And the Band Played On: Politics, People, and the AIDS Epidemic, 20th-Anniversary Edition (38 page)

The confirmation of Kaposi’s sarcoma on January 25, 1983, made Gary Walsh the 132nd San Franciscan diagnosed with Acquired Immune Deficiency Syndrome.

That same morning, Dr. Don Francis again submitted a budget request for a modest $198,301 to establish a laboratory for AIDS at the Centers for Disease Control. It was the same request Francis had made months ago, with no reply, and he had doubts as to whether the resubmission would meet a kinder fate. “It still stands as our request,” Francis wrote the assistant director for management of the Center for Infectious Diseases. “The purpose of this input would be to search for an etiologic agent by electronmicroscopy, cell culture, and serologic testing. They are badly needed if we are to be successful in this pursuit.”

January 31

S
AN
F
RANCISCO

All day, clients left Gary Walsh’s office crying. In the waiting room that Lu Chaikin shared with Gary, her clients were very impressed.

“He must be wonderful, to get people so moved,” one client told Lu.

Upstairs, Joe Brewer was in tears most of the day, even as he shepherded his clients through their increasing anxieties about the epidemic that suddenly was making the newspapers and nightly newscasts. Was it real, they wondered, or just homophobic media hype?

That night, Lu and Gary went out for a drink at Fanny’s, a popular restaurant with a small cabaret on the street level, just a few doors down from the Victorian offices the gay psychotherapists shared. While the cheerful music wafted around them, Gary talked about returning to his practice in a few months, once he was rested. Both of them knew this would probably never happen, but neither said it aloud. The fifty-seven-year-old Lu Chaikin would not deprive her friend, or even herself, of the brief comfort of denial, that first stage in accepting any terminal diagnosis.

February 1

C
ENTERS FOR
D
ISEASE
C
ONTROL
H
EPATITIS
L
ABORATORIES
, P
HOENIX

Frustration swept over Don Francis in waves. The Centers for Disease Control was behaving in an entirely reactive mode, he thought. There was no planning, no efforts at actual control of the disease, and precious little long-range vision. In his windowless office in Phoenix, he began laying out his own long-range plans for getting ahead of the epidemic.

A broader laboratory approach was necessary, even beyond the establishment of the lab he had proposed months ago. The CDC needed to hire personnel in San Francisco and New York to start collecting specimens for lab analysis. Francis also wanted an advisory group of immunologists and retrovirologists from outside the CDC. In a terse memo to Dr. Walter Dowdle, director for the Center for Infectious Diseases, Francis thrust as nimbly as he could at the dilemmas that current underfunding of AIDS research might pose.

“…Given the seriousness of the disease, I think it deserves a large commitment of resources,” Francis wrote. “Nevertheless, many important CDC studies of other diseases have already been curtailed or stopped to do AIDS work. To avoid cutting more into important existing programs, it seems wise to add now to our efforts with additional staff and funds…. The total cost of this would be between $250,000 and $300,000 a year. This may seem expensive now, in times of tight budget, but with increasing cases, increasing public and congressional pressure, I predict we will have less trouble finding funds in the future than explaining our inadequacies.”

Francis’s second memo outlined the most crucial component of his long-range plan for AIDS. Even given the mysteries of the disease, the CDC knew enough about the syndrome to start large-scale campaigns to halt its spread now, particularly among gay men, who were well-educated and far more likely to heed government warnings than other risk groups such as intravenous drug users or Haitians.

“I feel that to control AIDS we are obligated to try to do something to modify sexual activity. No doubt neither the fear of gonorrhea nor syphilis nor hepatitis B has decreased the numbers of sexual partners among homosexual men. But the fear of AIDS might. It seems mandatory for CDC to spread word of AIDS to all areas of the country. We have the network of VD clinics by which this word can be spread. Why not try?”

Why not try?

Years later, many people would ask that question.

Don Francis never received any written replies to his memoranda of February 1, 1983.

Dr. Selma Dritz at the San Francisco Public Health Department’s Bureau of Communicable Disease Control promptly reported the Kaposi’s sarcoma diagnosis of Gary Walsh to the Centers for Disease Control, where it was included among the new reported diagnoses released on Wednesday morning, February 2. It was the week that the number of AIDS cases in the United States exceeded 1,000. By this time, the nineteen-month-old epidemic had stricken 1,025 nationally, including 501 in New York State and 221 in California. At least 394 Americans were now dead from the syndrome. Nearly one in four cases had been reported to federal officials over the past two months alone; more than 100 had died in the past eight weeks. Since December, two more foreign countries had reported their first AIDS cases, putting the epidemic officially in sixteen nations worldwide.

February 7, 1983

C
APITOL
,
W
ASHINGTON,
D.C.

Mary Kraus Whitesell smiled as she stepped carefully into the office of Congressman Phil Burton on that blustering February morning. She was so proud of her son Billy she could burst. Of course, Bill had always shown an interest in politics. That could be laid to his father, Mike Kraus; Bill was so much like Mike in every way, right down to his infernal stubbornness.

Even though Bill had earned top grades and was named a National Merit Scholar in his senior year at Cincinnati’s St. Xavier High School, Mary knew he had been an unhappy child. When both sons separately moved to San Francisco and announced that they were gay, Mary wondered whether they could truly be happy in this life-style that she didn’t know much about. Mary hadn’t told many of her friends in Cincinnati that her sons were gay; they wouldn’t understand.

More recently, Mary, who had remarried, had been reading about AIDS. It made her vaguely worried, so she paid sharp attention to anything that appeared in the papers or the Cincinnati television newscasts. Bill said he was in Washington now to get more money for AIDS research. Mary noticed, however, that Bill avoided telling her much about the disease itself and what it might be doing in San Francisco.

Bill Kraus beamed when Congressman Burton hunkered through the waiting room and insisted that Mary come into his own spacious office. Burton was considered a political tiger on Capitol Hill; Bill couldn’t believe he could turn into such a teddy bear for his mom.

“I want you to know how helpful Bill has been to me—I don’t know what I’d do without him,” Burton said, smiling.

Mary could tell from the way Bill talked about the congressman that Burton had become something of a father figure to her younger son.

Bill took Mary and her husband Ernie to the Capitol dining room for lunch. Mary still couldn’t get over how proud and excited she was for Bill, who had grown so handsome and self-assured over the past few years. After so much unhappiness, he finally had made it.

Bill Kraus hadn’t realized what a mess AIDS lobbying was in until he assembled the Capitol’s half-dozen or so openly gay congressional aides with the leaders of the two national gay groups for a meeting on this snowy Monday morning. Most of the work on behalf of AIDS funding came from three people: Bill Kraus in Burton’s office; Michael Housh, another Milk Club activist who worked in the office of San Francisco’s second congressional representative, Barbara Boxer; and Tim Westmoreland in his pivotal role as the Health Subcommittee’s counsel. The seven-year-old Gay Rights National Lobby, or GRNL, had not grasped the severity of the epidemic as a congressional issue, so the gay community’s one full-time lobbyist on the Hill, Steve Endean, had spent 1982 and early 1983 pursuing the agenda he had for years, signing up sponsors for a federal gay rights bill. GRNL had achieved success in enlisting seventy-one co-sponsors for the legislation, but both Bill Kraus and Tim Westmoreland knew the measure would not pass Congress for years, perhaps decades, and that more short-term efforts were needed for AIDS funding. GRNL, however, wasn’t interested.

The nation’s second national gay group, the National Gay Task Force, or NGTF, had divided up Capitol responsibilities with GRNL by announcing it would handle the gay community’s relations with the executive branch of the government. Bill Kraus was at a loss as to what that meant at a time when the executive branch was aligned with raving anti-gay fundamentalists, but agendas were slow to change in a community that had long viewed civil rights as its priority issue. Bill assembled congressional aides from Los Angeles, San Francisco, and New York for the first such meeting of gay aides ever held in the Capitol. This fact alone worried Bill, who was convinced that East Coast closet cases would be the death of the gay movement.

Bill had amassed the depressing statistics on AIDS funding and presented them to the group. The president’s new budget called for a 7 percent real decrease in money for the CDC, once inflation was factored in. Under the current budget for the fiscal year ending in September 1984, the entire National Institutes of Health had proposed spending only $9.4 million on AIDS, or about two-tenths of one percent of the agency’s budget.

Even more aggravating to Bill Kraus was the delay in National Cancer Institute grants, the money that researchers had been waiting for since September 1981. Privately, NIH officials had told Bill that the proposals were not up to normal standards. They were not “focused,” Bill kept hearing. So far, the National Cancer Institute had released only $340,000 in funds to applicants for the extramural grants. Scientists, meanwhile, told Bill that the low approval scores on unapproved grants was merely another example of National Institutes of Health dillydallying on the AIDS epidemic. How can you “focus” a grant application concerning a disease that has been known to exist for only twenty months? Any attempt to get such a focus would be highly artificial, given the fact that nobody knew even what caused the disease, much less how to focus research against it. The NIH was applying its ordinary standards to an extraordinary situation, they said. A lot of research would have to be shooting in the dark. To all this, NIH officials would wink that AIDS research involved a bunch of amateurs—hardly any of them were over thirty-five years old—and you couldn’t expect the federal government to throw money at a problem. Not in these days.

To make matters worse, Bill Kraus had heard rumors circulating among AIDS researchers nationally about internecine warfare at the NIH. The always-simmering rivalry between the National Cancer Institute and the National Institute for Allergy and Infectious Diseases had apparently exploded over AIDS. Now that AIDS was established as an infectious disease, NIAID wanted more of the action; the NCI argued that it had been working on the disease first, back when NIAID was ignoring it. Neither agency was talking much to the other, hampering anything like a concerted NIH assault on AIDS.

“We’ve got to get to work on this,” moaned Bill. “Doesn’t anybody up here care?”

Bill Kraus wanted to start making noise, hold angry press briefings, and begin militating for more funds. Tim Westmoreland was impressed with Bill’s street-politician smarts but considered his approach to Congress “blunt-instrument politics,” as he later confided. You just don’t walk into the U.S. House of Representatives, start screaming, and hope to prevail because you are right. Moral indignation did not win House appropriations. These things took maneuvering, said Tim Westmoreland, the consummate congressional insider. And they took time. Bill was relieved when the meeting was over. God, how he hated to be diplomatic, he told Michael Housh, especially with those fools who didn’t see AIDS as the top item of the gay agenda. What good were gay rights if they were all dead?

The next day, officials of the National Institute for Allergy and Infectious Diseases took Bill Kraus and other gay leaders on a three-hour tour and briefing on NIAID’s efforts against AIDS. With elaborate pie charts and complex scientific language, an eight-page memo showed that NIAID already had “propelled” a “large effort” against the epidemic. The memorandum used many of the bloated numbers about tens of millions of dollars in immune system research floated to Tim Westmoreland the month before. Now, however, the NIAID portfolio of “studies relevant to patients with AIDS,” the memo stated, “is approximately $27 million.” Somehow millions more had been added to the month-old numbers given to Tim Westmoreland.

Washington was all white and virtually paralyzed by the blizzards that swept across its broad avenues and majestic monuments on the last day of Bill Kraus’s visit. Bill stayed with Michael Housh and his lover Rick Pacurar. The three played together like children in the snow, making snowmen and snow angels. That night, however, Bill turned serious, recalling the snow that had drifted around his father’s freshly dug grave exactly twenty-five years ago that month.

Michael Housh had always noticed a dark side to Bill Kraus. It came out not only in his cynical humor but also in a certain downcast view he extended to his life in general, whether it was his inability to keep a relationship going or his frustrations with AIDS funding. Only now, however, could Michael trace the darkness back to something in Bill’s life.

His father’s death was very painful, Bill said. He was only ten years old and had felt so alone; it was even worse when the family moved away from bucolic Fort Mitchell, Kentucky, to nearby Cincinnati. And there was that memory, that awful visual image that returned to his nightmares, of the Kraus family plot in the Milwaukee graveyard buried deep in drifting snow the day they buried his dad. Ice. The frozen-hard ground into which they lowered the casket. Once Bill had seen an Ingmar Bergman movie in which a casket was being lowered into the ground of a cold Swedish winter, and Bill had bitten his knuckles so hard that they bled. It was so much like that awful February day twenty-five years ago, the day that was the end of his childhood.

He had never communicated well with his mother, Bill went on, and never really knew happiness until he went away to Ohio State University. He paused, his eyes following the ornate woodwork in Rick and Michael’s living room.

“I think I’m going to get it,” Bill said.

Michael didn’t know what he was talking about.

“I think I’m going to get AIDS,” Bill continued. “I’ve known it for a while.”

“A lot of people are worried about AIDS,” Michael said. “You’re being melodramatic. You’re perfectly healthy.”

Bill shook his head. “I just know it. Before this is over, I’m going to have it.”

P
ASTEUR
I
NSTITUTE
,
P
ARIS

Willy Rozenbaum could not contain his excitement. Days before, Professor Luc Montagnier had called, saying: “We’ve found something. Can you come over and tell us about this SIDA?”

Rozenbaum, Montagnier, Francoise Barre, Francoise Brun-Vezinet, and Jean-Claude Chermann had gathered in Montagnier’s office on the Pasteur campus. A new human retrovirus had been discovered, Montagnier announced. He said they would test the new virus to see whether it was HTLV, but it didn’t appear to be like the leukemia at all. It was cytopathic, dramatically killing the T-lymphocytes.

Rozenbaum laid out all that he knew about SIDA, describing some of the horrible deaths that had unfolded. All he could do was watch helplessly, he said. Treating one disease did no good because another disease would erupt a day later and kill the patient. Until they knew what caused the actual immune deficiency, there could be no effective treatment for SIDA.

Although he knew the idea lacked scientific proof, Rozenbaum had no doubt that the Pasteur team had discovered the cause of SIDA. A retrovirus—it made perfect sense.

Much work needed to be done, Montagnier cautioned. The group needed to start meeting weekly, every Saturday, in Montagnier’s office. They would start preparing a paper on this new human retrovirus for medical journals.