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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 Community Physicians, 1981-1984, Volume I, an oral history conducted in 1996, Regional Oral History Office, The Bancroft Library, University of California, Berkeley, 2000.

To cite an individual interview: [ex.] Richard Lee Andrews, "Psychiatrist and Advocate for Gay Medical Causes in the Early AIDS Epidemic" an oral history conducted in 1995 and 1996 by Sally Smith Hughes in The AIDS Epidemic in San Francisco: The Response of Community Physicians, 1981-1984, Volume I, Regional Oral History Office, The Bancroft Library, University of California, Berkeley, 2000.

Cataloging Information

THE AIDS EPIDEMIC IN SAN FRANCISCO: THE RESPONSE OF THE COMMUNITY PHYSICIANS, 1981-1984, Volume I, 2000, xv, 215 pp.

Richard Lee Andrews, M.D. (b.1947) psychiatrist: "coming out" and gay activism in San Francisco before AIDS; Harvey Milk; formation of BAPHR [Bay Area Physicians for Human Rights]; BAPHR response to early AIDS crisis, Kaposi's sarcoma brochure, advice regarding antibody testing, early safe sex guidelines, attempts to change gay sexual behavior; BAPHR and the bathhouse crisis; Mervyn Silverman, Will Warner and the Larry Littlejohn Initiative; BAPHR links to other AIDS and gay organizations; creation of the red ribbon as the AIDS symbol.

James M. Campbell, 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.

James R. Groundwater, M.D. (b. 1937) dermatologist: medical education and move to San Francisco; first Kaposi's sarcoma case and diagnosis; Marcus Conant; diagnosing early opportunistic infections, Kaposi's sarcoma and pneumocystis pneumonia; early KS pamphlet and AIDS treatment guidelines; current involvement with AIDS medicine.

Introduction by Donald I. Abrams, M.D.

Interviewed 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

Donald I. Abrams, M.D.

First, transport yourself back in time to the late 1970s, early 1980s, when solo medical practitioners were the norm in the San Francisco Bay Area. Community physicians, practicing alone in their private practices, were the first to encounter patients with the unusual purple lesion or the rapidly progressive pneumonia. Many of these providers had much in common with their patients--their age, their socioeconomic status, and their sexuality. Even before the establishment of the AIDS clinics at the university facilities, the community physicians were on the front lines as the epidemic erupted. They were truly community providers not only in the contrast to the academicians, but also often as members of the community that was about to become decimated by the ravages of the terrifying new disease. Has such a situation ever before been encountered in the history of medicine?

Recall as well the history of the "Gay Liberation" movement in the United States. In the late seventies, homosexual men and women were just becoming comfortable with emergence from their closets, enjoying an openness and sense of empowerment that accompanied the newfound freedom and acceptance. Nascent organizations of lesbian, gay, and bisexual physicians were being established, initially with the founding of the Bay Area Physicians for Human Rights [BAPHR] in 1977, followed by the national American Association of Physicians for Human Rights [AAPHR (now the Gay and Lesbian Medical Association--GLMA)] in 1981. In fact, it was at a BAPHR meeting of gay physicians from around the country being held in San Francisco in June 1981 that it became evident that these unusual cases of Kaposi's sarcoma and Pneumocystis carinii pneumonia were more than freak isolated occurrences. These organizations served as early foci for information dissemination and educational efforts to alert colleagues and government health officials about the new disease. BAPHR and AAPHR meetings became informal support groups in a way, providing community physicians with a safe haven to share the sense of fear, frustration, and loss that accompanied caring for their earliest AIDS patients, even before the disease was named or the cause was discovered.

Despite an attempt to centralize care of AIDS patients at a center of excellence at San Francisco General Hospital [SFGH], community physicians maintained a desire to care for their patients in their own practices. After all, it was a brand new disease. It is not as if there were a fountain of information on how to treat it that only flowed at SFGH. Although most of the earliest clinical trials evaluating immune modulators and later antiretrovirals were occurring at the General, providers chose to maintain their primary caregiver role. They were undaunted by the novelty of the disease. They were unhampered by the lack of specialty training since there was no such thing as an AIDS fellowship and we were all pioneers, out on the edge of medical history. Plus these men and women were bound to their patients in a unique way. Many of the community doctors had established gay medical practices, focussing their attention on the health needs of gay men. Prior to AIDS, in a young, sexually active population, sexually transmitted disease was the worst of the worries. They expected to establish their general practices and follow their patients through their maturity until old age and death. None of these young practitioners could anticipate the enormous premature loss that they would experience over the ensuing decade, presiding helplessly over the wholesale eradication of their community. Loss of a whole generation of young, intelligent, capable, productive men--like a war without guns. Has such a situation ever before been encountered in the history of medicine?

Read now the stories of some of the generals on the front line in this war. Although not himself a member of the gay community, Jim Groundwater was a favorite dermatologist in private practice for BAPHR physicians to consult. He likely saw the city's first case of Kaposi's sarcoma. Bob Bolan, Jim Campbell, Bill Owen, and Ric Andrews were providers on the front lines, tending to both the medical and psychiatric needs of the community under siege. Stephen Follansbee, completing his infectious disease fellowship just as the initial cases of Pneumocystis carinii pneumonia were diagnosed, became one of the first of the new breed of AIDSologists, his entire early career devoted essentially to the treatment and investigation of the new disease. Another investigator involved in attempting to crack the code from the perspective of the epidemiologist was Paul O'Malley, searching for clues in stored serum specimens and serial follow-up of a cohort of gay men who had been enrolled in a local hepatitis B vaccine trial in the late 1970s. All of these individuals made significant, too often unsung, contributions in the very early days of the epidemic and have for the most part continued on the same course to the present day.

In 1985, Mayor Dianne Feinstein asked Paul Volberding, the director of the AIDS program at San Francisco General Hospital, to establish a line of communication with the community providers caring for patients with AIDS in the Bay Area. The first meeting of the dozen or so providers was held in March at the San Francisco Medical Society. Seeing that many of those in attendance were from the gay community, Paul came to me and suggested that perhaps I should continue the dialogue with these physicians, many of whom he knew to be my friends from BAPHR. Links to my BAPHR colleagues had previously proven very valuable during my oncology fellowship when I established in 1981 a cohort of men with persistent generalized lymphadenopathy to follow prospectively in a natural history cohort. Many of the subjects referred for evaluation were sent by the doctors whose stories follow.

It was my pleasure to preside at the next meeting of the community physicians' group, which was initially formed for a number of reasons. Information exchange was essential in these early days of emerging therapies. As well, we at the SFGH facility saw this meeting as a way to inform the community providers about ongoing research protocols to which they could refer their patients. As the group was a coming together of community physicians and those from the county hospital, County Community Consortium seemed an appropriate moniker. (In time the acronym CCC could never be correctly decoded by those who tried to use the organization's full name, so it was shortened to Community Consortium.)

Within the first year of meeting, it became clear that County Community Consortium providers were interested in taking a more active role in learning how best to care for their patients with the new disease. If memory serves me right, I believe it was Jim Campbell who raised his hand at a meeting and said, "You know, instead of sending all of our patients to SFGH to participate in clinical trials, there are questions we can answer in our own offices." That observation led to the development of a consensus protocol on how to prevent a second episode of Pneumocystis carinii pneumonia [PCP] in patients who had already experienced a first episode. Each provider had their own favorite regimen. Some offered no prophylaxis. Rather than depend on anecdote, we worked to develop a randomized clinical trial that was launched in July 1986 as perhaps the first community-based clinical trial in HIV disease. Soon after its inauguration, the trial was thwarted by the release of the first antiretoviral agent--AZT--because the first patients to receive the product were cautioned not to take any other non-essential medications by mouth. Since patients with a prior episode of PCP now had access to a potentially life-extending antiviral agent, interest in oral prophylaxis against a treatable pneumonia waned.

Undaunted, Consortium physician/investigators next designed a study to investigate PCP prophylaxis using the inhaled pentamidine therapy which had been developed by a UCSF/SFGH pulmonologist. Working together on the inhaled pentamidine protocol, town and gown investigators collaborated in a manner that would become a model for future productivity and success in conducting clinical trials in the sites where patients received their primary care. Ultimately the Consortium's aerosolized pentamidine trial would lead to FDA approval of the modality as the first prophylaxis for an HIV-related opportunistic infection as well as a lead article in the New England Journal of Medicine. It was clear that significant research could be done outside of the hallowed hallways of academic teaching hospitals. This Consortium achievement became a model for community-based clinical trials programs later established by both the American Foundation for AIDS Research and the National Institute of Allergy and Infectious Diseases.

Much of the success of the Community Consortium and even the larger San Francisco Model of HIV care can be traced to the efforts of the physicians whose stories follow. No such collaborative coming together of the community was seen in other areas hard hit by the epidemic. New York and Los Angeles did not pull together the way the community did in the Bay Area. It can be attributed as well to the collaborative congeniality fostered by BAPHR, allowing its member physicians to strike out united against the common enemy--the disease--and not against each other.

I myself owe much of my professional as well as personal growth to my colleagues you are about to meet. Serving as brave, openly gay role models for a young junior faculty academic, initially fearful of coming-out to avoid derailing my career, the examples of these noble, proud and successful professionals inspired my ensuing openness. I write this today with pride as the current president of the Gay and Lesbian Medical Association. Through two decades of battle, these brave warriors on the front line of the fight have unique stories to tell of a struggle to save their community from a plague that often brought as much political as medical despair. Although the battle is neither won nor over, the contributions of the community physicians have done much to enrich the lives of their patients, the medical profession and society-at-large. Has such a situation ever before been encountered in the history of medicine?

San Francisco, California

Series History

Sally Smith Hughes, Ph.D.

Project Origin and Organization

This series with community physicians is the third phase of an oral history project documenting the medical response of the medical and nursing professions in the early years of the AIDS epidemic in San Francisco. Please see the earlier volumes for descriptions of the particulars of these two previous interview phases.

Phase one and two with university physicians and nurses has effectively, albeit selectively, documented the role of academics in the epidemic, the "gown" component of the traditional town and gown division of medicine worldwide. What was obviously missing were accounts by representatives of the "town," that is, physicians with private practices in a variety of medical specialties relating to AIDS. In 1995, UCSF Library, represented by Karen Butter, now Acting Director, came to the rescue with a grant to the Regional Oral History Office to conduct interviews with community physicians whose practices included substantial numbers of AIDS patients early in the San Francisco epidemic. The grant was sufficient to cover two- to six-hour interviews with seven individuals--six physicians and one professional in the San Francisco Health Department--selected because of their substantial participation in the early medical response to the epidemic. In 1996, interviews were recorded in the San Francisco offices of the participants. The only exception were the interviews with Dr. Robert Bolan, which took place in Glendale in southern California, his new home after a recent career move.

Primary and Secondary Sources

The interviews were largely based on the reading I had done to prepare for the first two phases of the project, and even more substantially by the information I had acquired in the course of these interviews. The most significant new source for phase three was documentation concerning Bay Area Physicians for Human Rights [BAPHR], a gay physicians' organization founded in San Francisco in the late 1970s. An extensive series of "The BAPHRON," BAPHR's informative monthly newsletter, and documents in BAPHR's office in the Castro District of San Francisco were rich sources of information on the response of gay physicians and the gay community to the epidemic.

Selected Themes

BAPHR has a large voice in the present series. Five of the seven interviewees were at one time or another members of BAPHR and spoke at length of the organization's contributions. Only James Groundwater, who is not gay, and Paul O'Malley, who is not a physician, were never members. Furthermore, BAPHR was one of the focal points of the early medical response to the new disease after it was recognized in San Francisco. Its members came to the crisis with the very intersection of experiences that the epidemic seemed to demand: medical skill in diagnosing and treating diseases prevalent in gay men, and sympathy for preserving the personal and sexual freedoms that the gay community had recently won. The vast difference for physicians confronted with previously healthy young men who were suffering and dying from AIDS was that neither cause nor treatment of the mystifying new disease was known and available. These histories recount over and over, but from diverse perspectives, the ways in which physicians responded professionally and personally to the increasing stream of very ill patients with puzzling symptoms and psychological as well as physical problems. They also trace physicians' gradual awareness of the severity, extent, and complexity of the new epidemic, focused initially so frighteningly on gay men. Some of the interviewees also tell of learning to manage the "worried well" who came to their physicians with fears of acquiring or transmitting the new syndrome.

Aside from providing a portrait of AIDS medicine as practiced in private medical offices in the years before AZT and protease inhibitors were available, these interviews describe from a variety of perspectives, the interviewees' responses to major events and crises of the epidemic in the early 1980s. A pervasive theme is the formulation of safer sex guidelines. Bob Bolan particularly, but others as well, were preoccupied with the formulation of guidelines which would simultaneously reduce disease transmission and honor the community's arduous battle for freedom of sexual expression. The accounts are sometimes explicit about sexual practices and attitudes, showing how those active in the epidemic brought taboo issues out of the closet and onto the public stage. In fact, these oral histories suggest that one lasting effect of the AIDS epidemic may be to have made safer sex practices and healthy sexual expression an open topic of discussion in many sectors of American society. The histories offer an intriguing range of viewpoints on this issue in gay politics.

The interviewees also provide accounts of important events in the years closely preceding and following the recognition of AIDS in San Francisco--the deaths of San Francisco Mayor George Moscone and Supervisor Harvey Milk (the latter the first openly gay elected official in the country), the hepatitis B vaccine trials, the crisis over bathhouse closure in San Francisco, controversy over blood donation policy, fears regarding the AIDS antibody test, and so on. Most of these events highlight the intersection of medicine, sexual and gay politics, and human rights, as well as the strengths and fallibilities of individual human actors. The oral histories in this series are rife with colorful examples in all these regards. Readers may be interested to compare these accounts with those of the university physicians and nurses interviewed for this project.

These comments only begin to tap the range of topics and insights embedded in all three phases of this project. My hope is that these interviews, over thirty in all, will provide a basis for ongoing documentation of the epidemic. Victoria Harden and colleagues at the National Institute of Health Historical Office have recorded the contributions of researchers at NIH and Ronald Bayer and Gerald Oppenheimer at Brooklyn College have interviewed physicians in various cities across the United States. But there is a great need to expand documentation in time and geography. To my knowledge, there is no systematic and sustained work on the history of AIDS in developing countries in which it is expanding at a terrifying rate. Neither are there indepth historical projects on specific topics, such as efforts to develop AIDS vaccines and the associated ethical and social issues. Perhaps this collection of oral histories will serve as an impetus and inspiration for others to pursue the history which remains to be recorded worldwide.

Locations of the Oral Histories

The audiotapes and bound volumes of all oral histories in the AIDS series are available for research at UCSF Library's AIDS History Project Archives. The oral histories are also available at the National Library of Medicine, the Bancroft Library, UCLA, and other research libraries. Some are available on the Internet at:

http://bancroft.berkeley.edu/ROHO/ohonline.html. The remainder are in the process of being placed online.

Acknowledgements

We are grateful to Karen Butter, Acting Director of UCSF Library, for arranging project funding. I also wish to thank Dr. Robert Bolan for giving me access to three cartons of his personal records which he then donated to the AIDS History Project at UCSF. I also wish to thank Dr. Ric Andrews for arranging access to documents in the office of Bay Area Physicians for Human Rights.

I thank editorial assistants Grace Robinson, Julia Rechter, and Celeste Newbrough, and production manager Shannon Page for their efforts in finalizing the oral histories. I am grateful as always to Willa Baum, ROHO director, for her oversight and helpful comments.

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"