AIDS activities at SFGH is interesting to compare with that of Conant's, whose oral history is in the AIDS Physician series.

The Oral History Process

We met in Schietinger's hotel room in San Francisco for two late-evening interview sessions on January 30 and February 2, 1995. Schietinger had come from her home in Washington, D.C. to be an organizer and moderator of the 7th National AIDS Update Conference running concurrently in San Francisco. Because of the cramped room, she sat on the bed, and I sat nearby, both of us occasionally referring to the documents on the KS Clinic which she had kindly brought from her home files. Schietinger took very seriously the task of setting down the history of the clinic, in part because none of its patients survive. She recommended that I interview Michael Helquist, whose partner was an early clinic patient, to obtain a layperson's perspective on what it was like to attend this clinic.

There was much more that Schietinger could have said about her work in the epidemic, which continues to this day. Because of the brevity of her visit and this project's focus on the first three years of the epidemic, discussion was limited to subjects associated with the KS Clinic. The reader is urged to review Schietinger's curriculum vitae in the appendix which suggests her many contributions to AIDS-related issues. The edited transcripts were mailed to Schietinger, who edited them lightly and returned them with further background documents.

Both Schietinger and Helquist mention in their oral histories that patients called her "Dracula" because of the large amount of blood she drew from clinic patients for research studies. In actual fact, she was loved and respected for her role as care giver and patient advocate and for her concern to ensure patients' physical, psychological, and emotional welfare. The reader will find evidence of these traits on page upon page of her oral history.

The Regional Oral History Office was established in 1954 to augment through tape-recorded memoirs the Library's materials on the history of California and the West. Copies of all interviews are available for research use in The Bancroft Library and in the UCLA Department of Special Collections. The office is under the direction of Willa K. Baum, Division Head, and the administrative direction of Charles B. Faulhaber, James D. Hart Director of The Bancroft Library, University of California, Berkeley.

July 1998

Regional Oral History Office
The Bancroft Library
University of California, Berkeley

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I Education

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Schietinger

When I finished high school, I decided I needed to get out of the South, go back up north, and find a place where people weren't prejudiced. So I went to Oberlin College, because I thought that was where I'd find good people, which I did, but I also discovered that people are prejudiced everywhere.

I graduated from Oberlin with a bachelor's degree in anthropology in 1970, and then was actually very involved in the anti-war movement. But I also went back to school to get my associate degree in nursing [1973] in Atlanta at Dekalb College, because I found that my bachelor's degree in anthropology would only get me a job as a secretary out there in the real world. So I became a nurse.

After almost ten years of doing nursing, I realized that I wanted to be working with people in a more intensive way than I had been working with them, and that the emotional and family issues that were associated with chronic illness were not being addressed in the work that I was being paid to do as a nurse.

So I went back to school, to graduate school [at Sonoma State University, California], to get my master's in counseling, to get more skills to work with people. I really expected to continue nursing, with a master's in counseling, to work with families who were coping with a person who was chronically ill or had a catastrophic illness.

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II the Kaposi's Sarcoma Clinic, UCSF

Nurse-Coordinator, Kaposi's Sarcoma Clinic, UCSF

Application and Hiring

Schietinger

I graduated from Sonoma State University in Sonoma County in 1981, and at that point, was looking for a job in which I could combine my nursing and counseling skills. I felt one of the places I could do that would be at UCSF, that maybe they had some research projects in which they needed nurses to interview people.

So I made contact with a friend of a friend who worked at UC in the nursing department. I called Angie Lewis

and asked her if she knew of any research jobs that needed interviewers. She said she didn't know of any, but there was an opening for a nurse-coordinator for a new clinic that was being developed for gay men that had cancer.

This was probably the fall of '81. I hadn't heard anything about this new disease, so that was the first I had heard of it. But it sounded very intriguing, and the fact that I'm gay made it doubly intriguing. I thought, if gay men were getting cancer, there would be a lot of issues that they'd have to deal with about their sexuality and their sexual orientation that would benefit from a sensitive ear.

So I applied for the job. Before I was interviewed for the job, I went to one of the KS study groups that was being held at UCSF. I remember distinctly walking away from that meeting of epidemiologists and physicians and public health people, being absolutely fascinated. And then I was a little horrified at myself at being so fascinated at this devastating medical puzzle. It was a combination of

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feelings of being fascinated and excited on one hand, and horrified and terrified on the other. Yet especially after I was hired and I began to work with the people who were coming to the clinic I saw how terrifying it was to the people who were actually coming down with the illness. The unknowns made it terrifying, as opposed to how fascinating it was to the researchers. But that's how I got to be involved in the KS Clinic.

Hughes

You began, officially anyway, in January 1982.

Schietinger

Right.

Hughes

And you say you had had some associations before that.

The American Cancer Society Grant, December 1981

Schietinger

Yes. It was probably in November [1981] when I attended that KS Study Group. I was disappointed that I was going to have to wait until January to start work.

Hughes

Was that a question of money?

Schietinger

No. I was working as a home care nurse--

Hughes

I meant in terms of the clinic, because I know Marcus Conant was trying to find money, and the American Cancer Society, of course, came through.

Schietinger

Right.

Hughes

But the money didn't actually arrive until December 1981.

Schietinger

Actually, that may have been it. It may have been an issue.

Hughes

It was a very quick turnaround between the grant application and receipt of funding.

Schietinger

Absolutely.

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Hughes

It was John Ziegler who had the connections with [Frank J.] Rauscher, who was senior vice president for research of the American Cancer Society. It seems to me he didn't even write a letter until fall.

Schietinger

Good heavens. I didn't realize that.

Hughes

To have funding come through within just a few months was amazing.

Schietinger

Absolutely amazing, yes. And the fact that they could actually create this clinic that quickly was also pretty amazing. When I came, they were already seeing patients.

It was totally chaotic because there was no one coordinating the clinic, but the physicians were actually seeing patients.

Identifying Kaposi's Sarcoma Patients

Schietinger

The attempt to identify patients who had this new disease was going on on a citywide basis. The physicians had compiled a list of patients who were hospitalized with any of a number of opportunistic infections or with Kaposi's sarcoma. When I was interviewed for the job, I know there was a list being made, but I don't know how many people were actually coming to the KS Clinic.

Hughes

I guess it was KSOI [Kaposi's sarcoma and opportunistic infections] at that point, wasn't it? Was it the work of the CDC [Centers for Disease control] to get the word out so that physicians had some standard by which to identify patients?

Schietinger

There was no standard--well, maybe they had developed a standard. Certainly they were identifying gay men who had been hospitalized with life-threatening illnesses, men who

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had an unusual opportunistic infection. Kaposi's sarcoma was not diagnosed immediately in most people. The lesions had to be biopsied. Richard Sagebiel [UCSF pathologist] was the only person with the expertise to read the pathology slides to identify the KS. The lesions themselves in early stages of development for the most part did not look pathological.

It wasn't until the word got out and gay men were saying, "If you have a spot, you better go see your doctor." Then the community doctor would say, "Well, this looks like it might be something suspicious. You better go to the KS Clinic where they can do a biopsy." So early on, KS was not usually recognized in the early stage of disease. Most people got very sick with Kaposi's sarcoma before they were actually diagnosed with it.

Hughes

That, I believe, is true, because it's now known that the people that you were seeing in the clinic had full-blown AIDS.

Schietinger

Yes, exactly.

Hughes

How else could it have been recognized before the antibody test?

Schietinger

Yes.

Educating Physicians about Kaposi's Sarcoma

Hughes

Do you remember how the word got out to community physicians about how to recognize AIDS? Both PCP [Pneumocystis carinii pneumonia] and KS were not conditions that most physicians were familiar with.

Schietinger

Exactly. And they would have treated people for other things, unsuccessfully, before they got to the point of even being suspicious that this person might have something unusual. There were a number of physicians who had large gay practices who attended the KS Study Group. I have a feeling that the initial physicians (eg, Marcus Conant, Paul Volberding) actually had contacted the physicians--gay physicians in particular--who saw gay patients, and then had briefed them and given them clinical rounds to show them what kind of lesions to look for.

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Relationships with Community Physicians

Schietinger

A lot of the primary care physicians in the gay community referred people to the KS Clinic.

They're the ones who, I think, felt somewhat betrayed when the KS Clinic didn't establish relationships with them and report back to them about what was going on with their patients. It took awhile for the clinic to be organized enough to send letters back and say, "Thank you very much for referring your patient," those professional courtesies that are actually supposed to happen.

Hughes

That responsibility landed on your desk when you became the clinic coordinator?

Schietinger

No. Marc Conant actually sent letters from his own office. I was the one who recognized the need for coordination of care. I would call the primary care physician about some issue that was going on with the person, and then they would grumble about not having heard anything about what was going on. So how would they know what to do with this patient, because they didn't know what was going on.

Hughes

So there was a lot of educating that had to be done one way or another?

Schietinger

Yes.

Hughes

Was that one of your functions, too?

Schietinger

No. Marc continued to provide clinical rounds by having patients come to the KS Study Group, to show the patients as examples for the physicians that came to that meeting. But there was this difficulty with communication between community physicians and the KS Clinic that didn't get resolved, I don't think, until after I left.

Hughes

Do I read into this that there was some tension between the community and university physicians?

Schietinger

Absolutely. There was tension.

Hughes

I assume that a community physician would refer a patient to the clinic where he would be set up for a treatment program

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under the aegis of the community physician. Right? The patient was supposed to return to the original physician?

Schietinger

Right. Theoretically, that's the way it should happen. But people were receiving treatment through the dermatology clinic at UC, in which the KS Clinic was housed, and they were being treated for skin infections or whatever right there in the clinic. There was a whole array of physicians at the KS Clinic: there was a primary care physician, an internist, and there were oncologists. There was Paul [Volberding] and there was Don [Abrams] and there were dermatologists, and residents in the clinic, all of whom were treating the patient. The patient had a medical record and a UC chart.

The problem was that patients weren't being sent back to their regular community physician with recommendations for ongoing treatment; they were just being seen at the KS Clinic. The KS Clinic physicians were saying, "Come back in two weeks so we can see you." The follow-up happened in the KS Clinic. So patients had the sense that, The experts are here at UC, so this is where I will stay.

Evaluating and Studying Patients

Schietinger

Then there was a whole staging process for the patients.

The staging process really was a complete clinical history of the patient. They were collecting as much data as they could on everybody who came through the clinic. A medical history and physical were completed, and then a lot of lab work, and a lot of extra lab work--whatever might give them some hints about what was going on regarding KS and in the patient's immune system.

Hughes

Did the sort of data that you were supposed to be collecting keep changing?

Schietinger

No, it seemed as though it kept being added to. The type of lab work that was being collected was fairly systematic. For a few months, we were obtaining lymph node biopsies on anyone who had lymph nodes that were of a certain size.

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There were decisions after a certain point to stop doing things that seemed not useful. There was a continual review. I know that there was a review of what was useful to the physicians.

But all of this [laboratory work] was being billed as medically necessary. There was no research grant covering the costs of tests, although the physicians who worked in the clinic donated their time, and some of the labs which wanted specimens conducted the tests free.

I know that there was always an issue with the T-cell tests. They were very expensive, and the lab could not continue to do free tests. It was very difficult, I think, to justify the T-cell test. The lab was having a hard time covering the cost of doing the T-cell ratio. It wasn't being billed in many instances, and many of the insurance companies wouldn't accept it. So there was always the issue of payment, before there was research money available to do the research.

Laboratory Tests

Hughes

Was it Art Ammann's group, or Art Ammann himself, who was doing the T-cell studies?

Schietinger

The studies were being done in the lab itself.

Hughes

The immunology lab?

Schietinger

Yes. Ammann was in pediatric immunology, but it seems to me that Conrad Casavant was more involved with the T-cell tests themselves. And that lab was collecting data. They were keeping in a separate place the names of everybody that was being tested. As time went by, they also periodically provided T-cell testing for health care providers who had been stuck with a hypodermic needle, or health care providers who were simply working with AIDS patients. So

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most of the people associated with the KS Clinic did have their T cells studied. I know I did.

The attempt to find ways of doing this research in the early days when there was no research funding and when nobody knew what was appropriate was very important, and it was very difficult. I can remember going over to the immunology lab and trying to talk them into doing a few more T-cell tests on some new patients.

The Patient Intake Interview

Hughes

You, I understand, did the intake interview.

Schietinger

Yes, right.

Hughes

With every patient that presented at the clinic?

Schietinger

Yes.

Hughes

Could you tell me what it consisted of?

Schietinger

I initially did a psychosocial assessment. I wanted to find out how the person was coping, what his social support network was, what his response was, what his needs for information were, and what his needs for support were. Then I also did as much teaching as I could, to let them know what was known at that particular time about this illness, and what would happen to them when they went through the KS Clinic, so that they could anticipate opportunities to ask questions, but also so that they would understand what was going to happen to them.

I did as much teaching as I could about nutrition and, if they were sick, what sorts of things they could do to make themselves feel better on their own, in terms of resting and taking plenty of fluids and all the basic advice you give someone who has the flu. But if someone knows that it's not the flu and that it's something new and scary, it's important to have someone validate that these are the things you can do for yourself, even though they're fairly straightforward. You take aspirin for fevers and chills,

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and if you need to sleep, you sleep, and you take lots of fluids, and that sort of thing.

Patient Anxiety

Hughes

By the time a patient had gotten as far as the KS Clinic, he knew it was serious, didn't he?

Schietinger

Right.

Hughes

So did most patients come in frightened?

Schietinger

They came in very frightened. As time went by, people came in having noticed a lesion, but with no other symptoms of AIDS. So as we saw more people with early Kaposi's sarcoma, there was the anxiety that's attached to "something might be wrong." With later stage disease, people felt a sense of relief that somebody might be able to tell them what's been going on for the past few months that they haven't understood. With early KS, people felt terrified that this harmless-appearing spot might be KS, which meant a deadly disease.

So both of those kinds of reactions were happening, but the newly diagnosed person with KS but without other symptoms of AIDS was much more common as time went by. Those people were the ones that had the most anxiety at having a biopsy and having to wait two weeks for an answer. Then I would get phone calls in between visits to find out whether the biopsy results were back. Could they come in this week?--no. And I would call the lab and find out if they had done this particular biopsy, and call the individual back and say, "Well, we don't have an answer, so you'll have to wait another week." That interim waiting time, I think, was the most anxiety-laden for people.

One of the things that was also happening was these all were gay men who were coming into a medical setting in which they were going to be asked a lot of questions about their sexual habits. I tried to prepare them for that a little bit. I tried to normalize the situation by encouraging them to bring their lover, if they had a lover, or to bring a friend, to try and feel somewhat comfortable in this medical setting.

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Confidentiality Issues

Schietinger

I actually was not comfortable with the fact that an extensive sexual history was being taken and put into people's medical records. I suggested that we keep separate records. Those questions were not in my mind medically necessary for the benefit of this patient and should not be in their medical file, which I know full well is very available to many of the people who work in the university system.

Hughes

Were you thinking of possible repercussions, or were you thinking invasion of personal privacy?

Schietinger

Invasion of privacy. I was more concerned with the integrity of this individual, who was already having his privacy invaded to a tremendous extent. The staff was suddenly aware that these people--these people, just the very terminology, "these" people, these new people that had AIDS--were possibly contagious. The infectious issue was very frightening to people, and one of the early things that I had to do a lot of was talking to staff, and going through what we knew about this new disease regarding transmissibility.

The other thing was that people who had not known about gay men's sexual habits were suddenly learning about very esoteric sexual behaviors that never would have occurred to them before. In the early days, in 1982, the CDC had done their case-control study in New York City, where they had interviewed extensively fifty people with AIDS and 120 controls, and had identified fist-fucking as one of the potential risk factors.

Even the term fist-fucking was new. It was something that was suddenly being talked about in straight medical settings, but most of us had never heard of fist-fucking.

---

My assumption that there would be a lot of generalized negative response to all gay men, based on this new information that people were learning, made me particularly sensitive to the possibility of people flipping through other people's files. The sexual history was supposed to be taken in code. There were certain terms that they used codes for in the medical histories. Marc justified this being a part of the routine medical procedure in the dermatology clinic because most private information was in code, and that people wouldn't know what it meant if they read it.

Hughes

Why did he think it was necessary to have it in the record?

Schietinger

He thought it was important to get as much information as possible, because maybe in an aggregate form, these data would tell us something. These attempts to gather as much information as possible made me uncomfortable about the way that the research was being done at the KS Clinic. The reason that I went to the human subjects committee [UCSF Committee on Human Research] and began the process of developing an informed consent and a research protocol that would be official was to make sure that people were actually aware that this was research, which it was. But it was informal research in the very beginnings of the epidemic, and the physicians just were more concerned with getting the data gathered than being stymied by the slowness of the human subjects committee. I'm sure that their relationship to the IRB [Institutional Review Board] had to do with that.

Patients as Research Subjects

Hughes

When it became clearer to people that some of the procedures were strictly for research purposes rather than for diagnosis or treatment, did they hesitate to comply?

##

Schietinger

When people were given the opportunity to say no to a biopsy, for example, on the basis that it was not going to provide information that would be useful for their medical situation, they always said, "Do it anyway. I want to help. If there's anything I can do that will be useful in finding out something about this disease, I want to do it." Over and over again, I as the patient advocate being protective of the patients, either in the context of research or in the

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context of media coverage, found that although ethically it's very important for people to give that consent, in this epidemic, people always gave consent. They were always willing to provide information that was requested.

Hughes

Do you have an explanation for their willingness?

Schietinger

Well, I think it had to do with altruism. It was always in the context of, "If I can help someone else, if I can find meaning in this disease, make it meaningful by having my experience be useful to someone else, then I want that to happen." That was particularly true in terms of providing information; that was something that was important to people.

Hughes

I'm not trying to take away the altruism by making this suggestion, but perhaps when somebody is going through a gruesome experience, it would help a bit to think, Well, maybe this will help somebody else.

Schietinger

I think that's probably true. Absolutely. Oh, yes, and I think that giving the disease meaning, or giving the whole experience meaning, by being able to contribute also is certainly self-serving. Because the despair of having your life cut off is a pretty gruesome thing to have to deal with.

Hughes

I would think that there would be a certain comfort involved in coming to a clinic where at least there was a procedure and a ritual and concerned people.

Schietinger

Exactly, that's very true. And a place where people have seen this condition before.

Hughes

Yes, knowing you're not the only one who has it.

Schietinger

Yes.

There's another aspect that I think early on became very important. There are times when people with any disease need connection with someone who has the same disease. When people came to the KS Clinic was usually not when they wanted to talk to other KS patients. But they did very much want to have that connection at some point, even in the early parts of the epidemic when we didn't have a name for the syndrome and no one really knew what was happening; they just knew people were dying. They wanted to know from us at the clinic, "Do I have this?"

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Bobbi Campbell: Patient Activist

Schietinger

An important thing that happened at the clinic was that one of the early patients, Bobbi Campbell, was one of the first AIDS activists. He wanted to make himself available to other patients so that they could meet someone who was still actively working and had been diagnosed with Kaposi's sarcoma, and clearly had this disease, but who was well. He felt very compelled to help by making himself available.

Bobbi was also an educator. Bobbi got copies of the slides that Marc had taken of the lesions on his feet. I gave him the slides so that he could get photographs made of them. Then he made posters out of them and put them up in the window of the pharmacy down in the Castro District, so that other men could see that and, if they saw that these lesions looked familiar and they had some like it, that they could come into the clinic and get them dealt with.

So the need for having the disease normalized in some way, I think, is really relevant.

Hughes

Was there such a thing as an average patient in those early days, in terms of the sorts of symptoms and opportunistic infections that were being seen?

Schietinger

Good grief. That's an interesting question. My first impulse is yes, but then I can think of all the exceptions. I think of all the people who were far from average. But the clinic itself really was seeing a lot of people with early Kaposi's sarcoma.

Patients with Opportunistic Infections

Schietinger

I think that the word had been put out, and the people who were coming in with opportunistic infections were so sick that they had to be hospitalized and were being treated in various hospitals around the city by their primary physicians. I think probably there was much consulting going on over the telephone with Paul and with Marc, that those people were being included in the network that Selma Dritz (at the San Francisco Health Department) was collecting information about, but clinically they were being treating by infectious disease docs.

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There probably was something else happening that I wasn't even aware of. I'm sure that the infectious disease docs at UC had a whole network of referral systems and consultations that they were doing somewhere else besides the KS Clinic.

Marcus Conant's Role

Hughes

Interesting that there was never a PCP clinic.

Schietinger

Right, that's true.

Hughes

Why was it? Is it the fact that it happened to be Marcus Conant, a dermatologist, who heard of the first KS case in the city, and--

Schietinger

I think he would have established a KS clinic whether he had heard of the first case or not. I think Marc Conant was really the one that had the most concern, that saw that something needed to be pulled together, that people needed to be looking at things systematically.

What I find interesting is that the whole epidemiological thing gravitated around the KS Study Group, as opposed to being at the health department. That Selma Dritz came to the KS Clinic. This was the place where the experts who were concerned about this disease did their brainstorming. And it was Marc's announcements about the next KS Study Group or whatever, his collection of names for the mailing list, that was the catalyst for something to happen in San Francisco. I think it was Marc, and his concern, and his dynamism, that made it happen.

Hughes

And what about his connections with the gay community? Was that a factor, too, in the early success of this venture?

Schietinger

Possibly. Certainly his connections with the gay physicians. I know that one of the people whom he worked with very closely in terms of founding the KS-AIDS Foundation

was Bob Ross, the editor of the Bay Area

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― 107 ―

Reporter. Bob Ross was on the board, and he was one of the important people in the gay business community. I'm sure that Marc made those connections within the gay community that were very useful in the beginnings of the epidemic.

Hughes

Was your perception of Dr. Conant that he was functioning as a physician who happened to be gay? It seems to me that if it were reversed, if he were a gay man who happened to be practicing medicine, then issues such as consent and invasion of privacy and those sorts of things would have been foremost in his mind.

Schietinger

Yes, I think that's true.

Hughes

He was functioning as a physician.

Schietinger

Yes, very definitely.

Hughes

So the group needed people like you who were concerned about such issues?

Schietinger

They probably didn't think so, but I did. [laughter]

Hughes

All right. The patients, the people with AIDS, needed people like you.

Schietinger

Yes.

Hughes

I think when you're engaged in a medical emergency, you do what you're trained to do.

Schietinger

Exactly. Being expedient and getting the information as quickly as possible was primary to the physicians. And that had to do with saving lives as much as with how interesting research was. Certainly the concern with figuring out what was going on so that they could do something was really important.

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Theories about Etiology

Hughes

When you came on as nurse-coordinator in January, 1982, can you remember what the prevalent theories were about the cause of this disease?

Schietinger

I seem to remember that essentially in the medical community it was already accepted that it was a sexually transmissible disease, that there was no theorizing about that anymore.

Hughes

So poppers had dropped out of the discussion?

Schietinger

Well, there was still a question as to whether there were cofactors, that poppers might be a cofactor that was the catalyst to make someone have a particular opportunistic infection or that reduced the immune system enough so that whatever was contagious, stuck. There was a great deal of interest, especially among the epidemiologists, about particular behaviors that would be cofactors. Fist-fucking and anal intercourse and water sports and all of the things that could have been various means of transmission were being looked at pretty seriously.

But I think most people assumed that it was a sexually transmissible disease. I remember being very comfortable with the hepatitis B analogy, and that we needed to not be exposing ourselves to blood and to body fluids, but that it was pretty obvious that, whatever this was, it wasn't transmissible through the air. This was something that I worked very hard to convey to other health providers, using the epidemiology as an argument for why it was sexually transmitted, and that other people around gay men were not getting this disease from them.

Hughes

Was that something that you had figured out on your own, by observation?

Schietinger

No. I think this was a rationale that was already being used by--I want to say the epidemiologists--so it may have been coming from the CDC. The CDC had already been in New York finding injecting drug users and gay men with the disease, seeing that it was in these two groups of people, and knowing that what they had in common was blood transmission and sexual transmission, and it looked very much like hepatitis B to them. So I think that was given to me; it had already been established when I arrived.

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One of the things I always go back to is the importance of the CDC having identified injecting drug users with the disease early on. It was identified as a new disease among gay men in the early publications, but in fact it was known, certainly by the fall of '81, that it was not just a disease of gay men. So the identification of this disease as something that was happening in gay men and therefore it had to do with their sexual behaviors was not realistic. It was specious.

Hughes

Yet it continued to be perceived of as a gay disease.

Schietinger

Exactly. That was one of my biggest struggles. That was one of the reasons that the talk that I gave at the National Lesbian/Gay Health Conference in Houston in the summer of 1982 was written the way it is. I needed to make it very clear as a health provider as well as as a lesbian, as a member of the gay community, I felt threatened by people's potentially negative reactions to the gay community in general. It was very important to me to make it clear that AIDS was not a gay disease. But I was just talking to various groups of people, and was not the one who was publishing the articles.

There was a minor theory that the buildup of various assaults on the immune system might have caused this syndrome. Actually, there were even some people in the medical community, come to think of it, who still weren't convinced it was contagious, that it actually was a--

Hughes

Immune overload.

Schietinger

Immune overload--that was the theory. I had forgotten about that, but there were those who felt that that was what it was. But I can remember assuming that it was infectious from the very beginning, and that it was new, and therefore probably a new disease syndrome.

Hughes

Originally there was only one risk group, namely homosexual men.

Schietinger

But the CDC had identified injecting drug users from very early in the epidemic.

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Risk Groups

Hughes

As time went on, it became obvious that other groups were becoming infected. It became the famous four H's for a while.

Schietinger

Exactly.

Hughes

Was that something you were comfortable with?

Schietinger

Well, it was. I didn't think of the political ramifications of Haitians being identified as a risk group. I was one of the people who, in giving my talks, listed the four risk groups. But I also was very happy to begin the shift of focus to risk behaviors, and to identify that there are many homosexual men who do not engage in the behaviors that would expose them to this disease. That became a relief to me in my attempt to separate out the issues, and to enable the gay men's community to deal with sexual transmission as the issue related to AIDS, not sexual orientation.

Hughes

Are you saying that it wasn't clear in the beginning that the fact that you were gay didn't necessarily predispose you to this disease? Rather, it was what you did as a gay person? That that distinction wasn't initially made?

Schietinger

Yes. And in fact, initially there was no distinction between gay men and lesbians. In the mind of the public, all male and female homosexuals were at risk. They didn't necessarily think about the differences. Actually, the genetic predisposition issue was being looked at in the labs, too. They were doing HLA [human leukocyte antigen] typing on people. There were Haitians, who were a national group, coming down with the disease. Was there something about them that was genetically distinctive? I think that was muddy in people's minds, actually, and it was something that early on I felt needed to be clarified. It would be interesting to look in the GMHC [Gay Men's Health Crisis] booklet and see how they identify it in 1982, as they are coming out with the first literature on AIDS for the gay men's community.

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Hughes

Was there some event that switched people's thinking towards the idea that the disease was linked to behavior rather than the fact that you happened to be gay? Some of the epidemiological work, in which sexual practice was studied, could have led in that direction. For example, receptive anal intercourse.

Schietinger

But that was really only eventually. It was a long time down the road before there was really enough epidemiological evidence. The key event was the identification of the virus, I think. The fact that finally this virus was identified as the agent that was the underlying cause of the immune deficiency, even if there were a number of behavioral practices, or immune overload, or all those other theories that might have contributed to transmission of the virus, as well as to increased vulnerability of the immune system.

Before that, there was such a muddy confusion about what constituted safe sex. Later the term safer sex was applied, because nobody was willing to commit themselves to something being safe sex. But it was very muddy at the very beginning. I can't think of any event besides identification of the virus that helped make the shift from the danger being what you did rather than who you were. I remember the denial on the part of the blood banking people, that there should be something done about transfusions.

Hughes

Remember Art Ammann's baby?

Schietinger

Yes.

Hughes

In December, 1982, it was learned that one of the donors who had contributed blood used in the baby's multiple transfusions for Rh disease had come down with AIDS. It was one of the cases precipitating the problems with the blood bank people. Dr. Ammann believes that you really had to

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have your head in the sand after that if you didn't think that an infectious agent was involved.

Schietinger

Oh, absolutely.

Hughes

Do you remember that baby being a real source of discussion?

Schietinger

Yes. But the babies that I remember best were the babies of the injecting drug user, whose immune deficiency he identified, but originally found very difficult to attribute to this new disease. I don't know if he talked about that.

Hughes

Yes, he did. He tried to work out complex genetic explanations for their immune deficiency--anything but AIDS.

Schietinger

Right, exactly. That's what I remember.

You're probably right. My recollection is that very early it was pretty clear to the experts that I was hearing from that this was a transmissible disease and that it was not contagious by air--something like hepatitis B. Probably it had to do with that event. Somehow, that was easier than the injecting drug users in New York, with their messy behavior. It was a cleaner association.

Fear

Hughes

What was happening to levels of fear during the confused period where the etiology could be any number of things?

Schietinger

And nobody thinks about contagion.

I seem to remember not too much fear in the dermatology clinic among the regular staff in the early days. They weren't afraid of the patients. And the staff when I would visit an inpatient didn't seem to be too concerned. They really didn't know what this was. In 1982, the fear wasn't there so much. When there was an infectious agent identified, then people became very frightened.

---

Hughes

You mean when the virus was identified?

Schietinger

Yes, when the virus was identified.

Infection Control

Establishing Procedures

Schietinger

I collected blood from patients as part of my job, and one day I went over to San Francisco General to draw blood from a hospitalized patient. I knew I shouldn't sheath the needle after I had drawn blood. I knew that I had to get the syringe and the needle out to the medicine cart where the nurse was passing meds [medications] on the floor. But nobody else seemed to be concerned about how I was going to do that. There was no receptacle at the bedside, in other words.

So I walked out and disposed of my stuff and went back to my office and called the infection control nurse, whose name is Grace Lusby,

and told her my experience. I said that I was concerned, because there needed to be a way of making sure that nurses didn't have to re-sheath their needles. There was a place that you dropped the syringes on the medicine cart, but it wasn't a closed container, and there was something about it that was just very wrong and dangerous.

She said she had been fighting with the administration for months, trying to get them to invest in unbreakable receptacles that could be put at the bedside. She said that I embarrassed her into bringing up the issue again. She finally found a cheap solution.

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##

Schietinger

Until there were actually containers manufactured, red bottles for syringes, Grace arranged for nurses to use leftover Clorox bottles that they put at the bedside and labeled in very large letters. But in the early days, there was not enough fear, and then very quickly, there was too much fear. Both of those things were very problematic.

Hughes

What were you doing about infection control?

Schietinger

I was very sloppy.

Hughes

What was the protocol when you arrived at the clinic?

Schietinger

I don't believe there was one. I don't know. [Pause] People may have been wearing gloves to draw blood. I think people knew they didn't have to wear gloves to touch lesions or anything like that. There certainly was no overreaction in the clinic. Nobody was gowning and masking to go in and talk to patients. But in terms of gloves or needle re-sheathing, I don't think there was an official protocol at UC at that point.

I was not re-sheathing needles, but I was carrying around a needle box with me, a little box that you clip off the needle with. So I would draw blood, and then I would put the needle in the clipper and clip it, and then I would put the syringe into another container.

Hughes

Was that something that you on your own decided to do?

Schietinger

That was pretty standard procedure. I think that was something that was done all over the hospital. Everybody had needle-clipping things on their trays for venipuncture.

Hughes

Was that the hepatitis B heritage?

---

Schietinger

No, that was to break needles so that injecting drug users wouldn't steal them out of the garbage can.

Hughes

Nothing to do with infection--

Schietinger

Nothing to do with infection.

I think it must have been months after I was there, I noticed there was dry blood all over the top of my little container that you clipped the needles off with. There was this dry blood lying around. And here I was, teaching other nurses that they shouldn't touch blood, and they should wear gloves to do venipuncture, and I had drops of dry blood all over my venipuncture container, and--

Hughes

And what kind of an instructor were you!

Schietinger

Yes, really. [laughter] I think at that point, I realized how sloppy I was being. I was not being worried about things that I should have been noticing.

Patient Reactions

Hughes

Was any part of this casualness, if that's the right term--

Schietinger

Yes, it is.

Hughes

--due to a wish not to upset the patients? Many patients were probably pretty frightened when they came to the clinic. If they were confronted by staff gowned and gloved and obviously not wanting to touch them skin to skin, that wouldn't have made them feel less afraid.

Schietinger

That's very true.

Hughes

Were you concerned not to further frighten the patients?

Schietinger

[Pause] No, I don't think so. I don't think I had any problems putting gloves on to do the procedures that I felt I needed to use gloves for. Some nurses argue that they don't want to wear gloves because they feel that will make the patients feel like they are anathema. But I guess I was always making the point to touch people, and to establish that I accepted them and wasn't afraid of them, so I didn't have that problem.

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I did have the problem with the patients with Pneumocystis pneumonia on ventilators in ICU [intensive care unit]. They had people masking and gowning to go in and see them, in the early days at UC. I believe we were supposed to do that to go in and talk to patients. I think I did feel uncomfortable with that, because it was not reasonable to me. And at the VA hospital, they were doing that for years after it was appropriate. It just made me angry. It wasn't until I went in without a mask and a gown on and upset the patient, who had been told that they were for his own protection, [laughter] that I realized that I couldn't win. A protocol is a protocol, and if you don't follow it, then you're going to upset somebody.

Hughes

San Francisco General thinks of itself as being in the vanguard of infection control.

Schietinger

Absolutely. They are.

UCSF Task Force on AIDS

Hughes

In 1983, the UCSF Task Force on AIDS, headed by Merle Sande, issued the first detailed infection control guidelines for AIDS.

Do you remember much about that?

Schietinger

Well, I remember the task force, and I remember there was this group of people having all these meetings. But by the time they had made official protocols, the infection control nurses who were dealing with the areas of patient care had already established what was appropriate and were implementing it. So I want to make a separation between practice and policy on that level, because it was all fine for Merle Sande, as the official person, to christen the protocol, but he wasn't the one who initiated appropriate procedures. That task force had Grace Lusby on it and other people dealing with infection control who had been teaching the staff on a day-to-day basis from 1981.

Grace had already dealt with all that stuff by the time they actually came up with their protocol. She actually had

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already dealt with it by the time I called her and said, "What's happening here?" It's just that the response of the hospital administration had been lax, so the appropriate materials weren't there for nurses to practice what they had already been taught.

Hughes

So [Sande's] infection control committee formalized what already was being practiced?

Schietinger

Yes.

Support from UCSF

Hughes

Please describe your relationship with the university administration.

Schietinger

Well, I felt very cut off from the university. My relationship with the university was not a friendly one, I think. I was on staff; I was an employee of the university, but I also was on a short-term contract, because I was funded by this six-month grant. My position got extended, but it was always funded by soft money, so I was always considered peripheral.

The critical issue was that the KS Clinic was not a regular clinic of the university. For example, I approached my administrator, saying that there was a need for a social worker, that people coming to the KS Clinic needed to have assistance with applying for various benefits; they needed to have some help from a social worker. I was told that we couldn't have a social worker, that the KS Clinic was not making money for the university; it was not an official clinic. They told me that if they had their way, if I was actually a clinic staff person, then I would be assigned to be in charge of a number of clinics. I would never have the luxury of having just the small patient load that I was in charge of.

So I didn't feel supported by the university, and I didn't feel that the patients who came to the clinic were

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supported by the university. It was a very different-looking clinic than what eventually evolved at San Francisco General, the AIDS Clinic. The difference was that there was extra funding from the city at San Francisco General to provide the additional staff to meet the complex needs of the patients.

Social Services

Hughes

As you explained to me off-tape, if you look at patient care as a spectrum, what the KS Clinic was able to do was only a very small part of that spectrum, which when the AIDS Clinic at San Francisco General was up and running, it could encompass to a greater degree.

Schietinger

Exactly.

Hughes

Funding was the bottom line?

Schietinger

It was. It was funding. And it was also the access to volunteers. But I think primarily it was the funding that enabled there to be additional staff, and the funding that was provided to the Shanti Project, so the Shanti Project could train and supervise volunteers that were then available to the AIDS Clinic. That was part of the evolution of services that didn't exist, of course, in the very beginning.

Hughes

Yes, but the perception of the need for social services seems to have come very early.

Schietinger

Absolutely.

Hughes

And that was because of what patients themselves were saying in the course of the intake history? You became aware of insurance problems, home care problems, that sort of thing.

Schietinger

Right.

Hughes

It became obvious that this syndrome wasn't just a hospital problem? It wasn't something you could give a few tablets for and send somebody off, and everything else would be all right.

Schietinger

Right, exactly. It was very difficult to function in the context of the KS Clinic in the ways that the patients came

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to expect, because there was nothing else at that time, and because they perceived this as being the place where the experts were that knew how to take care of them. They didn't want to go back to their primary care physician who had sent them there because he or she didn't know what was going on.

The Clinic's Limitations

Schietinger

But in fact, the clinic happened once a week. It was really only set up to deal with a certain number of people at a time for certain reasons: to stage them, and to follow them prospectively as they were either receiving treatment elsewhere or being followed by an infectious disease doc or other specialist. But it was not established to provide their basic medical care, much less meet their emotional needs and that sort of thing.

Hughes

Did patients come hoping that those needs would be taken care of?

Schietinger

Yes. They came with lots of questions, and I spent a lot of time with them when people would come to the clinic. At first, on Thursday mornings, I found myself sitting in the hall, working with people who had come. Then I actually began having people come in at another time of the week to do intakes, because it was impossible to do what needed to be done on the morning of the clinic. So I got people to come in prior to their clinic appointment, and I began filling out intake sheets on them and doing the history. That was in reaction to how impossible it was to do everything that needed to be done at the clinic time.

It finally got to the point where people were actually being seen by two or three different physicians on the morning of the clinic, and so my access to them was limited, because the physicians were each examining them for various things. I had people come in to my office during the week, so that I could meet with them and deal with their issues. Even then I was not able to help them with the filling out of forms, such as applying for Medicaid, which a lot of people did have to do.

Hughes

Because you didn't have the time?

---

Schietinger

I didn't have the expertise; I didn't know what to do. I just didn't know about these things.

The AIDS Clinic at San Francisco General Hospital

Schietinger

It was such a relief when the AIDS Clinic at San Francisco General got established, and there was a social worker there who made sure that people had access to the Medicaid eligibility worker. These were services that were there at San Francisco General that didn't exist at UCSF, or maybe did, but we just didn't have access to them.

Hughes

So it was a relief to have services available at San Francisco General?

Schietinger

It really wasn't a relief at first, because I felt betrayed. I felt as if this group was going over there to form this other clinic that was--not in competition with us--but was just taking patients away. Paul was going over there and setting up a new clinic, and he was going to continue to come to the KS Clinic, but this whole new thing was happening over there. My first reaction was a feeling of betrayal, that this shouldn't be happening. It wasn't until I saw what was being developed over there, and I realized that the city was actually making funding available for excellent staff, that it was real clear that that was a terrific advantage.

Hughes

Did it occur to you that this could have happened at UCSF?

Schietinger

Oh, yes.

Hughes

UCSF was where it started--

Schietinger

And this was where I felt it should stay. I wasn't involved in whatever discussions and strategy sessions happened to make Paul make that move.

Hughes

Was it a discussion point with Marc Conant?

Schietinger

I really don't know. If it was, I wasn't aware of it. My guess is that he refused to leave UCSF, that he wouldn't go over to this new clinic. My guess is that he was establish-

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ed at UCSF; that was where his office was, and the clinic that he had set up. I don't know what happened in all of that. I just know that it felt really sad at the time.

UCSF and Homosexuality

Schietinger

There was an attempt at a later time to set up at UCSF an AIDS clinic--excuse me, it was not an AIDS clinic, it was the Adult Immunodeficiency Clinic.

Hughes

Quite deliberately so named to avoid the term AIDS.

Schietinger

Absolutely. It was real clear what couldn't happen at UCSF, as history evolved. And I should have known at the time I couldn't expect it to be a supportive environment for the gay staff.

Hughes

What was behind that lack of support?

Schietinger

Well, I never was on the inside of UC, so I don't understand the workings of it. I think it's a homophobic institution, frankly. But that's a very superficial look at it. I know that it wasn't a safe place to be "out" for most of the gay staff there. Angie Lewis was very courageous in identifying herself as a lesbian and going to visit patients in 1981, to tell them that she was a lesbian so that they would know that there was somebody there who was gay. All the staff around them knew that these patients were gay. Most of the gay staff did not self-identify, I don't think, even to the patients.

Hughes

But you did.

Schietinger

I did, absolutely.

Hughes

It was an element of the job description for clinic nurse-coordinator.

Schietinger

I didn't realize that. [tape interruption]

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I made it clear in my interview that I was gay, and that I wanted them to know that I was a lesbian.

Hughes

[reads portion of job description] "Prefer an individual who is knowledgeable about gay life style in San Francisco and the Bay Area."

So it didn't necessarily mean that an applicant had to be lesbian or gay, but it certainly did not close the door.

Schietinger

Yes, exactly. That's good.

Hughes

I wonder who wrote the job description--it was probably Marc Conant.

Schietinger

I think so.

Hughes

"Supervisor, Dr. Marcus Conant," is at the top of the job description.

More on Conant's Role

Schietinger

One of the residents interviewed me and made the decision to hire me. Van Fletcher was the dermatologist who was in the clinic at that time. Marc was in charge of the whole process. He pretty much was the mover and the shaker of all this stuff that happened.

Hughes

How much was he actually in the clinic?

Schietinger

Well, the clinic only met on Thursdays. Every Thursday, he was there.

Hughes

There would be no reason for him to come between clinics, would there?

Schietinger

Right. Other than that, I went to his office to meet with him. So I saw him for a meeting and during the clinic, but pretty much, I worked on my own in the clinics administra-tion building. He saw patients or did the rest of what he was doing in his office.

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Hughes

Was that all right with you?

Schietinger

I would have preferred to be working with colleagues. I would have preferred to have more of a working relationship with him. But you got a sense of how busy he is in your interview with him.

And he's always been like that. So I appreciated the time that I did have with him, and knew that it wasn't possible to have more.

It was a very isolating experience, working in such a small clinic that only met once a week. The person that I saw periodically was Don Abrams, because the oncology clinic was on the same floor as my office. But for the most part, it would have been possible for me just to not be there, and nobody would have known.

Perhaps one of the reasons the clinics administration had such an unsupportive attitude toward the KS Clinic was because they had no control over it. In fact, so much of what I was doing wasn't generating income. The clinic visits of patients were charged to the patient's insurance or to Medi-Cal, but the specimens were going to unfunded labs that were doing all of the work free. There were no patient charges generated for any of the consultations I had with the patients, or the consultations of the physicians seeing patients in the clinic.

Educational Sessions for Patients

Schietinger

Clinics administration saw the work that I was doing to develop support systems for the people who were coming to the clinic as pretty peripheral and touchy-feely and unnecessary. In fact, there was never any record of the educational sessions that I set up for patients.

Hughes

Were the educational sessions scheduled for a certain time every week?

Schietinger

Yes, they were a regular time every week. I think I didn't start doing them until I had been there for about six months. That seemed to be the thing that people wanted the

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most. They wanted information; they wanted access to the physicians, to the experts; they wanted to come to the KS Study Group and hear what was really going on. And of course a theme all the way through the AIDS epidemic is the people living with HIV know more than physicians, because they keep up.

The educational sessions became a regular thing, and I expanded them to things that I thought would be useful to patients. I brought in a nutritionist to talk to them. I'd have to go through my papers and look for other topics.

Hughes

It would be interesting to know the range of subjects that you thought was worthwhile. Was scheduling a speaker a matter of hearing somehow that there was a nutritionist, for example, on the campus who might be persuaded to come and talk?

Schietinger

Yes. And having people who had come to the KS Study Group for various reasons who might have some interesting slant, or were doing some work that related, that the people who were coming to the clinic would be interested in.

Hughes

It's getting late. I think we should stop for now.

Psychosocial Services

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Paul Dague, Shelly Hatfield, and Helen Schietinger

Hughes

I think we should start tonight with Paul Dague, whose name came up at the end of the last session. Was he one of the first psychosocial people connected with the clinic?

Schietinger

Yes, he was. He actually came in as a colleague of Marc's on a volunteer basis.

He was a private psychologist in the city, I believe. I don't think he had any connections to UC. He might have also been doing work with Operation Concern, which is a lesbian and gay therapy center that I

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think had some public funding of some sort. But I think for the most part he was in private practice in the city.

He came in to be of support to the people in the clinic, to provide psychological services. So he and I began working collaboratively, and I talked to him about what had been going on before. I should flip through my 1983 calendar and see if I can identify when he came into the clinic.

Let me backtrack a bit, because there was a social worker at the ambulatory clinics services who made herself available to me as a consultant. Shelly Hatfield was a social worker who was able to work with me so that I had somebody to consult with. I don't think she was able to see any clients.

Hughes

Did you approach her for help?

Schietinger

She was interested in AIDS and came to the KS Study Group. I met her there and began talking to her about clients and asking her questions about resources in the city and resources within UC and that sort of thing. So we developed a relationship, and I continued to go to her office and talk to her about potential resources and things. She was very helpful, especially in providing me with emotional support. She recognized that I needed support to be doing this work. But the clinic itself, the Ambulatory Care Center at UC, did not officially make social services or social workers available at all.

Marc asked Paul to come in and consult with the individual patients who were being seen so that they would have some support. I guess he did an intake interview on each person as they came into the clinic. I think that's actually what we started doing: I would see them, and then they would see him if they wanted to.

Hughes

As I remember, you called your intake interview a psychosocial assessment.

Schietinger

Yes.

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Hughes

You determined what their state of mind was and what their social support system was, things like that.

Schietinger

Right.

Hughes

Wouldn't Paul have been doing something similar?

Schietinger

Well, yes. In a way, he was taking some of a load off of me. As the clinic expanded, there were more and more people coming in. What I was doing was a much broader scope. I was having to identify a lot of issues that each person had, what kind of resources they needed in terms of the psychosocial assessment, how stable they were, how they were coping. I was providing emotional support on an ongoing basis for people who were really anxious; they could call me during the day and have access to me.

Whereas I suppose seeing Paul was more like an actual therapy session, sitting down with somebody, talking about the immediate impact of this disease, and going much more in depth about his feelings. Whereas I was more doing crisis intervention, and then if someone was in crisis, trying to figure out where to go with that. But for the most part, I was assessing and then providing support, as opposed to doing therapy in a more in depth way. So he was extending the ability of somebody to deal with the illness right there in the clinic. And he continued to work with the clinic after I left.

Hughes

Always as a volunteer?

Schietinger

I believe so, yes. He was never paid, I don't think. Well, there were no funds. There was no way he could be paid.

Paul Dague's Illness and Death

Hughes

Paul Dague died of AIDS in 1984.

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Schietinger

Linda Maxey was his Shanti counselor and worked very closely with him when he was sick and dying. And that's a whole other period of his life, of course.

You know, I totally forgot this. He was seeing clients in the clinic and I was still there when he was diagnosed. I forgot that. I blocked it out. He came up to me one day and asked me to look at something behind his ear. It was a little bump, but it was definitely not a lymph node. He said, "Well, what is this?" I said, "Well, it looks like a little cyst to me. Ask Marc to look at it, but I don't think it's anything."

So I brushed it off, essentially. My response was to reassure him. He went to Marc, who did the same thing. But then Marc had him come into his office. He assumed it was a cyst, and was going to remove some fluid. But it turned out to be KS.

It was a very atypical lesion, so it wasn't just a matter of my being in denial and saying, "Oh, it couldn't be happening to Paul." But I'm sure that was there too. I don't think either one of us was able to look at the possibility that Paul Dague could have KS. He was one of the care givers. He was a gay man, which made him much more useful to the clients, because he could be there for them in a way that nobody else could. But I think being a care giver was supposed to make him invulnerable to AIDS. The possibility of a care giver getting AIDS was something that none of us had been willing to look at at this point.

Hughes

Was there an element of, if it happened to Paul, it could happen to me? Before that, was there a psychological separation between the staff and the patients?

Schietinger

The categories of care giver and patient were separate, certainly. I still thought that I was especially protected because I was a lesbian, and I was a very monogamous lesbian. I didn't have any sexual behaviors by which I could come in contact with the virus. A care giver could be exposed by sticking themselves with a needle or something, which certainly was a fear. But there was still a boundary between care taker and patient that wasn't supposed to be crossed, and it was not okay for the care giver to become a patient. It was very threatening.

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Hughes

How was it handled by the staff? Because Paul continued to work in the clinic after diagnosis.

Schietinger

Yes, he did. Primarily, staff saw him in a well category, and therefore didn't deal with it, I think. They just put off the possibility that he would get sick, because he was fine. So that then became the separation, as opposed to, "He doesn't have KS."

I had a more intense relationship with him because, as we worked together, I talked to him about the possibility of having him be my supervisor for hours toward my MFCC license as I was doing these intake interviews. We came to an agreement that he would supervise me an hour a week. It was so that I could accumulate hours for my MFCC license, my marriage, family, and child counseling license, for which I had to accumulate experience.

But it also was a very useful situation for me to have someone to consult with about the clients that I was seeing, and therefore be able to be more effective as I was talking to them. And also to deal with my own feelings, the difficulty of working--at this point not with young dying people, but with young people who were making their own decision about what they were going to do to deal with this new disease.

For me, one of the big issues was the people who were going off and doing alternative therapies. I was concerned that they were maybe decreasing their nutritional intake because they were going on fasts. I was very concerned about a couple of people in terms of the implications of their doing the things they were doing. They weren't just doing acupuncture or something that could be done parallel to medical treatments. There were a couple of people that were on special diets, and that was making them lose weight.

I consulted with Paul about some of those issues, and he was very helpful to me in my accepting the need for control that a person with a terminal illness has, and the importance of their doing things that I might think were inappropriate. In fact, it wasn't my place to tell them so, and it might be a very empowering and important thing for them to do. So he was very useful in my struggle to accept the choices that people were making, and to learn to respect

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the ways that people empowered themselves. So Paul was really one of the people who helped me to be effective in working with people with HIV.

Hughes

Wasn't he one of the few staff members who was consistently in the clinic?

Schietinger

Right. He was there.

Hughes

The others were coming and going.

Schietinger

Yes, that's very true.

Hughes

Was there anybody else that was around when you were around?

Clinic Routine

Schietinger

The Thursday morning crew became regular. And there were a number of community physicians who came in and donated their time. There was an internist who came from Daly City, [Arthur Halliday], a very wonderful physician who did a complete history on every person. Marc recruited him to come in to do physicals systematically so that everybody got a full physical when they came to the clinic, and then Marc would do the dermatological exam.

A year had transpired since my arrival by the end of 1982. The clinic was very systematic by this time. This group of physicians would come in, and they would be there for clinic from eight Thursday morning until I think it was about one o'clock, when the KS Study Group convened. There was a certain number of slots for patients on Thursday morning, and I would fill those, and then I wouldn't accept any more clients for that clinic day.

Then the KS Study Group happened when clinic was over. The patients came, got what they got, and had to leave. Then we were all focused on this forum, where there would be a presentation and scholarly discussion about what was going on and the newest findings about AIDS.

I can't remember what Paul did. He must have come in during that time and seen people. I think we found a room somewhere else, separate from the clinic, that he could bring people to. Maybe he went in my office. But he was able to sit and talk to an individual for perhaps an hour.

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I always had people come in a day or two before clinic, because there was no way that I could coordinate everything that was happening and keep things going, and also actually sit down and talk to people. I needed an hour and a half with each person. Well, I didn't at first, but then they wanted to sit and talk. They wanted the time. They wanted to be able to ask questions, and they needed to know what to anticipate. So I gave myself that hour and a half by having people come in before their appointment in the clinic.

Other regular people coming to the clinic: Steve Mehalco, who was a general practitioner. He was a gay physician who had, I believe, a private practice, but he came in and donated time. He and Arthur Halliday are the only ones I remember as being regular physician volunteers. Then there were the people that always came to the study group. It was always a delight to see the folks and talk about things together. But it was a very small group of regular people. Paul Volberding and Donald Abrams were there, of course.

Hughes

So Paul and Marc and Donald and Steve and Arthur were the physicians always there on clinic days?

Schietinger

On the clinic morning, yes.

Hughes

But not in between? You said that Abrams was sometimes around between clinics.

Schietinger

Well, he was seeing lymphadenopathy patients in the oncology clinic.

So he was still not focused on the KS Clinic at all. There really was no clinic except on Thursday mornings. Then in between there was me doing the follow-up and the follow-through and the coordination or the scheduling--there was a lot of scheduling of things that needed to happen at other non-clinic times.

Handling Biopsies

Schietinger

To schedule someone for a lymph node biopsy would mean making that appointment at the clinic where they would be biopsied, making sure that I could get the dry ice, be there

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when the physician was doing the lymph node biopsy, and then take the biopsy specimen. I was always very concerned about the emotional well-being of the people who were going through these processes. They usually were afraid; they were afraid of what was happening to them, and they were afraid of what they were going to find out.

So I felt it was useful for someone that wasn't a stranger to be there when a patient came for one of these procedures. Then I would have to take the specimen and go over to the pathology lab, and have one of the people in the pathology lab section the specimen so that parts of it could be frozen and taken to a particular lab, and some of it could be taken in saline over to somebody else's lab, and something sent over to Larry Drew's lab at Mt. Zion Hospital. So there was a lot of coordinating and a lot of keeping track of the requests of the various people who were doing some of the initial--I wouldn't say research, but fishing expeditions--to find out what was going on with this new disease. So there was a lot of accommodating that I had to do.

I remember once bringing a biopsy specimen over and having it sliced, and I was very aware that the pathology lab is the dirtiest place in the hospital. It is a nasty, filthy place where there are these parts of bodies that are being thrown around. There's nothing sterile about it. But I needed to keep this specimen sterile because it was important to see what was growing in the lymph node. So it had to be cut by the pathologist for some reason, but it had to be sterile, and their environment was not sterile. So I had to bring over all the sterile equipment and supervise them to make sure that they didn't break sterile techniques, so that whatever I sent over to Larry Drew wouldn't be contaminated.

While I was waiting for a pathologist to come around and be ready to do this, I noticed that the poor lymph node was drying out. I went over to Jay Levy's lab--he wasn't there, but somebody else was--and I asked for some sterile saline and opened the top to the jar that the specimen was in. They knew that it was a lymph node from a person with Kaposi's sarcoma. I remember them yelling, "Don't open that! Don't open that!" These people, whom I considered the insiders who wouldn't be afraid, were very afraid of the virus popping out and flying through the air. But they knew something that I didn't know. They worked with biohazards under stringent laboratory conditions, and I suppose associated AIDS with viruses such as Ebola. They were

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trying to isolate an unknown infectious agent, and had a healthy respect for what they didn't know.

Attitudes towards and of the KS Group

Hughes

How did outsiders see this group and what it was doing?

Schietinger

Was it on tape that I described the clinic administration's attitude toward me?

Hughes

Yes.

Schietinger

So there was the attitude that this clinic was a waste of staff time. Outsiders lacked the perception that this epidemic was a very significant thing that was happening.

There was the handful of scientists--people like Art Ammann and Conrad Casavant and the folks who were involved in research as a part of their clinical practice, or in pure research in some cases--who were very concerned and interested from a scientific point of view. As I said, the disease was a big mystery. It was a big epidemiological mystery to be solved. So there was something fascinating about it.

My impression of most of the people who were initially working on the disease from that end of things--Larry Drew and the people that were the most involved in donating the resources of their labs, as opposed to the disinterested people that wouldn't donate any resources and didn't care--were concerned both on an intellectual level and on a personal level. I think there was an awareness that this epidemic was very, very serious. The fact that it was a sexually transmitted disease that was killing people, and was probably caused by a virus, and therefore was not going to have an easy cure, was there in those people's minds.

I know that Jay Levy was very concerned about the issue of how the agent was transmitted. They had special biohazard hoods in their lab and were working with very dangerous viruses. They knew back then about the things that Laurie Garrett just wrote about in her book, The Coming

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Plague, which is fascinating. I didn't have any idea back then.

Most of the people that were there in the very beginning of the epidemic have continued to be involved. They were involved before there was money, and then the rest of the world got involved when there was money.

Motives for Involvement in the Epidemic

Schietinger

In June 1982, I went to Houston to the Lesbian and Gay Health Conference, which had met for a number of years. But there was in 1982 a forum, a panel of experts to talk about this new disease. I had come from the KS Clinic; Jim Curran had come from the CDC; and then there were some physicians from M.D. Anderson Cancer Center.

##

Schietinger

Before the panel began, we stood around and introduced ourselves. Some of the physicians were talking at that time about their tickets to Stockholm. I really did not make a connection until the International AIDS Conference was actually convened in Stockholm [1988], and I realized that the Nobel Prize is given in Stockholm and that these physicians were very interested as researchers in the possibility of getting the Nobel Prize by discovering whatever this virus was, or doing whatever would cure AIDS, or whatever.

The conference in Houston was held when the acronym AIDS had just been invented. Or maybe it hadn't even been invented at that point, because the workshop was about Kaposi's sarcoma.

Hughes

It was the summer of 1982, when the CDC--

Schietinger

Finally made that official.

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I think there were some opportunists early on who saw this disease as an opportunity to become rich and famous. But for the most part, before there was research money available, the people who were involved were in it because they were concerned. Then, of course, there were the people who were already connected to the gay men's community, and the health providers providing services to the people who got sick, wherever they were coming from, who were very touched and concerned on a personal level. And then I think all the researchers became personally touched as they worked with people with the illness.

Specimen Collection and Banking

Hughes

You talked about the importance of collecting specimens. As early as 1982, specimens were beginning to be banked, I think on a rather erratic basis.

There was no funding for the bank yet.

Schietinger

That's true. Specimen banking was irregular and informal.

Hughes

Were parts of every specimen saved for the bank?

Schietinger

Not unless somebody was there to grab it. If I wasn't there to say, "This is not just a specimen to be looked at for the pathology of it," then I think a piece of it would go over to Dick Sagebiel's lab and he would do the pathology reading. And I guess the rest of it would just be thrown away. Certainly the university was not saving anything. Maybe Dr. Sagebiel was saving some; he might have been concerned about being able to go back and look at specimens later.

Hughes

I think it was the appropriation from the state of California in 1983 which provided the first money for an AIDS specimen bank at UCSF.

Schietinger

Interesting.

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Hughes

But that money may have come after you had left the clinic. Is that the case?

Schietinger

I think it did. John Greenspan was already making some space available in his freezers for AIDS specimens, but it was all donated.

Informed Consent and Confidentiality

Schietinger

There was no system for labeling specimens, and early on, there was no awareness within the clinic that there was any need for informed consent for specimens to be saved, or any concern about confidentiality or anonymity or unlinking of the specimens from the name of the person from whom they came.

I don't think the need for confidentiality occurred to anybody. It didn't occur to me until I found out that the CDC was very concerned. When I collected blood for the CDC, people signed a consent form that I sent with the blood. I don't remember if I just numbered the specimens with some numbering system, or if I put the name on them. But the CDC kept all of their data in a locked file cabinet in the basement offices at CDC in Atlanta. The CDC had a big file cabinet that had this huge iron thing on it with a huge padlock that was locked, and then the room was locked. They were extremely conscious from the very beginning of the importance of protecting the confidentiality of anybody whom they were working with.

Hughes

Where did that concern stem from?

Schietinger

I think they were mostly people who had worked in the field of STDs [sexually transmitted diseases]. The field of STDs already had a very careful legal system set up to protect people, because it was acknowledged from the beginning that people would not come for STD treatment unless their confidentiality was protected. So in order to gain the trust of the public that they were trying to protect, the CDC needed to take very careful measures to make sure that the names of the people who came to the clinic wouldn't be in the paper the next day. That sort of thing.

I was more concerned with confidentiality of patient charts, knowing that in the gay community people are worried about going to a gay bar and then getting arrested by the

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police and having their name in the paper the next day. There's a very real fear of the stigma of being homosexual. But somehow, the laboratories to me were off limits, out of the real world, so that wasn't a part of it that I thought about.

Hughes

Apparently, nobody else did either.

Schietinger

Right. So it wasn't until later that careful, systematized, unlinked data collections happened.

Hughes

Later, meaning after you left the clinic in spring 1983?

Schietinger

Yes, I think so. I don't think we ever did set up anything that was unlinked. It came with the funding. It came with then having to be approved by the human subjects committee [UCSF Committee on Human Research], whereas before, it was an extremely informal process of data gathering that wasn't really considered research.

Hughes

And didn't involve federal money.

Schietinger

Right, that's true. Although I would imagine that the American Cancer Society would have expected, if there was research going on, that there would be protections and an approval by the human subjects committee, et cetera.

So I feel good that I went through a process of connecting with the human subjects committee and getting an informed consent and a protocol developed, but it still was a pretty informal process, and didn't cover things in the way that later became very formalized, as formal research happened.

Hughes

Do you think that the epidemic itself had any influence on IRBs [Institutional Review Boards] and consent forms and the paraphernalia associated with obtaining patient consent? Because of the need to maintain patient confidentiality, did the regulations become more stringent, or were they already?

Schietinger

For research, they already were. I think that within the world of research, most people were aware, or had to be made aware, of the requirements of human subjects committees (such as where they were going to keep their files). They were asked those questions as they submitted their research protocols to the human subjects committee for approval.

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Infection Control

Schietinger

The place that it did have an impact was in patient care, on the level of labeling specimens going to the lab. Early, all the specimens from people with AIDS were labeled in some way. I can't remember; I think it was something like, "AIDS/Hepatitis B precautions," or something like that.

That was what was put on the front of the chart that was put on the patient's door, and that was put on all the specimens that went to the lab.

And then there was very quickly an awareness that that was a horrendous stigma to put on somebody, and then the labelling was changed. This awareness happened hospital to hospital; you would say just, "Blood precautions." It was actually the infection control practitioners who argued with the care providers and the policy makers that nothing different was supposed to be done with these specimens. That you never were supposed to touch the contents of a specimen jar anyway, and you should never do certain things.

Hughes

Regardless of whether or not the specimen came from a person with AIDS?

Schietinger

Right. So the concept of universal precautions did get developed. Grace Lusby was very important in my understanding of the whole rationale for not stigmatizing somebody by labeling things from them.

Hughes

There was no need to if universal precautions were observed.

Schietinger

Absolutely no need.

And the fight over that was tremendous. It was very difficult. When I went a number of years later [1986-1988] to the California Nurses' Association to be in charge of a program to train health providers about AIDS [CNA Train the Trainer Program], we taught people all over the state about universal precautions. The rank and file of the California Nurses' Association was calling up the office and the California legislature saying, "Those people up there at CNA

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don't represent us. We don't want universal precautions. We want our patients tested and labeled." [laughs] And it was very difficult to reach people who were really afraid and to change their conception of what it was they were protecting themselves from and how they needed to protect themselves.

Treatment for Kaposi's Sarcoma and Opportunistic Infections

Hughes

Talk about treatment in the early days. What did you do once a person was diagnosed with KS?

Schietinger

If they had fairly advanced KS, they were referred up to the oncology clinic, where they would be treated with chemotherapy. There was one young man who had huge lymph nodes. His whole neck was visibly swollen with Kaposi's sarcoma. The chemotherapy quite effectively reduced the lymph nodes and rendered him very able to function and continue living his life for quite some time. So if the KS was advanced, there was something to do about it.

I really am going to have to go look in my files and give you the thing that I wrote out to give to people. We started talking about the importance of nutrition and reduction of stress and doing things to take care of yourself--trying to stop smoking, and that sort of thing. Take aspirin if you have a fever, make sure you have plenty of liquids, not to feel bad about sleeping, to rest as much as you need. And really, that was about all we had.

We didn't have acyclovir. It was an experimental drug. They didn't know if they trusted it or not at that point. I think that they were just starting to use acyclovir topically, but there was no internal acyclovir, it seems to me. I may be totally wrong about this, but it seems to me that acyclovir had not been approved yet when the epidemic started. Certainly when someone had a really bad herpes infection, prescribing acyclovir was not something that was just automatic. I don't think it was used.

Hughes

How did you handle opportunistic infections? Were they referred to the infectious disease specialists?

Schietinger

Yes. Usually people wouldn't come to the clinic with an opportunistic infection. They would have gone in an acute

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illness to an emergency room or to their physician. I know that a number of people were treated inappropriately with antibiotics when they came in to an E.R. with some nonspecific kind of pneumonia, sent home, would come back worse, would be put on another antibiotic, be sent home, and then they would come in extremely hypoxic and have to go immediately into ICU and be put on a respirator because they had gone into respiratory failure. At which point they would be diagnosed with Pneumocystis pneumonia.

As time went on, the people who came to the right doctors would be worked up appropriately and expeditiously and treated quickly. Or if they already had KS, they would be followed very closely by someone who would suspect Pneumocystis pneumonia. Actually, one of the things we were doing in the KS Clinic was to do baseline pulmonary function tests. (I guess that was another thing that I had to schedule for them.) The staging that people went through was to get a baseline of what their overall functioning was. So I would schedule them to go to the pulmonary function lab, and they would go through a number of exhausting tests.

Hughes

Which were aimed at deciding whether indeed they did have Pneumocystis?

Schietinger

No, this was for asymptomatic people: What is the status of your lungs at this point? Then they were able to identify abnormalities in the pulmonary function studies that were early signs that this person was coming down with Pneumocystis pneumonia. Which is very, very difficult to diagnose. It can have a very slow onset, an insidious onset, that doesn't look like anything. It's subclinical. But they actually were able to identify some particular patterns of respiratory dysfunction that were associated with the beginnings of a Pneumocystis infection.

So a lot of that baseline stuff helped the pulmonologists to begin to make some conclusions and to know how to work people up. At that point, if someone was diagnosed, they would have admitted them to the hospital and treated them for the Pneumocystis pneumonia. Depending on the hospital they were in, they would go into respiratory isolation for fear that it was infectious through the air. Nobody knew enough about Pneumocystis pneumonia in adults to know whether it was or not.

After I went to the Shanti Project and was working with people living with AIDS in the community and having contact with people in their everyday lives, it became clear to me

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how little I had known about the people who came to the KS Clinic. Before working at the KS Clinic, I had done a lot of home care, and I have made a lot of home visits in my profession as a nurse. It's a very, very different situation to visit someone in their own environment, where you have a lot more cues as to what's going on or what's not going on, than when somebody walks into a clinic with all their defenses up and wanting you to think that everything's fine.

One of the things I feel that we probably didn't pick up in the clinic setting was what later came to be called HIV dementia, AIDS dementia. I began to be very sensitive to the subtle signs of it when I was visiting people in the residences and seeing people as they were functioning and interacting, and talking to people's roommates who were beginning to be worried about them. But we didn't know anything at the beginning to be suspicious of. So it was not until someone began to have signs of a stroke that it would be diagnosed as toxoplasmosis. They would be in pretty acute stages of the infections before anybody diagnosed them.

So one of the things that has been a tremendous advance, through experience with the natural history of the disease, is that things are picked up earlier. It's not just that we have the treatments, it's also that they're picked up earlier, or that people are put onto prophylaxis so that they don't come down with them. Those things just make a tremendous difference. It's so exciting that those things have actually become the standard of practice, and none of it was there in the early years.

Patient Referrals within the Hospital

Hughes

Clarify the picture that I am developing of patients coming in with a variety of symptoms, and consequently going to different places in the hospital. You mentioned the emergency room. They of course could be referred to the KS Clinic. Supposedly if their primary problem was an opportunistic disease, they were referred to an infectious disease specialist.

Schietinger

Or a gastroenterologist.

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Hughes

Was it the referring physician's task to figure out where best to send his patient?

Schietinger

Well, in the KS Clinic we didn't ask very many questions about insurance. That got taken care of with the billing folks. They were billed--their insurance was, or whatever--for a visit to the dermatology clinic. When the clinic physicians decided they wanted to do a particular work-up, they didn't refer back to the referring physician, I don't believe. Finally, Marc actually did develop a systematic way of dictating his notes, but also dictating letters to the physician describing what was going on. I think it took at least a year before there was that protocol and that relationship developed with the referring physician.

I think the pulmonary function studies were all free. They couldn't be justified medically. Most of the tests, like the lymph node biopsies, were medically justified. If the person had been referred to UC, they went to UC for the tests, not back to their existing hospital.

Hughes

If a patient had multiple symptoms--KS and an opportunistic infection, maybe even lymph nodes--where did he go first?

Schietinger

When they came to the KS Clinic, that was their central place, unless they needed chemotherapy, in which case they were referred to the oncology clinic. If they were referred for tests or a consult, a GI [gastrointestinal] consult, the results would be reported back to their medical record, which then we would make sure came to the KS Clinic with them. So I suppose that initially what became the group of physicians that met regularly in the KS Clinic was essentially the group of experts seeing AIDS patients in San Francisco.

Hughes

That's understandable, as long as the patient had KS. What if a patient came in with just Pneumocystis? What would happen to him? He wouldn't come to the KS Clinic.

Schietinger

He wouldn't come to the KS Clinic. He would go to his regular physician, and there were people like that all over the city, in various doctor's offices and hospitals. There were a number of times when there was somebody (a researcher) who would want to do a series of lymph node sections to look at a bunch of things, so I would send a specimen from the next five lymph node biopsies to that person. There were some times when someone wanted a lot of blood specimens from a lot of people, and I would be referred over to a patient at San Francisco General, or to

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Kaiser, or to the VA Hospital, to draw blood and bring it back.

Hughes

For the researcher?

Schietinger

For the researcher, yes. This was mostly a research clinic, and essentially it never became a place for patient-centered care.

Hughes

It was a research clinic that was structured around KS.

Schietinger

Right.

Hughes

That was why the patient was there. If he had other problems, he was referred from there.

Schietinger

Right. But they were also looking at pulmonary functions, they were looking at--well, for the GI studies, the sigmoidoscopies had to do with looking for KS in the GI tract. Because this KS Clinic was where there was a group of patients, as opposed to individuals in various private physicians' offices, this was a place to systematically access patients with the strange new disease.

##

Schietinger

For example, Art Ammann was testing a theory. He really was looking at the immune system, and he wanted to know about the function of the cellular immune system. So we were recruiting a certain number of people to be immunized against a common infection--actually, I don't remember what it was. Then we were doing a series of skin tests and looking at the ability of the immune system to respond, at whether there was a skin reaction or whether the person was "anergic," and then drawing blood to see what the T cells were doing. That didn't really have anything to do with the KS. But there were enough people coming to the clinic to be studied that those kinds of studies could be done with them.

But if people needed medical care, for the most part, they had to go back to their own doctors.

Hughes

Don Abrams' lymphadenopathy patients weren't necessarily presenting with KS, were they?

Schietinger

No. They would go to the oncology clinic. So there was another place that people were being referred if their symptoms fit the criteria.

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Hughes

How was he getting those patients to begin with?

Schietinger

The same way that Marc got patients to come to the KS Clinic. He got physicians to refer people to him. He got physicians to be suspicious that lesions were something to be concerned about, through meeting with community physicians. Well, there actually already was an organization. The Association of Physicians for Human Rights was a lesbian-gay physicians' association which had a local chapter in San Francisco [Bay Area Physicians for Human Rights]. So there was already a network of professionals that could be accessed through an association. But also I think just word of mouth, periodic rounds at the various hospitals perhaps. It was pretty informal that way, I think.

Defining A Case of AIDS

Hughes

How early was it clear that all these different conditions were aspects of one multifaceted disease?

Schietinger

It already was clear when I came aboard, at the first KS Study Group that I came to in 1981. That was already the conclusion. The list of people with this new disease wasn't just the people at the KS Clinic. The list was a list of names, and the hospital they were admitted to, and whether they were still alive or not. And there were a number of different diagnoses on that list.

The central fact in San Francisco was being a gay man with an unexplained illness that didn't get better with treatment, and therefore bizarre infections were looked for. That was the key. The known quantity was being a gay man. I'm sure it was more problematic in New York, with injecting drug users getting AIDS.

Hughes

I can't remember when the CDC first mentions risk groups, or whether that first definition is aimed just at gay men.

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The Role of Epidemiology

Schietinger

Oh, the definition has nothing about risk groups in it, and it never has. It's brilliant. You know, epidemiologists are pretty smart people. I have a real deep respect for them. I'm really impressed at what they came up with so early. Because the CDC definition applied to anybody with an illness that happens only in people with an immune deficiency, but with no other reason for that immune deficiency. (And then they list reasons for having an immune deficiency, such as treatment for cancer.)

The definition included an age limit, so anybody over sixty-five doesn't fit because your immune system deteriorates after sixty-five. And then they list specific diseases associated with AIDS. But they also at that point kept open the possibility that they would find other opportunistic diseases.

Hughes

Are you thinking mainly of the CDC epidemiologists, or are you also thinking of the local epidemiologists?

Schietinger

I tend to think of the CDC epidemiologists, the ones that went to New York and did the case-control study, the ones that actually put two and two together about the injecting drug users and were suspicious that something was going on. Although I'm sure that Selma Dritz was part of that at the very beginning, but I have a feeling that the CDC epidemiologists were really the first ones to look at it, except for the clinicians, and those weren't epidemiologists. The clinicians were saying, "There's something going on here, because in my patients, this is happening." And that was how they identified that they were all gay men. "Well, now we've got some Haitians." "So, why are these Haitians included in the risk groups for AIDS? There's no reason for them." That never did fit.

Hughes

You mentioned the locked cabinet where the CDC kept its specimens.

Schietinger

Well, its records. Its specimens weren't kept in locked cabinets. I already said they had to not have names on labels. I had to not send names to the CDC. I think I sent numbers. They sent me the labels to put on, with numbers on them.

Hughes

Did the CDC epidemiologists occasionally come to the KS Clinic?

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Schietinger

I don't remember them coming to the clinic, but I'm sure they did. When they came to the city, I would think they would have wanted to see some patients. They certainly came and spoke at the KS Study Group.

Hughes

But you don't have memories of those now-famous people?

Schietinger

Right. I remember sitting down and having long talks with Andrew Moss, Michael Gorman, and some other local epidemiologists, and Bill Darrow, and Harold Jaffe and Jim Curran from CDC. But I don't remember them in the clinic.

Hughes

Speaking of Andrew Moss, do you remember that in the spring of 1983, there was a furor over the census track data that he was collecting, and his discovery of the high incidence of AIDS in the Castro District of San Francisco, and whether to release the data or not?

Do you remember discussions?

Schietinger

I don't remember discussions. I know that that was an issue.

AIDS Education

Debate over Approach

Schietinger

That summer there was also an issue about how to go about doing education, whether to use scare tactics or to use health education principles in which you give people achievable goals with increments so that they don't feel as if it's hopeless, and they'll never be able to change. That discussion was also happening at the same time.

Hughes

In the clinic, or just in general?

Schietinger

In general. At the Denver conference. After I went to speak at the Houston Lesbian and Gay Health Conference [1982], that conference happened the next year [1983] in Denver. Attached to it was an AIDS forum. It was the second AIDS forum; the first one had been the one that I spoke at. I was a chairperson for the second one in Denver. All of those issues were dealt with and thrown around and

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struggled with among primarily lesbian and gay clinicians at that conference, and also activists from New York and from San Francisco and other places.

Hughes

With any resolution?

Schietinger

Well, there was some resolution, but the biggest problem was that the epidemiologists couldn't guarantee safe sex. They couldn't say, "This will absolutely for sure protect you against AIDS." The gay community wanted guarantees, wanted to be told: "You can do this; you can't do that," and nobody was going to do that. The only thing that the clinicians were willing to do was to say, "These are the things we know. These are the things that may protect you, and this is what you have to choose from. Here's your menu. Now, you make your informed choice once you educate yourself. Decide how much of a risk you're willing to take, how much of a risk is worth it to you." So that underlying problem got in the way of a lot of things.

Steve Morin, who now is working with Congresswoman Nancy Pelosi and has been working very closely on the Hill with AIDS legislation, was one of the people we invited to be a co-chair for a workshop that was called, "Changing Sexual Mores among Gay Men," or some awful title. He was a gay psychologist who was working in the gay community, and I've forgotten who his co-chair was.

What we had wanted to do was bring together people from the media, from the pornography industry, essentially to talk about ways of eroticizing safe sex. But that conversation couldn't happen, because the community was still obsessed about whether or not using a condom was absolutely safe. If the doctors weren't going to tell them that, and the epidemiologists weren't going to say, "We guarantee that if you use a condom, you will not get AIDS," then nothing could move beyond that.

Hughes

How frustrating.

Schietinger

Yes, it was very frustrating.

Bobbi Campbell's Brochure

Schietinger

In the meantime, some of the first activism had already happened. As I said, Bobbi Campbell had put posters up of

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pictures of his lesions, but he was also one of the Sisters of Perpetual Indulgence doing street theater. They had put out--and I don't have a copy of it--the first safe sex brochure related to AIDS. They put out a brochure with cartoons, and it was just wonderful. It was a fantastic little brochure. I'm sure I have it somewhere in my files, but I couldn't find it when I was looking for things.

Hughes

That was how early?

Schietinger

It was certainly early 1983 for sure. Could have been late 1982. But it was informal.

Hughes

Was that one of the first educational efforts?

Schietinger

That was the first educational effort in SF.

Hughes

So it took quite awhile, didn't it?

Schietinger

Yes.

Hughes

Was that a question of numbers of AIDS cases before people realized that the disease really was a public menace, that you'd better warn people?

Schietinger

No. I think there were a number of things going on. There were different organizations involved in different parts of it. The health department was a cumbersome place. There was the Office of Lesbian and Gay Health, which was working with the epidemiologists to give correct information and to figure out ways of educating that wouldn't scare people.

There were the BAR [Bay Area Reporter] and the other gay newspapers which were perfectly happy to have sensational stories about AIDS in the front of their paper. But they certainly did not want to have any decrease in the ads that were bought by men that were selling sex, the bathhouses that were selling sex, the bars that were selling sex. That was the major place gay newspapers got their money. So there really was a schizophrenia in all the newspapers--well, no, Coming Up was different. But the San Francisco Sentinel and the BAR were sort of schizophrenic in their desire to support and to be worried about the AIDS epidemic as news, but to separate that from their source of income. And that was true in the bathhouses.

Hughes

The gay community was also protective of the civil rights it had won.

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Schietinger

Absolutely. That's very true.

Hughes

So I imagine there was schizophrenia there, too.

The Bathhouses

Hughes

How do protection of gay rights and the health and welfare of the gay community relate?

Schietinger

Right, the bathhouse issue. The arguments centered around whether or not the bathhouses are a good place to educate people. Keep them coming and educate them was one argument. Other arguments: Close the bathhouses; this is where people are having all the sex, and, Don't close the bathhouses, because this is a hard-earned right. If you close the bathhouses, they're going to close the bars, and they're going to use this as an excuse to get all gay people off the streets, et cetera.

So yes, all of that was going on. There were various positions taken by the different political clubs. There were a lot of factions that I didn't connect with because I wasn't part of the political scene that was happening.

Hughes

Did you nonetheless feel the tension at times, because in a way, you were wearing two hats.

Schietinger

Right, I was absolutely.

Hughes

You are a member of the gay community, and you made that very clear. You're also a health provider. And those two roles were sometimes in conflict, were they not?

Schietinger

They were in conflict. There was a part of me that was very concerned about the welfare of gay men who needed their self-esteem and to be validated for being gay, and the part that acknowledged that this disease is sexually transmissible.

A Study of Long-term Partners

Schietinger

I'm going to shift gears a little, but maybe we can come back to it. One of the things that we started to do before I left the clinic was to do a prospective study of the long-

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term partners of the people in the clinic. This was another one of those things that was done with no protocol, no formal connection to the human subjects committee. We invited the lovers of people coming to the clinic to go through a process of getting the baseline studies done, and getting lots of blood work, and a full physical, and a work-up, and to be followed to see if indeed they got sick, or to try and find out what was different about them, and why they weren't sick, if their lovers were sick.

I felt very satisfied in my own mind that there had to be something different about these two people, if one of them had gotten this disease and one hadn't. Clearly, this one must be immune to the disease, and therefore I was very reassuring to people who were the partners of people who were infected, that they were okay. One of the parts of my denial, was, "Okay, it is sexually transmissible. It's important for everybody out there who is sexually active in the gay men's community to start wearing condoms, but what do you do with these two people who are partners and who are lovers?"

I think essentially we counseled them that it would be a good idea for them to use condoms because of the possibility that there is a cofactor, and that continuing to be exposed to the virus was probably a bad thing. So there was advice being given to people. I think my advice differed from Marc's advice, as we went through time. He became more and more adamant that abstinence was really the only way to be sure, that you really should not have anal intercourse, essentially. That was the main thing he was saying.

Hughes

Even with your long-term partner?

Schietinger

Right, even with your long-term partner. I was saying, "We don't know, but it's up to you. This is what we see so far. One of you is relatively healthy, so make your own decisions."

Hughes

Well, I can see how two partners being told, "I'm sorry, but you just must not have intercourse at all," might say, "To hell with it." So maybe to avoid that response was part of your motivation?

Schietinger

Right.

Hughes

Don Abrams hoped that gay lymph node syndrome was not prognostic for AIDS.

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Schietinger

Yes, that it was prognostic for defense against AIDS, that these lymph nodes meant that your immune system was fighting the disease, and so that was good. I remember discussions where that was the theoretical positive outcome that might be true.

Hughes

There was no reason not to think at that stage that that might be a possible outcome. Now that we know that it's not true, it's easy to look back and say, "Well, I was in denial."

Schietinger

Yes, right.

The Clinic's Physical Layout and Functions

Hughes

What was the physical layout of the clinic?

Schietinger

Well, the clinic itself has a reception area, and there are chairs around for people to sit in in the waiting room.

Hughes

The clinic is used for many purposes?

Schietinger

It is used for dermatology, five days of the week, except on Thursday morning when it became the KS Clinic. We only had a limited time, because the clinic then would turn into a dermatology clinic in the afternoon, so we had to get out. Sharing the clinic space became less and less of a positive situation as time went on. But when I first started working there, we had full cooperation from the head nurse, the nurse who ran the clinic, and the staff did all of the billing, and whoever they could get insurance from, they did. I think we were assigned two rooms that we could use in the clinic.

A corridor that was an L-shape went from the waiting room, so that there were rooms along that hall, and then there was a right-hand turn, and more examination rooms as you went down the hall. At the end was the classroom, the large conference room that we used for the KS Study Group. My office was on the same floor for the first year, but way around the corner, so that I pretty much packed up my stuff and came around to the clinic when we had clinic.

I think I had assistance from a couple of the clinic assistants. There were a couple of clinic assistants who brought people into the examination rooms, and put the chart

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on the door, so the doctors could always move right on to the next patient. The KS Clinic went very differently than the dermatology clinic: we assigned one exam room to each doctor and moved the patient from room to room, as opposed to putting a patient in the room, and then having the doctor come to see him. Ultimately, we made the KS Clinic into an assembly line with each doctor being a station that the person moved to. It was a very fast-paced.

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Schietinger

Marc thinks fast. The man is brilliant. His mind is going all the time. He's hard to keep up with. And the same with everybody else. I mean, there was not an easygoing pace--well, that's not true, because both Marc and Paul, and certainly Don, did take time to answer patients' questions. When they were one-to-one with a patient, they were there with the person.

I always encouraged people to write down their questions. I've always told patients, "Make your list. Make sure the doctor sees the list so he knows that you've got four items on it, so he doesn't stop and dismiss you after the first question." I tried to structure it so that the patient could actually have that consultation with a physician that means so much to the patient. Sometimes it would happen, sometimes it wouldn't happen. But it was a very fast-paced, frenetic morning.

Hughes

And the patients probably felt that?

Schietinger

A lot of times they did. I think I felt it a lot more than they did, in my need to make sure that things kept going, and that people moved on quickly so that we could see everybody who needed to be seen.

Hughes

Did people keep their tempers?

Schietinger

Yes. I think so.

Hughes

There were no scenes.

Schietinger

No. There were no scenes. There were times when somebody wouldn't show up--

Hughes

A physician, you mean?

Schietinger

Yes, there were times when Marc would come over late, so clinic couldn't start. Or Paul would get stuck at San

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Francisco General and not show up. We could not extend the hours of the clinic. It was not negotiable. The clinic's administration begrudged us additional rooms when we asked for them. It was not a friendly environment to be in. I personally had nice relationships with the reception people, and we were on friendly terms, but that doesn't help when the entire KS Clinic is considered a sore thumb.

Fear of Infection

Schietinger

As there was more awareness of the infectious nature of this disease, more anxiety developed in the dermatology clinic. Then suddenly there were red plastic bags in all our garbage cans on the morning of the KS Clinic, and every bit of our garbage had to go into the red bags and be tied and thrown away, even though most of what was being disposed of was just regular garbage. All of it was not supposed to be touched anyway. Remember, this was supposed to be universal precautions! But it didn't help. So their clinic staff's anxiety was very difficult to allay, and their overreactions to the KS Clinic's existence were difficult to put up with.

Hughes

Was there fear of the patients themselves?

Schietinger

I don't remember any staff wearing masks. That would be the true sign, if staff were wearing masks around the patients. But there was also a real valid reason for there to be anxiety. One of the residents who was doing a biopsy sliced her finger very seriously with a scalpel. That was one of the first serious exposures to the blood of an HIV-infected person, and it was very frightening for everybody. It was very frightening. There was no HIV test, for one.

Hughes

Do you remember when that was?

Schietinger

No, I don't. It was sometime during the eighteen months when I was nurse-coordinator [laughter]. We can narrow it down to these months [January 1, 1982 to late spring 1983].

Hughes

The years before discovery of the virus.

Schietinger

Absolutely.

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Community Services

The Shanti Project

Hughes

Have we said enough about the community volunteer system?

Schietinger

Early, there was no community volunteer system.

There were two things that did start happening early. One was with the health department's Office of Lesbian and Gay Health. But in terms of volunteer services: the Shanti Project was a little organization in Berkeley that was about to go under. It was a little agency that was not a hospice agency; it was an agency that trained volunteers to do bereavement counseling. Volunteers would meet with people who were losing a loved one, or who had lost a loved one, and help people go through the process of loss surrounding death.

Their board tried to dissolve the organization, and the volunteers decided they didn't want the organization to fold, so they took over and became the board members. One of the volunteers was Jim Geary. I don't remember ever meeting him back then, but he had the first support group for gay men with this strange disease. I don't know how it got together, but there was a small group of men with Kaposi's sarcoma who met together.

Shanti resuscitated itself to provide volunteer services to people with AIDS. As the volunteers became the board members, they reshaped the organization to do that. Jim I think had been a ward clerk or ward attendant, and quit and went on unemployment. While collecting unemployment, he worked as the director of Shanti as they first got started in San Francisco. They recruited some volunteers, did a training, and made themselves available to patients.

So after a few months of my being at the KS Clinic, there was this resource that I could refer people to. I could say, "There's the Shanti Project." It was very important at that point to have that resource, and I think the most important part about it was the support group where people could meet each other.

Hughes

Shanti, unlike their presence on 5B [the inpatient AIDS ward at SFGH], was not physically in the KS Clinic?

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Schietinger

No. There was never any contact with that clinic in terms of volunteers coming. People went to them. I think maybe one of the things that may have made the physicians feel uncomfortable with Bobbi's presence in the clinic was that a lot of people, when they came to the clinic, simply weren't ready to talk to anybody. A person has to be ready before he or she can take advantage of support service. I had to learn that the hard way.

At one point, we had a patient who was hospitalized and who was having a very difficult time emotionally. I think I referred him to Jim at Shanti, but then I asked Jim if he would come visit him in the hospital. So when Jim came to see him, he hadn't been contacted by this person. The patient felt that it was very invasive to have Jim come to see him, and didn't want to see him. He said, "I don't need any help." [laughter] So the dynamic of people taking the initiative and making the contact themselves, to say, "I would like to go to a support group," or "I want to have a volunteer visit me," was very important.

The Shanti Project actually was funded by the health department at the same time that the AIDS Clinic started at San Francisco General. The city had extra funding and wanted to make it available for AIDS services. They went through Pat Norman's office at the health department. Pat Norman was the coordinator of the Office of Lesbian and Gay Health. She helped to develop the proposal to make the money available. Suddenly there was this money available to the Shanti Project and to San Francisco General to staff an AIDS clinic.

That was the point at which Jim asked me to come work with the Shanti Project. I was hired to start the residence program. The funding determined when community support began to really become official and take shape. Prior to that, there really weren't any support mechanisms.

Bobbi Campbell

Schietinger

Bobbi Campbell, who actually was a nurse at UC at the time, had started to make himself available at the clinic and say, "I want to meet the patients." This was not seen as a friendly gesture by the physicians. They thought he was a little off the wall. They also thought he was kind of out of control. I think somebody called him hysterical. He was

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a flamboyant gay man. He was a Sister of Perpetual Indulgence. He was Bobbi Campbell. But he was also very, very serious.

He did make himself available to talk to people and to meet with people, and it was very important for people to know that there was somebody that was functioning even though he had AIDS. He articulated that concept very early and it was important for people with AIDS.

The Health Department's Community Clinics

Schietinger

At the same time that the KS Clinic was happening and Selma Dritz was working in the health department on the epidemiology of AIDS, the health department was utilizing its community clinics as places for screening. These were the places where people came for STD treatment. They had these "AIDS" protocols, and the people that were called the "worried well" were not supposed to come to the KS Clinic; they were supposed to go to the city health department clinics. The doctors there were supposed to be able to screen them and identify if they were really sick or not, and then send them to the KS Clinic if they had suspicious lesions. If they had symptoms of active infection of some sort, I don't know where they were referred before the AIDS Clinic opened at SFGH, because they certainly couldn't be treated in those city clinics for opportunistic infections.

Hughes

Did that system work fairly smoothly?

Schietinger

Well, it gave people a place to go. They were the worried well. These were people who needed emotional support, because they were afraid they were going to die of AIDS, because they had had sex with somebody that was sick. There was nothing to be done, except deal with that. Community Mental Health Services, I believe, did start providing some services to gay men. Oh, gosh, there's a whole--yes, I think there was something happening within Community Mental Health Services, but I don't remember. You should contact Pat Norman to talk about what was happening within the health department in those early days in terms of support services.

Ken Dunnigan, who died a year ago, I believe was the physician at the 17th Street Clinic, which was the main clinic where gay men went. He was a gay man who was very

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active in the early days in terms of developing the protocol for the worried well and probably training staff and that sort of thing.

Hughes

Is Pat Norman a health care provider?

Schietinger

She was a psychotherapist who before the epidemic had been the coordinator of the health department's Office of Lesbian and Gay Health. She established the office, and she was there for eight or ten years. I don't know what the ambivalence was around that becoming the office that would coordinate the AIDS funding. Perhaps it was the "AIDS is not a gay disease" struggle. An Office of AIDS Activities that was separate from the Lesbian and Gay Health Office got established when there was funding coming through the health department.

Thoughts upon Leaving the Clinic, May 1983

Hughes

Well, Helen, it's really getting late. I think the place to wind up is with those notes you wrote to yourself as you were about to move on to Shanti in May 1983.

[tape interruption as Schietinger reviews notes]

How did you use these notes?

Schietinger

I haven't the foggiest idea. It could have been the basis of a talk. Often, this is the kind of thing that I would do for a presentation. Or it could have just been my attempts to look at the things I learned from this experience. [Studies notes] But this doesn't look like that sort of thing. It looks much more like an assessment that I was trying to do for some purpose.

Ah, this is interesting. It's very interesting that we really did become a center of research with a reputation in the gay community. Oh, yes, an award. The clinic was given an award for community service at the Cable Car Awards, which is a big gay event to recognize people and

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organizations that have done things to contribute to the community. The clinic received an award because it was meeting an important need.

It was impressive how this group of people at the clinic on an informal basis was able to systematically take information and then review it, and decide to stop doing certain studies because they weren't informative. At a certain point, there was a decision made, "Let's not do lymph node biopsies on everybody; we're finding that it doesn't tell us anything. It doesn't help us to treat them unless they're really big or there are other symptoms associated, and we think it might be Mycobacterium avium or something."

It was a fishing expedition of necessity, but it also was clinically based to look at ways of impacting patients coming through the clinic.

[reading] "Developed written material for patients, to describe the work-up that was approved by the Educational Materials Committee." I don't even remember that. Oh, yes. I told Angie [Lewis] that I was writing something, that I was saying the same thing over and over again to each person that came through the clinic, and that I wrote it down to be systematic. She said, "Oh, somebody said you can't do that. It has to be approved by the education committee [UCSF Committee on Educational Policy]," or something like that. Anyway, it was reviewed, and then I handed it out to patients, and then it was fine.

It took us three to four weeks to get a patient seen at KS Clinic and then to get all the tests done in the staging protocol. I know that there were times when I actually would call to get a biopsy result directly from Dick Sagebiel. If someone was really anxious, I was able to twist his arm to read a result before Thursday, "Please, this one time, just look at this one." And he would do that, so that this person could come in on the day of the clinic and get his results. That was a tough call, because there are only so many times you can ask for that.

I say here in these notes, the members of the KS Study Group contributed to community and professional education. All of us were out there doing lots of talking, both to

---

other care providers in doing in-services, doing rounds, whatever, but also going to speak to various groups in the gay community that really wanted to know what was going on. The clinic was seen as a place people could come to ask questions. I got a lot of calls that were just informational questions in the first year, year and a half, before the AIDS foundation developed a hotline.

There was a lot of research that went on. Eventually, tissue was mailed away to other people for research purposes, and sometimes to people with strange theories who did very esoteric things. But the theory was intriguing, so somebody would like the idea and think it was plausible, so they'd come to me and say, "Could you arrange for five samples of normal tissue and abnormal tissue to be sent to this person's lab?" That sort of thing would happen.

We had two protocols going. The contact study was a prospective study of the lovers of people who were being seen in the clinic. But also, there was some blood work for--I can't remember what study it was, but they wanted serum from normal healthy gay men. We made the attempt to have that happen through the 17th Street clinic. A man named Ian Goller approached me and offered to do volunteer work in the clinic. He was a from Australia. He recently died of AIDS back in Australia. But he was very active while he was here, and then he went back to Australia and remained very active in making sure that services were available to people with AIDS.

Ian approached me in the first year and said, "I want to help. What can I do? I want to volunteer in the clinic." I wasn't supposed to have lay volunteers in the clinic. They were supposed to come through the volunteer office up at UC. But he actually worked with developing the protocol for obtaining these blood samples from the people that were the "worried well" at the city clinic.

So those things were started in that first year when I was working at the clinic. It's nice that I wrote all this down, because I would have forgotten.

---

Hughes

Yes, thank heavens you did.

Schietinger

I know I felt that certain things needed improving, that the primary physicians lost track of their patients, and that the patients didn't really want to go back to them. This is still a problem in terms of services to people with AIDS. A lot of people would prefer to come to a specialty clinic than to receive care from a "regular doc" in the community.

Hughes

Is that because they feel that they get better care from specialists?

Schietinger

Yes. Especially if the specialists are involved in clinical protocols. If they're already doing research with some of their patients, patients feel that they'll have access to some of the research. So one of the things that I worked on was making sure that there was a copy of the staging work-up, with all of the blood work results, that was given both to the patient and to the referring physician. I actually arranged to have a meeting with the person at the end of the staging process to give him all of his blood results on a piece of paper, and to explain to him what things meant. Most of it was just normal results, which was the very strange thing about it.

I don't know what my last comment here means. "Many studies want OIs [opportunistic infections]--obtain consent to cover AIDS." I think that I had developed a protocol for people coming through the KS Clinic, where they gave informed consent to participate in the research that was being done, and they understood that samples would be taken, et cetera. Researchers were beginning to ask for people who had opportunistic infections, not Kaposi's sarcoma. I was concerned that if we were going to begin to provide access to cases of opportunistic infection, we needed a different informed consent, and we needed to go through the human subjects committee again.

Hughes

Well, it's very late. We should stop. Thank you very much for your time.

Transcribed by Shannon Page

Final Typed by Julia Rechter

Appendices

Tape Guide

Interview with Michael Helquist, March 24, 1995

• Tape 1, Side A *
• Tape 1, Side B *
• Tape 2, Side A *
• Tape 2, Side B *
• Tape 3, Side A *
• Tape 3, Side B *

Interview with Jeannee Parker Martin, January 26, 1996

• Tape 1, Side A *
• Tape 1, Side B *
• Tape 2, Side A *
• Tape 2, Side B *

Interview with Helen Schietinger

Interview 1: January 30, 1995

Interview 1: January 30, 1995
• Tape 1, Side A *
• Tape 1, Side B *
• Tape 2, Side A *
• Tape 2, Side B not recorded

Interview 2: February 2, 1995

Interview 2: February 2, 1995
• Tape 3, Side A *
• Tape 3, Side B *
• Tape 4, Side A *
• Tape 4, Side B *

Index

• Abrams, Donald, 8, 10, 12, 14, 17, 45, 83, 98, 123, 130, 142, 149, 151
• Adult Immunodeficiency Clinic (UCSF), 121
• Agnos, Art, 68
• AIDS
  • activism/activists, advocacy, 27, 81, 105, 146
  • blood tests, 36, 57, 113, 149
  • Candlelight March, 46
  • cofactors, 108, 149
  • community services/health care, 59, 60, 70, 71, 155, 156
  • definition of, 77, 144
  • dementia (HIV dementia), 139
  • diagnosis, 77
  • education, 22, 23, 27, 35, 64, 74, 105, 145, 147, 148, 157. See also public health campaigns, AIDS activism
  • etiology, 108, 110, 112
  • hotline, 26, 28, 33, 158
  • information, 2, 3-4, 11, 12
  • legislation, 146
  • stigmatization, 23-24, 136, 137, 60, 62
• AIDS Foundation of San Francisco, 27, 31. See also KS Research and Education Foundation, San Francisco AIDS Foundation
• AIDS Health Project, 68, 84
• AIDS Home Care and Hospice Program, 67-67, 72, 73, 77, 80
• AIDS National Research and Education Foundation, 26, 28
• AIDS patients
  • advocacy, 103
  • anxiety, 101. See also fear
  • clinical histories, 98. See also sexual histories
  • education, 123, 124
  • family (of AIDS patients), 58, 67, 75, 77, 79, 86
    • "biological," 33, 42, 47
    • "gay," 42
  • informed consent, 102, 104, 135, 136, 159
  • "Person with AIDS," 28-29
  • rights, 15, 40
  • support groups, 153-154
  • visiting hours, 41
  • "worried well," 155-156, 158
• AIDS Project New Haven, 60, 64
• AIDS-related conditions (ARC), 4, 76
• AIDS screening (testing), 18, 44, 155
• AIDS social services, 59, 67-68, 75, 77, 118, 120, 123, 126
  • psychosocial services/ assessment, 34, 35, 124, 125-126
  • social workers, 58, 59, 62, 75
• AIDS specimen banking/labeling, 127, 134-135, 144
• AIDS symptomology/diagnosis
  • lymphadenopathy, 57, 130, 142
• AIDS therapies, 13, 74-75, 128
  • alternative therapies
    • acupuncture, 128
    • diets, 85, 128
  • drugs
    • acyclovir, 138
    • chemotherapy, 138, 141
    • interferon, 41
• AIDS transmission, transmissibility, 36, 61, 63, 102, 108, 110, 112, 132, 149
• AIDS virus. See HIV, virus identification
• AIDScom (AIDS communication), 4, 44
• American Cancer Society, 28, 62, 63, 104
• American Federation of AIDS Research (AmFAR), 29, 44
• Ammann, Art, 67, 111-112, 132, 142
• amyl nitrate ("poppers"), 13, 108
• Autrey, Beatrice, 73
• bathhouse controversy, 15-19, 147, 148
  • and AIDS education, 22-23
  • and gay rights, 20-21
• Bay Area Physicians for Human Rights (BAPHR), 15, 143
• Bay Area Reporter, 74, 106-107, 147
• biohazards (and waste disposal), 131-132, 152
• biopsies, 103, 130-131, 152, 157
  • of KS lesions, 101
  • of lymph nodes, 98, 130-131, 138, 141, 149, 157
• blood banks, 111
• Bolan, Robert, 83
• Bunn, Jim, 18, 44
• California Pacific Medical Center (CPMC), 33, 68, 82-83, 85
• California Nurses Association (CNA), 137
• Campbell, Bobbi, 5, 24, 30, 105, 146, 154-155
• Casavant, Conrad, 99, 132
• Castro Street/Castro district, 5, 24, 46, 47, 105, 145
• Centers for Disease Control (CDC), 4, 12, 13, 44, 63, 95, 102, 108, 109, 133, 135, 143-144
• civil liberty issues, 15, 147
  • confidentiality/privacy issues (and AIDS patients), 58, 102, 107, 135-136
  • discrimination (against AIDS patients), 39, 43
• clinical histories (of AIDS patients), 98. See also sexual histories
• Coming Home Hospice, 76
• Coming Up! (San Francisco Bay Area gay community publication), 2, 16, 147
• Committee on Human Subjects, UCSF, 136
• Community Mental Health Services, 155
• community doctors, 96, 97-98, 159
• Conant, Marcus, 12, 26, 28, 32, 94, 96, 97, 103, 105, 106, 107, 120, 122, 124, 125, 127, 129, 130, 141, 143, 149, 151
• Continuum HIV Day Service, 85
• Cowley, Patrick, 5
• Crane, Rick, 26
• Curran, Jim, 133, 145
• Dague, Paul, 35, 124-129
• Darrow, Bill, 145
• Davies Medical Center, 33, 39, 40
• death/dying issues, 47, 153
• Depree, John David, 44
• dermatology, 26, 106, 129
  • clinic, 103, 112, 141, 150-152
• Donnell, Mark, 85
• Drew, Larry, 131, 132
• Dritz, Selma, 46, 47, 105, 106, 144, 155
• Dugas, Gaetan ("patient zero"), 19
• Dunnigan, Ken, 155
• Dwyer, John, 54, 55, 56, 57
• East Bay (AIDS work), 44
• epidemiology, epidemiologists, 53, 106, 108, 111, 144-146
  • epidemiological data, 145, 155
• epidemic
  • first encounter, 5, 19
  • scope of, 24, 25, 44, 132
• family (of AIDS patients), 58, 67, 75, 77, 79, 86
  • "biological," 33, 42, 47
  • "gay," 42
• Feldman, Mark, 3, 7, 8-9, 10, 11, 28, 34, 36-38, 41-42, 46, 48
• fear (of AIDS infection), 36, 37, 39, 43, 56, 60-61, 77 94, 112, 114, 115, 138, 152, 155
  • of AIDS patients, 34, 152
  • both, 56, 60-61, 77
• Feinstein, Dianne, 15-16, 35
• Fletcher, Van, 122
• Follansbee, Steve, 14
• funding (for clinics and services), 66, 67, 68, 70, 72, 73, 118, 156
  • federal, 136
• Garfield, Charles, 30
• Garrett, Laurie, 132
• gastrointestinal studies, 141-142
• "gay cancer"/gay disease, 5, 6, 12, 93, 109
• gay community, 11, 23, 32, 33, 43, 60, 64, 106, 107, 109, 110, 134, 135, 157-158
  • collaboration with physicians/ health care workers, 13, 14, 73
  • gay lifestyle(s), 13, 58, 122
  • homosexuality, 31
  • homophobia (at UCSF), 60-61, 121
  • media, 5, 12, 14, 16, 18, 122
    • Bay Area Reporter, 74, 106-107, 147
    • Coming Up!, 2, 16, 147
    • San Francisco Sentinel, 5, 147
  • partners/lovers, 67, 80, 81, 149, 158
  • physicians, 97
  • politics, 16, 21, 31
  • gay rights, gay liberation, 20, 21, 147, 148. See also civil liberties
• gay and lesbian health care workers, 33, 35, 63, 96, 106, 107, 121, 130, 146, 148
• gay and lesbian political clubs, 23, 148. See also Harvey Milk Democratic Club
• Gay Men's Health Crisis (GMHC), 27, 29, 110, 27-28
• Gay Pride Day and March, 24. See also Lesbian/Gay Freedom Day
• Geary, Jim, 30, 80, 153-154. See also Shanti project
• Glenn, William, 85
• Goller, Ian, 158
• Gorman, Robert, 45-46
• Greenspan, John, 135
• Hall, Hadley, 66, 68, 70, 72
• Halliday, Arthur, 129-130
• Handy, JoAnne, 66
• Harvey Milk Democratic Club, 23
• Hatfield, Shelly, 124, 125
• Haitians, 110, 144
• Helquist, Michael, Int. 1-48
• hepatitis B, 108, 112, 115, 137
• Hernandez, Sandra, 82
• HIV (human immunodeficiency virus), 4, 9, 37, 56
  • antibody test, 56, 96, 152
  • virus identification, 45, 111, 133
• Home Health Services of San Francisco, 71
• homosexuality. See gay community
• home care, 59, 66, 71, 72, 74-75, 76, 79, 81, 84, 85, 86, 118, 140
• hospice, 30, 66, 68-69, 72, 73, 74, 79, 153. See also Shanti Project
• Hospice of San Francisco, 35, 65, 66, 68, 70, 71, 72, 73
• Hudson, Rock, 5, 44, 45
• Hughes, Anne, 85
• immunology/immunologists, 54, 55, 59
  • immune overload, 13, 109, 111
  • immune system, 98, 108, 142
  • lab, 99-100
  • T cells/T-cell count, 4, 37, 57, 59, 99, 100, 142
• infection control, 54, 61, 62, 112, 113, 114, 137, 184
  • care giver infection, 127
  • gowning, gloving, and masking, 61-62, 114-116
  • needles/syringes, 113-114
  • prevention programs, 4, 16
• insurance issues, 99, 118, 123, 141
• intensive care unit (ICU), 116, 139
• International Conference on AIDS, 4, 6, 44, 133
• I.V. drug users (injection drug users, IDVUs), 58, 60, 108, 109, 112, 115, 143-144
• Jaffe, Harold, 145
• Kaposi's sarcoma (KS), 5, 6, 7, 8, 9, 41, 96, 101, 105, 106, 114, 127, 128, 131, 133, 138, 139, 141, 142, 143, 147, 153, 155
• KS Clinic, UCSF, 9, 14, 26, 31, 35, 37, 43, 93-98, 100, 101, 103, 104, 106, 117-120, 122, 123, 129, 130, 133, 138, 140, 141, 143, 144, 150-153, 155
  • intake interviews, 73, 82, 100, 119, 125, 128
• KS Research and Education Foundation (KS and AIDS Research Foundation), 26-27
• KS Study Group, UCSF, 93, 96, 97, 106, 124, 125, 129, 130, 132, 143, 145
• Krampf, Wally, 14
• Kraus, Bill, 25
• lesbian (lesbian and gay), 17, 25, 39, 109, 110, 131, 122, 125, 127
  • lesbian involvement in AIDS epidemic, 24
  • physicians, 29, 33, 38, 146. See also gay and lesbian physicians
• Lesbian and Gay Health Conference (AIDS Forum at), 145
• Levy, Jay, 131, 132
• Lewis, Angie, 28, 93, 121, 157
• Los Angeles (AIDS activities), 44, 56
• Lozada, Francine, 8
• Lusby, Grace, 113-114, 116-117, 137
• Maitri AIDS Hospice, 72
• Margo, Glen, 44
• Martin, Jeannee Parker, Int. 49-87
• Martin, Michael J., 54-55
• Maxey, Linda, 127
• media coverage of AIDS, 190, 146
  • "20-20," 63
  • Ms Magazine, 3, 37
  • San Francisco Bay Guardian, 3, 46
  • San Francisco Chronicle and Examiner, 16
  • "Sixty Minutes," 63
• Medicaid/Medicare, 67, 68, 69, 70, 120
• Medi-Cal, 123
• Moed, Alison, 80
• Mehalko, Steve, 14, 40, 130
• Morbidity and Mortality Weekly Report (MMWR), 12
• Morin, Steve, 146
• Morrison, Cliff, 44
• Moss, Andrew, 145
• Mt. Zion Hospital, 131
• National Lesbian/Gay Health Conference (1983), 28-29
• National Gay/Lesbian Health Association (National Gay Health Association [NGHA]), 29
  • Health Conference, 109
• National Institutes of Health (NIH), 13, 64
• New York City (and AIDS), 27, 31, 42, 44, 56, 102, 112, 143, 144, 146
• Norman, Pat, 154, 155, 156
• Northwest AIDS Foundation, 28
• Novick, Al, 64
• oncology clinic, oncology experience, 73, 123, 130, 138, 141, 143
• opportunistic infections
  • candidiasis, 8, 9
  • Mycobacterium avium, 157
• Osman, Rick, 17
• patient
  • advocacy, 103
  • education, 123, 124
  • informed consent, 102, 104, 135, 136, 159
  • "Person with AIDS," 28-29
  • rights, 15, 40
  • visiting hours, 41
  • "worried well," 155-156, 158
• Pelosi, Nancy, 146
• Pepper, Claude, 86
• Pneumocystis carinii pneumonia (PCP), 4, 12, 41, 57, 76, 106, 108, 116, 139, 141. See also opportunistic infections
• Project Inform, 54, 85
• Project Open Hand, 84
• Public Health Department. See San Francisco Department of Health
• Rauscher, Frank J., 95
• research, 85, 99, 142, 158-159
  • clinical data, 98-99, 103, 136, 158. See also research on patients
  • on patients, 10, 11, 15, 103
  • protocol, 103.
  • See also clinical research risk behaviors/risk groups, 110, 143, 144
• Robb, Val, 85
• Ross, Bob, 106, 107
• Ryan White AIDS Core Act, 87
• Ryan White Care (funding agency), 77
• Sabella, Bill, 64
• safe sex issues, 17, 22, 23, 111, 146, 147
  • condoms, 23, 146, 149
  • prophylaxis, 140
• Sagebiel, Richard, 96
• Sande, Merle, 116
• San Francisco AIDS Foundation (SFAF), 28-29, 67, 80, 84
• San Francisco Department of Health, 15, 18, 44, 105, 106, 147, 154, 155
  • Office of AIDS Activities, 81, 156
  • Office of Lesbian and Gay Health, 147, 153, 154, 156
  • Seventeenth Street Health Center, 33, 155, 158
  • VD clinic, 33
• San Francisco General Hospital, 11, 14, 32, 33, 38, 39, 40, 70, 71, 82, 84, 85, 113, 116, 142, 152, 153
  • AIDS Clinic, 80-81, 83, 118, 120, 154, 155
• San Francisco Hospice, 35
• San Francisco model of AIDS care, 31, 35, 67, 87
• Schietinger, Helen, 9, 10, 11, 34, 37, 44, Int. 88-159
• sexuality, sex, 21-22, 23, 146
  • abstinence, 149
  • anal intercourse, 108-109, 111, 149
  • behaviors, 102, 108
  • education, 64
  • fist-fucking, 102, 108
  • habits, 101-102
  • history, 102-103
  • orientation, 93, 110
• sexually transmitted disease (STDs)
  • gonorrhea, 8, 33
  • herpes, 138
  • syphilis, 14, 33
• Shanti Project, 25, 30, 31, 35, 67, 68, 70, 80, 84, 118, 127, 140, 153, 154, 156
• Shilts, Randy, 18, 19, 23
• Silverman, Mervyn, 15, 16-17, 29, 44, 68
• Sisters of Perpetual Indulgence, 147, 155. See also Bobbi Campbell
• toxoplasmosis, 140. See also AIDS dementia
• University of California at Berkeley, 65
• University of California at San Francisco (UCSF), 1, 2, 7, 32, 43, 93, 117, 120, 121, 134. See also KS Clinic
  • AIDS Health Project, 35
  • Committee on Human Research (Human Subjects Committee), 103, 136, 159
  • Educational Materials Committee, 157
  • Institute of Health Policy, 65
  • institutional review board (IRB), 103, 136. See also Human Subjects committee
  • Medical Center (old name for UCSF), 8, 10, 11, 32, 39, 106, 114, 116, 125, 141, 154, 158
  • pathology lab, 131-134
  • Task Force on AIDS, 116
• VA Hospital of San Francisco, 116, 142
• Visiting Nurses Association of San Francisco (VNA), 60, 70, 71, 72, 73, 81
  • VNA, Inc., 66, 71
• Visiting Nurses and Hospice of San Francisco, 65, 67, 76, 78, 81, 85. See also Hospice of San Francisco
• Volberding, Paul, 12, 14, 17, 38, 70, 83, 96, 98, 105, 120, 130, 151
• volunteers, volunteering, 28, 35, 73-74, 75, 118, 124, 126, 130, 153, 154, 158
• Ward-5B/5A (AIDS inpatient unit at San Francisco General Hospital), 38, 80, 83, 153
• Ward 86 (AIDS clinic at SFGH), 80, 83, 84
• Wofsy, Connie, 12, 14
• Wolfred, Tim, 80
• women
  • in AIDS care/activism, 4, 24, 25, 37
• World AIDS Day, 44
• World Health Organization (WHO), 4, 44
• Yale University, 59, 60, 65
  • New Haven Hospital, 54, 56
  • School of Medicine, 54
  • University School of Epidemiology and Public Health, 53, 64
• Ziegler, John L., 95

CV: Sally Smith Hughes

Graduated from the University of California, Berkeley, in 1963 with an A.B. degree in zoology, and from the University of California, San Francisco, in 1966 with an M.A. degree in anatomy. After completing a dissertation on the history of the concept of the virus, she received a Ph.D. degree in the history of medicine from the Royal Postgraduate Medical School, University of London, in 1972.

Postgraduate Research Histologist, the Cardiovascular Research Institute, University of California, San Francisco, 1966-1969; medical historian conducting the NEH-supported History of Medical Physics Project for the History of Science and Technology Program, The Bancroft Library, 1978-1980.

Presently Assistant Research Historian in the Department of History of Health Sciences, University of California, San Francisco, and an interviewer on medical and scientific topics for the Regional Oral History Office. The author of The Virus: A History of the Concept, she is currently interviewing in the fields of health maintenance organizations, virology, public health, ophthalmology, and molecular biology/biotechnology.

About this text
Courtesy of Regional Oral History Office, University of California, Berkeley
http://content.cdlib.org/view?docId=kt0j49n68p&brand=calisphere
Title: The AIDS Epidemic in San Francisco: The Response of the Nursing Profession, 1981-1984, Vol. I
By:  Sally Smith Hughes
Date: 1995 and 1996
Contributing Institution: Regional Oral History Office, University of California, Berkeley
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