By Christmas, Bill was having a hard time keeping food down and suffering from oppressive diarrhea. He weighed 120 pounds. Headaches pounded his brain like heavy wooden mallets. He resisted friends’ urgings that he go to the hospital, insisting that he was suffering from only a touch of stomach flu that would surely pass. His friends had been meeting in the kitchen this cold Sunday afternoon, trying to figure out what to do, when they heard the thud from Bill’s bedroom.
Catherine noted that Bill had lost his continence. He had obviously had some sort of seizure, but still it took substantial goading to get him to agree to go to a hospital.
Dr. Marcus Conant quickly ordered a bed for him at the UCSF Medical Center. When it was time to leave, Bill refused to let anyone help him walk. Slowly, he pulled himself from the floor, stood, threw his chest out and started down the stairs.
Outside, in the bitter winter chill, Bill could see his breath. He pulled his coat tightly around him as he left his flat for this last trip out of the Castro neighborhood.
His friends agreed to take shifts and spend twenty-four hours a day with him. Bill’s one great love, Kico Govantes, was a frequent hospital visitor. He was now a successful artist, but he remained the emotional foil to Bill’s cerebral demeanor, and Bill’s friends were afraid he would be too sensitive to man the all-night vigils. Dennis and Harry Britt scheduled themselves for the night shifts, and the anxious waiting began.
Late that first night, as Dennis Seely stretched out on the floor of the hospital room, Bill was speaking normally again.
“Once you guys got power over me, you became fascists,” Bill said.
“What are you talking about?”
“I wanted my glasses and you wouldn’t give them to me.”
“Bill, we couldn’t understand what you were saying,” Dennis said. “You weren’t speaking English.”
“Oh,” said Bill.
He hadn’t remembered that.
The next day, doctors administered a battery of neurological tests. Bill was lucid about half the time, though it appeared he had lost some use of his cranial nerves. He was seeing double.
“Who is the president?” a doctor asked, trying to judge Bill’s presence of mind.
“Kennedy,” Bill said.
The doctor looked worried. “I think it’s Reagan,” he said.
“Please, don’t remind me!” Bill groaned. “I’m sick enough already. Don’t make it any worse.”
The diagnosis: cryptococcal meningitis. Any brain disease was serious, but treatments for cryptococcosis were available, the doctors said, and there was no reason to believe that Bill wouldn’t pull through. Nevertheless, Bill was in despair over the determination. More than anything else, he was terrified by the thought that the disease might turn on his brain. His intelligence meant more to him than any other quality.
“Are you afraid of dying?” Bill’s brother Mike asked.
“I’m more afraid of what happens if I live,” Bill said.
The unseasonably cold weather persisted all week. Sharon Johnson was sitting with Bill on Saturday afternoon when he dozed off. After the previous days’ fitfulness, Sharon was relieved to see some serenity return to Bill’s face as he slept. He seemed to have made some sort of decision. As Sharon watched him, she remembered where she had seen that expression on Bill before. It had been in Lourdes nearly a year earlier, when Bill had sat transfixed for all those hours on a stone bench in front of the statue of the Virgin Mary. She had never seen Bill so at peace before, and she had not seen him so tranquil since, not until now.
Later, Dennis Seely came to spend the night on the hospital floor. Bill’s friends had insisted that the nurses stop coming into the room in the middle of the night to take his temperature. He was never getting a decent night’s sleep, they argued, and the nurses finally agreed.
So it was not until 6 A.M. that Dennis woke up, when the nurse came in the next morning.
“don’t wake him,” Dennis said.
“I’ve got to take his temperature,” she insisted.
Dennis sat up and stretched, feeling rested. Of all the nights he had spent in Bill’s room, it was the first time Bill’s loud snoring hadn’t kept him up.
Though it was still dark, Dennis could make out the form of the nurse putting the thermometer in Bill’s mouth.
Then there was the sound of glass clicking against Bill’s teeth as the thermometer fell from his gaping jaw.
“William?” the nurse said. “William?”
“Call him Bill,” Dennis said, getting up.
“Bill?”
Dennis walked to the bedside and saw Bill lying motionless, his head tilted so that his curly brown hair lay limp on the pillow.
“I think he’s dead,” Dennis said.
The nurse was pretty and blond, and as she looked down on her patient, a tone of amazement crept into her voice.
“I’m new,” she said. “I’ve never had anyone die before.”
The sheets were tucked neatly around Bill’s chin. There had been no final struggle, only a last quiet breath in the night.
“Now I can see,” the nurse said softly. “He’s dead, but that really isn’t him, is it?”
The nurse regarded Bill’s motionless form, not morbidly but with a genuine fascination, as if she just then were reaching some conclusion about life, about death.
“Oh, I know that’s him,” she said, a little flustered.
“But that’s not him,” she said. “He’s not really dead.”
NOTES ON SOURCES
This book is a work of journalism. There has been no fictionalization. For purposes of narrative flow, I reconstruct scenes, recount conversations and occasionally attribute observations to people with such phrases as “he thought” or “she felt.” Such references are drawn from either the research interviews I conducted for the book or from research conducted during my years of covering the AIDS epidemic for the San Francisco Chronicle.
Many of the people who play a key role in this book had been sources for many years before the AIDS epidemic appeared. My interviews with Drs. Selma Dritz, Dan William, and David Ostrow, for example, go back to 1976 when I was a reporter for a gay newsmagazine writing about health issues. Similarly, a number of the San Francisco political figures and gay community leaders in the book were also people whom I had interviewed dozens of times in the past decade, both as a television reporter and as the author of a book on San Francisco politics. For purposes of convenience, however, the following notes list only interviews relating to aspects of the AIDS epidemic that are covered within this book. This is not a record of every interview I conducted concerning AIDS in the past five years. Such a list would include more than 900 people.
The interview dates after the names refer both to telephone and personal interviews. In months where I conducted more than one interview with a given source, the number of interviews is indicated in parentheses after the date.
In this particular book, where chronology played such an essential part, I was aided by the fact that scientists routinely keep journals noting specific dates of insights and conversations with other researchers. Medical charts and death certificates also helped provide detail on the AIDS sufferers profiled in the book. Other essential documents and sources are noted when appropriate.
Washington Politics
Congress: Rep. Henry Waxman 7/85, 2/86; Rep. Barbara Boxer 12/83; Rep. Sala Burton 11/84; Michael Housh, aide to Rep. Boxer 2/85, 1/86, 3/86; Susan Steinmetz, staff, Intergovernmental and Human Resources Subcommittee, 2/85, 10/86; Bill Kraus, aide to Reps. Phil & Safe Burton 10/82, 3/83 (3), 4/83, 5/83, 6/83, 10/83, 11/83, 12/83 (2), 1/84, 2/84 (4), 3/84, 4/84, 10/84, 11/84, 6/85, 7/85, 9/85, 10/85 (6), 11/85; Tim Westmoreland, counsel, House Subcommittee on Health and the Environment 2/85, 11/85, 2/86, 6/87; Larry Miike, Office of Technology Assessment 2/86; David Sundwald, counsel, Senate Committee for Labor and Human Resources 2/86; Dan Maldonado, counsel, House Appropriations Subcommittee for Health 2/86; Rep. Ted Weiss
12/83.
Reagan Administration: Dr. Edward Brandt, Assistant Secretary for Health 12/83, 2/85; Surgeon General C. Everett Koop 3/87; Dr. Lowell Harmison, Deputy Assistant Secretary for Health 2/85; Dr. Anthony Fauci, dir. NIAID, 2/85, 9/85, 2/86; Dr. Richard Krause, dir. NIAID 2/86; Dr. James Whites-carver, asst. to dir. NIAID 2/86; Peter Fischinger, asst. dir. National Cancer Institute 2/85; Dr. James Mason, dir. CDC & acting Asst. Sec’y for Health 2/86; Dr. Don Hopkins, asst. dir. CDC 2/86; Dr. Walter Dowdle, director, Center for Infectious Diseases 4/84; Bill Grigg, spokesman, FDA 2/85.
Internal governmental memoranda were obtained under provisions of the Freedom of Information Act. Requests were made in 1983 to Office of Management and Budget, Department of Health & Human Services, Centers for Disease Control, and National Institutes of Health. Requests were made again in 1985 to the same agencies and to the U.S. Department of Defense and U.S. Department of Justice. Further documentation for federal funding decisions came from the “Review of the Public Health Service Response to AIDS” by the Office of Technology Assessment (1985) and from “The Federal Response to AIDS,” a report by the Intergovernmental Relations and Human Resources Subcommittee of the House of Representatives Committee on Government Operations (1983).
AIDS Researchers and Physicians
New York: Dr. Mathilde Krim, AIDS Medical Foundation & Memorial Sloan-Kettering Cancer Center 2/85, 1/86; Dr. Arye Rubinstein, Albert Einstein College of Medicine 2/85, 2/86; Dr. Joyce Wallace, St. Vincent’s Hospital 2/85; Dr. Michael Lange, St. Luke’s-Roosevelt Hospital 2/85, 2/86; Dr. Dan William 1/86, 6/87; Dr. Alvin Friedman-Kien, NYU Hospital 1/86; Dr. Linda Laubenstein 1/86, 6/87; Dr. Larry Mass 1/86; Virginia Lehman, Bellevue Hospital 2/86; Dr. Donna Mildvan, Beth Israel Medical Center 2/86; Dr. Stuart Nicholls 2/86.
The account of the February 1985 AIDS conference sponsored by AIDS Medical Foundation was taken from a videotaped recording of the conference provided by American Foundation for AIDS Research. The name of the AIDS-stricken child at Jacobi Hospital was changed to Diana to protect her confidentiality; this was the only name alteration in the book.
San Francisco: Dr. Marcus Conant, University of California at San Francisco 4/82, 4/83, 10/83, 2/84, 3/84, 6/84, 8/84, 10/84, 11/84, 12/84, 3/S5, 4/85, 8/85, 10/85, 12/85, 1/86, 7/86, 9/86 (2), 10/86; Dr. Paul Volberding, dir. San Francisco General Hospital AIDS Clinic 3/84, 8/84, 1/85, 2/85, 1/86, 2/86, 3/86, 12/86, 6/87; Dr. Constance Wofsy, assoc. dir. SFGH AIDS Clinic 5/83, 1/85; Dr. Donald Abrams, asst. dir. SFGH AIDS Clinic 10/83, 2/85, 5/85, 7/85, 8/85, 9/85, 10/85, 1/86, 1/87; Dr. Andrew Moss, epidemiologist, SFGH AIDS Clinic 3/83, 7/83, 2/84, 7/84, 11/84, 3/85; Dr. Jay Levy, UCSF Center for Human Tumor Virus Research 8/84, 3/85, 7/86; Dr. Mort Cowan, UCSF 7/86; Dr. Michael Gorman, epidemiologist 3/83; Dr. James Groundwater, dermatologist 11/83, 1/86, 2/86; Dr. Robert Bolan 3/83, 5/86; Peter Arno, UCSF Institute of Health Policy Studies 8/85; Dr. Edward Shaw, polio expert 10/85; Dr. Warren Winkelstein, professor of epidemiology, UC Berkeley 10/83, 11/84, 10/85, 5/87; David Lyman, San Francisco’s Men’s Study 8/84; Cliff Morrison, AIDS Coordinator, SFGH 10/83, 1/84, 3/84, 11/84, 5/86; Bill Barrick, RN, SFGH AIDS Ward 10/83; Cathy Juristo, RN, SFGH AIDS Ward 10/83; Bill Nelson, RN, SFGH AIDS Ward 11/84; Alyson Moed, RN, SFGH AIDS Ward 11/84; Paul O’Malley, SF City Clinic hepatitis study 3/86; John S. James, editor, AIDS Treatment News 3/87; Dr. Samuel Stegman, dermatologist 4/83; Dr. Arthur Ammann, UCSF 8/83; Dr. Dan Stites, UCSF 8/83; Dr. Cornelius Hopper, special asst. to UC pres. 8/83; Dr. Rudi Schmid, dean of UCSF school of medicine 8/83; Dr. James Wiley, SF Men’s Study 10/84.
Centers for Disease Control, Atlanta: Dr. Don Francis, laboratory coordinator, AIDS Task Force 8/85, 10/85 (4), 11/85 (2), 1/86, 5/86; Dr. James Curran, dir. AIDS Task Force 6/83, 10/83, 12/83, 2/84, 4/84, 8/84, 12/84, 2/85, 4/85, 4/86, 2/87; Dr. V.S. Kalyanaraman 4/86; Dr. Bruce Evatt 3/86, 4/86; Don Berreth 4/84; Bill Darrow 4/86, 2/87; Dr. Harold Jaffe 4/82, 4/84, 11/84, 2/85, 2/86; Dr. Mary Guinan 4/84, 4/86; Dr. Dale Lawrence 4/86 (2), 2/87; Ward Cates 4/86; Dr. Paul Weisner 4/86; Dr. James Allen 2/85, 4/86, 2/87; Dr. Meade Morgan 1/86; Dr. Richard Selik 3/83, 12/83; Sandra Ford 4/84; Mary Cumberland 4/84; Dr. Thomas Spira 4/84; David Cross 4/84; Dr. Russ Havlak, Center for Prevention Services 1/86.
National Institutes of Health, Bethesda: Dr. Bill Blattner, NCI 2/86; Dr. Samuel Broder, clinical dir. NCI 2/86; Dr. James Goedert, NCI 2/86; Dr. Robert Biggar, NCI 2/86; Dr. Harry Haverkos, NIAID (previously with CDC) 3/84, 2/86; Dr. Robert Gallo, NCI Division of Tumor Cell Biology 4/86.
Los Angeles: Dr. Joel Weisman 3/86; Dr. Michael Gottlieb, UCLA 3/86, 9/86; Dr. David Auerbach UCLA 3/86; Dr. Wayne Shandera 5/86.
Miami: Drs. Mark Whiteside and Caroline MacLeod, Miami Institute of Tropical Medicine 4/85.
Paris: Dr. Luc Montagnier, Pasteur Institute 9/84, 12/85; Dr. Jean-Claude Chermann, Pasteur 9/84, 2/85, 6/87; Dr. Willy Rozenbaum, Pitie-Salpetriere Hospital 9/84, 12/85, 6/87; Dr. Francoise Brun-Vezinet, Claude-Bernard Hospital & Pasteur 12/85; Dr. Francoise Barre, Pasteur 12/85; Dr. Jacques Leibowitch, Rene Descartes University 9/84, 12/85; Dr. David Klatzmann, Pitie-Salpetriere & Pasteur 12/85; Dr. Jean-Baptiste Brunet, World Health Organization 12/85; Michael Pollack, sociologist 12/85; Dr. Didier Seux, Pitie-Salpetriere 12/85.
Brussels: Dr. Nathan Clumeck, University of Brussels 11/85.
Kinshasa, Zaire: Dr. Z. Lurhama, Clinique Universitaires 11/85.
Boston: Dr. Myron Essex, Harvard School of Public Health 2/86.
Chicago: Dr. David Ostrow 10/83, 4/85, 11/85.
Copenhagen: Dr. Bo Hoffman, Rigshospitalet 12/85; Dr. Viggo Faber, Rigshospitalet 12/85; Dr. Ib Bygbjerg, Rigshospitalet 12/85; Dr. Jan Gerstof, State Serum Institute 12/85. Other friends of Dr. Grethe Rask were interviewed, though they asked not to be identified.
City, County, and State Officials
New York City: Dr. David Sencer, Commissioner of Health 2/85; Kevin Cahill, NYC Board of Health 2/85; Mel Rosen, director New York State AIDS Institute 2/85, 2/86.
San Francisco: Mayor Dianne Feinstein 10/82, 5/83, 10/83, 3/84, 4/84, 5/84, 6/84; Dr. Mervyn Silverman, director, Department of Public Health 5/83, 6/83, 10/83, 1/84, 2/84. 3/84, 5/84, 6/84, 10/84, 11/84, 1/85, 2/85, 3/85, 4/85, 8/85, 3/86, 6/87; Dr. Selma Dritz, asst. dir. SF DPH Bureau of Communicable Disease Control 4/82, 3/83, 4/83, 5/83, 6/83, 7/83, 10/83, 11/83, 2/84, 1/86; Bill Cunningham, AIDS coordinator 9/83; William Petty, health inspector 10/84; City Attorney George Agnost 3/84; Deputy City Attorney Victoria Hobel 11/83; Deputy City Attorney Phil Ward 10/84; Dr. Dean Echenberg, dir. Bureau of Communicable Disease Control 7/84, 8/84, 11/84, 3/85, 4/85, 8/85; Board of Supervisors President Wendy Nelder 6/83, 9/83, 5/84, 10/84; Supervisor Richard Hongisto 3/84; Supervisor Bill Maher 9/83; Supervisor Harry Britt 6/83, 9/83, 2/84, 5/84, 6/84, 10/84; Supervisor Carol Ruth Silver 6/83; Dr. Steve Morin, CA DHS AIDS Task Force 1/84, 2/84, 6/85; Bruce Decker, CA AIDS Advisory Committee 9/85, 8/86; Dana Van Gorder, aide to Supervisor Harry Britt 3/83, 5/83, 6/83, 8/83, 9/83, 11/83, 2/84, 3/84, 4/84, 5/84, 6/84, 8/84, 12/84, 7/86; Assembly Speaker Willie Brown 8/83; Assemblyman Art Agnos 3/85, 4/85, 6/86, 7/86; Dr. Robert Benjamin, Alameda County Bureau of Comm. Diseases 8/85.
Sacramento: Dr. Ken Kizer, dir., Calif. Dept. of Health Services 3/85, 7/85, 7/86, 2/87; Dr. James Chin, dir. infectious diseases, Calif. Dept. of Health Services 8/85; Dr. Robert Anderson, Calif. DHS Office of AIDS 11/84, 6/86, 7/86, 5/87; Stan Hadden, aide to Sen. Pres. David Roberti 8/86.
The Gay Community, People With AIDS, AIDS Service Organizations and Related Interviews
Los Angeles: James Kepner, AIDS History Project, International Gay & Lesbian Archives 3/86; John Mortimer, AIDS Project Los Angeles 9/86; Paul Van Ness, exec. dir. APLA 9/86; Bill Meisenheimer, exec. dir. APLA 9/85.
New York City: Virginia Apuzzo, dir. National Lesbian/Gay Task Force 1/86; Charles Ortleb, publisher, New York Native 2/85, 2/86; Rodger McFarlane, executive director Gay Men’s Health Crisis 8/84, 2/85, 2/86; Larry Kramer, organizer GMHC 2/85, 1/86 (3), 4/86; Paul Popham, pres. GMHC 2/86, 4/86; Enno Poersch, GMHC boa
rd member 4/86; Richard Dunne, exec. dir. GMHC 2/86, 5/86; David Nimmons 2/86; Terry Biern, American Foundation for AIDS Research 2/85, 2/86; Jeff Richardson 2/85, 2/86; Dr. Stephen Caiazza, pres. NY Physicians for Human Rights, 2/85, 10/85, 1/86.
San Francisco: Cleve Jones 8/82, 10/82, 3/83 (2), 5/83, 3/84, 4/84 (2), 12/84, 9/85, 1/86, 6/86; Catherine Cusic, Harvey Milk Gay Democratic Club 6/83, 6/85, 12/85; Jack McCarty and Victor Amburgy, hostages 7/85; Gary Walsh, PWA, 5/83, 6/83, 7/83, 8/83, 12/83, 1/84; Rick and Angie Walsh, 10/85; Lu Chaikin, 9/85, 10/85 (2); Matt Krieger 5/83, 9/86, 11/86; Joseph Brewer, 11/84, 10/85 (2), 11/85; Larry Bush, journalist and aide to Assemblyman Art Agnos 4/84, 10/84, 11/84, 1/85, 2/85, 3/85, 6/85, 7/85; Paul Lorch, editor, Bay Area Reporter 4/84; Konstantin Berlandt 5/83, 6/84; Allen White, Bay Area Reporter 7/84; Pat Norman 3/83, 6/86, 7/86, 8/86; Sharon Johnson 1/87; Dennis Seely 1/87; Bill Jones, proprietor, Sutro Bathhouse 6/83, 6/84; Randy Stallings, pres. Alice B. Toklas Democratic Club 3/83; Martin Cox, People With AIDS 5/83, 10/83, 11/83, 10/84; Paul Castro, PWA 6/83; Bob White, PWA in Paris for HPA-23 9/85, 11/85; Wayne Friday, pres. Tavern Guild 6/83, 12/86; Andrew Small, PWA 6/83; Lawrence Wilson, Alice B. Toklas Democratic Club 6/83; Russ Alley, businessman 6/83; Silvana Strangis 1/85; Anthony Ford 1/85; Louis Gaspar, proprietor, Hothouse 7/83; Steve Folstad, exec. dir. Pacific Center for Human Growth 4/83; Leon McKusick, psychologist 4/83, 10/83, 2/84; Karl Stewart, leather columnist Bay Area Reporter 4/83; Mark Feldman, PWA 5/83; Hal Slate, proprietor, The Cauldron 5/83; Gloria Rodriguez, PWA mother 10/83; Gary Ebert, Shanti volunteer 11/84; Bob Owen, proprietor, Academy sex club 10/84; Roberta Achtenberg, Lesbian Rights Project 10/84; John Wahl, Committee to Preserve Our Sexual & Civil Liberties 1/85; Deotis McMather, PWA 10/83; Bruce Schneider 10/83; Nick DiLorea, PWA 10/83; Dale Bentley, proprietor, Club Baths 3/84; Bill Morse, Animals sex club 6/84; Ron Huberman, Harvey Milk Gay Demo Club 11/86; Wayne Friday, Bay Area Reporter 11/86; Gwenn Craig, Harvey Milk Gay Democratic Club 12/86; Dick Pabich 11/86; Ken Maley 12/86; Larry Littlejohn 3/84, 4/84, 12/86; Jocelynn Nielsen 1/87; Carole Migden, pres. Harvey Milk Gay Demo. Club 4/84, 11/86; Sal Accardi, Northern California Bathhouse Owner Assn. 3/84, 5/84; Jim Foster, former pres. Alice B. Toklas Demo. Club, 2/85; Mike Kraus 1/86, 3/86; Mary Kraus Whitesell 1/86; John Graham & Larry Benson, friends of Ken Home 2/86; Enrique Govantes 3/86; Bobbi Campbell 4/82; Ron Carey 4/82; Tom Simpson, Lambda Funeral Guild, 3/85; Dean Sandmire, Mobilization Against AIDS 9/85; Sam Puckett, SF AIDS Foundation 6/84; Larry Bye, Research & Decisions, Corp. 10/84; Tristano Palermo, social services dir. SF AIDS Foundation 11/84, 1/85; Ed Power, projects dir. SF AIDS Foundation 5/83, 10/83; Jim Geary, exec. dir. Shanti Project 4/82; Sam Pichotto, Operation Concern 10/83. Richard Rector, SF People With AIDS 10/85; Dan Turner, People With AIDS 6/83, 1/86; Kenn Purnell, KS Foundation 2/86; Op. cit. Kraus.